Green Mountain Disability Stories

In this episode of the show, we welcome artist and photographer Karen J. Lloyd. She talks with Inclusive Arts Vermont's Heidi Swevens about coming to terms with incorporating disability into her identity, how Lyme Disease changed her life, and a painting by Lloyd that is part of Inclusive Arts Vermont's CYCLES exhibit: an image of a red-and-gold phoenix on a tranquil blue background. Karen graduated from the University of Vermont in 2004, with departmental honors. The CYCLES exhibit has been on tour around Vermont for the past year, and is being displayed at CDCI's offices in Mann Hall on the University of Vermont campus, in Burlington, Vermont through May 2025.

Cosmo Duncan is about to graduate from high school, in Burlington, Vermont, and embark on his life as an adult. Cosmo, who has Down Syndrome, sits down to talk with his mom, Scarlett Duncan, and occupational therapist Catherine Armani-Munn. They talk about what life has been like for the family in Vermont, Cosmo's new business, and some important differences between life in rural and urban Vermont. "I think that it's really important to see the difference between the two Vermonts: the rural and the urban Vermont. And we are still good here in Burlington, but people who live in the boondocks? There's nothing there. And if the person does not have a driver's license, which a lot of people with developmental disabilities won't be able to have, then they're stuck." --Scarlett Duncan

Kate Adams is an Indigenous Vermont artist with multiple disabilities, and in this episode of the show, she sits down with CDCI Academics Coordinator Winnie Looby. They talk about Kate's work with her horses on disability and trauma, the messages carried by geese, and Kate's life as an artist with ADHD.

Vermont-based physical therapist Katy Gamelin talks with CDCI's very own Jackie Feiss about her experience of having POTS: Postural Orthostatic Tachycardia Syndrome. Jackie shares how she copes with this largely unknown chronic illness that affects all major body systems, along with the symptoms that led to her diagnosis, what it was like trying to get an accurate diagnosis, and some of the life hacks she's developed in order to manage her life as an educational consultant, wife, and mom.

In this episode of Green Mountain Disability Stories, we welcome Lynn McNamara, from the Nature Conservancy Vermont. Lynn joins CDCI Communications Manager Audrey Homan to talk about what the Nature Conservancy Vermont learned in building accessible natural outdoor areas in Monkton, and Hartland Vermont. “I think the trails that we’ve improved accessibility on also seem to protect the natural features more. We’ve found that our accessible trails and boardwalks hold up better to increased traffic. We have less erosion, and even with some of the storms that we’ve had in the last couple of years, they hold up better because they’re designed to have better drainage so that the surface stays level and firm for folks with disabilities. But it’s also protecting the natural areas around them a little better.” Lynn is the family member of someone with a disability. https://youtu.be/7hLHuPpZa1Q A full transcript for the episode appears below. You can also download the transcript. Audrey Homan: Welcome to Green Mountain Disability Stories. Today on the show, I have Lynn McNamara, who is going to talk to us about some accessibility challenges that have come up in Vermont, in Vermont’s outdoor natural areas. And Lynn is something of an expert in this area. So Lynn, can you go ahead and introduce yourself? Tell us your name, your pronouns, what town you live or work in and give us a brief verbal description of yourself. Lynn McNamara: Sure. So my name is Lynn McNamara and I use she/her pronouns. I’m the Stewardship Director at The Nature Conservancy based out of our Montpelier office. So I’m responsible for overseeing the management and monitoring of all of our conserved lands here in Vermont. Audrey: Fantastic. And can you tell us a little bit more about how your stewardship position interacts with access to those lands? Lynn: Sure. So to start with a little more about The Nature Conservancy, which I will try not to use acronyms, but if I say TNC, I’m referring to The Nature Conservancy, which is a global organization and we’re focused on protecting the lands and waters on which all life depends. And we do that in many ways all around the world from things like investing in water funds in Belize to supporting climate smart forestry practices, restoring American bison in the Great Plains. And here in Vermont, we own and manage about 57 natural areas that protect rare species or natural communities, do things like improve habitat connectivity for wildlife, but also provide opportunities for people to connect with nature. We think one of the most important ways to get people to support our work and care about conservation is to get out and experience nature. So as the Stewardship Director, my role is to maintain or improve the condition of these special places that we’ve protected and at the same time, provide a safe and welcoming experience for visitors. And so that also intersects with disability access because we want to, as much as we can, make these places accessible for everyone. Audrey: Thank you. Now, can you tell me a little bit about your own experience with disability in Vermont as a family member of someone with a disability? Lynn: Yeah. So in my 25 years or so of living in Vermont, I’ve been so happy to see how much improvement has been to disability access over the years, particularly in the outdoors. The efforts in the last five to 10 years to have more accessible trails across the state has been really wonderful and has made it possible for me to get out in nature with my stepfather who has a mobility disability. So as a kid, we did lots of outdoor activities like hiking and fishing and biking, but after my dad injured his back, those things were no longer possible. And when I first moved to Vermont after college, getting around and seeing the state was really difficult for him, especially in winter when snow and ice can make otherwise accessible areas, even sidewalks, really treacherous and sometimes just not possible. But I feel like that’s slowly improved. And especially in the last few years, it’s been great to bring him to some places that have accessible trails like Raven Ridge or the Barnes Camp Boardwalk up in Smuggler’s Notch. So I feel like things have really been improving fairly recently. The entrance to the new accessible boardwalk at the Raven Ridge Natural Area, Monkton VT.   Audrey: So have your dad’s experiences influenced how you approach your stewardship work with The Nature Conservancy? Lynn: Yeah, they definitely have. I think the first time I brought him out to visit one of our preserves, I don’t remember, it was maybe five years, it was before COVID, probably five years ago or so, but I’ve been working at The Nature Conservancy for almost 18 years and so he wasn’t able to see my work before then. Not really. I’d send pictures and things. But I think like most dads, he’s proud of what I do. And being able to show him firsthand was just really special for me. And it definitely has made me think more about what can I do to make these places more accessible for as many people as possible? I think it’s easy for folks to think like, “Well, Vermont is very hilly and steep and there’s no way that could be accessible.” And yes, a lot of places in Vermont are hilly and steep, but there’s a lot that are not and there’s many ways to improve accessibility for a variety of disabilities. It’s not always just for mobility access. Audrey: Now, The Nature Conservancy of Vermont has done work in the area of making some of the natural outdoor areas more accessible for people with mobility disabilities. Can you talk a little bit about what some of those processes have been like? Lynn: Yeah. Well, when we first started thinking about improving accessibility was probably maybe around 2012. And that started with our Eshqua Bog Natural Area, which is in Hartland, Vermont, just a few miles outside of downtown Woodstock. And it was one of our most visited natural areas. It’s beautiful bog, really it’s a fen, but it’s called a bog, that is home to thousands probably of showy lady’s slippers that bloom every June. And we had an old boardwalk there that was built before my time, I’m not quite sure when, but it had slowly been heaving and was sinking into the bog. It had no railings or bumpers and it could get pretty slippery. Lady’s slipper flowers. Photo via CC 2.0, flickr user pverdonk   And as it deteriorated, we also began hearing from visitors that it was no longer possible for them to visit with their parents or grandparents who loved to see the showy lady’s slippers. So when it was time to replace the boardwalk, I pushed hard to make sure that it met accessibility guidelines so that it would be welcoming for everyone, but it would also provide increased protection for the rare plants that live in the bog because it wouldn’t be sinking into the bog anymore. We were going to raise it up to get a little more light to improve the habitat for the plants. And that also meant people were less likely to step off the boardwalk into the bog and not trample plants as much. But this was a huge learning experience for me. I really had no idea what I was getting into. I’m like: “Oh, we’ll just replace the boardwalk, no big deal.” But there’s a lot of permitting involved that I wasn’t prepared for. So while the project sounded great, it took probably a year longer than planned just to complete the permitting and the fundraising that we needed to do. But in the end, we were able to raise the money through we had a state recreation trails program grant, we had some private foundations who supported the project as well as a lot of fundraising just through individual gifts. There were a lot of people who really support that kind of accessibility project. So even though the price tag was pretty big, I think in around 2013 when that happened, that project probably cost I want to say around $125,000, which was definitely probably the biggest stewardship project we had ever done on one of our preserves. But it’s been a wonderful success and we’ve had so much gratitude from folks that live nearby, plus folks that have traveled really from great distances to out there and visit. The accessible boardwalk at the Raven Ridge Natural Area includes seating set off from the main path.   It’s just really been a wonderful experience all around. Audrey: What’s one thing you’d really like listeners to know about your work with The Nature Conservancy expanding accessibility in Vermont’s outdoor natural areas? Lynn: I think not just for The Nature Conservancy expanding, but for so many state agencies and municipalities and Green Mountain National Forest, there are so many people working to expand accessibility to nature in Vermont right now. And I think people should not be resigned that they’re not welcome in nature, that there are a lot of people across the state who are working to improve accessibility all over the place. And while sometimes it can be difficult to find the places that are accessible just because I’m not really aware of one sort of repository that can tell you where they’re… Trailfinder and AllTrails have filters, but I feel like they’re not always super accurate. But I would tell people to not only find those places, but also continue to push for increased accessibility and improved access routes and public transportation to those places so that you’re able to get out there. If your town has a park or a town forest, talk to the select border or city council if you live in a city about improving accessibility and see if you can get involved in the public process to really help your voice be heard. Access to nature has been shown to have great benefits both for mental and physical health and that’s important for everyone. Audrey: I absolutely agree. Are you getting a lot of feedback on your work with the bog area? Are you getting a lot of feedback from people with disabilities on ways that they’re enjoying the upgrades that have been or ways that they’re still pushing for additional access? Lynn: Yeah, we’ve had a lot of feedback both at Eshqua Bog and our Raven Ridge natural area that’s in Moncton that has an accessible boardwalk and trail that ends at a beaver pond, so there’s a little wildlife viewing platform there. And we get a lot of feedback that people are so happy that it’s accessible, but not just from folks with disabilities. Improving access for disabilities really improves the experience for everyone. So we hear from families with small children or people who’ve never really been out hiking much. Having a nice wide safe trail can be much more welcoming than a very primitive narrow trail to somebody who’s never really been out. So we’ve had great feedback. And we’ve also put up some trail counters, we’re trying to measure improvements in visitation. And in places where we’ve improved accessibility, we generally probably have gotten like three to four times as many visitors once the trail is improved. Audrey: I hadn’t realized that the improvements generated that much more interest. That’s amazing. When the Nature Conservancy was going through this process of having to learn about accessible trails and accessible pathways and walkways, were there some ways in which you felt like Vermont as a place or state was supportive of the efforts that the improvements that the Nature Conservancy was trying to make? Lynn: Yeah. I know I talked about the permitting processes previously, which were at first a little overwhelming to me because I hadn’t really done that before. And in both of the places we’ve created accessible trails required Act 250 permits and I know I say that and it might scare people. But the Act 250 permit process, we need wetlands permits as well, the staff at the state, the permitting staff, were very supportive of these projects. I think for them, it was wonderful to see somebody trying to improve accessibility, even if it was in a wetland. So they wanted to make sure that we were able to navigate the permit process well. And so we had a lot of supports from the regulatory folks. So I would say: don’t be afraid of the permitting process. Yes, those permits can seem daunting, but it wasn’t so bad. Same with fundraising. The cost of some of these can also seem overwhelming, but we’ve really had great success in fundraising for these projects. There’s state funding, there’s private grants available and there’s just a lot of private donors who are interested in supporting these kind of projects. Audrey: I think the flip side of that question is when you were going through this process with The Nature Conservancy of Vermont, were there any ways that you felt like Vermont was particularly forwarding the process or there are spaces in which Vermont could create friendlier systems for these accessibility upgrades? Lynn: Of course, fundraising. Yes, fundraising is easy, but these projects are also very expensive. So having more sources of funding that are larger. Sometimes I think the Recreation Trails program grants about $50,000, and honestly, that doesn’t go all that far for some of these projects. But some of the more recent grants, like the VOREC grants at the state that have an accessibility focus, those are a bigger chunk of money. So from a fundraising perspective, it’s really great to get a big chunk of money, especially at the start of a project because that can help bring in some smaller gifts to finish up the project. Also, one thing, as I mentioned earlier, that I think would be great in Vermont would be to have a central place where people could go to find where these accessible trails are located. And I’m just not aware of if there is a place, I’m not sure if you are, or more accurate information on AllTrails or Trailfinder, just a place where people could just if you’re looking to get out in nature, you could find a nice list with links, I think that would be great. Audrey: It’s interesting that you mentioned the VOREC grants because one of the VOREC grants went to the Vermont Trails and Greenways Council. And their project is actually to build a hub, a website that pulls all the information about accessible trails together into one place. So that exactly what you said, you can look up your favorite place before you head out there to see if the trails are going to meet your needs. Lynn: Oh, that’s wonderful to hear. Audrey: Yeah. Obviously, we hope that all trails become eventually accessible because earlier you were talking about how the feedback you’d gotten came not just from people with accessibilities, but also from people pushing strollers, that comes under the heading of a situational disability, having to navigate that stroller over rocky terrain or through a narrow dirt corridor between high grasses. But it’s just as important for those people and that family to get access to that natural area as it is for someone in a wheelchair or someone using a cane to also be able to navigate that trail. Lynn: Yes, definitely. Audrey: So what’s one thing you wish you had known about disability or about Vermont or both 10 years ago? Lynn: I think one thing we’ve really seen is how improving disability access improves access for everyone. And I really hadn’t realized that prior to working on these projects. But as we said, in addition for folks with say situational disability like people with kids in strollers, I think these accessible trails and boardwalks can really provide different opportunities. We often see photographers or other artists out there setting up on the boardwalk and it just makes for an overall more welcoming experience for everybody to get out in nature. And I think the trails that we’ve improved accessibility on also seem to protect the natural features more. We’ve found that our accessible trails and boardwalks hold up better to increase traffic. We have less erosion. And even with some of the storms that we’ve had in the last couple years, they hold up better because they’re designed to have better drainage so that the surface stays level and firm for folks with disabilities, but it’s also protecting the natural areas around them a little better. The boardwalk at Raven Ridge Natural Area, where it meets the path leading to the caves.   Audrey: I love hearing that. I had no idea that the more accessible trails actually were sort of more fiscally responsible because they need to be replaced fewer times than previously. I’m wondering because I live in Hinesburg, where as a town, we’re talking about building a green space in the middle of town that is for everyone’s enjoyment. And so far, the biggest topic of contention has been the walkways because people want paths that go through this green space that are technically accessible but also fiscally responsible because everybody is having this conversation around the way that towns and municipalities use tax monies. So what’s one piece of advice you could give to someone living in Hinesburg or someone in a town that has a similar situation going on where they’re trying to have these discussions with the select boards and with other townspeople? What’s one piece of advice you have for those people in terms of advocating for accessible trails and walkways? Lynn: I think yes, money is always going to be contentious, but that shouldn’t be the primary deciding factor on whether these spaces truly are going to be for everybody. There are grants that municipalities are eligible for. And I think maybe towns are a little more fiscally conservative. There’s always going to be loud voices on every side of when money and taxes, property taxes, come up. But I would say I think towns have a responsibility to everybody and maybe even more so to folks with disabilities. For many years, folks with disabilities and others were disenfranchised a bit and didn’t have a voice. And I think now we do. And it’s important for towns to advocate for everybody in their town. Audrey: I love that. I love the idea that people with disabilities are a constant presence in conversations around building these natural areas at the town level. I love that that should be standard when you’re having conversations with the select board to remember that people with disabilities are part of every single community. So a couple last questions and then I’ll let you go because I know you’re super busy. But has your dad been out to see the lady’s slippers yet? Lynn: He has not and I’m not sure why. I think they generally bloom around June 21st, which just always feels like a very busy time of year for everybody. He lives in Massachusetts and it just hasn’t worked out to go there. But I have taken him to Raven Ridge and he’s been to the Barnes Camp Boardwalk up in Smuggler’s Notch and really enjoyed that as well. So next year for sure, we’ll make sure we get to Eshqua Bog to see the lady’s slippers. Audrey: Excellent news. And then the last question I have is simply if you have any one piece of advice for other disability advocacy organizations or other outdoor natural area advocacy organizations on where to start with pushing forward with accessibility in the natural outdoor areas around them? Do you have any one piece of advice you could offer? Lynn: I would say for folks that are involved in making spaces more accessible, for managing these places, is to not be afraid. As I said, I had zero experience when I started working on this 12 years ago or so. If I could do it, anybody could do it. There’s a lot of help out there. There’s a lot of resources at the state. There are grants. And I’m happy to talk with folks if you want to reach out to me for more details about some of the projects I’ve worked on. And I think this is something that’s really important for Vermont, for Vermonters. And having advocates, both who are managing lands and who want to get out more, will just continue to improve accessibility for everybody. Audrey: Amen to that. Really love that. Lynn: Great. Audrey: Lynn McNamara, thank you for joining us from The Nature Conservancy Vermont to talk about accessibility in Vermont’s natural outdoor spaces on Green Mountain Disability Stories. Lynn: Thank you, Audrey. It’s been my pleasure.

https://youtu.be/pPwhCrM7X44 In this episode of Green Mountain Disability Stories, autistic physician Mel Houser joins CDCI Academics Coordinator Winnie Looby, as they talk about community access and belonging. “I never really saw myself as…like, an advocate, in any way, really? Because people in Vermont, I think, many people, have been doing some good thinking around diversity, equity, inclusion and belonging — all these things that have unfortunately become very buzzwordy. And it’s just that diversity, neurodivergence, those topics have been missing from the community conversations on diversity, equity, and inclusion. So when I show up, and I talk about that, do I see myself as wearing the hat of a disability advocate? …I show up and name the thing about the oblique angle. It’s given me a lot of hope that that has landed in some brains that truly have never thought about this before.” A full transcript appears below. Episode 28: Mel Houser with Winnie Looby Winnie Looby: Hi, Mel! Mel Houser: Hi, Winnie. Winnie: Hi. So I guess I’ll start. My way of doing this is very casual, so– Mel: Perfect. Winnie: –Hopefully it won’t feel like I’m interviewing you too much. Mel: That’s why I agreed to do this because you were the interviewer and I would talk to you all day if I could. Winnie: Aw, so sweet. Thank you. Okay, let’s see. So, hi, I’m Winnie Looby. I’m an Academics Coordinator for CDCI, and I’m interviewing today Mel Houser. My pronouns are she/her. I live and work in Burlington. And to briefly describe myself, I have brown skin, glasses, graying brown hair, locks, and a white shirt. Mel, could you introduce yourself? Mel: Sure! So I’m Mel Houser, I use she/they pronouns. Visual description, I am a white person with short brown hair and I am wearing a red fleece. And should I tell you anything about me at this point? Is that an interesting… Winnie: Yep. Mel: Okay, I’d be happy to do that. I am a family physician. I care for toddlers through older adults, mostly neurodivergent people of all ages, often multi-generational families. And I run a nonprofit organization called All Brains Belong Vermont. We try to make life better for people with all types of brains through medical care, social connection, employment support, and helping the broader community better understand neurodiversity. The other thing I’ll mention about myself is that I myself am autistic, ADHD, dyspraxic, dyslexic, dyscalculic, and the parent of a multi-neurodivergent child. And so I wear lots of different hats and I’m happy to talk about my experiences of disability and some of the trends of the work that I do and the people I support in Vermont. Winnie: Awesome, awesome. Yeah, it’d be great if you could tell us a little bit about that, your experience with disability in Vermont overall. Mel: Yeah, I would say that in reflecting on how to best respond to that question, I also really need to name the aspects of my identity that have so much privilege. And so as a white person, as an educated person, as a person who shows up and says, “I’m a doctor,” that impacts my experience of disability personally, and I need to name that. I never really saw myself as an advocate in any way really. I saw you just make a face about that because people in Vermont, I think many people have been doing some good thinking around diversity, equity, inclusion, belonging, all these things that have unfortunately become very buzzword-y, and it’s just that disability, neurodivergence, those topics have been missing from the community conversations on diversity, equity, and inclusion. So when I show up and I talk about that, do I see myself as wearing the hat of a disability advocate? No, I’m not the most gifted, articulate disability advocate. I really am not. There are so many people in Vermont who do that really well. I show up and I name the thing about the oblique angle, and I think that it’s given me a lot of hope that that has landed on some brains that just truly have never thought about this before. However, I will also say that in 2024, we are still in the middle of a pandemic, and the aspects in which my disability most is not accommodated in the world is through the lens of most public places are not safe for me. And I have to make a lot of choices when choosing between my health and full and meaningful participation in a lot of instances. So I’ve had experiences where there’s healthcare I’m trying to access, and as an immunocompromised person, the air in those healthcare environments is not safe for me to breathe. And I have had the experience of needing to opt out. That’s what I do. That’s how I cope. When something’s not safe, I opt out of it. And so I’ve had to cancel several types of healthcare appointments. I’ve had the opportunity of being accepted to present at a conference and then even when upfront disclosing my disability and naming that I need to be able to present virtually, I’ve had that speaking opportunity revoked. These things happen and they happen all day long and they happen less frequently to me than someone who doesn’t have these multiple layers of privilege. Or my experience is such that the systemic ableism that is embedded not just in healthcare but in the public school system, my family has been impacted by discrimination in those areas in a way that people would not necessarily name. But when we think about exclusion, it’s the opposite not just of inclusion, but it’s like the opposite of equity in terms of who gets to show up. And my family, so many of my patients, they’re not able to show up at school because of the way the system really is set up to shove people into containers in a one-size-fits-all way. And it is painful. It’s painful to watch, it’s painful to experience, it’s just painful to see systems that are so broken that they are so beyond repair. So that’s my experience of disability in Vermont. Winnie: Yeah, and you covered a lot of different layers there. So community healthcare: as you know my spouse has been recovering from cancer treatment. And we were kind of a good hygienic family anyway, but it’s taken on a whole new meaning. Now to keep him healthy means yeah, we opt out of stuff. We missed a family reunion, folks we hadn’t seen in a long time. Even though it was going to be outside, it was going to really tax his system too much to do it. And it is hard, I agree that it feels like you’re kind of talking to the wall when you try to explain why things are a little difficult. I’ve heard students say, “Hey, it was okay for me to do things virtually before. It was okay to turn things in a little late before. Now we’re back to normal, whatever that is, and I can’t get those things anymore. I don’t understand.” Yeah, so it has been confusing. I try not to get mad about it, but yeah, it’s been really hard. Been really hard. Mel: So what you just named, the get mad about it, that’s something that I personally have been noticing about myself is that when I either experienced myself or my family or my patients, that exclusion, that thwarting, I react with rage. And so that’s not good for anybody’s health, but it’s automatic, it’s an automatic nervous system response to these systems level examples of exclusion. Exclusion is painful. Winnie: The idea too that something isn’t fair pops up for me, yeah. Mel: Yeah. Especially in examples where they’re contexts that shouldn’t be optional. It’s one thing like I don’t expect to be a large public concert to be safe for me to attend as an immunocompromised person, but I expect to be able to access healthcare. I expect for my child to be able to go to the orthodontist. I absolutely expect for them to be able to access public school. I absolutely expect that. And when that’s not the case, I experience rage. Winnie: I wonder too, because you named the privilege piece. Well, my kids are a lot older now, but I remember thinking, sitting in an IEP meeting, how many parents would feel too intimidated by that process to really push back about things. Or maybe they work a lot, they can’t take off in the middle of the day for a half hour meeting where five or six professionals aren’t even really listening to what they’re saying. That part I think gets to me more. I’ll figure it out, but sometimes people don’t have a lot of resources that way. Mel: I absolutely agree with that. And honestly, that’s part of my rage. So for example, in this instance as an immunocompromised person with an immunocompromised child, to know all the right things to say, to know what my rights are, to at the beginning of the journey have more capacity to fight the fight, but then because of my own chronic illness, to really not have, even with the knowledge and the access to resources in terms of even people resources, people to ask for help and knowing the right people to ask these questions of, even that, the fact that I still could be coerced out of a public school system, what does that mean for the broader community? Just the power dynamics that are so unsafe for children and families with disabilities to be able to get what they need in school is just … I have a lot of emotions around that and it’s when I see my patients, I would say that almost all of my neurodivergent kid and teen patients, almost all of them are not having their needs met in school. And when the health consequences of being thwarted all day long, to be receiving the explicit or implicit message that there’s something wrong with you, something that needs to be changed about you in order to fit into the container, that’s bad for health. Winnie: Yeah, yeah. It kind of wears you down. Mel: It does wear you down until you tell yourself that it’s your fault. And it stays with people. Winnie: Right, so do you mean like once people give into maybe just give up because tired? Mel: They give up, yeah. Winnie: Yeah, yeah. Why do you think, I mean I have my own theories about why. I keep thinking about lockdown and how my health actually improved during lockdown because I was allowed not to be around people for a while and to regenerate and rest and stay out of public places and not have to worry about germs because I was home a lot and my health got so much better than it had been for a really long time. And so in my mind I’m thinking like well, okay, if we know that there’s lots of kids with disabilities who did better being home where they were able to do school online and be wiggly and all the things that felt more comfortable for them, if we know that college students were able to access their classrooms a lot easier, to get their work in a lot easier, there wasn’t a lot of pressure around deadlines and stuff come. I mean even people were a little more generous I noticed, a little more willing to go out of their way to be helpful. I wonder why there was such a rush to want to go back to how things were before. That’s just really disappointing. Mel: I think that’s how systems work. I think systems built on power structures, they drive systems. And so systems will forever go back toward those over-rehearsed brain pathways of this is the way we do the thing, this is how we have order, and this is how we make sense of chaos. And it’s not the fault of any individuals I don’t think. It’s systems, systems that are not based on the reality that we all have different brains, we all have different bodies, we all have different needs. And when you say it that way, people are like, “Oh yeah.” People can make that shift in their brains, but well, the system is this way. Winnie: Yeah, I guess too then I wonder how come you can talk one-on-one with folks and they understand where you’re coming from if they didn’t before, why is it so difficult then for more of those brains to get together to change systems? In my head, it’s just logical, but maybe I’m making it too simplistic. Mel: I think it is overly simplistic. I think that really is how it is. It’s just the idea of when do people have access to the thinking part of their brains. And the path of least resistance when you are a person working in a system that is also not meeting your needs as a person who works in a system, whether that be in healthcare or school or certain corporate environments, when you don’t have your needs met, you don’t actually have access to the thinking part of your brain, at least not fully. And so I think the path of least resistance is to go along with the system. It saves energy. And I think you and I have talked about this before, just the idea of to change a system, this top-down, make big structural changes. And so in early COVID, there were a lot of top-down changes that happened by necessity and a big dramatic shift, which then kind of opens the door for top-down changes. If you don’t have… Like school, for example, opting out of school, there’s so much privilege required to be able to figure it out, do something else. Who’s going to be home? Depending on the age of the child, who’s going to be home, who has to work, all of that. Opting out of all the broken systems might not be possible, opting out of some of the broken systems may free up a little bit more bandwidth, a little bit more space to be able to handle and navigate the broken systems that you can’t opt out of. That might be how maybe I think about that. Winnie: Yeah. Yeah. That’s great. Yeah, I hadn’t thought about that. I mean you get used to having to do things, have to interact with this entity, have to … Well, for example, pages and pages of paperwork for something very, very simple. Wanting my kids to … I didn’t have access to money for camps when my kids were little, and so having to get your taxes and all these forms and saying how you don’t have the money to be a part of this thing and can you have a scholarship? And so in the process, all these people are reading all of your business. You can’t have any privacy around anything going on in your life just to be able to access. Public assistance works that way. Food stamps works that way. WIC for mothers and children, we got that for a little bit when my kids were tiny. You had to bring your child with you to this office with a nurse practitioner I guess, and they had to weigh the baby and do all these things. I’m like, “They go to the pediatrician. Why are you doing all of this?” Mel: That’s my baby. Yeah. Winnie: Yeah, and I guess it was some kind of proof that you were feeding them. I don’t know what the purpose of that was. It was bizarre. Mel: So that’s the thing. So when systems are designed and workflows are designed, I think it’s really important that the people designing them zoom out and imagine the perspective of the people that you’re interacting with, and then you actually [inaudible 00:19:20] and collect information about what is that experience like for you. And the idea that you would compensate people to share their lived expertise with you about their experience of your stuff. That’s how this should work. That is not how this works at all. I think even when it becomes trendy and buzzword-y to learn from people with lived experience, people talk the talk, but then they’re like, “Well, yeah, why don’t you help me recruit for a focus group?” “Well, how much are you paying my patients?” “Oh, I have no intention of doing that.” “Okay, then have a nice day. Thanks so much.” People don’t know, they don’t know how disrespectful it is to extract from other people. Winnie: Yeah, yeah. It’s like an expectation, and I guess that gets back to the power you were talking about. I’m wondering, I’m hoping people aren’t aware of how much power they have. If they were, they might be kind of sociopaths, right. I’m hoping [inaudible 00:20:26] a case where you get to a certain kind of hierarchy in society that means that you have more privilege than whoever’s below you, which means you have more influence over what happens in their lives. And it’s just kind of a given. And the people who are under here accept it as a given because they have to. Mel: So for me, those dynamics feel so unsafe to my nervous system. And when there is a power dynamic, I think it’s really important that the person with more power is aware of their power and is aware of all the ways you can share it, all the ways that you can empower other people to have more power and take more power. Because I think part of an inclusive community is that people don’t power over other people because that’s a gross way of interacting. Winnie: Definitely. Mel: Even both as a doctor and as running a non-profit, anytime I am inviting or asking something of our community, I feel like it is my responsibility to be aware of the power dynamic of me asking. That it’s me asking. I try not to ask anything. I try to take myself out of the equation because those power dynamics feel unsafe. It feels unsafe to me to have them. And so most of what we do here for community engagement, we design it to account for those dynamics because that feels like the right thing to do. Winnie: Could you talk more a little bit about restructuring things around power and privilege? How do you- Mel: Absolutely. Winnie: You can’t do that in a vacuum, right? So how are you supported in that work I guess with your colleagues or just out in the world? Are you finding other folks who support these same ideas, even if they aren’t doctors or your patients? Are you able to find [inaudible 00:22:59]? Mel: Yeah, I think that … What a great question. I think that our structure here at All Brains Belong has been very much like a co-created community. So right from the very beginning, even before launching and opening, it was very much bringing people together and elevating lived expertise. And the organization was designed through that lens and continues to evolve through that lens. And it’s like anytime we’re going to do something I think through the lens of just thinking about how is this decision, how is this workflow going to impact other people? We bring that to our community advisory board. They give feedback on that first. We don’t do anything big that we think is going to affect people without getting community input. It’s not just like buy-in, it’s the right thing to do of what’s the point of the organization. The point of the organization is not to perpetuate the organization, the point of the organization is to serve the people. And so why would you not seek the people’s input? Winnie: Nice, nice. Yeah, you hear buy-in a lot- Mel: Gross, gross. So I have a PDA profile of autism, so technically speaking people might say that that is abbreviated for Pathological Demand Avoidance. That has been reframed by many as Persistent Drive for Autonomy, it’s a sub-profile of autism, for listeners who are not familiar with that term, characterized by really very sensitive threat detection. That is really what this is. So the way that my PDA impacts me is that power dynamics I experience, regardless of which side of it having more power or less power in a particular interaction, that dynamic feels unsafe to my nervous system. It always has. I remember being a little kid in school and being like, “This? This thing I’m watching? Uh-uh, unsafe.” I didn’t have words for that, but it has always made me feel really uncomfortable. I forget why I gave this background of … What was the question you asked me? Sorry. Winnie: Oh, I was talking about finding like minds or support. Mel: What’d you ask me after that? [inaudible 00:25:41]. I think I brought this up just to say that … Oh, buy-in, that’s where it was. Okay. Yeah. So when someone is not just trying to get me to do something, that’s a whole nother thing, when I see that someone’s trying to get anyone to do something, how do you get them to do the thing? That’s what buy-in is to me. How do you get them to do the thing? That feels unsafe to my nervous system, it really does, of just why am I trying to power over someone else? I’m not trying to do that. I’m just trying to do the thing. I’m trying to … I don’t know. I’m trying to do the thing that the people need me to do. It’s not even like how do I do the thing that I want to do? It’s not even that. Winnie: Right, right. So buy-in kind of, yeah in my mind, it means that you’re trying to get somebody over to your way of thinking about it. Mel: Yeah, yeah. Winnie: [inaudible 00:26:38] listening to what it is that they think or want. Mel: Yeah. And there are some things like one of our free community programs, Brain Club every Tuesday night, it’s our virtual community education program about everyday brain life. We say at the beginning, “This is a community education program for purposes of educating the community about All Brains Belong’s approach to neuro-inclusive community culture.” We do name that. I’m not trying to get to win you over to see the world as I see it, it just so happens that the way we see it is there’s no right way to think, learn, communicate, be a person. If that’s controversial to you, you’re probably not going to have a very good time at Brain Club and I may as well just name that. That’s all … So it’s not like, “How do I win you over?” It’s like, “This is the culture, this is the norm. We’d love for you to come learn about that.” How do you do that? Winnie: Yeah. I’m curious about, I know we’re talking about support too, but I’m wondering what would make somebody not want to be a part of something like that? You show them the science, you give them all the resources to look it up for their self if they didn’t know, what do you think would make people just not want to deal with it for whatever reason? Their own stuff that they don’t want to examine, do you think? Mel: I think many of us have brains that derive safety from predictable systems, and the amount of unlearning that is required to shift so many of your own thinking systems, unlearning is really hard. You have to want to do it and you have to believe it’s possible. And the way I think it works for people is that you’re around other people who are on this journey of unlearning, unlearning their expectations for what their experience of their life is. And so if you’re on that journey with other people, that’s a very different story. If you have never had the experience of showing up as your true self in a community and transparently examining some of these things, I think you fall back on the old ways of thinking. And most of us through most of our lives have been socialized with the message, “There is one right way to think or develop, socialize, communicate.” And I think the people who have the hardest time are the people who have professional training. So I think yes, the more rigid, but the more you’ve explicitly taught that there is one way to do the thing and this is how you do it, you have extra more unlearning to do than the average person. Winnie: Oh yeah. Oh yeah. You get your whole license around they being tested on exactly what the right thing to do is. Mel: Yeah, without recognizing that thing you were taught was just a system that just got passed down, at no time was that system necessarily compared to brain science. At no time was that system subjected to the lens of what does this mean about culture? Are there groups of people for whom this system doesn’t work? How would we know that? Well, we’d ask them. Did we ask them? No, we didn’t ask anybody. We just did the thing over and over again. Winnie: Right, right, right. And for lots of other purposes, not even … It’s weird to talk about capitalism and disability, but I mean- Mel: Oh, let’s do it. Let’s do it. Winnie: It’s all enmeshed really. You think about … In one of my classes, we talk about perceptions of disability like say in the colonial period, some folks who lived here already before colonialism began thought that, “Hey, if you can contribute to community in any way, you’re a valued part of community, period.” But then skip ahead to industrial age where you have to be busy, idle hands are bad, being homeless is your own fault. We’re hearing that again. Yeah, I can’t not think about are all of our advancements and the cost it has been for just most regular people who just want to live their lives. Mel: Yes. All those isms, they’re all enmeshed. And I think that at the beginning of this conversation, we talked about the oblique angle. I think like at Brain Club, when we talk about how things like urgency culture, perfectionalism, individualism, all these things are connected to white supremacy culture. When you name that for people, they’re like, “Oh, I need to reject all of that.” Yes, yes, you do need to reject all of that. And so I think this ableism capitalism thing of your value comes from what you produce, your value comes from how much you earn or whatever, all of that stuff, it’s really harmful. It’s really harmful. There’s no way around it. And so as we talk about re-imagining healthcare and community, then the thing that we are spending some time now really talking about with our community is around re-imagining economics. How do you bring a community together? How do you help people figure out how to get their basic needs met through connection with other people? Going back to how did this used to work when you were part of a community, your value came from just being a person in community. And rewriting those brain pathways to make that so, I think that’s an important factor, and that’s what the second half of 2024 is going to be about for us integrated into a healthcare system, our healthcare system. Winnie: Gotcha, gotcha. I had a question. I forgot. Mel: Take your time to think about it. Winnie: Let me take a drink of something. Mel: Yeah, you take a drink or something. I’ll take a drink of something. And I probably have time for a couple more minutes. Winnie: What’s one thing you’d wish you’d known about disability 10 years ago, and then one piece of advice you have for people with disabilities or their family members? Mel: Yeah, I’m going to merge those. I remember early in my parenting journey and kind of like I mentioned, the people that have to do the most unlearning are the people with professional training, yeah that was me. So professionally, I have a whole bunch of neuro-normative training about how babies develop and the milestones you check off in the linear progression. We know that that’s not true at all, but that’s the way I was trained. That’s the way most doctors are trained. And so when my baby was not typically developing, I really, really wanted to intervene, through the lens of I want you to do the thing that I’m expecting babies are supposed to do, not necessarily through the lens of I want you to live your best life. So the unlearning journey for me was to get off my own train, my own agenda, my own set of expectations, and get on the train of I’m on board to support this sweet little love in whatever they are endeavoring to do. It’s not helpful to think about what do they need to do five years from now, I got to make sure they have the skills to be able to do that thing five years from now. It’s if they are striving to be able to play this game for an hour over and over and say the same word over and over again because that brings them joy and that’s what play is, play is the pursuit of joy, my job is to get on the train of supporting what it is that brings them joy now. And had I done that earlier, I think, and it’s never too late to shift the dynamic with your child, but had I shifted that earlier, I would’ve started being able to cue safety a lot earlier. Because again, the same way that my nervous system sounds the alarm when someone tries me to buy-in or get me to do the thing, I think there’s many nervous systems that when you are trying to get them to do the thing, that does not cue safety and in fact interferes with being able to do the thing. Winnie: Right, right, right. You start learning how to mask or ignore what you need because you comply. I think I’ve noticed that a lot of special education, and I trained in special education, a lot of it is around getting kids to comply with what they’re supposed to do. Mel: Right, as opposed to honoring your intuition, being able to say no, being able to … The expression we use in my child, “Be the boss of your body.” All of these things are so essential. And the idea that we don’t recognize that overriding intuition, not being able to say no, not having bodily autonomy, the way that we don’t connect that to future harm, how do we not connect them? They’re related. Winnie: Yeah, definitely. Definitely. Yeah, absolutely. I’m glad you said that because I think about that a lot with my own kids and being in special education when they were very, very tiny, two of them. And I just wonder how their personalities would be different or their sense of self would be different if they hadn’t have been through that. Right now they’re homeschooling and their personalities feel completely different than they did when they were in school. They just seem lighter and funny. Their quirk has come out that I hadn’t seen before because we were trying to get them to do the thing. Mel: Right, because you’re told that you have to, and there’s all those other systems that had you not done the thing that the system tells you to do, it ends up possibly not being safe, especially if you are … There are resources that are only accessible through interacting with systems, and that’s where all these things intersect and that’s where the harm is done. Winnie: Oh yeah, you can’t get this thing unless you do this thing. This thing that you need, you can’t have unless you comply with this thing. Mel: Right, right, and unless you’re on the train, the factory train to drive all these other systems. Winnie: Gotcha. Mel: Yeah. So on that hopeful note, I do do think it doesn’t always have to be this way. So it’s about first shining a light on it, naming it so that when you’re in it, you can at least zoom out, even if you don’t have privilege agency to opt out of it, to at least recognize that that’s what’s happening is the first step. Because the alternative is it’s happening and you’re like, “Yeah, here I am. I don’t have value. I just got to do the thing.” So I have value, my child has value, my peers have value. Everybody has value by being a person. And when I show up in systems that are not safe, that doesn’t mean there’s something wrong with me. It really just means it’s not safe for these reasons. Winnie: So would you say that would be your advice for folks with disabilities and their families? Mel: To sum up, we navigate this world not by ourselves, we have to be connected to other people. So it’s like find a community, whether it’s through All Brains Belong or elsewhere, just find a community of other people who are looking to reimagine the things that you’re looking to reimagine and do it together. That, it may not be a fast track, but it is a much faster track. Winnie: Oh yeah, yeah, and helpful one too for you in the long run. Yeah. Mel: Yeah. Winnie: Nice. Mel: Awesome. Thank you, Winnie. Winnie: Thank you so much, Mel. I love talking to you. Mel: I love talking to you too. I hope you have a great day. Winnie: You too, bye. Mel: Bye.

In this episode of Green Mountain Disability Stories, occupational therapist Adrienne Miao interviews occupational therapist Mary Anne Lewis. Mary Anne is also mom to Patrick, Desirée, and Dustin. Patrick is a Vermonter living with cerebral palsy and blindness, and as his mom, Mary Anne helps Patrick run his own successful business while she and her husband run a bed-and-breakfast in Vermont. Mary Anne shares what she and her family have learned about moving to Vermont and joining a new school, the overlap between her occupational therapist and parent roles, and the fine art of shipping jars of dry goods.

In this episode, executive director Jesse Suter talks about Long COVID with Krista Coombs and Kate Larose. Krista and Kate both work at the Vermont Center for Independent Living (VCIL), and both of them have firsthand experience of being, being with, and supporting COVID "Longhaulers". ('Longhauler" is a nickname for people with Long COVID). The three of them talk about changes in disability equity and healthcare in Vermont as a result of the COVID pandemic, as well as some of the work VCIL has been doing to support people disabled by COVID.

Adrienne Miao interviews Matthew LeFluer, a self-advocate with autism. Matthew works extensively on committees with disability organizations and the State of Vermont -- including the CDCI Community Advisory Council. Matthew has a lot of experience with disability service systems in Vermont, and he has a lot of advice for how to make those systems work better.

In this episode, occupational therapist Phoebe Chestna interviews Ben Wimett. Ben is a lifelong Vermonter, living down in Brandon, Vermont, with his dog, Pepper. Ben also has cerebral palsy, and works as an assistive technology provider with the Vermont Assistive Technology Project. And Ben's here to share his stories of navigating Vermont schools (and snowbanks!), how power wheelchairs have changed over the years, and his advice to children with disabilities -- and their parents. "The biggest advice I can give you is that if something happens, it's not your fault. The biggest thing I can tell you is deal with the cards that you're dealt. And I think the way my family did that is, yeah, I had to do things differently, but if I wanted to do something, we did it."

Jan H. lives in Southern Vermont, and in this episode, she tells her story of living with multiple chemical sensitivities to Emerson Wheeler, Health Equity & Community Engagement Coordinator at the Vermont Department of Health. Jan talks about how Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, or ME/CFS affects her options for housing, employment, healthcare, and just about every facet of her life. She also shares what other people can do to advocate for themselves as well as make it easier for her and other people with ME/CFS to be included in their communities.

In this episode, UVM faculty member and academics coordinator Winnie Looby interviews Vermont artist Leah Schulz. Leah's art directly references her experiences of multiple disabilities, as well as addressing and incorporating elements of who she was before she became disabled. Leah's painting "Cyclical Choices" (2023) is part of an exhibit of work by Vermont artists with disabilities. The exhibit is being produced by Inclusive Arts Vermont, and is being shown at the UVM Davis Center, in Burlington Vermont, before being shown around the state, and then returning to Burlington for an extended residency with the UVM Center on Disability and Community Inclusion. We'll hear from Leah about her journey as an artist, as well as how disability shapes her art, and what it's like to be back on the UVM campus -- this time as an exhibitor, instead of a student.

In this episode, we're excited to welcome Michele Streeter to the show, to talk with show producer Audrey Homan. Michele Streeter is mom to Ocean and April Streeter, two siblings you met in Episode 20. Michele talks about what it's been like to provide support and guidance for a child with a disability as they navigate the transition to adulthood, post-secondary education, and independent living. Michele Streeter is also a Family Resource Consultant for the Vermont I-Team.

Ocean Streeter lives in Hyde Park, Vermont, with cerebral palsy (CP) and Autism Spectrum Disorder (ASD). And in this episode, she talks with her sibling, April Streeter, about academic accommodations, independent living, self-advocacy, and the road she's currently on to becoming a published author.

Welcome to Green Mountain Disability Stories, a monthly series of conversations with, by, and for Vermonters with disabilities, about what it's like to live with disabilities here in Vermont: the Green Mountain state. In this episode, we welcome Persephone Ringgenberg to the show. Persephone lives in Vermont with her service dog, Willow, aka wildebeest, and is an artist and a freelance self-advocate for people with disabilities, especially people with epilepsy, and people with mental health issues. She talks with Rachel Cronin, assistant director for the Center on Disability and Community Inclusion at the University of Vermont about making art, baking poundcakes, and how her life changed over the course of the COVID-19 pandemic. Let's listen.

In this episode of Green Mountain Disability Stories, we welcome Dr. Sefakor Komabu-Pomeyie back to the podcast. She sits down with CDCI executive director Jesse Suter to talk about her brand new memoir: "I'm Able: A Woman's Advice for Disability Change Agents". The memoir cover's Dr Komabu-Pomeyie's life as a child in Ghana, where she contracted polio and lost the use of her legs, but took heart from her mother's unwavering support, faith, and love, all the way through to her current life in Vermont, where she has earned a PhD from the University of Vermont and is now a lecturer in UVM Disability Studies.

Dr. Winnie Looby, director of the UVM Graduate Certificate in Disability Studies, connects with disability self-advocate and researcher Nicole Villemaire. Nicole has been working in Dr. Looby’s Disability Studies courses as a teaching assistant, and she shares what that experience has been like, along with more of her own story as a passionate self-advocate. To learn more about the Disability Studies graduate certificate, please visit go.uvm.edu/disabilitystudies Watch this episode: https://youtu.be/_ZT2cruSEW8?si=JLF5zil7OjyIUMMJ Winnie Looby: Hello. My name is Winnie Looby. I’m with CDCI, as our academics coordinator and I also coordinate our graduate certificate program. Today, I wanted to interview my colleague Nicole here, and we’ll talk a bit about our work together. So, Nicole, glad you could come. Okay. So my first question is, could you tell us what your relationship to disability is? And if you identify as a person with a disability? Nicole Villemaire: Well, I can answer the question. My name is Nicole Villemaire, and I identify with a disability. I also my relationship to disability is that I have multiple disabilities, and one of them is autism. And one of them is an emotional disability, for which I go do behavioral therapy. And then I have go some fine motor skills difficulties. Winnie: Thanks for telling me that. So what’s your relationship to the CDCI? I know you worked for CDCI long before I worked here. So how did you get involved in CDCI? Nicole: Well, I actually was a office assistant. I got hired as an officer since then. Back a while back. And then I was like a mentor with. With some with someone with a coworker named was a coworker that also worked for CCI. And then and on the the what was said, they the advisory committee for CDI. And then I and then I became a member. I was on the advisory committee for quite a while and then I started working with whenI uh, doing some classes for teaching as work. I also went to the Think College program at UVM with Brian Dague. And then I did some other work. I’m working on my research project on Think College with Jesse Suter and Brian Dague. I’m trying to complete that… and that’s about it. That’s my relationship with CDCI. Winnie: Yeah, you’re busy. I don’t think we’ve talked about all those things at the same time because that’s a lot. What’s it been like? I guess you can talk about the class. Nicole: Sure. Like at first we worked on we were we’re working on designing a new class that we couldn’t run on because we don’t have enough students. So it’s about kind of like self-advocacy. Of course, we worked on that first, but then when that course didn’t run, you started to to for me, for our class or disability class. Winnie: Right. So what’s what’s your experience been like so far? Nicole: My experience with the Culture of Disability class has been quite amazing. I get to hop onto the class and teach like, the viewpoint of self I receive from someone who has a disability. And I get to like, talk to the class and also I’ve learned a lot, like what the classes are. Not really taking the class, but I get to — as a teacher, I get to listen in on the class and be able to follow along with the videos, and the readings, and hear what everybody is working on. And it’s kind of cool.  I like it. I think it’s cool to learn stuff about the class, even though I’m not exactly taking it. Like I get to hop on and off. I don’t have to do the work. Winnie: Gotcha. Yeah, I know. The students really enjoy when you’re there to like, lead conversations. Nicole: Yeah, I like leading conversations. Yeah, especially around– Winnie: I remember we were talking about your interest in self-advocacy. Like as a career. So has the class kind of been a nice practice toward that? Like: talking about the things that you’re interested in, independent living and working and stuff like that? Nicole: Yeah. So like, talking about independent living and working and just being a peer specialist and doing everyday stuff that everyone else gets to. Though I just have to do it my own way. Winnie: Gotcha. So what’s the most satisfying thing about doing teaching for the Culture of Disability [class]? Nicole: Well, it’s satisfying that I’m working, so I get to be on the payroll for CDCI. What’s satisfying is that I get to meet the students, and I get to learn about them, and I get to like, learn about the class and contribute with my self advocacy, and advocacy with disability rights. I get to teach them about what is to include someone with a disability, so they can see a picture of what it’s like with someone with a disability taking a course and doing things that everyone else can do. Winnie: Yeah. Yeah. So they’re learning a lot from just that you’re there and and being included and helping to run the class. Well, so what’s the most challenging thing? I know we were first starting to work together. I hadn’t thought through how to get you materials ahead of time. I remember that being [a challenge] and it’s still kind of hard for me to do that. The my organization’s probably my challenge, but what about you? What’s been like challenging about being a teaching assistant (T.A.)? Nicole: What’s been challenging about being a T.A. is like the time management. I’ve been able to get on the class and been able to do the class, and sometimes, like, I don’t understand, like, what’s going on in the class, but I like contributing to the class. And when I am able to, I will lead the sections of the class. But what’s challenging is just being able to know what’s going on. Like without, like working on class stuff together. Like, we sometimes, like, have trouble, like organizing and putting together the programs so that I can be involved with the class as well, in a unique way. Winnie: Yeah, Yeah. So we have to be really flexible and kind of I know when we have our meetings to plan, we have to, you know, just get to work right away and kind of figure out what we’re going to do. And I think every semester it’s been a little bit different, which for me is kind of exciting. But I also know that I’m hoping we can kind of find a — what do I want to say? –I hope to be more consistent with like how I, how I share things with you and how we, like, create things together more and more? Because a lot of the stuff in the class has been pretty much the same for a few years. But, you know, I really like when you give me more ideas to kind of embed,  abd make it more unique. I really like that a lot. What’s the most surprising thing that you’ve learned about students? Nicole: The surprising thing that I learned that students that they have usually a lot to share and sometimes they have a lot share. They usually have a lot to share, but sometimes are like really shy at first to open up. And I like just hearing about what they’re up to and what they’re learning from the class and growing as a person, like learning about disabilities and like, being a UVM student. Just some fascinating times. There was one student, one class that also somewhat had a disability, so that was kind of cool. Winnie: Yeah. Yeah, we have, we have students, a good number of students with disabilities in our classes, but they don’t all feel as comfortable talking about it as you do. And so, yeah. Yes, I know. I think and think remembering the student you’re talking about, like they they really don’t mind at all. They like talking about their experiences. Nicole: Yeah, that was like, really nice to have folks be open about it. Like, I try to talk about my disabilities too, and sometimes I forget like, trying to make people feel more welcome. Yeah. Winnie: Yeah, I like making people feel comfortable and welcome. Like they maybe open up about things that they’re struggling with, the things that they’re doing. And yeah, they learn a lot. I agree. Okay. This is the last question, actually. Really fast. What’s one thing you would like everyone, but especially students, to know about your experience with disability? Nicole: One thing that I would like everyone to know about my experience with disability is to be patient. Be kind. Don’t like, treat me like a child. [Treat me] like me; like, I’m just like everyone else, and able to contribute to the world in my own way. Treat me like a peer, because I want to grow and learn and contribute to life just like everyone else does, I just have to do it in my own way with my processing and my disability.     Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

David Frye is a gay Vermonter with disabilities. In this episode, he shares some of the struggles he’s gone through to find long-term employment and sustainable housing, as well as the strategies he’s used to be successful. From his childhood in rural Barnet, Vermont, to hosting his own public access show, “Prideability”, David shares his journey, and his advice to other people with disabilities. Watch this episode: https://youtu.be/yrEQtFnRmL4

https://youtu.be/pLrYbpBb6rg   In this episode, Vermont Children’s Integrated Services project director Julia Wayne talks with Nate Besio and Annie Bourdon about Oakledge For All, a project aimed at bringing a fully accessible playground to Burlington VT. Nate Besio is a person with a disability, and Annie Bourdon is the parent of a child with a disability, and they both relate how they got involved with the playground project, how the project has progressed so far, and what advice they’d give to other people looking to create an accessible playground in their own community. “The one thing that’s really impressed me about this is the involvement of the community; community representatives meeting members of the disabled community — getting involved. Also, quite frankly, we’ve had a lot of support from Burlington Parks n’ Recreation Department. They’ve gotten involved. That being said: it’s not without its struggles.” –Nate Besio A full transcript is available below. Julia Wayne: In this episode, we’re going to talk about accessible playgrounds and one accessible playground in particular, Oakledge For All. And how it worked, and what we learned and what we’d like to share with other people who are trying to make their own playgrounds more accessible. So I’m Julia Wayne, I work at CDCI contracting with Children’s Integrated Services as their personnel development coordinator. And my guests today are Nate Besio and Annie Bourdon. Welcome, both of you. Thanks so much for being here. Annie Bourdon: Thank you, Julia. Julia: Yeah. Nate Besio: Thank you. My pleasure. Julia: So can you introduce yourselves? What town you live in and how you’re connected to Oakledge For All project. Annie: Okay. I’m Annie Bourden. I live in Burlington, Vermont, and I am connected to Oakledge For All as a longtime volunteer because my family lives in the neighborhood in the south end of Burlington and that’s really close to Oakledge For All. And our son has disabilities and hasn’t been able to play in our communities playgrounds yet. He will soon, or he’s starting to with the arrival of Oakledge For All. So kind of that awareness of the lack of inclusive playgrounds and play areas and not just our neighborhood, but our entire city and state is what got me involved with wanting to change that. Nate: And my name is Nate Besio. I’m actually from Colchester, but I work at the Vermont Center for Independent Living (VCIL) in our Burlington office. I’m a peer advocate coordinator, which means I oversee our operations in the East Chittenden County and Northwest portion of the state, and our office is located on Pine Street. So my involvement has been kind of evolving since I first got involved. I got involved mainly through work as part of our systems advocacy. I had heard about the Oakledge For All project probably in its pretty early stages, I had already been involved. It intrigued me, I went to a meeting, heard about it. I thought it would be an outstanding project for VCIL and myself to get involved in. I’m a big advocate for getting people with disabilities more involved in recreation activities. I’m also a person with a physical disability, I use a power wheelchair and I was involved there from work capacity. Then I had a son a little over two years ago and it became much more personal to me because he’s at the age where we start going to playgrounds and I’m now noticing that I can’t be involved in playing with him because I can’t participate in any of the activities that he is. So it’s become a much more personal endeavor for me at this point. Julia:  Thanks to you both. Thanks for sharing. So could one of you describe the Oakledge For All project and what it has achieved so far? Annie: Gosh, I feel like we both probably could with different perspectives. So from my perspective, Oakledge For All is a beautiful grassroots effort led by you, Julia, as you know. And all of us volunteers to create something amazing and symbolic and also really fill a practical need in our community. And it’s to create a universally accessible, inclusive playground and it always, I think that is what the goal was from the onset and it has evolved and shifted as we’ve been able to start new partnerships. Maybe evolve some partnerships, and continue to persist and push and advocate for this playground. And it has not come easily. It’s wonderful, but it’s also still sometimes a little bit heartbreaking that it’s taken more than a decade to have this come to fruition. It will be fantastic. And it already has some pieces that are fantastic, but it has been a slow going project. But well worth the wait I think. That’s not a very articulate answer for what it means. And I think it’s going to be a place that again, is for not just for children, it’s for everybody, for people of all ages, but with a fundamental at the core, fundamental values of inclusion, affection, friendship, fostering community. Everyone is welcome. And I hope it will be a model for many other playgrounds throughout our community and our country. Nate: Yeah. So just to tag on to that, I have really been so impressed at everybody involved in Oakledge For All. And I see that in the fact that it is not only been it was a grassroots effort, again started by you, Julia, but the one thing that’s really impressed me about it is it’s involved members of the community and it has involved people with disabilities and parents of children with disabilities. Which when I think about when projects are made, the feedback from those members of the community are not always involved. So you have members of a law or have a cookie cutter idea of what it is to be quote unquote “accessible.” And a lot of times those aren’t inclusive and they don’t really include people with disabilities. So a lot of times when a new playground is built, it may follow the parameters of the Americans with Disabilities Act, but in the end, it’s not practical. It is something that may in order to be really accessible, it needs to be perfectly maintained all the time or the accessible portions are not integrated with the other portions. So you might have what’s called like an accessible swing, which is like way over on the side, so the children are playing over there. So the one thing that’s really impressed me about this is that the involvement of the community, the representatives are meeting the disabled community and getting involved, and quite frankly we’ve had a lot of support from the local Burlington Parks and Recreation Departments. They’ve gotten involved. That being said, it’s not without its struggles. And it really comes down to, as always, dollars and dollars and cents. And oftentimes you ask for a lot and you have to give a little bit and it’s going back and forth and we’ve seen that go back and forth through this like Annie said, a decade of working with it. But I’ve been very impressed with the progress we’re making and, for example, getting the surfacing that we’re going to be getting for the park. Which won’t be whatever the mulch or wood that sits underneath there that is a problem, but a more solid setting. So people with mobility devices can get in there. And then everything from the accessible slide to the accessible spinner which will ultimately get in there. So it has taken a while. Obviously we didn’t get everything we wanted, but it’s definitely a great start. And I think hopefully this will be a step in the right direction to other playgrounds getting built. Julia: Thanks, Nate. That was great. And Annie. So the next question here is how did you get involved in the project? And I think you did mention a little bit about how you got involved, but would you like to go into that a little bit further? Nate, I think the first time I met you was at a community charette, and then we got connected. And Annie, I met you at another community charette, which was a community input session. Do you want to speak a little bit about that? And then how we, and then how you got involved? Nate: Yeah. So you and I did meet, it was at a community gathering meeting. And I was at the meeting, and I think I remember I had a lot of questions. I was going in, it was informal, I was like, ‘Whoa, this is really cool’ the whole concept is good. And as someone who likes to participate in recreational activities, in my mind, I feel I’ve always felt like a lot of times when it comes to people with disabilities, and people think participating in physical activities, it’s like, ‘oh, well, it’s just exercise, it’s fun. It’s not important.’ And it’s so much more than that because of the psychological boost it gives to people. The integration, the ability to make friends. So it’s always been very important to me. So again, I met you and everybody else at the meeting at the initial meeting, and I just wanted to get involved. I did a lot of my work on helping to make Burlington and Vermont more accessible to people with disabilities. And I started to get involved, started going to the meetings, trying to do it from my end. And from that end, it was a work endeavor. I always hoped to participate in it. I like to play too so getting in on that, but again, my involvement got so much more when we had our son Reece, who was born. And he’s now running around on playgrounds and a lot of the times it became, it hit me more from a personal end as a parent with a disability. When we get to a playground and I can’t push my son on a swing, because I can’t get to the swing, it’s either blocked off or it’s in a mulched area where if I go my, and this actually happened the first time I tried it, I was going to the swing and I literally sink into the mulch and we needed to get three people to pull me out. Or get onto some kind of device to play with my son. I’m usually sitting on the side, I’m the person sitting on the side in charge of maybe taking pictures and stuff like that. So this hit me a lot more whole on a personal level. So I would definitely say it’s become much more important to me on a personal level. So that’s my involvement. But I’ve always been involved. I’m always intending to be involved, but it really hit a lot more home to me now on a personal level than it did. Julia: Thanks, Nate. Annie, do you want to talk a little bit? Annie: Sure. Yeah. So I think I got involved, as you both know, I’ve got twins, Posey and Otis, and at the time, I think they were about three, one of our favorite places to go was Oakledge. And back then the original playground that was built in probably the 1990s I think, and it did have a couple of bucket toddler swings that we could put both kids into. But at about three it was just becoming really challenging, really difficult to fit Otis in that swing. I remember it was painful for him because his legs are so tight from cerebral palsy and it was just heartbreaking that it became something that we couldn’t do, and it just stopped being fun. I just, like, clearly remember this, sorry, moment of Posey not wanting to go to the playground either because Otis couldn’t be included. And it was also kind of dangerous. Like we’d climb up holding him and balancing and trying to go down the slide. And he loved to slide. And that has become something, an aspect of Oakledge For All that I’m so excited about. The family slide, even though Otis is now ten. So around that time I saw, I became aware that, ‘oh my gosh, have we already outgrown the ability to go to playgrounds and my twins are still toddlers?’ Like that can’t be so. And I started to do some research are there other neighborhood playgrounds? And we heard there was a fabulous playground out in the new North End and it was like the most complex, challenging mulch surrounded, not at all an inclusive playground. And it was brand new and I was just like, ‘man, how come there are all these new playgrounds that were not built in the 1990s that are so exclusive?’ And then I saw a flyer about it wasn’t Oakledge For All, it was when it was still called Keys. And I heard about the community meeting that was happening at the elementary school down the street. And so I brought the kids and I tried to go, but I remember it was upstairs. And so I actually couldn’t get Otis inside. So my husband hung out outside with Otis and Posey and I went in and she was very patient as a three year old, and it was you and the designers talking about the plans for the playground. And it was a fascinating, exciting conversation for me. I think I was one of the few family members that was there, somebody with a child with disabilities. And so it’s really interesting to hear the perspective from, like occupational therapists and physical therapists and medical professionals. But I was able to offer some, I think, real practical considerations and just reminding folks about the kind of, the value of being universally inclusive. And there’s not going to be a ‘one size fits all’ array of play equipment, of seating, of all of these things. And it was just a really interesting conversation. And after that, you and I connected after the meeting and you said, ‘Would you like to get involved in this?’ And I was delighted and excited, too. Obviously, personal motivation for my kids and my family, but I also am a nonprofit professional with lots of fundraising experience. So I thought it was an appropriate way that I could volunteer and apply some skills I had to helping Oakledge For All get organized and do some fundraising. So the rest is history, that was about seven years ago I think. Julia: Yeah. Annie: And I’m sorry I get weepy, but I can’t help but feel sad. Julia: Annie, I wish I was there to give you a hug right now. I’ve witnessed your journey along the way and I wish that this could have happened sooner for your children. Annie: Now, I think that, as I’ve learned, you pick a project and there are these legacy projects, right? So my twins are now ten. They do still love playgrounds. We were at Oakledge over the weekend, but it’s for everyone else and it’s for the families who may not have the capacity to advocate for themselves or to know what’s not there. So this playground is for everybody. Julia: Yeah. So this is the perfect segueway into describing a little bit more about your roles with the project. So Annie, you have been incredible. You have been our wordsmith. You’ve supported our grant writing over the years, you’ve supported us. I’ll let you speak to what you’ve done, but I would just say we couldn’t have done our marketing material without you. Annie: Well, I don’t know about that. I think you’ve got a way with words, too. But I do have a lot of experience writing written communication and fundraising, and I think it becomes fundraising and requests for funding become a lot more compelling when you can share a personal story. So, like, the biggest contribution has probably been being really open and vulnerable about my own personal experience and that of my son to appeal to people who’d want to get involved and support us financially and otherwise. And the other ways that people are supporting not just Oakledge For All, but our community is that kind of that awareness of, ‘Oh my gosh, I hadn’t really thought about what it would be like to not be able to bring my kids to the playground or not be able to go to a playground myself.’ And so part of the journey has just been helping people understand about disability inclusion and how kind of, excluded our family has felt from many aspects of our of our local community. So that can really light a fire to write some grants and try to fundraise. I helped create our website and create some kind of presence for Oakledge For All so that when we were talking about it, we could point people to the vision we all shared for this playground. And that was fun and exciting and then as life happens and my kids have gotten older and in school and busy and demands of my job, I’ve kind of flowed in and out in my capacity. But Oakledge For All has always been for like the past seven years, my favorite thing to do in my spare time. Julia: Thank you, Annie. Thank you for all your time and involvement in the project. And Nate, I can think of several ways that you’ve been involved, but would you like to speak about some of your role? Nate: Well, I think I’ve had a different role, I don’t think I’ve been as super-duper as Annie has been but I think I’ve definitely had certain portions of the role. I think my big involvement was I was able to access some of the resources that I have in the recreational community and also the disabled community to kind of help advise and consult on ways to kind of think outside the box to improve the accessibility of the park and to expand on what it might truly mean to be universal and accessible. I think of contacts I have like with adaptive kayaking. I’m getting them involved and helping consult in certain areas to make sure that the beach area by Oakledge Park was more accessible. Also using my feedback, again I think when a lot of people think of accessible, they think of a cookie cutter approach to it and really kind of go beyond that. I have had some references to fundraising resources that we had, most recently the Christopher and Dana Reeve Foundation, kind of pointing the direction and which I helped make the connection with Sophie from Burlington Parks and Rec to apply and which got a $25,000 grant for some equipment. And really just providing perspective and also like Annie’s point is reaching out to people, letting them know about this project and also reaching out to people who I know who have disabilities or family member disabilities about this project and get involved. And to really help them think. A lot of times there are people who are isolated and socially isolated and maybe they just stopped thinking about coming to places like a playground because they’re like, ‘why would I bother?’ But say ‘Oh, no, no, you should come check it out. You should come do this. It’s there.’ Or even get involved and say, okay, you have a voice, it needs to be heard. Help, speak up about that. So a lot of this is help getting people involved, advocating. And like Annie, this is one of my favorite projects to be involved in. You get involved in a lot of stuff at work to help advocate for but this is definitely something that you have a personal affinity for and this is definitely one of them. Julia: Yes. Oakledge For All, go team! It’s been amazing working with both of you. And now also thinking about if people want to get started on their own projects, looking back ten years, the question here is how did this project unfold? What happened first? I’m happy to speak to some of the initial things that we did to get it started, but I think there’s a lot more that happened along the way that you both participated in. Originally, this was a leadership goal that I developed through Vermont ILEHP, Interdisciplinary Leadership Education for Health Professionals, say that ten times, and it was a project that I started as a special educator because I wanted to see my students be able to access the community playgrounds alongside their peers. I wanted to see them play and have the same joy as their peers in their community spaces. And so we got a Ben and Jerry’s Community Grant, and we found a playground designer and Rusty Keeler from Ithaca, and he helped us design this initial concept of what the playground was going to look like together with the first group of volunteers that we created. We pitched the idea to the Burlington Parks and Recreation, and they were like, ‘No, I don’t think so yet. I don’t think that’s our priority quite yet.’ And so we pitched it again and they said, ‘okay, okay, we found some champions on the Burlington Parks and Recreation Department, and we found some people who are willing to stand behind this mission and found it valuable.’ And also, we had some people speak to the Parks Commission who had lived experiences and said, ‘my child can’t access the space like your child and this is really important.’ And I think it helped. Telling their stories helped motivate the Parks Commission to realize that this is something they hadn’t thought about before and it was important. And then the Burlington Parks and Recreation Department slowly started working with us and we slowly got this project started. And I think the most important piece was soliciting endorsements and building community. So we would go to organizations like the Vermont Adaptive Ski and Sports. We would go to we went to the Vermont Children’s Hospital, we went to the Center on Disability and Community Inclusion at UVM, and we said, ‘Can you teach us what’s important? Who should we connect with? Who are some people who would want to get involved in this project?’ And from there we started doing the community input sessions where I met you, Nate and where I met you, Annie. As the Burlington Parks and Recreation got a little bit of money to hire their own design firm to create a concept design and to start asking for community input. And that’s when we had many community input sessions. And yeah, what happened from there? Annie: I mean one thing that comes to mind when you explain your early involvement is, well, a huge thank you because it’s, I feel like this project because it has spanned so much time, has really needed a leader. And I think that it’s also amazing that you’ve been able to stick with it and been so committed. And I know that you do have lived experience with disability through your role as an educator, but not necessarily personally with your family. And so that takes just an enormous amount of just love and compassion for justice and inclusion. And I think that it was important because at times I felt frustrated in other situations, like when I’m trying to get the playground improved at our kids school and they’re like, ‘oh, yeah, if that’s a project you want, you can do it. You can fundraise for it.’ And I get really hurt and disappointed by the expectation that those who are the most marginalized and left out are left to fix it. When we, speaking personally, I have a son who needs assistance and care with everything he does. And I don’t always have the capacity and time to be as involved as I’d like to with certain things. And so anyway, it’s really helpful to have people involved themselves, not because they’re being directly impacted or left out, but because you know it’s the right thing to do. And so having a kind of a coalition of people supporting this project has been really essential. And I think that it’s not just the Parks and Rec or the clinicians, the people who work with people with disabilities or kind of the ally groups, but that we are involving people with lived experience with disability to really offer input and be the, I can’t think of the right boat analogy, but like setting the direction of this. And also being kind of like the check and balances when some decisions were being made that we didn’t agree with or coming down to cost, we had to really fight and persist and advocate and say, well, why put hundreds of thousands of dollars into a mediocre playground? We need to raise the bar around what is a truly inclusive experience. And around the notion of cost, some decisions were made. The universal design is very costly, we know that. But you can also accomplish, you don’t need to have $1,000,000 playground every time. I don’t want community members to think, ‘gosh, this is impossible because we will never have the capacity to raise that kind of funding.’ I think it’s more about the process, changing the framework and increasing awareness at the municipal level so that whatever entity, if there’s a Parks and Rec department or a town is investing in the playground, that they have the awareness of how do we make this as inclusive as possible and how do we use the resources we have to accomplish that. And getting away from just ADA compliance, as Nate suggested. So getting really creative about whatever we do, it’s got to be inclusive for everyone. And I think we were able to do that back and forth with Burlington Parks and Rec but there were times where they were pitched us things that were clearly not going to check all of the boxes for us and we had to say ‘thanks, but no thanks.’ That is not going to be what we’re trying to achieve here. And anyway, so, yes, that kind of constant continuum of having community input, which it can be really tiresome and exhausting and I think there are times where I was ready to check out if it weren’t for you, Julia so thank you. Julia: Well, vice versa Annie. I mean, I had three children through this through the past eight years. There have been times where I have been very stretched thin working full time and being a full-time mom of three children. *laughs* And I think our team pushed me through. The fact that we had our community and you also really helped motivate me at times. And I think it takes a team. You can’t do it alone and it takes it takes a team. And also, I think about, we’ve had a variety of different volunteers who have been able to come in and out over time, people who have had the capacity to help for a couple of years, and then they step away and someone else comes in but I think at the at the core, we’ve had our mission, we’ve had our vision. We’ve been able to keep going, keep chugging along. And that’s been really helpful. Yeah. And I think to just add to that, Annie, I also think we have learned a lot. I myself have learned a lot along the way about what is universal design and what does a universally accessible playground look like? We’ve had playground designers come, I remember some playground equipment folks pitched an idea for a piece of equipment that they said would help children ‘affect the play of others.’ I was thinking, ‘What? So they push something and then someone else has fun? No, that’s not universal design.’ So we’ve been very thoughtful about each piece of equipment being hopefully as accessible as possible, in theory. So hopefully in practice it will be just as fun. Annie: Yeah, I think they said simulate fun, right? Like it could be on the side, kind of simulating the fun that all your friends are having on the actual play structure. It was awful, anyway. Julia: I know. So Nate, do you want to add anything to how the project unfolded along the way? Nate: I think Annie covered a lot of that. I do want to say thanks to you also, I was not aware of the struggles early on, which I do look at the buy-in now from a lot of the places. And I do know like, even with the Burlington Parks and Rec, even though a lot times it does come to dollars and cents sometimes, it’s something they’ve bought into and are committed to helping. So when you’re telling us initially they said no thanks, the advocacy on your part has been incredible. My early involvement thinking about what you’re talking about was really what you’re talking about. It was mainly us having meetings on park design, budget, how to raise funds, giving proposed designs of the park, what could go in? Okay, what can’t we pay for? What can we scale back? What do we keep? And I keep going back to the all accessible spinner, which you know, which people in wheelchairs and mobility devices can’t get into. That was a big part that we wanted and I remember someone from design said ‘Well, let’s get rid of that’ and we’re like ‘Well, no.’ That’s very important to us because that’s a big integrated design that will let children with a mobility disability or people use those spinners. I remember us advocating and to Annie’s point, really just the involvement of the community of people who have life experiences, it’s really getting that and getting the feedback from people like that. And then just going back to all the times we thought we were making progress and then we got hit by this pesky pandemic in 2020 that really put a halt to a lot of things. A lot of halt in funding and just waiting for certain funds to come that were there, then weren’t there and waiting for approval of it all and just still staying the course of working on it. Those would be my most memories of us. It was just looking over the schematics, talking feedback, being told one thing, pushing back for another thing and reaching something that really, while not super perfect, got everything you want, is definitely an improvement and with the idea that we could build upon it at a later point of time. So those are really my admissions of it. It really just goes back and forth, really focusing on fundraising and designing a park that is going to be truly universally accessible and also that works for everyone. Julia: And so what do we think of the outcome so far? Have we noticed any reactions in the community? It’s not quite, we should say phase two is not quite done yet but the hope is that it will be done by the end of the summer. We’re waiting on a part for the large family slide, but phase one was opened in 2018 and that was the swing section. And now our next section will be the spinner, as Nate said, and a large family slide. So what have we noticed? What do we think about the outcome so far? Annie: Well, I mean, I’ve noticed my family goes to Oakledge all the time and just the swing area, which, I wish had more swings. That can be phase three!. Because it is so popular. Right. And they are swings that everyone can use. So I’ve had a lot of people from around the community, at our local school, just out and about, say like, ‘oh my gosh, that playground is beautiful. Congratulations.’ I’m like, ‘Oh, that is just a little preview of what’s to come.’ I mean, they were just talking about the swing area. So I think that is definitely working to raise awareness and have that ‘aha’ moment of like, ‘Oh, this is what inclusive, intentionally well-designed play spaces can look like.’ And the joy that comes from seeing all members of our community being able to access them. And so I think people will be really excited and odd when they see the grand finale of phase two come to fruition. And I also think that it’s not just the physical manifestation of Oakledge For All that’s what we should celebrating, it’s the systemic change that we’ve fostered over the past decade. And where we’ve come, as, you know, our municipal partners saying, ‘no, this isn’t a priority for us,’ which we heard for the first few years I was involved, to now even as recent as last fall, another playground went up in Burlington in record time that was not even ADA compliant. And that to me was like, ‘gosh, have we not made any progress?’ Like, how can this happen? And I think that as devastating as that was and still is, it’s another neighborhood playground, it did create this like sea change of like, ‘oh my gosh, like we can’t keep building playgrounds this way.’ And why are we going to keep building playgrounds that leave members of our community out? And it doesn’t just benefit the people who are left out, we all benefit when we can connect and foster friendships. None of my kids friends want Otis to be left out from the play. And this magical thing happens when people connect and form friendships. And so anyway, I think that that kind of hopefully systemic change of kind of shifting how we view playgrounds and investments in our resources that now our local community will do a more thoughtful job. Julia: Mm hmm. Nate: Yeah. So I’m really excited, I just can’t wait. And I totally get why there may be delays there’s nothing you can control in terms of the fabrication and making of it. But knowing that it’s coming just really gets me excited. It’s like when, when, when? But already after phase one, I can also tell you that swings that were in downtown Burlington, that’s the place we go so my son can go around and I can literally this way get to the swings or either go on the one swing. I’m able to get in on it. It’s fantastic. I do know that community partners I have including my own organization. They’re like, ‘When is this park going to open? We want to have some kind of event there. We really want to hold something there to celebrate this and invite community members.’ And other groups I’m involved with are really asking about it. And even with VCIL, the organization I work for, it sometimes gets inquiries from people from out of state coming into the Burlington area saying ‘what are some things to do?’ And I do mention the Oakledge Park. This is coming, I don’t know if it’s going to be here when you get here, but it’s something to check out. And it’s not just the playground itself. I do think the overall area is nice. I mentioned this already, there’s already work being done to the beach area which will allow people in mobility devices to get down to the beach. There’s a nice ramp that we’re working on, mats that will allow people to get on. I know that they’re redoing the bathrooms so that they’re accessible and I think even have some adult changing tables, which is something that is really very hard to find. So I think just overall, it’s a really big push. And I will say I think what it has done also, is it has put for playgrounds the idea that we should really check about accessibility. I do serve as chair of the Burlington Advisory Committee on Accessibility and I do find that more and more meetings, Burlington Parks and Rec is coming to us saying ‘we’re planning some things, we would like the feedback of your committee on how to make sure they’re accessible.’ And I know that’s all have to do with playgrounds and certain parks and making sure. So I do think what it has done, it has planted a seed in the municipal entities that we need feedback. We need to get feedback from community members to make sure this is not just accessible or ADA compliant, but beyond that. And again, it’s still a work in progress. I’m sure we all know some projects that have been built that really could have use the feedback from the members of the disabled community. But I think it’s a good start and I do think that this has helped plant the seed for some of the other projects. Julia: Great. And so the next question is, do either of you have a background in accessibility of the built environment or civic action? And can you speak a little bit about that? Nate: Well that’s my job, really. *laughs* I’m an advocate, so I’m involved in a lot. I’m now in more of a management role so I supervise the PAC’s, that’s what we call the Peer Advocate Coordinators. So what we do and I still do, is a lot of one-on-one advocacy for people with disabilities. So somebody with a disability, they might be trying to find adaptive equipment or a ramp to get in and we all help them get the resources to be built. Or they’re trying to find a job and maybe want to know about the laws regarding employment disability and maintaining their benefits, we help people understand that. A lot of it is with accessibility, making sure, they understand. I am trained in understanding the laws of the ADA so I have a pretty comprehensive understanding of how the Americans with Disabilities works. Definitely know of its benefits and drawbacks. So I do a lot of work with systems advocacy, meeting with municipalities and businesses, really advocating them to make themselves accessible and not only the law requirement but the benefits of inclusiveness. And I also do trainings. We do ADA 101 trainings, various trainings on different aspects. So it’s really my job to do that. So it’s also something I have a personal passion for. Obviously, for somebody with a disability who has been physically disabled since I was a young teenager, it’s something that my parents really ingrained in me early on. Like, ‘Know your rights, know your rights, advocate for yourself.’ But they helped me and it’s something I want to pass on to everyone else because progress does not get made without advocacy. And one thing I like to tell people in the disabled community is all the time people are making decisions that are going affect your life and they may not be wanting your feedback. So they are going to make decisions that affect you and the only way you can do that is to get involved. And that is something I think is very important to try to push for. Annie: I don’t have Nate’s technical expertise at all,  but I have the practical expertise of being a mom of a child who uses a wheelchair. And so I have that hands on experience, and then I do have a lot of experience in civic engagement. I’ve been in the role as an executive director of a current nonprofit for about 15 years and involved in nonprofit work for many years prior to that. So my entire kind of adult life has been devoted to working for organizations that work to create social change and have social change missions. And then I do have a long history of just volunteerism and kind of getting involved in different efforts that are near and dear to my heart or that can benefit from my time and expertise. And then this was a clear, obvious choice for our family. So definitely personal benefit there, too. Julia: Thanks. And so the next question is what was the most satisfying part of this project or what has it been so far? Nate: I think for me, even though it had its delays, was when they actually started breaking ground on building this new part of the playground and actually going down and seeing it, seeing the construction vehicles. Now, granted, it was, I think in the so they had to pause for the winter. But actually seeing all the vehicles really breaking ground, it’s like, ‘oh, wow, this is actually happening.’ And I think that was for me, the most satisfying from my end. Now it has been delayed unfortunately, because they’re still having to fabricate some of the parts and that’s been delayed. But knowing that this is actually happening for me was really like, ‘oh, wow, this is really satisfying.’ And that will probably be trumped by actually when it’s done and seeing it, but knowing that all the advocacy, all the fundraising had come to something being built and ground being broken for me was very satisfying. Annie: That’s a hard question. The simplest answer for me is the first time we went as a family for the ribbon cutting of the swing area and seeing my kids, Posey and Otis swing together. That was probably it. But I think also kind of seeing our partners at the city step up into a really like authentic partnership role has also been great because I think like we’ve petered out and there’s been delays that have been exhausting and kind of incomprehensible like why is this playground still not built? And they stuck with it, too. They have been persistent advocates because they’ve probably had pressure from leadership outside of their department to maybe skip over things or reprioritize things and they have stuck with it. And they have added in things back that maybe got cut previously, and they have I think, done a better job than in the very early days at listening. And so I’m appreciative that we’ve had that. Julia: Yeah, I agree. I think one of the most satisfying parts of this whole process has been that we have so many champions now that I think are willing to listen and willing to change and also make other playgrounds more accessible in the future in Burlington. I think , I just love going and sneaking by Oakledge and just seeing people accessing, just even the swings for now. It just brings me a lot of joy. And to know that it’s beyond us now. It will be the communities and it will be for people who are visiting, it will be for everyone. And it will be a place where friendships can be built. So yeah. And so the next question is around the project itself and whether or not it has changed your view of disability or accessibility. Has this project changed your views at all? It certainly has mine and it’s changed mine and I could speak to that later. But I’m curious if it’s changed your view of disability or accessibility along the way? Nate: Well first of all, I didn’t know there were so many cool things out there for adaptive equipment. So I looked at some and an adaptive spinner, how cool is that? Somebody can get a wheelchair on there. Or the adaptive slide. The fact that they are out there is pretty cool. So I think there seems to be an encouraging and discouraging part of it. The encouraging thing is that there’s all these great things out there. I think the disconcerting things is just how hard it is to attain them. And just how unwell know or something that is specialized for a group individuals. And when you think of people with disabilities, it’s a much larger group than people would envision, and also it is a group that anybody at any point could join. So you think a disabled community and all of them, and it’s something where as the population ages people may be part of, but how difficult it is to find this adaptive equipment and also how expensive it is. And really the only way to bring that down is to normalize it, to push it, and making sure it’s more widely distributed. So I definitely think that the good and the bad part is, there’s great items out there. There’s people who have put thought into this. It’s just very difficult to obtain. I think for me, and this is something I’ve always known, is just really changing the attitude of things when it comes to accessibility. And it’s still definitely out there. I think it has changed for the better. I definitely think about when I was young with a disability, interacting with people the way they treated the disability as now, being older, dealing with the next generation. I definitely see a difference in the attitudes. But it’s still just how, a lot of times making accommodations or integrating people with disabilities is still an afterthought. Or there is a ‘they,’ you know? ‘What will we have to do for them now?’ And it should be more like an us. Which I’ve known about, I grew up in that, but it definitely brought forth just looking at people saying, ‘well why would we do that? Why would we want to include this?’ We have this little swing, this little bucket swing on the side. Shouldn’t that be enough? That is still something that’s very discouraging but I do see a shift in the younger generation. It’s change I find very encouraging. Again, I think it’s slowly, at an iceberg rate, changing. I definitely would like to speed it up. But there are some very cool things out there that help inclusiveness, it’s just really making sure they’re brought to the forefront and more integrated. So, I don’t know if that exactly answered the question but that is some of my thoughts. Julia: Thank you. Yeah. And how about you, Annie? Has this project changed your view of disability or accessibility? Annie: Oh, gosh, yeah. In many ways, and I think similar to Nate’s perspective, it’s like in some ways reinforced my fear that there’s just so much more work to do and just how we continue to as a community make these huge public investments and spaces that continue to be exclusive. Not just like physically inaccessible, but if there’s the thought of including a ramp once you get inside, they’re not designed for really thoughtful, intentional, inclusive participation and engagement. Thinking about Burlington High School underway, that’s going to be a brand new, beautiful building that’s signature entryway symbol when you get into the building, is a giant staircase. And so the fact that designers, decision makers are still not thinking about members of the community with disabilities is really hard. So yes, I think Oakledge For All is a symbol of progress, but all around us there’s still so much more work to do. And yeah, fundamentally it just comes down to like shifting and I’m really sick of the narrative that it costs too much. And like when I think about building any sort of building, it’s like well you know, windows cost money and they continue to rise in cost, putting windows in structures, but we don’t build structures without windows and doors. And so kind of thinking about making our physical spaces, the infrastructure more inclusive is something that as a community we can throw money at that problem. You throw money at that problem and you can hopefully then foster the shifts in attitude and in people’s hearts and awareness and minds. But if we still can’t get in the door, people with disabilities, then we can’t participate and be part of that cultural shift and social change that needs to happen. And so, yeah, I think attitudes are shifting, but it sometimes feels like incomprehensible how much more there is to do in my son’s young life so far. Annie: But I’m optimistic that there’s more people keeping at it, you know? Julia: Well, Annie, you made me think of two examples of how I’ve learned through this project. One is that I remember you would tell me that when you would go to Portland, Maine every playground had an element that your son could access. And it was just part of their paradigm, it was part of their built environment it sounded like. I don’t know if you can speak to that a little bit, but it got me – You know, we have such a great, strong relationship now with the Burlington Parks and Recreation and Waterfront and we’re really encouraging them to build into their policy, into their mission and vision. The idea that in the future, every playground will think about universal design. That was one thing that I learned along the way, is it’s just not part of the paradigm always. Vermont is way behind. I would travel to California and I would see these playgrounds that are amazing and take back some of the ideas. And it was just part of what they do. Annie: Yeah. Julia: So often. Annie: Here it is an afterthought or it’s checking the box on what’s legally required, you know? Julia: Mm hmm. And I think about a visual that we’ve used over the years that I think has been really effective. It was designed by Michael Giangreco who was a professor at UVM and connected to CDCI and it told the story, it was a true story, in Vermont of a child who was waiting for the ramp to be shoveled and the custodian who was shoveling the stairs said, ‘when I’m done shoveling the stairs, I can get to the ramp.’ But the student said, ‘But if you shovel the ramp, then we can all get into the school together.’ And I would argue that why not just build ramps? I mean, it’s probably more cost effective anyway than stairs. *laughs* If you build a ramp you have one universally accessible way to enter a space, for example. Annie: I reference that all the time, that image, yeah. Julia: Yeah. It’s definitely one of the things I’ve learned along the way, and it’s been a humbling experience for me too. I’ve made some assumptions that I think were harmful along the way too. And I’ve learned, Annie you’ve taught me and Nate, and I think it’s just really important to listen to people who have lived experiences and to just yeah, just listen as much as possible. Annie: I think I’ve learned that, too, because I know that my lived experience is very different from somebody else with a disability. And that disability affects every individual so differently. And that’s been one of the challenging pieces about creating a universally inclusive playground. Because what works for my kiddo with a wheelchair may not work for somebody else. Right? And so how do have the most equipment with the most likelihood that everyone can participate has been a work in progress. But I feel like we’ve nailed it with Oakledge For all. Julia: Yeah. And so just wrapping it up, we’ve got a couple more questions and then I think what is, if you could each give one piece of advice to other people who would like to see their own playgrounds become more accessible, what is that one piece of advice that you would give them? Nate: I mean, I guess my own piece of advice is don’t be afraid to speak up, get involved very early. Go to find out whoever is building it, whether it be the local Parks and Rec community, the school, and provide your feedback, attend meetings, don’t take no for an answer. Make sure people see the benefits of it. One thing I didn’t mention is yes, providing universal accessible is more expensive, but it may also be more expensive in the short term. So up front it might be cost, but in the long run, it actually might mean not spending as much over time. Again, I think of surfacing with mulch versus a more galvanized rubber. Which mulch might be effective you know, it might be less expensive to put it down, but you really have to maintain it and take care of it where the more rubber surfaces are maybe a little bit more sturdier to last over the long run, but really try to see the benefits and try to get as much people involved as the community. And again, it’s not easy. All three of us are very busy people. We have a lot going on, but it won’t be done unless people speak up. So do your research, find out what’s accessible and make your voice heard. And that’s the only way that you can really get involved. And seek the feedback of other projects that have been made. So look around and see what’s been done and seek that feedback. That’s what I would say, yeah. Annie: Yeah, I mean, I’d echo that and I think I’d probably have different advice dePending on who’s taking the lead and initiating the work. I think if it’s a municipality or a like a school district or some kind of entity like that that’s wanting to do that, I would just encourage that time for authentic, inclusive participation by those who are currently left out and not able to access playgrounds. And really taking the time to do that and not just listening to a vendor tell you, ‘Oh, yes, this is it. This is the equipment you need and your problem is solved.’ And then if it’s somebody like me that’s wanting to create that realizes there’s no place for their kid to play, I think it’s like being really honest and persistent and being direct. I mean, I had to have some really difficult conversations with people I know and respect through my professional role in the city about, why are we doing this as a city? Why are we continuing to invest in these exclusive places? And kind of give some harsh feedback that was difficult and emotional to share. But you have to do it and you have to keep advocating and I think be willing to be vulnerable and also brave, because if you don’t speak out, it’s clear that it won’t be a priority. Until we create that systemic change where it is a priority and it’s just we have a whole new rubric for how we create play spaces in our society. But yeah, so just be a fierce advocate. And if that isn’t your strength or something you like to do, recruit a friend who will help you. Julia: Thanks. And so the last the last question is what is one word that you each use to describe the project? Nate: One Word? Persistence. *laughs*. I guess it’s definitely one of persistence. I mean, we’re going on what? Eight years I think? I don’t know how long eight, nine years? I mean, so it’s not letting go of the proverbial rope, making sure it doesn’t escape, making sure you keep on pushing. It is one of just constantly working at it and pushing and advocating. So in the end, maybe not getting everything you want but really making sure you have something that’s inclusive, making sure you have the feedback of those who are being impacted and who are most affected by the park are heard. And it’s going to be ongoing. Like I said, even after this will be done, it’s going to be okay, it’s done, it’s great, what can we do to add on to it? Oh, there’s a playground being built over there. Okay, let’s see what we could do to make sure about that. It’s just staying on top of it, being persistent in the future and to continue to go after it. So I’d say persistence. That’s the first word that comes to my mind. Annie: The word that came to my mind is love. I think for many reasons, I think just fundamentally, when we create opportunities for friendship and connection and love, we’re creating a stronger community and everyone benefits from that. And it’s been a labor of love, this project. But yeah, it just comes back to, yeah, I think that this is going to be a symbol of friendship in our community. And I know I see firsthand how, when my son is authentically included and able to participate, the profound joy that is on everyone’s faces, not just the young people in the room, but everybody gets to celebrate this friendship. And that to me, seems like the most important thing to come from this. Julia: Annie you said it perfectly, and Nate. And I will add joy, which I think Annie said. But it makes me think about one of our initial members who offered a lot of advice along the way, who is Deborah Lisi-Baker. Who was one of my professors who inspired me to take on this project. And Deborah — and I’ll quote — she said, ‘This park promises a place where all people can play together and be together. Universal or inclusive design brings us all together.’ And isn’t that what design should be about? Making community possible? And it’s about joy, right? It’s about coming together. So, thank you both for being here today and telling your story and telling our story of Oakledge For All. Annie: Yeah. Thank you, Julia. It’s very much your story so I’m glad that you chimed in. Nate: Yeah, yeah. Thank you.     Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

https://youtu.be/Hs2zqprOxtw In this episode of our podcast, CDCI Community Services Coordinator Adrienne Miao connects with Michael Shor. Shor is an autistic psychologist, an advocate for people with autism, and a member of the CDCI Community Advisory Council. A full transcript of the episode appears below. Adrienne Miao: Hi everyone! Welcome to the CDCI podcast. My name is Adrienne Miao. I’m one of the CDCI core function coordinators. I’m the community services coordinator and I work as an OT [occupational therapy] consultant on several of the projects with the I-Team, the Continence Project and [Pediatric Professionals of Vermont]. And I’m very excited to be joined today by Michael Shor. Michael, do you mind introducing yourself? Michael Shor: Not at all. In terms of the the Center on Disability and Community Inclusion at UVM, I’m on the Community Advisory Council, which is basically a place where people with different relationships and perspectives, around disability can participate in shaping what the organization does. Otherwise, apart from that, I’m a person on the autism spectrum with a number of various neurodevelopmental diagnoses, like ADHD and various sort of, subtler differences with motor function and things like that. Professionally, my sort of main job is I’m a psychotherapist. I work out of a practice called St. Johnsbury Psychology Associates, with people across the state. And aside from that, I’ve also been working with the UVM Autism Collaborative and doing a certain amount has consulting and facilitation with some community-based research projects related to the autism spectrum. So that’s professionally. Did your question cover other areas too? Adrienne: If you’d like to share anything about your personal interests or what you’re engaged with this winter, that would be fine too. Michael: Yeah. Yeah, that’s cool. So personal interests: I am really actually quite interested in a lot of things. I’m a — I call it scientifically-minded person? But really I’m interested really in the whole science, technology, arts and sort of spectrum. And do things actively in all those all those areas. One of my big interests is neurodevelopmental differences. And as someone who was started to be diagnosed with neurodevelopmental differences, maybe… I guess it would be going on about 30 years or so ago. Maybe that would put me at 10, or something and probably even a little earlier than that. And trying to understand things about it always sort of piqued my interest. Dealing with living in a not always very neurodiversity-friendly world, also had lots of challenges and also interesting sides to it as well. And so, I ended up using my strengths to kind of both deal with those kinds of things and also to sort out how to do the things I am good at without a lot of interference from external and internal issues. So that got me driven to really understand the science, the social issues around these kinds of things. By social I both mean societal, and I also mean like interpersonal. So since then I studied psychology and then got a master’s degree in social work. I am a practicing therapist working towards independent clinical licensure. And then after I started doing that at some point I wanted to take the opportunity to get back into research. So I ended up jumping on an opportunity at University in Vermont back around 2017 with a new doctoral program that was there, and really looked at getting more involved with autism research, which is something that I had always wanted to do. So that’s the sort of my quick “long intro”. *laughs* Adrienne: Thank you so much. And we’re going to dive more a little bit into your both your career interests and your research interests, but I’m wondering just for anyone that may not be as familiar, could you just describe what you mean when you say “neurodevelopmental differences”? Michael: Yeah. So that’s a complex question worthy of an answer. By “neurodevelopmental differences”, I mean — well, okay so on the most basic level, I mean I have a diagnosis of autism spectrum disorder, for example. (Or we’re generally kind of going more towards calling ourselves “autistic people” at this point.) And attention, the attention issues and things like that. So but what they really are is variations. On the basic level, there are variations on how the brain is structured and functions for a variety of biological reasons. And so some types of variations happen, like after you’re born, sometimes they’ll start appearing when you’re an adult. So for example like, the core symptoms of schizophrenia, for example, are an adult-onset mental health condition. With neurodevelopmental disorders generally, there’s really some aspect of them that exist when you’re born. And over time, you don’t necessarily see all the differences immediately unless you look very carefully or some of them just don’t really show up until you sort of, go into situations where you use those parts of your mind or that kind of thing. So that’s why they’re considered developmental. And some neurodevelopmental differences you can measure the day someone’s born if you do it carefully enough and some take time to kind of see. And the other aspect of the neurodevelopmental differences… So when I was first diagnosed, autism was existed in a category called “pervasive developmental disorders”. And in some way I kind of like that term in the sense that because it’s not like, you know, you grew up and you had a stroke in one part of your brain and it just sort of stopped doing what it was doing. It’s more like that most of these things affect function across a lot of different areas of processing and stuff. And so the symptoms we use to make the diagnoses or the features to make these diagnoses are just limited part of of what the actual experiences and maybe even loosely tied to the underlying biology of it. Adrienne: Thank you. You took a really complicated question and gave a really clear answer. Michael: *laughs* Adrienne: And I appreciate that, Michael. You mentioned you received your diagnosis when you were maybe around 10 years old? And I’m just curious: did you grow up in Vermont? Michael: I grew up in West Virginia. Are you curious about the diagnosis, like what the history of that is? Adrienne: Only if you feel inclined. Yeah. Michael: No, no, I think it’s interesting. I mean, I think it’s interesting. I think just from a societal view of the fact that, you know, I was born in a time that stuff was just evolving. When a new set of diagnostic criteria came out pretty shortly around when I was diagnosed with it, that made it more easier to get one of these diagnoses? On paper? And I grew up in a small private school, and I started having learning issues where the way that I was taught different things just wasn’t working very well. And that’s really what spurred getting a evaluation done. And we ended up driving like two and a half hours to U.V., the University of Virginia to get a sort of multi-day assessment kind of done. And that’s where they said, you know — they, you know, gave me sort of various kind of learning disability kind of oriented diagnoses? And then they sort of said, “And it seems like there may also be–” they just called it “pervasive developmental disorder”, which isn’t actually a diagnosis; there’s pervasive developmental disorder not at the right specified, but they didn’t really say that. They were just sort of putting me in that third general category. And then also: “And we think you might have ADHD, too.” So those are the bigger ones that I tend to talk about, but like really, I was also diagnosed with like dysgraphia, meaning difficulty in like handwriting, and working with that. I wasn’t diagnosed with dyslexia, but I really have dyslexia too. I was kind of kind of fine motor coordination issues and that kind of thing. So I had this sort of whole host of things that came up at once in that process, and that’s what got me there. And eventually I got an Asperger syndrome diagnosis. And then as an adult when they switched that over to ASP, we you know, switched that over. But. Adrienne: I’m curious when you think back now, what it was like for you to receive all those diagnoses, that information: was it helpful to you? Did you feel like it made a difference for your education? Michael: So yes. But how it was, I think the diagnosis was mostly helpful, but I think in some ways it wasn’t done as well as it could be. And then I also– so like with the learning stuff, which is what  my family originally had taken me there for, we tried to kind of quickly make changes in my schooling situation with that. So through the public school system, we got what they call additional services kind of stuff, which was like some occupational therapy and speech therapy. And the reality was some of that was fairly useful and some of it was fairly mixed. Didn’t got really great academic accommodations in a lot of ways with the stuff and never really did, honestly? And so since that was part of the purpose of it, I think there’s really not nearly enough either research or intention — at least at the actual like, educational level to really use that information well. I think even today it’s extremely backwards, the lack of real systematic modification. And obviously, like, you at a college level, you see almost nothing other than sort of like time accommodation being done for like, learning differences. And really that’s mostly what the sort of K-12 places I did was willing to do at most and that’s really not enough. It’s not an appropriate approach to solving some of these things. So it was mixed. The autism spectrum thing, we just didn’t really know that much what to make of it, honestly, I think at the time. And until I was like 16 and like actually saw some documentaries on this thing, and was like, “Wait, yeah. That really is me, and that starts to explain some stuff” it just didn’t mean that much. And I had talked to some practitioners who had some pretty misleading views on what the autism spectrum was. So I kind of assumed that they knew what they were talking about. And that maybe I really wasn’t on the autism spectrum. But I really was on the autism spectrum. And the ADHD thing: so much rhetoric around ideas like it was being over-diagnosed and drugs were just suppressing function and sort of stuff, that I realized over time, like — you know I’m not saying that medical management of ADHD is always good in the way it’s done, but I felt very misled in the end when I started to use medications for it as an adult and was like, “Oh, you know, that could have really changed my life in some very positive ways if I had really understood it and used it as a kid in a useful way”. So yeah. Adrienne: Do you feel like a lot of your personal experience is what has driven your interest: in neurodevelopmental disability, in this field, in psychology? Michael: Yeah I mean, it’s a little bit of a combination of it. …Wait, can you repeat the question? ‘Cause I just blanked on what you said. Adrienne: No problem. I was just wondering if in your personal experience, you feel like the gaps that some of the gaps that you saw in your own experience of the health system, the education system, have led to your current interest in being involved in this kind of research and advocacy? Michael: Yeah, yeah. And I should say something else about this too, which is: like, well, before I had a diagnosis, I always knew I was different in a lot of ways from a lot of people? And everyone else knew I was different in a lot of ways from other people, too. And so I did learn things as you know, they got diagnosed or understood — that kind of thing. But the other thing about it is, is that like… so like, the core features that you get diagnosed with with autism, I do see them as disabilities in some ways, I see those as things are useful to like, address and change to some degree? Which is think maybe is a more controversial thing to say than I wish it was now? But the other side of it is that that whole spectrum of having a brain that functions differently has a lot of different aspects to it, and there’s a lot of tradeoffs to it. And it’s not so simple as like “this is a disability” or “this is not a disability, and this is just great”. Really it’s a combination of these kinds of things, some of which are like really things I value about myself that come from not being neurotypical. And then there’s… so I always understood that I had strengths from things, and things that really [inaudible] sort of my individual personality and stuff out of it. And what I ran into was a situation where it was like, once I dealt with the public school system, really, they were theoretically willing to try to do kind of remedial stuff around disability things? Although not very good remedial stuff usually. But there is never the focus of doing that because like, hey, I’m a human being who has a life path that needs to be supported in the process. And so the areas of strength that I had, you know, kind of really got pretty short shrift in the process? And really actually also getting like support and accommodations in the areas that, okay, so the product of what I was doing may have already been beyond typical, but that doesn’t mean I don’t have a disability in the execution of the things involved in doing those things. And so that really that — that one version of living on the autism spectrum that exists and doesn’t really get talked about a lot today. So like for me they’re really like… I mean, in a certain level, the only reason I care about being able to actually address and change some of the limitations of the disabling aspects of some of these things is because they are in the way of like, what I want to do, and what I believe in and that kind of thing in my life. Or or at least how they interact with my environment is in their way. But I think a combination of both. And so I really wanted to help people who have things that are important about them, be able to develop them and express them and, you know, like we have a lot of… If you’ve been exposed to the background — for people listening to this — if you’ve been exposed to background about neurodiversity, like there’s a lot of talk about like, you know, there are strengths and unique things we bring to the world, but maybe not enough focused on really looking at actually what they are, and actually how to support their development. Like consciously? And I think it’s really important to do that from a young age. And I think actually even over time, we may be getting worse at that? Not even as good as when I was a kid in some ways? And in the guise of getting better at dealing with the more of the deficit, sort of this kind of aspect of it. And so, yes, it was my own experiences, but also when I got into college and started meeting other people with these diagnoses for the first time — at least the first time I was aware that I was meeting other people with these diagnoses — I started to realize, like: I also had some really, really difficult experiences with all this growing up, and I also had some really very good experiences too. And I think despite the difficulties, my experience is so much better than average, honestly, for people who are affected by the disability as much as I was. And I really wanted to sort of try to understand how to kind of resolve that because I, you know, met people who seemed very like they have really wonderful things about who they are and what they, you know, bring to our community potentially. But like, the reality is that a lot of us are depressed. And a lot of us don’t really have access to the ways of expressing those abilities. And so people who really, in a lot of ways objectively would have an average level of function as a human being, but just in different areas and distributed differently, who haven’t been able to work, find relationship and other kinds of things like that. And I just really felt like it needed to change. And as I started and continue to actually learn about it, I realize sort of like how ignorant the field has been, honestly? About the actual experiences and perspective that exist because, you know, at least a lot of us are able to talk. We can potentially articulate these things. We have the full spectrum of levels of intellectual function that exist in the rest of society. And yet, like when I started this, I couldn’t identify a single major autism researcher on the autism spectrum 50 years after diagnosis, had been described, right? I just felt like it was important to change that. Because things that like typically developing people might consider like a base validity — for people not familiar with base validity I meant it appears like it might be possible — but through the things that may appear possibly true about autistic people, the people who don’t really maybe have the experiences themselves or even maybe know a single person who really does on a personal level, can come to conclusions that are wildly inaccurate. And they can do research that costs hundreds of thousands of dollars based on premises that I could have told you in two minutes that this wouldn’t work or this wouldn’t come up with a useful outcome. Adrienne: So you said a lot of powerful things and we will talk a little bit more about scientific priorities. And some of your research interests. I do want to go back and just say I want to correct myself. I think I said “neurodevelopmental disability” and you said “neurodevelopmental difference”. And I know you said that from an early age you felt different than a lot of other kids. And I want to go back to when you first started to identify with a larger community. I think you mentioned that when you went to college, it was the first time that you really were able to have a regular interaction with other people who maybe were more neurodevelopmentally diverse. And I’m wondering if you could talk a little bit about how you picked the college, what the college experience was like and sort of how you started to first get into advocacy. Michael: Well, slight process. So I said that I went to elementary school at a private school, so I went to seventh grade, skipped eighth grade and went to ninth grade at a public school and started having a lot of problems and my health had deteriorated. So I ended up homeschooling through high school. So that’s one of the things that affected my sort of educational course. I ended up focusing my education on areas that I was good at learning and mostly kind of good at learning on my own because I couldn’t really get a lot of the kind of support I would have wanted in the areas I had trouble with. I had so much of a problem with math and the school situation that I never really was able to get it. It became kind of a PTSD thing, where just looking at a math problem I got a migraine kind of thing. And so my interest has always been in the sort of science and technology realm as much as anything, and there just wasn’t any really easy way to bridge the gap to where I’d want to be with that. And I had trouble with organized writing and that kind of thing too, even, you know, like typed and stuff, which was better for me. So I had to look for places that I thought that I would function well enough given the fact that I knew that I probably wouldn’t be able to systematically get any kind of better accommodation than more time to do things. That became clear as I looked for colleges. The other thing is I was having problems with fluorescent lighting, that I think maybe now may have been as much of a sort of a PTSD response as that there are real sensory problems with it, too. But I think they melded together and started triggering things like migraines for me. And so I had to find a place that would accommodate that enough for me to go through that. My experience was I just wasn’t able to sort of kind of prove that to people. And a place wouldn’t want to actually take it seriously and would accommodate that. So I looked for places that were a bit more alternative and a bit more flexible in their education, not so oriented toward conventional grading and stuff like that. I applied to a few places. There’s not really a lot of alternate more alternative colleges that exist, and there’s, I’d say, even less now than when I applied. But I applied to a few places that looked decent and I got into Burlington College, which unfortunately is not in existence anymore. But it was a great educational experience for me in a lot of ways. I was able to focus on the conceptual aspects of what I wanted to learn and it was challenging that the main sort of output modality was writing, there, but at least that was something I could get help with and work with on a timescale that made me able to do it versus like tests or something on class. And I did end up becoming a good writer in the process and stuff like that. But I guess my point is: if I had the strengths I had and I didn’t have the disability that I had, I probably wouldn’t have been that interested in neurodiversity per se, and I probably wouldn’t have taken some of the stuff though, seriously. And honestly, I would have probably become a physicist or an engineer or something like that. Adrienne: Yeah, Well, and I loved how you described it that, you know, we all have things that we want to change about ourselves when we talk about, you know, things that we we may change, but we also all have interests and strengths that we would like to develop. And that, you know, is the hope of education, is that we can do both of those at the same time. I think that’s a really lovely way to describe it. So, okay, take us a little bit past Burlington College then. How did you kind of make the next decision about work and education? Michael: Okay, so when I got out of B.C, I had double majored there. I did a psych major and independent consciousness studies major. And the first thing that I thought of going into was consciousness studies as a field and sort of towards the end of that. And Burlington College is not a research-based institution at all. So I hadn’t really had a lot of opportunity to have contact with that world at the end. So I went through the Tucson Conference on Consciouness, which is a great conference, but and started to talk with people about, well, like, what about graduate school and what would I be looking at doing there? And I started to realize that’s a very small, undeveloped field in a lot of ways and the opportunities that existed weren’t that interesting to me and would be hard to get into with the background that I had. So my other big interest with the autism spectrum stuff. And so I was like, well, okay, I will apply to a bunch of research-based programs that my qualifications sort of theoretically fit for and that are researching autism in ways that I thought was interesting. And I did that. And so as I got through some of those applications — which was hard to do too, because I had to deal with things like GREs and stuff, and they were really horrific to deal with at the time about disability stuff and possibly still are, I don’t know– Adrienne: Were you able to get accommodations for the GRE? Michael: I was, but by the time I did it actually like made it so that I couldn’t even get some of the applications due in time. And it took so much time just to even get some of the disability accommodations dealt with and stuff, that it also took away time to study for the stuff and really kind of be prepared and stuff. One of the things a lot of people don’t realize is one of the huge issues around disability is just how recalcitrant places are about really providing accommodations and how much legwork that they require to do things that that should be super easy. Anyway, my point is that like I got applications in on time, maybe two to four of those places. And then then I was like, Well, what’s my backup at this point? So I started looking at what my options were that I could still apply to once I got through the things that were most important to me. And I applied to a couple clinical programs at West Virginia University, which was, as I say, more of a backup plan than anything else. And I didn’t get in to any. I didn’t even get interviewed for any of the autism ones that I did, which I think is interesting because I actually did have a decent background, and I talked about being on the autism spectrum and, you know, my interest in those kinds of things and stuff. I honestly felt it was rather rude for a place to not take enough interest to at least find out if I was a decent fit at that point, if that’s what their whole program is… *laughs* You know? Adrienne: Yeah, it’s surprising. Michael: Anyways, I was like, well, I could try applying to these things again, which would take me at least a year. And I don’t know if I would be any more accepted than before, although I could do GREs and things like that, or I could take two years and do the social work degree. So the social work program was the one program I actually got into that I had applied to and I was like, you know, maybe I can actually get some research experience because that was definitely the biggest feedback that I’d gotten about, you know, that people want research experience to do research. And so I took that program. I did everything I could to both get research experience during a clinically-oriented degree and also to get background in autism spectrum stuff and focus my work in that area. And so I ended up doing both of those things. That was what happened there. And when I’m in the middle of a program like that, too, like my ability to focus on like what the next thing is, isn’t that good, realistically. And so I decided to go ahead and try clinical work before trying to go back for research for a while. Adrienne: And can I ask: I’m curious how your clinical work in social work has– how that sort of changed your engagement with your interest in autism spectrum disorders? Michael: Yeah! A lot! Both: *laugh* Michael: Well, it was interesting. I mean, first of all, by that point, I’d gotten so many different perspectives and exposure on things and you know, so much also practice while living at an adult rate just with it that was also changing my perspective on things. But doing clinical stuff… when I started, I did some kind of intensive mental health things for an agency first when I started, but then when I really, really decided to become a therapist — and that didn’t work out super great for me for various reasons and stuff. One of the things I realized that I was doing it is that like the emotional impact of working with people in sometimes really difficult situations and situations that maybe overlap challenges that, I really was still having or, you know, dealing with in different ways and dealing with even just the prejudices of parents and other people in the situation is very difficult for me. And I really couldn’t handle really doing that full time without a lot of sort of work on sort of how to be able to work with that? That’s one thing that sort of kind of changed my interest and perspective with things. The other thing is when that first job wasn’t really the right thing, in the end, I decided to create a private practice. And I really thought about like: how do we work with other neurodiverse people? And I created something called the Mental and Social Health Center was my idea. My idea was to eventually make it into an interdisciplinary practice. And really try to offer a variety of stuff like community-based services and counseling, but things like occupational therapy and speech services or something, but in kind of high quality neurodiversity-friendly ways. So that was my idea. My first thing was just to be able to do it and do the work and figure out how things work. So I went into it without having any direct traditional psychotherapy experience yet. I mean, the thing that I did before that was basically family counseling to a degree, but this was different. And it was interesting. So I found that bringing in and experiences around sensory things and that kind of thing was really helpful. I think it’s one of the more under-appreciated aspects of the condition. And every so often people try to like remove the whole category from the diagnosis? And in fact I think they did that with the latest ICD criteria — yet again. I just think it’s a really bad direction to go because it’s so functionally relevant to how we experience things. I realize I’m giving sort of long sort of complex answers and, you know. Adrienne: Well, it’s a complex topic! And no no — I think you’re bringing such an interesting perspective because you have occupied all these different spaces and roles, both personally and in your work and in your own experience with the education system. So I want to go back. I do want to ask a little bit more about research, and I know some of your interest in sort of design and in sensory awareness, but I wanted to ask first about I know you said in college you started to interact with more individuals — and certainly in your work you were serving a lot of families and individuals — with autism. I’m wondering sort of when you first saw yourself becoming an advocate and and how your ideas around advocacy have changed sort of over time. Michael: Great question. So I’ll break that down I guess into two pieces. Okay. So first is the question of when I first time I thought of becoming an advocate. I thought of myself as becoming an advocate when I was a teenager. So actually, really before that, at least in terms of self-advocacy, but I always knew that I wanted to address the societal issues around that. And even before I, you know, I saw myself doing disability advocacy specifically, it, you know, in one way or another was something that I really wanted to do in some way, as long as I can remember. Like it was always like just kind of part of my personality, I think. I’d always had the interest in it in some way or another. Once I went to college I did get more experience doing it more hardcore and really I had the intention from the beginning of like — I mean aside from choosing a little bit of an alternative place to go, I also wanted to choose a place where I could potentially influence the function of it and really be involved. And so being somewhere really small, I decided to take on any kind of student role that I could where I would have access to like impact stuff with it and learn about that. And so that’s one side of it. The other is that there was a pretty active electronic community of mostly parents of people on the autism spectrum at the time in the Burlington area. And I got on their listserv and kind of you know introduced who I am, you know. And so I met one person who really through his mother who is an older autistic adult through that, and became friends with him. And also just really tried to understand, like, what are the effects of this? At the time he was in a group home situation, for mental health, group home oriented… and over time he ended up getting his own apartment and that kind of thing there. But that shaped on my interest really, having his experiences. And I met one or two people with different neurodevelopmental differences that my college and that kind of shaped it. In terms of actually doing direct advocacy for other people, as soon as I really started having conversations with people with similar experiences and who were who were having difficulties with things, I really wanted to apply the skills that I had to giving them ways to, address things in their own life, and also just using my own ability to actively, directly advocate for other people or advocate for the changes that were needed for the people that were around me? And I would say: so I’m a system thinker, naturally. Although historically, like one-on-one social stuff hasn’t always been that easy for me. Understanding like more like group dynamic social interactions and like kind of things that are organizational level and stuff that’s more intuitive. So I’m kind of a strategic thinker. Even when I was like a teenager, I thought like that I would find like, maybe like, like studying law interesting. And I also realized that I would probably, you know, just bang my head against the wall every day if I was a lawyer with how much I would be bugged by it, too. (Just giving a perspective.) But policy was always interesting to me, too. And so I guess one of my strengths like to be able to learn a lot of different conceptual and structural stuff about a lot of different systems and ways of thinking and kind of trying to tie them together to solve problems so that, you know, I think where some of the neurodiversity strengths come in. Adrienne: How did you first hear about CDCI and and become involved working with CDCI? Michael:  How did I hear first hear about it? When I first sort of started really looking at it was when I was a student at UVM and looking at different disability-oriented resources and stuff around the University. If you search on “University of Vermont” and “disability”, CDCI will quickly come up. And so I think that was how I first really became aware of it. And I did a training that was cohosted with the Vermont Family Network and Vermont Developmental Disabilities Community Committee (or I forget what it’s called) . But anyway, they have something called Vermont Leadership Training. And I did that. And, you know, again, started looking at actually like maybe apply to some committee and stuff, to be actively involved in in the area to do things. Once I was out of out of college and had some time that I wanted to put into it, I really wanted to have some way of being connected into the community of this kind of thing. And I applied to join the Community Advisory Council there. Adrienne: Can you talk a little bit about with what it’s like to be on a community advisory council, and what you do? Michael: So it I think that it depends on exactly what role you choose to take on. The very basic thing is that we meet four or five times a year or something, formally, and the staff at CDCI presents some of what’s going on, some of the topics they’re looking at and that kind of thing. And being on the committee it’s a different opportunity to provide feedback with that but also offers an opportunity to get to know the people on the committee and also the people who are presenting things to the committee and and discover if there’s opportunities you want to engage in more interaction with — like what we’re doing now. So, I see it personally as like it’s both a vehicle for formally filling an advisory function, but informally just to know what’s going on, and to give input on things so that things can sort of evolve and change and stuff. Adrienne: And so and you’ve been involved now for how long? Michael: I think it feels like about two years or so. Maybe. Yeah. I’m also involved with the UVM Autism Collaborative, which has some overlap and stuff and things too. And so that also blends together in my mind a little bit. Adrienne: Yeah, Can you talk a little bit about your experience with the Collaborative? Michael: So I joined that after I was a student there and you know, when I found that sort of committee and I just wanted to kind of get back involved with sort of research-oriented stuff, and sort of bringing an autistic perspective to the picture. And so that was interesting. I think at first when I was doing it that it was kind of a new thing. And there was a variety of levels of whether people were actually really collaborating with research or just maybe talking about different things they were doing in the place and stuff. And I felt like there still wasn’t a lot of really sort of participatory research being done really in terms of a lot of UVM autism researchers, depending on what kind of research and stuff. So I really wanted to also give input and see like some evolution towards both just sort pf more organization about having really good research done at the University and also more integration of like: how do we capture the perspective of autistic people and get them presented in a meaningful way? A lot of times in my experience in life, if I go in a situation and say, “Hey, I have this experience, this is a problem, I know it’s an issue.” Like there’s either a direct, or instinctive response people have of like, “Well, you know, you’re one person, you have one perspective.” But that perspective may have had 2,000 hours of education and focus behind it. But you might not notice that or something, right? So I think there’s there’s also in some ways the power in numbers about getting participatory research done and having things echoed by different people and even just knowing that like something that seems like a very clear from experience. Is it right? Is it limited to one portion of the autism spectrum or me personally or something and they don’t realize it? So I think I can say that what I’ve brought is part of the reason that we’ve started really doing some larger participatory research projects out of out of UVM. And I’ve ended up being like a part of a couple of both of those projects now as a sort of limited employee with it. And it’s been a really great experience to do that and have a chance to participate in a way that structured so that like it isn’t super overloading to the difficulties that I have in the situation, and using some of what I’m better at in that process too. Adrienne: So I’m going to ask an unfair question because it’s such a big question, but you’re raising this issue of how to make research more accessible, more representative, more inclusive. And I wonder if you might be willing to just share some thoughts about where we should be heading. You’ve mentioned the need for more participatory research. You’ve mentioned how narrow really the pool of researchers is that it’s not very representative. What would you like to see as some of the next sort of steps to make research more accessible for more people? Michael: Well, I think the biggest both long term thing is that the education to be a researcher in a conventional sense of being a researcher, needs to be accessible to everyone who has the desire to do it, really. And by accessible, I both mean like literally, like: can you even qualify for whatever it is, right? So like my experience of not even getting into the program was one piece of it. So there’s a lot of level to it, right? If you haven’t gotten adequate support for all your K-through-12 education and then you don’t have a conventional background, like why is that required just for anyone who doesn’t have a conventional background to really be successful in shifting towards the research environment. And I think just promoting that level of diversity in research-oriented sort of programs would be a major advancement for research in general. Even for people who don’t have a condition or something associated with it, because it brings a diversity of life experiences into it. One of the problems can be that research can be so expensive and difficult to get into that that may be all that someone’s actually been able to do in their life, that data where they’re doing it. It’s expensive to have the resources put in, for people to be able learn different things, try them,, and then not use them in ways that are considered highly productive in those areas. But there’s a benefit to having the opportunity to do that sometimes, and to try things can change things. I think one of the things, you know, is that having a more experimental mindset and willingness in certainly the educational system to say, “Well, like hey, lyou might not bring something that’s super conventional but if you bring something unconventional, how do we really support you in that situation?” And that would be a major shift. Even if it’s not through a conventional educational path, you know, later on, like now with like trying to just get people in the community involved in specific research projects, to start with, it’s the same mentality required: having that flexibility and adaptation to say, “Okay, like, you may not be able to work a conventional work schedule. How do we provide the wraparound to make this work?” Or: “You may not be able to count on having the same level of ability to focus on a task at a specific time, but you would want to. How do we make this adapt around it?” And so some of it exists at the institutional level, and some of it a problem with things like funders and stuff. I think eventually we need to talk with places like NIH and stuff about how they conduct things like grants and stuff and really, you know, make some of that more accessible too. There’s a whole other level, though, where there’s a lot of focus on precedent with research, essentially, basically? And that’s not exactly how the research community talked about it, but if you’re trying to design research, the easiest way to do it is to mostly copy someone else’s. And it doesn’t mean that you can’t apply for a grant to do something really original with NIH and data. But it does mean it takes an incredible amount of time to work the basic theory of things and to find the justification for doing something that like, experience might tell you is important. f there’s not more room to cite experience and to talk about experience in the process. So that’s part of the reason I think it’s just so important to do some of the qualitative stuff that I’m involved with and haven’t described. But to get some of those things that say, Hey, this is a reason now to test this, and to look at it using other research methods and stuff because we’re limited by that paradigm of, you know, precedent. So the other point about this is like, I think for, let’s say like an institution like UVM, it’s not super easy to do this kind of stuff in some way. The cost of living in most places that you can do this kind of research is high, and you have to be able to pay for people to have a reasonable lifestyle and researchers and stuff. Then you have to be able to pay to do the research activities too, right? But then also, like good science, really requires room for creativity and experimentation and and taking chances and things like that. So I think part of the problem is that we need society to recognize that it’s important to fund things in a way that that’s possible. And we don’t have to be super conservative about all of the approaches being done to things because like it’s lots of people scrambling for a very tiny amount of resources to do something. Adrienne: So can I ask you to talk a little bit about some of the research that you are involved in and some of your own research interests? I know you mentioned some of the qualitative components. Michael: Yeah. The research team currently involved with iss funded by the Patient Centered Outcomes Institute, which is something that’s newer, and created by the Affordable Care Act. So a lot of people aren’t as familiar with it at something like NIH, but it’s actually, I believe, a bigger funder than NIH is, just in terms of how much money that that a grant does get. I learned about that kind of when I was a doctoral student. But what we’re doing now is sort of starting to lay some of the basic framework of participatory research in in the Vermont community. So the first thing we wanted to do is actually collect information on what people feel like they need, to be involved as research partners. So that’s the first project that we’ve done is basically to try to conduct some focus groups and other sort of qualitative methods of getting feedback from people in the community,  including from from parents and people on the autism spectrum, and sometimes sort of providers and other people too. When the first project was just basically asking basically, “Well, what do you need to show up? What will make you feel comfortable? Like how do we do this correctly?” And then the second project that I’m involved with is around health care transition, so that’s really transitioning from child to adult healthcare. But effectively, that means you have to understand what’s happening with adult healthcare too. And child healthcare and how to make it work better in both of those things. So my interest in some ways is a lot about just improving both those systems. I think the transition process is bad, but like if the systems worked right, that’s not the biggest problem, honestly, the transition itself? But I think I think like our society doesn’t like to acknowledge adults with disabilities in a certain way. The closer you have to children who are perceived as like more sort of innocent, the easier it is to get people to want to, like, embrace solving a problem. And the other reason is that people like want to make problems go away early, which is in some ways if you can and they’re just problems, and you’re not getting rid of something important, that’s fine. I agree with that. You know, like, I think it’s great to try to support speech development in young children and stuff and and make it clear that people aren’t dealing with the sort of emotive consequences of things? But anyway, the so we’re looking at health care transition partly because, you know, there was an opportunity to do that that was created somewhat externally and we took it and we’re making it the best that we can with that paradigm, which is a good enough starting place in my opinion, to start asking these questions and stuff. And so really the other component of all of this is just all the internal stuff that goes into figuring out how do we do this stuff? How do we do it right? Where do we run into challenges? We’re also actively really researching that from our own internal process of the people involved with the neurodevelopmental research at UVM really haven’t done this stuff before, mostly at least. And so we’re kind of learning and inventing stuff as we go along. And I think it’s actually like even the sort of subtle background stuff that we’re doing? Is pretty pioneering. I think  in the areas we’re looking at, like we really didn’t find equivalent projects mostly in the past. There were some around healthcare transition, but mostly it’s not been done that much. Adrienne: Wow. Michael: My research interests are are broad. I’m interested in being involved in a variety of things, but definitely I’m interested in facilitating the existence of participatory research, and getting that going and getting things documented in terms of different ways people are experiencing things. My interest there is partly to make sure it’s done well because I think often if you don’t ask questions really carefully, like you’re not really giving people an opportunity to express themselves who haven’t had a lot of practice talking about a specific issue. And you can not see the depth of what’s happening. So that’s why one the reasons why I want to be actively involved in that kind of thing is to just make sure it works right. My personal interests though also go a lot into more like the realm of the neurocognitive demands of things. So like, ideally, I would love to see more youth — like I think some of the things that inspired me when I was really trying to look at going that direction years ago were like there’s been a lot of research doing things like functional imaging of brain processes but virtually nothing done to actually utilize that information? And nothing done to make that research even useful to the research participant? And I feel like there’s powerful cognitive tools and even, you know, like research tools that could be used to help better understand individual people in certain ways that I’ve been really — I think the potential of that been really misunderstood by the research community and honestly ignored. Okay, let’s say with something like attention, for example. I think that’s one of the areas I struggle with most now in my life, is to be able to intentionally focus on specific things and, really be able to be productive in them on some level of a schedule with it, which is really helpful, even aside from all the external demands and maybe overt demands on that kind of thing, to be able to say, “Hey, I really like this. I’m going to choose to put aside five  hours at 2 p.m. and do this activity” and to be able to count on my brain working well at that time would be helpful. And I think there’s a lot that we can do to understand what the barriers to the different cognitive processes are, and how to facilitate them and how to accommodate them, that we’re not really using the research tools we have to do. If I really had the ability to really do what I want to and have the resources I’d want to, which would probably include a lot of ability to delegate pieces of things, I would probably try to get into some of that area and really advance the development of it and stuff. But I guess if I had my personal dream, I would really be able to facilitate a program of research and try to really integrate things across different and tools and other kinds of stuff, build good theory around things so there’s no pathway for theoretical research that really exists in the field. But a lot of times like, you know, all the research that’s been done is just integrated, haphazardly at the beginning and end of experimental research papers that not really, I think how we should be doing it. And so like that’s the other kind of thing too: trying to understand everything, building theory around things that integrate like knowledge and then communicating it at different level of communication that really provide things from even very simplified plain language stuff to complex stuff that gets into the full depth of research but it is friendly for either a layperson or a person not familiar with a specific area of research. It’s possible to do things and understand things and stuff. And the other piece of that  communication side of things that I think of lot of times in my field, is that things are thought of in terms of services and stuff. And I think for a lot of us on the autism spectrum, information can be the service sometimes. Like if we have information that really tells us ways of looking at things differently, doing things on our own, do-it-yourself is a really powerful tool that that avoids a lot of potential conflict with providers. It avoids a lot of funding issues, and if we have things accessible, I think that would be part of the big change of things to. Adrienne: That feels like a really positive note to end on. I think we could probably talk for hours and maybe we’ll come back and talk again, but I just really want to thank you for your time for sharing so honestly from your own perspective, as well as just your role within our organization. And we really appreciate the work that the Advisory Council does to help inform the design and the direction that the Center’s work takes. Is there anything else that that you want to say at this juncture? Michael:  I think it I think it’s a good place to kind of wrap things up. I would say that it’s been definitely nice to have the opportunity to talk about some of this. And there were things I think we were thinking of talking about that we haven’t had as much opportunity to as we could. But I’ve enjoyed the opportunity to just really express some of these ideas and stuff, and I think it’s not easy to talk about this stuff fast, because there’s a lot of experiences to communicate about that don’t overlap most people’s everyday lives. So I do hope that we can potentially do more of these conversations and because I think the way we did it today is great and it takes a long time to get at  some of the most valuable things. So yeah. I look forward to any, you know, future version of what we do and I hope anyone watching that has gotten a lot out of this. And so yeah.     Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

https://youtu.be/lngsQprGl50 Dr. Valerie Wood hosts an episode of the podcast that looks at the recent RISE VT project: Restorative approaches Implementation for School Equity in Vermont. Her guests are collaborators on the project: the CDCI’s Amy Wheeler-Sutton, and UP for Learning’s Lindsey Halman. Together, they explore what they learned through the course of the RISE VT project, and where they hope restorative approaches for Vermont schools go next. For a research summary of the RISE-VT project, visit go.uvm.edu/cdciresearch A full transcript of the episode appears below. Valerie Wood: All right. Welcome everyone to this episode of the C D C I Connects podcast. I am your host today, Dr. Valerie Wood, and I am a research assistant professor at the Center on Disability and Community Inclusion. And I am so happy to be joined today by Amy Wheeler, Sutton, and Lindsey Halman. so let’s start with you, Amy. Could you introduce yourself? Amy Wheeler: Yeah. I’m Amy Wheeler-Sutton. I’m the co-director of the Best project, which stands for Building Effective Supports for Teaching. And we are housed at the Center on Disability and Community Inclusion at U V M. We’re fully funded by the Agency of Education to do training and coaching and technical assistance for supervisory unions, districts, and schools for them to be able to better support the social, emotional, behavioral and mental health needs of Vermont students. I used to be a school counselor in a school that was implementing Positive Behavioral Interventions and Supports, or P B I S. Valerie Wood: So Lindsey, could you introduce yourself? Lindsey Halman: Yes. Hi. My name is Lindsey Halman. My pronouns are she, her. I am the Executive Director at Up for Learning that stands for Unleashing the Power of Partnership for Learning. We are a nonprofit based here in Vermont, our office in Vermont. We work with schools, elementary, middle, and high schools throughout the state. And we also work with schools throughout the country along with organ organizations that we partner with the our organization really focuses on three things. So what is, or the why is that in order for schools to really change and meet the needs of all young people young people need to be at the table to have a say in their educational journey. and so that is what we call Youth Adult Partnership are what is whatever the schools, we facilitate a process. So it’s whatever the schools or districts are focusing on as their lever for change. And how we go about that is through Youth Participatory Action Research. So all of our youth-adult teams engage in YPAR, Youth Participatory Action Research to make change in their school communities. and our office is in Montpelier, but we work, like I said, throughout the state and throughout the country. and a lot of our work is focused on the social-emotional components of schools, the climate and culture. And we do a lot of work that is focused on restorative approaches within the school setting, but bringing youth and adults together to understand what that means to transform a school that really is restorative. Valerie Wood:  Thank you both for those introductions to your work and a little bit about who you are as people leading that work. I just wanna take a moment to express appreciation as we’ve had the opportunity to work together. I’ve really learned a lot from both of your teams about thinking about what does youth-adult partnership look like and how we can, we can be infusing more of that in the different efforts that are happening around the state in different areas. And then thinking about what I’ve learned from the best project and the PBIS implementation and thinking about the relationship between what’s the kind of knowledge and skill base that our teaching professionals need to be able to engage in that work with students in the most positive and affirming way possible. So thank you all for the great work that you’re doing because we are at the Center on Disability and Community Inclusion. I did just wanna dive a little bit more deeply into how you see your work touching on issues related to disability, and in what ways does you know, your work help elevate or meet the needs of people or students with disabilities? So, Amy, let’s start with you. Amy Wheeler: Yeah. So while PBIS is for all students and to help the educators to support all students, the systems and data, and practices that are implemented as part of PBIS particularly support those who have or are at risk of having social-emotional or behavioral challenges or those with disabilities. And so as we are doing all of our work, we’re really thinking about how can we best design environments that are gonna be inclusive for all students, and particularly those who have disabilities. and thinking about our you know, connection with Lindsey’s work and other sort of approaches as we’ve kind of evolved over the past few years, we are really thinking about how we can infuse restorative principles into all of the training and coaching that we do, and really thinking about how student and staff and family voice can be elevated and at the forefront of what we’re doing so that things are being done with others rather than two or for them. We also help schools think about the alignment and integration. like you mentioned, there’s a lot going on in schools right now. Lots of different efforts and projects and work and thinking about how all of those can be aligned. Valerie Wood: Great, thank you, you shared a lot. There’s a lot to unpack there, and you’re starting to touch on some of the work we did together, but before we dive more deeply into that Lindsey, could you just talk a little bit about UPS role in helping to meet the needs of people and students with disabilities? Lindsey Halman: Yeah. So at Afro Learning one of our core values is that we believe that educational equity is a basic human right. And so for us, that means ensuring that there is inclusivity and accessibility in every aspect of a school, of, of school life. And as a former educator, I was a middle level educator for 15 years in inclusivity and accessibility and equity were really at the center of everything that I was thinking about. cuz because we know it up, and I knew as an educator that if I center those, those components, then everyone is gonna, you know, be able to access their education and, and it’ll be engaging. and hopefully it will allow for success for all young people. So if we really center inclusivity and accessibility, that means that everyone, everyone benefits ultimately from that experience. When we work with school teams, we really sup work hard to support the adults on the team before we even begin to think about how they can create a representative team that is reflective of their entire school community. And even once we get going with our work, we ask the question to the youth and adults who’s at the table and who’s not at the table, and how do we ensure that we can make space for those that that maybe have not always been asked about their opinions and ideas regarding their educational journey. And so that is a question that is always on our minds as we are doing this work throughout the entire cycle with teams, is how do we make sure that the voices that have not historically been heard, how do we bring them to the center of this work or to, you know, to really amplify those voices. Valerie Wood: Great, thank you. And then I’ll just share my role on the projects that we’ve worked on together was as the evaluator and as I’ve had time to reflect on what we learned from the work we did together you know, my lens is really systems improvement and what does it take to create a more inclusive, equitable system that allows all people to thrive and experience positive outcomes. And you know, it, it’s kind of the season where you know, kids in the public school system recently brought home report cards and I was thinking about, you know, the grading system and this kind of idea, like it’s not re if a student is quote, failing, it’s not really a student that’s failing, it’s the system that’s failing. That system has failed to engage that student in appropriate ways that tap into their natural curiosity, their natural motivation for learning. And so, you know, I have so much appreciation for the work you’re doing and thinking about how you are contributing to systems change. So all students are kind of in a supportive educational environment. Lindsey Halman: Yeah, I think, can I just like put an exclamation mark on something you just said? Is the idea that someone’s failing a class or, you know something is a systems issue, it is not about the, the individual, the young person, and yet at the same time our young people are receiving those messages and therefore they are then holding that piece, which is so much bigger, it should be so much bigger than, you know, them feeling that they, you know, either shame or failure or, or frustration or whatever those feelings are, that’s then what we see as a reaction to the system, right? So what we’re trying to do as a team is change that so that those kinds of, you know, that we understand how, what are the things that need to happen in a system in order for young people to not ever feel that they are a failure. Because really that is a mark that is the report card for the system. Valerie Wood: Thank you. Yeah. And for the viewing and listening audience, I think they’re getting a sense of how our different philosophical approaches are really complimentary and we’re all kind of pushing the system in a similar direction. but let’s kinda bring it specifically to the Rise VT project. so that is an acronym which stands for the Restorative Approaches Implementation for School Equity in Vermont. so the acronym the the approaches was not capitalized, which from a grammatical perspective was maybe not great, but we wanted an acronym that would make sense for us. And let’s do a little jargon busting just to level set for the audience. so Lindsey, I’d love it if you start off like, and I ask this question of both of you, cause you, I think you both have slightly different things to add here. How would you define restorative approaches? Lindsey Halman:Yeah, that’s a great question. so restorative approaches sometimes people hear restorative justice, restorative practices. I like to think of it under the umbrella of restorative approaches because it is an approach. it’s a paradigm shift, it’s a philosophical shift of the ways in which we go about how I would say our daily life. But when we’re thinking about the educational system, it’s a real shift in how we approach everything from behavior to relationships, to curriculum to policies, to the structures and schedules. So when we kind of take this like new way of looking at a school from a restorative lens where it’s about this concept as Amy shared earlier, this concept of width, instead of doing two and four we, we look at it with a new, kind of a new framework that what would it look like to develop really strong relationships where people feel like they are in community with one another so that they are in a community that cares about them, that knows them, that knows their name, face values and stories. And then from there, what happens when we have conflict or make mistakes in communities? How do we support young people and adults in, in school communities in thinking about what happened and the impact it has on community, that ripple effect and what they can do to make things right or make things or to move forward. and then it’s also about looking at our, you know, our practices is a way in which we go about teaching. Is that a restorative way? Are we doing it with young people or are we doing it two and four young people are policies? Are they about two and four and kind of punitive and following, you know, being compliant? Or are we asking young people to develop the skills to have agency to feel empowered to understand how they can access an engaging education? So sometimes I think restorative approaches gets lumped with like restorative justice, but that’s just one element of it is around like, how do we create different systems around what we might call like discipline that are that really center relationships that center a young person repairing relationships with themselves, with others in their community. but it’s so much more than that too. It’s not just about when things go wrong, it’s about really kind of looking at a school through a very different lens and what would happen if every step along the way. It was about seeing each other as full humans and centering relationships and getting to understand what each of us bring as strengths, but what also what are our challenges and opportunities for growth and and supporting one another in that way. I’ll pass it over to Amy to add to that definition cause that was a lot. Amy Wheeler: <laugh>. Yeah, I don’t know if there’s anything to add. but for us, I really think about, you know a whole school approach that’s really taking a proactive proactive creating the systems for proactive healthy school climates. really slowing things down from the pace that often education is operating within to be able to create space for people to learn about one another, develop strong and deep relationships and then rely on those relationships when things do go wrong so that people are invested in the relationships within the school building to be able to really think about what are others’ needs what can we do to heal and move forward. and to, to have that be the approach rather than thinking about, you know, what rule was broken or how can someone you know be punished or have a consequence for when something goes wrong, but rather think about how can we work together to identify the needs and the harm to be able to, to heal and move forward together. Lindsey Halman: Yeah, I was just gonna pick up on something that Amy said. I think that’s like a key piece for folks is that our schools tend to op, operate from a very reactionary place. And this is really getting folks, you said the proactive how do we build stronger communities? How do we make a climate and culture that when you walk into school, it feels, it feels good, right? And I think we’ve all had experiences where you’ve walked into a place and you can, and it feels really good to be there and, and into in a school where it feels joyful and there’s engaging learning, but we’ve also had the experience where we’ve walked into places and it doesn’t feel that way, that it feels it just, you get kind of that gut feeling or you can feel kind of that the climate and culture doesn’t really feel joyful and connected. And so we’re really, you know, the goal is to support schools, like Amy said, that whole school approach in building those proactive practices and skillset. And it’s a mindset shift. So our mental models, many of us who are adults, we did not function. We did not grow up in a system that was restorative. And so it takes a lot of time to change those mental models. And so that is the paradigm shift that you really need to take that time, as Amy said, slow down to really start to practice a different way of being. Amy Wheeler: And I think for me, like when I think about it in my personal life, what really hits home is that idea of when something goes wrong rather than pushing people away. So in a school setting, you know, sending a student out of the classroom or detention or suspension or for my own child, like send her to her room, you know, like rather than pushing people away when things are going wrong, how can we bring people closer and hold people closer to really solve the problem? And I think one of the misconceptions about restorative approaches is that it’s maybe a soft approach or it doesn’t hold people accountable. And I think the biggest aha for me was like, we’re actually, people are actually having to work harder to be held accountable than when they’re simply pushed away and, you know, serving an in-school suspension or an out-of-school suspension, and then they just arrive back and nothing has changed. They haven’t had to do any work to repair what has gone wrong. and so for me, restorative approaches is actually a more active form of accountability than some of those more traditional approaches to discipline. Lindsey Halman: And I would just add an also another piece to that too. I totally agree. And our, our many ways, our traditional system, the punitive discipline system or our ways of just kind of transitioning from one class to another, you know it creates a cycle for young people. And one thing that is really at the that’s important when you’re learning about a restorative approach is really looking at the neuroscience, the brain-based research around it. We’re, we’re talking about young people whose brains are rapidly developing. And this is a time for us to be, well, first of all, relationships are key to that development, positive relationships and recognizing that we all make mistakes, but particularly when we’re younger because we’re still, our brains are still developing and forming, right? And so it’s an opportunity for us to really then dig into the neuroscience, the understanding of how our brains work and, and how our brains develop. And knowing that when we take a restorative approach, we’re actually helping create really healthy, healthy development in our brains and connections in our brains so that we can be more healthy, productive adults later on in life. Valerie Wood: Yeah. I appreciate what you both shared, and it makes me think about the idea that as you’re going through school, from an academic standpoint, you’re learning something new and you know, you practice, you practice new math problems, you practice, you know dissecting new pieces of literature, and it’s expected that you make mistakes, right? You’re not gonna get 100% on the test without that practice. And so, you know, when I think about what you both shared, it’s like socially and emotionally restorative approaches has that same frame of reference that young people will make mistakes, they should be allowed to make mistakes, but what is the response to those mistakes? Is it very punitive and kind of saying, okay, well you broke a rule. And sometimes, you know, the rules are very subjective and they’re very like culture-bound. and so some students, you know, that are coming from different cultures may not even be aware of a rule where they may not buy into the value of that rule. And so I really appreciate that a restorative approaches allows for that dialogue and that conversation to understand the different points of view. And yes, there are times where harm has happened and so that definitely does need to be addressed. But I agree with you, Amy, that it’s actually holding people accountable in a way that’s like because it’s more person-centered, it’s more powerful that it, in a lot of ways it’s easier just to be sent off to the principal’s office and you just sit there and you don’t obs the student does absorb any lesson from that versus to hear from other students, this is the impact your behavior had, and this is how you can make this right. but yeah, it is a paradigm shift, and in a lot of ways, as we learned helping teachers understand what it’s gonna take to do it and do it well is really important. One of the things that I appreciate about our team is that Amy, you brought a lens, and I know Lindsey, you have this too but I’m gonna pass this question to Amy. But thinking about restorative approaches within an mt s s framework or multi-tiered systems of support, so you’re kind of our resident expert on MTSS at CDCI. Could you tell us a little bit more about what a multi-tiered system of support is, why it’s important, and how it relates to restorative approaches? Amy Wheeler: Yeah. So in Vermont, we kind of rely on the Vermont MTSS field guide, and that really outlines, you know, that MTSS is a framework it’s adaptable and should be made contextually relevant for each school or district. but it really helps bring together all of the supports that are available for students so that all students do have an equitable access and outcomes from their school experience. And so really thinking about what systems need to be in place what data should schools be looking at to know whether they are seeing success how can they approach things from a perspective of continuous improvement and really thinking about and examining areas that are places for growth within the school. Thinking about how all of the adults collaborate together, what different roles people play to meet the needs of students, and thinking about how they can best organize their resources effectively and efficiently to meet those needs. relying on the kind of collective expertise of all of the people that are involved in education from the educators to the students, to the families. And also really thinking about community partnerships and directly, you know, kind of tying Vermont MTSS to restorative approaches. all of those key components need to be in place and developed in order for restorative approaches to really be a school-wide approach. So we know there are some schools where individual teachers have been trained in kind of implementing the practices side of restorative approaches and that’s great that that teacher’s gonna have a positive impact on the students that they touch. But in order for all students to really experience kind of what Lindsey’s talking about, about this, you know, kind of transformation of education to be coming from a restorative approach, it really has to have this kind of systems-wide framework and perspective to be able to make change in that way. And then I think the other kind of key piece of MTSS is that every student gets the level of support that they need. So for restorative approaches, we would hope to see that all students are experiencing a restorative approach in all of the ways that Lindsey mentioned, you know, in the design of the schedule and the curriculum in experiencing those proactive community building circles at the universal level and also at the staff level. So having opportunities for staff to slow down and create space and come together to learn more about one another. and then when those you know, challenges do occur and things do go wrong, how can we amplify and intensify the supports that are provided for students to be able to get at what needs to be repaired. And then in the most extreme cases when, you know, students have needed to leave the building, whether it’s for an alternative placement or an out-of-school suspension or something like that, how can we make sure that they are reintegrated into the school community in a way that is supportive and reflective of all of the needs that are at play. And I’ll turn it over to Lindsey to add anything I might have missed about that kind of connection between MTSS and restorative approaches. Lindsey Halman: I really don’t think you missed anything. I would just say that like, it’s I would just say for anyone, our listeners out there that one of the most important components is that like you, you people don’t look at these things as separate, like restorative practices or what restorative approaches, M T S S, you know trauma informed that they all are part of the MTS system, MTSS system that you’re really thinking about, you know, what do all people need in our community? What’s gonna help us be the healthiest, happiest, most engaged learning community? And then from there, you’re looking at then individually what individuals need to, and for them to be successful. But all these things are integrated into that system. So it’s not an, it’s not an add-on or another you know, initiative. It’s a, it’s should be part of that system, that tier one level system or the integration of all the different supports. And I’m not sure if that really was an add-on to what you said, Amy, but just that I don’t you know, we often hear that restorative practices is just another thing that we need to do, but it’s not, it’s really part of that it’s part of the system building and it’s both the engaging all people in learning the same practices and then applying some more personalized support to those that might need it at particular times. Valerie Wood: I have a question for you, Amy which is, do all schools in Vermont use an MTSS framework? Amy Wheeler: So it is in legislation that all schools do form a multi-tiered system of support within their buildings and districts, and I think different districts and schools are in different places in terms of their sophistication with MTSS, but that is the kind of design and hope of Vermont education is that all schools are engaged in multi-tiered systems of support. Valerie Wood: Thank you for sharing that. And it, it sounds like a really valuable framework that they can utilize to help organize their efforts and kind of you know, make sure that there’s collective efficacy that everybody’s kind of working in the same direction towards shared goals. So let’s talk specifically about the RISE T VT project. again, just to repeat that acronym stands for Restorative Approaches Implementation for School Equity in Vermont. this project was funded by the Vermont Agency of Education and this was actually the second time we got to work together as a team on a con a contract from the agency education, looking at implementing restorative approaches in school settings. so how would you describe the Rise b BT project as an elevator pitch? I don’t know if one of you wants to go first, but like, in a nutshell, how would you describe what we did together on this project? Lindsey Halman: Well, I can, can I do, I’ll try my elevator pitch and then I wanna back up a little bit. Is that okay? Sure. So okay. In my elevator pitch, the goal of this project was to work with schools or school districts that had already that was that, that were already on their journey to implement restorative approaches in schools or to deepen their learning around restorative approaches in schools. So in this particular Rise VT project, we looked at four different sites around the state, geographically diverse. we had an elementary school, we had a K-12, we had a middle high school, and we had a large system and pre-K 12 Burlington School District. And the goal was to take each site where they are partner them with a coach from the restorative approaches collaborative that I’ll get to in a moment. And then and support them, kind of not taking them back, but kind of assessing where they are, what have we done so far, where are we at, what are our goals? And helping to support them in moving this work forward while also ensuring that young people are engaged in that work as well with their adult partners. there was also, as part of this project we recognize that we were only working very closely with four sites, and that there’s a lot of, there’s a lot of different levels of understanding around restorative approaches in Vermont. So from that understanding, we recognize the importance of creating a learning module, which is really an incredible body of work that takes schools that are maybe newer to the journey on their own learning experience to understand kind of what are restorative approaches in schools and what do we need in order to get our structures and systems in place to support this. And simultaneously we worked with a f filmmaker to create stories of Vermont schools that are doing this work. Yeah, Amy Wheeler: I think you covered it all. I, I just wanted to point out the kind of reason we selected sites that were already on their journey was recognizing the kind of limited capacity that schools and districts have right now still due to the ongoing impacts of covid and wanting to select sites that were kind of well positioned for success this year, knowing that as we, you know, continue to move on past covid more and more schools and districts will kind of be ready for this work. and so we positioned those modules to be available as schools are, you know, starting to explore and, and look at their own implementation and the prospects in their school to be able to utilize those resources that kind of live beyond the, the timeframe of this grant. and then we also formed a community of practice with the fore sites so that they could come together throughout the year to learn from one another and you know, talk about any challenges and also develop some, you know, shared understanding through, through content delivery of some, you know, maybe new practices they weren’t aware of or new tools to help them grow in their work. Valerie Wood: Great. Yeah, thank you for adding that. So, just to summarize it, the Rise BT project, we had the four different sites that we’re working with. They had teams that we were working with to engage in this work. We connected them. Many of them already had coaches that they were connected to, to your point, if they didn’t, we connected them to a coach. They were part of a community of practice where we pulled them together to learn from each other. There was the videography and documentation work that was happening that helped them have a story of their school and their journey that can be part of a showcase of this work in Vermont for their own learning, also for the larger community viewing. And we have the modules. So that’s, those are the different components of the project. And so in, you know, now that you’ve had some time to reflect on the work together, what did we learn? What would you wanna highlight for those that are viewing or listening in terms of what we learned from the project together? Amy Wheeler: You can go first. Valerie Wood: Go ahead, Amy. Amy Wheeler: I think the community of practice element was probably the most difficult this time. and I think a, a piece of that was related to having those communities of practice be held virtually. and amidst of time in school where there are a lot of staff shortages you know, shortage of substitutes to be able to cover for staff to be able to attend certain professional learning events and just kind of limited bandwidth to be able to be thinking about this work. And I think there’s a, a like a yearning to connect with other schools who are doing this work, and also that kind of may be put on the back burner when other needs are arising as more pressing. so I think that was a learning for us and something we would, you know, keep in mind moving forward that, you know, in-person connection is really important and staff are pulled in a lot of different directions right now that make both in-person and virtual professional learning challenging which I think cause the schools to really rely on their coach and those coaching supports. So I’m, I’m glad that we kind of foresaw that and kind of amplified the importance of coaching, and put some more resources toward coaching than we did the last time. so that schools did have the time to engage more deeply with the coach and to be able to utilize that coach, however, made sense for their school. so some of the coaches led in-service training, and some of the coaches facilitated circles with students. and so they were able to kind of design how they were gonna use that coach most effectively. And then I think the other learning like Lindsey mentioned is really just that value of the restorative approaches collaborative. So we really leaned on different members to be able to provide different knowledge and skills and support throughout this project. And I think it’s a group that people really value and that will continue beyond this project and thinking about, you know, what structures are in place to be able to support that group to continue essentially as a, as a volunteer organization, as a, as existing right now. Lindsey Halman: Yeah, I would add I would agree with everything. I think, you know, learning as well recognizing that people had kind of limited bandwidth going into this project. we really relied in many ways on teams that already had strong youth-adult teams at their site. So Waka Elementary was one, they already had built a culture around youth-adult partnership Proctor Junior, senior high school and Proctor, and then Burlington School District and Twin Burlington School District being the very large district Proctor, like I said, small Rutland County middle high school, and then Twinfield, which is a pre-K 12. they, all the sites already had some level of understanding of what it means to partner with young people in this work. And we’re very open to that. And many of the schools, three, you know, men, many of the sites also had strong youth-adult teams already that were engaged in work. So they were it just really enhanced the work that they were doing and also allowed them to move to action quicker. And, you know, I think that pairing of Community Justice Center staff with other members of the restorative approaches collaborative was a very powerful model. And what we’ve noticed as a success is that in many of the sites, those relationships continue beyond the funding from the AOE. So now the schools continue to do work, they’re finding creative ways to seek resources to continue that work with their youth-adult teams because they’re recognizing the power of having young people engage in the thinking about planning and implementation of restorative approaches. Valerie Wood: Thank you for sharing Lindsey and Amy, I’ll just add a reflection that one of the learnings I took away is we really mean it when we say to do this work, well you need to ask people to slow down and focus on the relationship building. And I think about you know, the various different relationships that we’re forming. So some people were forming relatively new relationships with their coaches. Some teams were at different places with their youth-adult partnership. And so were the, if youth adult partnership hadn’t already been established at a site, what was kind of the work that needed to be done with the adults and the youth separately before bringing them together kind of level, setting expectations, and then you know, just the process for the different sites to connect with one another. And, you know, to what you, the point you shared Amy, was the timing of it, while of it all was that schools and the people that were participating it felt like they were more stressed than they ever had been. And so at the same time that we’re saying, please, like, slow down to focus on this work and focus on the relationship building they’re getting a lot of pressures to multitask to literally try to like be present in a meeting, but also attending to a student crisis and kind of coming in and out of conversations. And so you, there’s no real solution to that. But one of the things we did put in the final report was for school professionals and really their administrators to think about if you have a team that’s eager to engage in this work, and again, I think it does go to that like systems approach what are the supports that can be put in place to really release that team from their day-to-day duties to be present in the activities of the project? Because that’s how, when they can fully attend to the, you know, the activity whether it’s, we frame it as a learning activity or just like a relationship activity, which is still a form of learning that split attention is so hard for anyone to manage. And so that’s how they bring it back to their site. Lindsey Halman: Yeah, I think that’s like, I just wanna like put an exclamation point on this, that idea of time. I always think of like the comparison of like, there, there’s like the slow foods movement where people, I don’t know if it’s still a movement. I’m sure it is, but there is a lot of attention on like, what are we putting in our body? our bodies are what get us up and moving every day. It’s what gets us, you engaged in life and like, what are we putting in to help nourish those bodies? And so if we think about like, the body as a container, well the school is the container, what are we putting into those schools to really nourish and support engaging and joyful learning environments? And so it’s the relationships, it’s not the math curriculum, it’s not the, you know, the, the really cool science lab. It’s, it’s the relationships. It’s like we need to nourish the relationships. We need to slow down and think about the relationship building those, taking time to really tend to the relationship, getting to know young people and getting to know each other as adults, colleagues too, in order to have a healthier system. So like the body system, you focus on the food going in, slowing down in the, in the school system, you focus on the relationships, slowing that down so that you can put more time into relationships. Valerie Wood: I love that comparison, Lindsey. Thank you. And I think it leads nicely into our next question, which is, what was the most surprising thing you learned from this project? And it could be a personal reflection or it could be, you know, something related to the outcomes we looked at. So it’s, it’s meant to be a broad question. What’s the most surprising thing you learned? Amy Wheeler: I don’t know if it’s the most surprising, but something that was kind of an aha moment for me was recognizing that the videography component, the documentation didn’t need to just showcase, you know, exemplars or like when this is really well implemented and kind of what schools are striving for, but that it actually would be more powerful to kind of embrace the, the difficulties and the challenges that schools come across. You know, what have they done to overcome them? What challenges are they still experiencing? and give that kind of full picture rather than kind of presenting a rosy image of, you know, a perfect implementation which doesn’t exist. And I think that our videographer Ned was really able to get at that and to be able to kind of show both some, some really great successes and also where the kind of pain points are. so that was really helpful for me to kind of reframe, you know, videos don’t need to just be, you know, kind of this clean, polished version of, of what things could look like in schools. Valerie Wood: So I was wondering what do you both see as some of the wider implications of this work together? What do you see as the, some of the real-world impacts? Lindsey Halman: I’m hopeful that out of this particular project, that more schools will now have access to these really rich resources, the module, the videos, the report, the directory of practitioners. And so once you can start to see stories and hear stories and you think, okay, yeah, this, I too can do this, or we can do this together as a community. So I’m hoping it’s, you know in many ways like a movement building and that schools are really taking some time to think through. it’s been the, you know, the past couple of years have been incredibly challenging for schools and school systems and how can we continue to support schools in taking that time to focus on relationships and each other and community. Cuz that’s, that’s the only thing that’s gonna build our health as a system, right? And so I’m hopeful that that, you know, kind of like this will like light a spark for others and that they can learn from schools that are right down the road from them or in other parts of the state. And that will have more and more schools engaging in this level of work. There are a lot of other schools that are already on their restorative journey and so I, it’d be great to just continue to network schools together to continue that like idea of a community of practice so they can learn from one another. Amy and I both served on the Act 35 task force, which was tasked with creating a report with recommendations for ways in which to go about reducing and or eliminating exclusionary discipline in schools. And a couple other things too that said, there was a list of recommendations that were created by a very strong group of young, of, of people professionals and young people from across the state that we hope that people will actually look at and think about how do we change our own policies. I’m not, you know, even if it’s not state-level policy change, but local policy change and that we are seeing systems, one of our schools districts our sites, Burlington School District, they use the Act 35 report of recommendations to create a restorative code of conduct. And I think that’s a model for other schools to look at. So learning from one another, okay, what is our restorative code of conduct? What would it look like to really reimagine what our code of conduct could be from a restorative place? So I’m hoping that more and more policy change will occur and we’ll see more and more restorative codes of conduct and restorative policies in place so that so it’s not just, you know, practices that are happening in pockets in schools, but that it’s really a systems level approach. Valerie Wood: Great. Thank you, Lindsey. Amy, any reflections you wanna share? Amy Wheeler: Yeah, I think it’s gonna be important forward, you know, thinking about how we can help schools think about this in a streamlined approach, like Lindsey was saying, like, you’re not adding on restorative approaches or you’re not doing this instead of doing something else. and in something that keeps coming to mind is the workaround community schools in Vermont and thinking about how we can help amplify that work and think about embedding restorative approaches and practices into the work that those schools that are working on community schools work right now. how they can think that through and then be models for other schools in the state to be moving toward that community schools approach. and so that’s kind of keeps coming to mind about how we can increase our involvement there. Lindsey Halman: Yeah, because one of the pillars that is also unique to Vermont of the community schools model is safe, inclusive, and equitable learning environments. And this is really fundamental to that work. So again, it’s not about like this piece here and this piece there, it’s about looking at it as an integrated systems approach. And I agree with Amy that I think that’s an area that we can really leverage around community schools and the model to create schools that really support all aspects of their community. Valerie Wood: Thank you both for sharing. And when I think about the real-world implication implications I agree with you both that the need for this kind of work and this kind of approach, it’s only gonna grow. And I’ll share a story that was told to me by a friend of mine who works in the school system. So she’s a kindergarten teacher and she talked about the fact that she has kindergartners entering her class now that were at the beginning of the pandemic. They had all, they had no kind of pre-K education because everything was shut down, right? We had the temporary closing and then we had the more permanent year of learning from home, I guess is the term I wanna use. and so she has students that didn’t have the opportunity to practice those social skills and behavioral regulation skills that they normally would’ve gotten in a pre-K or early childhood education setting. And she is just wondering like, how does she go about helping to meet the needs of so many students that have kind of escalated needs in terms of learning those skills? And so, you know, if I think about the traditional school model with a punitive disciplinary approach, right? You know, that looks like giving kids time out or sending them to go, I don’t know what they do nowadays, <laugh>, because if my kids haven’t been in kindergarten for a long time, but that kind of exclusionary discipline where they’re somehow being removed from the classroom until they’re kind of like calm again and being regulated again. And we just know, we just know that’s not gonna work and that’s going to be detrimental for so many kids. And so more than ever, I think we need to get the word out about what restorative approaches are. I do some myth busting as I think you both touched on earlier in the interview it’s not a kind of soft approach, if anything, everybody has to work a little bit harder, but in a positive way that has real implications for relationships and wanting to continue to be in school, wanting to continue to participate in your own education, wanting to continue to be an educator, right? How many educators have left because they’ve gotten burnout, right? But if they could focus on a positive relationship with their students, then you know, that becomes so much more gratifying than the tra what the traditional approach has to offer. Lindsey Halman: I was just gonna say one thing, and it goes back to what I said earlier about the developmental stage and brain development, is that I think it’s easy sometimes as adults to maybe forget that our, you know, the social-emotional development, you know, that our young people have missed over the past two years is extraordinary. It’s like, you know, multiply it by 10, you know, that’s how much development, you know, they missed. And so again, going back to slowing down and go and, and perhaps really then thinking about, okay, if this was what was missed, we need to teach these skills. These are skills that need to be taught. We don’t just learn how to sit in a circle together and, and pass something around or, or not talk out to, you know, when someone else is talking and to listen deeply to one another. These are skills that we must practice. They’re lifelong skills. They’re probably the most important valuable skills that if we take time right now to really think about how do we work together, how do we collaborate, how do we build a community that holds each other accountable? And that’s that hard work too. It’s like peer-to-peer accountability. I think that, you know, we, that’s gonna pay off so much more down the road if we can just kind of take a step back and say like, what is missing right now? You know, what have our young people missed in their development, in their development just because of the nature of our, of our, of our world right now? And let’s take some time to really learn and practice those skills so that they can be successful human beings. Valerie Wood: Yes. I exclamation point on that too, Lindsey. and so if we do a little visioning towards that future that we wanna imagine together, thinking big, what are your hopes and dreams for restorative approaches in our state? Amy Wheeler: I mean, broadly, I would hope that all schools and districts are moving towards transforming their learning environments to be taking a restorative approach and to be really keeping relationships at the center and understanding what that truly means. and I think, I think what’s going to get us there is a really sustained focus on this work. I think what we’ve struggled with the past few years is kind of, you know fits and spurts, is that the <laugh> phrase? That’s okay. Where we’ve had some momentum and some resources to be able to devote to this work and then some lulls. and I think in order for schools to really make growth and to be able to sustain their focus on it, I do think there needs to be a statewide focus on this work with sustainable funding sources so that this work can continue. And I think what we know about implementation science is that these kind of one-year one-off projects while useful are not gonna lead to the type of outcomes that we’re looking for for our schools. and so thinking about how can we take a statewide approach to this so that all of our students can, can benefit from this transformation. Lindsey Halman: Yeah, I would, I would just say ditto to that. And I hope and dream would be that like every school is using a restorative approach in, in their schools and is on the journey and some, some aspect you know, in the coming in the next year, 2, 3, 4, 5. But just like Amy said, it’s long. This is long-term work in order to have sustainable systems in place and to change a system that has been operating in a particular way for a hundred-plus years, right? And so to reimagine or transform a system, it takes time. So there needs to be resources in place and time for school communities to really dig into this work. And so that would be my hope too. Amy Wheeler: I always say like, you don’t want your child or your nephew or whoever to have to be lucky to get like the teacher who has these skills, right? Or the school who is taking this approach. all students in Vermont should, should have equitable access to schools that are safe and inclusive, and equitable. Valerie Wood: Great. Well, are there any closing thoughts? Lindsey Halman: Thank you, Valerie, for letting us have this space. Valerie Wood: Yes. Thank you for being here today, Lindsey. Amy, any closing thoughts? Amy Wheeler: I don’t think so. It’s just been kind of nice to reflect on the whole process and see where we might be headed. Valerie Wood: Great. All right. Well, thank you for your time today into our listening audience. We’ll see you next time. All right. Thank you everyone.  

https://youtu.be/nhtCfZ121OM In this episode, we are lucky enough to have author and disability rights advocate Hannah Setzer join us! Setzer runs the hugely popular instagram account @feedingtubefitness, and just released a new book: “I’ll Pray for You (And Other Outrageous Things Said to Disabled People)”. She joins the director of the Vermont Continence Project, Chayah Lichtig, as they discuss disability, pre-conceptions, instagram as both a community for people with disabilities and a public arena, and of course, the outrageous things said to disabled people. A full transcript appears below. Chayah: So I would like to start with an introduction, and it’s just and I don’t know you at all, we’re meeting for the first time, but I’m introducing you based on, having read your book, followed you online, and also read a bit about you from different content on the internet. So when I get to the end, I would love if you fill me in if anything is wrong or if anything is — if I left anything out, and I’m sure I’m going to. Hannah: Sounds good. Chayah: So Hannah Setzer is a self-described joyful rebel. Some of the many hats she wears are homesteader, business owner, foster, and adoptive parent, community activist and organizer, social worker, and disability rights advocate with the Disability Law Center of Virginia. Hannah is a fierce athlete and at this point is probably best known for her Instagram page, Feeding Tube Fitness, where she shares serious and funny fitness and health content, inspiration, thoughts, and the occasional dead-on rant. She regularly encourages her online following to move in whatever way makes them feel good and offers physically and financially accessible ideas for fitness and movement. Hannah is the author of the funny, touching, and thoughtful book “I’ll Pray for You: And Other Outrageous Things Said to Disabled People.” Hannah: Spot on. Spot on. That was great. You should just like follow me around and introduce me to people. Cause that was better than I could do. Chayah: *laughs* I could send it to you. And you know what, the farther I read into your book, the more impressed I was with all the extraordinary things that you do with your life and all the things that you’re passionate about. Just so you know a little bit about me, because you know, before this moment you probably only knew me if you’ve looked me up on our organization’s website. So, I am an occupational therapist and I work for a project at a center at the University of Vermont. Our center is called the Center on Disability and Community Inclusion. And a lot of our work is centered on this idea of access and participation regardless of skill, regardless of disability, and so I’m sure you can see why your message and your work online really spoke to me. When you put out the call that you were looking for some places to publicize that you had written this great book, I really jumped at the opportunity. My two areas where I do the most of my work are like, early childhood practice, birth to three (or birth to five), and then also continence. So continence care is a big part of my work. So that’s me; that’s what I do. And so a lot of my questions are obviously kind of grounded in that. And you know, at any point during this interview, if you feel like what I’m saying or how I am kind of framing you or your work doesn’t feel authentic, totally feel free to let me know that. Totally feel free to help us realign. I do have a bunch of questions, but we’ll see where our conversation goes. So the first question that I wanted to ask you is actually about the title of your book and the concept behind your book. The title of your book includes the words, “other outrageous things that people say to disabled people.” And you know, we’ve heard a lot of them in my line of work, and I don’t know, this might be like a sour jumping-off point, but I’m wondering if you could share a couple more of the ones that just like really have either rubbed you the wrong way or kind of like shocked you for how totally not insightful they were. *laughs* Hannah: So it’s not always like things that people just say, sometimes it’s actions. And literally I can tell you an example that happened an hour ago, and I was like: good timing. My husband and I stopped so he could get lunch at a food truck and when he stopped and he placed his order and the woman told him the total and I had cash, so I pulled out cash to hand to her and she said, “Oh, the food is for her, not for you?” And he was like, “No?” She was like,  “No,” like, “you don’t have to pay. You don’t have to pay.” And he was like, “Here. Here’s the $14.50”, or whatever. And she was like, “No, it’s for her, it’s not for you. She doesn’t have to pay.” And my husband was like, “…what is happening?” And I was like, she like, feels sorry for me, because I’m disabled and she’s not charging me for food because she thinks I can’t order my food by myself and then you had to order. And he was like: “No way.” And I was like: “Yes dude. Like, that is what’s happening.” So we left a tip, and we took the free food. Like, if that’s the choice that you want to make, and an assumption that you want to make, who am I to stop you? Like, hey man, I’ll take the food. That just happened today. But my husband and I own a business. We sell physical handmade products and one time I was at the farmers market selling them. Just down there selling them behind that table, and a guy came up to me and said, “Who told you you had to do this?” And I said: “What?” He was like: “Is somebody paying you to be here?” And I was like: “…no?” He was like: “Well that’s not right. Somebody should be paying you.” And I was like: “What are you talking about, dude? I’m just at a market. Like, other people are selling stuff too.” Then he handed me $20 and was like: “It’s not right that you have to work for somebody else and not get paid. I hate having people exploit disabled people.” And I was like: “Okay…”  I think he thought I was l somebody’s puppet, sitting at this table while they were out doing something. So I took his $20 and I was like, “Thanks dude!” Chayah: *laughs* Hannah: I was like, I own this business. Like, I’m the business owner, and this is my product I’m selling. And I think he just could not imagine the possibility that a disabled person person would own a business. Like be out selling stuff, without being forced to by some other person. Chayah: Right. Hannah: Yeah people, I mean are just like wild. Like and I had the lemon light on like the woman today. Like I have tattoos. Like, I don’t know. My face looks how it looks. I’m the one that had the money. I pulled out the money [at the food truck] today and the lady was still like,  “Oh, the food’s for her? It’s free.” And I was like: that’s on you. Chayah: It’s so interesting. I’m sure that you’ve heard this term of “visible disabilities” versus “invisible disabilities”, and how many people with invisible disabilities are treated incredibly poorly in society, because people may not realize that they need certain accommodations, right? And in some ways I hear from you that you have the opposite thing going on in your life. Where people see that you have this disability, that you have this facial difference, they see your trach — or whatever it is — and they make all kinds of assumptions about you. Which on the one hand right, even if you did require certain accommodations, they’re not doing it in a way that’s respectful or personal to you. That’s just demeaning you as a person, right? Hannah: Yeah. Chayah: It’s just so interesting. So many of the stories that you told in your book, it was so clear to me the resilience that you have developed. And resilience doesn’t just mean being super tough, right? Sometimes it means being super vulnerable. Just to say like, “This sucks, and I don’t owe you an explanation.” Hannah: Yeah. Chayah: I was thinking near the beginning of your book you wrote about all the people who tell you they’re gonna pray for you, and how often you hear that. And I was reading this other book last summer that I absolutely loved. The name of the book was “Maybe You Should Talk to Someone” — I don’t know if you’ve heard of it? Hannah: I haven’t. Chayah: But it’s a great book and it’s written by a therapist. And she talks about how she was getting sick. And how so much of the phobia about getting sick is that it puts you in touch with your own mortality. It puts you in touch with this idea that anything could happen to anyone at any time, right? Like, I could get in a car crash this afternoon that would change the course of my life. I could have a baby who had  a significant disability or some other need — I’m trying to wrap my head around what I’m trying to say. It’s like that people will tell you that they’re gonna pray for you as if number one,  you’re not praying hard enough for yoursel and that’s why you’re like this, and also that you don’t care enough. Or that this is the thing that you need to care about and the thing that you need to be healed from. I’m just wondering if you could speak to that at all. Hannah: Yeah, I think it’s just a big assumption that people have when they assume somebody who is different: to assume that different is negative or different means they have to be fixed so that they look the same as everyone else does. So in the book I talk about a woman who came up to me at a church that I was visiting, and didn’t introduce herself — I didn’t know anyone in the church, this is my first time visiting this church — and she came up and put her hands on my head and started praying for me and speaking in tongues. I was so uncomfortable, and took her hands off me and walked away. Yeah, it’s just crazy the audacity that people have to assume that they know what I need in my life or what should happen in my life without even knowing my name. They know nothing about me. And it’s just very bold and brazen of people to make those assumptions. To think literally just based on how my face looks, that they should know the trajectory of my life without knowing anything about me. Chayah: Yeah. Hannah: Or… like you said, like that I don’t care or that I’m not doing enough to be fixed and be healed when they don’t know my medical history. They don’t know that I’ve had sixty surgeries in my life. I’m 32 and like, a lot of things have been tried. *laughs* Chayah: Yeah. Hannah: I think this is the best it is going to get, and that is okay. Chayah: Totally. And also that like if you’re healthy and you like your life, right? And healthy is defined by the person who’s living that life and in that body and, you like who you are. It’s really up to you how you choose what you do or do not choose to pursue. I think that it is just so interesting how many people really equate appearance with whether or not you’ve done the right things and made the right choices. Hannah: Yeah. And certainly that goes beyond disability. That goes into like weight and fitness and just runs the gamut as people — as society — still think that thin is the way to be and that is superior and that’s the goal you should be striving for. There’s many billions of people on earth and nobody looks the same and it’s beautiful that we’re all so different. I don’t know why it’s so hard to celebrate that cause it certainly shouldn’t be, but I dunno. Chayah: Yeah, yeah. I wanted to talk to you about the chapter where you talk about being not being an inspiration? And now I’m gonna have my Terry Gross moment and I’m going to actually — if you don’t mind — read it because I just love what you wrote and I’m gonna read for a moment. You said: I’m not inspirational. If I had a dollar for every time I was told I was inspirational, I would be sending all my friends to space in our own rockets because I’d be so rich. The world loves to label people with disabilities and medical conditions as inspirational. Living my life with surgeries and medical devices does not make me inspirational. Simply existing as a person in a world in society that doesn’t understand me and doesn’t accept me isn’t inspirational, I think we’ve twisted the meaning of ‘inspirational’. It’s become something that drips of pity and sadness and sometimes relief that our lives aren’t as sad as others. ‘Look at that person, they’re so inspirational.’ But if you actually look at their lives, chances are they aren’t doing anything inspirational. Chayah: And then you go on to talk about your own life, and also, you know, friends of yours who have disabilities who are called inspirational just for existing. I’m assuming you’ve heard the term ‘inspiration porn’, right?  I work with kids who are often born with or very early on, there’s something identified as either a medical crisis or a pretty clear indicator that developmentally this child’s gonna need a lot more care and support. Their families are often sort of processing and even grieving the fact that their life with their child and that their child’s life isn’t gonna be what they expected. And a lot of times our work and our team’s work is to like remind families and their local providers — because we’re consultants — that this is a real whole person right in front of you. Regardless of what they are capable of, how they’re capable of communicating with you. And I think the flip side of this coin is to like feel inspired like you were saying, by the very existence of people with disabilities, you know, buying toilet paper, getting on a bus. And so the question for you is: what would you like folks to know about your experience of being told that you’re an inspiration while doing everyday things? Hannah: I mean it’s just ridiculous. Like I said in the book, I think people often use it in earnest and kind ways. But I think it always tinged with a bit of like, “Ooh, I’m glad that’s not me. That has to be so hard.” To be very honest I catch myself sometimes saying that too. Like if I’m watching a video on Instagram and a disabled athlete or someone doing something really impressive I often am like, “Dang. She’s inspirational.” Then I have to sit there and think: why do I think that? Is it because she is doing this crazy athletic thing that I can’t do and that is inspiring me to strive harder to be able to do that particular exercise and particular movement? So I think you just have to think why you are saying things and I have to do that too, certainly. I said in the book like, my friend is in a wheelchair, and she gets told at the grocery store: you’re so inspirational! And she’s like: “I’m literally just shopping for toothpaste. There’s nothing inspirational about this.” I don’t mind being inspirational if it inspires you to do something? Like if there’s an action or a change in thought behind it? Like: If I inspired you to change your opinion about disabled people? Like: cool! I’m happy to inspire you to do that. If I inspire you to go outside on a walk to end the day: I’m happy about that too. If I inspire you to sign up to be a foster parent in your town: amazing. Kids need homes need homes so: great job. But if I’m simply… being told “you’re so inspirational” and there’s no like, “because” behind it, like “I want to be inspirational because XYZ” and that reason cannot be simply existing. It has to be because of something I’m doing. And in turn that has to make you want to hopefully take action behind changing something in your own life too. Chayah: Yeah, yeah. I wonder like if I troll my own thoughts, I find you to be incredibly inspirational. And I find you to be incredibly inspirational the farther I read into your book. Because I was like, she does that, too. She does this other thing, holy cow. From the beginning of your book, you make it so clear that you’re like, if I believe in something and I care about something, I’m gonna go get it done and I’m gonna be a part of it. And I find that so inspirational. And I wonder if like a lot of the message under people just labeling people as inspirational for existing is like: “Oh, it’s hard for you to exist. It takes more effort for you to be here, and you do extra things. Like wow.” You know? And I think, I think it might be like a statement about… how each of us sees ourselves as not capable. You know what I mean? Like, oh, well if my life were hard then, you know… How many parents with children with special needs that I work with are like: “I’m so tired of other parents telling me, ‘I couldn’t do what you do.’ It’s like, of course you would do what I do. It’s your kid, you take care of them. It doesn’t make me inspirational. It probably just makes me more tired. Like, I’m just out here trying to be me.” You know what I mean? Hannah: Yeah I hear that a lot in two other ways in my life. One as a foster parent, people would be like: “I can never do that. Like, you are so amazing” And I’m like: “…But I’m nothing special. I just know the overwhelming statistics and how many kids needed homes and like, I had a home. Like that literally that is like how easy the deciding factor was for my husband and I to start the process.” Are there kids in our town that need places to be like a safe place to remain? Yes? Okay, sign me up. I also see it all the time on Instagram when I post fitness-related things and people are like, “Oh my gosh. I’m not disabled and I can’t even do that.” I’m like: you probably could, you just don’t like to put in the effort. I am choosing to put in the effort. Maybe that’s inspirational, maybe it’s not. I don’t think every choice we make has to have inspiration attached to it. There’s literally this determination and hard work that people can choose to do. That’s it. I pay to join the gym. I budget time in my day to go to that gym — that’s a choice that I make not having anything to do with my disability, but just as person. You can make those choices in your day too. It doesn’t all have to tie back to disability. But I think when people are disabled, it always does come back to that because people want to attach whatever you’re doing to the fact that you have a disability. Chayah: Yeah. You know, that’s something I was wondering about as I was reading through your book and actually kind of aligns perfectly with my next question,which is about your Instagram presence, and your feeding tube fitness account. I got a big kick out of you saying that you started your account because you wanted free leggings. Hannah: Yeah totally. Chayah: Totally right. I get that, for sure. And you also talk later in the book about your dawning awareness over time of — and this is a quote — how inaccessible fitness is in the disability community. And I’m wondering: did the fact of having a visible disability impact your decision to build a social media platform in any way? Either for or against? Or was it really just a fact that it was there? Hannah: I totally think just the fact that it was there.I like had a New Year’s resolution in 2018 to move my body for 30 days straight. And then 30 days turned into 50,  into a hundred, and literally my real life friends were like, “We’re tired of you talking about this. Can you make like a fitness Instagram and like, talk to other people?” And so I did. No, it was no real intentions.  I just didn’t know that the fitness industry was so big. I had done several half marathons and played like in intramural sports in college that had never been in like the fitness world like I am now. I just didn’t know how big it was and how not-diversified it was. I have learned a lot from building this community that I never anticipated. Honestly it was four and a half years into my journey of movement, before I ever stepped foot inside a gym. I was just doing everything at home by myself. So I didn’t really know what it was like to move out in the community as disabled and at a gym. And in June of 2020 I got invited to go to the crossfit gym in my town and I was terrified cause I was like, “Huh. I have never done it like that.” And clearly like not one single moment that I had been in that gym — not every day but many times since June — not one single moment have I felt out of place. Not wanted, not accepted — really from the minute I walked in the door, that community has been so kind and so open and really so inclusive. Like, some days, my feeding tube will just not be happy, and I go and it’s like, “Coach, I can’t do half the things today.” And they’ll be like: “Alright, let’s do this, this, and this [instead].” Without batting an eye. Without feeling annoyed. Just: this is what Hannah’s doing today. No big deal. Right now there’s a worldwide Crossfit competition happening. It’s over three Friday’s, and I’m going this afternoon and one of the things that you have to do is put a barbell on your shoulders, which I don’t do because of my trach. I was just doing dumbbells instead. And it’s like: okay, noted. Nobody cares. I’m in there working hard, everyone else is working hard and I feel so supported, which honestly I did not know that you can feel in the gym just cause I had never been a part of one. So I’m grateful to have the gym I have and just to know that there are spaces in the fitness world where people are celebrated and accepted, and not assigned things that make them feel inadequate and less than. Like, no. We’re going to celebrate you and what you can do. If this is what you can do, awesome. Let’s do it. Chayah: Yeah, there’s so many things about what you said that are really like lovely and really encouraging to hear, I think especially for people who are, you know, feeling a little more hesitant about like, getting into being part of like a fitness community. And I also just wanna say that one of the first things that you said was basically that you kind of forged this on your own for years and that in and of itself is the part I find the most impressive. Because if I’m not following a class I’m gonna go sit down. *laughs* That’s my vibe these days. I was thinking one of the things that I really love about your Instagram account, one of the things I come back to again and again is that, you know, you regularly celebrate your wins. Like, you know, a taller box jump, or a heavier weight for a certain exercise. And then also I love that you guys do these like really funny and enjoyable stunts either with your husband Brandon or your gym friends. Like they’re just so fun, like they just — most of them like end hysterically and I love that. I love that. And I love that you’re not like waiting until it’s perfect, you know? Yeah it’s just like what’s “perfect”? And I do wonder, and maybe if this is redundant, you can just like pass, but like is there a specific message that you want your online presence to show the world? Hannah: I think, and I talk about this in my book too: I do not think that I am like, the most fit person in the world. The strongest, the fastest, the most beautiful and the most like, well-spoken. I don’t think any of those things about myself, but I am willing to put myself out there in the world in hopes that society at large can see a disabled person doing all the insane things that I do. Because growing up I didn’t ever see representation of anyone that looked like me certainly. But there were not disabled people as a whole in the media, you know, like don’t need to be anything, magazines. So if I can go first, I’m happy to. Again: not because I think I’m the best and I should be out there as like the poster child of disabled anything but If I can be a gateway to another disabled person saying, “Oh my gosh, I can try this” or “I always wanted to pursue fashion and pursue modeling” or whatever, and they see the video that I had of me like walking on the runway — again not because I’m like A+ runway model — cause I’m not– but those things are things that other people train even if they’re not my things like I can do. I am happy to go first, I’m happy to be out in world, doing these things, having it on social media, even if I am failing. But you know, people on Instagram, if I post anything at the gym I always get comments of like, “you’re doing it wrong” and blah blah blah. Like, who gives a (beep)? I’m out here doing it and hopefully that gives somebody else the confidence and the encouragement to do the thing that they want to do too. Chayah: I think that’s super thoughtful and I feel like we’re just gliding like butter through these questions that I have here. Because my next question was about how you talk about how exhausting it can be to put yourself in the spotlight, and I hear you saying you know, that the people who you’re really wanting to touch are not all the people who want you to be an ambassador to the like, non-disabled world, but it’s really helping other people who have disabilities out there to see that there’s a community out there that they can feel connected to. Hannah: Yeah, I think it’s really important and really beautiful to have visibility and representation. and I use the example a lot of the new Little Mermaid movie that’s coming out that has a Black woman playing Ariel. There’s all these reaction videos of all these little Black girls seeing Ariel for the first time and being like, “Whoa! She’s like me!” And I get sad every time I see those videos. It’s just so important. And I just think about all the little disabled girls and boys who are just longing for the day that they can feel included and see themselves as a Disney princess. They’re ready, you know? Community is so important, and growing up I just didn’t have that. Honestly, it wasn’t until college that I had my first disabled friend. I grew up with my parents not using the term “disabled”.  They were just like, “Oh, Hannah has a medical condition.” A friend from college has cerebral palsy and she had parents saying: you have a disability; you’re disabled. We had a lot of come-to-Jesus talks. She was like: “Hannah, you’re disabled.” And I’d be like, “No, I’m not.” And she’d be like, “Yes, you literally are.” But because she was my best friend it’s okay that we had these conversations. That process, to me, of accepting this identity has truly just opened up this whole community that I didn’t know I was missing, and didn’t know that I needed until I found it. And it was so beautiful. I’m so appreciative that the story I told in the beginning about the lady at the food truck today, I posted that on Instagram and I instantly sent it to all of my disabled friends and I was like, tell me this hasn’t happened you because I know it has. There is something about feeling known and seen, and like laughing about these ridiculous things with other disabled people that is unmatched in the world. My husband is amazing and so kind and patient that he’s not disabled. So like today I had to tell him what was happening at the food truck. But then I texted my disabled friends, and they’re like, oh yeah. They got it right away, totally. They knew. Chayah: I mean that is really such a story of sort of social media and the media sphere being like, a force for good that you talk about all the people that you managed to connect with through that. I wanted to read one more thing that you wrote, and it’s after you talk about some experiences you had as a kid: you talked about going to the zoo and a child there singling you out and bullying you. Then you said, These days kids can get picked on by millions of people all across the world at the tap of a finger. We speak out against all these horrors, but we give life to more and more pathways to have access to people. There’s more representation now than ever, but it still comes at the cost of hurt people behind screens. A new kind of exhaustion sets in when you allow yourself to be public and thousands of people are entering your home and saying whatever they want to via a four-inch iPhone screen. Oh man. My heart just really  went out to you when I read that. And I was wondering if you’d be willing to speak from your experience now being very much in the spotlight and in a very public identity. What can communities of allies do to make virtual spaces safer and more supportive for people like you who are really putting yourselves out there? Hannah: Definitely listening to us when we speak, and respecting the words that we use. My best friend Ashley that I was just talking about, with cerebral palsy, she has a big account as well on Instagram and she’ll refer to herself as a disabled woman. I do the same on my account. And every time we get hundreds of comments saying like, “You’re not disabled!” like, “Don’t talk about yourself that way! You’re just different!” and you’re special or whatever and it’s like no, no: I can talk about myself how I want to talk about myself. Disabled is not a bad word. If I’m out here in the world calling myself a disabled woman then you need to listen to that and respect that, and use that terminology. I’m sorry if that makes you uncomfortable because society has not always used that term in a positive way. But we are the experts on ourselves, and that goes for everyone. You’re the expert on you; I’m not. So if you said this is what I want you to call me, this is how I want to be talked about. Okay! I respect that! It’s really just as simple as that. When disabled people are talking, listen and respect what they say and don’t try to tell us that you know differently or that you know them better than they do. I think that’s just a common courtesy that society in general is missing these days: respecting people and who they are and they let out in their lives. And definitely it applies to disabled people, but I would say society as a whole. Chayah: Thank you that’s really, really well said. It’s your point about like how the word disabled was really considered to be sort of a dirty word for such a long time. And for people, you know, for people with disabilities to reclaim that word and say like, no it’s not a bad word and it can describe me and that’s okay. I think, you know, I think it goes back to this idea that people are afraid, right, often afraid of like, “Oh my gosh, what if that were me? I wouldn’t want someone to call me disabled.” You know? Hannah: Yeah. I have friends in wheelchairs that refer to themselves as crippled. And I think a lot of disabled people are reclaiming this vocabulary and this terminology and like I said it might make you uncomfortable but I think it’s something that we just have to be okay with and accept and respect. I think that there’s the other like minorities too. It’s not just a thing that disabled people are reclaiming terminology. I think that is happening in a lot of different groups these days and like. I’ll talk to older generations and say disabled person and they’ll say, oh no you’re a person with a disability. And I’m like, no. It’s crazy. Disabled persons. One less word to say. It’s easy, it doesn’t have a bad connotation. And they’ll be like, “No, person-first language is better and has you as a person.” I’m like: Yeah. I’m a disabled person. It’s just like: I’m still a person either way, I’m just trying to save a word. Chayah: Yeah, yep, that’s absolutely spot on. I had a another question that was kind of about media representation of you and media representation of disability. And when I was preparing for this interview, I read your book and I also searched online to find, you know, information that maybe you hadn’t posted about, or kind of details about more things about you. And what I found really difficult was to find information about you and your work.  I don’t know if you have  sense of what I’m about to say, but every single headline — with no shade thrown to anybody — every single headline references your disability in a degree of detail that seems wholly unnecessary. Right? One headline was like, Woman Who Can’t Smile Becomes Disability Rights Advocate. Another one was, Woman Can’t Close Her Eyes or Shut her Mouth after Dr. Blunder. And it was like, if I’m reading correctly, that happened when you were an infant. But this is an article about your fitness and activism work as an adult. I was like, what would it be like for me? Like: Woman Who Got Stung By An Entire Beehive Gets A Job. I’m wondering like if you have thoughts about the representation of your disability and publicity of you or your work. Hannah: I would be honest: some of that is on me. Because I had no idea how to talk to the media. Within like six months of starting that Instagram account I just had no concept of like, hey, you shouldn’t say everything to a journalist because they will use everything you say. Probably against you. So I just didn’t know and I just didn’t understand about the headlines and about the articles like that. I am much more aware now and also like make people send me the headline ahead of time and send me the article ahead of time so I can say: no, this is not what we’re doing. That was just like a live and learn moment. Like, holy crap the media is crazy. I went viral from a FaceTime in the UK, I wasn’t even viral here in the US. And I guess in the UK they have a lot more like, Daily Mail and just like kind of trashier sites. Story after story after story. Tabloid press basically. So that was the first time I went viral. And then it was just like, I had no idea what I was getting into. Definitely had learned along the way how to say things much more diplomatically. But yeah, the media’s crazy. Period. Case closed, right. Chayah: Yeah. I mean you’re so right. I think part of it was like, you know, when I read your book and I saw all of the extraordinary work you’re doing, right. And your your tagline in your book, which says: “my disability is the least interesting thing about me.” It’s so interesting still how like just all this media representation focuses so much on your disability, you know, and I was just, I couldn’t even find anywhere that referenced that you’re a social worker for example. Or anything like that. It just really stood out to me. Anyway, I wanna ask about your accessible park, accessible playground project. You and your husband Brandon have been working on trying to create an accessible playground in your town. Can you share any more about what or who inspired that? Who was the inspiration — to use that dirty word again — and what are you hoping to bring to your community with that playground? Hannah: Yes. One thing about me is if I have an idea, I have to make it happen. Sometimes to my detriment. I was like talking with my husband Brandon last night and my husband was like, you know, the difference between you and other people is you dream big dreams, but you are willing to put the work in to make them happen. And not everyone’s like that. And like, yeah, but it’s also exhausting. But Brandon and I live in a small town, and at the time that we had this idea in 2020, 2021, there was no like, local coffee shop here. There’s just like McDonald’s and Dunkin’ Donuts and you know, coffee shops are places of community. You can go and work and meet people and hang out. And so we were like, oh wait, let’s start a coffee shop. Not that we know anything about starting a coffee shop but we had the idea and who knows. And some of my friends were like, oh it would be so nice if you had a accessible playground that the kids can play at when the moms and dads are hanging out having a coffee, and we said oh my gosh, like yeah! that’s Why didn’t we think about that? And then honestly, things like went crazy from there cause we’re like, our town also doesn’t have a laundromat. We should also start a laundromat! Again not that we know anything about having a laundromat. And then somewhere along the way a consignment shop got added on — we like essentially had this like vision of, I don’t know, like a strip mall I guess. I don’t know why. A whole town center. Really we’re like trying to take over our town. So we were talking to other people, looking at buildings, blah, blah, blah — just like insane. And they’re like, “…one day.” But Brandon was like, “Well what if we just focused on the playground?” And I said, oh yeah, that sounds like a good idea. So we were like, okay let’s build an accessible playground here in our town. Because the closest one to us is about an hour away. And on the other side of the city There’s a few others in Virginia, but not anywhere close to us really. So we filed the paperwork to become a nonprofit and the nonprofit is called Growing Inclusivity. We looked honestly for a year for a piece of property that we could do this on and we’d put offers in on property and got denied a lot of times. And then finally like had a funny happenstance meeting with the owner of a golf place and he was like, I have land, like put it here. And we were like, are we allowed? What are you saying? Like after a whole year where we were posting, looking at properties, getting denied, fundraising the money, and he was just like yeah lets do it. So we signed contracts and partnered with a local golf place, Independence Golf here in Powhatan [Virginia]. He was like, here you go, do whatever want. He just like totally helped the vision, and he cares about the community. I was like: this is amazing. I’m in. So yes I still have no idea how it’s going to happen, because it’s like a $2 million project, and we have like a hundred thousand dollars. So if you want to donate you can do so on our website. Chayah: Well I was gonna ask you yeah. How do people donate? I’m assuming you’re still fundraising, so how could people donate? Hannah: It’s just growinginclusivity.com and there’s a big thing that says donate.  I have no idea if it will happen, when it will happen. But my husband Brandon is like someone that’s more like reasonable and rational than I am. Like, I had an idea and I’m like okay like two hours later I’ll be like, why hasn’t this happened yet? Where is it? And Brandon will be like, hey there, this isn’t literally like a five to 10 minute project. And then it hasn’t happened in like five minutes. He calms me down because I  will work myself up. So now I’m like, it’ll happen someday somehow. We’ll see, it’ll be great when it does happen. Chayah: That is awesome. That’s sounds like a really wonderful project. It’s so cool that you found a landowner and business owner that was excited about kind of bringing you on board too that’s so cool. Well, we have been talking for quite a while and I wanna let you get on with your day. I know you have a CrossFit competition to get to. I have one more question for you that is really near and dear to the work that I do every day working with the, you know, teens and families of children. Usually, like I said, really young children with disabilities. Do you have any — I almost don’t like this question because I don’t assume you to be the messenger for all people or anything like that — but do you personally have any message from your experience for the children and parents that are living that experience of diagnoses and disabilities and difficult medical procedures and things like that? Any words of support or thought for them? Hannah: I think it’s hard cause I don’t have a family with a disability. I have four kids who are all over the place with ADHD, but they don’t have like medical conditions, which is that’s all I had known obviously is medical conditions and surgeries and things like that. And that was not to minimize anyone with ADHD. Like they are wild and it’s insanity round here all the time. But I think people that have kids these days are going with all kinds of conditions are so honestly lucky to be born in this time because there’s just so many chances to connect with other people via social media. I was born in 1990 and my parents didn’t have the internet, they couldn’t like google medical terms, they couldn’t google like, what happens after this surgery? It was really just my doctors and my parents hoping things went well, with their expertise and with what they had, you know. But they were all making the best decisions that they could at the time and I’m really grateful because I’m still here. And the other thing if my parents had had a community of people that like all over the world that they could learn from and share wisdom with and teach things to, like I just think that’s a game changer. So I know sometimes you can get too in the weeds on the internet. You have to be the person that has boundaries, and that’s on you. So yeah I just think there’s so many ways to learn things and to be connected. My son had a baby recently that had a very rare medical condition and she was able to get connected like with people within our own city. It’s like before the internet and before like technology she could have lived in the same city and not ever known that there were people in 20 miles away that she could talk to and relate to. And so I think that’s really special and really important because just like I talked about finding the disability community for myself, it was kind of just as important for my parents to find that as well. And on the flip side of that,  if you’re a parent of a disabled kid, find them places to be with other disabled kids, because I wasn’t able to. Not cause my parents didn’t want to, but that just didn’t happen. Like if it existed, they didn’t know about it. In a way, my parents were innocent; like they didn’t know. Once a year I saw other kids on the east coast that might kind of have been like me in a sense. It wasn’t like an all day everyday thing which is kind of why Brandon and I hope to build this playground as a place that disabled kids and non-disabled kids can be together and learn and play and just interact. Like I don’t want my kids to —  since I’m disabled — to not understand that a disabled person can use it besides me. So I just want people in general to have community and have like a sense of belonging in all circumstances, and not just like in their special needs classroom at school, and then they don’t have anything else all day every day. Chayah: Thank you. Once again I’ll just say that was really well put. Hannah, I just wanna thank you so very, very much for taking the time to meet with me. Taking the time to create the presence that you have online for, you know, for all of the people out there who benefit from your humor and your insight and your presence. Again, I’m just gonna hold your book up for everyone out there: “I’ll Pray For You and Other Outrageous Things Said to Disabled people”. We didn’t even talk about your amazing animals. That’s like a whole other, it’s like a whole other conversation that you represented in your book. I also grew up with a pig, a not mini pig. So we could talk about that.  I hope you have a really wonderful afternoon Thank you this has been so fun.   Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

https://youtu.be/WLKszz0dsao   “Neurodiversity and access is the next frontier of our DEI conversations.” –Mel Houser In this episode of the podcast, we welcome medical student Elizabeth “Biz” Barker, and Dr. Melissa Houser, who is also the executive director of the non-profit All Brains Belong VT. Dr. Houser also sits on the CDCI Community Advisory Council. Both physicians identify as having a disability, and Dr. Houser also has a family member with a disability. They’re here to talk about ableism in the medical system, and how it begins in medical school: how we expect learners to perform as they learn medicine has a huge impact on keeping ableism going in healthcare. A full transcript of the episode appears below. Biz: Would you like to start? Mel: Sure! I can do that. So I am Mel Hauser. I use she/they pronouns. I am an autistic family physician with a clinical focus on providing primary care to neurodivergent patients across the lifespan. I’m the executive director of All Brains Belong Vermont, which is a nonprofit organization in Montpelier that uses universal design principles to provide healthcare, neurodiversity related education and social connection opportunities for kids and adults. And I guess I’ll also mention that I am autistic, ADHD, dyspraxic, dyslexic, dyscalculic. And I did not learn any of these things about myself until I was 37 years old. So it’s been a journey of like rewriting the narrative of my life through that lens. And, and learn learning about, you know, the things, the things that make me, me the things that allow me to do my work in, you know, meaningful ways and the things that are like really, really hard. Biz: Yes. Thank you so much, Mel. I appreciate it. Did you want to give a self-description? Mel: Oh yeah. Thank you for supporting my working memory. I’m a white person with short brown hair and I’m wearing a light aqua shirt. And I have a gray pillow behind me, and I’m at the corner of a wall that is copper and aqua. Biz: Amazing. Thank you. So well, I’m Elizabeth Barker. I’m a fourth year medical student at the University of Vermont. I am dyslexic, which I was formally diagnosed with when I was in eighth grade, but had always known I was a bit different. Now I considered myself a “neurolurker”, discovering all the other ways that my brain does not fit the typical mold, but is still beautiful in its own ways. Other than that, I’m hoping to go into family medicine primary care. I’m applying into residency all over the nation, so still very much so in the process of becoming a doctor, but hopeful for my future. And I am a white female who uses, she/her pronouns. Forgot to mention that brownish, blondish hair, and a very orange room <laugh> wearing a white shirt. All right. Do we wanna jump into our first question? Mel: Yeah. So, you know, we were thinking about the medical education process and and, and, and how, you know, our experience even, you know, separated by, you know, over a decade really the, the, there are some things that are missing. Biz: Mm-Hmm. <Affirmative>. Yeah. So a bit of context. Mia, Mel first met when she was my advisor during my first year of medical school during a class called Professionalism, what was the C? Mel: Communication. Biz: Communication and Reflection, which was a really phenomenal medical school class that during our first year, second year, and part of our third year brought small groups of medical students together and kind of took time to reflect on the many other various aspects of the world in general that affect medicine. We looked at a lot of social determinants of health; lots of other popular news articles that kind of were intertwined with medicine and healthcare in general. And this was one of the places that me and Mel first had a presentation on divergent aspects of healthcare, which was really fascinating but definitely was one of the few parts of my medical school education that really touched on it. So as me and Mel went through our years of healthcare, Mel was brave enough to jump out and really start taking this on. And I was really lucky to be able to follow her and also learn healthcare from the kind of general typical model, but also other ways that it could be viewed. Other ways that it can be improved upon to support all people. Mel: Oh, that’s so beautifully said. I’ll also mention that I did my medical school training at UVM also and I really do think that I got excellent training in health equity, cultural competency, like, just like, like, like that lens that in a way that perhaps was, was a bit ahead of its time. Having that diversity, equity, and inclusion lens you know, has been a, a value of UVM for a really long time. And, and, and I would also say that neurodiversity and access are the next frontier of the DEI [diversity, equity, and inclusion] conversations. I think that that’s where I’d like to see, see things going because I think that there are you know, everyday life practices for, for, for, for patients experiences and for physicians experiences that, that relate to neurodiversity and access that are unrecognized. Biz: Absolutely. For sure. All right. What was our first question that we wanted to jump into? Mel: Yeah, so, so you know, the, the, when we think about like, gaps in medical education you know it’s, it’s tempting to say to say that, but like, where do we start? Biz: Yeah, for sure. Well, I think we should start with maybe recognizing all the really amazing parts that medical education does reach upon what you were saying. UVM does seem a bit, a bit before its time and does reach past the basic model of medicine to include a lot of other aspects of healthcare. But where it’s lacking is also very evident. I think that for me, one of the biggest things that really jumped out to me when being in the typical medical school education system was a lot of this mix of imposter syndrome and the realities of not knowing what we don’t know. There was a lot of emphasis on evidence-based medicine in our first couple years and throughout medicine, and I find this extremely important. But it also happened to teach us to, in medicine, kind of approach a lot of things with skepticism if there isn’t previously done data and science and evidence to back up practices so on, on top of imposter syndrome. And this idea of only being able to do what we have evidence-based medicine for can kind of sometimes paint medical providers into corners, is what I’ve seen. Mel: Yeah. And like, just to say say, say a little bit for, for folks who don’t or maybe are not familiar with that imposter syndrome term. So, you know, just like the, the, the phenomenon of somebody doubting their skills, talents, accomplishments or like a, like a, like a internalized feel, feel feeling of like you know, the fear of being exposed as like incompetent. Like, oh, they’re gonna find out that, like, I don’t really know what I’m doing. So I mean, this is certainly not unique to, to my experience. To your experience. And this is pretty common as you know, described to me by colleagues in all, in all kinds of professions. But, but very common in healthcare training is like the vibe of, you know you know, explicitly or, or implicitly being told, you know, “Fake it till you make it!” Like that I think drives imposter syndrome. It’s mm-hmm. <Affirmative> not healthy. It’s actually OK to not know something and to authentically show up and say, “I need help. I don’t understand this. I actually have no idea.” Like, that’s like normal. It’s like so profoundly normal. Biz: Absolutely. And a lot of the culture of medicine, is the imposter syndrome is almost taught to be embraced in a way to kind of, like you said, fake it till you make it. But I think that, like you said, it’s, it’s not healthy. It leads to people trying to compensate in ways that don’t benefit them and long term aren’t sustainable. And I think it also leads to a lot of people not being able to accept other aspects of other patients. So in medicine, on top of the imposter syndrome, I feel like we’re taught to be superhuman and to ignore all the things that we can’t do perfectly or ignore our health and try to be something greater than we are. Which I think that also leads to doctors not seeing patients in the full ways that they can. Mel: That’s a really good point. You know, I think that there’s so much of the hidden curriculum in medical education. So there’s, you know, from, from the physician lens of like, you know my, my duty, my calling is this, and, and, and there’s a part of that, but that it’s, it’s not a zero sum game. So, you know you, you, you, you, you are a human and you have needs, you have, you have access needs, the thing, you know, access needs being, you know, anything anybody needs to fully and meaningfully show up in life. And, and, you know, the, the, the culture of, you know, don’t, you know, never take a sick day and, you know you know, put the patient first and like, is that maybe an overgeneralized cultural concept? Like does put the patient first? Like, like, can you do that without ignoring your own access needs? Biz: Absolutely. Exactly. And then with that, you just start to not even consider it that there are access needs when we’re told to be one way and perfect and human, non-human, just all the time, then we don’t accept the ways that we are human and the way that lots of people are human, and we do have different access needs. And if doctors can show up as their authentic selves that need accommodations and that need different access needs, then our patients can show up themselves as well. Mel: Yeah. You know, I think that’s a really good point. When I think about some of the common practices in medical education, not just in mine, in yours, but you know, my mentors and my colleagues who train in all different kind of systems, it’s, it’s just, I think pretty common. Like, for example, the concept of pimping where you are put on the spot in front of asked direct questions I mean, my experience was that that was really stressful and uncomfortable and painful and interfered with my learning in those circumstances. Mm-Hmm. <affirmative> both like, you know, both as the direct recipient of this practice or of like watching my colleagues being humiliated and dissipating my future humiliation. Like all of that was just, you know, unnecessary for my learning experience. But I do remember the, you know, what I’ll call like a brain rule, you know, the assumptions, the cultural assumptions that you get kind of indoctrinated and brainwashed into as opposed to like, you know, true laws of physics like, or true world rule, like the brain rule of like, well, you know that’s, that helps brains learn. You know, brains learn under stress, brains under, under fire. Yeah. I mean, maybe, maybe some brains do. Mine doesn’t. Biz: Exactly. Mel: And, and in fact, we all have different grains and like some brains may benefit from that concept. Some brains do not. And if we really want to be providing environments that are inclusive of all brains, we may not wanna have default practices. Biz: Absolutely. When there’s only one way of doing something, it leads to othering, Mel: Which Right. Because if, if, if, if, if you are, you know, oh brains learn under fire and humiliation and my brain doesn’t, there must be something wrong with me. Air go fast tracked imposter syndrome. Biz: Exactly. And in the same way that we don’t believe there should be one way to access healthcare, because everybody has a different brain and needs a different way to access healthcare, I think we both agree that medical school needs multiple different ways to demonstrate the same medical knowledge and skillset that everybody possesses in just different ways. Mel: Absolutely. and so when there is, for example you know you, you, you must demonstrate your knowledge via an like an, an oral boards if you have the kind of brain that organizes information best visually but you, you didn’t have a choice. If you <laugh>, I remember as a medical student on rounds, again, these like, you know, high pressure verbal pre anyway you know, you shouldn’t need your notes on rounds because if you need your notes, that means you don’t know your patience. Mm-Hmm. <affirmative>, and I’m like, oh my God. Maybe may, maybe I’m not really cut out for this because turns out I have working memory differences mm-hmm. <Affirmative> where the visual support actually gets mima. That’s like what the point of a to-do list is, or keeping a calendar. It’s the same neurologic process, but it is like overly glorified to quote, not need the accommodation which is, you know an example of ableism Biz: Mm-Hmm. <Affirmative>. Exactly. Mel: Name the thing. Biz: Name the thing. Exactly. And the same kind of brain rule applies to the way that we think about ourselves, then turns into how we think about our patients. So if our brain rule is that we don’t, we don’t need a visual aid to get through our presentation, then we might have the brain rule that patients don’t need a visual aid to get through their patient visit. So if we can accept that we all have our own access needs and we all need our own supports, then it’s easier to accept that patients have their own access needs and need access to their own supports. And just creating that brain rule that accepts that we all have different needs. Mel: Right. Cause that’s a world rule. It’s actually a thing that we all have different brains that have different needs. Biz: Exactly. So by having negative brain rules in medical school and having negative brain rules about the way that we need to show up changes the way that we think our patients need to show up. Mel: Right. And I, I, you know, I i I, I do think that there was an acknowledgement of the hidden curriculum in medical education. Like, I remember even that being talked about as a trainee, and it is true. It’s just that there’s, there’s even more threads of the hidden curriculum that are unhelpful. You know, so for, for example you know, I, I, I, I remember you know as a, as a trainee, you know, my, my clinical supervisors make might make some comment like, oh the patient with the list as though there were something stigmatizing something negative about being, like, having the kind of brain that organizes your information in writing and brings with you a visual support or up that patient has a positive cell phone sign and implying that like, you know, they must not actually be in the amount of pain that they say they are because there is one correct way to look when you’re in pain, which is of course not a thing. Mm-Hmm. <affirmative>. But there’s like so much of that, those like just the, the attitudes, the attitudes of being judged and dismissed. And so like, you know, not only is this not helpful, but but it hurts patients. Biz: Yeah. Cuz patients can tell when they’re being dismissed and that doesn’t just lead to a negative patient interaction in that moment, but a further distress between patients and the medical system as a whole. Mel: Totally. I’m really glad you brought that up. You know, there is extensive literature that neurodivergent patients experience barriers to accessing healthcare. And, and, and, and in addition to environmental barriers, sensory processing, you know the, the, the defaults of, you know, that, you know, you gotta pick up a phone to make a p you know, make an appointment. You gotta fill out the 20 page packet to become a new patient. Like, besides that stuff, it, there’s actually literature that patients perceive that healthcare providers have unhelpful attitudes. They, that like patients feel it, you know, feel it when, when they’re being viewed through a, a, a, a, a deficit-based lens. Biz: Absolutely. And a lot of healthcare does that views a lot of healthcare through a deficit-based lens versus a social model based lens. Which Mel: Yeah. Can you say more about like the medical model of disability versus the social model of disability? Biz: Absolutely. So the medical model of disability kind of puts the deficit in the person as in the person is deficient. The social, social based model looks at the person with the disability as whole in themselves and not their environment is deficient to meet their needs. And I think that in medical school, we’re taught constantly about abnormalities from the baseline that is the study of medicine, but we seem to pathologize anything that’s not the typical, the norm, the, the middle of the bell curve. So when we approach things that the social-based model it doesn’t lead to the additional inter internal conflict, the internal shame that is put on people with a quote unquote disability, it puts the shame and the othering onto the person versus the need for accommodations and the need for our society to change to accept them as they are. Mel: That is so well said. You know, I think that when it comes to visible disabilities the concept of the social model is is, is is is quite clear. You know, if I am a wheelchair user and I approach a building that has a ramp, I am going to have less disability than if I approach a building that does not have a ramp. And when it comes to invisible disability though, like, I mean, I’m not a, I’m, I’m, I’m, I’m, I’m, I’m gonna acknowledge there are things about my disability that, that make things hard, make things really hard, and the amount of disability I’m gonna experience is going to be relative to how accessible my environment is. Biz: Absolutely. The same way that for me as a medical student, when we have to write out our notes, my typing in my writing is a bit slower because of my dyslexia, and it’s harder for me to process my thoughts and get them down onto paper when I’m typing in, in a kind of loud workroom. But being able to use dictation or text to speech softwares allow me to talk my notes out which allows me to do them much more efficiently. So in a way, it’s, it’s allowing me to do the same thing, but util needing less of my energy to change how I function so that I can get the same task done. Mel: Right. And so, you know, all brains have a finite capacity of, of, of, of bandwidth. And if you’re gonna spend all your bandwidth doing the thing in a way that doesn’t work for your brain, you’re not gonna have a whole lot of left in your bandwidth budget. And I think that, you know, universal design offering flexible, multimodal ways of engagement benefits everybody. So there are people you know, in your example of using speech to text assistive tech and other assistive technology, I, I, I think there are, there are people even who, you know, are, have typically developing brains who benefit from that shared just having like multiple choices. It’s not like this is the default and okay, you’ve disclosed the disability now, now you get the accommodation that you, you know, often unfortunately have to work, send like a whole bunch of your bandwidth budget to even active. Biz: Yeah, exactly. So for example, yeah, using the dragon in the hospital is much easier for me than using another form of accommodation like text to speech because it’s already set up for most everyone. So instead of it having to be set up individually, just for me, it being there for everyone is like the wheelchair ramp just being there for everyone. Mel: Right. And if you have the kind of brain for whom, like using Dragon is hard, like what happens, you can type, like there’s multiple choices. And when you think through like the stages of the workflow of like, you know, anytime there’s like the one choice and there’s, you know, like that, that’s not neuro inclusive Biz: Mm-Hmm. <Affirmative>. Exactly. Mel: So, you know, biz, we’ve, you know, we, we’ve, we’ve both seen patients who are dissatisfied with their healthcare experiences. And, and you know, as we connect that to some of some of the elements of the hidden curriculum that’s part of healthcare system culture you know, do you think there, there’s there’s anything about the medical education process that may be contributing to that? Biz: Definitely, yeah. That a, that brings me back to kind of what we were talking about earlier with imposter syndrome. The idea that you are superhuman and you know everything, even if you don’t feel like you know everything, the kind of the fake it till you make it idea that you’re never wrong idea. I think that this sets a lot of people up throughout medicine to kind of think they know everything, even though we are all constantly learning or getting really attached the idea of something they heard once. And then not knowing more and kind of sticking to that one thing they, they were taught previously, like a brain rule, a brain rule that they were taught and then was never challenged by anything else in education. I think this can lead to a lot of patients presenting with symptoms that don’t fit a typical illness script that we’re taught. And if we haven’t seen it before and doctors haven’t identified it in the literature it’s very easy for doctor to say something along the lines of, oh, that’s not a thing. Which as a patient and a provider I know, can be one of the most frustrating things to hear because it kind of gaslights patients and makes them feel that not they’re not being heard, they’re not being seen, and that what’s bothering them isn’t being addressed. And when we don’t feel like we have all the answers and we don’t feel like we’ve seen the science and evidence on it it kind of leads to doctors brushing over things because they feel sometimes that they need to have all the answers. Mel: Right. Because as trainees we’re told that a lot of times, either, you know, explicitly or implicitly fake it till you make it, is implying that you’re not allowed to say you don’t know mm-hmm. <Affirmative>, and, you know, like in, in, in, in, in full transparency, you know, my my experience is that when you tell a patient, I don’t know, let’s learn this together, they love it, you know, they, they appreciate it. Like be a real person. In, in, you know, as, as, as someone who, you know, I run, I, I I I, I run a healthcare organization that, you know, has a, you know, a different, like a totally different model. You know, it’s, it’s, it’s the, the people who come here are generally those whose needs were not met by the traditional healthcare system and what they like. So, so basically most times I see new patients, I am hearing stories of their experience of, you know, feeling like they weren’t listened to or they were, they were dismissed or, or, and, and, and, and the stories they tell, you know, like I can zoom out and say, you know, probably the, the, the, the healthcare provider didn’t maybe really say that in way, but doesn’t even matter because their experience, like the, what they took away, how they remember feeling in those encounters, that’s what matters. And that’s the stuff people are talking about. And so it’s like, it’s like what anything that’s gonna, you know, anything you’re gonna communicate thinking about what is, how is it potentially going to be received by that patient? Biz: Absolutely. Absolutely. Mel: So as we wrap up biz, like, do you, what do you, what do you think should be our, our take home points? Biz: Yeah, definitely. I think that a big thing medical school is so much information, <laugh> always, and all the time and always changing that maybe it’s not so much how and what we teach or not necessarily what we teach and what we learn about directly versus how we’re taught to approach problems and how we’re taught to approach the unknown. Especially things that we haven’t been taught or things that maybe necessarily go against what we were taught how to approach those questions in patients with openness and compassion and curiosity. Mel: I love that. So, you know, fake it till you make it is not good for health, physician health or patient health. Maybe we could summarize that. Biz: Absolutely. Mel: So say one, you know, acknowledge when you don’t know something. Exactly. and, and, and in order to learn about that thing, it may involve looking at other fields to help answer those questions. Biz: Mm-Hmm. <affirmative>. Yeah. Absolutely. Is there any other main Mel: Take? Yeah, I’d say like, my, my, my, my main second point is just like neurodiversity and access is the next frontier of the d e i conversations. And you know, not, not, not just to be able to offer neuro culturally competent healthcare to our patients, but taking a look at the access needs of our neurodivergent learners, most of whom have no idea that they are neurodivergent Biz: Mm-hm. And that will also help with the immense burnout we’ve been seeing in medicine. So again, it’s not, we’re not here just to help our patients, but to help our medical colleagues as well. Mel: Exactly. Because, you know, it is an epidemic of physician burnout, physician suicide, I mean, this is real. Right. So, so, and looking at the systemic issues that are incompatible with neural cultural competence. Biz: Absolutely. Mel: All right. Well thanks biz. It’s been nice talking with you. Biz: Thank you. I’m so glad we got to do this. Mel: Yay. Bye everybody.   Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

https://youtu.be/UIreD4b60bI     On this episode of the podcast, CDCI Executive Director Jesse Suter is joined by UVM University of Vermont Distinguished Professor Emeritus of Education Michael F. Giangreco. Giangreco shares memories, observations, and advice from his more than 30 years of service at CDCI. Dr. Giangreco is a widely published and respected innovator in the field of special education, as well as being the author of the much-loved cartoon series, Absurdities and Realities in Special Education. A full transcript of the episode appears below. 1 00:00:01,339 –> 00:00:03,922 (upbeat music) 2 00:00:10,140 –> 00:00:11,700 Hi, I’m Jesse Suter. 3 00:00:11,700 –> 00:00:13,920 I’m the Executive Director of the Center on Disability 4 00:00:13,920 –> 00:00:16,290 and Community Inclusion at the University of Vermont. 5 00:00:16,290 –> 00:00:18,540 I use he/him pronouns, and I’m really excited 6 00:00:18,540 –> 00:00:21,660 to be doing a podcast with Michael Giangreco. 7 00:00:21,660 –> 00:00:25,890 Michael, you are my mentor, colleague, and friend, 8 00:00:25,890 –> 00:00:30,100 and also University of Vermont Distinguished Professor 9 00:00:30,990 –> 00:00:34,230 Emeritus in Special Education. 10 00:00:34,230 –> 00:00:36,750 That’s still hard to say because we work together here 11 00:00:36,750 –> 00:00:39,243 for so long and you have retired. 12 00:00:40,170 –> 00:00:44,010 So thank you for doing this as a quick visual description. 13 00:00:44,010 –> 00:00:48,030 So I’m a white man in my 50s with no hair, 14 00:00:48,030 –> 00:00:49,560 some facial hair turning gray, 15 00:00:49,560 –> 00:00:51,990 and I’m wearing a pink striped shirt. 16 00:00:51,990 –> 00:00:54,900 And Michael, I think, distinguished professor 17 00:00:54,900 –> 00:00:56,610 is almost a good enough description, 18 00:00:56,610 –> 00:00:59,040 but you are a white man, a little bit older, 19 00:00:59,040 –> 00:01:00,090 a little more hair. 20 00:01:00,090 –> 00:01:03,090 You’re wearing brown glasses and a red sweater 21 00:01:03,090 –> 00:01:05,163 over a blue white striped shirt. 22 00:01:07,200 –> 00:01:08,400 Thank you for joining me today. 23 00:01:08,400 –> 00:01:09,270 Thank you. 24 00:01:09,270 –> 00:01:10,740 Glad to be here. 25 00:01:10,740 –> 00:01:14,130 So when I thought about sort of what we could talk about, 26 00:01:14,130 –> 00:01:17,490 ’cause we’ve talked with each other for a long time. 27 00:01:17,490 –> 00:01:21,480 We met, I think, when I was a graduate student. 28 00:01:21,480 –> 00:01:25,110 You’re at the center, and I always have to look 29 00:01:25,110 –> 00:01:29,697 at that wall over there, ’cause it’s my internship diploma. 30 00:01:31,239 –> 00:01:35,220 And it reminds me that my internship was in 2003. 31 00:01:35,220 –> 00:01:38,337 And so that must mean I met you the year before that, 32 00:01:38,337 –> 00:01:40,530 ’cause that’s when I left. 33 00:01:40,530 –> 00:01:44,250 And you were a big reason that I wanted to come back. 34 00:01:44,250 –> 00:01:46,830 So I went to graduate school here. 35 00:01:46,830 –> 00:01:48,690 We met during one of my placements here 36 00:01:48,690 –> 00:01:51,810 at the Center on Disability and Community Inclusion. 37 00:01:51,810 –> 00:01:56,040 And it was you and Ruth Hamilton and a few other people 38 00:01:56,040 –> 00:01:59,610 that just sort of introduced me to the heart 39 00:01:59,610 –> 00:02:04,440 and soul of this work, community inclusion. 40 00:02:04,440 –> 00:02:06,120 And so I wanted to come back immediately. 41 00:02:06,120 –> 00:02:07,503 So I did my internship, 42 00:02:08,550 –> 00:02:11,647 and I talked to Ruth and I said, 43 00:02:11,647 –> 00:02:12,750 “Can I come back, please? 44 00:02:12,750 –> 00:02:16,200 Is there anything I can do at the center?” 45 00:02:16,200 –> 00:02:18,420 And then you and I started working together 46 00:02:18,420 –> 00:02:21,360 more formally not long after that. 47 00:02:21,360 –> 00:02:23,280 Right, it was actually, 48 00:02:23,280 –> 00:02:28,170 I was asked to serve as your mentor 49 00:02:28,170 –> 00:02:29,610 through the mentoring program. 50 00:02:29,610 –> 00:02:30,600 Oh, that’s right, yeah. 51 00:02:30,600 –> 00:02:33,417 And then I realized very quickly how talented you were, 52 00:02:33,417 –> 00:02:36,030 and I wanted to you work on projects with me. 53 00:02:36,030 –> 00:02:37,560 Oh. 54 00:02:37,560 –> 00:02:39,330 I mean, so this is exactly why I was happy 55 00:02:39,330 –> 00:02:41,820 that you wanted to do this, ’cause you always make me 56 00:02:41,820 –> 00:02:44,910 feel so good about myself whenever we talk. 57 00:02:44,910 –> 00:02:49,110 So it’s all just an excuse for more of that. 58 00:02:49,110 –> 00:02:52,443 We’ve had many good years of collaboration and friendship. 59 00:02:53,460 –> 00:02:54,420 Yeah. 60 00:02:54,420 –> 00:02:57,660 So what I was thinking about what we could talk about, 61 00:02:57,660 –> 00:02:59,910 I just thought about all of our conversations 62 00:02:59,910 –> 00:03:01,470 that we’ve had since we met. 63 00:03:01,470 –> 00:03:06,470 And not only did you support me as a mentor professionally 64 00:03:08,370 –> 00:03:10,620 in terms of the research, but again, 65 00:03:10,620 –> 00:03:13,560 that heart and soul aspects of the job 66 00:03:13,560 –> 00:03:15,150 is something that was really absent 67 00:03:15,150 –> 00:03:18,570 from all of my training in clinical psychology 68 00:03:18,570 –> 00:03:20,040 and through graduate school. 69 00:03:20,040 –> 00:03:23,070 It was much more about, we do the research to come up 70 00:03:23,070 –> 00:03:24,960 with the best interventions and then the goal 71 00:03:24,960 –> 00:03:26,640 is to just get those interventions 72 00:03:26,640 –> 00:03:28,080 to as many people as we can. 73 00:03:28,080 –> 00:03:29,460 That was the whole model. 74 00:03:29,460 –> 00:03:31,560 That was the approach. 75 00:03:31,560 –> 00:03:33,750 And what I think about 76 00:03:33,750 –> 00:03:35,610 some of the first conversations we had, 77 00:03:35,610 –> 00:03:38,460 and I’d love to talk about this a little bit, 78 00:03:38,460 –> 00:03:43,320 which is you got into this area, as I recall, 79 00:03:43,320 –> 00:03:47,220 not because research was the solution for everything. 80 00:03:47,220 –> 00:03:49,170 That’s not how you improve the world. 81 00:03:49,170 –> 00:03:51,600 Yeah, I did get through research. 82 00:03:51,600 –> 00:03:52,433 Yeah. 83 00:03:52,433 –> 00:03:55,110 So I’d like to talk about kind of your journey. 84 00:03:55,110 –> 00:03:55,943 -Okay. -A little bit. 85 00:03:55,943 –> 00:03:57,180 So if we could kinda start there, 86 00:03:57,180 –> 00:04:00,360 so how you got into working with people with disabilities, 87 00:04:00,360 –> 00:04:04,083 got into schools, ’cause I always loved working this part. 88 00:04:05,160 –> 00:04:06,993 I got into it by accident. 89 00:04:07,860 –> 00:04:09,060 This is why I love it. 90 00:04:10,200 –> 00:04:15,200 As a student in high school, I was at best a marginal, 91 00:04:16,230 –> 00:04:19,023 maybe B minus student in high school. 92 00:04:20,513 –> 00:04:22,080 My high school teachers would be shocked 93 00:04:22,080 –> 00:04:24,423 to learn that I got a PhD. 94 00:04:25,320 –> 00:04:26,817 Did you tell any of ’em? 95 00:04:26,817 –> 00:04:28,050 No, I don’t think I ever did 96 00:04:28,050 –> 00:04:30,090 tell any of my high school teachers that. 97 00:04:30,090 –> 00:04:35,040 But the summer between my junior 98 00:04:35,040 –> 00:04:36,690 and senior year in high school, 99 00:04:36,690 –> 00:04:41,490 I was visiting some friends outside of Pittsburgh, 100 00:04:41,490 –> 00:04:44,400 a little place called Marysville, Pennsylvania. 101 00:04:44,400 –> 00:04:48,277 And one day when I was there, they said, 102 00:04:48,277 –> 00:04:49,260 “Oh, come with us. 103 00:04:49,260 –> 00:04:51,780 We’re volunteering at this day camp.” 104 00:04:51,780 –> 00:04:54,900 And they never thought to mention to me 105 00:04:54,900 –> 00:04:57,810 that it was a camp for students, 106 00:04:57,810 –> 00:05:00,993 children, youth with intellectual disability. 107 00:05:02,070 –> 00:05:06,810 So when I arrived there, they had kind of planned things 108 00:05:06,810 –> 00:05:09,127 that they were scheduled to do, and they were like, 109 00:05:09,127 –> 00:05:12,990 “Oh, just go here and play with these kids.” 110 00:05:12,990 –> 00:05:17,490 And I didn’t know what to do, 111 00:05:17,490 –> 00:05:22,490 because as a kid growing up in the 1950s and 1960s, 112 00:05:22,980 –> 00:05:26,103 kids with disabilities were not around. 113 00:05:28,140 –> 00:05:31,830 I mean, I have three strong memories from childhood 114 00:05:31,830 –> 00:05:33,540 of interacting with people that had 115 00:05:33,540 –> 00:05:35,670 pretty significant disabilities. 116 00:05:35,670 –> 00:05:38,620 One was a little girl who lived on our block 117 00:05:39,990 –> 00:05:43,410 who I know used a wheelchair for mobility. 118 00:05:43,410 –> 00:05:46,200 And I’m pretty sure she was non-verbal. 119 00:05:46,200 –> 00:05:48,780 And a bus came and picked her up every day 120 00:05:48,780 –> 00:05:52,290 and took her to some place that I don’t know where it went. 121 00:05:52,290 –> 00:05:57,290 And her parents took her on walks, but none of us knew her. 122 00:06:00,810 –> 00:06:02,700 That was pretty common. 123 00:06:02,700 –> 00:06:07,060 I also remember that one of my mother’s friends 124 00:06:08,400 –> 00:06:12,450 had a child at the time who was a teenager 125 00:06:12,450 –> 00:06:14,430 who had very severe cerebral palsy. 126 00:06:14,430 –> 00:06:17,310 I didn’t know it was cerebral palsy at the time. 127 00:06:17,310 –> 00:06:19,110 And I remember being at their house, 128 00:06:19,110 –> 00:06:23,550 and I had this distinct image of his mother 129 00:06:23,550 –> 00:06:26,253 feeding him a tuna fish sandwich. 130 00:06:27,750 –> 00:06:29,130 And I’d never encountered somebody 131 00:06:29,130 –> 00:06:31,440 with that level of disability before. 132 00:06:31,440 –> 00:06:35,430 And the third was, I remember in our elementary school, 133 00:06:35,430 –> 00:06:40,430 we had a classroom of kids who people made fun of. 134 00:06:41,760 –> 00:06:43,113 I remember that. 135 00:06:44,471 –> 00:06:48,750 And one of the reasons was because they weren’t our age. 136 00:06:48,750 –> 00:06:50,850 They were all older. 137 00:06:50,850 –> 00:06:53,820 They were kids old enough to have a five o’clock shadow. 138 00:06:53,820 –> 00:06:54,653 [Jesse] Yeah. 139 00:06:56,127 –> 00:06:58,530 But again, they didn’t eat in the cafeteria 140 00:06:58,530 –> 00:06:59,640 at the same time that we did. 141 00:06:59,640 –> 00:07:02,280 They were very segregated from us. 142 00:07:02,280 –> 00:07:04,170 We just didn’t know them. 143 00:07:04,170 –> 00:07:08,820 And so disability had never really been on my radar. 144 00:07:08,820 –> 00:07:10,743 But that day at the summer camp, 145 00:07:13,140 –> 00:07:15,630 it felt very natural to me. 146 00:07:15,630 –> 00:07:19,020 Like just interacting with people that, in this case, 147 00:07:19,020 –> 00:07:22,500 it was people with primarily intellectual disability. 148 00:07:22,500 –> 00:07:24,323 And I had fun. 149 00:07:24,323 –> 00:07:26,550 I mean, I really enjoyed it. 150 00:07:26,550 –> 00:07:28,710 And I thought, I didn’t know 151 00:07:28,710 –> 00:07:30,180 what I was going to college for. 152 00:07:30,180 –> 00:07:32,573 I didn’t have a profession in mind. 153 00:07:32,573 –> 00:07:33,463 And I thought, “You know what? 154 00:07:33,463 –> 00:07:35,490 I could do this. 155 00:07:35,490 –> 00:07:37,680 Maybe I’ll go to school for special education.” 156 00:07:37,680 –> 00:07:39,060 And so I did. 157 00:07:39,060 –> 00:07:42,377 And my first semester, or actually, 158 00:07:42,377 –> 00:07:44,340 it was my second semester in college, 159 00:07:44,340 –> 00:07:49,340 I ran into an old high school friend 160 00:07:49,980 –> 00:07:53,370 who was working at a summer camp, 161 00:07:53,370 –> 00:07:56,550 a residential summer camp called Cradle Beach Camp, 162 00:07:56,550 –> 00:07:59,610 outside of south of Buffalo and Angola, New York. 163 00:07:59,610 –> 00:08:01,740 And she encouraged me to apply. 164 00:08:01,740 –> 00:08:04,620 And that was one of the most important 165 00:08:04,620 –> 00:08:06,870 decisions I ever made in my life, 166 00:08:06,870 –> 00:08:11,490 because Cradle Beach has been around since 1888. 167 00:08:14,040 –> 00:08:16,380 It first was considered what was called 168 00:08:16,380 –> 00:08:21,380 a “Fresh Air” mission, which was to bring economically 169 00:08:21,690 –> 00:08:24,780 disadvantaged inner city children to the country 170 00:08:24,780 –> 00:08:27,090 to try to put some weight on them 171 00:08:27,090 –> 00:08:28,743 and give them some fresh air. 172 00:08:30,000 –> 00:08:32,100 And then after World War II, 173 00:08:32,100 –> 00:08:35,490 they started including children with disabilities. 174 00:08:35,490 –> 00:08:37,830 First, separately at a separate time. 175 00:08:37,830 –> 00:08:41,760 But then within a few years following World War II, 176 00:08:41,760 –> 00:08:46,760 they started integrating children with disabilities 177 00:08:46,830 –> 00:08:51,630 and their non-disabled peers at the camp. 178 00:08:51,630 –> 00:08:54,420 And it was very unique. 179 00:08:54,420 –> 00:08:58,680 And it still is unique today in terms of a place 180 00:08:58,680 –> 00:09:00,630 where kids with and without disabilities 181 00:09:00,630 –> 00:09:02,220 go to camp together. 182 00:09:02,220 –> 00:09:07,220 And the one downside of it, so to speak, 183 00:09:07,500 –> 00:09:10,200 is the fact that it’s a bit out of proportion 184 00:09:10,200 –> 00:09:12,720 in terms of there’s proportionally 185 00:09:12,720 –> 00:09:16,470 more children with various disabilities 186 00:09:16,470 –> 00:09:19,140 than there are kids without disabilities. 187 00:09:19,140 –> 00:09:20,250 It’s about half and half. 188 00:09:20,250 –> 00:09:22,350 And that’s kind of out of proportion 189 00:09:22,350 –> 00:09:24,510 to what you’d see in the real world. 190 00:09:24,510 –> 00:09:26,970 But one of the things that it did, it did two things for me. 191 00:09:26,970 –> 00:09:31,560 One was it exposed me to an enormous range 192 00:09:31,560 –> 00:09:35,610 of different types of physical, intellectual, 193 00:09:35,610 –> 00:09:38,520 emotional, sensory disabilities. 194 00:09:38,520 –> 00:09:40,530 But the more important part, 195 00:09:40,530 –> 00:09:42,150 and I did this for seven summers 196 00:09:42,150 –> 00:09:43,713 -during college. -Wow. 197 00:09:44,790 –> 00:09:47,640 And then my early teaching career 198 00:09:47,640 –> 00:09:51,120 was that I was living in community 199 00:09:51,120 –> 00:09:52,893 with people with disabilities. 200 00:09:52,893 –> 00:09:56,250 And we also had a lot of counselors and staff 201 00:09:56,250 –> 00:09:58,683 who had disabilities of various sorts. 202 00:09:59,610 –> 00:10:02,010 The guy who ran the arts and crafts program 203 00:10:02,010 –> 00:10:04,233 had severe cerebral palsy. 204 00:10:05,340 –> 00:10:06,750 We had counselors who were deaf, 205 00:10:06,750 –> 00:10:11,340 counselors who were blind, counselors that had different 206 00:10:11,340 –> 00:10:13,923 physical or orthopedic disabilities. 207 00:10:16,380 –> 00:10:21,000 It was just an amazing kind of mix of people. 208 00:10:21,000 –> 00:10:26,000 And we were together 24/7 for, 209 00:10:26,340 –> 00:10:28,713 our camp sessions were two weeks at a time. 210 00:10:29,929 –> 00:10:33,120 There were 200 kids at the camp at one time. 211 00:10:33,120 –> 00:10:34,420 That was really big, yeah. 212 00:10:34,420 –> 00:10:38,670 Yeah, and like a hundred staff. 213 00:10:38,670 –> 00:10:43,670 And we ate together and we slept in cabins together, 214 00:10:45,840 –> 00:10:47,127 and we camped together. 215 00:10:47,127 –> 00:10:51,090 And our whole purpose was having fun. 216 00:10:51,090 –> 00:10:52,050 -Safely. -It was camp. 217 00:10:52,050 –> 00:10:53,140 It was camp. 218 00:10:53,140 –> 00:10:54,450 -Yeah. -And anything 219 00:10:54,450 –> 00:10:56,700 that any other kid could do, 220 00:10:56,700 –> 00:10:58,380 any kid with a disability could do. 221 00:10:58,380 –> 00:11:02,670 And we just thought, and none of us were trained, really. 222 00:11:02,670 –> 00:11:04,710 And there was a little bit of orientation, 223 00:11:04,710 –> 00:11:07,293 but it was really more of a mindset. 224 00:11:08,610 –> 00:11:11,577 These are kids, and we’re gonna do fun kid things, 225 00:11:11,577 –> 00:11:13,932 and we’re gonna do them all together. 226 00:11:13,932 –> 00:11:15,900 And if there’s some barrier in the way, 227 00:11:15,900 –> 00:11:18,693 we’ll figure out a way to make it work. 228 00:11:20,340 –> 00:11:22,680 And it was a grand, I mean, 229 00:11:22,680 –> 00:11:26,550 it was a grand time and it was probably 230 00:11:26,550 –> 00:11:29,670 one of the most meaningful things in terms of, 231 00:11:29,670 –> 00:11:31,500 you mentioned kind of the heart and soul, 232 00:11:31,500 –> 00:11:36,500 because you never can know exactly what it’s like 233 00:11:38,400 –> 00:11:42,270 to be the parent of a child that has a severe disability 234 00:11:42,270 –> 00:11:44,670 or some kind of really intensive need. 235 00:11:44,670 –> 00:11:47,430 But you get a tiny glimpse of it 236 00:11:47,430 –> 00:11:50,730 when you’re living in a residential situation, 237 00:11:50,730 –> 00:11:54,420 because for kids that needed it, 238 00:11:54,420 –> 00:11:58,800 we were dressing them, we were changing diapers, 239 00:11:58,800 –> 00:12:02,610 we were feeding kids, we were carrying them 240 00:12:02,610 –> 00:12:04,653 from their wheelchairs into the pool. 241 00:12:05,520 –> 00:12:08,370 We were doing everything that a parent would do. 242 00:12:08,370 –> 00:12:09,870 We were up in the middle of the night 243 00:12:09,870 –> 00:12:13,470 if somebody woke up with a nightmare. 244 00:12:13,470 –> 00:12:16,020 And so you got a small glimpse of that. 245 00:12:16,020 –> 00:12:20,040 But the cool thing about the socialization of it 246 00:12:20,040 –> 00:12:23,340 was we weren’t there to be their teacher. 247 00:12:23,340 –> 00:12:25,410 We weren’t there to be their counselor. 248 00:12:25,410 –> 00:12:28,314 We were there to have fun together. 249 00:12:28,314 –> 00:12:31,530 And it just created, 250 00:12:31,530 –> 00:12:34,800 I think in many ways it kind of inoculated me 251 00:12:34,800 –> 00:12:38,220 from some of the professional socialization 252 00:12:38,220 –> 00:12:40,590 that puts professionals here 253 00:12:40,590 –> 00:12:42,540 and people with disabilities here. 254 00:12:42,540 –> 00:12:45,270 I mean, there certainly is always a power and balance 255 00:12:45,270 –> 00:12:48,540 when you’ve got a child and adult, a camper and a counselor. 256 00:12:48,540 –> 00:12:53,540 But it’s different than kind of professional socialization. 257 00:12:53,760 –> 00:12:55,590 So that was super influential. 258 00:12:55,590 –> 00:12:59,463 And then one of the people that worked at the camp, 259 00:13:01,290 –> 00:13:02,940 it was actually a married couple at the time. 260 00:13:02,940 –> 00:13:07,350 They worked in the only group home that was available. 261 00:13:07,350 –> 00:13:10,140 Remember, this is the mid-1970s. 262 00:13:10,140 –> 00:13:13,830 The institutionalization is just getting started. 263 00:13:13,830 –> 00:13:17,310 And group homes were like brand new. 264 00:13:17,310 –> 00:13:20,220 There was one in Western New York. 265 00:13:20,220 –> 00:13:23,460 Granger Place on the west side of Buffalo. 266 00:13:23,460 –> 00:13:28,460 I volunteered there and did some internship credits there. 267 00:13:29,880 –> 00:13:32,630 And then I ended up getting a job. 268 00:13:32,630 –> 00:13:36,180 In the last two and a half years I was in college, 269 00:13:36,180 –> 00:13:38,373 -I was working full-time. -[Jesse] Oh wow. 270 00:13:38,373 –> 00:13:41,490 At a group home for adults 271 00:13:41,490 –> 00:13:44,340 with developmental disabilities. 272 00:13:44,340 –> 00:13:46,230 Mostly those with intellectual, 273 00:13:46,230 –> 00:13:48,210 all of them had intellectual disabilities. 274 00:13:48,210 –> 00:13:51,213 Some of them had other disabilities as well. 275 00:13:52,290 –> 00:13:54,240 About how big was the group home? 276 00:13:54,240 –> 00:13:55,800 Like people who were living there? 277 00:13:55,800 –> 00:13:58,890 There were six residents in the group home. 278 00:13:58,890 –> 00:14:03,510 And today, we have kind of more natural options 279 00:14:03,510 –> 00:14:05,460 than congregating people in group homes. 280 00:14:05,460 –> 00:14:08,190 But at the time, it was kind of an innovation. 281 00:14:08,190 –> 00:14:10,620 Yeah, as opposed to a big institution. 282 00:14:10,620 –> 00:14:11,463 Right. 283 00:14:13,410 –> 00:14:18,090 Originally, I was working in the 11-7 shift. 284 00:14:18,090 –> 00:14:21,330 But I was really, I was showing up at dinner time. 285 00:14:21,330 –> 00:14:22,650 I was having dinner with the residents, 286 00:14:22,650 –> 00:14:25,710 hanging around in the evening and doing my homework. 287 00:14:25,710 –> 00:14:29,220 And then I was responsible to be there overnight, 288 00:14:29,220 –> 00:14:32,700 and in the morning to get them making their breakfast 289 00:14:32,700 –> 00:14:37,700 and off to work or day programs that they were in. 290 00:14:38,070 –> 00:14:43,070 And again, the goal was helping people live their life. 291 00:14:45,000 –> 00:14:47,250 And none of us knew what we were doing. 292 00:14:47,250 –> 00:14:52,250 I mean, they hired a 19-year-old kid. (laughs) 293 00:14:52,380 –> 00:14:55,950 That gives you an idea of how devalued, you know. 294 00:14:55,950 –> 00:14:59,190 Like a 19-year-old kid that is still in college 295 00:14:59,190 –> 00:15:01,050 could get a job doing this. 296 00:15:01,050 –> 00:15:02,730 I mean, those were the exact same options 297 00:15:02,730 –> 00:15:04,590 that were options for me 298 00:15:04,590 –> 00:15:06,660 in graduate school in mental health, 299 00:15:06,660 –> 00:15:08,820 ’cause we had the same thing, but we had overhead programs 300 00:15:08,820 –> 00:15:10,710 or residential treatment centers. 301 00:15:10,710 –> 00:15:12,540 And some of them were small and some of them were big. 302 00:15:12,540 –> 00:15:17,160 But yeah, that’s who you hired to have the overnight shift. 303 00:15:17,160 –> 00:15:17,993 Yeah. 304 00:15:17,993 –> 00:15:19,980 And then later, actually, during student teaching, 305 00:15:19,980 –> 00:15:23,850 I had the 3-11 shift, and the group home 306 00:15:23,850 –> 00:15:27,690 gave me some flexibility once residents 307 00:15:27,690 –> 00:15:30,100 were kind of getting ready to go to sleep 308 00:15:31,590 –> 00:15:34,743 to do my lesson planning and stuff like that. 309 00:15:35,910 –> 00:15:40,380 But I think that basically, I was living with people 310 00:15:40,380 –> 00:15:45,380 with disabilities in community for several years. 311 00:15:46,380 –> 00:15:49,470 And that’s a really different experience 312 00:15:49,470 –> 00:15:51,060 than just showing up and seeing people 313 00:15:51,060 –> 00:15:54,450 at school or a clinic or something and then going. 314 00:15:54,450 –> 00:15:57,390 So now, then I became a teacher, special ed teacher, 315 00:15:57,390 –> 00:16:02,310 and I was there at the beginning of the IDEA. 316 00:16:03,870 –> 00:16:05,280 Whether it was, of course, 317 00:16:05,280 –> 00:16:08,730 then it was originally called EHA, 318 00:16:08,730 –> 00:16:11,253 the Education for All Handicapped Children’s Act. 319 00:16:13,050 –> 00:16:17,130 But as you know, and probably many of the listeners 320 00:16:17,130 –> 00:16:20,130 know that law passed in 1975, 321 00:16:20,130 –> 00:16:24,210 but it wasn’t to be enacted until 1977. 322 00:16:24,210 –> 00:16:27,150 They gave schools two years to ramp up, 323 00:16:27,150 –> 00:16:29,400 in states, two years to ramp up. 324 00:16:29,400 –> 00:16:34,400 And my first year of teaching was the ’77, ’78 school year. 325 00:16:37,140 –> 00:16:39,390 I started in January, but it was the ’77, 326 00:16:39,390 –> 00:16:41,409 it was the very first year 327 00:16:41,409 –> 00:16:43,920 of the federal law being in place. 328 00:16:43,920 –> 00:16:47,670 I was a preschool special ed teacher in a rural, 329 00:16:47,670 –> 00:16:49,830 very, very rural community. 330 00:16:49,830 –> 00:16:50,880 I didn’t remember it was preschool. 331 00:16:50,880 –> 00:16:52,953 Yeah, preschool special ed. 332 00:16:54,180 –> 00:16:56,370 We had some kids that were there for a morning session, 333 00:16:56,370 –> 00:16:59,013 some for an afternoon, and some that stayed all day. 334 00:17:00,180 –> 00:17:03,000 And I worked with a team there. 335 00:17:03,000 –> 00:17:07,110 And then I had two other teaching experiences. 336 00:17:07,110 –> 00:17:08,760 These were all in New York state. 337 00:17:10,530 –> 00:17:13,785 Starting up in Plattsburgh the next year, 338 00:17:13,785 –> 00:17:18,420 the first classroom, and again, 339 00:17:18,420 –> 00:17:20,730 this was during an era of segregation, 340 00:17:20,730 –> 00:17:24,360 particularly of people with severe disabilities. 341 00:17:24,360 –> 00:17:27,840 The first public school classroom for kids 342 00:17:27,840 –> 00:17:32,840 with what was then called severe and profound disabilities. 343 00:17:33,360 –> 00:17:36,660 So I had kids with blindness, kids with severe autism, 344 00:17:36,660 –> 00:17:40,860 kids with severe intellectual disability, you name it. 345 00:17:40,860 –> 00:17:44,490 They were in there and they were from 5 to 21. 346 00:17:44,490 –> 00:17:46,890 And it was in the wing of a vocational center, 347 00:17:46,890 –> 00:17:50,703 but it was a special ed kind of segregated setting. 348 00:17:52,380 –> 00:17:55,380 It was the very first public school program. 349 00:17:55,380 –> 00:17:59,340 And the personnel preparation programs at that time 350 00:17:59,340 –> 00:18:01,170 didn’t prepare you to work with kids 351 00:18:01,170 –> 00:18:03,810 with more intensive needs. 352 00:18:03,810 –> 00:18:08,670 So I’m winging it based on camping. 353 00:18:08,670 –> 00:18:09,720 Right. 354 00:18:09,720 –> 00:18:11,379 Well, it sounds very similar to the camp 355 00:18:11,379 –> 00:18:12,212 where you guys were, 356 00:18:12,212 –> 00:18:14,670 it was just a community figuring it out. 357 00:18:14,670 –> 00:18:15,747 Yeah, I mean, 358 00:18:15,747 –> 00:18:18,030 and IEPs were brand new. 359 00:18:18,030 –> 00:18:22,770 So one of the things that I learned quickly 360 00:18:22,770 –> 00:18:25,320 was right across the lake from me. 361 00:18:25,320 –> 00:18:26,940 Here at the University of Vermont, 362 00:18:26,940 –> 00:18:29,010 there was a new federally funded 363 00:18:29,010 –> 00:18:32,190 personnel preparation program to prepare teachers 364 00:18:32,190 –> 00:18:35,520 to work with students who had severe multiple disabilities. 365 00:18:35,520 –> 00:18:40,500 And so I got on the ferry at Cumberland Head 366 00:18:40,500 –> 00:18:44,700 and came across Lake Champlain twice a week. 367 00:18:44,700 –> 00:18:48,466 And during the summer, over a year and a half period, 368 00:18:48,466 –> 00:18:52,290 to get my master’s degree focused on students 369 00:18:52,290 –> 00:18:53,757 with severe and multiple disabilities. 370 00:18:53,757 –> 00:18:57,063 And that was absolutely invaluable. 371 00:18:58,290 –> 00:19:00,420 So was the master’s program connected to the center? 372 00:19:00,420 –> 00:19:01,740 I know there was faculty that worked. 373 00:19:01,740 –> 00:19:02,610 Absolutely, yeah. 374 00:19:02,610 –> 00:19:03,840 It was connected to the center. 375 00:19:03,840 –> 00:19:05,740 Yeah, so that’s how you became connected to us first. 376 00:19:05,740 –> 00:19:09,079 Yeah, that’s how I got connected to the center. 377 00:19:09,079 –> 00:19:12,000 So I taught, then for a short time, 378 00:19:12,000 –> 00:19:13,950 I went down to Virginia, 379 00:19:13,950 –> 00:19:16,440 worked at the University of Virginia 380 00:19:16,440 –> 00:19:17,970 Children’s Rehabilitation Center 381 00:19:17,970 –> 00:19:21,513 as an outpatient orthopedic clinics. 382 00:19:23,250 –> 00:19:25,230 Did some graduate work down there. 383 00:19:25,230 –> 00:19:27,510 Did an EDS degree in special ed down there 384 00:19:27,510 –> 00:19:30,210 with some wonderful people, 385 00:19:30,210 –> 00:19:32,700 but really talented, talented folks. 386 00:19:32,700 –> 00:19:37,700 And then went back to teaching and taught in Ithaca. 387 00:19:38,940 –> 00:19:43,590 And then from there, became a special ed administrator, 388 00:19:43,590 –> 00:19:46,890 where I really got into desegregating 389 00:19:46,890 –> 00:19:49,500 some programs in Auburn, New York 390 00:19:49,500 –> 00:19:51,960 with a wonderful team of people there. 391 00:19:51,960 –> 00:19:53,490 And while I was doing that, 392 00:19:53,490 –> 00:19:58,200 I did my doctoral degree at Syracuse. 393 00:19:58,200 –> 00:20:02,163 And when I finished, folks here at the center said, 394 00:20:03,307 –> 00:20:05,640 “We have an opening for a grant position.” 395 00:20:05,640 –> 00:20:10,640 And we joke about it now, but I almost didn’t get that job. 396 00:20:11,820 –> 00:20:13,560 Even though there were only two applicants, 397 00:20:13,560 –> 00:20:15,240 I almost didn’t get that job. 398 00:20:15,240 –> 00:20:16,350 That’s come up a few times. 399 00:20:16,350 –> 00:20:19,620 But I did get that job and that led 400 00:20:19,620 –> 00:20:22,260 to a 34-year career here. 401 00:20:22,260 –> 00:20:24,330 But the thing is that the research 402 00:20:24,330 –> 00:20:28,800 that I ended up doing was all related 403 00:20:28,800 –> 00:20:32,940 to challenges that I either encountered 404 00:20:32,940 –> 00:20:37,940 personally in 13 years of working in the field 405 00:20:38,640 –> 00:20:41,531 or things that I thought were really holes 406 00:20:41,531 –> 00:20:43,830 in the literature. 407 00:20:43,830 –> 00:20:44,850 Right. 408 00:20:44,850 –> 00:20:46,470 And so that’s another big transition 409 00:20:46,470 –> 00:20:48,150 that I wanna talk about was from teaching 410 00:20:48,150 –> 00:20:50,310 and administration to research. 411 00:20:50,310 –> 00:20:52,230 So that first grant that you came to, 412 00:20:52,230 –> 00:20:54,000 was that a research position, 413 00:20:54,000 –> 00:20:58,110 or were the future projects that you worked on research? 414 00:20:58,110 –> 00:20:59,700 The first grant was a grant 415 00:20:59,700 –> 00:21:02,970 that had been originally co-written by Wayne Fox, 416 00:21:02,970 –> 00:21:04,830 who was the longtime director 417 00:21:04,830 –> 00:21:07,350 of the center and Chigee Cloninger. 418 00:21:07,350 –> 00:21:11,100 It was a project to support students 419 00:21:11,100 –> 00:21:13,860 who were on the Vermont DeafBlind Register. 420 00:21:13,860 –> 00:21:15,780 We now called it sensory impairment. 421 00:21:15,780 –> 00:21:19,030 But at the time, it was the DeafBlind Register 422 00:21:20,790 –> 00:21:23,250 in inclusive classrooms around Vermont. 423 00:21:23,250 –> 00:21:26,130 And I became part of the Vermont eye team, 424 00:21:26,130 –> 00:21:29,400 and I serve statewide, supporting schools 425 00:21:29,400 –> 00:21:32,610 who were working with kids who were on the register. 426 00:21:32,610 –> 00:21:36,900 Now, for people who maybe are not in the deafblind 427 00:21:36,900 –> 00:21:39,330 or dual sensory field, 428 00:21:39,330 –> 00:21:42,760 people often think of like Helen Keller 429 00:21:43,920 –> 00:21:47,040 as a classic example of somebody who’s deafblind. 430 00:21:47,040 –> 00:21:50,970 There was not the population that we were serving. 431 00:21:50,970 –> 00:21:54,273 The vast, vast majority of students. 432 00:21:55,200 –> 00:22:00,000 And there were only about, I think, 28 or 30 statewide 433 00:22:00,000 –> 00:22:03,440 who were considered deafblind or at risk of deafblind 434 00:22:03,440 –> 00:22:05,493 as they met certain criteria. 435 00:22:07,770 –> 00:22:09,630 They were almost all students 436 00:22:09,630 –> 00:22:13,203 with quite intensive multiple disabilities. 437 00:22:14,880 –> 00:22:17,550 Very few had verbal language, 438 00:22:17,550 –> 00:22:21,930 very few had the physical capability to use sign language 439 00:22:21,930 –> 00:22:25,860 because of severe orthopedic disability. 440 00:22:25,860 –> 00:22:30,570 And so it was very difficult to really fully know 441 00:22:30,570 –> 00:22:33,753 what their cognitive abilities were. 442 00:22:35,610 –> 00:22:38,100 We did what I think everybody 443 00:22:38,100 –> 00:22:42,240 at the Center on Disability believes in, 444 00:22:42,240 –> 00:22:44,040 which is we made decisions based on 445 00:22:44,040 –> 00:22:45,870 the least dangerous assumption. 446 00:22:45,870 –> 00:22:50,370 So we approached everyone as if they were cognitively 447 00:22:50,370 –> 00:22:53,310 capable because that was the least 448 00:22:53,310 –> 00:22:54,870 dangerous way to approach them. 449 00:22:54,870 –> 00:22:55,703 [Jesse] Right. 450 00:22:57,000 –> 00:22:58,983 And so that led to, 451 00:23:00,600 –> 00:23:03,750 that was a grant-funded position, 452 00:23:03,750 –> 00:23:06,180 which was only gonna last for three years. 453 00:23:06,180 –> 00:23:08,130 And the only way I could stay at the university 454 00:23:08,130 –> 00:23:11,100 was to start writing my own grants, which I did. 455 00:23:11,100 –> 00:23:14,670 And that first grant was a model demonstration grant. 456 00:23:14,670 –> 00:23:17,250 And then I wrote a series of research grants 457 00:23:17,250 –> 00:23:20,010 and model demonstration grants and training grants 458 00:23:20,010 –> 00:23:25,010 over the next 20 years to fund myself and others here. 459 00:23:27,450 –> 00:23:29,400 And that’s where we started getting into 460 00:23:29,400 –> 00:23:34,400 some research and related services, decision-making, 461 00:23:35,610 –> 00:23:38,313 and paraprofessionals and service delivery. 462 00:23:39,330 –> 00:23:42,150 Yeah, that’s what got the ball rolling. 463 00:23:42,150 –> 00:23:43,230 Right. 464 00:23:43,230 –> 00:23:45,900 And I mean, and you talk about sort of getting into research 465 00:23:45,900 –> 00:23:48,000 because you needed the funding in order to stay here. 466 00:23:48,000 –> 00:23:49,620 And that was true for everybody. 467 00:23:49,620 –> 00:23:52,200 But I don’t think there were many researchers here. 468 00:23:52,200 –> 00:23:53,650 There certainly aren’t today. 469 00:23:54,660 –> 00:23:56,520 So there’s lots of people that were writing grants, 470 00:23:56,520 –> 00:23:58,740 but they might be a personnel preparation grant 471 00:23:58,740 –> 00:24:00,333 or a training grant. 472 00:24:00,333 –> 00:24:03,543 Even when we were doing model demonstration grants, 473 00:24:04,830 –> 00:24:08,100 I think that having gone through 474 00:24:08,100 –> 00:24:11,610 three graduate programs at Vermont, 475 00:24:11,610 –> 00:24:13,710 then Virginia, then Syracuse, 476 00:24:13,710 –> 00:24:17,970 I was exposed to a number of scholars 477 00:24:17,970 –> 00:24:22,970 who kind of socialized me to think 478 00:24:24,210 –> 00:24:26,910 that if I was doing something 479 00:24:26,910 –> 00:24:31,593 that was useful or potentially valuable, 480 00:24:32,730 –> 00:24:35,760 that I needed to disseminate it. 481 00:24:35,760 –> 00:24:40,157 And that the best way to disseminate it was through writing. 482 00:24:43,650 –> 00:24:45,570 I was doing presentations as well. 483 00:24:45,570 –> 00:24:48,453 But through writing and through published research, 484 00:24:50,010 –> 00:24:52,887 I felt like I was, in schools., 485 00:24:54,406 –> 00:24:55,620 I had opportunities to do 486 00:24:55,620 –> 00:24:58,320 a lot of observing and collecting data. 487 00:24:58,320 –> 00:25:01,800 And I was trained as a single subject researcher. 488 00:25:01,800 –> 00:25:05,880 And I did single subject research in my early career, 489 00:25:05,880 –> 00:25:07,083 but not here. 490 00:25:08,250 –> 00:25:13,020 Once I got into the schools, the nature of my research 491 00:25:13,020 –> 00:25:17,910 changed based on what schools would allow. 492 00:25:17,910 –> 00:25:18,743 Sure. 493 00:25:19,800 –> 00:25:22,410 So a lot of the research that I did 494 00:25:22,410 –> 00:25:24,360 was descriptive research, 495 00:25:24,360 –> 00:25:28,350 both qualitative and quantitative descriptive research. 496 00:25:28,350 –> 00:25:31,590 And some of it was, a little bit of it 497 00:25:31,590 –> 00:25:33,630 was quasi-experimental, 498 00:25:33,630 –> 00:25:36,810 and some of it was evaluation research. 499 00:25:36,810 –> 00:25:41,310 But we pretty much, throughout all of my projects, 500 00:25:41,310 –> 00:25:45,840 we always took data and we always shared it. 501 00:25:45,840 –> 00:25:48,390 And sometimes we shared, 502 00:25:48,390 –> 00:25:51,030 we ended up sharing things that we didn’t intend. 503 00:25:51,030 –> 00:25:55,680 Like the whole strand of the work 504 00:25:55,680 –> 00:25:59,100 that was done at the center partially that I led 505 00:25:59,100 –> 00:26:01,773 on paraprofessionals in inclusive schools, 506 00:26:03,390 –> 00:26:05,820 we didn’t start that with a grant on paraprofessionals. 507 00:26:05,820 –> 00:26:07,950 -Right. -That started with a grant 508 00:26:07,950 –> 00:26:11,430 on unrelated services for kids with deafblindness. 509 00:26:11,430 –> 00:26:16,430 And we ended up with a ton of data related 510 00:26:17,280 –> 00:26:22,280 to paraprofessionals that was not part of our grant plan. 511 00:26:22,440 –> 00:26:25,297 But I remember talking to the team and saying, 512 00:26:25,297 –> 00:26:28,533 “I think we’ve got some pretty interesting stuff here. 513 00:26:29,617 –> 00:26:32,400 I think we should really analyze these data.” 514 00:26:32,400 –> 00:26:37,353 And it ended up with the publication of an article called, 515 00:26:39,120 –> 00:26:42,240 something like Helping or Hovering Effects 516 00:26:42,240 –> 00:26:44,550 of Instructional Assistant Proximity 517 00:26:44,550 –> 00:26:47,380 on Students With Disabilities. 518 00:26:47,380 –> 00:26:48,669 That sounds like the exact title. 519 00:26:48,669 –> 00:26:49,502 -It might be. -Okay. 520 00:26:49,502 –> 00:26:50,335 It might be. 521 00:26:50,335 –> 00:26:51,168 Just something like that. 522 00:26:51,168 –> 00:26:52,001 It’s pretty close to that. 523 00:26:52,001 –> 00:26:54,323 It’s definitely starts with helping or hovering, 524 00:26:55,290 –> 00:26:59,373 but it was published in 1997 in Exceptional Children. 525 00:27:01,140 –> 00:27:06,140 And that article turned out to be really a turning point 526 00:27:08,250 –> 00:27:10,800 or a demarcation point in the literature 527 00:27:10,800 –> 00:27:12,573 related to paraprofessionals, 528 00:27:14,250 –> 00:27:19,250 and has become kind of a seminal article 529 00:27:19,680 –> 00:27:21,840 along with another one that came out 530 00:27:21,840 –> 00:27:24,390 of an early grant called “I’ve Counted Jon”. 531 00:27:24,390 –> 00:27:26,550 Transformational experiences of students 532 00:27:26,550 –> 00:27:29,700 with disabilities in regular classes. 533 00:27:29,700 –> 00:27:32,400 Those both came out of early grants 534 00:27:32,400 –> 00:27:33,903 and early data collection. 535 00:27:35,580 –> 00:27:38,070 Yeah, well, I mean, so I mentioned at the beginning, 536 00:27:38,070 –> 00:27:41,310 some of the things that I gained from our mentorship 537 00:27:41,310 –> 00:27:43,950 and that idea of research is communication 538 00:27:43,950 –> 00:27:47,730 and sort of really like giving back, in a sense, 539 00:27:47,730 –> 00:27:50,970 ’cause as you described in your own journey, 540 00:27:50,970 –> 00:27:53,130 and I don’t think it’s really changed much, 541 00:27:53,130 –> 00:27:57,060 schools and different communities are left on their own 542 00:27:57,060 –> 00:27:58,440 to figure things out. 543 00:27:58,440 –> 00:28:00,300 And they might come up with amazing solutions 544 00:28:00,300 –> 00:28:01,830 that are exactly what they needed, 545 00:28:01,830 –> 00:28:03,870 or they might really spend a lot of time 546 00:28:03,870 –> 00:28:05,847 -reinventing the wheel. -Yeah. 547 00:28:05,847 –> 00:28:08,610 And so this idea that no, when you do something, 548 00:28:08,610 –> 00:28:10,200 you should share it. 549 00:28:10,200 –> 00:28:13,350 Again, my own, whether it’s more traditional 550 00:28:13,350 –> 00:28:15,630 or just different experience in research, 551 00:28:15,630 –> 00:28:18,210 was always, no, you do research because it’s almost like 552 00:28:18,210 –> 00:28:21,660 that’s the widgets we create as researchers, 553 00:28:21,660 –> 00:28:23,370 or it’s part of career advancement. 554 00:28:23,370 –> 00:28:26,073 It’s something that’s a pressure that you need to do. 555 00:28:27,452 –> 00:28:29,850 And in sort of just a demonstration of your accomplishments 556 00:28:29,850 –> 00:28:32,190 in and of themselves as opposed to, 557 00:28:32,190 –> 00:28:34,350 no, it’s a communication tool. 558 00:28:34,350 –> 00:28:35,970 It’s just a way of sharing. 559 00:28:35,970 –> 00:28:40,050 It’s one of the reasons why in many of the articles 560 00:28:40,050 –> 00:28:42,900 that I wrote over the year, I tried to have 561 00:28:42,900 –> 00:28:45,840 some kind of catchy little subtitle 562 00:28:45,840 –> 00:28:47,820 or beginning, like helping her hovering. 563 00:28:47,820 –> 00:28:49,440 People remember that. 564 00:28:49,440 –> 00:28:51,870 Or “I’ve Counted Jon”, they remember that 565 00:28:51,870 –> 00:28:55,980 as opposed to some long academic title. 566 00:28:55,980 –> 00:28:56,813 Right. 567 00:28:56,813 –> 00:28:58,170 -Precarious or purposeful. -Right. 568 00:28:58,170 –> 00:28:59,820 Yeah, yeah. 569 00:28:59,820 –> 00:29:01,233 -Simple, not easy. -Yeah. 570 00:29:02,340 –> 00:29:04,170 Just little phrases that, 571 00:29:04,170 –> 00:29:08,220 because I was always really conscious of, 572 00:29:08,220 –> 00:29:11,220 I’m doing this because I’m trying to influence 573 00:29:11,220 –> 00:29:15,120 certain people to improve opportunities 574 00:29:15,120 –> 00:29:17,220 and supports for people with disabilities. 575 00:29:17,220 –> 00:29:18,690 So who’s my audience? 576 00:29:18,690 –> 00:29:21,990 My audience, teachers, principals, 577 00:29:21,990 –> 00:29:24,843 special ed directors, to some extent, parents. 578 00:29:26,880 –> 00:29:29,730 So it was one of the reasons, it’s interesting, 579 00:29:29,730 –> 00:29:32,760 I came out of Syracuse, and for people that know 580 00:29:32,760 –> 00:29:36,000 higher education at that time, and this would’ve been 581 00:29:36,000 –> 00:29:39,543 in the mid-80s to the late 80s, 582 00:29:40,590 –> 00:29:43,530 Syracuse was a hotbed of qualitative research. 583 00:29:43,530 –> 00:29:46,720 Some of the people who were writing the most 584 00:29:48,480 –> 00:29:52,140 like widely used qualitative textbooks at the time, 585 00:29:52,140 –> 00:29:54,630 Steven Taylor, Robert Bogdan, 586 00:29:54,630 –> 00:29:57,573 Sarah Beckwin were at Syracuse. 587 00:29:58,680 –> 00:30:02,583 And most of my classmates there were on a qualitative track. 588 00:30:04,020 –> 00:30:04,920 And I was not. 589 00:30:04,920 –> 00:30:08,430 I was on a quantitative track, which was different. 590 00:30:08,430 –> 00:30:12,690 But all of us who went to Syracuse were all exposed 591 00:30:12,690 –> 00:30:16,740 at least at a introductory level to qualitative research. 592 00:30:16,740 –> 00:30:20,943 And interestingly, I always saw the value in it, 593 00:30:22,869 –> 00:30:26,337 and I started really doing it more fully 594 00:30:29,010 –> 00:30:30,963 once I left Syracuse. 595 00:30:33,060 –> 00:30:37,507 And my two most cited articles ever 596 00:30:39,030 –> 00:30:41,820 are qualitative, and a couple of others 597 00:30:41,820 –> 00:30:45,870 that are qualitative are also among the kind of most used. 598 00:30:45,870 –> 00:30:49,050 And when I look at it and when I know 599 00:30:49,050 –> 00:30:51,690 about the feedback I’ve received from people, 600 00:30:51,690 –> 00:30:53,700 it’s because people relate to it. 601 00:30:53,700 –> 00:30:55,590 They can see themselves, 602 00:30:55,590 –> 00:30:58,740 and they can see their own circumstance in the data. 603 00:30:58,740 –> 00:31:03,690 In fact, I saved very little from my office 604 00:31:03,690 –> 00:31:06,300 when I moved out, but one of the things I found 605 00:31:06,300 –> 00:31:11,190 tucked away in a couple of journals 606 00:31:11,190 –> 00:31:13,980 were some letters that I had saved 607 00:31:13,980 –> 00:31:16,740 -[Jesse] Oh, wow. -That I got after the icon 608 00:31:16,740 –> 00:31:19,650 John article was published. 609 00:31:19,650 –> 00:31:23,190 And I remember, one of them said a colleague 610 00:31:23,190 –> 00:31:26,970 was sharing some responses from some of his students, 611 00:31:26,970 –> 00:31:31,530 and one of them was like, “I think you were eavesdropping 612 00:31:31,530 –> 00:31:35,700 in my teacher’s room because I’ve heard people say 613 00:31:35,700 –> 00:31:39,780 the exact same quotes that are in your paper.” 614 00:31:39,780 –> 00:31:44,780 And the other one that I got from Bob Algozzine, 615 00:31:46,770 –> 00:31:50,400 who is just an amazing special education scholar 616 00:31:50,400 –> 00:31:52,590 and has been for decades 617 00:31:52,590 –> 00:31:55,260 down at the University of North Carolina-Charlotte, 618 00:31:55,260 –> 00:31:58,380 somebody who I respect so much. 619 00:31:58,380 –> 00:32:00,240 And so it was super meaningful for me 620 00:32:00,240 –> 00:32:02,190 to get a letter from that. 621 00:32:02,190 –> 00:32:05,280 He was the editor of Exceptional Children at the time, 622 00:32:05,280 –> 00:32:10,110 and he was talking about his own feeling 623 00:32:10,110 –> 00:32:13,983 that basically, that inclusion was the way to go. 624 00:32:16,680 –> 00:32:17,850 I hope I can get this right, 625 00:32:17,850 –> 00:32:21,000 because he made an analogy about swans, 626 00:32:21,000 –> 00:32:24,980 and basically that citing a thousand white swans 627 00:32:28,500 –> 00:32:30,870 does not prove that all swans are white, 628 00:32:30,870 –> 00:32:33,030 but the citing of just one black swan 629 00:32:33,030 –> 00:32:35,760 proves that all swans aren’t white. 630 00:32:35,760 –> 00:32:38,557 And he basically was saying like your article, 631 00:32:38,557 –> 00:32:43,557 “I’ve Counted Jon”, and I should say credit 632 00:32:44,010 –> 00:32:49,010 to Ruth Dennis and Chigee Cloninger and Susan Edelman 633 00:32:49,500 –> 00:32:52,400 and Richard Schattman who were co-authors on that article, 634 00:32:54,000 –> 00:32:57,600 that our article was like a black swan, 635 00:32:57,600 –> 00:33:01,477 and it was gonna disrupt things when people said, 636 00:33:01,477 –> 00:33:03,180 “Well, kids with severe, ’cause it was about kids 637 00:33:03,180 –> 00:33:04,887 with severe disabilities.” 638 00:33:06,270 –> 00:33:07,103 People were saying, 639 00:33:07,103 –> 00:33:09,000 “Well, you can’t include kids like that.” 640 00:33:09,000 –> 00:33:12,660 You can include these kids, but not those kids. 641 00:33:12,660 –> 00:33:16,200 And he basically said, it’s gonna make it much tougher 642 00:33:16,200 –> 00:33:18,450 on people to claim that these kids 643 00:33:18,450 –> 00:33:22,200 can’t be included when they read the transformations 644 00:33:22,200 –> 00:33:25,320 of the teachers in this article.. 645 00:33:25,320 –> 00:33:30,030 And so qualitative research, I mean, 646 00:33:30,030 –> 00:33:33,000 I’ve always liked mixed methods research, 647 00:33:33,000 –> 00:33:36,390 but qualitative research, I think when done well, 648 00:33:36,390 –> 00:33:39,750 can be super powerful in telling the story 649 00:33:39,750 –> 00:33:44,010 and communicating to people in a way that sometimes 650 00:33:44,010 –> 00:33:48,480 when the statistics are really complicated, 651 00:33:48,480 –> 00:33:51,480 it’s like, you and I have had this conversation many times. 652 00:33:51,480 –> 00:33:53,160 -Yes. -Cause you know. 653 00:33:53,160 –> 00:33:56,010 You’re much more skilled at statistics than I am. 654 00:33:56,010 –> 00:33:59,199 And I’ll be like, Jesse, you gotta explain this to me. 655 00:33:59,199 –> 00:34:01,770 I can’t write about this stuff 656 00:34:01,770 –> 00:34:03,960 and we gotta translate this into lang, 657 00:34:03,960 –> 00:34:05,760 we can put the statistics in, 658 00:34:05,760 –> 00:34:07,200 but we’ve gotta put this in language 659 00:34:07,200 –> 00:34:09,870 that a teacher can understand and relate to. 660 00:34:09,870 –> 00:34:11,210 Well, yeah, I mean, part of it is explaining it. 661 00:34:11,210 –> 00:34:15,900 Part of it, it is the marriage of both the quantitative 662 00:34:15,900 –> 00:34:17,760 and the qualitative, because again, 663 00:34:17,760 –> 00:34:21,450 my own background and this, I feel like, again, 664 00:34:21,450 –> 00:34:23,343 is also sort of values that I got from you 665 00:34:23,343 –> 00:34:25,200 that were just so helpful to me, 666 00:34:25,200 –> 00:34:27,510 is that having exactly the right statistical test 667 00:34:27,510 –> 00:34:29,880 for the specific situation that you’re in 668 00:34:29,880 –> 00:34:34,880 is not necessarily the answer that is needed 669 00:34:35,220 –> 00:34:37,470 for any of the goals that you might have for research. 670 00:34:37,470 –> 00:34:41,700 And again, often, the sort of the the advice 671 00:34:41,700 –> 00:34:44,430 that I was getting was just sort of research publication 672 00:34:44,430 –> 00:34:48,330 for its own sake is a value as opposed to, 673 00:34:48,330 –> 00:34:50,430 no, a teacher might wanna read this 674 00:34:50,430 –> 00:34:52,440 and might see themselves in it 675 00:34:52,440 –> 00:34:56,040 and then need to understand, what did you learn? 676 00:34:56,040 –> 00:34:57,000 What came from this? 677 00:34:57,000 –> 00:34:58,170 -What should I do? -One of your, 678 00:34:58,170 –> 00:35:03,170 one of your other mentors who we both loved, John Bircher, 679 00:35:04,230 –> 00:35:07,290 I remember so clearly early in my career here 680 00:35:07,290 –> 00:35:08,217 at the University of Vermont. 681 00:35:08,217 –> 00:35:10,140 And of course, for those who are listening 682 00:35:10,140 –> 00:35:13,530 and don’t know John, he was a psychology professor 683 00:35:13,530 –> 00:35:15,240 on the faculty here for many years, 684 00:35:15,240 –> 00:35:17,313 along with his wife Sarah. 685 00:35:18,390 –> 00:35:20,430 And they did a lot of work around people 686 00:35:20,430 –> 00:35:22,830 with both developmental disabilities 687 00:35:22,830 –> 00:35:26,940 and people with kind of serious emotional 688 00:35:26,940 –> 00:35:30,150 behavioral issues and mental health issues. 689 00:35:30,150 –> 00:35:34,050 And he always told me that the simplest statistic 690 00:35:34,050 –> 00:35:35,790 is the most powerful. 691 00:35:35,790 –> 00:35:40,020 I mean, literally, as simple as numbers and percentages. 692 00:35:40,020 –> 00:35:42,930 And I think that that’s true. 693 00:35:42,930 –> 00:35:46,020 To go from sort of like the most traditional roots 694 00:35:46,020 –> 00:35:47,940 of sort of behaviorist principles, 695 00:35:47,940 –> 00:35:50,490 which people say are kind of stripping away 696 00:35:50,490 –> 00:35:55,490 all humanity of, whether it’s in teaching 697 00:35:55,823 –> 00:35:57,840 or in clinical psych, which is my background. 698 00:35:57,840 –> 00:36:01,410 Both of you took that to like what are the tools 699 00:36:01,410 –> 00:36:03,420 from those sort of quantitative 700 00:36:03,420 –> 00:36:04,530 and whether it’s a single case 701 00:36:04,530 –> 00:36:07,623 or multiple folks for communication. 702 00:36:08,868 –> 00:36:11,640 And I can picture of the graphs that I created with you 703 00:36:11,640 –> 00:36:13,500 and the graphs that I created with John. 704 00:36:13,500 –> 00:36:15,990 And it was really just to communicate the things 705 00:36:15,990 –> 00:36:18,930 that are happening that you need to pay attention to. 706 00:36:18,930 –> 00:36:19,950 -Yeah. -But it’s not 707 00:36:19,950 –> 00:36:21,270 the whole story. 708 00:36:21,270 –> 00:36:23,220 The real story is what does this person 709 00:36:23,220 –> 00:36:24,390 want out of their life? 710 00:36:24,390 –> 00:36:26,490 There was a guy who was a part of the faculty 711 00:36:26,490 –> 00:36:31,140 that was working during the first summer program. 712 00:36:31,140 –> 00:36:33,750 His name is Michael Friedel. 713 00:36:33,750 –> 00:36:36,210 And he told me that he had 714 00:36:36,210 –> 00:36:39,300 some of the same kind of concerns. 715 00:36:39,300 –> 00:36:42,150 And he said that one of the ways that he was able 716 00:36:42,150 –> 00:36:45,300 to understand it better for himself 717 00:36:45,300 –> 00:36:48,540 was to think of these behavioral approaches 718 00:36:48,540 –> 00:36:52,650 as humanistic empiricism, 719 00:36:52,650 –> 00:36:55,683 where you were pursuing humanistic aims, 720 00:36:56,910 –> 00:36:59,580 but using empirically sound approaches, 721 00:36:59,580 –> 00:37:03,540 because like as a teacher of kids 722 00:37:03,540 –> 00:37:04,860 that had more intensive need, 723 00:37:04,860 –> 00:37:07,110 for example, I had a student 724 00:37:07,110 –> 00:37:11,550 who had really, really severe head banging behaviors. 725 00:37:11,550 –> 00:37:15,730 I mean, he would put his head through drywall. 726 00:37:17,400 –> 00:37:20,940 He had a kind of a permanent callous 727 00:37:20,940 –> 00:37:22,890 on his forehead from hitting his head. 728 00:37:22,890 –> 00:37:25,560 He was in danger of concussion 729 00:37:25,560 –> 00:37:28,470 and retinal detachment all the time. 730 00:37:28,470 –> 00:37:33,470 And trying to help him reduce that 731 00:37:34,020 –> 00:37:35,790 through positive approaches, 732 00:37:35,790 –> 00:37:39,450 positive behavioral approaches as opposed to punishments 733 00:37:39,450 –> 00:37:43,980 or negative kind of things was really important, 734 00:37:43,980 –> 00:37:45,720 really important in his life. 735 00:37:45,720 –> 00:37:50,451 And so I kind of reluctantly learned 736 00:37:50,451 –> 00:37:52,500 these behavioral approaches. 737 00:37:52,500 –> 00:37:55,770 And then I went back into my classroom in the fall, 738 00:37:55,770 –> 00:38:00,240 and I thought, well, I’ve spent all this time 739 00:38:00,240 –> 00:38:01,073 learning this stuff. 740 00:38:01,073 –> 00:38:02,550 I should try it out. 741 00:38:02,550 –> 00:38:06,210 So I wrote systematic instructional programs 742 00:38:06,210 –> 00:38:08,130 for my students’ IEP goals. 743 00:38:08,130 –> 00:38:13,130 And those kids learned more in the first two months 744 00:38:15,330 –> 00:38:17,940 than they had the whole previous year. 745 00:38:17,940 –> 00:38:21,510 And it was because we were using sound 746 00:38:21,510 –> 00:38:25,860 instructional procedures and doing database approaches, 747 00:38:25,860 –> 00:38:27,643 database decision making and so on. 748 00:38:27,643 –> 00:38:29,610 And then I was hooked. 749 00:38:29,610 –> 00:38:32,340 But when I always wanna use it 750 00:38:32,340 –> 00:38:35,370 and always when I taught the behavior analysis course, 751 00:38:35,370 –> 00:38:37,380 I think that the behavior analysis course 752 00:38:37,380 –> 00:38:42,063 that was taught here at UVM was different 753 00:38:42,960 –> 00:38:46,050 than a lot of what is taught in behavior analysis 754 00:38:46,050 –> 00:38:49,830 around the country, because the idea that behavior analysis 755 00:38:49,830 –> 00:38:54,830 has a heart is not anything that we invented here. 756 00:38:56,490 –> 00:38:59,010 I mean, it goes all the way back to Montrose Wolf, 757 00:38:59,010 –> 00:39:02,250 who was one of the key people along with folks 758 00:39:02,250 –> 00:39:05,010 like Donald Bear at the University of Kansas 759 00:39:05,010 –> 00:39:07,770 and a whole bunch of others at the University of Kansas 760 00:39:07,770 –> 00:39:10,107 back in the 1960s and ’70s. 761 00:39:10,107 –> 00:39:13,830 And he wrote an article about applied behavior analysis 762 00:39:13,830 –> 00:39:18,830 finding its heart in terms of talking about social validity. 763 00:39:19,500 –> 00:39:21,990 And that’s a classic in the field 764 00:39:21,990 –> 00:39:24,120 of applied behavior analysis. 765 00:39:24,120 –> 00:39:26,100 And you know what? 766 00:39:26,100 –> 00:39:27,420 The way we taught applied behavior 767 00:39:27,420 –> 00:39:29,220 analysis here was two ways. 768 00:39:29,220 –> 00:39:33,500 One was, there are certain negative punishment, 769 00:39:35,520 –> 00:39:37,680 response, cost, overcorrection. 770 00:39:37,680 –> 00:39:39,810 There are a whole bunch of procedures 771 00:39:39,810 –> 00:39:41,850 that we made students aware of, 772 00:39:41,850 –> 00:39:45,060 but we didn’t teach or we didn’t encourage them to use, 773 00:39:45,060 –> 00:39:48,570 because we thought that using those approaches 774 00:39:48,570 –> 00:39:51,570 would interfere with them developing 775 00:39:51,570 –> 00:39:54,150 constructive relationships with their students. 776 00:39:54,150 –> 00:39:58,290 And if you think that a positive constructive relationship 777 00:39:58,290 –> 00:40:01,950 is the basis for a safe learning environment 778 00:40:01,950 –> 00:40:03,210 and a healthy learning environment, 779 00:40:03,210 –> 00:40:04,890 you don’t wanna do things with kids 780 00:40:04,890 –> 00:40:06,810 that are gonna interfere with you 781 00:40:06,810 –> 00:40:08,610 developing that positive stuff. 782 00:40:08,610 –> 00:40:13,534 So we just said, “Yeah, these things exist.” 783 00:40:13,534 –> 00:40:15,180 They were used in the olden days. 784 00:40:15,180 –> 00:40:16,680 Some people still use them today, 785 00:40:16,680 –> 00:40:19,230 but we really don’t encourage you to use these things. 786 00:40:19,230 –> 00:40:21,690 We’re gonna stick on all the positive stuff, 787 00:40:21,690 –> 00:40:24,540 and we’re gonna talk about how we can apply 788 00:40:24,540 –> 00:40:27,330 these things in the most natural way. 789 00:40:27,330 –> 00:40:31,260 So people think, oh, ABA’s only for behavior problems, 790 00:40:31,260 –> 00:40:33,210 only for kids with autism. 791 00:40:33,210 –> 00:40:38,210 It’s only this kind of mass trial, discrete trial training. 792 00:40:38,460 –> 00:40:41,820 It’s like, no, it can be done in a very natural way, 793 00:40:41,820 –> 00:40:44,010 incorporated into the regular class. 794 00:40:44,010 –> 00:40:48,030 And in fact, I would argue that whether they label it 795 00:40:48,030 –> 00:40:51,570 as such or identify it as such, 796 00:40:51,570 –> 00:40:55,350 every parent on the planet and every teacher on the planet 797 00:40:55,350 –> 00:40:57,690 has used behavioral approaches. 798 00:40:57,690 –> 00:41:00,090 They may or may not use them systematically. 799 00:41:00,090 –> 00:41:01,860 They may or may not use them correctly. 800 00:41:01,860 –> 00:41:03,780 They may or may not label them. 801 00:41:03,780 –> 00:41:06,960 But they’ve all used modeling and queuing 802 00:41:06,960 –> 00:41:09,030 and fading supports and providing 803 00:41:09,030 –> 00:41:11,133 different types of prompts. 804 00:41:12,045 –> 00:41:13,410 -Feedback, yeah. -And feedback 805 00:41:13,410 –> 00:41:17,935 in terms of positive reinforcement or correction procedures. 806 00:41:17,935 –> 00:41:20,160 I mean, it’s just ubiquitous. 807 00:41:20,160 –> 00:41:24,030 It’s not like behavioral approaches were invented. 808 00:41:24,030 –> 00:41:27,900 They’re just really a description of what humans, 809 00:41:27,900 –> 00:41:30,000 how humans teach each other. 810 00:41:30,000 –> 00:41:33,540 And then in applied behavior analysis, often, 811 00:41:33,540 –> 00:41:38,280 you’re exaggerating those or you’re doing them 812 00:41:38,280 –> 00:41:41,190 very systematically to try to get 813 00:41:41,190 –> 00:41:42,963 a specific behavior change. 814 00:41:44,004 –> 00:41:46,980 But they can be used extremely naturally, 815 00:41:46,980 –> 00:41:50,160 and often are by parents and teachers 816 00:41:50,160 –> 00:41:53,250 without even realizing what they’re doing or naming it. 817 00:41:53,250 –> 00:41:58,200 So I worry sometimes that with people 818 00:41:58,200 –> 00:42:01,290 being attracted to ABA or repelled by it, 819 00:42:01,290 –> 00:42:04,260 that the people that are repelled by it 820 00:42:04,260 –> 00:42:08,523 are focusing on the misuses of the tools. 821 00:42:09,990 –> 00:42:14,990 The fact that it has been used in ways that harm people, 822 00:42:16,650 –> 00:42:18,210 physically or emotionally, 823 00:42:18,210 –> 00:42:23,194 it has been used to control people inappropriately. 824 00:42:23,194 –> 00:42:24,510 -And still is. -And still is. 825 00:42:24,510 –> 00:42:25,650 But it doesn’t have to be. 826 00:42:25,650 –> 00:42:28,960 There’s nothing about the tools themselves. 827 00:42:28,960 –> 00:42:33,000 that you can also use ABA procedures 828 00:42:33,000 –> 00:42:35,880 to improve someone’s communication skills 829 00:42:35,880 –> 00:42:39,813 that encourage them to be able to self-advocate, 830 00:42:41,280 –> 00:42:45,210 to open up opportunities for them in work 831 00:42:45,210 –> 00:42:47,760 and recreation and communication 832 00:42:47,760 –> 00:42:51,633 and all kinds of really positive things. 833 00:42:53,580 –> 00:42:58,580 And so I think that it’s too bad that it’s so polarizing, 834 00:42:59,160 –> 00:43:03,393 because I think if it’s looked at in a particular way, 835 00:43:04,260 –> 00:43:09,260 it’s hard to deny that these are legitimate strategies, 836 00:43:09,720 –> 00:43:14,107 but it’s how people use them and to what end they use them. 837 00:43:14,107 –> 00:43:15,960 And that’s where the heart part comes in. 838 00:43:15,960 –> 00:43:20,430 So when people think of special ed or related fields 839 00:43:20,430 –> 00:43:25,430 as only about using research-based approaches, 840 00:43:26,820 –> 00:43:30,627 everything we do is rooted in a set of values. 841 00:43:30,627 –> 00:43:35,070 And if it’s not rooted in a set of constructive values 842 00:43:35,070 –> 00:43:39,660 that really support and raise people 843 00:43:39,660 –> 00:43:44,040 with disabilities or others, 844 00:43:44,040 –> 00:43:49,040 then it’s either not very useful or it could be harmful. 845 00:43:49,320 –> 00:43:53,070 So you always gotta check the relationship 846 00:43:53,070 –> 00:43:56,670 between I think the values and the practices. 847 00:43:56,670 –> 00:43:58,140 Yeah, well, I agree with you, 848 00:43:58,140 –> 00:44:00,780 because that’s another thing that you taught me. 849 00:44:00,780 –> 00:44:04,800 So I remember when we first started working together 850 00:44:04,800 –> 00:44:09,430 on our research, and I knew about inclusion 851 00:44:10,590 –> 00:44:13,020 and trying to help students with disabilities 852 00:44:13,020 –> 00:44:16,550 and help schools keep the students with disabilities 853 00:44:16,550 –> 00:44:19,080 in the regular education classrooms. 854 00:44:19,080 –> 00:44:21,480 And the more we looked into that 855 00:44:21,480 –> 00:44:25,140 as part of the numbers we count in EVOLVE Plus, 856 00:44:25,140 –> 00:44:28,090 and the more we were sort of pulling from the national data 857 00:44:29,010 –> 00:44:32,460 and thinking about research grants, and especially, 858 00:44:32,460 –> 00:44:34,860 we looked at the Institute of Education Sciences grant. 859 00:44:34,860 –> 00:44:36,930 It was all about academics. 860 00:44:36,930 –> 00:44:40,380 Like that really has to be the end goal of everything. 861 00:44:40,380 –> 00:44:43,050 Arguably, it should be for education. 862 00:44:43,050 –> 00:44:44,470 And I remember the conversation as, 863 00:44:44,470 –> 00:44:46,620 okay, so we’re focused on inclusion, 864 00:44:46,620 –> 00:44:48,510 and they’re focused on academics, 865 00:44:48,510 –> 00:44:49,890 so that’s what we need to study. 866 00:44:49,890 –> 00:44:51,300 We need to demonstrate the students 867 00:44:51,300 –> 00:44:53,280 with higher levels of inclusion, 868 00:44:53,280 –> 00:44:56,340 or we can look at that lead to better academics. 869 00:44:56,340 –> 00:44:59,670 And I love you that you just sort of stopped everything 870 00:44:59,670 –> 00:45:02,760 and said there’s civil rights issues, 871 00:45:02,760 –> 00:45:04,740 there’s things that conflict with our values, 872 00:45:04,740 –> 00:45:06,600 and then there’s research questions. 873 00:45:06,600 –> 00:45:08,070 And so as we’re talking about behaviors 874 00:45:08,070 –> 00:45:10,440 and when we’re talking about research, 875 00:45:10,440 –> 00:45:12,330 this is one of the things I’ve taken 876 00:45:12,330 –> 00:45:17,280 is that these are tools in service of bigger- 877 00:45:17,280 –> 00:45:18,240 -Yeah, it could- -Humanistic values. 878 00:45:18,240 –> 00:45:20,490 I’m sure part of the conversation we had 879 00:45:20,490 –> 00:45:23,070 was that inclusion is not a research question. 880 00:45:23,070 –> 00:45:24,660 That was exactly what you said, yes. 881 00:45:24,660 –> 00:45:26,940 Whether or not kids get included 882 00:45:26,940 –> 00:45:28,800 is not a research question. 883 00:45:28,800 –> 00:45:31,410 An appropriate research question is around, 884 00:45:31,410 –> 00:45:34,020 in what ways can we better, 885 00:45:34,020 –> 00:45:39,020 more successfully include more kids with more diverse needs? 886 00:45:39,120 –> 00:45:43,230 But not whether or not, because they are human beings 887 00:45:43,230 –> 00:45:47,160 who deserve and have the right to the same civil rights 888 00:45:47,160 –> 00:45:49,860 and opportunities as any other person. 889 00:45:49,860 –> 00:45:53,910 So people that say, well, we’ve done this study, 890 00:45:53,910 –> 00:45:57,300 and inclusion doesn’t produce this outcome. 891 00:45:57,300 –> 00:45:59,283 Therefore, kids should be segregated. 892 00:46:00,630 –> 00:46:02,880 To me, that’s a misguided thing. 893 00:46:02,880 –> 00:46:05,730 And if you look at the law, if you look at the federal law, 894 00:46:05,730 –> 00:46:08,160 -it’s rooted in values. -Yes. 895 00:46:08,160 –> 00:46:10,050 It tries to implement those values 896 00:46:10,050 –> 00:46:13,260 by asking people to use research-based approaches, 897 00:46:13,260 –> 00:46:14,790 but it’s rooted in values. 898 00:46:14,790 –> 00:46:18,060 We’re still not following nationally 899 00:46:18,060 –> 00:46:23,060 all the values that are embedded or enshrined in the law. 900 00:46:23,070 –> 00:46:27,030 And this is evidenced by the dramatic differences 901 00:46:27,030 –> 00:46:30,363 across the country and who’s segregated and who’s included. 902 00:46:31,269 –> 00:46:35,370 And even kids that are “included”, 903 00:46:35,370 –> 00:46:36,780 we got a lot of work to do. 904 00:46:36,780 –> 00:46:38,643 I mean, it’s not pretty. 905 00:46:40,530 –> 00:46:42,513 There’s no utopias out there. 906 00:46:43,890 –> 00:46:45,983 Well, I mean, and some of the, 907 00:46:45,983 –> 00:46:47,520 I mean, they’re not utopias, 908 00:46:47,520 –> 00:46:49,770 but I think some of the examples that you’ve shown me 909 00:46:49,770 –> 00:46:51,870 over time as we’ve been working in schools, 910 00:46:51,870 –> 00:46:54,930 and you were always inclusion-oriented. 911 00:46:54,930 –> 00:46:56,283 It was aspiration. 912 00:46:57,450 –> 00:46:59,760 It always came down to it was a community 913 00:46:59,760 –> 00:47:02,070 of people trying to figure it out. 914 00:47:02,070 –> 00:47:04,380 And I think, and you can talk more about this, 915 00:47:04,380 –> 00:47:07,620 but I mean, a lot of the more recent work that you did 916 00:47:07,620 –> 00:47:10,170 was just how do schools do that, 917 00:47:10,170 –> 00:47:12,810 given the environments that they’re in? 918 00:47:12,810 –> 00:47:14,691 So the resources that they have 919 00:47:14,691 –> 00:47:16,137 and the pressures that they’re under and- 920 00:47:16,137 –> 00:47:17,910 And they’re under a lot of pressures. 921 00:47:17,910 –> 00:47:22,530 I mean, I think that what schools are being asked to do 922 00:47:22,530 –> 00:47:26,370 and what teachers and administrators do, frankly, 923 00:47:26,370 –> 00:47:28,590 I think it’s harder today than it was 924 00:47:28,590 –> 00:47:31,920 when I was a teacher and an administrator, because frankly, 925 00:47:31,920 –> 00:47:34,170 when I was a teacher, a special ed teacher, 926 00:47:34,170 –> 00:47:36,480 -it was like the wild west. -Sure. 927 00:47:36,480 –> 00:47:41,480 As long as like nobody was getting seriously damaged, 928 00:47:41,760 –> 00:47:44,760 just do whatever you’re doing with those kids. 929 00:47:44,760 –> 00:47:46,683 Nobody’s complaining, we’re happy. 930 00:47:48,450 –> 00:47:51,633 The expectations were so low. 931 00:47:52,680 –> 00:47:55,366 And of course part of that changed nationally 932 00:47:55,366 –> 00:48:00,270 with the reauthorization, 933 00:48:00,270 –> 00:48:03,000 I think it was the ’97 reauthorization of IDEA, 934 00:48:03,000 –> 00:48:05,850 where they put in the requirement for access 935 00:48:05,850 –> 00:48:07,740 to the general ed curriculum, 936 00:48:07,740 –> 00:48:09,930 because so many kids with disabilities 937 00:48:09,930 –> 00:48:11,580 were not getting access. 938 00:48:11,580 –> 00:48:14,553 They’re still not, in many cases. 939 00:48:15,630 –> 00:48:20,373 So yeah, it’s changed so much over the years. 940 00:48:22,110 –> 00:48:24,210 I mean, I don’t think I’ve ever heard you say 941 00:48:24,210 –> 00:48:26,160 exactly that phrase, but I’m not surprised. 942 00:48:26,160 –> 00:48:28,260 -Which phrase? -Well, just that it’s 943 00:48:28,260 –> 00:48:29,807 harder today to work in a school. 944 00:48:29,807 –> 00:48:32,760 That’s just my speculation is, 945 00:48:32,760 –> 00:48:36,660 ’cause even though I haven’t been a classroom teacher 946 00:48:36,660 –> 00:48:40,800 or a direct service provider or administrator 947 00:48:40,800 –> 00:48:45,800 in a very long time, all of our research was in schools, 948 00:48:46,620 –> 00:48:51,240 and interacting with teachers and administrators 949 00:48:51,240 –> 00:48:54,780 and families and just seeing what’s happening. 950 00:48:54,780 –> 00:48:58,350 And this leads to, you had mentioned earlier 951 00:48:58,350 –> 00:49:00,870 of the phrase precarious or purposeful. 952 00:49:00,870 –> 00:49:03,220 It’s one of the things that sent me on 953 00:49:04,140 –> 00:49:09,140 along with you on a path to look at service delivery issues, 954 00:49:09,210 –> 00:49:12,993 because what I kept thinking to myself was, 955 00:49:14,370 –> 00:49:17,790 I wonder if I could have been a successful 956 00:49:17,790 –> 00:49:21,630 special ed teacher under these conditions, 957 00:49:21,630 –> 00:49:26,630 because I would like to think that I was a successful 958 00:49:26,700 –> 00:49:30,810 special ed teacher in terms of my kids learning some things 959 00:49:30,810 –> 00:49:33,450 and working with parents and so on. 960 00:49:33,450 –> 00:49:38,450 But you always think, I wish I knew then what I know now 961 00:49:38,730 –> 00:49:41,130 and like all the missed opportunities 962 00:49:41,130 –> 00:49:44,340 to teach kids certain things or to do certain things. 963 00:49:44,340 –> 00:49:46,200 Those kind of haunt you. 964 00:49:46,200 –> 00:49:51,200 But when I would see a teacher with a caseload of 18 kids 965 00:49:55,050 –> 00:49:58,110 and supervising five paraprofessionals 966 00:49:58,110 –> 00:50:02,160 and working across five grade levels 967 00:50:02,160 –> 00:50:05,670 with a dozen different teachers. 968 00:50:05,670 –> 00:50:10,590 And I think it’s impossible. 969 00:50:10,590 –> 00:50:12,870 How can they do this work? 970 00:50:12,870 –> 00:50:17,520 And we have a huge turnover burnout problem in special ed. 971 00:50:17,520 –> 00:50:19,066 -And there’s your answer. -Yeah. 972 00:50:19,066 –> 00:50:21,570 -A lot of ’em can’t. -Yeah, a lot of ’em can’t. 973 00:50:21,570 –> 00:50:25,710 And so you know, ’cause you were part of this work. 974 00:50:25,710 –> 00:50:29,910 Part of our work on service delivery 975 00:50:29,910 –> 00:50:33,840 was rooted in the idea that you can have the best staff, 976 00:50:33,840 –> 00:50:36,210 you can have people that are really skilled 977 00:50:36,210 –> 00:50:38,943 and have great values and working really hard, 978 00:50:40,380 –> 00:50:44,310 and they might have good instructional approaches 979 00:50:44,310 –> 00:50:46,440 and even in sound curriculum. 980 00:50:46,440 –> 00:50:49,830 But if they don’t have a service delivery model 981 00:50:49,830 –> 00:50:53,460 in which to work that is conducive to them 982 00:50:53,460 –> 00:50:56,670 using those skills and implementing those values, 983 00:50:56,670 –> 00:50:58,530 realizing those values, 984 00:50:58,530 –> 00:51:00,900 it kind of is all for naught. 985 00:51:00,900 –> 00:51:04,800 But all of the federal funding is about curriculum 986 00:51:04,800 –> 00:51:06,480 and instruction and behavior support. 987 00:51:06,480 –> 00:51:09,480 And almost nothing on service delivery. 988 00:51:09,480 –> 00:51:11,640 And to me, that’s kind of the third leg of the stool 989 00:51:11,640 –> 00:51:14,370 that people aren’t paying attention to. 990 00:51:14,370 –> 00:51:17,193 The Precarious or Purposeful, as you know, is based on, 991 00:51:18,418 –> 00:51:20,700 we’ve got a cartoon that’s in that article 992 00:51:20,700 –> 00:51:25,200 that’s in the journal inclusion that shows a house, 993 00:51:25,200 –> 00:51:29,550 and it’s precariously on the edge of a cliff, 994 00:51:29,550 –> 00:51:31,050 overhanging cliff. 995 00:51:31,050 –> 00:51:32,640 And there’s a big rope around it. 996 00:51:32,640 –> 00:51:35,568 It’s being held back from falling over the cliff 997 00:51:35,568 –> 00:51:38,490 by an army of paraprofessionals. 998 00:51:38,490 –> 00:51:42,595 And it asks On The Brink, 999 00:51:42,595 –> 00:51:43,710 do you know On The Brink? 1000 00:51:43,710 –> 00:51:48,060 And problems with service delivery models, 1001 00:51:48,060 –> 00:51:51,180 because every year it seems like the pressures 1002 00:51:51,180 –> 00:51:54,750 that schools are under financially and otherwise, 1003 00:51:54,750 –> 00:51:57,330 they try to get as close to the edge 1004 00:51:57,330 –> 00:52:02,220 as they can financially and resource-wise. 1005 00:52:02,220 –> 00:52:07,020 And then any little thing pushes it over the edge, 1006 00:52:07,020 –> 00:52:09,600 and it’s like, this is not where you wanna live. 1007 00:52:09,600 –> 00:52:11,160 You gotta live back here. 1008 00:52:11,160 –> 00:52:14,277 How do we create models that live back here, 1009 00:52:14,277 –> 00:52:16,683 and we move within a reasonable range. 1010 00:52:17,580 –> 00:52:20,880 And that means reducing caseload sizes, 1011 00:52:20,880 –> 00:52:24,519 reducing the number of grade levels 1012 00:52:24,519 –> 00:52:27,300 that special educators are working in, 1013 00:52:27,300 –> 00:52:30,240 reducing the number of different teachers. 1014 00:52:30,240 –> 00:52:33,930 So as you know, we took existing data 1015 00:52:33,930 –> 00:52:38,400 from 69 Vermont schools and looked at how that could be 1016 00:52:38,400 –> 00:52:41,583 reimagined, reconfigured so that it was real. 1017 00:52:42,538 –> 00:52:43,510 No new money. 1018 00:52:43,510 –> 00:52:45,173 No new money. 1019 00:52:46,680 –> 00:52:50,040 Turns out, you can have models of service delivery 1020 00:52:50,040 –> 00:52:54,420 if you’re proactive, where you’ve got one special educator 1021 00:52:54,420 –> 00:52:56,370 for every three or four teachers, 1022 00:52:56,370 –> 00:52:58,170 hopefully all at the same grade level, 1023 00:52:58,170 –> 00:53:00,360 or at least continuous grade levels. 1024 00:53:00,360 –> 00:53:04,410 Now, you’ve reduced the amount of curricular content 1025 00:53:04,410 –> 00:53:07,590 that the special educator needs to be thinking about 1026 00:53:07,590 –> 00:53:10,920 and responsible to support with the teachers 1027 00:53:10,920 –> 00:53:13,350 and reducing the number of teachers, 1028 00:53:13,350 –> 00:53:15,580 which changes the communication 1029 00:53:17,520 –> 00:53:19,830 and embedding them in those environments. 1030 00:53:19,830 –> 00:53:24,830 And that you can do that by reallocating resources. 1031 00:53:25,710 –> 00:53:29,492 Vermont of course has historically been extremely heavy 1032 00:53:29,492 –> 00:53:32,820 on the use of paraprofessionals. 1033 00:53:32,820 –> 00:53:35,490 And if you trade some of those positions, 1034 00:53:35,490 –> 00:53:37,770 then you’re gonna have fewer people, 1035 00:53:37,770 –> 00:53:40,680 but you’re gonna have more highly skilled people. 1036 00:53:40,680 –> 00:53:42,870 And that’s nothing against the paraprofessionals. 1037 00:53:42,870 –> 00:53:46,343 I mean, they’re a very important part 1038 00:53:46,343 –> 00:53:47,610 of the school community. 1039 00:53:47,610 –> 00:53:52,020 They work really hard, but it’s not fair to them, 1040 00:53:52,020 –> 00:53:53,760 and it’s not fair to students 1041 00:53:53,760 –> 00:53:56,223 to treat them as if they are teachers. 1042 00:53:57,270 –> 00:54:00,990 They don’t get compensated to function as teachers. 1043 00:54:00,990 –> 00:54:02,850 They’re not trained most of the time. 1044 00:54:02,850 –> 00:54:05,190 There are occasionally certified teachers 1045 00:54:05,190 –> 00:54:06,780 working as paraprofessionals. 1046 00:54:06,780 –> 00:54:08,283 But you can’t count on that. 1047 00:54:09,253 –> 00:54:11,340 And what people fail to realize is that 1048 00:54:11,340 –> 00:54:15,180 it’s an equity issue for kids with disabilities. 1049 00:54:15,180 –> 00:54:17,310 If you don’t have a disability, 1050 00:54:17,310 –> 00:54:19,980 you get all of your instruction 1051 00:54:19,980 –> 00:54:24,980 from a highly qualified, certified licensed teacher. 1052 00:54:25,320 –> 00:54:27,930 If you have a mild disability, 1053 00:54:27,930 –> 00:54:29,880 if you have a specific learning disability, 1054 00:54:29,880 –> 00:54:32,880 speech language impairment, high functioning autism, 1055 00:54:32,880 –> 00:54:35,910 you are pretty likely to get the vast majority 1056 00:54:35,910 –> 00:54:39,000 of your instruction from a highly qualified 1057 00:54:39,000 –> 00:54:41,430 teacher and/or special educator. 1058 00:54:41,430 –> 00:54:42,840 A combination. 1059 00:54:42,840 –> 00:54:44,880 If you have a lower incidence disability, 1060 00:54:44,880 –> 00:54:46,760 if you have an intellectual disability, 1061 00:54:46,760 –> 00:54:51,210 if you have severe physical and either sensory 1062 00:54:51,210 –> 00:54:53,280 or intellectual disability in combination, 1063 00:54:53,280 –> 00:54:55,770 any kind of developmental disability, 1064 00:54:55,770 –> 00:54:58,890 you are very likely to get a very high percentage 1065 00:54:58,890 –> 00:55:02,190 of your education from a paraprofessional 1066 00:55:02,190 –> 00:55:05,940 who not only is not as skilled or trained as the teachers, 1067 00:55:05,940 –> 00:55:08,523 but is substantively unsupervised. 1068 00:55:09,990 –> 00:55:11,370 And that’s based on the data. 1069 00:55:11,370 –> 00:55:14,550 And multiple studies demonstrate that. 1070 00:55:14,550 –> 00:55:18,390 And what people don’t seem to recognize 1071 00:55:18,390 –> 00:55:22,140 is that is a fundamental equity problem 1072 00:55:22,140 –> 00:55:24,367 for people with disabilities, 1073 00:55:24,367 –> 00:55:28,980 ’cause the mentality that undergirds that is, 1074 00:55:28,980 –> 00:55:32,640 do they really need a highly qualified person? 1075 00:55:32,640 –> 00:55:35,670 Isn’t it okay if they just have like a nice mom or dad 1076 00:55:35,670 –> 00:55:39,603 who is willing to work for close to minimum wage? 1077 00:55:41,010 –> 00:55:42,840 Well, because that’s not, 1078 00:55:42,840 –> 00:55:45,270 I think for most, that’s not even how it’s understood. 1079 00:55:45,270 –> 00:55:46,620 The way they’re thinking about is, 1080 00:55:46,620 –> 00:55:50,190 well, we all have access to the teacher in the school, 1081 00:55:50,190 –> 00:55:53,040 and you’re also getting the support. 1082 00:55:53,040 –> 00:55:54,270 But that’s what the data showed us. 1083 00:55:54,270 –> 00:55:55,230 That’s not what’s happening. 1084 00:55:55,230 –> 00:55:56,063 That’s not what, yeah, 1085 00:55:56,063 –> 00:55:57,450 that’s not what the data shows 1086 00:55:57,450 –> 00:55:59,800 for kids with developmental disabilities, yeah. 1087 00:56:01,755 –> 00:56:04,020 We have some students who are getting 1088 00:56:04,020 –> 00:56:08,490 80 plus percent of their instruction from paraprofessionals 1089 00:56:08,490 –> 00:56:11,013 and they’re not seeing teachers hardly at all. 1090 00:56:12,060 –> 00:56:14,610 They’re getting their first instruction, 1091 00:56:14,610 –> 00:56:16,200 not just supplemental instruction. 1092 00:56:16,200 –> 00:56:17,520 They’re getting their first instruction 1093 00:56:17,520 –> 00:56:19,920 from paraprofessionals. 1094 00:56:19,920 –> 00:56:21,630 And again, this is not a knock 1095 00:56:21,630 –> 00:56:23,940 on the paraprofessionals at all. 1096 00:56:23,940 –> 00:56:26,458 They’re being put in a very difficult situation. 1097 00:56:26,458 –> 00:56:28,470 -Yeah. -And parents are being told, 1098 00:56:28,470 –> 00:56:30,063 we’re doing you a favor. 1099 00:56:31,650 –> 00:56:32,850 And that’s one of the other things 1100 00:56:32,850 –> 00:56:36,150 that’s really interesting over time, and it’s just emerging. 1101 00:56:36,150 –> 00:56:39,060 But it used to be parents always fighting, 1102 00:56:39,060 –> 00:56:41,860 for I want my kid to have a one-to-one paraprofessional. 1103 00:56:43,140 –> 00:56:45,840 I think some of the most knowledgeable 1104 00:56:45,840 –> 00:56:49,560 and advocacy-oriented parents have realized 1105 00:56:49,560 –> 00:56:51,450 that that’s not the panacea 1106 00:56:51,450 –> 00:56:53,610 to have an adult attached to the hip, 1107 00:56:53,610 –> 00:56:55,623 an untrained adult attached to the hip, 1108 00:56:57,630 –> 00:57:00,363 or a lesser trained person attached to the hip. 1109 00:57:01,560 –> 00:57:05,640 They want their kid to have access to a highly qualified 1110 00:57:05,640 –> 00:57:08,733 teacher and special educator and other service providers. 1111 00:57:10,650 –> 00:57:11,700 Yeah, well, yeah. 1112 00:57:11,700 –> 00:57:14,170 I mean, so much of this work 1113 00:57:16,320 –> 00:57:19,890 points to just how difficult parents and families have 1114 00:57:19,890 –> 00:57:22,590 with what they end up needing to advocate for. 1115 00:57:22,590 –> 00:57:26,280 I mean, if you were talking about programs that still do 1116 00:57:26,280 –> 00:57:31,170 punitive and behavioral discipline and electric shock, 1117 00:57:31,170 –> 00:57:33,330 those programs are held in place by parents 1118 00:57:33,330 –> 00:57:35,310 who feel like they have no other option. 1119 00:57:35,310 –> 00:57:37,830 So it’s not that they’re thinking 1120 00:57:37,830 –> 00:57:38,820 that this is what they want, 1121 00:57:38,820 –> 00:57:41,040 but if they’re not presented with a service 1122 00:57:41,040 –> 00:57:43,590 delivery model that is healthy, 1123 00:57:43,590 –> 00:57:47,280 and sort of promotes those constructive relationships 1124 00:57:47,280 –> 00:57:48,750 that you say are sort of at the cornerstone 1125 00:57:48,750 –> 00:57:53,100 of academic achievement and social behavioral success, 1126 00:57:53,100 –> 00:57:56,040 then they’re gonna go with what somebody’s saying 1127 00:57:56,040 –> 00:57:58,530 is a solution if the school’s not offering one. 1128 00:57:58,530 –> 00:58:01,143 And a lot of times, in the regular schools, 1129 00:58:02,640 –> 00:58:06,030 because the parents, and this is what parents have told me, 1130 00:58:06,030 –> 00:58:08,940 many parents have told me they’re worried 1131 00:58:08,940 –> 00:58:11,370 that their child will fall through the cracks, 1132 00:58:11,370 –> 00:58:13,020 Or that they won’t get what they need 1133 00:58:13,020 –> 00:58:14,340 from the regular ed system 1134 00:58:14,340 –> 00:58:17,333 because the service delivery model is not in place. 1135 00:58:17,333 –> 00:58:18,166 Yeah, they see it happen. 1136 00:58:18,166 –> 00:58:22,710 And so they want the kind of security blanket 1137 00:58:22,710 –> 00:58:27,510 of that one-to-one paraprofessional as kind of, 1138 00:58:27,510 –> 00:58:29,010 this is somebody who’s gonna be watching out 1139 00:58:29,010 –> 00:58:30,420 for my kid all the time. 1140 00:58:30,420 –> 00:58:33,150 So it’s very understandable. 1141 00:58:33,150 –> 00:58:38,150 But to me, it’s a symptom of a systemic problem 1142 00:58:39,270 –> 00:58:42,930 that a set of systemic problems that we need to address. 1143 00:58:42,930 –> 00:58:46,170 And that’s why like the work that you and I have done 1144 00:58:46,170 –> 00:58:49,380 in the last particularly say 10 years, 1145 00:58:49,380 –> 00:58:53,220 has really been focused on trying to encourage people 1146 00:58:53,220 –> 00:58:58,220 to look at inclusive systems of service delivery 1147 00:58:58,260 –> 00:59:02,560 that are less reliant on care professionals 1148 00:59:03,630 –> 00:59:07,740 and that really are there to support teachers 1149 00:59:07,740 –> 00:59:11,820 and students with disabilities because special educators 1150 00:59:11,820 –> 00:59:13,893 and others aren’t there all the time. 1151 00:59:17,970 –> 00:59:19,350 I’ve got so many other questions, 1152 00:59:19,350 –> 00:59:21,300 and you gave such a good description 1153 00:59:21,300 –> 00:59:23,160 of one of your cartoons, 1154 00:59:23,160 –> 00:59:26,850 so that feels like too good a segue to let go. 1155 00:59:26,850 –> 00:59:29,160 So why cartoons? 1156 00:59:29,160 –> 00:59:30,810 How did you get into that? 1157 00:59:30,810 –> 00:59:32,400 We’ve been talking a lot about communication. 1158 00:59:32,400 –> 00:59:35,250 That’s obviously a very different communication strategy. 1159 00:59:36,523 –> 00:59:38,270 A lot of people love cartoons. 1160 00:59:38,270 –> 00:59:40,830 And some of the most popular cartoonists 1161 00:59:40,830 –> 00:59:42,090 at that time were people 1162 00:59:42,090 –> 00:59:44,370 like Gary Larson, “Far Side” cartoons. 1163 00:59:44,370 –> 00:59:45,930 -Yep. -And so I would always 1164 00:59:45,930 –> 00:59:46,830 -look through. -We’re really 1165 00:59:46,830 –> 00:59:48,090 dating ourselves right now. 1166 00:59:48,090 –> 00:59:48,923 So other people are gonna have to Google- 1167 00:59:48,923 –> 00:59:50,820 Google who Gary Larson is, yeah. 1168 00:59:50,820 –> 00:59:52,533 He was a famous cartoonist, 1169 00:59:54,180 –> 00:59:56,040 had a whole “Far Side” series, 1170 00:59:56,040 –> 00:59:59,760 but I would go through his books and calendars, 1171 00:59:59,760 –> 01:00:02,160 and I try to find things that were related 1172 01:00:02,160 –> 01:00:06,960 and they were funny, very creative, and excellent. 1173 01:00:06,960 –> 01:00:09,240 And they were kind of tangentially related, 1174 01:00:09,240 –> 01:00:11,691 but they were not like spot on. 1175 01:00:11,691 –> 01:00:16,691 And interestingly, there were education cartoons back then, 1176 01:00:20,370 –> 01:00:25,370 but many of the education cartoons made fun of students 1177 01:00:25,740 –> 01:00:27,960 and they made fun of parents, 1178 01:00:27,960 –> 01:00:29,523 or they made fun of teachers. 1179 01:00:31,140 –> 01:00:35,340 But mostly, they made fun of kids and parents. 1180 01:00:35,340 –> 01:00:37,110 And I didn’t wanna do that. 1181 01:00:37,110 –> 01:00:39,480 I kind of did wanna make fun of us. 1182 01:00:39,480 –> 01:00:40,560 Sure. 1183 01:00:40,560 –> 01:00:44,550 Because I think of all of the ridiculous things 1184 01:00:44,550 –> 01:00:45,990 that I’ve done in my own career, 1185 01:00:45,990 –> 01:00:48,000 and that I’ve seen well-intended 1186 01:00:48,000 –> 01:00:49,890 colleagues do in their careers. 1187 01:00:49,890 –> 01:00:54,360 And so my cartoon series is subtitled. 1188 01:00:54,360 –> 01:00:58,080 It’s Absurdities & Realities of Special Education. 1189 01:00:58,080 –> 01:01:01,410 And I did wanna poke fun at the things 1190 01:01:01,410 –> 01:01:03,090 that we as professionals do, 1191 01:01:03,090 –> 01:01:05,640 kind of hold a mirror up to ourselves. 1192 01:01:05,640 –> 01:01:09,120 So at one point I started to have these ideas, 1193 01:01:09,120 –> 01:01:10,520 and I started to write down, 1194 01:01:11,790 –> 01:01:13,500 I started to draw out cartoons 1195 01:01:13,500 –> 01:01:16,113 and the text and the images. 1196 01:01:17,460 –> 01:01:21,060 But as you know, I can’t draw to save my life. 1197 01:01:21,060 –> 01:01:23,823 So my cartoons did not look very good. 1198 01:01:24,870 –> 01:01:29,870 And luckily, I was already friends with an amazing artist, 1199 01:01:30,120 –> 01:01:33,630 Kevin Ruelle, who does all different kinds of art. 1200 01:01:33,630 –> 01:01:38,430 He agreed to work with me and he redrew my cartoons. 1201 01:01:38,430 –> 01:01:41,100 And you mentioned about communication before. 1202 01:01:41,100 –> 01:01:43,410 Most people don’t journal articles. 1203 01:01:43,410 –> 01:01:45,600 I mean, a lot of professionals, 1204 01:01:45,600 –> 01:01:47,010 if they’re not in graduate school, 1205 01:01:47,010 –> 01:01:48,780 if they’re not in a master’s program 1206 01:01:48,780 –> 01:01:53,280 or some other graduate program, they’re not like, 1207 01:01:53,280 –> 01:01:56,310 of course reading tons of literature, 1208 01:01:56,310 –> 01:01:59,223 where you’re publishing your stuff, but cartoons, 1209 01:02:00,570 –> 01:02:03,840 people will look at those and they’ll also remember them. 1210 01:02:03,840 –> 01:02:07,290 They remember the image even if they, 1211 01:02:07,290 –> 01:02:11,610 and the meaning even if they don’t remember 1212 01:02:11,610 –> 01:02:13,053 an article that they read. 1213 01:02:14,040 –> 01:02:16,443 So it was another way. 1214 01:02:17,310 –> 01:02:19,440 I always tried to have three or four 1215 01:02:19,440 –> 01:02:22,950 or more different ways to communicate the same thing. 1216 01:02:22,950 –> 01:02:25,320 So we’d have a research study, 1217 01:02:25,320 –> 01:02:29,160 then we’d have what we back in the day 1218 01:02:29,160 –> 01:02:30,990 called the Quick Guides to Inclusion, 1219 01:02:30,990 –> 01:02:34,020 which was a very non-researchy 1220 01:02:34,020 –> 01:02:36,960 teacher-friendly way of having like, 1221 01:02:36,960 –> 01:02:38,520 here’s the 10 most important things 1222 01:02:38,520 –> 01:02:40,590 we want you to know about this topic. 1223 01:02:40,590 –> 01:02:42,187 And then for each one of the 10 things, 1224 01:02:42,187 –> 01:02:45,060 there was one page of text, 1225 01:02:45,060 –> 01:02:48,458 and it was purposely not researchy, 1226 01:02:48,458 –> 01:02:51,213 it was purposely like talking teacher to teacher. 1227 01:02:53,040 –> 01:02:57,030 Our research quick guides, cartoons on the same topic. 1228 01:02:57,030 –> 01:03:00,750 So all the cartoons are either based on research findings, 1229 01:03:00,750 –> 01:03:03,900 or topical issues in the field of education, 1230 01:03:03,900 –> 01:03:05,760 special education. 1231 01:03:05,760 –> 01:03:09,270 And so it was a way to communicate. 1232 01:03:09,270 –> 01:03:10,560 And it was a lot of fun too. 1233 01:03:10,560 –> 01:03:14,670 I mean, it was really fun working with Kevin. 1234 01:03:14,670 –> 01:03:17,340 And it was fun going from my office 1235 01:03:17,340 –> 01:03:19,207 to colleagues offices and say, 1236 01:03:19,207 –> 01:03:22,446 “Look at this one, what do you think of this one?” 1237 01:03:22,446 –> 01:03:24,535 And they’d be like, “Not so good.” 1238 01:03:24,535 –> 01:03:27,030 Oh, that’s good, that’s good. 1239 01:03:27,030 –> 01:03:28,503 They vetted me. 1240 01:03:29,730 –> 01:03:31,080 It must have been so much fun. 1241 01:03:31,080 –> 01:03:33,180 It was a lot of fun. 1242 01:03:33,180 –> 01:03:37,413 And once they were done, nobody wanted to publish ’em. 1243 01:03:38,340 –> 01:03:39,660 Publishers were afraid of them 1244 01:03:39,660 –> 01:03:42,143 or didn’t know what to do with them. 1245 01:03:42,143 –> 01:03:46,230 They were worried that they would think 1246 01:03:46,230 –> 01:03:51,230 that their publication house was unscholarly, 1247 01:03:51,420 –> 01:03:54,172 or that I was unscholarly. 1248 01:03:54,172 –> 01:03:57,120 And so they were worried from like an image perspective. 1249 01:03:57,120 –> 01:04:00,573 Will people be offended by these cartoons? 1250 01:04:01,652 –> 01:04:03,480 I kind of hope that some people would be offended, 1251 01:04:03,480 –> 01:04:05,340 and some of people were. 1252 01:04:05,340 –> 01:04:08,370 Some of them are a little biting. 1253 01:04:08,370 –> 01:04:10,320 Some of them are funny, some of ’em are a little, 1254 01:04:10,320 –> 01:04:11,760 they’re all satirical. 1255 01:04:11,760 –> 01:04:16,263 Some of them are just absolutely 100% truth. 1256 01:04:17,220 –> 01:04:19,770 Like with no creativity on my part at all. 1257 01:04:19,770 –> 01:04:22,380 In fact, the one cartoon that’s probably 1258 01:04:22,380 –> 01:04:27,330 the most well known, and it is certainly the most reprinted, 1259 01:04:27,330 –> 01:04:32,330 is the one where it shows an image of a bunch of kids 1260 01:04:32,910 –> 01:04:35,400 showing up at school on the snowy day 1261 01:04:35,400 –> 01:04:39,270 and the school custodian is outside shoveling the stairs. 1262 01:04:39,270 –> 01:04:41,760 And a student who uses a wheelchair for mobility 1263 01:04:41,760 –> 01:04:45,810 is waiting to have the ramp shoveled. 1264 01:04:45,810 –> 01:04:50,567 And while the custodian is shoveling the stairs, 1265 01:04:51,540 –> 01:04:55,860 the student asks him if he would shovel the ramp. 1266 01:04:55,860 –> 01:04:57,660 And he says back to the student, 1267 01:04:57,660 –> 01:05:00,660 well, basically, when I’m done doing the stairs, 1268 01:05:00,660 –> 01:05:02,884 then I’ll do the ramp for you. 1269 01:05:02,884 –> 01:05:05,010 And the student says back to the custodian, 1270 01:05:05,010 –> 01:05:08,606 but if you shovel the ramp first, we can all get in. 1271 01:05:08,606 –> 01:05:13,173 And it’s like clearing a path for everyone. 1272 01:05:14,280 –> 01:05:15,357 That’s the moral of it. 1273 01:05:15,357 –> 01:05:18,393 And that was not my brainchild. 1274 01:05:19,410 –> 01:05:21,330 Pretty much the only credit I can take 1275 01:05:21,330 –> 01:05:23,730 is putting it into the form of a cartoon, 1276 01:05:23,730 –> 01:05:27,750 because that story was actually, 1277 01:05:27,750 –> 01:05:32,750 came from a student with disabilities in Vermont 1278 01:05:32,910 –> 01:05:37,770 and was part of a report that our dear colleague, 1279 01:05:37,770 –> 01:05:42,030 Deborah Lisi-Baker, had included in a report 1280 01:05:42,030 –> 01:05:44,820 that was produced here at the center. 1281 01:05:44,820 –> 01:05:48,870 And I saw that story and I asked her, 1282 01:05:48,870 –> 01:05:51,030 could she get me in contact with the student, 1283 01:05:51,030 –> 01:05:54,120 ’cause I’d like to make a cartoon about this. 1284 01:05:54,120 –> 01:05:56,010 She got in touch with the student. 1285 01:05:56,010 –> 01:05:59,400 The student said, “Yes, you could make a cartoon about it, 1286 01:05:59,400 –> 01:06:01,590 but I didn’t wanna be named.” 1287 01:06:01,590 –> 01:06:03,510 So I still don’t know to this day 1288 01:06:03,510 –> 01:06:05,544 -who the student was. -[Jesse] Oh, wow. 1289 01:06:05,544 –> 01:06:08,983 But I know that there is a student out 1290 01:06:08,983 –> 01:06:12,220 who’s certainly an adult at this point of time 1291 01:06:14,070 –> 01:06:16,140 who is responsible for that story. 1292 01:06:16,140 –> 01:06:17,887 And it says on the side of the cartoon, 1293 01:06:17,887 –> 01:06:20,247 “Inspired by a student with disabilities.” 1294 01:06:21,810 –> 01:06:25,943 So a few of them are absolutely like not made up at all. 1295 01:06:25,943 –> 01:06:28,473 They’re just depictions of reality. 1296 01:06:29,640 –> 01:06:30,990 Yeah, I’m smiling at them. 1297 01:06:30,990 –> 01:06:32,700 It’s literally right over your shoulder. 1298 01:06:32,700 –> 01:06:34,380 Oh, I didn’t know it was behind me. 1299 01:06:34,380 –> 01:06:36,203 I was gonna help you with that if you need it. 1300 01:06:39,180 –> 01:06:40,230 I don’t think there’s any debate, 1301 01:06:40,230 –> 01:06:42,270 but it’s probably one of the most recognizable things 1302 01:06:42,270 –> 01:06:43,890 that our center’s ever produced. 1303 01:06:43,890 –> 01:06:45,870 I mean, I see it everywhere, 1304 01:06:45,870 –> 01:06:47,700 certainly around campus and people’s offices 1305 01:06:47,700 –> 01:06:49,710 that I wouldn’t necessarily expect. 1306 01:06:49,710 –> 01:06:52,260 I see it pop up on Twitter from a group 1307 01:06:52,260 –> 01:06:54,300 that I’ve never heard of that have found it. 1308 01:06:54,300 –> 01:06:59,300 So it’s again kind getting back to communication 1309 01:06:59,340 –> 01:07:02,640 and just sharing stories as ways of educating 1310 01:07:02,640 –> 01:07:05,580 and influencing people, it’s powerful. 1311 01:07:05,580 –> 01:07:08,610 Sharing cartoons has really, I mean, 1312 01:07:08,610 –> 01:07:09,657 you can find dozens of them. 1313 01:07:09,657 –> 01:07:13,920 And there’s over 340 plus of the cartoons 1314 01:07:13,920 –> 01:07:17,610 that Kevin and I have developed over the years. 1315 01:07:17,610 –> 01:07:21,540 And you can find them in all different places. 1316 01:07:21,540 –> 01:07:23,990 You know ’cause you were in my office many times. 1317 01:07:24,870 –> 01:07:26,100 When I had an office here, 1318 01:07:26,100 –> 01:07:29,730 I used to have a shelf that included books 1319 01:07:29,730 –> 01:07:31,980 where the cartoons had been reprinted. 1320 01:07:31,980 –> 01:07:32,960 And it’s interesting to me. 1321 01:07:32,960 –> 01:07:35,050 It was always interesting to me because 1322 01:07:36,330 –> 01:07:39,210 I had a real hard time finding a publisher 1323 01:07:39,210 –> 01:07:41,730 originally for the cartoons, 1324 01:07:41,730 –> 01:07:45,720 even academic presses that had published, 1325 01:07:45,720 –> 01:07:48,000 that I published books with 1326 01:07:48,000 –> 01:07:49,980 didn’t wanna publish the cartoons. 1327 01:07:49,980 –> 01:07:54,240 And it took literally a mom and pop publisher, 1328 01:07:54,240 –> 01:07:59,040 very tiny publisher Peytral Publications in Minnesota 1329 01:07:59,040 –> 01:08:01,380 to take a chance on publishing them. 1330 01:08:01,380 –> 01:08:06,060 They ended up publishing four books of cartoons and a CD, 1331 01:08:06,060 –> 01:08:10,380 an interactive CD, which now, nobody uses CDs anymore. 1332 01:08:10,380 –> 01:08:11,253 What’s a CD? 1333 01:08:15,000 –> 01:08:17,730 And then they sold the distribution rights 1334 01:08:17,730 –> 01:08:22,170 to Corwin, a SAGE company. 1335 01:08:22,170 –> 01:08:23,730 And then eventually, they went out of print. 1336 01:08:23,730 –> 01:08:26,043 The first one was published in 1998, 1337 01:08:27,330 –> 01:08:30,120 which is a long time ago now, but they’re out of print. 1338 01:08:30,120 –> 01:08:32,130 But they’re still out there and available. 1339 01:08:32,130 –> 01:08:37,130 But they’ve shown up in the really unusual places. 1340 01:08:37,290 –> 01:08:39,990 You expect to see them in this special ed book. 1341 01:08:39,990 –> 01:08:43,530 But they’ve shown up in books 1342 01:08:43,530 –> 01:08:45,690 on Universal Design for Learning. 1343 01:08:45,690 –> 01:08:47,910 The UDL community has really picked up 1344 01:08:47,910 –> 01:08:49,860 on that particular cartoon, 1345 01:08:49,860 –> 01:08:54,753 but they’ve shown up in books about human diversity, 1346 01:08:56,760 –> 01:09:01,023 intellectual disability law books. 1347 01:09:02,460 –> 01:09:05,760 The American Physical Therapy Association 1348 01:09:05,760 –> 01:09:10,080 included five or six of them in one of their books 1349 01:09:10,080 –> 01:09:12,093 on school-based therapy. 1350 01:09:13,141 –> 01:09:15,480 And they just showed up in all kinds of places. 1351 01:09:15,480 –> 01:09:18,603 And they’re still showing up all these years later. 1352 01:09:20,010 –> 01:09:22,650 Yeah, I think I’d like to wrap it up 1353 01:09:22,650 –> 01:09:27,650 by saying we still have a lot of work to do. 1354 01:09:27,960 –> 01:09:29,400 Agree. 1355 01:09:29,400 –> 01:09:32,430 To support individuals with disabilities 1356 01:09:32,430 –> 01:09:34,020 and their families. 1357 01:09:34,020 –> 01:09:38,130 And one of the things I always encouraged my students 1358 01:09:38,130 –> 01:09:40,710 and anybody that I work with professionally 1359 01:09:40,710 –> 01:09:43,980 is to have a sense of urgency about this work, 1360 01:09:43,980 –> 01:09:47,100 because while we’re kind of researching 1361 01:09:47,100 –> 01:09:50,193 and debating about what’s the best thing to do, 1362 01:09:51,360 –> 01:09:52,620 kids are growing up. 1363 01:09:52,620 –> 01:09:54,690 Families are dealing with stuff, 1364 01:09:54,690 –> 01:09:58,920 and they don’t have the luxury of all of this. 1365 01:09:58,920 –> 01:10:03,920 And so we need to do as much as we can to approach 1366 01:10:05,640 –> 01:10:10,640 the challenges as quickly and effectively as we can. 1367 01:10:11,700 –> 01:10:14,730 And I think that one of the other kind of general things 1368 01:10:14,730 –> 01:10:17,340 that I always shared with my students regarding 1369 01:10:17,340 –> 01:10:22,080 any practice, whether it’s a paraprofessional 1370 01:10:22,080 –> 01:10:23,640 providing lots of instruction 1371 01:10:23,640 –> 01:10:27,330 or some therapy approach or whatever, is to ask yourself, 1372 01:10:27,330 –> 01:10:29,670 would that practice be okay 1373 01:10:29,670 –> 01:10:31,677 if the student didn’t have a disability? 1374 01:10:31,677 –> 01:10:35,010 And if it’s not, you probably shouldn’t be doing it. 1375 01:10:35,010 –> 01:10:38,640 But it’s a good question to be asking. 1376 01:10:38,640 –> 01:10:42,510 I think also, we need to be really continuing 1377 01:10:42,510 –> 01:10:47,510 to be reflective and kind of hold a mirror up to ourselves, 1378 01:10:47,970 –> 01:10:49,890 ’cause a lot of things that get labeled 1379 01:10:49,890 –> 01:10:52,413 as inclusive are not very inclusive. 1380 01:10:54,120 –> 01:10:56,940 Just physically having a student with a disability 1381 01:10:56,940 –> 01:11:01,143 in a regular class is not inclusive, I don’t think. 1382 01:11:02,220 –> 01:11:04,320 And we’re not gonna have time to go into all 1383 01:11:04,320 –> 01:11:06,720 the definitions of inclusion or characteristics, 1384 01:11:06,720 –> 01:11:09,780 but the point is that it’s about belonging. 1385 01:11:09,780 –> 01:11:11,070 It’s about, well, it’s about belonging, 1386 01:11:11,070 –> 01:11:16,070 but there’s a group of people that have created 1387 01:11:17,040 –> 01:11:20,490 kind of a paper tiger where they want you to make 1388 01:11:20,490 –> 01:11:22,920 a dichotomous choice and they’ll say, 1389 01:11:22,920 –> 01:11:25,440 look, we can include kids, 1390 01:11:25,440 –> 01:11:27,930 but they’re not gonna get good instruction, 1391 01:11:27,930 –> 01:11:30,600 or we can give them really great instruction, 1392 01:11:30,600 –> 01:11:31,980 but the price of that is we’re gonna have 1393 01:11:31,980 –> 01:11:36,000 to segregate them to do all of our systematic instruction. 1394 01:11:36,000 –> 01:11:38,853 And I think that that is a false dichotomy. 1395 01:11:41,130 –> 01:11:43,410 Not only is it an unnecessary choice, 1396 01:11:43,410 –> 01:11:46,620 it’s a bad choice because the only way people 1397 01:11:46,620 –> 01:11:49,830 with disabilities are truly going to have 1398 01:11:49,830 –> 01:11:53,070 the same opportunities and truly be included, 1399 01:11:53,070 –> 01:11:55,740 is if we say, “You know what? 1400 01:11:55,740 –> 01:11:57,267 You have to have both.” 1401 01:11:58,650 –> 01:12:01,920 Having good instruction in the segregated 1402 01:12:01,920 –> 01:12:04,470 environment is not acceptable. 1403 01:12:04,470 –> 01:12:07,530 And being physically present and not getting 1404 01:12:07,530 –> 01:12:10,650 good instruction is also not acceptable. 1405 01:12:10,650 –> 01:12:13,140 We have to have a really higher standard 1406 01:12:13,140 –> 01:12:16,020 in saying people with disabilities 1407 01:12:16,020 –> 01:12:18,300 have a civil right to be included. 1408 01:12:18,300 –> 01:12:23,190 Now, our job is to figure out how we’re gonna provide them 1409 01:12:23,190 –> 01:12:26,400 with high quality curriculum and instruction 1410 01:12:26,400 –> 01:12:30,690 that they deserve and the supports that they need 1411 01:12:30,690 –> 01:12:33,810 in order to access that learning. 1412 01:12:33,810 –> 01:12:36,060 That that’s where we should be focusing on. 1413 01:12:36,060 –> 01:12:38,580 Not this, should we do it, should we not? 1414 01:12:38,580 –> 01:12:40,770 You can have one or you can have the other. 1415 01:12:40,770 –> 01:12:44,234 And I think that I wanna just challenge people 1416 01:12:44,234 –> 01:12:48,480 to think about that and also to know that for those of us 1417 01:12:48,480 –> 01:12:52,380 that have seen this come from, I mean, 1418 01:12:52,380 –> 01:12:55,540 my earliest volunteer experiences were an institutions 1419 01:12:56,910 –> 01:12:58,710 and then I kind of lived through 1420 01:12:58,710 –> 01:13:00,690 the deinstitutionalization movement, 1421 01:13:00,690 –> 01:13:04,893 worked in that segregated schools toward inclusive schools. 1422 01:13:06,180 –> 01:13:10,570 Once you have experienced an effective collaborative team 1423 01:13:11,842 –> 01:13:15,120 as a teacher or a service provider or a family, 1424 01:13:15,120 –> 01:13:20,073 once you’ve experienced that true collaborative teamwork, 1425 01:13:21,660 –> 01:13:26,550 and you’ve seen the possibility of what actually can happen 1426 01:13:26,550 –> 01:13:30,570 for students with disabilities when they are truly 1427 01:13:30,570 –> 01:13:32,643 included and appropriately supported. 1428 01:13:33,750 –> 01:13:35,200 There’s just no turning back. 1429 01:13:37,230 –> 01:13:39,510 Every once in a while, I get asked 1430 01:13:39,510 –> 01:13:42,030 if I’ll do something for like a segregated school. 1431 01:13:42,030 –> 01:13:44,310 And it’s like, I know you’re working hard. 1432 01:13:44,310 –> 01:13:45,750 I know you’re trying to do good stuff. 1433 01:13:45,750 –> 01:13:47,460 I know you have good intentions, 1434 01:13:47,460 –> 01:13:50,310 but I can’t bring myself to do anything 1435 01:13:50,310 –> 01:13:52,980 that’s gonna strengthen you. 1436 01:13:52,980 –> 01:13:56,550 Creating a better segregated environment, you know? 1437 01:13:56,550 –> 01:14:00,473 But once you’ve tasted it and experienced it, 1438 01:14:00,473 –> 01:14:02,670 there’s just no turning back. 1439 01:14:02,670 –> 01:14:07,530 So I really hope that the next generation, 1440 01:14:07,530 –> 01:14:12,120 the current generation and next generations of teachers 1441 01:14:12,120 –> 01:14:15,610 and special educators and related services providers 1442 01:14:17,970 –> 01:14:22,230 do better, get farther than we’ve gotten, 1443 01:14:22,230 –> 01:14:25,350 because we’ve kind of ebbed and flowed 1444 01:14:25,350 –> 01:14:28,470 in terms of made progress and seen some backsliding. 1445 01:14:28,470 –> 01:14:29,430 Yeah. 1446 01:14:29,430 –> 01:14:34,390 And it takes diligence and it takes urgency. 1447 01:14:35,580 –> 01:14:39,270 And as my very favorite coach, Marv Levy, 1448 01:14:39,270 –> 01:14:41,040 former Hall of Fame, 1449 01:14:41,040 –> 01:14:43,620 Buffalo Bills coach used to say about women, 1450 01:14:43,620 –> 01:14:46,410 I say the same thing about inclusive education, 1451 01:14:46,410 –> 01:14:48,840 which is that it’s simple, but it’s not easy. 1452 01:14:48,840 –> 01:14:50,340 Not always easy. 1453 01:14:50,340 –> 01:14:52,380 And I think that that’s true about inclusion. 1454 01:14:52,380 –> 01:14:54,690 This is not rocket science. 1455 01:14:54,690 –> 01:14:57,453 Families do this all the time. 1456 01:14:58,410 –> 01:15:02,550 Families are the best models that we have 1457 01:15:02,550 –> 01:15:05,460 in real life for how you include, 1458 01:15:05,460 –> 01:15:10,440 really include someone who has a significant disability. 1459 01:15:10,440 –> 01:15:14,460 So it’s not rocket science. 1460 01:15:14,460 –> 01:15:18,750 It’s not that hard, but it’s not always easy. 1461 01:15:18,750 –> 01:15:20,400 So I think that’ll end there. 1462 01:15:20,400 –> 01:15:22,140 I think that’s a great way. 1463 01:15:22,140 –> 01:15:23,670 Michael, thank you for doing this, 1464 01:15:23,670 –> 01:15:25,830 and thank you for just all your support 1465 01:15:25,830 –> 01:15:27,333 and mentorship over the years. 1466 01:15:28,423 –> 01:15:29,760 I’ve loved it. 1467 01:15:29,760 –> 01:15:32,910 I’ve grown so much from it, and I’m still learning. 1468 01:15:32,910 –> 01:15:33,840 Me too. 1469 01:15:33,840 –> 01:15:35,390 You’ve been great to work with. 1470 01:15:36,330 –> 01:15:38,529 -Thank you, sir. -Thank you. 1471 01:15:38,529 –> 01:15:41,112 (upbeat music) Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

   On this episode of the podcast, CDCI Research Assistant Professor Valerie Wood is joined by early childhood education professor Kaitlin Northey. Wood and Northey are two of the three authors of a recent study on suspension and expulsion in early childcare education settings across Vermont. They talk about why the study was necessary, what they found, and how comparing Vermont’s data to that of Colorado and Arkansas helped them determine a larger portrait of how suspensions and expulsions in these settings affect Vermont families. Dr. Northey is an assistant professor of early childhood education in the Education Department in the College of Education and Social Services at the University of Vermont. Dr. Wood is a research assistant professor with the UVM Center on Disability and Community Inclusion. “…how can you support the social and emotional development of young children when your own wellbeing and life is fraught? Is stressful? Is insecure? Our early childhood educators in Vermont do an exceptional job. They have carried families and children through this pandemic. They have carried our teachers in our teacher prep programs, supported them, mentored them. I mean, these individuals are working so incredibly hard.” A full transcript of the episode appears below. Valerie Wood: All right, welcome, Dr. Kaitlin Northey. I am really happy that you can join us for this episode of the CDCI Connects podcast. For the benefit of our listening audience, I am Dr. Valerie Wood. I am the research and evaluation coordinator at the Center on Disability and Community Inclusion or CDCI. And my research interest is in systems improvements, and this includes the state child welfare system and the state education system. And I’d also like to mention that this project that we’re introducing today was a partnership amongst yourself, myself, and our colleague, Dr. Lori Meyer, who was integral to the project. So with my introduction done, could you please introduce yourself? Kaitlin Northey: Sure, so my name is Dr. Kaitlin Northey, and I am an assistant professor of early childhood at the University of Vermont. And my research really focuses on policy implementation and issues pertaining to the early childhood workforce. Wood: Fabulous. So could you briefly describe the Promoting Inclusion and Exploring Supports or PIES study? Northey: Yes, well, first it’s important to mention that it was a quality improvement project that was funded by Vermont’s Child Development Division using Preschool Development Birth to Five Grant funding. And I’ll add that I thought it was really impressive that this project grew out of a recognition on behalf of the Child Development Division and Children’s Integrated Services, that there was an issue related to suspension and expulsion of young children from their early education settings. And I know we’re gonna define the term early education setting later in our conversation, but the fact of the matter was that the state itself said, “There’s an issue here. And we really want to  understand what’s happening and why it’s happening. What are the drivers of these decisions of suspension and expulsion?” Wood: I know we both get really passionate about perspectives around that. So what was the goal of the project? Northey: Our overall goal was really to better understand the supports and services that are available to the young children with specialized health needs in Vermont, to understand what kind of things are here to keep them in school and in their early care and learning settings. And we also looked to some other states for some advice about what we could do to help improve. Wood: That’s great, and you know, when I came into this project, my background isn’t in early childhood development or early education. I came at this from the perspective of disability rights, disability advocacy based on my experience at the Center on Disability and Community Inclusion. And I had no idea until I partnered with you and Dr. Meyer on this project, that there’s wide recognition that this is an issue. That kids as young as two and three are being suspended or expelled from these settings —  public pre-K settings, private education settings. That, in and of itself, was a little bit mind-boggling to me. Like what could a two or three year old be doing that’s necessitating that kind of extreme reaction? Northey: And we also know that it’s an issue within the system. Because it’s not like all children are being suspended and expelled equally. We know that Black children, boys, BIPOC children, children with disabilities — there are certain groups of children that experience higher rates of suspension and expulsion than you would expect to see given their percentage of representation in the overall population. So I think, especially since 2016, this has been a really big focus, even at the federal government level. But it was really wonderful to see a project like this get funded in Vermont so we could figure out what’s happening here. Wood: Yes, and thank you for really elevating the portion about disparate impact that some groups are disproportionately being affected by this problem. I do want to pause here to define a couple terms. And I know you wanna define a couple terms as well. So the first term that I’m going to define is specialized health needs. In the framing of our report, we talked about young children. We defined young as birth to six. That was the age group that we’re focused on. But young children with specialized health needs — that’s a broad term. To break it down, it really means that a person, in this case, a child, requires more care due to a physical, developmental, behavioral, or emotional difference. That’s a lot. There are these different domains. I think it’s important to emphasize there’s a lot of diversity under this umbrella term of specialized health needs And depending on the nature of that specialized health need, the kind of support a child might need in a classroom can look really different. As a concrete example, a child who has autism will probably need different support than a child who is a wheelchair user. So it’s a broad term in terms of the scope of what we’re looking at under specialized health needs. Another jargony term that we talked about in our report is multi-tiered systems of support, and this will come up in one of our recommendations. So multi-tiered systems of support — or MTSS as it’s abbreviated — is a term used in the field of education. It’s a framework that helps educators provide academic or behavioral strategies tailored to the needs of students. And one of the things I learned in this project is that the concept of an MTSS framework grew out of the Individuals with Disabilities Education Act (IDEA), which was passed by Congress in 2004. Again, the main point that I found fascinating is the passage of that act really became an impetus to encourage teachers and educators to be more proactive in the classroom? Rather than reactive. The way I heard it framed into what I viewed is rather than waiting for the child to fail to do anything about it, it’s identifying what supports the child needs to be successful at the outset. Being proactive instead of reactive. And like a lot of things related to disability, what the literature shows is that the MTSS framework benefits all students, not just the students with disabilities. Northey: Exactly. Wood: Great, and then what other terms would you like to define for our listening audience? Northey: I wanted to talk about ECE because it’s a little acronym that we throw around. It can mean early care in education. It can mean early childhood education. The field defines early childhood education and early childhood and early care in education as really being relevant to ages birth to age eight. Obviously, part of that continuum crosses into elementary school, right? So when we were thinking about this study and really framing it, we really focused on birth to age six like you said. And we were really looking at the early care in education settings that children were experiencing prior to kindergarten entry. And so that’s really diverse. It could be in an early head start classroom, a head start classroom, a childcare at a center, a family based childcare. It could be at a public preschool classroom that’s based out of an elementary school or a school district. I mean, there are a lot of different settings each with their own regulations and qualifications and those types of things. And so when we think about these children, they’re sometimes in multiple settings, right? They’re experiencing all different types of interactions with early childhood professionals throughout their early lives. And so early childhood education, ECE, is a term that might come up when we refer to early childhood. Know that for this study, we were really thinking about birth to age six. Wood: Great, thank you, that’s so helpful. So the goal of the study was to really investigate what’s happening with young children ages zero to six in these ECE settings related to suspension and expulsion with a focus on children with specialized health needs. So how did we — in partnership with Child Development Division and Children Integrated Services — how did we go about answering these questions for our study? Northey: Well, I think the first thing that we started thinking about was what do we know more broadly, right? Which is actually a part that you oversaw was really thinking about the literature. What’s out there? What do we already know? What themes have been shown to be important? And we then started thinking about, “Okay, who in the state would be our key performance?” We identified state leaders who had different areas of oversight related to ECE settings in Vermont and other early childhood professionals such as providers in Vermont. We also talked to early childhood state leaders and kinda program coordinators in two other states, in Arkansas and Colorado, to see what are they doing, what’s working well for them, what have they learned, because they were really tackling this as a problem a bit earlier than we were. Wood: So Dr. Northey, could you say a little bit more about how you landed on Arkansas and Colorado as two other states that you wanted to look to? Northey: Yeah, absolutely. So we had reviewed some of the literature about what are states doing, right? What’s going well? What states are kinda being recognized for their efforts? And because we were interested in looking at this from a state level, there had been other programs that might be city-led programs or regional programs that were also getting kudos as you’d say, but these two kind of rose to the forefront. It’s important to know that not every state is perfect. But in terms of what we were interested in learning, they really offered great suggestions and opportunities for us to learn more about their practices. Wood: That’s great, thank you for sharing a little bit about the thinking behind that. You had mentioned that we conducted a literature review. I’ll just talk a little bit about that piece. The literature review, when you’re looking at doing research, that’s almost the natural starting place. But for me as a person that kinda led the effort on the literature review, it was always in the forefront of my mind that we wanted to ground any recommendations we made to the state of Vermont in the literature to make sure our recommendations were in line with best practices. Again, going back to the idea that this was a quality improvement study, so I had a really specific purpose to inform systems in Vermont in terms of how they can better meet the needs of children and families with special health needs that are seeking out an early education setting for their child. So that was one of the reasons to do a fairly thorough literature review. And then the other piece that I took the lead on was I interviewed parents of children with special health needs who had sought out early education settings for their child. And we’ll talk a little bit later about the timing of the study, but in addition to offering the option to be interviewed, because parents in general, everybody is busy, but parents are busy, it worked better to offer a dual option for the collection, for that population to say, you can participate in an interview, or you can participate in an online survey. And so the bulk of the data that we collected from the parent or family perspective was through the survey results. Northey: I think that piece was really important because there are some studies that look at how states are functioning and they just look at the state level. And I think what we were really doing is we were looking at it from the state throughout these different levels, right? From the provider who’s actually overseeing a center to thinking about, well, how are families experiencing this? Right? And so when we talk about wanting well-coordinated early childhood systems, we want them to work for families, children, and educators. Getting the perspectives of the people that are on the ground being impacted by the suspensions and expulsions of their children was an absolute key and strength to this work. So I applaud all of your efforts that you managed to get those perspectives. Wood: Well, thank you, yeah. And that’s one of the things I’m really passionate about this project is the fact that we looked at this issue from like a multifaceted perspective, right? You got to talk to providers and got so much insight into what’s going on with providers because this isn’t a easy decision for anyone, right? Not for the parents on the receiving end, not for the providers who are the ones that need to make those decisions, recognition from state leaders that there’s an issue. So I appreciated that everyone had a shared recognition that this is a problem, but then their identification of what are the drivers of the problem and where do we have kind of an overlap in thinking there. I think we’ve already started to touch on this, but I would love to move into your thoughts about why was this work important to you? Northey: Well, I look at policy implementation. I think a lot about the impacts that policies have and I want to understand the nuances of how they’re experienced, right? I wanna know, okay, you have a policy, how does it work for people? What is the who, what, where, why, when, and how of how it’s actually experienced? Because I think even well-intentioned policies can end up having unintended consequences that are felt really significantly by educators and parents and children. And so thinking about any policy that we pass, I get really excited to see how is it working. What decisions are being made? How does it trickle down into being implemented? Just learning more about it. And this was a great example of, okay, something is happening in classrooms and settings for young children across the country, but even here in Vermont, how do we learn more about it? What do we know and how can we then design policies to keep children safer, to better support them, to give teachers what they need? So I was really passionate coming into this about what can this tell us about the system and about policies. How about you? Wood: Yeah, so I think some of the passions that drove me while we were working on this project was we knew there was a child care crisis in Vermont. There’s been recognition of that for some time actually, and then layer on top of that, the perspective of parents of a child with a special health need — of which I am one, so I can relate to this issue. And this idea that there’s a childcare crisis, and then finding providers that both are knowledgeable and have the comfort to care for your child, it restricts your options even further. And I would relate, I live in Chittenden County, so I live in a county that most people would say is fairly well-resourced in this regard and I still encounter that challenge. Then when we were conducting the study, we had the pandemic, right? And so lots of childcare centers either like temporarily went on hiatus or many permanently closed. It’s a childcare desert in the way that people talk about food deserts, right? And fun fact: I actually found a website that you can go to to see if the area that you live is in fact a childcare desert. So I really wanted to understand for families that have taken that step of finding a provider that can care for their child while they’re either working or attending to their other life needs. And then your child is suspended or expelled. And I wanna recognize a lot of parents go through this experience and they never hear those words. I’ll talk about that a little more in our discussion, but they’re not labeling these experiences as suspension or expulsion. But you get to a point where there’s recognition that your child isn’t going to be able to stay in their early care setting. It becomes so much to manage to then find another one when you have all these limiting factors. So I really wanted to help the state because I think this is a systems problem. So it provides a systems solution. And I heard some of that language echoed in a recent webinar put on by Building Bright Futures, which I know is one of our kinda allies in this work. So how can we help the state create a systems-level solution for this problem? Northey: You mentioned a childcare crisis a few times. So when you say it, you’re talking not only about a shortage of actually centers or places for children to go, like the settings themselves or a spot for a child to actually be enrolled. We also have a childcare crisis in terms of staffing, right? So a center might have the space, but they don’t have an educator to actually staff the room. Was there anything else you meant by childcare crisis? Wood: I think those two pieces cover it. I think on the ground from the family perspective, it’s like, “Can I even find a center that has a capacity to take my child into a classroom?” Right? And knowing that there are different staffing ratios depending on the age of children, so younger children, you want there to be lower staffing ratios for younger children compared to somewhat older children that are maybe getting ready to move into kindergarten in the next year. And thank you for raising the other piece which is of the workforce. I know that’s the piece that you’re really passionate about along with policy. How are we preparing the workforce in order to meet the needs that families have, right? It’s like we need more support to do both of those things. Northey: Yeah, and I think when you said that when we bring specialized health needs into the equation, all of a sudden it gets a lot more difficult. Because not every setting might be able to meet a child’s needs or their learning needs. That was something that I came to better understand through this study and this work. I didn’t realize the extent of that and how hard, I mean, I knew it would be difficult for parents, but I just can’t imagine the additional stress that it puts on families. Wood: Thank you for naming that. I think there is an added stressor there that families are certainly carrying around. So that’s kind of the context of our study. Now, what did we learn? Northey: We learned a lot because we gathered a lot of data and I think we had the wonderful but difficult task of really piecing it together. Because when you’re trying to understand an early childhood system, it’s really complicated. Because there are these different settings, sometimes which are overseen by different state agencies and divisions. And so thinking about all of these kind of services together and really focusing on children as the center. Like, “What does this mean for children?” Really helped us. And I think when we were looking across the data, some themes definitely emerged. The first one I would say is really informed by a lot of the interviews that we did from Arkansas and Colorado as well, right? Some of their strategies that help them minimize and reduce suspension expulsion actually came down to working together, to actually collaborating and learning about each other’s part of this early childhood system. And so it’s really inspiring and it also makes it seem like making changes more achievable. Because when we have state leaders who, again, are responsible for their kind of segment of the system, they understand what’s happening in centers and public pre-K classrooms or family childcare. They understand what’s happening for these children and the families and the coaches or the regional supports that are in place. And so when they understand how their work gets implemented they’re also aware of the political and policy context that come with their work. When we get them to work together at the state level, all the sudden we have kind of all the keys we need to open the doors. If we can get that collaboration happening in a way that it’s streamlined, well-coordinated systems for families and children and early childhood professionals, all of a sudden, things are working a lot better. So I would say collaboration was actually one of our really key takeaways is that it’s something kind of simple that can actually strengthen and improve early childhood systems across these different levels and across these different agencies. I would also then say, obviously, my passion for supporting the early childhood workforce is very well-known already on this podcast. And so I would say the other biggest takeaway that I had was that it all comes down to the wellbeing of the early childhood workforce. I think consistently hearing and reminding people that: it is the adults that choose to suspend or expel children. It is the adults that feel overwhelmed or too stressed or too unsupported and under-resourced to actually support children and their families. That was a really big takeaway for me. Because we can often say, well, “What is this 18-month-old doing that is so egregious that they need to get sent home?” And it might not be so egregious, right? So thinking about the wellbeing of the workforce, and we know that their early childhood workforce is notoriously under-compensated, right? When we think about not getting paid enough, the stresses that go along with that. I personally left working in the K-12 system to work in early childhood and the pay cut that came with that meant that I had to work a part-time job. Thinking about these early childhood educators as doing their best in the moment, but also recognizing that not paying them well means that their lives are pretty stressful and they might not be able to support children with the calm, patience, and compassion that is always needed to kind of get them through those really tough moments. Wood: Kaitlin, I think you’re raising a really important point here about the wellbeing of the workforce.  I tell my own kids all the time: teachers are people too. And so it’s really important to remember that we don’t understand the entire scope of their lives. We get these small windows into their day through our children’s experiences and our own experiences with them. And you’re just raising a really important issue. I know that during the study, as part of the interviews you conducted, a really illuminating story was shared with you, and I was wondering if you could share it with our audience. Northey: Yeah, so it was actually from one of the states outside of Vermont that I had spoken to. And someone had — she was in charge of kind of a program where they went in to support teachers in helping implement positive behavioral supports for children. She had gone into the center director’s office and she was just saying, “Goodbye, thanks for a great week. I hope you have a great weekend.” She saw all this camping equipment and she said, “Oh, are you going camping?” And [the center director said, “Oh no, it’s for some of the teachers. They actually don’t always have reliable places to live.” And I think just… *sighs* That coach had said it, but I feel it so deeply. Like how can you support the social and emotional development of young children when your own wellbeing and life is fraught, is stressful, is insecure. And I think our early childhood educators in Vermont do an exceptional job. They have carried families and children through this pandemic. They have carried our teachers in our teacher prep programs, supported them, mentored them. I mean these individuals are working so incredibly hard. They are well-qualified for their positions and they know children — they’re doing their best. Teachers deserve to be well-compensated. And so that means fairly compensated for their work. And also receiving benefits. I think it’s really interesting and problematic that when COVID hit, the COVID-19 pandemic started: higher ed closed, K through 12 closed, and early childhood centers closed for a little bit… but then they really soon opened back up. And these were some of the educators in our overall education system that are the lowest compensated and the most likely to lack health benefits. And so thinking about what position that puts those educators in, is really tricky. I also just wanna go back to when we think about teacher wellbeing, which is again supported by the research, right? We know that stressed-out teachers, teachers that have too many children in a classroom, teachers that are experiencing things in their personal lives, we know that they’re not as able to impact kind of children’s learning and development in the positive ways that we want them to be. The research supports this, and especially when it comes to suspension and expulsion. There is a direct correlation between teacher wellbeing and the rates of suspension and expulsion that we see for young children. So when I wanna think about these teachers as well, I also wanna say they need to be well-qualified. They need to have the training and education to support the children that are in their care. And I think this has come up for us a few times in this conversation — this idea of supporting all children, right? Children with specialized health needsmight have specific needs. Are the typical early childhood teacher preparation programs preparing those teachers for that? Possibly. But they might also need some ongoing professional support, right? Some access to additional training. And the research suggests that if that training can do with meeting children’s specialized needs or — and, I should say, and — the social and emotional development of children that will lower the rates of suspension and expulsion that we see for young children. So it’s really fascinating. I think I obviously come into this project thinking about the workforce and thinking about policy, but I was really struck by how many of our recommendations really focus and involve educators at the center and thinking about the interpersonal dynamics at the state level, right? That collaboration, the wellbeing of the workforce. I’m gonna hog the floor while I have it and say that another one of our recommendations focused on a data system. So, having a data system where multiple entities can contribute, can access that data (obviously in safe and protected ways for children) is really key to, first of all, understanding the suspension and expulsion that’s occurring and into kind of bringing all of our early childhood settings into one space where they can all meet children’s needs. Because a lot of children intersect with different aspects of this system, right? It is not unusual because of our state UPK system (Universal Pre-Kindergarten) which offers 10 hours of universal pre-kindergarten a week, that a child going to UPK will also go to kind of wraparound care at another center or setting. And maybe another, right? So already you have a child who might be present in multiple systems. Having a data system in place where all of their information and the supports they’re receiving and past issues that they’ve had can really come together would be really helpful. And I will just say that Building Bright Futures has been working really hard as kind of a leader in this effort. They actually just released a policy brief or a data brief this past March. It’s really impressive how much they’ve already moved this work forward just since our report was published in March of 2021. And it’s been an ongoing issue in Vermont. So that was really exciting. I mean, okay, so thinking about the report, what else did we learn, Valerie? Because I have called you before. Wood: Yeah, yeah. No, all that information, it’s so great to hear from your perspective. And the analogy that came to mind when you were talking about the workforce and making sure that we’re caring for the workforce so that they’re well-prepared to care for our children? As a parent, I’ve heard this so many times: when you’re flying on the plane, put your own oxygen mask on first, because you can’t care for others if you’re not taking care of yourself, right? I think that’s really applicable in this scenario. What are we asking of our teachers? And if we’re asking so much of them, are we equipping them with the things they need to feel well-supported? You talked about looking at salary, looking at benefits, but also looking at professional development opportunities. I think that’s all really important. A couple other lessons that we learned and recommendations that we put forth, were thinking about policies that are inclusion-centered. So at the top of our conversation, I mentioned IDEA, which is the policy that protects the rights of children with disabilities to get an education. But like so many things, it was an add-on, right? There was already a public education system and then there had to be this push to say, “Well, we need to make sure that the rights of people with disabilities are protected and that they’re having the same access to a free and appropriate education.” And so in so many conversations about diversity, equity, inclusion, there’s this idea of like flipping the script around to say instead of thinking about equity as an add-on, equity needs to be at the center, right? And so this case we’re centering equity for children with specialized health needs and their families that love and support them. So what would it look like for Vermont to really take a stance to say, when it comes to early education settings, that’s inclusion-centered. When I interviewed some of the parents, some of them either in their interviews or in the survey data that I reviewed mentioned that they didn’t even pursue childcare or an early education setting for their child because they had no confidence that there were any providers in their community that could meet the needs of their child. I think about that. What are we asking of the parents in that situation, right? Are they sacrificing their desire to work? That means the family is bringing in less income. Like, there’s real ramifications when families have to choose between working or staying at home for their child. Again, I wanna recognize diversity of all families. For some families, having a stay-at-home parent is the right choice. And those families should be celebrated. But it should be a choice, right? If somebody wants to work, they should be able to figure out within the early childhood system how that can work for their family. So I think the inclusion-centered piece actually dovetails with what you’re talking about professional development, right? So we might need a lot more professional development opportunities for providers to understand: How do you work with a child that uses a feeding tube? How do you work to set up your center so that it is 100% percent wheelchair accessible? Knowing that for some of these places, the size of the classroom, that’s your footprint: square footage, you’re paying taxes. There are financial repercussions to say, space the tables out. That means fewer children can fit. But you’re doing the right thing to say, “We value inclusion and we value all students.” So I get really excited when I think about the possibility there for policies that are inclusion-centered and that meet the needs of all children seeking care. Northey: I think it’s so important though that you’re saying we need these policies that are inclusion-centered and we need the support so they can be implemented, right? We need the extra funding so we can say, “Hey, we have to make a shift in the physical space that we are in.” We need maybe a nurse to come in to help us for a bit. Like we need all of those things, right? We need the policies and we need the supports in place to have a broader infrastructure to actually make sure that we can offer that support. Wood: Absolutely! Like please, no unfunded mandates. It’s one thing to pass the policy, but if you don’t put any teeth behind it, if you don’t put the financial support behind it, then the burden just either falls on the providers, and in a lot of cases, the story is then that burden gets passed on to the families, right? So yeah, it’s a systems-level problem that needs a systems-level solution. Another thing that we learned, and I wanna make sure to give credit to Dr. Lori Meyer here because this was a piece that she really led the investigation that led to this particular recommendation, but conducting additional research on the use of one-on-ones as a support strategy in Vermont’s early care and education system. And I remember her saying in the presentation that we did together that not all children need a one-on-one, but if our system is missing the less intensive support to those mid-level supports, then one-on-ones become a catchall resource to support children. So really thinking about, when that’s the only support that’s available to you, how many people are going to gravitate — and I heard this from parents, they’re like, “Well, we were able to access special funding to get our kid a one-on-one support and that was the solution that allowed our child to, the term we would use in from child welfare is to have placement stability within their early education setting. I think it’s a term that really applies here, right? Because changing schools is a kind of like instability that adds to stress for the child. And it’s a loss of funding for the providers. Like there’s so many impacts when a child is suspended or expelled, or asked to leave a center. But really she is very passionate about this recommendation of saying, a lot of children are accessing one-on-ones that probably could be supported with a less intensive. So could that be a two-on-one? Or is that having a lower teacher-to-student ratioin classrooms which you reference as part of teacher wellbeing? Northey: Exactly. Since we’ve done this report, I’ve had quite a few conversations with people about it and I recently was talking to a childcare center director who was trying to estimate the costs involved, but really making safe spaces for children. And she said, “I’ve never suspended or expelled a child.” But that might mean that a child has to be in a classroom with fewer children, which are spots that she’s not able to fill. It might mean that she has to hire someone else to go in as an extra part-time teacher and support. So I think it’s important to also name that center directors and leaders of these settings are already trying to use their own resources as well to solve these problems. But I mean, it’s just so difficult. So yeah, more stories are needed to help us really inform the legislature about like, how do we do this? How can we make this better? Wood: Absolutely. Another one of the recommendations that grew out of Lori’s work on our project was investigating and investing in an early multi-tiered system of support. Vermont already supports the implementation of multi-tiered systems of support in K to 12 schools. So this would just really be broadening the scopeof what they support to say we’re also going to include these early education settings in the policy that supports MTSS systems. The model that I am most familiar with that falls under the umbrella term of multi-tiered system support is positive behavior interventions and supports or PBIS. And we have expertise already in the state of Vermont around implementing PBIS. So what could that look like to say we’re also going to include these other settings. Our outcome was preventing suspension and expulsion. But really, you know, as someone who has worked with the team that implements PBIS in our state, it’s really looking at the holistic health of our student population. It’s really interesting. This project really helped me understand: schools are a unique community and so why are we excluding early childhood education systems from that, right? And so really starting to say, it’s a continuum of your educational experiences from birth, from beginning to end. Ideally, I’m an academic, learning never ends. That’s not everyone’s experience. But really, I think the state of Vermont should consider what that would look like in terms of folding in these other settings into best practices that we know support students. Northey: Yeah, in early childhood, we often talk about a continuum of learning, right? It means building a kind of horizontal alignment, right? Between your head start, public preschool and preschool. And it also means that vertical alignment. So everything that’s happening from infant — from that early head start experience — is going to impact what’s happening later. So how do we align things? How do we get our standards in order for learning? And how do we get our policies in order to transition? All of these thing that it might seem from one perspective that they are just different systems, but in reality and how children and families experience them and educators in many instances, they’re one system altogether. Ideally, right? Like we really want to think about these things as being interconnected and honor that interconnection. Wood: Absolutely. And then the final recommendation that we put into our report to the state of Vermont 9 which we’ve kind of showcased in some of the presentations that we’ve done together as a research team) is creating policies for warm handoffs when families are asked to change childcare providers. Alright, I’m gonna just be really honest, with you and our listening audience, and say I really hesitated. That’s a recommendation that grew out of the parent interviews and survey data that I collected as part of the project. They really hesitated to put that in there because really if we are being inclusion-centered, suspension expulsion will never happen. Families are not asked to change childcare provider. It’s really having a conversation with the family to say this is what’s happening in the classroom, this is what we’re observing in your son or daughter and we want to make a plan with you to figure out what additional supports are needed. So it’s very idealistic, right? And we’ve talked about, obviously some of the challenges around that. Is it really fair to ask providers to do even more given some of the stressors that we’ve talked about? But knowing that at least for now, suspension and expulsion may still happen because those options are completely eliminated, at least saying to the family, “We understand this is really hard to hear. That we are not in a position to adequately support your child at this time. But! Here is someone from…” Is it children’s integrated services? Is it child development division? There are experts out there that can be invited into those conversations to help the family locate other options. To say here’s a provider who has experience working with us. Or there are no providers that have this expertise, but we are going to provide professional development training, and this person’s willing to take that on. So in the report I said, no families should be left out in the cold, right? Because that’s what it feels like: ” We can’t care for your child. Goodbye.” Like suddenly, you’re not the core problem for that childcare, but as a family you’re just left struggling to figure out what do we do next. And it’s really hard. Northey: Yeah, absolutely. I’m glad you included it. Wood: Well, thank you. I really was on the fence about it. So those were some of our lessons that we learned, some of the recommendations we made to the state. There were also challenges when we were conducting this study. So what would you like to share? Northey: Oh, well, let’s go back to January, 2021. What challenges could there possibly have been?I would obviously say that the pandemic presented one of the biggest challenges. I think when you’re designing a study, you are thinking about all the different things that could happen. But I really think that it presented some challenges for us in terms of the time that other people had to give to us, the bandwidth they had to do one extra thing, right? So I think that we can’t ignore the fact that this data was gathered during COVID and in a very short timeframe, right? I mean… Wood:  *laughs* Yeah, we had three months. Northey: Yeah, yeah, we started in January and our report was due at the end of March. And then we can’t just gather the data then write a report. You have to analyze that data. So it was a very quick-paced and maybe grueling experience, but a valuable one. That was a challenge for sure. Wood: I’m really amazed at the depths of what we were able to learn, right? And I think that speaks to the teamwork that existed between the three of us to highlight what can happen when people are collaborating. So we came into this project with like clear areas of both expertise and passion. And from the outset, it was very clear, the pieces that Lori wanted to take the lead on, that you wanted to take the lead on, that I wanted to take the lead on. And so we were able to just synergize our effort in this really beautiful way that I think continues to feed into some of the discussions we’re hearing at the state level. The state is really grappling right now with where do they go next with the concept of supporting young children and early childhood education. And I know that Building Bright Futures had an independent research group look at a governance study to say what recommendations will they have and should it all be consolidated under Agency of Education? Should it all be consolidated under Agency of Human Services? Should something new be created? And I won’t speak to their recommendations because that’s a little bit beyond the focus of our conversation today. But I do think it’s fascinating that I see this as this was like a first step in the state really grappling with this question. (Or maybe not the first step; I think they’ve been grappling with it for some time.) We were able to provide additional insight, both based on research literature and the lived experiences of providers in Vermont, of parents in Vermont about some of the pains that are experienced with the way the system’s currently structured. Northey: And the system structure as an issue has been well-acknowledged. That study that you’re referencing, the early childhood systems analysis, was actually paid for. The Vermont legislature passed it last year as part of H.171, now Act 45. Recognizing that if we want to improve our early childhood system, we need to improve that structure at the state level. I think it goes back to our finding about collaboration. I do think that when you have early childhood living in so many different sectors of the state, it makes data collection a little extra challenging. We were constantly concerned that we were missing a perspective, right? We would be in an interview and someone would say, “Oh, well, did you talk to this person?” And we’re like, “No. Yes, let’s talk to that person.” When we think about like efficiency as part of effectiveness? It is very spread out right now. And so I think hopefully, the legislature will reflect on that study. But I will say that it made some challenges for data collection and analysis for sure because I think it made us worry that we weren’t getting a full picture and so we ended up doing a lot more interviews than we probably initially thought we would. Wood: Yeah, I remember in our team meetings, you and Lori just sharing with me when we had our research huddles, so now we have three more people that we need to interview. And really, as a research team, the three of us feeling like to do justice to this work, we can’t exclude these different perspectives. So even inclusion of voice was a guiding principle of the way in which we conducted this study together. Northey: Yeah, obviously, I’m very interested in state governance structures. It’s like a nerd moment for me. I really love it. I love thinking about the implications of it, love thinking about how to improve it. I love thinking about all the things. But it was so fascinating and frustrating to be having that experience in our own state. And then when I’m trying to organize data collection in another state, they’re saying, “Oh sure. Do you wanna talk to all the leaders that interface with this? We all meet once a week. You can come to our meeting. We meet for two hours.” And being like, “Wait, you’re all there together at once?” So I think just that collaboration aspect, thinking about how people are coming together, thinking about how they’re organized. Yeah. Wood: I think that’s a great lead in to our next question, which is what do you see as the real world impact of this study? Northey: Okay, wait, before we get to that, I wanna say a little bit more about the context ’cause I think we mentioned timing as a challenge. You mentioned COVID as a challenge, but with that also, we were in this very rich moment in time where early childhood was really recognized as a profession that is important not just for the wellbeing of children and their future positive outcomes in life and benefits for society, but also a benefit for parents and families. And I think for our overall economy. Like we were in this really pivotal moment, asking questions about early childhood when actually people were listening and wanting to invest and improve. And there’s been a trend In the United States and internationally to really think about a shift in how we define the purposes of early childhood systems, right? So I think there was this focus on equality for a really long time. Like how do we get people access? We want all people to have access. We want all the children to have access. And that’s where you get some debates in the field about targeted versus universal. Where are things being offered? There’s been a shift in the past few yearsto really think about the equity of an early childhood system. And so not just about quantity and quality, but also can that system meet children’s diverse needs? Can it provide for children? Can it actually support children in the ways they need to be supported? And so our project came at a time when there are resources behind these efforts, there’s a desire for change. And so I think we’re gonna name the challenges. I also wanna just say like, “Wow, what a moment.” It was incredibly impactful and powerful, which gets me to your question about impact and thinking about, sometimes you work really hard and you write a research report and you submit it, and maybe someone you love and care about reads it, right? Maybe they don’t even read it all the way through. But this moment in time that we found ourselves, we had people emailing us for this report. “When is it coming out? What are you finding? Okay, if you can send me the report, can you talk to me?” There’s an interest in getting some improvement effort off the ground. We want to stop this problem. Head Start is kind of ahead of us because federally, Head Start has said you cannot suspend or expel children from a Head Start program. You have to document all the support you’re giving them. We’ll give you resources. And so again, thinking about the multiple systems that children experience and whether they’re equitable, we want all children to have access to that, right? And so I would say that one of the first ways that I felt we were having an impact was the conversations that we had with advocates. We were invited to meetings. Lots of meetings. We were invited to talk to people about: “What do we do with this? We read your report, we love it, we read your recommendations, what do they mean?” That was really powerful for me. Because I think it’s something that maybe didn’t get a lot of attention. And so last spring, actually, our report, I think it wasn’t made public until maybe May of 2021. But the Vermont legislature passed Act 35, which said you cannot expel or suspend young children, zero to age eight, from a public setting. Well, we use a mixed delivery approach to early childhood. And so what is public? You might be a child in a private childcare center, but you get 10 free hours of public pre-K week. And so thinking about the limitations of that policy, again, while well-intentioned, it left a lot of holes. It left a lot of uncertainties. It left questions. Some of the basic ones being like, “How are we defining suspension and expulsion? What does that mean for an infant? What does it mean for a toddler? What does it mean in a family childcare setting versus a public pre-K in an elementary setting?” I think our work raised a lot of questions. And it raised a lot of really valid points in conversations to the point where this passed legislative section. They expanded that law and they said that it is now not okay to suspend or expel children from public or private pre-qualified programs. And Building Bright Futures is going to work with the Agency of Ed and the Child Development Division to really think about not only defining these terms, but really coming up with explicit examples of what they look like in these spaces because they think you’re right. Something you said earlier at the top of this is families don’t always know that their child is being suspended, right? And you could probably speak to that more than I could, but I do know even when I was a teacher in a childcare center, a parent might get a call saying, “Oh, your child can’t get through their day. Can you come pick them up?” That is pretty much a suspension unless they have kind of like a fever or something going on. So thinking about, okay, naming what these things are. Our work has had an impact, but it’s also benefited from being in this moment in time, nationally and in our state. I’m really curious to see how the momentum of this moment moves forward because we have a lot of efforts right now in Vermont to advance early childhood as a profession, to talk about having a workforce that is well-qualified, well-compensated, and why that is so important. And that directly intersects with what we are talking about in this report, right? And so if we’re going to pass a policy that and update it to say you can’t suspend or expel children, well, great, research tells us that teacher wellbeing is key to that, teacher compensation, key to that, teacher preparation and knowledge, key to that. So we can’t really do one thing without really fixing that system as a whole. And so I think we’ve had an impact and I’m excited to see it continue to have an impact in those ripple effects. How about you? Wood: Yeah, thank you for sharing. I wanna go back to the piece about defining the terms suspension and expulsion. So that was kind of how we oriented our goal of this research project, was to understand and provide requisitions to the state around suspension and expulsion of young children to ultimately eliminate, but at least to prevent it, right? And in my both literature review and then in conversations with parents that are sharing, their very personal experiences of their child based system itself, the majority told me or wrote in their survey information, nobody ever used the term suspended or expelled. So there’s actually a term for that in the literature. It’s called a soft suspension. And so what that looks like, right? All right, context setting: most of these families are enrolling their child in an ECE setting because of work considerations, right? But then you’re getting call. Little Johnny did this. Or Little Janie did that, right? And like you said: they are having trouble getting through the day. They’re having trouble maybe self-regulating. We need you to come pick up Little Johnny or Little Janie. And then you get a call again two days later. And you get a call again the next day. It just becomes this pattern where, as the parents, you can no longer rely on your child making it through the day. When it starts to be disruptive to your ability to fulfill your other responsibilities, whether they’re work-related or again, other life considerations, that’s when actually, most of these conversations around self-suspension is the parents just recognizing, “This particular center or this particular setting, they can’t meet my child’s needs. I’m withdrawing them from care.” It feels like this gray area that the state’s really going to have to grapple with. Because on the one hand, the parent isn’t being asked to remove the child, and as someone who went through this, you get the sense that it’s gonna happen and it’s in some ways less painful for you as the parent to be the decider and the agent of change than almost giving that power to someone else to say. Right? There’s power dynamics there. And who has agency to make those decisions? Is the parent or the provider? And the child’s kind of caught in the middle. Northey: Yeah. I wanna add onto that a little bit. I think it’s important that you name those power dynamics, but also just, I imagine as a parent, you wanna drop your child off at a place that can meet their needs and where you feel they’re safe and they’re not just safe, but maybe having a great experience in developing friendships and meaningful relationships with adults and children, and learning about the world. And you might not feel safe doing that, or you might feel like your child is misunderstood or not valued to the same extent. Wood: Yes, thank you for naming that. And there definitely was some parents who shared some of that emotionality in their stories with me as part of the project as well.And then we were talking a little bit under challenges, right? The pandemic and that being part of the temporal context for this along with it is a very exciting time in Vermont as Vermont’s kinda asking these questions about where do they situate early childhood education within their state governance system. And I just wanna recognize that when schools, when the K to 12 system went virtual in Vermont, and you’re absolutely right, like many early childhood education settings temporarily shut down. I was one of those parents that was like, “What am I supposed to do?” And my kids, they’re all in the public education system now, but I felt the angst of parents of young children so much, and I understood those unfair pressures to our early childhood educators and providers to reopen. But as a working parent, it was like how am I supposed to get my work done and be all the things. Be parent, be teacher, be special education teacher, be an occupational therapist — I’m gonna name all the things — the physical therapist, the speech language pathologist, the behavior analyst, the therapist. And then, oh wait, what if somebody in your family actually gets COVID on top? The pressure that everybody was feeling. But here we’re centering the experiences of parents with young children with special health needs. And children with special health needs, many of them have an underlying condition, so that the risk of getting COVID is scary in a different way than people that do not have an underlying health condition. So all of these, this is all of the social milieu of what was happening at the time of our study. So when I think about the real-world impact, I think all of these thoughts lead into, I am grateful that the state of Vermont is paying attention, not just to this issue of suspension and expulsion, but early childhood education more globally, and really trying to figure out what is going to be a better system. And by better, I mean that better meets the needs of Vermonters, of all Vermonters that are seeking to place their child in a safe, fulfilling, nurturing early childhood education system. So yes, it is a really exciting time for the state to be grappling with this question. We had talked a little bit, earlier, about one part of this study that was looking at how other states are addressing this issue. And so obviously, some of our learnings and recommendations to the state of Vermont drew from these other states, Colorado, Arkansas. Thinking about that, what could Vermont be doing differently? Northey: Well, I think our recommendations are really strong. I think they reflect a lot of our findings from the data we collected. I think what impressed me about Arkansas and Colorado, just from a philosophical perspective, was that both adopted these adult change models, right? Where they recognized that adults were the people that were choosing to suspend or expel a child. And so they recognized that the adults were actually kind of the lever of change that could make a difference in the children’s lives. So what they did is they invested in supporting those adults. And so they invested resources and support for educators and families. Like making early childhood mental health consultants more available, having them work with teachers for their own kind of needs as well. Recognizing that that teacher wellbeing is part of how all children in the classroom are going to experience their learning opportunities. It again reinforces why it’s so important to have a well-qualified and well-compensated workforce, but also a well-supported and well-resourced one, right? Like, we need an early childhood system that is well-resourced. We need to know that there are supports available for children that do need them or families that need them. And I think just what they were doing in terms of their focus, of focusing on the adult really reflected what we had seen in the research about educator stress being related to higher rates of suspension and expulsion. And it just was very powerful in thinking about we invest in early childhood opportunities kind of as a country and as states because we want these positive long-term outcomes for individuals, for families, for society. We want parents to be able to work. That being said, we placed a lot of emphasis on teachers and educators and early childhood personnel and professionals in making that investment actually produce those outcomes? And I don’t think we’ve actually invested in the way that we need to. We’ve invested a lot of money thinking about making spots available. Right? We also need to think about investing money into teacher compensation. We need to think about investing in the resources that children and educators might need access to. We need to think about making investments in state capacity, right? Our state leaders are doing incredible work. They are understaffed as well, right? Like we’ve had this expansion of early childhood without really this expansion of these other sections of our system. And so when Colorado and Arkansas talked about really emphasizing the adults and supporting the adults, it made a lot of sense to me. I think it aligned with the research that we found. And I think we can learn a lot from that. In particular, I think also about, we have this fragmented system in Vermont. That means that those teachers have access to different professional development opportunities. That means that those teachers have access to or experienced different requirements about what it takes to work in those settings. And so thinking about how we can support the early child workforce overall and help streamline some of those regulations. If we know that it’s important for a teacher to have a bachelor’s degree and experience in early childhood, shouldn’t all children get a teacher with a bachelor’s degree, right? Like, don’t we want that? So thinking about what it will take to make this system work and to really prevent and maybe even do away with suspension and expulsion entirely is a well-resourced, well-supported system with well-compensated and well-qualified teachers. So yeah, I would say that Arkansas and Colorado, just the philosophy at which they brought to it, that really was evident in all the policies and things that they were doing. Wood: That’s great. And the phrase I’ve heard you use is adult change models, right? That adults are kinda the drivers of these decisions. And I just wanna add a little bit to what you shared that every time I hear you talk about these concepts,I’m reminded of one of the basic tools I was taught. I’m a social psychologist, and so this comes from child development literature, the idea of co-regulation, right? My child is losing his cool because he isn’t getting what he wants or for any number of reasons, right? The best way to calm him down and meet his needs is if I’m calm myself and co-regulate with my child. And when teachers are in the classroom, they’re obviously not the parent to the child, but they are in a parent-like role, right? We’re asking them to role model for children all these different things around socialization and interpersonal connection. And so this child is  having those experiences that are emotionally hard and leading to what we would call unexpected behaviors. We’re asking the teachers really to step in and co-regulate, but it just goes to your point, like they need to be in a place where they can be calm and feel well-supported if we’re going to make that ask of them. Northey: And that co-regulation also needs to happen with the parents, right? So those supports going from family and early care setting, like thinking about how you can have one professional or multiple telling you one set of strategies. This is our team and this is how we’re gonna approach it. We’re gonna give you. Here’s how to become a little less reactive. Here’s how to do this. Like what are the great opportunity to help support that child. And I just wanna say, one of the tensions that’s present in early childhood education is, you said in many ways that the educators are almost acting like parents. Yeah, in a lot of cases, for a lot of children in America, those children’s waking hours are spent with adults outside of their home, right? That’s the reality for a lot of children in America. Wood: Their days are long, right? Like if I’m working nine to five and I have to commute, pre pandemic, I would be dropping off my kids at their early childhood center as early as 7:30 in the morning. I know people that they needed support and childcare as early as 6:00 AM, right? And then I’m picking them at 5:30 or 6:00 at night. So their day is actually bigger than my day. Northey: And you work a traditional day, right? There’s also a whole segment of early care that actually meets parents needs for working overnight shifts. Everybody needs support, but this system needs a little bit more support to get it where we want it to go. Wood: Yeah, great. So I’m gonna move us into our last question. If we could talk pie in the sky, what would love to happen as a result of this study? Northey: *sighs deeply* I would like everyone to have a deeper understanding of how policies affect children and families. I think policies can be wonderful. I love policy. But thinking about how it actually gets implemented? How does it get interpreted? How does it get supported and resourced? And how is it experienced? And that idea that early childhood education plays such an important role in a child’s life that we meet in the functioning of our society, as you have said, now and in the future. When we think about the positive societal returns that are expected we need more data. We need researchers to look at this policy implementation. What is working for which children? You could take a certain lens and really come up with different understandings of how a policy is working, right? If you’re just saying, “Hey, we invested money. These are the child outcome on their third grade test score.” You get one slice of understanding. But if you actually start looking at what’s happening, are all families experiencing that same quality? Are they all experiencing access? Then all of a sudden you start to realize the different perspectives that got missed in that original study, right? And I think that’s something that I really took away from this work. I think especially that idea, we’ve talked a lot in the past few years as a country about how our systems are oppressive. They’re racist. They are designed to maintain and sustain privilege. And the idea that if we wanna disrupt and dismantle those so that we can actually have an equitable system, then we need to look at the people that didn’t make it through the door, or the children that didn’t get to stay in those care situations. And so my takeaway, I would want people to be thinking about, yeah, let’s invest in the workforce and supporting children. And then also, wow, these policies really matter, and how they’re implemented really matter. So we also need to invest in getting more data and getting more research. One of the points that I don’t think I made earlier when we were talking about our recommendation for a data system, the other states that I spoke to, they really talked about how difficult it is to get access to data. Because if you are a pre-K in an elementary school and the state says to you, “Please report your suspension and expulsion numbers.” First of all, you need to have a clear definition. But it is likely that you already have access to whatever that system to report those numbers is because you’re part of the elementary public school system. If you are in a family childcare center, how do you get access to that system? How do you report your numbers? Like are you putting it on a paper airplane and flying it? Like are you emailing it? Who are you emailing it to? What incentive do you have to do so? So the data matters and we need better data and more research. Wood: Absolutely, and I just wanna go back to the piece you’re raising about equity, because I do think there are so many equity issues that are part of this conversation. So I just wanna take a moment to name that my limited understanding of the history of early education and childcare is that one of the reasons people in those fields are under-compensated is because it’s women’s work, right? It’s a field that women gravitate to because stereotypically, women are seen as a nurturer. I thought about going and becoming a teacher, right? Because I do like being around kids. But it has nothing to do with my gender, it’s about who I am as a person, right? But this idea that, oh, well, and then you get into some of the other isms, right? Heterosexism: the idea that, oh, well, a woman. She’s probably married to a man, the man’s the primary breadwinner. So she can, quote, afford to make less money, because she’s not the one that the family’s relying on, this is like secondary income. And that’s just like: a) unfair, and b), that’s part of the dismantling of the system that we’re partly in the throws of. Northey: And I think another, yeah, you said you’re hinting that, women are born with an innate caretaking skill set, we come in knowing how to do it. I think asking anyone with a newborn baby, and they’ll tell you that it’s not the case. But that idea that it might not be something that people associate with needing specific training for. And that’s the other part that we’re trying to say like,”No, actually you do. You need to understand child development. You need to understand how to build a curriculum. You need to.” And that just gets to another part of equity in the system and thinking about, “Okay, we want teachers to have bachelor’s degrees.” Which is something we’ve already committed to in the K-12 system, right? We know that it’s associated with outcomes. That’s what we want. How are we going to get our workforce enrolled in programs that work for them, support them to pursue their, advancing their education if they don’t have it, or getting the training they need, there are equity issues built in almost every part of this system. And I think our quality improvement project hits right in the middle. And it kind of shows, yeah, there’s a lot of things that need attention, but the great news is if you invest here and invest here and invest here, everything will start to get better and then you can invest over. Like there are these — I see it as very hopeful. So I’m hopeful. Wood: I am too, especially given some of the recent moves that have been made regarding policy in Vermont. I will say, from my perspective, if I’m thinking what would I like to see happen as a result of this study, one of the points I alluded to earlier, but I’ll make it more clearly now, is for me this issue as a working parent, so it’s the hat that I’m wearing right now, of a child with a special health need, this sits at a child with a special health needs’ right to a free and appropriate education and a parent’s right to work. I said earlier, working or not, it should be a choice. It shouldn’t be something that, because of a flawed system, that choice is taken away from you. So when I think about that, so these systems have been at the societal level or answer to that question. If a single parent wants to work or dual parent scenario, they both want to work, so we’ve created these early education and childcare systems. So in order to center the equity of those two groups of people where their needs overlap and intersect, then we need a system where every childcare and early educator specialist feels like they have the confidence, knowledge, and support they need to care for a young child with any kind of special health need. So that’s a system I wanna see us building towards too. And that’s when we’ll know we have a system that’s truly inclusive. Northey: Agree with you, kudos. Wood: Great, well, thank you so much for your time today, Dr. Northey. A shout out to our colleague, Dr. Lori Meyer. And as we said, this is an exciting time. So hopefully more to come in this area based on hopefully some joint, additional joint research together. Northey: Yes, I hope so. And if people are wanting to make a difference, Vermont is a state where our legislature right now really would love to hear from you. Contact your elected officials and tell them that this matters. Wood: Fabulous.   Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

https://youtu.be/WJS_1_SagPk On this episode of the podcast, we’re joined by Hannah Gallivan and Kathryn Carroll. Hannah and Kathryn met through the Disability EmpowHER Network mentoring program. As part of the program, Hannah took on research into how to prepare for a disaster when you have a service animal; her research is now part of the Green Mountain Emergency Preparedness Guide. We talk about the EmpowHER Network, leadership and independence, and the value of mentors for people with disabilities, service animal accommodations, and making real world change. Plus accessibility in the theater! A full transcript of the episode appears below. Audrey Homan: I’m Audrey Homan. Welcome to another episode of CDCI Connects, I am here with Hannah Galvin and Katie Carol. And today we’re going to talk about their experiences with disability and mentoring and service, animal outreach, and a bunch of other things. Could I ask each of you to introduce yourselves? Tell us your full name where you’re from, and a little bit about your experience with disability. Hannah, I’m gonna ask you to go first. Hannah Galvan: Yeah. Hi, I’m Hannah Gallivan. I’m from Bristol, Vermont. And I have cerebral palsy and I live with it, and it’s a big part of who I am. So yeah, that’s my experience with it. Katie Carroll: And I’m Katherine Carroll. I go by Katie. I live in Albany, New York. I’m a disabled woman. I happen to be a lawyer. I work in disability and aging services generally. And I was I got to meet Hannah through the Disability and Power Network. Audrey Homan: Can you tell me a little bit more about how the two of you met? Like, how did, how did that, that meeting come about? Did you both sign up for the network? Were you kind of randomly assigned? Did you seek each other out or find each other in some way? Hannah Galvan: So I applied for, We met through Empower Camp which is one of the programs that the Empower Network does among other things. And I applied for what was then, or what is the first year of camp, which is really exciting. Me and the group of other people are the inaugural group, so that’s very exciting. And a friend sent me the application and was like, Hey, I think this would be really cool for you to do. And so during our first part of the program, which when we spent a week together in the Arons, we talked about what our projects would be like, and then we got paired up with mentors. And on my end, I got to write down a couple of people who I would’ve wanted to mentor me and also like what I was looking for in a mentor. And so Katie and I were paired up and we’ve been working together on my product for the last year-ish or so. And yeah, that’s how I met Katie on my side. But if you have anything to add, Katie, go ahead. Katie Carroll: Sure. So I joined, I’m in, I’m very involved with the Disability and Power Network, and I volunteered to be, to work at the camp, but also serve in this mentor role. So it went well beyond the, you know, just the week of camp that we had. And it’s been a pleasure to work with Hannah and have that like mentor-mentee relationship that I think, I mean, it’s the, the purpose of disability and power Network. We recognize the need of youth particularly girls and non-binary folks with disabilities for mentorship. And I, I honestly feel like I’m being mentored. So, Audrey Homan: Hannah, you mentioned that you have been working together with Katie on your project. Can you tell us a little bit about what that project is? Hannah Galvan: Yeah. so as part of the program all of the girls in the program are supposed to have a, like, not, it’s not a super formal project, but just like something they wanna work on regarding disability and disaster preparedness and emergency situations. So during that, we can add around to, as we sort of started brainstorming, and Stephanie, our executive director, was like, When you think about these projects think about something that you’re really interested in and wanna take that sort of lens and how can it relate to like disaster preparedness. So I am really passionate about service animals and actually in the process I’m waiting to get one myself. And I was struck by the fact that you are able to bring your service dog anywhere. But what happens if you’re in an emergency situation and you need to bring your dog to a shelter? So that’s basically where my project stemmed from. And like in a nutshell, it’s, and Katie, if I’m missing anything in my explanation here, you’re free, feel free to chime in. But in a nutshell, it is a project focused on making sure that who work at those emergency shelters are educated around service animals and what they do and making sure that people with disabilities who have those service animals are able to be accommodated and welcomed into those shelters with their animals. Katie Carroll: So, yeah, and you and I, we did a lot of research. We kind of learned about the landscape of what tools and guides and things and information is available to people in Vermont, especially on the internet, you know, where a lot of people go for info information. And you kind of you ended up focusing on what the individual can do, what you know we can do to prepare ourselves. And you ultimately focused on this guide that CDCI was initially a part of. And we went from there. We wanted to improve it, make it acknowledge the role that a service animal may play in someone’s life and what people should think about when, you know, you might have to evacuate your home and go somewhere else. Audrey Homan: So Hannah, what’s the most interesting thing you discovered in your research around service animals and emergency preparedness? Hannah Galvan: That’s a really good question, and my answer would kind of be the opposite of that, which is the most interesting thing I discovered was that there’s not a lot of information out there to begin with. Like a lot of I went into this project just being like, Oh, I’ll do a couple of, at least this was my mindset, I’m not sure about you, Katie. I was like, Oh, I’ll do a couple of Google searches, I’ll find what I need to find, like, it’ll be great. And it ended up, we both sort of went down really big Google rabbit holes trying to find any information that we could about emergency situations and service animals. There was a lot about emergency situations and different links to stuff, but not much pertaining to people with disabilities or, even less pertaining to people with disabilities and service dogs. So for me, I was, that was really interesting because then I really realized how needed this information is, and I’m really happy that I got to be a part of getting it out there to people. And I guess for me, just realizing how much it was needed really made me especially passionate about this project. Katie Carroll: May I answer that question too? Okay. so it was interesting for me, So I’m in New York, like I mentioned, and we’re talking about, you know, improving things in Vermont for Vermonters with disabilities. So it was interesting for me to see what the, the, I guess the lay of the land is in terms of emergency preparedness, like the government entities and who’s involved and what’s called what and whether, you know, regional things versus statewide things. And I guess to Hannah’s point, like there’s information out there, but it can be really confusing and discouraging to disabled folks. When information focuses on companion animals and pets or, you know, makes vague, or not vague, but kind of indefinite statements like, you know, you may be able to bring your service animal with you to a shelter. Well, what does that mean? I may <laugh> like, I’m legally allowed, you know, this is, you know, I’m, you know, I’m legally allowed to bring my service animal with me. It’s like, what are the barriers to that? So I guess it’s more interesting and also not surprising. It was, it was good to do a lot of research. Audrey Homan: This question is for both of you. But do you feel like having this connection through the mentorship changed the way that you approached research for the project or changed what you were able to accomplish in researching the role of service animals and disaster preparedness? Hannah Galvan: Again, really good question. I think for me, I know that it was really helpful knowing that I would have a mentor because like going into it because I was initially like really overwhelmed about like, Oh, this is this project and it can be so broad and about whatever topic I want. And like, I was initially like, how am I gonna do this? Like, I don’t really know where to start. So I think for me, like from the beginning and knowing that I would have a mentor just sort of gotten me through this and give another perspective. And I’ve had meetings with Katie throughout this process and she’s brought up stuff that I wouldn’t have thought about and vice versa. So I think it’s really valuable to like have another perspective especially when you’re doing this work.  I also tend to just like get really overwhelmed in general when I have something going on. And Katie was really good about being like, You’re doing great, Like you’re doing, you’re doing great. So that was really nice. And I think it was, it was like throughout the process of like not finding stuff and just about this really kind of specific topic is really nice to also have my mentor p a disabled woman because we had that unique experience of like sharing that in common. And that was really nice. So, Katie Carroll: So I guess I have two thoughts about in my answer to that question. So yeah, h Hannah has kind of started us on, on one of them, which is knowing to how to like bite off what we can chew <laugh> in terms of like advocacy and what we can change and recognizing that a little can go a long way. So yeah, we didn’t, you know, we didn’t go full on like training people in shelters or anything like that, but we identified a place where, you know, we could get people to think about an additional need you know, as part of their whole emergency, you know, their individual emergency preparedness plan. So yeah, that, I guess that’s something that I guess changed or that we realized along the way. And then another is that we, I guess we have to keep in mind like what, you know, we’ve, we’ve all spent a lot of time thinking about this, but not everyone has the capacity to do that. You know, like we, you know, if we’re living it, talking about it, like we’re a little bit more resourced so we might know where to look for things. And I guess this isn’t so much a change, it’s just like a reminder going through the process of, you know, what, what is just, you know, that a, you know, that person that’s just looking for assistance or information, like what are they gonna find? How confusing is it gonna be? And how do we just, how do we reach that person, not the people who get to think about disability and awareness all the time. Hannah Galvan: Yeah, I would agree with that completely. Audrey Homan: This is a question for Hannah. Hannah, what is one thing that you hope that readers of the Green Mountain Emergency Preparedness Guide take away from your research on service animals during disasters? Is there one particular thing that you hope everyone who sees your research takes away from it? Hannah Galvan: I guess like, I don’t know whether the audience of the title, the, I assume it won’t just be disabled people, but other people in general, if they’re curious just how instrumental service animals are to people and how much misconception and sometimes misinformation is out there about, like, there’s so many different types of service dogs and they all do completely different things. And I think in our society there’s a lot of like not very clear information on what they do and how they’re important. So I would just hope that people really recognize how instrumental they are and like feel a little more educated walking away from reading the guide. My process was, I didn’t edit the whole thing cuz it’s pretty long, but I did add like a service dog page to the already existing format. And then I also added like an FAQ page. So I’m hoping that people will just come away from it having learned something new or recognizing the importance of the work that these animals do because it’s really, really valuable and they help people like myself every day in all of these different ways. So yeah. Okay. Audrey Homan: As someone who doesn’t have a service animal I had not really considered the role of, or the impact of service animals during a disaster. Did you do any, did you find that there was a need for any outreach to people who don’t have service animals to understand how to support people with disabilities who need service animals during a disaster? Hannah Galvan: That is a really good question. I don’t think we didn’t end up asking like specifically people who like didn’t have service animals. We did, you know, we had a meeting with you and a bunch of the other people who worked on the guide. That would’ve been an interesting conversation definitely to have though. I would be curious what the people’s disabled people’s relationships to that is versus if they have a dog versus if they don’t. And whether they would think about it or not or think about like getting one themselves. That’s a really good conversation to have. I would be curious to see what people would say. And like as for people who aren’t to say disabled and know about service dogs, I think there’s a, there’s a saying in like the service dog, or not a saying, but like a phenomenon in the service dog community called Service dog Frog, where people will actually by like service dog vests for their regular pets and like pass them off as like emotional service animals.  Which obviously there are licensed and registered emotional service animals, but a lot of people who don’t actually have a need for them tend to take advantage of that. And so I think it really contributes to the like misinformation around service dogs And there’s been new policies for airlines. They have said like only dogs in the last couple of years or so because people have wanted all of their animals to be with them on a plane. And the airlines were like, Okay, we’re just gonna take docks because this kind of getting out of hand. So that’s a really, it’s a really interesting thing that happens. And I think when you actually are a person with a service dog, it sort of undermines your ability to like walk into a certain business and have obviously the official vest and the paper somewhere, but like, feel like you need to explain yourself because there’s so many existing cases of people who don’t actually need them. So it’s, it’s a really interesting it’s a really interesting thing to think about. And obviously like people obviously have emotional service dogs, but it’s really interesting the fact that people will take advantage of that. Audrey Homan: I’d like to ask the flip side of the question that I just asked, which is Hannah Wall, you were doing research into service animals and disaster preparedness. Did you do a lot of outreach to other people who are involved in the service dog or service animal community? Is this something that, that you are seeing a lot of input on from other people with disabilities? Hannah Galvan: So I didn’t actually, we had thought about reaching out to different organizations who provide service dogs. But then we were talking about it and were like, they probably wouldn’t give away their client information or whatever cuz we were trying to find people who have service dogs in Vermont for a little bit. It would’ve been interesting I think like if I ever do something like this again, it would’ve been interesting to like loop in my service dog organization, they’re called needs and they are in Massachusetts. And I’m sure they would have a really valuable perspective on this sort of work, but I didn’t actually end up getting to talk with some organizations which would’ve been really valuable, Katie Carroll: I guess. Well I, I mean I felt this way, maybe Hannah of felt this way also, but I struggled with the concept of, you know, having feeling like you have to make the case, right? Like there are so many of this type of disabled person and that’s why you need to pay attention. But we know in reality it’s like, well we all have rights. Like even if there’s one person who needs, you know, to bring their service animal with them to a shelter, like this is worth it for them. So, Right. Like Hannah said, we didn’t, we didn’t go down the route of pursuing those numbers. I do think that would be interesting to have, you know, those data sets in the future, getting a sense for how big that population is. It wouldn’t be perfect because people are, you know, permitted by law to train your own service animals. Cause it’s not like you’re necessarily connected to one, you know, trainer organization or another. And so I guess that’s my little call for folks that do, you know, data collection and I guess statistics <laugh>, oh, it would be nice to have that. I guess I’ll plug like some grassroots advocacy being done by this data, D I S D A T A who are trying to, you know, highlight the gaps in disability-related data collection and how can we advocate for better, better information. Audrey Homan: That’s funny because that actually ties into the next question that I had for the two of you, which is Hannah, you specifically mentioned, you know, if you do this again, are you planning on continuing this type of research into service animal acceptance and, and service animal accommodation? Hannah Galvan: I kind of have a layered answer on this. So I don’t know if I would ever do this specific research and work again around emergencies specifically. But I do know like when I do get my service dog I’m gonna do research and I’m gonna like, I want to encourage other disabled people. And my service dog organization actually just, they send out this monthly newsletter and they just announced that they’ve got Walmart to stop selling service dog vests in their stores. Which is a really big deal because a lot of companies like that, like Amazon, like sell them commercially and you can just, you know, buy one. And so I definitely think like I’ll continue like service dog advocacy work in some sense because I will have one at some point. But yeah, I don’t really know. It might, it might really be something I’m passionate about again. And if I do, I will have a lot of interesting information to find out and contact people with. And there’s always more to find out, you know. So if I did do it again, I think it’d be really interesting. Katie Carroll: I’ll just mention another one on the point of like information and data is that it wasn’t immediately, it was actually, I don’t think I found, we found any sources that kind of got at the numbers of people that had been evacuated in Vermont over time. Like that wasn’t easy, I’m, I’m sure it’s out there, but it was not easily accessible. And so we don’t know how many people ended up in a shelter for any reason. But we do know, so I guess thinking about continuing the work in the future you know, Hannah is a very engaged multi-talented active person who does so many things and you’ve got like, so many goals and other things to do. So I guess in your very busy schedule you know, maybe room to do some outreach on getting more people to fill out the workbook and just taking that step. And that’s becoming even more important with the way that like weather is happening today. You know, like, what is, what is gonna drive me out of my house? It’s, it’s gonna be different like later than what it is. You know, like I’m in New York, we had this like big tornado warning recently, which was totally weird. And it’s like, what is happening? And you know, people need to think about that, you know, like, okay, maybe I wasn’t thinking about going, you know, that I might end up in a shelter <laugh> before, but now maybe, maybe probably. So there’s, there’s a lot to be done. Audrey Homan: Absolutely agree with the wackiness around extreme weather and how much it continues to appear, how many more episodes of extreme weather impact all of us. I think this is an evergreen topic that really needs more data, like you said, and more exhaustive guides for how people can deal with the eventuality when it happens rather than, than if. Katie, I wanted to ask you for a second about just turning a little bit to, can you talk about your experiences as a person with disability going into law? I’m, I’ve, I’m really curious about that. Katie Carroll: Sure. So I am legally blind and I’m happy to be called blind. Blind or legally blind is fine with me. Since birth I have albinism and then later in life I realize that I live with anxiety and depression, so now I’m disabled, a disabled woman <laugh> for sure. So I, well, let’s see. Growing up with a disability, I was kind of like introduced to special education, having an IEP, like supports that need to be, be in place in education. And so I noticed, like I notice differences in the way that, you know, I was treated compared to other people. I got connected with the blindness community as a teenager. I’m really, I’m really so grateful for some of the, so there are some blindness advocacy organizations out there. One of them is the National Federation of the Blind. They brought me in, and I met other blind people like, you know, which is really great. And I learned about these, one memory that really stands out for me is learning just how difficult it can be and how inaccessible voting was for people then, and I guess can still be today. And that just, you know, really stuck with me. I, I thought to myself, you know, why, how could that be <laugh>? What, why is that happening? So I was, I had this like I guess anger indignation that I carried with me and I was really interested in learning how different systems how disabled people are affected by all the systems. And I ultimately decided to go to law school. I had a mentor, also a woman with a disability who used her law degree to advise nonprofit organizations in other countries on disability inclusion. I thought, Wow, that’s, that’s amazing. I wanna do that. And I ended up going to law school and you know, did the bar exam and all those things. Which is, and going through that process is like fraught with barriers for disabled people still. It’s, it’s been a little while since I graduated, but I know that barriers still exist and it’s been, I started off in international human rights, did some national-level advocacy and advising organizations moved into the Independent Living network in New York. Now I’m in aging. And it’s been, it’s been a pleasure to be able to see how the law has impacted people, where it falls short, what we can change. And especially now working in, at the intersection of aging and disability, it’s great to think about how we can support people who are both aging with a disability, but also aging into disability and acquiring disability, disability later in life. And a big part of that is getting people to feel comfortable identifying as a disabled person and, you know, maybe not feeling pride today in that fact that, you know, you know, adopting that identity for themselves. So I think I answered your question, <laugh>. Audrey Homan: One of the things you mentioned is that you had a mentor when you were younger. Is that some, is, was that through this same disempower, this same disability empowerment network? Katie Carroll: Actually, no. That was just one of those things that happens. I attended a conference because I was interested in the law, actually, I believe it was the Timbrook disability law symposium that takes place in Baltimore. And I wasn’t, I was completing my undergraduate degree, went met a disabled woman lawyer who said, Hey, come, come intern or work for me. And I was like, Yes, <laugh>, please <laugh>. And that well maybe I’ll email her after this and just say thank you again. But having that was incredibly important for my growth. Audrey Homan: Now, one of the things that folks who are just listening to this episode might not realize is that, at least to me, the two of you seem to be very different in ages. I think Katie, you’re a little bit older than, than Hannah is, so Hannah, you are, you’re in your early twenties maybe. I’m really bad at guessing. Hannah Galvan: I am. I’m about to turn 17 in September, actually. Audrey Homan: So close. Okay. So knowing that has your mentor, has your mentorship relationship with Katie changed how you approach thinking about your future? Hannah Galvan: Yeah, it’s interesting that you say that because like for a lot of my life we talk in the disability community, we talk about independence, independence, independence. And in Empower Camp we also talk about a lot about that. And while it’s really great to have the sense that I can do a ton of things on my own and that I am capable, it’s also like this mentorship has made me like value, really value like getting support from people and how it can be really beneficial to you. I know that when I’m older I’m gonna, you know, go to college and have to have help there. And then when I graduate and live somewhere, I’m gonna have to hire PCAs. And that’s just like a reality that I’m gonna have. And I think this has really helped me understand the balance, at least for me, of like being independent but also recognizing that there’s a lot of awesome people out there who can help you and guide you like Katie has done for me. So yeah, I really appreciate the question cuz it was something I was thinking about Katie Carroll: And I <laugh>, I mean, I strive to be as you know, outwardly as comfortable in my skin as Hannah is. And I appreciate seeing that and that’s why I said I mean, I feel like I’m being mentored. Like I feel like I’m growing just by seeing how Hannah interacts with the world and how you you know, you carry yourself differently. You know, I guess we all, we all come to terms with like disability in our own ways and you know, I’m sure a lot of people struggle with like internalized ableism and, you know, a lot of things have changed, a lot of things have not changed. And so I guess I can say the same for me, like my, I forget the wording of the question, but I feel like yeah, like my future is also shaped by working with Hannah. Hannah Galvan: I appreciate that it’s been, it’s been really nice to have a friendship and a partnership and like someone who has helped me with this awesome project, but also like someone to be like, Hey, I’m freaking out. Like, do you relate <laugh>. So yeah, it’s been really awesome Katie Carroll: For sure. And you asked about age. I was born two years before the ADA was signed, so I guess we’re both technically in the ADA generation. It’s a little weird to me to think that I existed before the law was in place. But you know, still, I guess things were being figured out then. And I will say, I guess part of Hannah, your like your outward your persona, you also I don’t wanna <laugh>, I wanna mention that you, you know, you’re very involved in theater and you love theater and you love performance and I’m sure that’s, that’s a big part of why I get so much out of my relationship with you. Hannah Galvan: Yeah, I am a theatre person at heart 24/7. And I actually would really love to do in my future like advocacy work surrounding theater and people with disabilities because the film and media industry is getting there with the disability representation, but the theater industry, like, especially like Broadway needs a little bit more of a nudge. So I would really, that’s my dream is to help other people with disabilities realize that they can and deserve to be on big stages and tell authentic stories and stuff like that. So I would really love to do that. Audrey Homan: I would love to follow up on with a question about your experiences with the theater and disability. Hannah, where are you seeing that things need to change in theater productions and the theater community? Like what, where, where are some places that really need a push in terms of disability advocacy with the theater? Hannah Galvan: Yeah. I think this is really broad, but I’ll get, I’ll get more narrow, don’t worry. Just people’s mindset in general. I think for Broadway is, Broadway is big. Like Broadway is all about like super big numbers and really emotional songs that like made you cry. I’ve been to, I’ve lucky, I’ve been lucky enough to go to Broadway shows and I always like watch out theater being like, Whoa and I can’t stop talking about it for like two days after because it’s such an emotional and raw and beautiful experience. And, but a lot of the things about the shows are big and they choreography in general, like a lot of the choreography is not like super adaptive and inclusive. And so I would love to like talk to people who work in that space and be like, Hey here’s how you can make your dances adaptive for everybody and everybody can be doing the same thing because because if one person just does it, like it’s not gonna, like, it’s not gonna make a difference. But if people see everybody doing the same dance moves and everybody participating in the fullest extent of who, what they’re doing like that, that’ll make a really big impact. I also think like casting there’s a show called Wicked it’s basically the prequel to Wizard of Oz. So it’s about the friendship between the Good Witch and the Wicked Witch of the west. And the Wicked Witch, her name is up about her sister and is in a wheelchair in the show. And she’s never been played by an actress or actor with a disability. Which, you know, makes for an inauthentic experience and I have a very real love-hate relationship with that show because the music is so good and the story is really good, but that’s the only part that I have a problem with.  So just encouraging people that disabled people are out there and we wanna be hired and there are performers and like also just casting people with disabilities in disabled roles, but also just in roles in general. Cuz we wanna be there. And also like making your stories more inclusive. Like people, people wanna be able to tell a story that feels true to them and not have it be like, Oh my gosh, this character has a disability and that’s their whole entire character up and that’s what they’ll sing about for like 90 minutes while they’re on stage. But like rather has just them as a human being going through the world would be all as we all do. And yeah, I think there’s, so like, I don’t know if you know Ally Stroker, she’s a woman with a disability and she’s actually the first person in the wheelchair to win a Tony Award which is one of the really big awards in theater. And that was a huge deal for me. Like when I saw that YouTube video, I was like, Oh my gosh, like if she did it then so many other people can do it. And she won that award for playing a character in Oklahoma who isn’t disabled in the, in the show. So the fact that she won and won for playing a character who’s like their, who their character, like it’s not about them being disabled and she was just the perfect one for the role and like, that’s why she won. Like, that was such a huge turning point for me. And I hope to inspire like the next generation of people in theater too. Just think a little more inclusively. And there’s so many cool shows happening on Broadway right now and I think we just, we can get there. So yeah, I’m really excited to do that work someday. Audrey Homan: So returning one last time to this this idea of the, the the mentorship experience. Can I ask, what’s been the most surprising thing that the two of you have learned from being in the mentorship relationship? Hannah Galvan: Come on, let’s start Katie. Katie Carroll: Maybe it was not surprising to me, but it might be surprising to other people is that when we talk about the camp experience, I’m sure there are people out there that might assume that the people working at camp are non-disabled folks, but that is not the case. <Laugh> or mentors, the people that go to camp where women and girls and I’m non-binary, people with disabilities and we are in, we’re in these mentor mentee relationships, we provide support and attendant services to each other and you know, maybe people don’t realize that that happens a lot more than they might guess and it’s a lovely thing. Hannah Galvan: Yeah, I would definitely agree with that. It’s really nice to like have people help with your attendance staff and your personal care needs and stuff because sometimes it can be awkward like when you as a disabled person are asking for help and you know, I have a lot of great able body friends who are so cool about it and I’m very lucky. But it’s, it was nice to be in a space where like people could relate to that and you’re able to provide those for each other. And so it like the, the sort of natural awkwardness you sometimes feel is kind of not there, which is really nice. I think, I don’t know, surprising I was just really like surprised that I like accomplished what I did in a year because when you’re starting a thing and they’re like, Oh, you’re doing this for a, you’re, you’re first instinct is like, Oh my gosh, that’s such a long amount of time. I’ll be like, I’m great. And then it’s like, May and you’re like, what? But I feel like with cuz like the scope of the like base for the product is so large and I feel like at first I was really, really intimidated by like trying to find something that I really cared about and narrowing it down enough so that I could actually make change. And I feel like I really did that and it’s, it’s a small part of change, but I hope that people will, you know, open up the guide and find those pages and be like, Hey, I didn’t see this in there before. That’s really cool at this level of representation is in there now. And yeah, I just wanted to, people know that it like is gonna exist now and you can find a more of information about that within the internet, a this.  And yeah, I was just really surprised that like, I guess it’s just hitting me like it’s not a small thing what I accomplished. Like I worked really hard on this, this particular thing and I couldn’t have done it without the support of Katie and all the other people who have helped. But I am really proud of the fact that I like actually made change because I’m an activist in all the senses of just not, not just with people, not just for people with disabilities, but like every other minority group. And I’m a firm believer that you actually go out and do something if you can. So I’m really proud that I actually got to make this concrete change that will now be like out in the world for people to see. Audrey Homan: Thank you for that. I have just one final question for the two of you. You are both disability advocates, you create change in the world. Hannah, you mentioned, you know, you’re an activist. What’s the most important thing that you each have learned through your advocacy with and for the disability community? Hannah Galvan: I’ll start if that’s okay. I think just like realizing that there’s not, like, it’s very easy to feel like there’s not space for you. And it’s very easy to feel like alone and that you’re, that you’re the only one ones within your experience or an experience like it. But like, the fact that it’s hard but like, you have to make space for yourself and that can be really hard cuz you have to stand up to people and be like, Hey, this is an issue I really care about. And like, did you know this? And I think making space for yourself in a world where there’s like 7 billion people is kind of intimidating cuz you’re like, you’re like, why? Like, I deserve this space, but also like, there’s again, 7 billion other people who also deserve space. But especially for me, like, I realized that like if people see me making space for myself, like they’ll realize that they can do it too. And like, it’s so important for everybody to make space for themselves and I think that’s one of the things that I first learned and that sometimes you have to do it on your own and you’ll start and then other people will follow you. Or people will pave the way for you to make space. And it can be scary, but once you make space for yourself and like let it be known that you’re, you’re here, like, it’s, it’s very empowering feeling. So that is probably one of the biggest things that I’ve, I’ve learned and tried to put into practice during this work. Katie Carroll: And I’ll just add for me, so there, there, I mean there are so many things that I could answer with, but one that’s on my mind lately is just the importance of hearing and seeing, seeing each other and, and hearing each other’s stories and like how we got to where we are and what your experience has been. And through, through that, you know, coming to a point where we can work together you know, when you’re part of a campaign or you’re just trying to, you know, change a system, change a law, change a policy, you know, affect the right person we, we might end up spending less time hearing from other individuals or base building, you know, reaching out to other people that haven’t had the opportunity to, to share or to, you know, advocate or anything like that. So I think that’s been on my mind. And I think I have a question to add for Hannah. So I don’t wanna forget that, you know, a big part of this is like about your transition to independence and adulthood and so I guess I would like to hear from you like, what would your message be to parents with future Empower camp attendees? So like class of 2023, what, like, what do you want other parents to know who are thinking about, you know, their, their kid, their child well and, and guardians as well? Parents and guardians I should say. You know, who are, you know, at probably at different points in how they support their their disabled kid. Hannah Galvan: Yeah. I think it’s really interesting because for me, with my parents they breezed me from the beginning. And they, they always said to me, I remember them always saying like, never think that you can’t do something. Like you can try something and it might not work out for you or you might not love it or it, you might not do it the same way as other people, but there’s other ways that you can do it, and will like help you do that. So I grew up very much with the mindset of like, I’m, things are open to me, like even if I don’t think that they’re possible for myself. And I’m so grateful to my parents for that because I think not all people with disabilities have that or grew up having that. I think I just remember really clearly my first day at this camp I do called Zino Mountain Farm there in Lincoln, Vermont. And I am actually going there this summer for two weeks and I’ve been going since I was about seven years old. And it’s a community of people with and without disabilities and we are all on an equal playing field and we all just hang out and be in that space with each other and it’s like honestly a really magical space to be in. But I just remember very clearly my parents like dropping me off and because I was so young, I only stayed for the day. Like I live, I’m very lucky to live like 15 minutes away. So I would only, I would stay for the day when I first started and now I stay over in the cabins. But I remember my parents like giving the people all my stuff and being like, Okay, like don’t forget like this. So you put on her orthotics and like, she needs to be helped with this and then this and this. And the people at Zino were like, Okay, she’s gonna be fine. Like, we’re, we’ve got her. And so my parents left and I imagine they were a little bit like okay, like we’re leaving Hannah with these like older strangers essentially, and like how is she gonna fair and is she gonna be okay? And but I feel like Empower is for me and like seeing them sort of, I don’t know if this is a corny word, but like seeing them sort of evolve made me a lot more comfortable being like after that being like them, they noticed that I was able to, I was fine. Like I had so much fun and they sort of realized that I would be okay. And like even now I’ll still be like, I’ll still stress about things and I’ll still like, oh, like I wanna talk to this person about what support I’m gonna have and that sort of thing. But I think for my parents like it’s made me a lot more confident like telling them like, Hey, I can actually do this on my own, like, and I’ll ask you if I need help when I really appreciate it, but I can also, but I’m also gonna try to do this on my own. And I think that’s kind of hard when you’re a kid and especially if your parents, like you’re a child of like parents who are able bodied and just like want the best for you. And when you were young, like they heard that you had a disability and they, you know, you never wanna see your child struggle. And I think it’s hard for them at first to like know that I would move around the world differently and it wouldn’t always be easy, but I think me being able to get to a place where I could tell them like, Hey, I know this is scary for me and it’s probably scary for you, but like I can do it. Like, and if I’m not fine, like I’ll call you. Like, like I recently went to a leadership conference and I was really nervous about it cause I was the only person there with a disability and I was like, Oh my gosh, like, who’s gonna help me? Like, is this gonna be okay? And we were on a college campus and that was really wild and really cool and I ended up having such a good time and my parents were like, I know you’ll be great and if you’re not, like, call us. And I texted my mom every day and I was like, I’m doing great, I’m having a great time. So anyway, really long-winded answer, but I would just say like, it’s really hard to give your kid like independence and it’s really hard to like imagine them away from you and like, are they gonna be okay? But I think it’s so empowering for like your kid to know that their parents support them or their guardians support them in what they do. And they, they understand that you’re gonna be an independent human one day and they’re helping you along on that journey and they trust you to be okay with other people and like letting them know that you think that they’re capable is such a big thing. So yeah, I would just say like trust that you know what’s best for each other and trust that like people are gonna do what they want to do and they wouldn’t do it if they felt like they were gonna be like unsafe or anything. But like empowering your kid, especially a kid with a disability is so important. So Katie Carroll: You inspired me to modify my answer to the last question. Hearing you talk about seeing your, your parents change and you change and things like that and on, so being an advocate or an advocate, activist or really any, you know, anything, whatever you’re doing, it’s important to have goals and that’s something that I’ve learned in advocacy, having really clear goals and then an assessment process to see where you are in reaching those goals. Hannah, well actually both of us, we had to do assessments before and after camp. We’ve had to, you know, justify like <laugh> the process, you know, where, where like how far we’ve come and why and what are the challenges and it’s important to do that and like in all areas of life. And it’s okay if we end up not liking something or it doesn’t work out, but at least you can see, you know, that you tried something, you know why it happened the way that it happened. And so that’s my answer and I’m sticking to it. Hannah Galvan: Yeah, I would also, if it’s okay, I’m gonna like add something to that. Like and if, like, if you have a goal and you’re like working toward it, but you’re realizing like you’re not, you’re like, you gave yourself a specific amount of time and you’re like at that amount of time and you realize you haven’t completed it all the way or whatever, like, that’s okay because you were working toward it and like you can just, you can modify it, you can do something else entirely. Like life isn’t supposed to be all figured out all the time. So like, it’s good to have, of course it’s good to have clear goals and like I’ve had a really specific theme of like what I wanna do for a while now, but like, I don’t know, like who knows? Like, I don’t know where I’ll be for college. Like I don’t know where I’ll be in the world in like four years, like, I don’t know. So it’s, you also don’t have to have all your stuff together all the time. Audrey Homan: You don’t have to have all your stuff together all the time is a fabulous motto to live by and something I’m definitely going to take away from this conversation, which I have enjoyed so very much. Katie Carroll and Hannah Galvin, thank you so much for coming on our podcast and talking about so many different topics and experiences. This has been phenomenal and I wish you both the best of luck with your upcoming endeavors. Hannah Galvan: Thank you for having me. Katie Carroll: Thank you.   Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

On supporting employment for people on the autism spectrum https://youtu.be/mB0d8xA5Fls   On this episode of the podcast, CDCI Research Assistant Professor Bryan Dague is joined by Alan Kurtz, PhD, and Nicole LeBlanc. Dr. Kurtz is a long-time researcher in employment issues for people on the autism spectrum. LeBlanc is a self-advocate, on the autism spectrum, who brings her lived experience of finding employment to the discussion. And Dr. Dague is also the project coordinator of the Supported Employment project at CDCI. Bryan Dague: All right. well, I’ll start by introducing myself. Hi, I’m Bryan Dague. I’m with the University of Vermont Center on Disability and Community and Inclusion. I’m welcoming Alan Kurtz and Nicole LeBlanc. Could you guys introduce yourselves? And our topic today is supporting employment for people on the autism spectrum. So, Alan, why don’t you start? Alan Kurtz: Okay. My name is Alan Kurtz. I’m a former special educator. I worked in adult services in Vermont. I’ve worked at the Center for Community Inclusion and Disability Studies at the University of Maine for the last 28 years, and worked on a number of projects related to employment. And one on transition for students on the autism spectrum. I got my PhD in autism education from the University of New Hampshire. Bryan: Great. Thanks. Nicole? Nicole LeBlanc: Hi, Nicole LeBlanc. I live in Silver Springs, Maryland. I’m on the autism spectrum. And I wear gazillion hats. I’m the coordinator for the National Center on Advancing Person-Centered Practices and Systems (NCAPPS), and I do a number of other little gigs. I’m a policy wonk. Disability employment policy is one of my specialties. I’m the author — read the book – of Disability Employment Policy 101 and Why Employment Matters. Alan: And I just wanted to mention, I have a brother on the autism spectrum, in Pennsylvania. Bryan: Thank you. And you both did an excellent training for us (video) on supporting employment. But before we get into the questions, I just wanted you to address the issue of sort of identity and labels. Cause that’s kind of been changing over the years. We always used to use, you know, the person-first language and say, you know, person with autism. But that’s been changing more recently. So could you address that before we get started? Nicole: Hmm. Well, let’s see. The autism world, you know — some parts of the autism world have, you know, have embraced identity-first language, you know. “Cultural identity”, you know. “Autistic person”, “Aspie”. Then of course you got the, “high functioning”, “low functioning”. Alan: Yeah. And I think it’s really, it’s been kind of controversial. Nicole: Uh huh, especially when you look at registry. When you look at the words like “high functioning”, “low functioning”. Those words, those terms, are actually more harmful than they are. Because they’re basically terms used to deny people with autism who have higher IQs support services. I think studies have shown people that get the label of “low functioning” in some cases, they have better adaptive functioning than people that are high functioning, who often have poor adaptive functioning and greater mental health issues. Alan: I think, you know, specifically what you were addressing, Bryan, is that there’s a tendency within the neurodiversity community to use identity lang identity first language and say, I’m autistic, or, you know, I, I have an autistic brother, and there are others who are sticking with the person first language in saying I’m a person on the autism spectrum, or I, I have a friend who’s on the autism spectrum, and I sort of go back and forth with it. and I know I, I, in most cases, I think, you know, I leave it up to the individual, how, how do you wanna be referred to Bryan: Mm-hmm. Yeah. I’ve noticed lately it seems more kind of similar to the Deaf culture, how they look at being Deaf or hard of hearing as part of their, their culture and language and part of who they are. They don’t see that as a disability. And it seems similar that a lot of folks in the autistic community are kind of adopting that philosophy as well. Would you agree with that, Nicole? Nicole: Yeah, somewhat. Bryan: Yeah. Talk more. Nicole: <laugh>. Somewhat, you know, particularly, you know, and I think a good check of that. Some of it, you know, the, you know, the people that are away from, you know, the idd who don’t have the IDD label, you know, there’s many people out there with autism that have doctorate degrees. PhDs. Bryan: Great. Thank you. So we wanna talk about employment. You know, employment’s really crucial for everybody. And we’re all in the field of helping people with disabilities to find employment. So what, in each of your opinions is the most important thing for people to know about supporting employment for people on the autism spectrum? Nicole: Customer-focused job development. Develop and carve jobs based on strength. You know, particularly don’t just stick people on any job. Like, one thing people, especially in jobs that have higher social skills, they’re more likely to require, you know, customer service skills. That’s, for example, one area that people with autism can often struggle in. You know, figure out ways to get people informational interviews. You know, job carving — carving the job to fit the person, not the other way around. You know, I think providing long term job coaching is something that the VR system doesn’t really do much of beyond 90 days to succeed in employment when it comes to support. Alan: For me, I think the most important thing is that employers, I think, support agencies need to realize that people with ASD (autism spectrum disorder) can be really valuable employees. That they tend to bring a lot of characteristics to a job that can be really valuable to an employer. A lot of people on the autism spectrum are very methodical and conscientious in carrying out their job duties. They often perform work of very high quality. People are often very dependable. They’re punctual and tend to be very consistent in the way they work. So I think you know, it’s really important for people to understand that. I think also customized employment can be really valuable for people on the autism spectrum. I think carving jobs out that really focus on people’s skills or you know, looking at specific tasks that they can perform can be really valuable both for the employee and the employer the same time. It’s important to recognize that everybody needs some variety in their work, and, you know, while people tend to — they can be really focused, I think over time people on the autism spectrum can really perform well in jobs that require a lot of different skills and require them to do a lot of different tasks. Bryan: Yeah. I’ve noticed more recently, a lot more news stories of employers that are recognizing and actually seeking out people on the autism spectrum. You know, given what you said, Alan, that they do have specific talents and attributes that, that they find really helpful– Nicole: Especially given the work shortage. Bryan: That’s true. Yeah. Alan: I think that’s really a good point, Nicole. Nicole: Yeah, like, you know, like when I went to the Anchor conference, people talked about community knowledge that, you know, closing off immigrants is what’s causing this DSP (direct support providr) crisis. Alan: Yeah. Nicole: Have high expectations. Embrace dignity of risk, Presume confidence, don’t assume what a person can or cannot do. Bryan: Thank you. So what have you found to be the most challenging aspect of supporting you know, folks on the autism spectrum and employment? Alan: I think one of the biggest obstacles are some of the assumptions that people bring into it. And those assumptions are things like people need to work alone, or that they, you know, they have difficulty working around other people. The assumption that people are going to require a lot of extra training and support. And some people certainly are going to require a lot of extra training and maybe some additional support from VR or from an agency. But I think we often find that people don’t require about as much training as other people do. Of course that’s not always the case. But yeah, I think the, the attitudes about what autism is and the assumptions people make and where they go with that often, they may have somebody working in isolation, you know, doing the same task over and over again. and it’s, it’s important to recognize, you know, the great diversity that exists within the autism spectrum. Nicole: And now everybody just wants to stamp envelopes Alan: <laugh>. Right. Good point. Nicole: You know, other barriers: lack of job coaching, lack of home- and community-based services for people who don’t have an intellectual disability, like in my case. You know, VR doesn’t provide support beyond 90 days. Alan: Mm-hmm. And sometimes people need that support that goes beyond Nicole: Mm-hmm. Transit, transportation. Alan: Yeah. Nicole: Then of course, you’ve  got public benefit fears when you bring, bring in family dynamics. Alan: Mm-hmm. Bryan: One thing I’ve noticed is just sort of the role of self-disclosure in terms of employment support. Can you address that in just terms of how you might disclose? Or what you need to say or what an employer might need to know? Nicole: Yeah. Just yeah, tell them, you know, you’re on to the spectrum. You have a disability, you know. Talk about your support needs and if need be, you know, do it with a job coach or VR counselor or a support person to help in negotiating accommodations. Bryan: Mm-hmm. Alan: And I, I think that a lot of people I’ve known have been at times very reluctant to self disclose. you know, they’re afraid that people are gonna think badly of them because they say they have autism Nicole: Mm-hmm. <affirmative> stigma. And, Alan: And one of the problems is when people are reluctant to do that well. I mean, one of the advantages is that people aren’t bringing their preconceptions about what autism is into the work setting. But at the same time, it’s tough for people to get the accommodations they need. And I think of one young man I knew who went to college, and he decided, you know, I’m not going to tell people, you know, I have autism. And he didn’t get the accommodations he needed, and he really struggled his freshman year. But after that, when he did disclose, he got the supports that he needed and the accommodations that he needed. He did really well and ultimately went on to have a very successful career. Nicole: Mm-hmm. And that’s definitely gonna be important, especially going forward, as you know, we figure out whatever this new normal is. Like, I know people that are already being told, “Oh, you can’t stay remote. You need to go back to an office.” And I know one person who’s fighting that. Bryan: Yeah. Thanks for addressing that. And I like the way you phrase that too with that. Nicole: Yeah. When we look at a return to normal, if it excludes people with disabilities… Huh. Bryan: But phrasing it up as having support needs and accommodations, you know, it’s not so much about the disability. And I’ve seen that with other, just sort of invisible disabilities. Sometimes there’s a reluctance to disclose. But then, they’re not gonna get their support needs met. Nicole: There’s the stigma. “Oh, what is so and so gonna think of me if I say, ‘Oh, I’m not this.’  You know, autism is slowly becoming to have less stigma than say, bipolar. Yeah. Makes sense. Here’s a history of mental health issues, where it’s always been something hushed. “We don’t talk about that.” Yeah. You know, if this pandemic, you know, makes anything clear, it’s time for disability and mental health to stop being a hush-hush, shove-it-under-the-rug type topic. Bryan: Yeah. And I think things like we just got through April, and that’s autism — either awareness or acceptance — month. And I think it’s just getting a lot more attention, people learning more about it. So, you know, I think it’s becoming less stigmatizing and people are more open to self-disclosing. I’m just a firm believer in self-disclosing in order to get those support needs met. And like your example, Alan: if they’re not disclosing and they have those needs, they’re not gonna get met and they’re not gonna be successful. Alan: I think it’s true. And Nicole, you brought that up about stigma. I think stigma around autism is really decreasing. I remember when family members, you know, the last thing they’d want to hear is, you know, their child had a diagnosis of autism. Nicole: And then nowadays, you know, we don’t think of it as like… You know, when I first got diagnosed with autism at 21, I thought, “Okay, that’s a boy thing.” Okay? Somebody flapping, banging their head against the wall. That’s the first thing that came to mind when I first heard that word. I’m like, “Isn’t that a boy disability, not a girl thing?” And then shortly during my twenties, you know, during the job cohort, I started reading up and I’m like, wow, this actually makes sense. Yeah. When I look back, every other diagnosis never really made sense. Bryan: Thanks. Okay. So what’s one piece of advice you would give to employers to help them to be more supportive? Nicole: Provide job coaching, You know, provide extra support. Like if we’re in the nonprofit world, you know, editing documents. Help with editing. Editing PowerPoints, you know, that’s one thing, area where in my case, you know, I need a lot of support in. Bryan: But what would you like employers to know? What advice would you give employers, Nicole? Nicole: You know, hiring people with autism and other disabilities is worth it. We will reduce your hiring and training costs. Lower turnover, you know?Diversity is what makes the world great. Honesty, dependability, productivity, the ability to narrow focus, just focus on the task at hand and not worry about all the other nonsense and goofing off and all that. Bryan: Thanks. Alan, what advice would you give? Alan: I think it’s important to understand what kind of supports work generally for people on the autism spectrum. But I also think, probably more importantly, it’s important to understand specifically what kind of supports work for an individual employee. What kind of environment does the person thrive in? Nicole: Person-centered. Yeah. Employment support needs to be person-centered. It’s not okay to “you fit the system”, you know. The system needs to fit you. Alan: I think in general — again, I emphasize “in general”, because there’s always exceptions — people on the autism spectrum are incredibly diverse. But I think in general, it’s important to be very direct and concrete in your communication with an employee. I think it’s really good to use schedules and organizers to help the person– Nicole: Structure predictability. Alan: Yeah. Yeah. Nicole: And [being] calm, cool, collected <laugh>. You know, when it comes to management styles, especially, you know, with dealing with anxiety, uncertainty, like, the world we’re currently in, you know, be somebody who can help somebody calm down when chaos occurs. Alan: I think it’s really important. Another thing I think it’s really important for employers to know is that sometimes people don’t do so well with downtime. So it’s important to help the person understand what to do if there’s downtime, if they’re not busy at any given moment. And in general, I think, you know, understanding the kind of environment that’s gonna work best for a person. A person might have particular sensory needs or, you know, they may overreact at certain sensory stimuli — sounds or things that they see — and that can really get in the way of a person being successful and being comfortable on a job. And, you know, it may look as though the person, you know, isn’t motivated or you know, they’re not listening, they’re not paying attention. In fact, it can be that those sensory things can be overwhelming and make it really difficult for the person to succeed. Bryan: Yeah. When we talk about supported employment you know, the first part of that is that discovery process of really getting to know the person. And what we talk about is the ideal conditions of employment and sort of what is the best environment for that person. I know in my training, I use a video, and they talk about just sort of structuring the workplace. They have some great examples of like, you know, one young man who just didn’t like being close to other people and they sort of physically set the workplace up so that people wouldn’t get too close to him. Just sort of had some physical barrier. So you know, once they did that, it was successful for him. Nicole: Mm-hmm. And, when you figure out the environment, you know, a person is more or less disabled based on their interaction within the environment. Like, you know, some people may, you know, [want to be] out in the back room. Others may be interfacing with the public. Bryan: Right. Exactly. Nicole: So, like, my sister who, who works in drtail, often when it comes to produce, she’s in the back. Bryan: So what’s one piece of advice you would give people on the autism spectrum in terms of helping them to navigate employment? Nicole: Dream big. Go for your dreams. You know, find allies who support you. Take advantage of secondary re-education programs like Think College, or the Succeed program, the LEND Program, leadership education, neuro-developmental disabilities, funded by the Autism Cares Act. Do informational interviews, go to conferences, network, be a broken record. Especially networking. Find people who can figure out ways to get you into the back door. Especially when you factor in, you know, interviewing isn’t always, you know, the most ideal. We often do better, you know, “Okay, here’s a list of okay, you know, my articles.” Or selling your work samples here. Toolkit on this, toolkit on that. Bryan: Mm-hmm. Yeah. Nicole, you mentioned interviewing, and I know more people are using the concept of video resumes. Because they might not really interview well but then they can videotape them doing certain jobs and tasks and kind of, you know, do showing rather than telling what their skills are. Nicole: Mm-hmm. Soft skills are often more challenging for us compared to hard skills. Alan: I think the one piece of advice I would give is maybe more than one piece of advice. That’s trying to equip few things in here. But I think it’s important to look at the environment for different jobs. You know, is it sensory-friendly? But I think first it may be it’s important to recognize what your skills are and what your needs are and what might be a good job match for you. It’s important to look at the sensory characteristics of the job: what kind of skills are needed, what kind of skills you need to learn to do it. And I think it’s really helpful to do that with other people. Bryan, you mentioned the discovery process, I think. Person-centered planning. We had a project that we called Family-Centered Transition Planning, where we had a series of person-centered planning meetings. And I think getting a lot of people together who know a person well, and know what kind of supports they need, what works for them in different environments can be really valuable. And I mean, just building on existing relationships can be really helpful. When we get people together and we talk about possibilities, people know people who you know, they may be able to contact and help them get a job. I think of one person in particular who was in our transition project. We had a person-centered planning meeting and we’re talking about job possibilities, he was very interested in cooking. And we identified a local colleague that had a great program, a food service program, and he was able to get a paid internship with them. And it all came about as a group of people who cared about the person and who knew the person well. Got together and thought about, you know, where can this person find a job or get experience in a job that’s going to really work for him. I think another person who, you know his high school friends came to him and said, “We’re working for this company. We think you would be good there.” And he went and found a job there himself. So I guess the big thing for me, is working as a team: working with family members, working with friends, working with professionals, to really come up with a job match that’s going to work for the person. Bryan: Yeah, I definitely agree with that. I’ve been a participant in person-centered planning processes, like BS and things like that. And you’re right, the team is so valuable because if it’s just you, you only have your perspective. But then you gather your family and friends and people who know you well, they can really add to that. And, you know, I agree there’s a lot of value in that process. What aspect of supporting employment do you think employers would find most surprising or informative? Alan: I can jump in, Nicole. Unless you wanna go for it. Nicole: Yeah, you can go answer that first. Alan: I think in addition to the fact that people on the autism spectrum can be great employees (which I think a lot of people don’t necessarily understand to begin with) one of the things that people may find surprising is that people on the autism spectrum can participate fully in the social life of the workplace. Or they can often do that. There’s a tendency for people to think that people with autism need to work alone or need to work in isolation. And I think, you know, we really need to figure out what kind of supports work for the person so that they can interact with their coworkers and feel like they belong. Yeah. Because we know that one of the biggest things is money is not the same as inclusion. One of the things that gets in the way of successful employment often for people on the autism spectrum is difficulties with social interaction. And we’ve often tried to teach those skills and, you know, that can be really helpful on the job, especially if we focus on those specific social skills that a person needs to learn at that job. And to understand the workplace culture. I think that’s really important. We can tell people, you know, “These are the rules.” People often do well when things are put in terms of rules. They understand this is exactly what I’m supposed to do in this situation. So i think teaching those skills can be really important. But I think also we need to focus on the social environment itself and not just the person. You know, finding people who can be mentors for the person. Nicole: Especially, you know, that can be a mentor around specific job skills and a task. Somebody who can be a natural support. Alan: Oh yeah, exactly. A natural support who can help the person navigate the social environment and learn to give the person useful feedback. And I think that’s where support agencies can come in. They can work with people and they can work with employers to help them develop the skills that they need to support successful interaction. Nicole, anything to add on that? Nicole: Yeah. Take part in self advocacy groups, self advocacy organizations, peer run employment programs where you can learn basic skills. You know: how to be assertive in the workplace. Like, the higher up curriculum. Peer mentoring, finding role models. Alan: So Nicole, what do you think people who do hire people on the autism spectrum, what do you think they find most surprising once they hire someone? Nicole: I don’t know. Hyperfocus? Or people can hyperfocus. Narrow focus, boom. Alan: Yeah, yeah. Nicole: That, honestly. Or you know, punctuality. Like me, I’m the exact opposite of my sister. Megan is always late all the time. With me, I’m Miss Punctuality. Employers like that. Like, if there’s a [Capitol] Hill visit, you know, I’m always the first one. Okay. I’m always like, “Leave an hour and a half: one half to take public transit, leave an hour and a half get there.” To the whatever policy meeting before everyone else. Alan: I’m the same way, Nicole. Nicole: To be early is to be on time is the slogan down here. Bryan: <laugh> Alan: Being late, the possibility of being late makes me really anxious. Nicole: Uh huh, same here. I’m with you. Like me, like me, like, for example, you know, like my sister Megan, and she’s always, you know, late to work late. Everything. She’s always like, you know, come on, chop CHOP’s. Go, let’s get outta here. Quit, pull around. And of the Megan Shy, he’s ly anxious, he’s had depression anxiety during high school years. You look at both of us, were like the exact opposite in some ways. Bryan: In my experience, what I think employers find surprising is, initially they might have some skepticism about hiring somebody with a disability, but once they do, I think they’re often maybe surprised that they can be a good worker. But I think what surprises them the most is just sort of the value added that they bring to the workplace. You know? Because they bring their own personality and characteristics and things like that. Nicole: Sometimes we also come with our own health insurance: Medicaid, buy-in… Bryan: <laugh>, right? but I think employers, you know, find that surprising that it, it really just adds to the workplace in, in many ways, you know, besides just their productivity. Alan: We’re not asking the employer to be charitable when we ask them to hire a person. Yep. Nicole: Yeah. Diversity is great, great for business. It can boost productivity and boost your bottom line. Bryan: That’s right. Yeah. Nicole: We’re seen nowadays with all the shortages. Alan: There’s a large multinational corporation that does like, cloud-based, I don’t know — technology? I’ve gotten to know some people there in the past year. They’ve decided that having a diverse workforce is really going to strengthen their company. And part of that diversity is neurodiversity. They have a lot of people on the autism spectrum who they’ve hired, and it really benefits their organization pretty dramatically. Bryan: That’s great. Yeah. More, more companies need to know that. Mm-hmm. All right. Well, any final words as we finish up here, Nicole? Nicole: Well… embrace autism. Autism is amazingly unique. Totally interesting, sometimes mysterious, you know. Bryan: Well said. Nicole: Diversity is great for business, and it’s important nowadays. With all this talk about diversity, equity, inclusion, [it’s important] that autism and disability be at the table. Especially in the nonprofit social service sector. Bryan: You’re exactly right. Nicole: Writer agency should be hiring people with disabilities that peer mentors. Bryan: Great. Thank you. Alan, any departing words? Alan: Just: I’ve always been amazed in situations I’ve been involved with where, how successful people have been, you know, with just a little bit of support. Usually, some people require more ongoing and intense supports, but– Nicole: When you’ve met one person with autism, you’ve met one person with autism. Alan: Yeah, Yeah. Nicole: You know, we’re not a puzzle, you know? We’re not a puzzle piece to be solved. Even though many of us at times may think in puzzles, we can predict trends, you know, honestly, predicting trends. Like, for instance, I’ve predicted, you know, all like, you know, I’ve, like when CDC guidance, you know, made decisions like black mass un predicted, you know, seeing the trend that I can predict, Okay, that’s gonna result in this surge, that surge told you that was common. Bryan: Mm-hmm. <affirmative>. Alan: Yeah. So I think that’s a really good example of, you know you know, someone on the autism spectrum, bringing some, you know, you know, needed skills to a job and valuable skills. And, you know, we just, you know, more employers need to learn just how valuable that employees on the autism spectrum can be to their, their businesses. Bryan: Great. I agree. Well, thank you both for the amazing training that you did for us and for this podcast. Nicole: Yeah, that was all the feedback that you got. Bryan: It’s been very good <laugh>. So thank you both so much. Alan: Okay. Thank you. Bryan: All right. Take care. Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

https://youtu.be/CcGzCVBLtwc “I think the biggest thing is for people who don’t understand disability, especially invisible disabilities, to try to listen to those who are struggling and take it upon yourself to learn, rather than saying ‘Oh yeah I have that too’.” On this episode of the podcast, CDCI business manager Rachel Cronin sits down with her stepmother, Melissa Cronin, as they talk disability. Melissa Cronin is an author and journalist based in Vermont. Before she sustained a traumatic brain injury in 2003, she was also a neonatal intensive care nurse. The two talk about struggling with the idea of who qualifies as “disabled”, especially when it comes to your own identity, along with Melissa’s experiences of having an invisible disability, and how that’s shaped her post-accident identity. A full transcript appears below. Rachel Cronin: Welcome to the podcast, CDCI Connects. My name is Rachel Cronin and I am the finance manager and HR manager here at the Center on Disability and Community Inclusion at UVM. And my guest today is Melissa Cronin. Melissa is a writer and author whose work has been published in the Washington Post and USA Today, among many other places. She’s also a musician and an avid gardener and an impressive contributor to our family’s karaoke nights <laugh>. Melissa Cronin: <laugh> Great. Rachel Cronin: She also happens to be my stepmother. Melissa, welcome to the podcast. Melissa Cronin: Thank you. Rachel Cronin: <laugh>. I’m so excited to have you! Melissa Cronin: <laugh>. Rachel Cronin: So CDCI Connects is a way for us at CDCI to be in conversation with people in the disability community. So the first thing I wanna ask you is just to tell us a little bit about yourself, but maybe through the framework of what is your relationship to disability? Melissa Cronin: Well it is the result of a traumatic brain injury that I sustained, was it 18 years ago now? And so that’s how I entered the disability world. And it wasn’t till three years after my injury that I was diagnosed with a brain injury. So the initial stages of it, I didn’t think about it in terms of disability. And it wasn’t until after I was diagnosed and then after…how do I say this? Disability, it’s funny, you know, I think of the term “disability” as something that’s coined through social security. Like it’s a term to qualify. And so until I officially was told that “I am disabled,” prior to that it was kind of a gray area, but now, once it was kind of official on paper <laugh>, it’s become more real. So I can say, yes, I have a disability. But that’s how it came about. My brain injury and having issues with PTSD. So that’s, does that answer? Rachel Cronin: Yeah, sure. I mean, I think a lot of people deal with disability in that way where they’re thinking you have to qualify for a certain level of benefits, right? And like you have to fit to a specific diagnosis or you have to fit to a specific definition of what it is. But so for you, you sustained an injury, which, later on, was determined to be a traumatic brain injury. And it sounds like you have been sort of like not sure if that’s a term you would use to identify yourself with, like… Melissa Cronin: Right. Rachel Cronin: Would you identify as a person with a disability, or do you feel like that’s not a term you would apply to yourself? Melissa Cronin: I do, I do now. Yes. I think it took some time to come around to that, even though, like I said, on paper, you’re considered disabled. At first, it was like “Hmm,” you know? I think it was a denial kind of process. And also I think because, how do I say this? A lot of people have said to me, “Wow, you look great,” or “You don’t, you never look like you were hit by a car,” which is how my brain injury came about. So I would translate that to mean, “Well, am I making this up? Maybe this isn’t real?” So I struggled with that. But I do now, over the past several years, it took a while to come around to this. But I do, yes, identify with the disability community, and I do have a disability. As much as I sometimes choose not to talk about it, depending on the circumstances, especially with potential employment or in situations that it might mean that I’m excluded from something Rachel Cronin: Mm-hmm. <affirmative>. Melissa Cronin: So I think there’s still that denial. Like, “Oh, I can do this” and “Well, maybe I shouldn’t,” or, I’ll give it a try, and if I fail, so what? But I’m also hesitant to fail <laugh> and to experience the failure. Rachel Cronin: Right, right. Well, I mean there’s like a lot going on there. I can relate to that so much. The idea of when you have sort of like an invisible disability, which I mean <laugh> I don’t know, I have a chronic illness, right? Like I have an autoimmune disorder, which has a lot of effects, but it is sort of an invisible illness that people don’t see. And so that’s sort of like tension between wanting to advocate for yourself, but also feeling like you don’t necessarily “deserve” that sort of attention. Melissa Cronin: Right. Rachel Cronin: You know, there’s some tension in that. Melissa Cronin: Yeah. Yeah. That’s the real hard part of it all. When things come up, certain things, whether it might be a workplace accommodation or when I went back to school years ago to get my masters, it took a lot of pushing and encouragement from my therapist saying, “let them know your issues.” And I didn’t want to because I felt like, “well, maybe I’m overthinking it,” or “I don’t want them to think I can’t do this or I won’t succeed.” Rachel Cronin: You didn’t wanna be judged basically. Right. Yeah. Or again, you know, looking at me and thinking, well, really, I never would’ve guessed so that’s hard, you know? Rachel Cronin: Yeah. Melissa Cronin: I think sometimes it still is, but not as much as it used to be. I think I’ve gotten better about it. Not always, but I think, yeah. Rachel Cronin: Yeah. You talked about going back to get your master’s degree, which was how many years ago was it that you got your master’s? Melissa Cronin: So I finished in January of 2013. Rachel Cronin: Right. Melissa Cronin: So nine, a little over nine years ago. Rachel Cronin: So what was that process like? So previous to the injury, you were a nurse. Melissa Cronin: Right. Rachel Cronin: Right. Like an ER nurse? No, a baby nurse. Melissa Cronin: In the neonatal intensive care unit, yeah. Rachel Cronin: <laugh> Neonatal intensive care unit, right. So both of those things together <laugh>. Melissa Cronin: Right, yeah <laugh>. Rachel Cronin: And you sort of left that career? Melissa Cronin: Mm-hmm. <affirmative> Rachel Cronin: Do you feel like you left, that you left that career as a result of the injury, right? You, it was too much of a challenge with your disability to maintain working in that kind of environment? Melissa Cronin: Right. At first, it was the physical part of it. Rachel Cronin: Oh, right. Yeah. Cause you had like a lot of PT that you were doing to just get back to. Melissa Cronin: Yeah. Walking and strength. and then it was more about multitasking, which obviously, I struggled with that. I shouldn’t say obvious, but, you know, the brain injury <laugh>. So, and having a lot of things thrown at me at once because I’m slower. I have to really think things through. So working in critical care is really not the ideal place <laugh>. Rachel Cronin: I can imagine <laugh>. Melissa Cronin: For someone who gets brain fo easily <laugh>, right? Rachel Cronin: Yeah. But, so you went back to get your master in writing, right? Melissa Cronin: Yes. Rachel Cronin:In creative writing, right? Not creative writing. Melissa Cronin: Yes. MFA, yes. Rachel Cronin: In non-fiction, your MFA, right. Your masters in fine arts in non-fiction writing Melissa Cronin: Mm-hmm. <affirmative>. Rachel Cronin: So was writing something that you had always been passionate about, or was that a change in your career? Was it something you discovered after leaving the healthcare field? Melissa Cronin: It was something I discovered. I never thought as a kid, like, “Oh, this is my dream. I’m going to be a writer someday.” So no, I never would’ve thought of it until after this accident and trying to figure out what, what am I gonna do with my life and where am I going? And I tried various healthcare settings once I could return to work part-time, and it didn’t work out. I struggled a lot in the workplace, in healthcare. So I kept a journal, and then took a class at CCV or like a writing research class, and loved it and the instructor was great. So I thought, “Okay, I enjoy writing and maybe I can see where this takes me.” And so, the instructor of the class, I asked her to be my mentor for a while to help me with writing, and she did. And then I took some workshops and joined writing groups, and I loved it, and decided, okay, well maybe I could go back to school. And the teacher that I had at CCV, she had gone to Vermont College of Fine Arts years earlier, so she suggested that I look into that. They had a conference that was taking place so I went to that and I thought, “Okay, I’m gonna do this.” It gave me a sense of structure, something I had to show up to every day and do a certain amount of work and writing. And so it helped form my days, and then I decided I really wanted to write a memoir about this accident, or based on the accident that I was part of. And so that became my focal point, and that’s how I got into writing. And since then, it’s been more freelance and writing for local newspapers and like different publications. So yeah, otherwise, I don’t think I would’ve entered the writing world if it wasn’t for my brain injury and this accident that occurred. Yeah. So that’s how that came up <laugh>. Rachel Cronin: It’s sort of like a sliding door sort of moment. It’s hard to say that, like, having this injury that has greatly affected your life had a positive result, but like <laugh>. Melissa Cronin: Right, right. Rachel Cronin: Of course you don’t want to say that, but like, you know. Melissa Cronin: Yeah. Rachel Cronin: I feel like there’s so much in your life that could have gone totally differently if you hadn’t been that there that day and had that accident. Melissa Cronin: Yeah, definitely. Yeah. Yeah. A lot, much different. Rachel Cronin: When we were talking before the podcast, we were talking about, you were saying that there were definite cons, and we’ve talked about some of those in terms of like how you’re perceived by people and how you perceive yourself and those kinds of things. But in terms of like pros and how you’ve adapted, you said something about having to be able to think outside the box, which I thought was interesting. Melissa Cronin: Yeah, yeah. Yeah, I think I’ve always been a curious person and interested and when something comes up that I don’t understand or that’s interesting, I wanna know more about it. So I think that helps. And so, yeah, I’ve all along I’ve felt like, okay, I need to figure something out. And when something excites me or along the way I’ve tried to think, Okay, is this something that I can sustain long term? Am I really interested in this? So I try it and see where it takes me like the gardening <laugh>, for instance, which I know that’s something that really resonates and has really changed me. I realize that this is something that belongs to me, is part of my world and it’s kind of like being a nurse because I’m taking care of plants and nourishing seeds and watering. So it’s the same feeling in a way. Rachel Cronin: Mm-hmm. <affirmative>. Melissa Cronin: Which really helps, yeah. Rachel Cronin: Do you feel like, I mean, I don’t know anybody <laugh> who can be so committed to like, learning a new task and taking on, like you didn’t do any gardening and now you’ve got this beautiful garden and you make the, I can’t think of the word because I’m having my own moment here, but the harvest from the garden was so, so beautiful last year <laugh>. Melissa Cronin: Yeah. Yeah. Crazy <laugh>. Rachel Cronin: <laugh>. But I sometimes wonder if that aspect of that you have, where you’re just super interested in learning something new and developing a new skill set and also being committed to succeeding at it. Melissa Cronin: Mm-hmm <affirmative>. Rachel Cronin: Is that something that you’ve always had? Is that like who you always were or? I sometimes wonder what parts, because I only know you post the injury, right? So I’m like, “what parts of Melissa were there before?” And which parts are new parts of you. Melissa Cronin: Right. Yeah, I think that’s always been who I am a part of me. So that hasn’t changed. Yeah. I’ve always been that way. Rachel Cronin: <laugh>. Melissa Cronin: Yeah, definitely, I would say so. And I think, to my benefit, that’s helped along the way. Rachel Cronin: Mm-hmm. <affirmative>. Melissa Cronin: So yeah, yeah. I mean I think that comes with frustrations cause I’ve always been hard on myself and when I do something, I feel like I have to do it exactly right <laugh> or else, you know, ‘it’s not good enough’ kind of thing. Rachel Cronin: Right. Melissa Cronin: So, yeah. And I’ve had to learn that imperfection is perfect in its own way, so I remind myself of that a lot or just say it’s good enough, you know? Rachel Cronin: Mm-hmm <affirmative>. That’s a great way to say it. Imperfection is perfect in its own way. I like that. You sent me this thing before the podcast about the ‘no end in sight void’ and I wanted to know if you, what you wanted to talk about related to that or what your thoughts were around that, or to explain it to the listeners who probably don’t know what that is, <laugh>. Melissa Cronin: Yes. You know, this is new to me, so I happened to see it on Twitter <laugh> and for people in the disability community, not only people with brain injuries, but people that have chronic illnesses that seem to others on the other side that seem vague or like I said, invisible and how, you know, it’s chronic, it’s every day. And the struggle to be seen and to be heard and understood. And so it’s kind of this place for people to come together and talk and connect and brainstorm to understand one another and to try to help others understand like, this is real, what I’m going through. I’m not fictionalizing it or especially in healthcare and especially with women, I think, you know you go to a doctor or any healthcare professional and they’re like, “Okay, well, it’s probably menopause or something” <laugh>. Rachel Cronin: Right. Melissa Cronin: Or you just had this major life change so it could- Rachel Cronin: You’re depressed, you should go to a therapist, you should- Melissa Cronin: Well, yeah, Right. Well of course I’m depressed because, Rachel Cronin: <laugh>. Melissa Cronin: Who wouldn’t be? <laugh>. Rachel Cronin: So I’m depressed, but it’s a result of this other thing that’s going on <laugh>. Melissa Cronin: It didn’t come out of a void. Well, maybe it did, you know <laugh>. So, yeah. I mean, I shouldn’t say cause there is depression in my family, clinical depression, whereas it’s not necessarily linked to something specific. And I think that’s the hardest part for people to understand. When people look at you and they think, “Well, you have such a great life.” I’ve had that said to me, a friend from years ago, when I was really struggling after the accident, she said, “You know, everything’s great. You’ve met this great guy, you’re getting married, Like, things should be good.” And I’m like, I know, thanks <laugh>. Rachel Cronin: That had to have felt so diminishing. It’s like you’re not allowed to feel the things you feel <laugh>. Melissa Cronin: Right, yeah. So it’s no wonder why people are afraid when you are struggling with something, a disability or depression or an anxiety disorder or any of it, that they are reluctant to say anything or pretend you’re somebody else, someone you’re really not. Yeah. So that’s a hard part of it. Rachel Cronin: Yeah. I was just listening to this podcast well, an episode of “Fresh Air” with Terry Gross on NPR. And I sent you the link to it. Melissa Cronin: I actually listened. I did listen, I listened to most of it. Rachel Cronin: Did you listen to it? Melissa Cronin: Yeah, yeah. Rachel Cronin: It was so interesting. So the topic of it was ostensibly about long COVID, so like people who have gotten COVID and the people who are still struggling with the kind of symptoms. Which I didn’t even realize what the symptoms were to long covid. Melissa Cronin: Yeah. Rachel Cronin: The idea of chronic fatigue, and brain fog, and these kinds of things, which are symptoms of my own chronic illness. And so I took a listen to this podcast and it was so, ostensibly it’s about long COVID, but then it becomes more about navigating a healthcare environment that is not set up to treat people in a holistic way. Melissa Cronin: Right. Rachel Cronin: And the way that she was talking about it, I so related to her, it’s like, “Oh, you’re having this issue, here’s how to fix that one thing.” Like “Here’s this medicine to take, or here do this thing.” And there’s nobody that’s coming in and saying, actually what you have is this other thing that you need to treat, you can’t just treat the brain or the hormone or the gland or the whatever. Melissa Cronin: Right, yeah. Rachel Cronin: You have to treat all of it together for it to have a result. And we just don’t have a medical system that’s set up for that. And the idea that like women in particular, I think you’re right. Like of course mental health issues are a real issue and for some people the treatment is to seek mental health support, but like for some people, they go to the doctor and they’re told over and over again, you have anxiety or you’re just depressed or, I don’t know. Two different doctors told me to go see a therapist, which was like, I should see a therapist, but because of you <laugh>. Melissa Cronin: <Laugh>. Rachel Cronin: So I think that’s interesting and like the kind of interconnectedness between disability and chronic illness. And I didn’t realize that it was three years after your injury that you finally got, Melissa Cronin: Yeah. Rachel Cronin: After the accident that you finally got diagnosed. Like what was that process like? Melissa Cronin: Yeah, it was a little under three years. What happened was because I had returned to a workplace, it was 14 months after the accident, after I had been in rehab and PT, and I had returned to part-time work as a public health nurse, a desk job mostly. And there was some driving involved, and it didn’t take long before I found myself struggling with multitasking. And  I would be at my desk and I would shift papers from one pile to another and kind of <laugh>, I’d get things done but I needed a lot of guidance or I was very slow to understand things and it was a lot of anxiety. And I had been diagnosed with PTSD, so I assumed it was all related to that. And there’s an overlap between brain injury and PTSD because sometimes the symptoms are similar, and a lot of times people that have PTSD it could be the result of something traumatic, like a car accident, <laugh>. So I had been in treatment for PTSD, so I just assigned it to that. And then when I was, I almost got fired from that job, but I quit. And then I took another job in a pediatrician’s office, which was really- Rachel Cronin: I remember that <laugh>. Melissa Cronin: Ridiculous, talk about denial. So I was like, I can do this. And that was only 16 hours a week, but that didn’t last long because I just, I couldn’t handle the constant multi-tasking and the high-paced, fast-paced environment. And so my job was threatened there and I ended up leaving and that’s when I actually saw a specialist, a neuropsychologist. It was recommended by other healthcare providers. And so I underwent some intensive testing, and it was determined that I had sustained a brain injury based on what I was experiencing and the kind of injury that I had, where I was hit, where I had been thrown and hit my left frontal lobe. So, there was questionable bleeding on a CAT scan. Not anything major, but it was questionable. They were like, okay, so this probably is, or definitely is, they classified as a moderate brain injury. Which surprised me because I thought, how could it be, you know of course I’m gonna say that. So that’s how that all came about. You know, because I was put to the test when I tried to go back to work. And so that’s the whole trajectory of that <laugh>. Rachel Cronin: It’s interesting to me that given the nature of what happened to you, that when you’re in PT and you’re in rehab, that’s not a thing that they were testing you for then. Or did they? Melissa Cronin: They did. Well, they did, when I was in the hospital, they had somebody come and just, it was very surface testing. Count backward from 10, and can you remember these 10 or whatever it was and so it was very simple. And I had so many other injuries that they were focused on, you know, I had a ruptured spleen. Rachel Cronin: Right. Melissa Cronin: And things that they had to do to just save my life in the moment, so my brain was secondary because on the CAT scans, they didn’t see any obvious bleeding and I didn’t lose consciousness for very long, or that I remember, I have amnesia, memory loss from the accident so they accounted for that, but it wasn’t a priority for them. And I think that’s a problem not just for me, but for so many people that maybe sustain a concussion, which is a brain injury, people are like, “Oh, it’s just a concussion.” Rachel Cronin: Oh my God <laugh>. Melissa Cronin: I know, right? It’s like, “well, it’s not just.” So I think that’s where people fall through the cracks and they struggle and struggle and years can go by. And unless you have the right support and you’re connected, you just might never know. And then you’re just frustrated forever, <laugh>. Rachel Cronin: Right. And also, I mean, you had to advocate so hard for yourself. Melissa Cronin: Yeah, yeah. Rachel Cronin: You knew something was wrong and you had to push it forward to be able to get the answers you wanted to get. It wasn’t gonna come without you doing the hard work of figuring it out, you know? Melissa Cronin: Right. And I was fortunate because I had a lot of support systems in place with therapists and others that encouraged me to seek these options out. So I wasn’t doing this solo. So that was, I don’t know if I would’ve pursued it. I might have said, “Oh, no, no, it’s just me, it’s my problem.” Or I mean, it is my problem, but I mean, <laugh> just overthinking it or something. And so I think along the way over the years I’ve had a lot of help. Rachel Cronin: Right, and not everybody has that level of support. Melissa Cronin: Right, right. And it’s still hard. I have visual processing issues, so I’ve been in and out of treatment for that. And that’s an area of brain injuries that still needs a lot of work, a lot of people to be in that field and for people to understand that this is part of the process. Rachel Cronin: Yeah, there’s like not a lot of research around it. Melissa Cronin: There is but there’s still a long way to go, especially here in Vermont. There aren’t a lot of providers, there’s like maybe one that I know of or two. And they’re learning about how to diagnose it and to treat it. And it’s a lot of how the brain connects to your, you know, your eyes aren’t separate from your brain, like your gut is not separate. Everything’s connected. Right. <laugh>. And so I hadn’t thought about that until the recent years because whenever I’m outside, like, especially in the fall, if I’m walking, there’s a lot of brightly colored leaves. I’m very hesitant. I feel like I’m gonna slip or I’m gonna fall. And it’s just, it’s my spatial relationship with the leaves <laugh>. Rachel Cronin: Well, no, I get it. Yeah. Like your environment, Melissa Cronin: Yeah Rachel Cronin: You’re not processing it and so you’re not sure where the solid ground is. Melissa Cronin: Right, right, right. Yeah. So a little weird. Rachel Cronin: Do you feel like there’s a, like a general, I don’t know. I mean, when I was a kid and growing up, I don’t feel like there was a lot of this sort of preventative healthcare, self-advocation for yourself if you’re not feeling well or those kinds of things. I feel like there’s been a shift a little bit in the medical world where people are starting to realize that, like you said, you can’t just treat the brain. It’s connected to your eyes, it’s connected to your everything, what you eat affects your brain. I think if I were to say that 20 years ago, “what you eat affects your brain,” people would be like you’re nuts, <laugh>. You know? Melissa Cronin: Right, right. Rachel Cronin: So do you feel like there’s a move towards thinking more holistically about health? Melissa Cronin: I do. I definitely do. because I think also maybe even a decade ago, I might have been reluctant to say something to my primary care doctor about, “Well, I wanna take this supplement.” And now the primary doctor I have, she’s great. I feel comfortable saying, “Well, I wanna try this.” Like I take lavender supplements at night to help with sleep because I’ve gone through periods of time where I have very vivid, violent dreams and lavender has been shown to help calm that. And that was only because I went to a naturopath. And so I think there’s more and more people that are practicing that, and there’s more availability of providers that are open to those kinds of treatments that, especially food and diet-related. I’ve learned a lot about healthy fats and I remember years ago people were like, “Don’t eat fat.” You know, like, eat pretzels and eat whatever, drink Diet Coke, <laugh>. Rachel Cronin: <Laugh>. Melissa Cronin: Or tab whatever <laugh>. And now, I was of that thinking and now I’ve learned over time especially a specialist I went to for my visual processing, she actually a few years back was the one that told me, Try not to eat so much gluten, have healthy fats, you need that for your brain. And I was like, oh, okay. So I do that, I eat avocado every day and these are things that I think 10 years ago, was kind of, I don’t know. Rachel Cronin: Yeah. People just didn’t buy into it. And I think that’s part of the feeling about like <laugh> I hate it when I go to a restaurant and I order something gluten-free and the server’s like, “Do you have an allergy?” Melissa Cronin: Mm-hmm. <affirmative>. Rachel Cronin: And I know they’re just checking- Melissa Cronin: Right. Rachel Cronin: Cause they need to make sure that they do the right things in the kitchen. And I always am like, “Do I go into like my whole health history for them?” <laugh>. Melissa Cronin: Right <laugh>. Rachel Cronin: Do I explain that I have an autoimmune disorder, but it’s not celiac, so it’s not gonna really kill me. Like I feel like that’s my life. Melissa Cronin: Yeah. Rachel Cronin: And so that’s part of that feeling of feeling like the thing you’re dealing with because it’s sort of invisible, people can’t really see it, that when you have to step up and say, “Well, this is a thing I do,” and everybody looks at you sort of like, is it? <laugh>. Melissa Cronin: Right, right. Rachel Cronin: Like you have to convince people that taking lavender at night, even though it’s a you know, but makes sense because it works for you. Melissa Cronin: Yeah, yeah, yeah. It’s like, yeah, people look at you like, “Oh, you’re just jumping on the bandwagon,” or, just cause everyone says to do it, so do it. It’s like, no, this is, this works. So yeah. I think we have a long way to go in terms of the holistic medicine field. Maybe, I think physicians, especially healthcare providers that are new to the field or are entering, maybe there is, I don’t know, like in medical schools or in nursing programs to have more of a holistic track, so to speak. Or there’s a focus on that, an emphasis as you enter the workplace. So, because there’s more and more people that are seeking that out, those alternatives. Rachel Cronin: Yeah. I thought that was another interesting aspect of the NPR episode, or the “Fresh Air” episode where well, she talked about the doctor, I don’t have the woman’s name off the top of my head- Melissa Cronin: I know, I can’t remember. Rachel Cronin: I can look it up <laugh>, but she talked about how she started seeing a doctor that was trained, could write a prescription, trained in the standard western medicine, but also had experience and had been trained in being a natural path and being more of a holistic healthcare professional. And what a great combination that was. I’m so lucky that I found someone like that here in Vermont too. Melissa Cronin: Yeah. Rachel Cronin: And not to mention the health insurance I have that allows me to kind of explore these different things to try and pinpoint what’s wrong. But she also said in that podcast interview that there’s a huge increase in the kinds of diagnoses that people are seeing of these sort of chronic illnesses or these sort of invisible things. More and more people are getting diagnosed with these sort of autoimmune disorders and that kind of stuff. Melissa Cronin: Right, right. Rachel Cronin: And I’m like is it that more and more people are actually getting sick, or have those things or is it that we are better at having that empathy of believing people when they say they’re not feeling well <laugh>. Melissa Cronin: Right. Rachel Cronin: You know, like, was it always this way? Melissa Cronin: Yeah. It’s funny, I was just thinking about that earlier today as I was preparing for this, thinking how over time I’ve been willing to speak out about it more, be more vocal about my disability. I’ve become more comfortable, even though I’m still uncomfortable sometimes because there are more and more people out there that I’ve connected with, social media makes it easier. And I mean, that can be a bad thing too <laugh>. Rachel Cronin:  <Laugh>. Melissa Cronin: Can go wild to that. So yeah, I wonder about that. Rachel Cronin:  Yeah, I was just trying to look up the- Melissa Cronin: Oh, the name? Rachel Cronin: Yeah, Meghan O’Rourke is her name. Melissa Cronin: Yes, yes. Rachel Cronin: Who wrote a book. Melissa Cronin: Mm-hmm <affirmative>. Rachel Cronin: I’ll tell the name for people who are interested. The Invisible Kingdom is the name of her book, Meghan O’Rourke. Melissa Cronin: Right, yeah, yeah. Rachel Cronin: So I’m interested to read that book <laugh>. Melissa Cronin: Yeah, yeah. And you know, speaking of more people talking about invisible disabilities or just disability in general and mental health issues and autoimmune issues, I find that there are more and more books coming out about that, or writings, and maybe it’s just because I’m attentive to it or just, my little flag goes up whenever I hear the term related to disability in the writing world. It just seems like there’s more out there to access in terms of reading about it or listening, podcasts. Rachel Cronin: Do you feel like your memoir that you’re writing taps into these kinds of conversations in terms of healthcare or? Melissa Cronin: Yes. Especially the invisible disability aspect of injury? Yes, it definitely does. The process and what you go through to get a diagnosis and how to deal with it and the red tape and the whole bureaucracy of gaining what you need or access. Yeah, definitely. Yeah. Yeah. Rachel Cronin: Well I mean I feel like I’ve hit on all of the things in my notes. I don’t know, how do you feel? Melissa Cronin: No, I feel good about it. I know I took a lot of notes. I just think that yeah, this is a good conversation. I think, I hope, I want others to benefit. I think the biggest thing is for people that don’t understand disability or especially invisible disabilities and to try to listen to those who are struggling and take it upon yourself to learn rather than be quick to say, “Oh, you know, yeah, I have that too. Yeah. I get brain fog” <laugh>. Rachel Cronin: Sometimes I worry that I do that to you cause like- Melissa Cronin: Yeah, I’m sure we don’t. Rachel Cronin: You know we’ll be talking things that are symptomatic to your disability and I’ll be like, “Oh man, I totally relate to that” <laugh>. But I know it’s a very different thing. And I think you’re right that people are often dismissive of those kinds of things, like brain fog or “Oh, she’s just not as quick at picking things up as other people.” They don’t think about it as a thing that you’re struggling with. Melissa Cronin: Right. Rachel Cronin: They just think it’s who you are, you know? Melissa Cronin: Right, right. And I mean, I think it’s okay for people to say I can relate to that. It’s nice to have a connection with someone who can share the same symptoms or same experiences because then you don’t feel so much alone. You’re like, “Okay, I’m not crazy” <laugh>, you know? Rachel Cronin: Right. Melissa Cronin: This is real. So that can be helpful. It’s more about kind of the dismissiveness like you said, the “Oh, don’t worry, you’re fine, everybody forgets things once in a while.” It’s like, okay <laugh>. Rachel Cronin: Right. Yeah. Like in general, just like being able to be more empathetic with people who might have a different life experience than you do. Melissa Cronin: Right, right. Yeah, yeah. Rachel Cronin: Where can people find you online, Melissa? Melissa Cronin: I’m on Twitter, Instagram, I haven’t been on Facebook as much. Rachel Cronin: That’s probably a good thing <laugh>. Melissa Cronin: I’ll say these days Twitter, my website MelissaCronin.com and yeah, that’s probably <laugh>. Rachel Cronin: Yeah, the website MelissaCronin.com links to a lot of your writings too, if people are curious to read more about your thoughts around lots of different things. Melissa Cronin: Right. And I have a newsletter that I come out with once a month and so on my website, people can sign up for that. And it’s not just about brain injury, it’s about just different things, interesting <laugh>. Rachel Cronin: I love your newsletter and there’s always such great tips for new things to read or watch or think about. Melissa Cronin: Yeah. Yeah. So it’s short and easy, so it doesn’t take up too much bandwidth and much space on your computer or your email <laugh>. Rachel Cronin: <Laugh> That’s true. Well, thanks so much for taking the time to talk to me. Melissa Cronin: Well, thank you. This was fun <laugh>.   Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

https://youtu.be/UUdVvPAdQh4 In this episode, Ariana Cano-Gomez from The Nature Conservancy of Vermont, talks with Bridget Butler, aka “Bird Diva.” Butler specializes in the art of “slow-birding”, or approaching birding in a way that prioritizes slowing down. They talk about how Butler’s slow-birding ideas touch on disability, race, and access to and love for Vermont’s wild places. “Like something as simple as bathrooms: oh my gosh! I thought this place would be fine because it had a building and all of that. But it wasn’t: the doorways were too narrow, and the path from the parking to the main trail? There was like a big muddy dip! And I thought, ‘There’s no way that someone using a wheelchair could really navigate this.’ It just kind of blew my mind.” A full transcript of the episode appears below. Ariana Cano: Hello everyone. My name is Ariana Cono Gomez and I’m the marketing and outreach coordinator for The Nature Conservancy in Vermont, and I’m here today with Bridget Butler, also known as the Bird Diva. And I’m gonna ask Bridget to introduce herself before we get started. Bridget Butler: Yay, Ariana. Thank you so much. I’m really excited to be here. So who am I? Where am I? I’m in Northwestern Vermont. I own a small business called Bird Diva Consulting which focuses on doing outreach and programming around bird conservation. And I think I need to add to that, like wellness and nature, like this nature wellness connection. I don’t know. We’re gonna fine-tune that at some point. Ariana Cano: Great. And well, thank you for being here, for being part of this conversation. I think we can, I can speak for both of us that we’re both really excited to just dive into some great examples of how we make nature accessible to all and how we think about everyone when we want to share the things that we love, protect and conserve. So I am now gonna ask you about, you know, your relationship with disability. Can you talk a little bit about that? Bridget Butler: Mm, yeah. I don’t have a relationship with disability. I’m actually an able-bodied person. And so my awareness about disability within our community came through my work. Birding. I have a program called Slow Bird, which came about as a way to approach birding in a way that was less competitive, and less list driven. And as I started to kind of fine-tune what I was offering to folks, people started to come to me and tell me how this was helping them participate in something that they felt like they weren’t a part of. There wasn’t that sense of belonging or even an avenue into participating. And so from there I really started to investigate things a little bit more, to better understand what are some of the barriers that people have to birding and to nature, and how can I fine-tune my work and what I’m offering to be more inclusive and accessible to people of all ability types. Ariana Cano: Yeah, I mean, this is, this is such, I have so many questions about this <laugh>. Cause I, you know, a nature-oriented person myself, birding is a huge hobby that a lot of environmentalists, even people you know, that are not necessarily in this field partake in. So can you walk me a little bit, right, for those of us, including myself to talk a little bit more about like bird and how slow birding might be different? Bridget Butler: Yeah. Yep. So birding is a verb, right? Like, that’s the first thing that we can start with. We can use birding as a verb, which really means that you are actively noticing birds, maybe bird behavior. And the traditional way of birding that is embraced by most of the bird community tends to be, I mean, what I call list driven. So the idea is that you go to a site, you walk through that place, and I’m gonna intentionally say walk because we call them bird walks often. And you try to find as many birds as possible, identify them, kind of record what you’re seeing and, and you move on to the next one. So there’s always this like, I need to see the next bird, the next bird, the next bird. And I did that for a number of years. You know, I, I’ve worked for Audubon centers all over New England, and finally got into birding after feeling like it really wasn’t for me. And the reason why I felt like it wasn’t for me is because people were a little bit competitive and they were a little mm, snooty about their knowledge, and they didn’t wanna tell you where this bird was or that bird was, right because they wanted to have it for their own list. So there was also that component to birding that really turned me off in the beginning. I came into birding because I joined a community of birders that was more open along those lines more willing to draw you in help you figure things out. But it was still very identification and list driven. And so I started to question, what do I like about burning? What do I value? And really for me, what led it led to slow birding was this need to understand bird behaviors. And really to do that, you have to slow down and stay in one place. You can’t always be looking for the next bird, right? So if you don’t stay and spend some time with that robin, or that song Sparrow that you see, or that unknown bird, right? Can we leave it in that unknown place and just watch it anyways? You don’t get a chance to see some really unique and special things. And that’s, that’s where it led to for me. And the core piece of slow birding core practice and slow birding that I teach, is using the sit spot method, which is totally different than a traditional bird walk. It’s staying in one place, allowing the birds and the wildlife to come back in around you. And then noticing things and noticing things beyond what type of bird it is and trying to let go of that that need to write everything down, write all the birds down, get as many bird species as possible, complete the trail, go from the spot to the spot and make sure you cover all the ground that you can. And that’s where it, that’s where it started from, was my need to be able to experience bird behaviors and to slow down a little bit and, and really be in the moment. And it’s really blossomed into so much more. Ariana Cano: Yeah. And I, and I wanna talk about that because I know that like inadvertently, right, so many other things have happened from this idea and this thought that, and what I like about you talking about this is that slow burning sounds like it makes a lot more sense than like traditional burning, right? Because you’re spent, it’s, it’s a lot more mindful from the way you’re describing it. So I wanna ask you kind of like, what, what are, what are these things that you reference that you know, came about because of this slow-burning path that you’ve taken? Bridget Butler: Yeah, so I think the first thing that I realized in, in approaching birding in this way and it comes from, and you’ve probably had discussions with people like this too, I know pretty much probably every birder has where you meet someone new maybe you’re not even on a, a bird outing. And they, you identify as a birder. You’re like, Yeah, I really like birding. I consider myself a birder. And the first thing that the person does is they’re like, Oh, well, I’m not a birder, but, and then they go into this story about birds. So there’s a whole segment of people out there that connect with birds and love birds and wanna know more about birds, but there’s this reluctance to like, identify as a birder. And so I started to really pick that apart and try to figure out: what is it that is keeping people from identifying as part of this community? And it was that there was this one track for how to participate, right? It’s the, it’s the walk, it’s the listing and all of that. And so what I realized, first of all, where people were coming to me and saying, This is giving me permission to bird the way that I like to bird. And all of a sudden there was this sense of belonging for some of these people. And I, I think that was the biggest thing for me to be, to begin with, was how can we, that question of how can I make burning more inclusive? And this was a way, was to basically say to people, if you <laugh>, if you are noticing birds and you’re getting joy out of it and it’s sparking your curiosity, then guess what? You’re a birder. You don’t have to have binoculars and you don’t have to have a eBird account and all these other things. Mm-hmm. So I think that was the, the first kind of spark that went off was like, Ooh, this is opening the doors to so many other people who want to really be a part of this community of people who love birds. I think the second thing that happened to me personally was it taught me to slow down and be in a space and let go of a lot of other things. So I think this mindful aspect and I, right, like I don’t meditate, I don’t do yoga. I mean, gosh, I really wish I would walk every day, but like in terms of having a practice, a mindfulness practice, or a yoga practice or I didn’t have any of those things. But what I started to realize is that sitting, being with birds, and opening up my senses was mindful and was a way to meditate. And I really started to lean on it as something other than something to do to improve my bird list or to just see birds. It became a way to take care of myself. And then I started to hear from other people about that too. And this is where I like, I’m like, I get emotional cuz like, you, you’re not sure if people are gonna grab onto this cuz it is a little different. It’s a little bit off this, this path that, that everybody seems to be following. I started to hear stories from people who had been ill or injured and this practice freed them up and took some of the pressure off of feeling like they couldn’t participate in something that they loved. Now I had a friend, I’m gonna call her a friend now. She started off as a client and she fell and broke her hip and broke her arm. We had scheduled a time to go birding together with a bunch of her friends. She hired me to come to her property and take her and a bunch of her friends to bird on her property for her birthday. We had to postpone it because she had fallen and broken her hip. And when I showed up for the walk, she was still recovering. Hmm. And she had a broken arm and she couldn’t go far from the house. And she apologized to me. She’s like, I should have told you this, but I didn’t want you not to come because we couldn’t go birding. And I was like, What do you like, Like, wait, we can still go birding. Like it doesn’t, we don’t have to walk. And what was beautiful, what happened out of it is she had already started this practice of sitting in different spots in her yard. And what we decided to do was she and her and I and her friends picked spots that were like the hot spots in her yard. And then we figured out ways where we could get a lawn chair or get an umbrella and a lawn chair and set things up so that it was within walking distance of her home so she could sit and be with the birds. She said it really helped her with her recovery. Ariana Cano: Right. That Bridget Butler: Was the, I mean, that was the other big light bulb that went off for me. So I’ve just started a deeper dive to learn more, inform myself, and start to change how I speak about my work so people can see and know how it’s inclusive and is, you know, a way for people to continue to explore nature in a way that’s really super comfortable for them. Ariana Cano: Yeah. And I want to put a pin on that part, that second part of how do we make it more inclusive? Cuz I wanna dive in a little bit more, especially from just not burning, but people navigating nature, right? Like, and something that we do want people to have access to and feel comfortable and safe and welcome. But before we pivot into that, I would ask you, right, cause this all sounds great and like, I’m just so surprised, pleasantly surprised about this experience and process, right? Something so kinda like mainstream is burning also led you into understanding other aspects of how you can do the same thing in a way that’s more mindful and rewarding. But I wanna ask you, were there certain challenges along the way or like learning things that you have noticed because of this process that you were like, Oh, that that is a learning opportunity for me, or this happened and I should do this differently type of thing? Bridget Butler: Yeah. You know, I think the first thing was making people comfortable with it. A lot of folks looked at this to begin with as something that was a little bit weird, right? Like, Oh, you’re gonna sit still. Like, I don’t understand that. So I think the first thing that I had to figure out how to do was really explain things in a way that communicated, you know, what this practice was, why it was valuable how it could open you up to a deeper skill set even if you were like a traditional birder. So that was the first thing. I think there’s a lot of looking at your own habits right down to language. Like already in this interview I’ve talked about shifting from saying, calling everything a bird walk. I mean, obviously, slow-birding is not always walking, it’s sitting in place. How do we des describe things differently? Bird outing instead of walking. The other piece was, I mean, thinking where can I go with people? So, you know, the client that I had, she had a walker and it changed the way that I looked at the landscape that I wanted to explore with people. And the group that really helped me and is still helping me kind of assess my work and how I put my programming and my courses and things out there is her ability. This is a nonsmall non-profit organization that just started within the past two years. And what they do is provide free information on how to make the burden more accessible to all different body types. All different learning types, including folks that are neurodivergent, right? Like all like, and the minute I joined this group, I was like, Oh my gosh, there’s so many barriers to participation. Ariana Cano: Yeah. Bridget Butler: And that’s where it becomes really overwhelming and you kind of just have to do one thing at a time, like pick a couple of things to change and do those and do them really well and be open to crashing and burning and people not being comfortable. Oh, being really uncomfortable. And how do you get through that discomfort? Messing up oof. I’ve, in, in, in groups that are wor are really focused on this work. Oh, I’ve learned all the words that we shouldn’t be saying anymore handicapped and oh, wheelchair-bound and all of those things. And I’ve definitely said those in front of people and kindly Ben reminded that there are other words that we can start to use. So I think for me, it really started with like, word choice is one. How do I communicate my programming in a way that shows people that it is open and accessible, you know, and they can choose for themselves, they can read it and they can say, Ooh, this is all the information I need to see if this is gonna work for me. And then really doing the research and finding those groups that we’re gonna support my learning and knowledge about how, how to, how to just make this shift in this change. Ariana Cano: Yeah, that’s, I mean, that’s so powerful right there, like the part around the discomfort, but then also people’s like fear of making a mistake, right? As we try these new things, I think a lot in this conversation about inclusivity or like making sure that we shift the barriers, right? Like completely transform them in a way that they are actually accessible spaces. People get really hung up on this fear of like, I’m gonna say something wrong, I’m gonna make a mistake. And I think that what’s really great and hearing you talk about this is that you have this really successful, like, wonderful, welcoming way of experiencing birds. And that you didn’t do it overnight, <laugh>, you didn’t like wake up. You were like, Okay, I did it <laugh>, it works. Bridget Butler: It’s all good. No, and, and I think it’s it’s also really being able to listen to other people, right? And stop that narrative that you have in your brain of how things should be and how they should work and all of that. I know the first time that I use the bird ability checklist, so Bird Ability has this checklist that you can download and bring to your favorite birding site. And basically, it’s a way for them to gather information about places that can be accessible or could be more accessible with a little bit of support and work or funding and upload it to a map so that folks have a place to go to find sites that are accessible based on what their needs are. And the first time that I used that checklist, I was like, Oh my gosh, I am seeing this place that I love, to converting what I thought through my able-bodied lens was going to be perfect. Hmm. No. Like something as simple as bathrooms. Ariana Cano: Yeah. Bridget Butler: Oh my gosh. I was just like, and I thought that this place would be fine because it had a building and, and all of that, but it wasn’t, and the doorways were too narrow and the path from the parking to the main trail there was like a, a big muddy like dip. And I was like, there’s no way that someone who’s using a wheelchair could, you know, navigate this. It just kind of really blew my mind thinking about the noise level thinking about personal safety and all the lenses that you can see a space in terms of your own personal safety and comfort. So it was a really great exercise for me to kind of expose my own blinders. Ariana Cano: Yeah. I, so, okay, so I wanna announce like we’re opening off into just, you know, so much of what you’re saying is not exclusive to burning. Like we see it everywhere. Everywhere. Like I, you are talking and I’m like, yes, the outdoor sports world like I have experienced just how challenging it can be even as an able-bodied individual to feel welcomed or included or safe. And then there’s also the layer of these places that are trying certain things, right? And really, now seems like a good opportunity more than ever because we can’t fix the path. And right now is what we have to be thoughtful of like, okay, what, you know, where should we go as environmentalists? Where should we go as outdoor enthusiasts? I read something recently about the University of Vermont did a study that throughout, you know, like peak pandemic. So the past few years people resorted to nature more than ever. And it was a, a place that gave people a lot of, you know, something to do well because we were locked down in quarantine. But also just again, going back to the need that we have of connecting to nature, being outside snow, the fresh air. And I wanna talk about, you know, like, because we’re both environmentalists, right? You have a background in the environmental world and I love nature <laugh>. I think that’s like, that’s the bare minimum that anyone needs to be part of this crew. You know, like what do you think are the biggest obstacles for people with disabilities to fully access the outdoors and let’s keep us going, Right? <Laugh>. Right. And I want this conversation to be a lot around like, you know, like, what can we do better? And I say that, you know, the rep, you know, a representative or an employer of the Nature Conservancy, Vermont, because I know that we’ve done some things, but there’s so much room to grow for everyone. Bridget Butler: Yeah. I think this goes back to that baby steps type of thing. And you know, in Vermont you think about I when you Yeah. Baby steps because when you start to think about it, you’re like, Oh my gosh, there’s so much. How can we make everything accessible? And Vermont has mountains, like, how’s that gonna work? How do we get people down to the brooks and the waterfalls and the salamanders in the wetlands and the, you know, like all of a sudden you’re like, Oh my God, it’s so insurmountable. But they’re right. So baby steps. And I think first is like finding who your allies are in this. Like who’s in your community? Who has the knowledge? Cause I don’t have the knowledge. I don’t know what challenges folks that are disabled are coming up against. So finding those partners that can give you that type of information and that type of background to help you kind of then transform your work. So the baby steps piece I think really too starts to get at how do we communicate with people? And so Right. If you are offering programs already, which right. TNC does and, and I do too. Like, we wanna get people out on the land. So I think one of the easiest ways to do that is really to start to fine tune how we describe what we are going to be doing together. We can’t make every single walk accessible, but we can start to change how we describe walks so that people reading about them can choose for themselves whether it fits for them. And I don’t think we do a good job of that right now. So I’m still learning how to do that and to describe things. And it, you know what, it takes a little bit more work because you’re not talking to the people. You’re not talk, you’re not trying to talk to your constituents already. You’re not trying to talk to the birders or the hikers or, you know, the, the insect lovers that already know how to get out on things and know what your product is. You’re trying to reach those people who want to have a connection with nature but don’t see themselves in these groups yet the, the people that are like, Oh, well I’m not a birder kind of thing. Ariana Cano: Right. Bridget Butler: So it, I think it kind of starts there and we can back Yeah, go ahead. Ariana Cano: Well, I was gonna like chime in and say that from the perspective of like, you know, like, and I think a lot about this as an organization, right? That we have a mission to like save our climate crisis and kind of address our biodiversity loss. And the way we often do that is through these outings and the need, the inherent need for these organizations to recognize that our formula of just inviting birders to go out burning with the birders is not gonna work in order for us to meet these goals that we have, right? Like, this is like an all-hands-on-deck situation. So there’s that like from the, you know, I’m speaking from the objective of organizations is to like, what’s in it for me? But then there’s the other part of like, if you really love these places and hobbies and things like that so much, like just go the extra mile to make it really accessible to all and share it with people. So I just wanted to chime in because I think yeah, we just do like what’s easy and comfortable, but when you tie it into our actual environmental goals, like folks, we need everyone <laugh>. Like, everyone needs to be out here enjoying these things, or else we won’t succeed. Bridget Butler: Yeah. And that’s about meeting people where they’re at, right? And that’s about listening to what other people have to say about why they’re not able to access nature or what are the barriers to them accessing nature. And then that means a huge shift in how we think about planning our programs and our outreach now. And I, so I think the first thing is just taking what you already have, thinking about how to communicate better about what it has to offer. And then you can go through the whole kind of assessment of: are we offering enough different types of experiences that different people can see themselves in? Like, can I see myself doing that? Right. And hopefully, if you’re explaining it well, people will be able to see themselves in that. And then trying to offer like, great, what’s the continuum of accessibility? Cause there are so many different ways to think about it from folks who are neurodivergent or from people of color who maybe don’t feel safe in the outdoors. How do we do a better job of introducing them to places where they will feel safe? What does that look like? What does that feel like? I keep asking those questions over and over again of other people and people that I come into contact with so I can better understand. And then I think, sorry, can you hear that? Just gonna wait for a second. Ariana Cano: What is it? Bridget Butler: It’s the dump, the not dump truck trash truck coming down the street. Speaker 3: <Laugh>. Bridget Butler: Okay. So the pin we were gonna say I was gonna say, and then the pe it’s really about, okay, I know where I’m at. He’s gonna come back the, I’m like, they’re gonna go down to the, I’m on a dead end street. So it’s like, go down to the dead end, get so and so’s garbage and come back. But typically they back down. So that’s why there’s the beeping. And maybe it won’t be so loud now. Okay, well let’s try it. Okay. It reminds me of when I used to do stuff with channel five and channel three and the airplanes would fly over while we were outside like recording stuff and they’d be like “Hold, we gotta hold.” Okay. And then I think the next big piece is this intentional planning for people with a specific type of disability. So if you wanted to make things accessible for people with mobility issues, what would that, what would that look like? Where do we need to go? Right? So, that takes more time and thinking and consideration and probably that partner again Right? That maybe knows a little bit more about that community of people and what their needs are. Ariana Cano: Yeah. And how important it is to build these relationships authentically. Cause I think oftentimes people, like what you were saying, it’s baby steps, but we also have to acknowledge that there’s so many organizations that are already doing this work, right? So instead of reinventing the wheel, how do we show up as partners and allies and say like, “Hey, we’re here to listen.” Like what can we do? What do you need from us? How can we support you? Instead of just like, you know, starting your own formula in your own corner of the world without involving the people that you’re actually hoping to serve. I think that you know, it’s what, it’s Bridget Butler: That performative piece. Yeah. That’s that performative piece. And you and I have discussed this of, and that’s a fear, right? You wanna do the right thing, right? But you don’t wanna be performative. So how do you get there? And it does take time. This is the same thing that we do in conservation. It takes time to build relationships, to change and to take action when it comes to conserving land. You can’t just go out there and be like, Oh, it’s done. We bought this big chuck land and everything’s right. It doesn’t, it, you may want it to happen like that. And I feel like there’s also all of this pressure because of climate change and, you know, loss of biodiversity, right? That we feel this pressure to get it done right away, but we can’t do it without relationships and relation ships take time and and we have to come from a, a genuine place in order to build a really good relationship. Ariana Cano: Yeah. And, you know, how do we continue building on that? Right? I know that in the past, like the Nature Conservancy has put in an effort to build accessible boardwalks, and yes, they’re successful, they’re good, they benefit, but a lot of these, you know, weren’t necessarily the best prime example that we should be using for the next model, Right? And like, our goal, and what I hope that we can do as an organization is take that moment to sit down and listen. Like, okay, how do we improve on this? How do we build what we attempted and learn from that mistake or learn from that opportunity to do better? Because even, you know, like it goes back to the example of like, you didn’t think of slow boarding overnight. And there’s, I think there’s a lot of fear in that. And I hope that people, you know, if, if there’s something to take away, at least for me, if this conversation is a lot of like how it is scary, it is really uncomfortable to dive in as an able bodied person to try to, you know, figure out how to be a better human or more human. There’s a lot of fear that we will mess up and that it’ll feel uncomfortable. But that’s literally the point <laugh>, right? Right. Like that right there, it’s like why it’s so hard and, and that it’s okay. It is so okay. As long as you take the moment to sit and be like, All right, this is how I’m gonna do the next thing better. And, and I I, I really hope that it can be, you know, like extrapolated into the organizational level and see more groups that, you know, and I I wanna ask you this too as like, you know, you’re the perfect kind of person because you can see it from these two perspectives that the slow birding, you know, utilizes nature as a way, as an individual. What, you know, and I asked that question of like, what more can we do? But according to you, like where, you know, where should we go as organizations? Like where should we start having more of these conversations? Like how do we bring people in to think about it, the random, you know, mainstream bird out in the middle of Vermont. How do we get them to wake up and be like, You know what? We should do this. Oh, I know. It’s not an easy question. Bridget Butler: Oh, that’s not like a hard one. Ariana Cano: Mm. Bridget Butler: Yeah. I think what I’m learning from my experience is that you have to do your homework. You have to look internally first, personally get that straight before you start, right? Cause it’s almost like with social media, it’s really easy to just be like, Oh yes, this is a good thing. Like, I’m gonna hit share, rah rah. Right? But if you haven’t read the article Ariana Cano: Right, Bridget Butler: All the way through and you haven’t reflected on what you’ve read and maybe even gone that next step of practicing it yourself Hmm. Then you’re really not ready to bring it to other people. And then I think you have to bring people along slowly. I’m definitely learning that in my slow birding work too. There are facets of, of the slow birding practice that are edgy for people. Ariana Cano: Hmm. Bridget Butler: Just sitting in place is edgy. If I ask you to sit in place and relax your shoulders, all of a sudden you’re like, that’s not burning. That’s something else. Right? And that’s edgy for some people. And I think some of these things are edgy for people. And so you have to watch for those edges with your team with whatever organization you’re working in. The board that you’re sitting on mm-hmm. <Affirmative>. and how do you bring folks along? And I know it can’t always be slow, but how Yeah. How do we do this in a way that we’re recognizing that this is, this is vulnerable work, it’s edgy work. It means, you know, admitting that we’re not including everybody and that doesn’t feel good. Ariana Cano: Mm-hmm. Bridget Butler: <Affirmative> it’s also admitting that we don’t know how to do it, but there are people out there that are doing this work that have learned some things that we can be like, Ooh, I don’t have to fall down that set of stairs, <laugh>. I don’t have to. Like, I, there’s other folks that are like, Ooh, this is, this is what will, will help you make these first few steps. So again, I think that goes back to that partnership piece and really truly listening to other folks who have experience in these areas who experience it as they’re trying to navigate connecting with nature. Yeah. Believing people. One of the things that ver ability teaches is like, one of the first things in, in leading an accessible bird walk is when somebody identifies a bird is to believe them, right? When someone comes to you and says, Well, your walks aren’t super accessible because like, I can’t park there, there’s no parking for me as a disabled person. Or the two big things that are really important for me are bathrooms and water. Like, if I can’t access those things or I didn’t even know how to get to that site. I mean, how many trip things have you read where it’s like, well, you know, just find it on the map for yourself. There’s certain things that are missing that are barriers to people. And if we don’t listen to people talk about those barriers or even ask them, like, what are the barriers to you participating or to our partners that have pulled some of this knowledge, what are the barriers to the folks in your community from, from accessing these trails, from accessing bird outings, whatever it is. That’s hard. Ariana Cano: Yeah. No, thank you. That’s, it’s hard and it’s, it’s a lot of work, but it’s, it’s important work, Bridget Butler: Right? Oh, it’s so good. It’s so, it is so it is so good. Again, like I get excited about this when I go back to thinking about how many people have sent me notes or just said clean out. Like the whole permission thing just kind of blows my mind. I’m like, who’s the gatekeeper on this? Like, there’s gate keep, you feel like there’s Gate Keep, Somebody is telling you that you can’t and you needed permission. Oh, that’s just heartbreaking, Right? Nature’s right there. Ariana Cano: Right. Bridget Butler: We shouldn’t be telling anybody how to connect with, We should be facilitating those connections in a way that bring joy and further connection and and curiosity. Ariana Cano: Yeah. Thank you. That was, that was great. I mean, that part right there was just like, girl moment of that thought. For sure. I, I guess I, I want to ask you more about slow birding just because it seems like there’s both such an opportunity for people to get into birding, even myself. Like, I, I have never thought about burning. I’m not one of the burning burners. Bridget Butler: You just said it. Bridget Butler: No, no. Ariana Cano: I have, I look at birds, so I guess I’m a birder mm-hmm. <Affirmative>. but I really like the idea of slow burning. I, I just love the mindfulness and like the slowing down of it, especially in a society that like pushes us to like see everything, catch everything, look here, go there. So I guess my question to you, right? Like, we don’t need you to be out with me in nature to go slow bird. Anyone can slow bird, anyone and everyone can do it. So, so anyone out there that’s like, how do I do this? Like, what, where do I begin? <Laugh> Yeah. Bridget Butler: Where’s the starting point? Ariana Cano: Yeah. Bridget Butler: Pay attention. I think the first thing is just pay attention to those moments when you feel that little spark or that zing. When you are connecting with birds, I think that’s like the very what, what is happening. And then like, zoom out on that. Like, what just happened and why did this feel so good? And then try to create those moments for yourself. So for me, slow birding really burning shifted for me when I stop moving, when I stop trying to walk and cover a lot of ground and, and write all the birds down. And so I think, you know, the next piece is, is to try that, right? Is to try staying in one place or try sitting at your window for 20 minutes and just noticing what’s outside. I think the other piece is changing your intention. And I think this is where that pe that that thing of people being like, Well, I’m not a birder. Ariana Cano: Mm-hmm. <affirmative> Bridget Butler: Shifting your, Most people think birders know a lot. They know everything that there is to know about birds. And really that’s a process, an arc, a lot of time spent trying to get to know birds and assembly, your resources and all kinds of things like that. But really it’s about just developing some skills, opening up your senses looking in a different way. What if you sat and you looked at birds just to notice things about them rather than to identify them? Ariana Cano: Hmm. Bridget Butler: How would that shift? So if you set different intentions, I think that starts to change how you connect and the depth, it opens up this opportunity to connect on a much deeper level. For experienced birders. I, I often challenge them to let go of something. Try letting go of going out for the day and having a target bird. Like, this is a bird I wanna see. I know they’re in the area. Right? Cuz what ends up happening a lot of times, like, if you don’t see that bird, how do you feel? Ariana Cano: Right. Right. You get bombed. Yeah. Bridget Butler: Yeah. It’s like this deeper Ariana Cano: <Laugh>. Bridget Butler: Right? I had a great day in nature, but yeah. Let’s, like, let’s shift away from that. So I, you know, I, I think for anyone, whether you’re a birder or not, what is it that question about what is it that you value about the time that you spend in nature? What am I getting out of it and how do I feel afterwards? And then as you develop a practice of connecting, whether it’s with birds or with, or, you know, trees or insects or mosses or, or whatever it is, how do I wanna feel after choosing to spend time outside, you know, noticing these things or being in nature. How do I wanna feel? And I think that then, you know, informs your practice. I keep saying practice too. This is the other thing that’s shifted for me is that slow burning is a practice. It’s not, I don’t think of it as a hobby. I have to think about that some more. Cause it’s, it, it becomes something else. It really has, it’s become, for me, it’s become a way, a path to wellness. It’s also become a path to connecting with the land in a different way that’s much more relational than it is Object me, object, objectifying nature. Oh my gosh, don’t <laugh>. Right. Right. It’s an burning is like Right. Burning, traditional burning is like, I, that’s an object for me to look at, or it’s an object for me to study, or it’s an object for me to gather data on. Right. We’re always objectifying things. And I think the arc of my slow burning practices brought me to this other place of being in relation with the land. Right. And I think that has the power to change a lot personally, professionally, and I mean, regionally, community wise. Like how we think about how do we connect with more people and get them to care about the land so that we can tackle these big things like climate change and biodiversity loss. You, you, we have to help people thread that personal piece through it. And what’s personal for me is not going to be personal for somebody else, but like, I, I think a true conservationist can facilitate that relationship with the land, with the birds, with the moss, with the salamanders, whatever it is. Yeah. Ariana Cano: Yeah. No, yeah. I don’t, I don’t think I have anything to add to that. That was pretty insightful and great. And just, yeah. The objectification of nature as like a hobby. I love that you tie it into like this practice of like, you know, at its core what you’re saying is the outside enjoy sitting around and looking, and birds will show themselves to you and experience that. Right. and it, what I really love is that by using, you know, or by like naming this different form of practice, it naturally becomes more inclusive and accessible. Right? It’s that when we made it so extractive, when we made it this objectifying hobby, we started limiting a lot of people from that enjoyment and how sad that is, Right? Like I, Yeah. Again, I am coming into this as such a non burner, apparently also burner, according to what you were Bridget Butler: Saying, <laugh>. But Ariana Cano: The second option just sounds a lot more meaningful to me and what I wanna do. Right. I also, this is not necessarily relevant, but I, in my head, when I think of birders, I think of them as good whistlers because they always can imitate birds. I can’t whistle. So the whole time I’m always Bridget Butler: Like, So now Ariana Cano: What’d you say? Bridget Butler: You’re like, So I don’t fit in. Ariana Cano: Exactly. It’s like I don’t, I dunno how to do that. How do I talk to the birds if I can’t whistle? I guess I don’t talk to the birds. Mm-Hmm. <affirmative>. But what you’re doing is like, no, you, by just being there with it in a relationship aspect, you’re, you’re in it, you’re doing it. Bridget Butler: Yes, you are. And I think, you know, Wow. Gosh. Like the other piece to that is, is that in order to fit in, I need to do it this way. Ariana Cano: Mm-hmm. <affirmative>, Bridget Butler: Right? And so everything that we see in the burning world and maybe even everything that we see in Right. Like the conservation world, it, there’s this perception of having to do it this one way. Ariana Cano: Yes. Bridget Butler: Or there’s a mainstream way to do it. Right. And so you don’t feel like you fit into that. Gosh, nature and birds are really, they’re really for everyone. Oh, this is where I just like having that realization. It’s an awakening to realize that there are people that feel like they’re not included. We have these bird walks come on, on these bird walks. There’s one every month, it’ll be great. Right? You’ll love it. There’s all these people there. Right. And you should just come. There’s so much going on in that person’s head that you just invited that is, is like the doubting and the, I don’t really belong and I don’t have binoculars and I don’t even know where that is. And what if I show up and I don’t know anybody? And what if I show up and nobody else shows up and gosh, all of those things, or I can’t because I, you know, I, whatever it is. Like, what are all those barriers? How do we just decrease, Just decrease one. Let’s just pick one at a time and just start hacking away at it. Ariana Cano: I love it. I am like, God, this is, this is great. So when we think of five years ahead, right? What is your hope to be with slow birding? And what about you personally? Like what do you see the ideal self and slow burden in five years? Bridget Butler: So in, in five years, I really hope that slow birding and other types of burden are not looked on as weird or different or or don’t set themselves up to be that same thing that mainstream birding is. Right? I would like to see slow burning Right now. It’s like pushing into all these other different places, right? So it started off as really being able to experience and no birds beyond identification. And then it started to go into this wellness place, which is really wonderful and I enjoying exploring that more. And then there’s this other piece which is more this relational spiritual piece, if you will. Right? Because people start to connect to the land they become, they come in relationship with the land. And that’s a very spiritual thing for some people. I, I would like slow burning practice to metamorphose through all of that and just be open. I wanna see how people take it and make it their own. Right? Like, take it and make it your own. Right. Whatever that means for you. If, if it’s really just opening a door and giving people permission to connect with birds in a way that’s comfortable and less pressure and all of that, that then, then I’ve done it. We’re good. Five years. Personally I want to see where this pushes me in terms of how I think about my relationship with the land. You and I have talked about this in other conversations about thinking about how conservation has been seen through this very white lens mm-hmm. <Affirmative> also this lens of ownership of objectification of the land of its resources mm-hmm. <Affirmative>. I, I struggle. I am struggling and it’s uncomfortable to think about how we’ve gone about conserving land even in Vermont. I think about the wildlife refuge up where I live in northwestern Vermont and how this is the place of the Avan AKI people and how in order to make a wildlife refuge, we pushed a lot of people off of that land mm-hmm. <Affirmative>. And we’re still striving to repair that relationship with the people and with the end itself. I think about how I need to shift my thinking around what sustainability means and really is talking about sustainability. Just a way for us to say that we can still take what we want from the land. Ariana Cano: Mm-hmm. <affirmative>. Bridget Butler: So in five years, I hope I’m still on that path to a deeper relationship and that I’m able to communicate my experience with other people so that they can have a deeper relationship as well. And feel comfortable in that, in having that edgy, vulnerable experience of connecting with land and wildlife in that way. Hmm. Ariana Cano: That was great. Yeah. Five years. Well, I will check in in five years and see where you’re at. Bridget Butler: <Laugh>. See where we’re at. You might have to come out into the woods and find me. I think that Great. More time. I can do it more time in the woods. I know, Ariana Cano: I do. I love the just naming again, you know, the role that conservation has played in just becoming this very toxic gatekeeper to something that’s just inherently within everyone. Right. And the need for us to transform the way we look at environmentalism into more intersectional Right. Just like mm-hmm. <Affirmative>, we are part of it. We have and should have access, feel welcome no matter who you are. Right. Or where you come from type of thing. And I really love and appreciate the fact that you, you know, you’re on this path to like better yourself and understand what that looks like. Right. Cause I even, whether you fall into one category or the not, or the other one we benefit to a certain extent from that gatekeeping structure, but I think more and more we’re recognizing that it’s not sustainable. It’s not what we actually should be doing as humans and hopeful that people pick up on that. Yeah. I also love, you know, like the comment on what it means to be an environmentalist or a conservationist or saying like birder, like, you should do this. You should be this like mainstream. I’m like, you like nature, you probably do you drink water? You probably breathe there. You’re there. We did it <laugh>. Like, welcome to a club. Right. And like really taking away all these pretentious badges of honor of like who is the best conservationist? Who is the best environmentalist? Yeah. And really like to start changing the narrative that like we all are, we are humans. Bridget Butler: Mm-hmm. <affirmative> Ariana Cano: Right. So, there are many angles as to how we come about it. Bridget Butler: Yeah. So it’s telling those stories too, right? Like, I think that’s the other piece is highlighting work from people that, that our different ways of knowing, our different ways of protecting land, caring for land, Right. Being a caretaker of, of connection just keeps seeking out stories different from our own Ariana Cano: Yeah. Bridget Butler: And different from the, the, the traditional pathway. Oh my gosh. I think about that so much in terms of land conservation. We’re always telling that same story. And where are those other ones that maybe are a little bit more edgy, a little bit more uncomfortable? Let’s tell those two. You skip those Ariana Cano: Out there. Well, I think that the reason why we originally connected was me just shaming and saying that I do not care about Al Leopold. And I think that’s a very controversial stance, <laugh> to those of you that are not, you know, part of that group that we’re just educated with. Aldo Leopold, that’s the godfather of conservation. Yeah. I absolutely hated that because I never saw myself in an elderly Appold. Mm-hmm. <affirmative>, I didn’t understand what Wisconsin was. Right. Like, I’ve never been there. Sorry. So then, you know, evolving and meeting other people that are like, Yeah, this is what I like, This is how I connected to it. I’m like, Wow, look at that. Bridget Butler: Paying attention to that one little, right, that little thing you were asking me, you know, before how to start slow burning. I and you bringing up all the Leopold, There was something about that. His right, his readings, and writings being taught to you that just, it just is like sandpaper, right? Or like something gritty. There was something there. It’s paying attention to those things too. Pay attention to when it gets uncomfortable. What was uncomfortable for me that also became a big part of slow birding was the lack of women within, you know, the birding community. And especially women in leadership roles. So where are all the women and where are their stories? And so those little, you know, inklings, those uncomfortable things that rub you the runway are just, it’s like a bur right? Find that, pick at that, pull that apart, and ask questions about it. Right. Talk to other people about it because I think it leads you to this whole new space and, and a whole new awareness. Ariana Cano: Yeah. Well, Bridget, thank you so much for this conversation. This has been of the life as always. Bridget Butler: Same here. Ariana Cano: <Laugh>. I want to talk about the resources that you shared. So you talked about bird ability, right? Yeah. For people to check out. They can, people can find you online, right? Bridget Butler: Yeah. You can find me if you type in Bird Diva and you’ll find me. So I’m on Twitter, I’m on Instagram, I’m on Facebook. My website is birddiva.com. I love questions and I love audio snippets. Like, send me your wonderings. And that’s where you’ll find me talking about some of the courses and workshops that I offer as well. And yeah, I’m always learning. I’m always <laugh>. I’m just trying to be open to all of these ways of knowing and ways of experiencing and connecting in nature. So I love people’s stories as well, so I’m happy to listen to other people’s stories too. Ariana Cano: That’s great. And the same goes for, you know, the Nature Conservancy in Vermont. My name is Ariana Con Gomez. You can find our information online. We are one of those organizations that we want to hear it, we want to change, we want to, you know, really learn and be on the same path, path as Bridget. So this is also naming that I’m here open and welcoming to all for us to connect, talk about nature, go out in nature, and just learn as we grow within our own environment. Bridget Butler: Mm-hmm. <affirmative>. Ariana Cano: So with that, I think that’s it. Good job. You did great. Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

https://youtu.be/_97IYB8kcHc Dr. Winnie Looby and Dr. Kinda Abujbarah connect briefly about Dr. Abujbarah’s experience with cerebral palsy and how it led her to travel from Amman, Jordan, to the United States to pursue greater educational opportunities — and how COVID-19 has impacted opportunity at universities. “I wrote my whole dissertation with a typist in another state. So, technology and being able to work remotely, I’ve been doing that since before COVID, but I thought COVID might open more opportunities for me to work remotely.”     Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

https://youtu.be/Y5oE0jHJRjY Ming M. Canaday is a world traveler, podcaster, life coach, and entrepreneur. In this interview, we asked Ming about how her experience of living with a disability has informed how she approaches all those activities, and how exactly, her new app aims to help people with disabilities have better access to gas stations the world over. A full transcript of the episode appears below. Audrey Homan: All right. Thank you very much for joining me this afternoon to talk about some of your amazing projects. Would you mind introducing yourself and telling us a little bit about who you are, where you’re from, and what your relationship with disability is like? Ming M. Canaday: Yeah, of course. Like I said, thank you so much for having me on the podcast show Audrey. I am the founder of Traipsin’ Global on Wheels. We are a disability advocacy and tech company. So the overall mission, there’s three pillars, is general disability advocacy, adaptive fitness, and accessible travel, advocating for those things. So a little bit about me personally. I grew up in China up until age 11 and a half, and then I was adopted to the US around that time and I’ve been living here ever since in the US. I was in, at that time, a family in Oregon adopted me so I have been in Oregon for much of my life. In regards to my relationship with disability, I have polio and scoliosis and perhaps because of these disabilities, I was abandoned at a young age and lived in an orphanage for a lot of my life, about six or seven years prior to being adopted. And I will obviously never know the reasons, but I’m sure the disability has some sort of impact. Audrey Homan: When I look at all of the projects that you have either under your belt or in progress or just planned, it is jaw-dropping. So let’s kind of go through a few of those. Traipsin’ Global On Wheels focuses primarily on global travel and disability advocacy. How have your experiences as a traveler impacted the direction of that project? Ming M. Canaday: Yeah, great question. I think it’s definitely impacted the projects in major ways. I’ll go a little broad in general and feel free to follow up. So I think the projects are definitely much more global in terms of our outreach programs. I’ve done a number of collaborations with the US State Department in Malawi, a country in Africa, Singapore, in Southeast Asia, and China. And it’s also reflected on our podcast show where we have guests from all over the world, we have all six continents covered. You know, if Antarctica was populated, we would invite guests from there too. So also because of the extensive experience I’ve had with traveling, much of our resources, whether it be services or products, not so much products, but much of our services information are virtual online such as videos on our YouTube channel, podcast interviews, blog posts, and coaching programs, they’re all online. So that means that it’s accessible by everybody regardless of where they are in the world. And I hope because of my extensive background with traveling, our projects are much more inclusive and welcoming of diverse groups. I’m sure you’ve noticed that a lot of diversity initiatives do not include people with disabilities. It’s not included. Even the coaching book that I got recently, people with disabilities are not really included in their definition of diversity. And so just being much more mindful of that and getting the message out there, pushing it out there, be like, “Hey, we are the 1 billion that should be included in those diversity initiatives.” I think those are the major broader impacts. Audrey Homan: Your podcast has so many episodes already. Did it originally, did Traipsin’ Global On Wheels originally start out thinking that it would be a podcast? Or did it just kind of organically evolve and you found your way to podcasts? Ming M. Canaday: It was pretty planned out in terms of the mission from the beginning. But the podcast was certainly the intention and one of the resources we planned to offer from the beginning. So that was very intentional because you know, me as a person with a mobility disability, I use a manual wheelchair to get around. And so, like many other people with disabilities, I don’t really see a lot of people with backgrounds that are similar to mine and I wanted to change that. Or little girls and boys and adults like myself who wanted to see people leading lives from our vantage point, whether it’s a mobility disability like me or some sort of auditory disability or any number of disabilities, our purposes for Traipsin’ Global On Wheels obviously the main focus is people with mobility disabilities, right? Because that’s what I have the most experience in, in terms of personal experience and professional experience. And so that’s the focus of this platform. And just overall, this podcast serves a number of purposes. It was certainly in the blueprint of Traipsin’ Global On Wheels to release a podcast show. Audrey Homan: I’ve noticed that Traipsin’ Global On Wheels also encompasses fitness and health. How do you see the relationship between those and the accessibility of travel? Ming M. Canaday: Yeah, I think there are definitely a lot of links there. So I’ll just cover a little bit from my narrow focus. So I think in order to travel extensively or even just a little bit you need to be relatively healthy and fit and feeling good and feeling active. And so that’s where fitness comes in. If you really wanna link the two of fitness and travel, I haven’t really quite thought of it that way, but I think in terms of the relationship between accessibility and global travel one thing about the mobility disability population at least, we leave relatively sedentary lifestyles and that has a lot of native ramifications on the health front. And so that’s where fitness is very important. Our organization is called Traipsin’ Global On Wheels, so for me, I’m always thinking about international travel. But you can think on a smaller scale of traveling outside your house, driving to the grocery store, traveling to the next town over, you have to have the energy and have the fitness level. And to me, getting in a car is actually quite, it’s not a super easy process for a lot of walking ambulatory people. I have to get in the car and then load my wheelchair into the car and that process because I don’t have a ramp for my car, so I have to lift it up. Even with the lightest wheelchair I’ve had in recent years, it’s still quite heavy, it’s still 20 to 30 pounds. And in order to lift that much you have to be at a certain fitness level. I think a lot of, perhaps veering a little off topic here, I think fitness for people with disabilities is even more important than for able-bodied people. And just talking from a mobility disability, remember that as you’re listening to me, my perspective is from someone who has a mobility disability. So especially for people with mobility disabilities, we need to use our arms to lift out, to carry a lot of different things. It has to make up for those, for wheelchair users anyways, I know that within mobility disabilities, there are different types of disabilities within that group as well. So for wheelchair users, we have to basically do a lot of things that our legs are not able to do. And so that tells you how important fitness is. But just going on a couple tangents here. I think more gyms need to be accessible regardless if it’s people with mobility disabilities or some other type of disability, there are many different types out there. I have had friends, acquaintances, and even myself going to gyms and noticing how inaccessible it is. Mainstream gyms, I know during this whole COVID period over the last couple of years, online platforms and online fitness resources have become really popular like Peloton or some other company. They don’t really have fitness training programs accommodating people with disabilities. At least not from my standpoint as a person who is an active wheelchair user and active person who has a mobility disability there are not very many online fitness resources for us. And so I would encourage more accommodations and resources on that front. Anyways, that’s going on a bit of a tangent, so I’ll let you continue Audrey. Audrey Homan: I think it’s a really timely tangent though because I’m aware that right now there is a fairly high-profile case that’s being talked about on Twitter where there’s a user with sight-related vision disabilities who tried to sign up for her local gym and requested specific accommodations for her service animal and the gym shut her down entirely. They just weren’t willing to have any type of conversation about that. And I think it’s really a timely topic to talk about how gyms are inaccessible sometimes along so many different axes. Ming M. Canaday: Mm-hmm. <Affirmative> Audrey Homan: Right? There’s so many different ways that they fail. Ming M. Canaday: Mm-hmm. <Affirmative>. Yeah, exactly. It is definitely, more can be done. I’m not even quite sure if I know there, from my point of view anyways, very weak attempts made, but even those instances are few and far between. Audrey Homan: And you talked a little bit about some of the programming packages that go along with things like Peloton and the prepackaged fitness apps. And I’m aware that Traipsin’ Global on Wheels is itself coming out with its own app, which I believe is called Fuel Access. Can you tell us a little bit about what that app will be like and what kind of services it will provide? Ming M. Canaday: Yeah, I would love to. So it hasn’t come out yet, still in the development phase and taking a bit longer than we expected, but better to release something good quality and useful than rushing the timeline. So it’s a community-based review app that reviews gas stations specifically on their accessibility features for adaptive drivers. For drivers with disabilities regardless of what kind of disability you have. So the more people that use this app, the better once it’s released. Because it is a community-based review app where you drive to a gas station and then you look it up on our app and you rate it and give us a little bit of feedback on what you thought in terms of accessibility features, in terms of the kinds of customer service you were offered, in terms of just anything you would like to add that made your experience amazing or horrible or anything in between. So that when other people need to fill their car up with gas, they can be like, “Oh, you know, 30 people rated this gas station near my house and said it’s really accessible. I think I’m gonna go to this one compared to this other one that has no ratings at all or has really bad ratings.” So it’s very informative on that front. So it’s kind of like Yelp except for gas stations. Audrey Homan: I think that’s such a smart idea for an app. There are so many different landscapes of accessibility around gas stations, it’s such a universal need right now. And this idea of crowdsourcing a layer of information to kind of lay across the landscape, I think could be such a powerful key to unlocking more experiences for people. Ming M. Canaday: Mm-hmm. <Affirmative>. Yeah, it is. During COVID as we mentioned over the last couple years, where people are inside more and for those of us who drive, it would be extremely helpful to know accessible gas stations out there. And I think this kind of model could be followed in all sorts of ways, right? Not just concerning gas stations but I think this one is a good start though. Audrey Homan: I will not be surprised at all if we check in with you next year and it turns out that Traipsin’ Global On Wheels has developed a second app that is the exact same crowdsourcing model, but rating gyms to it. Just kind of expand that idea. It’s just so clever. Ming M. Canaday: That would be amazing; thank you, Audrey. I appreciate that vote of confidence. Audrey Homan: And on top of all this, you are a published author. You have a children’s book called The Dreams of Little Miss Aeva. What is this book about and what is your vision with this book? Ming M. Canaday: So, it’s basically helping people, helping small children get exposed to disabilities early on in life. But this book particularly addresses people with mobility disabilities, specifically children with mobility disabilities and their dreams and how just because they have a mobility disability and use a wheelchair, that does not in any way shape or form make them less than or unable to reach their dream. Whether it be their career dreams or any other types of dreams that they may have. And so it goes through all the different career paths things that they can do when they grow up from a little girl’s point of view, a little girl who uses a wheelchair. And so I’m sure many people with disabilities, especially those with mobility disabilities because it’s pretty obvious. You know, for me, I use a manual wheelchair, so when people first meet me, they’ll notice my disability right away. It’s quite obvious, as I said earlier. So children particularly make all sorts of inappropriate comments. I’m sure a lot of you have heard “Mommy, what’s wrong with her?” “Daddy? Why is she in a wheelchair?” And you know, it affects some people more than others. I have some friends who it just doesn’t bother them at all and then others, you hear for the thousandth and one time, and it’s grating. And so minimizing that stigma and prejudice and having children be more aware; and not just children, right? Because if children are exposed and the adults explain the diversity, the full diversity that includes disability, then children will react in a more sensitive, compassionate, and kind way when they see someone that’s different than them. Whether that be someone in a wheelchair or using a crutch or hearing aids or whatnot.  So it has multiple different functions but I would say some of them include showing that people with mobility disabilities can do anything in life. The second thing I would say is to decrease the inappropriate comments, particularly in this case, since it’s a children’s book, by children, by exposing them to disabilities at an early age. Overall to reduce stigma and prejudice, particularly from the point of view of early childhood development through the kind of resources and the literature they’re exposed to. And for those of us with disabilities, I know when I was a little girl, I would’ve loved to see a book like this portraying people with disabilities in these picture books, in these children’s books. That would’ve been such an empowering experience. Audrey Homan: Little Miss Aeva from the very first page, she’s such an active protagonist, you know? She doesn’t wait for anyone to wheel her about, the first page is her wheeling herself off, away from her mom. Is she drawn from anyone in your life or did you just kind of sketch her out of thin air or whole cloth? Ming M. Canaday: I don’t really want it to be based on any particular person, but I do have to say, a lot of it came from personal inspiration and my own background. The Dreams of Little Miss Aeva, the Illustrator is a really good friend of mine and so I didn’t intend for this but when she illustrated the book because she knew me so well and we grew up together, she drew it to look very much like me. And so that pink shirt that you see, it’s actually a shirt that I wore all the time when I was younger. But I don’t want it to be narrowly just about me. And so I hope that a lot of people who are wheelchair users, especially little girls, can see themselves in that character. Audrey Homan: You are such a multifaceted entrepreneur and you have so many projects that you are juggling and pushing forward. What so far for you has been the most challenging aspect of all of these projects? Ming M. Canaday: Well perhaps it’s unexpected, but I think for a lot of, for some multifaceted entrepreneurs, going in all of these different directions may be very exciting and stimulating. But what I’ve learned over time is that it’s important to find which single project you most passionate toward and tackle that one first. It doesn’t mean you can only tackle that one, but only giving priority to one or two projects at a time, and not all of them at the same time. Cause you can get burnt out easily and also you’ll lose direction. Of course, there are some positives in that. There’s always something to do. There’s never a moment where you’re just like, “Oh, what should I do?” You’re always busy. But I would recommend that for my personal experience anyways, narrowing down the focus really helps. And of course, for those of you who like to juggle a bajillion things at once and find that very thrilling, by all means. But I think in order to push a project far in a way that doesn’t sacrifice quality, it’s better to do one or two at a time. Audrey Homan: Speaking of one or two at a time and focusing on one project, you have a brand new project coming out. You are about to launch a life coaching service where your main niche is people with mobility disabilities. Could you tell us a little bit about this service and what problems you’re trying to resolve with the service? Ming M. Canaday: Yeah, of course. I think a lot of people with mobility disabilities, which will be as in the nature of the question you just asked, the main niche. People with mobility disabilities who are relatively content with their life, but would like to move further and would like to be doing more in terms of maximizing their full human potential and serving as many people as they can. It’s for that group of people. And a lot of us active, ambitious individuals with mobility disabilities face a lot of things that are not talked about a lot, in the mainstream anyways. And depending on how big your circle is, and how many kinds of people with mobility disabilities, if you have a lot of friends who are wheelchair users, perhaps you’re more exposed. But I know some of the big issues, well perhaps not big, big is not the right word, but common issues we face as a group is infrastructure inaccessibility. I know I encounter this all the time as well as other wheelchair users, users that I’m exposed to in my circle. That’s always a challenge regardless if you’re getting in a car or going into a restaurant or going to the store or the holidays are coming up and you’re traveling to family. And I know that this particular family member’s house I’m traveling to is not very accessible at all. And I have to drag my wheelchair up and down and these things are not uncommon, you know one of the options that was proposed to me was staying at a hotel but the thing is, the rest of your family is at this house. And so with you being at a hotel by yourself, that’s not a great feeling either. And I know that people with mobility disabilities face a lot more serious consequences from these infrastructural issues than I am even explaining right now. So this coaching is for people who are encountering these types of issues, attitudinal challenges, you know when people first meet you, especially speaking personally from my point of view as a person who uses a manual wheelchair, people can tell right away so they see you with this certain light. Not everybody obviously, but a lot of people do. They see you with this like pity, random strangers. I know my friends have brought this up to me, people come up to you and say inappropriate things like “God has a plan for you,” et cetera, et cetera. Things that are much more inappropriate than that even. People who are being patronizing or overly comfortable around you, even though you barely know them or don’t know them and like putting their arm or whatever on your wheelchair or other parts of your personal space that is not welcomed. And so this is the niche that I am trying to reach to help talk through these issues and talk and how to go about confronting them and moving forward to reach their full potential in serving as well as they can to their community, to this planet overall. Audrey Homan: Attitudinal challenges is such a great way to kind of encapsulate all of those problems that folks with disabilities sometimes encounter just coming from other people. It’s such a huge and under-talked-about component of accessibility. One of the things that I’m wondering is can your coaching service help people without disabilities as well? Are they part of the equation that can be addressed here? Ming M. Canaday: Yes, definitely. Especially allies of people with disabilities. This goes with coaching for people with mobility disabilities, the main niche as well. But you know, if after a consultation strategy call and we’ve talked through some of the problems that you’re looking to work through and it seems like a good fit and like I would be someone who is in a good position to partner with you on resolving these issues, then of course. And like I said, we’re just launching the program and so as any early projects businesses go, we do welcome…I’m trying to phrase this not in a way that seems like it’s open to everyone because it’s not. But definitely feel free to still apply and inquire and do a free consultation strategy call and see if that’s a good fit. Audrey Homan: Okay. That sounds like really good advice for kind of finding a niche that works both for your coaching service and also for people who are looking for very specific support with improving access in various places in their life. Ming M. Canaday: Mm-hmm. <Affirmative> Audrey Homan: I don’t wanna keep you very much longer, but I have two more questions if that’s okay? Ming M. Canaday: Yeah, of course. Audrey Homan: So question number one is what so far has been the most satisfying aspect of all of these projects? Ming M. Canaday: So I think the podcast interviews have definitely been very satisfying talking to people from all over the world from Australia to South America, to countries in Europe to amazing advocates here in the United States. And all these interviews are free online. And many of them are with people who have mobility disabilities and other types of disabilities. So if those of you who want to go and check it out they’re free on all the platforms, Spotify, Anchor SoundCloud. So I encourage you all to go check it out. Audrey Homan: Outstanding. And we will put links to the podcast and to your YouTube channel and the Traipsin’ Global on Wheels homepage in the transcript for this podcast. Last question, is there any question I have not asked you that you wish I would ask you? Ming M. Canaday: I think you’ve done a great job, Audrey. We’ve covered a number of different things, thank you so much. Audrey Homan: Thank you for being so generous with your time. You are so busy and productive and I really appreciate the chance to sit and hear about your journey and about all of the different projects you have going on. And I wish you so much success with all of your new endeavors. Ming M. Canaday: Thank you; thank you, Audrey.   Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

On this episode of the podcast: a conversation between Dr. Winnie Looby and Dr. Sefakor Komabu-Pomeyie. Dr. Komabu-Pomeyie recounts her experience of disability, from contracting polio as a child in Ghana, to a tragic accident that impacted her mobility, and how the support of her mother and her faith helped position her to grasp hold of educational and entrepreneurship opportunities. https://youtu.be/OfNnAMZ_1oU A full transcript appears below. Winnie Looby: So good morning, Sefakor. Sefakor Komabu-Pomeyie: Good morning Prof. How are you? Winnie Looby: I’m good, I’m good. So our first question is could you share a little bit about your personal connection and experience with disability? Sefakor Komabu-Pomeyie: Thank you. Prof Looby. Yeah. My personal connection well, anytime I have a question like this, I always ask myself, where do I start from? So I got polio at the age of eight. So in other words, I have walked, or danced, or jumped before, or ran before so in a very fast moment, then I became paralyzed because of the polio. I got polio even though my mom or we had a polio vaccine, I was told it was expired because the then government hoarded the medicines. So it affected me so I’m paralyzed in my lower parts. So since eight, oh, let me say eight years now, I have been sitting down for some time now, that’s what I say. So I got polio physically and I am not able to do any other things. But I walk a little bit with braces and crutches back home in Ghana. Then the worst happened because the polio affected my left hand – my left leg, sorry, and my right leg, which was very strong for me that I used to jump over and do so many things on became my baby leg. Just because that was during my first degree at the University of Cape Coast. I was going for lectures on the top what we call the SRT top, which was the third floor. And one of my crutches got broken in the process of climbing up and I somersaulted. I fell from the third floor to the down, and I actually broke my kneecap on the right leg. In other words, the strong leg that was really my life and my everything, because those days I was using the braces. I was using the braces on the left one to support the right one so that I could walk with the braces. So since that time, 2006, I had never been able to walk again just because my kneecap is shifted and that is my baby leg because I’m not able to stand up anymore. Even though when we went to the hospital, they looked at the knee. There were two issues, so dicey. One was, we didn’t have knee specialists, and two was even if they would try, it might not be the same. So the advice is I better just sit down. So that’s why I now use a wheelchair or scooter anywhere I go, just because this leg pains me. I still feel the pain, I’m not able to stand on it because the kneecap is at a different place so yeah. So that is how close I have touched base with disability and I have lived all my life dealing with issues of disability. Winnie Looby: Thank you very much. Sefakor Komabu-Pomeyie: Thank you. Winnie Looby: So my next question is, I’d love to hear about your work, that you have your own nonprofit in Ghana. Could you talk a little bit about that? Sefakor Komabu-Pomeyie: Sure. Thank you for that question also. Yeah. You know, one thing we always say is ‘nothing about us without us.’ About disability, we have a lot of people working with us on the road to make things work. I became so much, let me use the word aggressive, in this context in disability issues in Ghana when I realized that even at the highest level of education, that was where I got my disability more complicated and without any support. Because when I fell at university, they sent me to the hospital. Not the university, but friends. And all my trauma, all the things that I went through, nobody knows, nobody cares because there was no system there to support people like us on campus. I had this happening there, even though I had my first disability, which was another trauma because when I had my disability, that was the piece of the juncture at which my parents got divorced because to my dad, I became a ‘curse.’ That is a cultural issue there because in my culture, when somebody has a disability, that person is perceived as an object of curse. Anything evil, it’s you. So, even though I must go back a little bit though, my name Sefakor means somebody who makes you happy when you are sad or depressed. When you see me because my parents were happily married, wedded, and interestingly, they were bargaining. At those days, my mom told me how they were bargaining on names. Like, if I should be a boy, I will be this name, if I should be a girl. And there I popped out to be a girl. Both of them agreed to give me Sefakor because I am their joy. But on a contrary, I became the cursed object. Immediately at that eight years that I got polio, I became a cursed object to my dad. And the easiest thing he could do that time was to run away from us. He just wrote on a paper and put it on a table for my mom that morning and left. It said, ‘I can’t live with that thing.’ And that thing is me, right? So I had those traumas with my mom already. She was struggling as a single mom in a community which always looks at people who are different in any case or disability of any type. Let’s not talk even about invisible disability because we don’t even know them. So I had physical disability, all of a sudden the joy, the Sefakor girl who is the one to brighten everybody’s corner, became the cursed object. And that was a trauma already. Anywhere that we passed through, my mom and I, we never had it easy. And I climbed the educational ladder. One thing my mom used to say about this situation, she would call me every morning as young as I was, and I grew up with that. I must also say that I grew up with my mom being a Christian. So I am brought up with Christian values. And that is one thing that stood out very strong for me, and I grew up with it. Why? Because everybody around me sees me to be a cursed thing, right? During those days I didn’t know because my mom, I would say my mom up to today, even though she’s late, I lost my mom in 2018, but I always say my mom, because I can see her still alive with me. So even though that time, her education level, she was a mere librarian, right? And she doesn’t have enough, or she, I mean, in terms of education, she’s educated to that level. Winnie Looby: Mm-Hmm. <affirmative> Sefakor Komabu-Pomeyie: And that time, people who had disability, you might either find yourself in the way of, they would throw you away in the evil forest in the sixties and seventies or they will hide you. They will lock you up. But there was this woman who would carry me outside on her back as long as I was at the age of eight, very tall. And she will carry me on her back and still make sure that she sent me to her library to put me under her table. As she was going through her daily chores or daily activities in the library, she would put books around me to be reading, even though people around, I mean, frowned at it. ‘This girl must be locked inside. When you are coming to work, you mustn’t bring this girl to work.’ You know, that was the environment. And she will sit me down every morning before we left home, she would sit me down, ‘Hey, Sefakor, you are a child of God. You are created in another image of God. This is a different image. You are a different image. You are beautiful. Everything around you is beautiful. You are my child who was running, and you are still my child who is sitting down here.’ She will pump those things in my mind every single day in the morning, and she will give me a mirror like this. She will give me a mirror, like, ‘Look at yourself, look at you,’ and she’ll be tapping me. ‘Look at yourself. You are so beautiful. Oh, my daughter, you are so beautiful.’ That was how my mom psych me. She psyched me that I’m so valuable and she always said that you know what? You can always add value to yourself when you go to school, when you read, when you know everything. When you add value to yourself through education, people will also respect you and add value to you. I started growing up with that counsel or whatever I will term. I mean, whatever I will term it whatever food thoughts every day that she was giving me. I was swallowing that pill every single day. And I grew up to be a teacher, professional teacher of French. And I found myself going to the university to the last year of my first degree because to me, I had to do it to the highest level. That was the vim in me, or the passion burning in me to be at the top of educational issues. As my mom said it, then all of a sudden I broke down at the university level, and the first thing she actually said was, ‘I don’t know if I have ever recovered from all the trauma from childhood before this one. Because as much as I climbed the educational ladder, I was becoming more disabled, or my complications were becoming more complicated or unbearable in, in any case. So at that time that I fell, it was a double agony. It was a double agony because I was at the highest level of education for me, my first degree that time 2002 to 2006, that was when I entered the university. It was one of the biggest things in our lives, those days when money to get to the university. So for me to get this disability complicated at that level, it became hard not for me to crack. And I will say that actually struck the cord for me to do something about this situation when I was at the hospital when they were going back and forth and they told me that they can’t do anything about me to get me back on my feet because it is so dicey. Operation, no specialist and then even if there should be, because I’m grown my bones are strong, it to be very dicey, it might destroy the leg totally. So I better sit down and endure the pain. That’s why I still feel the pain in my right leg. Now, at that point, I realized that something must be done. That was when I started talking to people around some my friends, some my professors, and the community, like we had, or we have what we call policies, conventions here and there working for us as a country Winnie Looby: Mm-hmm. <Affirmative> Sefakor Komabu-Pomeyie: And we know that people with disabilities are not valued already, but on the international front, we actually have things or instruments that we talk about easily to say they are working for us. So in short, that was when I started mobilizing the people. When I came back home, I started mobilizing people in my community in Nsawam about disability issues and it was very fast. That time there was this common fund established by the government that is the Disability Common Fund, we call it DCF. The DCF was to relieve the people with disabilities from poverty. And interestingly, when I got there because that was where I was posted to work in the education office, the Ghana Education Service Office as the resource center coordinator. So I was working with every student, every child with disability, that time across the whole municipality. And that was the biggest deal for me, going through my pain myself, and seeing the children also suffering. And politics is played around here differently, that, oh, we have a common fund working for everybody, and students can assess it. Those who want to learn trades, like tailoring, seamstressing, hairdressing, all those craft at work, they can assess it. But my people were still on the ground. They didn’t even know about it. You will hear it in the media that we had this policy, we have this fund. And I was like, wait a minute. I started diving into that gradually. As I go on the field and see the children suffer. Some were locked up because the parents are not even mentally I mean ready to release their children to be seen in the open. Then education is calling them that we are, I mean, we have created places for you to come to school, schools which are not accessible, right? Then politics is also on the other ground. So I was in that situation, learning all these pieces and putting them together, and that was when I put my people together. There was one strong requirement, that we needed to put ourselves together as a community of people with disabilities. Winnie Looby: Mm-Hmm. <affirmative> Sefakor Komabu-Pomeyie: That was the recommendation by the government. If you want to assess this fund, people must exist in that group. There, the beginning was very effective for me. I talk to people in the houses. I told them I go to school with my other colleagues who are in the education office where we go for what we call a SPAM, school performance appraisal meetings. We go with them. After doing that, I ring, I make them ring the bongo or the bell, and I show myself to the student and ask them, ‘Do you have people like me in your homes, in your communities? Tell them to bring them to our office. I’ll register them.’ I started registering these children with their parents, and also those who have actually grown and put them together and we founded this organization. But the interesting piece is, we needed the fund. The fund was what we needed to actually assess. And I started out the processes and it wasn’t that easy because there were blockages here and there, and I started going on air. Interestingly, when people realized that I was putting these people together, there were other like-minded people who I call the destiny changers at the point for people with disabilities, because they’re big men. They have money, they are in the churches,  they will call me back, ‘I think you can do this, and I want to support you.’ You know? So I started going to small radio stations talking about the pressing issues affecting children with disabilities in the house, in the school system,and how the government says, this are in the school system, which don’t exist. And I started talking about those issues through the media on the radio. Then before I realized, I see myself on the TV. That is how I metamorphisized to the media, and all of a sudden I see myself talking about these issues, basing most of the facts on my own experiences and the professional work I was doing in the communities with children with disability as a resource center coordinator. And also noticing the people who I work with who have no power because disability has nothing to do with them because they have no idea what we are talking about and putting all those things together. One day I was on the TV station and somebody sent a call that the people that was Ghana television, we call it GTV, and talked to somebody, that after my presentation, the person would like to see me. And that person, not to see me physically, but to talk to me. So they gave me the number. I called the person, and the person said, ‘I think what you’re doing, you can do it very much professionally. Do you want to go to school?’ And I was like, ‘Yes, I need to go to school, but I don’t know how, because now I all I know is I’m in the media and I was excited.’ And the person was very clear that you know what? This is the link. Write it down. This is Ford Foundation, International Scholarship and I think you need to do that, especially because we can support your work so that you can do it professionally. Professionally was the word. And I can assure you, that was the change or that particular discussion brought a change in my life to date. Because I went online that evening and that was the last day of closure of what the application. I applied, even though they asked for references, but which should be followed by, because I have connections with my professors and people who are my directors, who know what I was doing. The reference should have gone with it immediately, but because of time difference, you know, Ghana was ahead of US. Not was, Ghana is ahead of US five hours, four hours and that was what saved me. I applied and sent the message to my reference list that time. And immediately the following day, they got to their offices and they wrote their references for me immediately. That is, I always say that it is God’s own divine favor on me because I had it immediately. You know how reference attatched, it’s so hard for us to give references, especially when you don’t have time. Right? But my director gave my professors give, and that actually brought me to the US to do my master’s in policy analysis and advocacy. My first degree was basically French and English because I was always on French level. I was targeting to go to France. You know, that was one thing. But immediately I realized that I needed to shift my mind, everything around me. I needed to enter policy issues because policy was there and that was not effective or implemented. So for me, when I got Ford Foundation Scholarship, that was the greatest thing for me to do, or to learn this and know how I can apply it on the ground. So in short, the work that I do, I will say, and I must also mention that SIT, School for International Training, has also played a very big role in my journey, because when I came to learn at SIT, I changed so many things because things that I was fighting for in Ghana, in terms of inaccessible situations of school environment and all those stuff for my, myself and my student, I came to do the same thing here. But the good thing is SIT, the leadership had a very open mind to solve problems. You know, that is the direct opposite of what I was dealing with. I mentioned things which weren’t done, and they did it to make sure that people with disabilities are included in that school. And interesting, when I was leaving, I want 10,000 US dollars award from SIT, which helped me to officially register my organization and establish it very much or ground it. Because what happened was that award expect me to do something back home that I was talking about. So in my thesis by then, I was trying to make sure that schools are so much accessible. And one thing that I asked in my proposal as we had to give these three minutes pitch those days and win the award, or the very big platform in South Carolina, I went to do that and won the 10,000. I wanted to retrofit schools in Ghana, make them accessible for children with disability. And those are public schools to retrofit them. And I did that. But before I even, I registered my organization, I had a mentor, Peter from here, SIT, who followed me, came to Ghana, stay with us for three months to really walk me through the process of NGO and working with people in the community professionally and also international level. So those were the channels that I passed through, and I registered my organization as much as possible, established other branches to make sure that things that we do in our municipality also go to other areas of Ghana. So, in short, if you ask me about my organization, this is the story around. I really wanted you to know that it was a real journey. And people who helped me were just church members or community members who actually were pulled to my vision that I was bringing a change around. And the fact that me being a person with disability, they believe in me because I am doing the actual way that I talk about walking the talk in the process. Yeah. Winnie Looby: That’s an amazing story Sefakor. I didn’t know all of that. That’s so cool, that’s so cool. Sefakor Komabu-Pomeyie: Thank you. Winnie Looby: <Laugh> Sefakor Komabu-Pomeyie: Thank you. Winnie Looby: All right, so that actually connects to my very last question. I wanted to hear about your summer course, your new summer course at UVM. Sefakor Komabu-Pomeyie: Yay, that’s a fun piece of it, right? <Laugh> Yeah. The summer course, global disability studies has been my heartbeat so far. Especially when I came to UVM, all the things that I work with with people, the community that I found myself in. Winnie Looby: Mm-hmm. <Affirmative> Sefakor Komabu-Pomeyie: Has actually given me that exposure to also add value to UVM. That is how I see. So this course, global disability studies. Having taught courses like culture of disability, EDSP 5, and then also race, policy and racism. I realized that we have to take this to what the next level in terms of disability issues globally. You know, one thing that I know very much now is we are all talking about inclusion, inclusion, inclusion. But I think there should be a shift of, the shift should be around systems change or system power change in terms of global issues. So here is a piece, global disability studies has a very big part, which is advocacy. I see this piece of course not lying on the shelf of UVM or anybody’s shelf, but because these students are going to have a touch or a feel of how issues are outside the US system. Why we have so many people across the nation or the continent that are going to be part of this course. Like my colleague, policy analysts and advocates of disability issues in Kenya, Tanzania, Uganda, Nigeria, like East Africa, West Africa. And I’m actually connected with others, Asian friends of mine to expose us to their systems there. How they are working in line with the UNCRPD, that is the UN Convention of the Rights of People with Disabilities. Which seems to be the universal tool for every continent except the US because the US hasn’t ratified, right? Winnie Looby: Mm-Hmm. <affirmative> Sefakor Komabu-Pomeyie: So I try to expose us to this particular univresal tool. Winnie Looby: Mm-hmm. <Affirmative> Sefakor Komabu-Pomeyie: Connecting it to the individual disability policies that we have in our countries, and see how best we as students and workers, professionals can work with those people who come to us here. You know, somebody’s an immigrant from Nepal, from Uganda, from Congo, Vermont is full of immigrant populations. The policies there, for instance, we, in Ghana, we have disability acts, what we call ACT 715. Uganda is very much strong, they have implemented accessibility policies, and they are working on the ground. Nigeria, the same people are working using the universal toool connecting to the SDGs, and especially making them, connecting them to their individual laws in their countries. Bringing that home to the ADA, we want to see how we can connect all this new knowledge around the globe to our ADA here and see if what we are holding onto, that ADA is very much working for us as entities or as a country, and therefore we can’t ratify the UN convention. Now, the piece of it that is the advocacy piece. Any student who has this exposure would definitely see the differences and connect to other, what global issues easily and can be able to join those of us who are fighting for ratification of the USCRPD in the US system. And the second piece of it is I want this course to be very close to the people, very close to the people who are immigrant population or who are even professionals who are working with this immigrant population. Just because they are not culturally competent in some of the disability issues. This platform will expose them to see some of the things that they might do and not do, the dos and don’ts. And one thing that I got to know as a person who came through as a international student, it is very hard for us to get what we call reference. Common reference, common reference from professors. At times, until I got to the highest education or the my PhD program before it was easy for me. But I realized that in my process to get reference, it was hard not to crack at times. And let alone, as I worked with the communities of immigrant population, I got to know that it’s even worse in their situation because they don’t even know how they will penetrate through the system to enter college when they want to go to college. So at times there will be, I mean, they will devalue themselves that they can’t go to college because somebody, they don’t know how college courses look like. They don’t know how somebody can recommend them, that you can do the, you know, as I talk with people on the ground or the grassroot level, I realize that this is a course which can be an opening to anybody who wants to know more about disability and globally himself or other people or herself and other people. And the fact is, as much as they know all this things, what next, that is the piece for me. It is change oriented. This course is change oriented because of the advocacy piece that some people don’t know what we call advocacy. Yes, they’ll be exposed, exposed to advocacy at times. It’s about you, yourself even knowing who you are, because some people don’t even know themselves, which they can’t, what we call the self-advocacy. They don’t know it. So they can’t talk to issues themselves because they have disability and because the society tagged them like that, that you are a person with disability, you cannot do this, they accept it. This is a course that you come, we talk about it openly. And then the next level is, are you able to talk on behalf of others, which is the advocacy piece that can change the systemic barriers or that can remove those type of things that systemic barriers that we talk about openly. But the fact is, it’s open to everybody. This course, it’s open to undergraduates and graduates, professionals. People who want to know about global issues concerning disability policy and advocacy, and how we can communicate that culturally across the nations and between or among us in Vermont. It’s about knowing the people we serve, K to 12, we want to see if we are really serving our children who come in with disability that we don’t know how to handle them. Because some of us, we don’t even have the name for the type of disabilities that we have. In my language, we don’t have what we call dyslexia. So if a child comes in and you pull such a child out that you are on IEP, that child has no idea. Or even the parents do not have the content, what you are calling IEP. So this is a course that we have open discussions, open analysis, critical thinking, and bringing them back to their root to know that you might want to be more culturally responsive, more culturally competent, to work with the people on the ground so that we can make the change that we talk about. So global disability studies is all about learning more outside the United States and then connecting it to policy and practices on the ground. Winnie Looby: Nice. Nice. Sefakor Komabu-Pomeyie: Thank you. Winnie Looby: And there was, there was one more thing I wanted you to emphasize too. I remember looking at your syllabus that there’s this optional piece where students, once they take your course, they could travel to Ghana to work. Sefakor Komabu-Pomeyie: Yeah. Yeah. So, you know, the course is online. Winnie Looby: Mm-Hmm. <affirmative> Sefakor Komabu-Pomeyie: Which is asynchronous, which is like everybody’s expected to do this work within his or her time, Which one strong framework that I’m using, which I should have even talked about earlier. I’m trying to use the UDLs, Universal Design Learning, connecting it with what we call in Ubuntu, the community life of people with African generations especially to see how we can look at Africans. As much as they are connected in everything, but where we got disconnected from everything, you know, and then America system, which is individualistic already, and trying to disconnect from so many things. So in terms of UDL, trying to bring all together with Ubuntu, making sure that things that we talk mean the same to us as we align them to policies and practices. Now if we are able to go through all this very much genuinely, diligently as a class, and everybody plays his or her part very well, there will be that taste. I know very well that, that the taste, or they will be thirsty of going to see this practically on the ground. Winnie Looby:Mm-Hmm. <affirmative> Sefakor Komabu-Pomeyie: They will be trying to connect their feet to those grounds that we talk about. So there is this piece of traveling outside the US which might be open to people who want to in the future, after taking this course. What I call the study abroad program, which can be an exposure for people who want to learn about disability and education in the ground in Ghana, which is very much a very, a secure place, a safety place for them to have a feel to touch base with what we call disability and poverty, disability and education, disability and policy. Disability and anything that you want to work on especially valuing and accepting or appreciating what you have in the United States. I know some people don’t know what they have. They have no idea the value of the things that they have here, so they don’t add any importance to it. If you have that paradigm shift and know that people are still crawling on the ground and going to school, and as they go to the school, they don’t have access to bathroom, they have to crawl to the bathroom to ease themself. I mean, mess up in somebody’s pee. I did that. I went through that myself. Those days that I was going, I started school crawling. When I didn’t have the braces immediately, I needed to go and walk into somebody’s pee before I peed myself. And that is a situation that we go through, but we made it to what, this level of PhD. That is the piece that when you go down there and see life with your own eyes and you see how the people are very much passionate about changing things in their lives, changing things in their situation, changing things, and holding onto universal instrument, what the global environment is working on, like UNCRPD. When you come back, you will join the movement and say, we need to ratify this particular convention as a universal, as a whole America issue. And that is the piece that we must try to now think collectively because anything that affects anybody, as we say global village now, it affects us too. So I think that piece of it, traveling outside will be a great piece for me to lead people who want to do more about disability and just have another context and see, and do that type of comparative analysis and bring out some critical thinking. At the end of the day, we can make the changes that we want to. Winnie Looby: Wonderful, that’s so wonderful. I really enjoy talking with you Sefakor, this is great. This is really a treat for me. Sefakor Komabu-Pomeyie: Thank you. Winnie Looby: Thank you very much. Sefakor Komabu-Pomeyie: Yeah, thank you. I must say this is a great privilege for me also to have this chat with you. I know we have been together for so many time, but if nothing crops up around this, we don’t talk about these things. You know, and I know when I’m talking about this, I go back to my memory lane and I become so passionate at times, and that is one thing about, yeah, living the disability and working towards the change that we want. So thank you so much for this great exposure. I really appreciate it, thank you. Winnie Looby: Yeah, absolutely.   Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

In this episode of the podcast, renowned early intervention nurse / complex needs parent Rachel Wright joins Pamela Cummings, from the I-Team Early Intervention project. They cover Wright’s journey from medical professional to mother, and specifically what she’s learned from being the mother of three sons, one of whom is a child with disabilities and complex needs. What can other parents learn about negotiating the journey through the medical jargon maze? And how can medical professionals be better partners to parents and other family members? https://youtu.be/imWP6f60B18 A full transcript appears below. Pam Cummings: Okay. Hi Rachel. It’s nice to see you today. Thank you so much for joining us for our Center on Disability and Community Inclusion podcast. I am Pam Cummings and I’m the physical therapy consultant and project coordinator of the I-Team Early Intervention Project. We are a project at CDCI. Our role, we’re interdisciplinary. There is me and an occupational therapy consultant and a communication consultant and a family support person. We support early intervention teams who are working with children who have the most complex needs. We do that through consultation and also through trainings across the state of Vermont. Rachel, I would love to have you introduce yourself and tell us how you came to find yourself on both sides of the bed. Rachel Wright: I feel like I need to use lots of letters. You’re like C D C I E, but I don’t have any letters. Pam Cummings: We have lots of acronyms. Rachel Wright: I don’t, I don’t have as many letters as you. I could, I could maybe make some up. Yeah. My, I have a BSC in nursing. There you go. I’ve got one. I went to KCL, which is Kings College London, and did my nursing degree. So yes, I’m Rachel. I am a qualified nurse and I’m very cliche. I met my current husband, current like I’m gonna get another one. I don’t intend to get another one. And my, my one and only hopefully husband <laugh> I’ve known since I was a kid and we got together when we were teenagers. And just to, just to finish off the cliche, he’s a doctor. Pam Cummings: Of course. <laugh> Rachel Wright: Of course. Pam Cummings: <laugh> Rachel Wright: So Tim and I got together when we were in our late teens and I did apply for medical school, but I wasn’t clever enough. Pam Cummings: Oh, that’s not true. Rachel Wright: It’s true, well, no, okay I might not have been. I didn’t, I’d have to have retaken my a-levels several times to get the grades I required, so I didn’t get into medical school. I resisted being a nurse, but I was a sciencey girl, so I went off and did nursing. I did a degree in nursing at Kings College London and I kind of envisaged Tim and I going off and saving the world, you know, one person at a time, like who wouldn’t? I’m a good Christian girl brought up in a Christian household and I just figured I would be another missionary across some other plane. So take down the cliche, I mean, you know, I imagine myself as Florence Knightingale <laugh> but also a little bit Laura Croft. You know, I’d kind of like a utility belt, you know, so the lady with the lamp, but also got some attitude. Pam Cummings: I love it. Rachel Wright: That’s what I was going for. Yeah. Completely. Pam Cummings: That kind of worked out actually. <laugh> Rachel Wright: I mean, I think I’m a perfect hybrid really. <laugh> Pam Cummings: <laugh> Rachel Wright: <laugh> So Tim, we actually got married before Tim finished medical school. And then we did a bit of traveling and went to Uganda and did some work there and did some out clinics in the outskirts and, and places in Rwanda. And then we did some work in New Zealand, and then we might have had a little bit of a jolly on the way home and gone to Australia and Thailand and various places. And that was great and then we got back and we decided to be grownups. So we got back and bought a house and got a mortgage. We didn’t really buy a house, let’s be honest. The bank owns the house for a very long time <laugh>. And we decided to start a family. So got pregnant and it wasn’t until my eldest son was born 16 years ago now, that suddenly having spent being on one side of the bed, I’d worked in A&E, I had worked in elderly care, I had worked in ITU, and when I was doing traveling I worked in ICU and I worked in theaters and all sorts of places that I went from one side of the bed where I was breaking the news and telling people what was happening and seeing people’s lives change dramatically in what we call A&E and you guys ER, that suddenly people were breaking news to me because despite having a normal pregnancy, I mean, is any pregnancy normal? Pam Cummings: <laugh> I mean, your pregnancy, which is how it always is. Rachel Wright: A normal pregnancy. Is it normal to wake up and go out and then vomit in a curb on the way to the supermarket? I mean, it was normal in that sense. It was normal in that there weren’t any problems. But I don’t know, I still think your body growing at the rate of grass <laugh> Pam Cummings: <laugh> Rachel Wright: is weird. And you know, like, yeah, it was all just very strange. But Pam Cummings: I had random nosebleeds with one of my pregnancies. Rachel Wright: Oh, did you? Lovely. Pam Cummings: Just sudden and I was doing direct care and so I’d be like, ‘Yeah, I’ll be back in, you know, 10, 15, this would take a long– Rachel Wright: Sorry if I’ve just bled on your carpet <laugh> Pam Cummings: Don’t mind the blood, it’s fine, we’re good. Can I use your bathroom for maybe 15 minutes? Then I’ll be back and then I’ll go home, then I’ll leave but anyway. Rachel Wright: <laugh> Lovely. Pam Cummings: Normal, normal. Rachel Wright: Yeah, I didn’t, no nosebleeds, but lots of, lots of puking. I couldn’t do the bread aisle. Pam Cummings: Oh yeah. Rachel Wright: There was something about bread. I couldn’t cope with the smell of bread. So I’d like, walk into a shop and then I’d just be like, ‘Oh, nope’ Pam Cummings: <laugh> Nope. Rachel Wright: Can’t do it. I’m good, I’ll come back. I’ll come back. Oh, anyway, I don’t miss being pregnant. But it was all quite normal, then the boy turned up having the night before I couldn’t feel him move. And I woke up in the middle of the night stressed that I couldn’t feel my baby move, but I’d felt a move the day before and Tim and I decided to go to the hospital the next morning if we still couldn’t feel him move, cause Tim had reminded me of times that I’d complained him kicking, you know, the baby was kicking my bump and stuff. Tim tuned off to work on the morning of my due date and I called up the midwives and said, ‘So I can’t feel the baby move’ and they’re like, ‘Well, it’s probably all fine, but why don’t you come in and we’ll get you checked out, but have some breakfast first.’ Like, nothing to worry about, there there. I turned up and they strapped a monitor on me and I heard a heartbeat. So, you know, first big deep breath. Tim rushed up from the ward and heard the heartbeat and a second big, deep breath. But the baby still wasn’t moving. I was given this little red button, you know, a little bit, sort of Austin Powers like if I press this, it’s gonna eject me from my hospital bed. Pam Cummings: <laugh> Rachel Wright: But I never had reason to press this red button because the red button was, your baby is moving and you can feel a kick. But I didn’t ever feel the baby move and I had a scan, an ultrasound scan, and they said all the blood sort of, you know, looks like it’s all moving around absolutely fine. We can’t see what the problem is, but given we still can’t see your baby move, let’s get that baby out. So we went across to the labor ward, they said it’ll be too long being a first-time mother to try an induction. So sunroof it was and we had a cesarean Pam Cummings: Sunroof, is that what you called it? Rachel Wright: Yeah, that’s, well, you know there are two ways for a baby to come out. And this was  [Together]: The sunroof. Pam Cummings: <laugh> Sorry, is the other the trunk? What is the other? Rachel Wright: <laugh> I haven’t gone that far to decide what the other version, like the exhaust? Maybe? I mean, you know, I’m not sure Pam Cummings: Okay, not quite the exhaust. Rachel Wright: Maybe that analogy stays with the sunroof. <laugh> Pam Cummings: The sunroof, just the sunroof. Okay, got it. <laugh> Rachel Wright: It’s just the sunroof. <laugh> Pam Cummings: <laugh> Rachel Wright: Yeah. Anyway. Pam Cummings: Okay, I like that. Rachel Wright: I guess it’s a door. It’s just the other way is a door. Just the way it’s supposed to be coming in and out. Pam Cummings: Yeah, okay. The door, that works. Cause you wouldn’t be in the trunk. Okay, go on, sorry. Rachel Wright: Yeah, we could get very tied up in that. So anyway, cesarean section was the way forward. And the doctor was like, ‘I’m 90% sure your baby’s gonna be absolutely fine, but we need to get on with this.’ And we’re like, ‘Okay, yep, no problem.’ Into a clinical gown. And then they tell you to like bend over. Like, you’re nine months pregnant and you have to like crunch so that your spine sticks out. Pam Cummings: Yeah. Rachel Wright: For the spinal block. Like, what is that even? It’s like, I’ve not been able to see my toes for four months and you want me to stick my spine out? And then you see the size of the needle and you’re like, ‘Oh, ok. I’m doing it. I’m doing it. There you go.’ Pam Cummings: I can totally do it. Rachel Wright: Is it alright? Can you see? Please tell me you can see my spine. Cause those needles are massive. Pam Cummings: Yes. Rachel Wright: Absolutely huge. Anyway, legs fizzing and tingling land on the bed, the thing gets erected between me and the lower part of my body. Tim stays head end, being a doctor and having done some time in surgery and stuff, he is absolutely fine cutting people open, but not his wife it seems. Pam Cummings: He didn’t want to have to see that. Rachel Wright: Suddenly, it was less okay. <laugh> So he stayed up by my head and the baby was born and they said, ‘It’s a boy and we’re like, ‘Yay.’ And then the baby was taken off and I couldn’t hear him cry. And that was genuinely the first time, I think that really was the first time I thought, like, I thought stuff was going wrong before that, but in a kind of other person way, does that make sense? Like it was, you know, I’m great at imagining bad things happening <laugh> I’m really good at that. I have that down to a T. I can imagine all the potential negative things that could occur. And it was only when I didn’t hear the crying that that reality landed in me and in the situation. And Tim went backwards and forwards and told me that, you know, the theater was suddenly way more quiet. Everyone was very busy, but the chatter and the hum and the kind of busyness was suddenly, I mean, I felt a change in tension very significantly. And Tim said ‘He’s not breathing. He’s being resuscitated.’ Pam Cummings: Oh. Rachel Wright: And then it all changes. I got to see the top of his head before he was whisked off to neonatal intensive care. And Tim got out of his blues and went to try and see him and I’m obviously being sewn up by a poor doctor who’s actually beside herself because it was her first kind of not-great outcome. And I remember sitting in recovery and dozing off and being how on earth, like waking up with that– Pam Cummings: How could I be sleeping? Rachel Wright: How could I go to sleep? How can I be in this situation that I don’t know if my son is alive or not and I’m managing to doze off? But I was obviously up to my eyeballs with medication. And actually, in the preceding 16 years, it is very useful to be able to sleep anywhere and everywhere because there have been numerous hospital beds and floors and all sorts of places that I have been required to sleep whilst he’s needing to be looked after. So he got whisked off. We do have a faith so our minister turned up and there was lots of praying and texts went out. It was pre-Facebook, you know, the good old days when you had to text people. And then we were given, sort of the next day or two, we were given the chance that he wouldn’t survive, the chance that he would be absolutely fine, and then this big gray bit in the middle. And we very firmly landed in the gray bit. We didn’t know that though until for another 10 weeks. So he was in hospital for about 12 days. Amazingly came out without being on, not on any medication, not, like no assisted feeding. He was being breastfed. When I had my second child, I realized I was a bit rubbish at breastfeeding, but I didn’t realize that because I’d never breastfed anybody before that time. Pam Cummings: Yeah, you were doing it. Rachel Wright: And it was, it seemed to be working. I’d used a pump, I mean that’s a whole other thing. Talk about like being Daisy, the cow, like in hospital while your baby’s in SCBU. Pam Cummings: Yes, and pumping. Rachel Wright: And you attach this pump to you, oh my days. Pam Cummings: Yes. Rachel Wright: Weird. Pam Cummings: Breastfeeding is wonderful. Pumping, not wonderful. Not, yeah. Rachel Wright: And, go on. Pam Cummings: Was he breastfeeding directly or was he drinking from his mouth? Rachel Wright: Drinking breast milk. So when he was first born, he had an NG and they give him fluids. And then he had my expressed milk. He only ever had expressed milk when he was in hospital and he was breastfeeding by the time he left. Pam Cummings: Wow. I mean, that’s a really good sign, right? He’s managing the sucks well. Rachel Wright: Absolutely, yeah. But we left with this optimism that we were taking our miracle baby home. Pam Cummings: You did it. Yes. Rachel Wright: Yay. And we came home with our arms full of gifts and balloons and baby and thrust into this whole 24-hour thing. You know, suddenly there’s two o’clock twice a day <laugh>, not just once a day. Pam Cummings: <laugh> Rachel Wright: Suddenly there’s three o’clock not just in the afternoon. And then there’s things coming out of all sorts of orifices. There’s sunroofs and boots and doors and exohrt, like oh. Pam Cummings: <laugh> And sometimes very forcefully, yes. Rachel Wright: Exactly. And you know, when you’re trying to like, not turn the light on too bright so the baby doesn’t completely wake up and then you’re like, ‘nah, I’m gonna have to turn the light on because I have no idea whatever that was, where it landed, what I need to clean up’ yeah. So that was the normal carnage that happens after a newborn baby. And it wasn’t until we were going for an MRI scan. He had an MRI scan booked for 10 weeks, his six-week check, which is routine, was alright. They were like, kind of like the pediatric consultant was like, kind of crossed his fingers and maybe he’s been lucky cause he looked like he was tracking and he looked like he might be smiling. And the MRI, I mean, I don’t want a bit of a spoiler alert, but the fact that we’re talking about this means the MRI didn’t quite work out as we’d hoped. And we left that appointment clinging to each other, having all of the things that I don’t think we even realized we’d anticipated. You know, it isn’t until something is in jeopardy or something is no longer something that can be assumed that you realize that was an expectation in your life, an expectation that was gonna happen. So first steps, first words, first school, like all this stuff suddenly kind of wafted <laugh> into somewhere else. Pam Cummings: Mm-hmm. <affirmative> Rachel Wright: Because we were no longer able to assume cause they said he had severe and complex brain damage. They kind of used words like all, all parts of his brain and the gray matter and the white matter and severe and all that kind of stuff. And in the middle of that appointment, I remember just thinking, how did I let this happen? Pam Cummings: Oh. Rachel Wright: How did I carry on doing all the things in my day when this – Pam Cummings: is happening. Rachel Wright: And this major moment that was gonna take us so off script on what we had predicted, you know, up until that point we were on point for the narrative. <laugh> Pam Cummings: Mm-hmm. <affirmative> Rachel Wright: And then suddenly the narrative to – Pam Cummings: So when going into the MRI appointment or the results appointment – Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: Did you, were you like, it’s fine, this is gonna validate that it’s fine? Or did you have a gut that maybe it’s not gonna be quite fine? Or just where was your head at? Rachel Wright: So the gut moment, the kind of stone in your stomach that says ‘Mmm,’ happened about 10 days, maybe two weeks before the appointment when it’d been after the six-week scan and I’d noticed a crease on Sam’s head. And the bone and his seam in his head and I measured, I got the measuring tape out and measured it and realized the nurse at his six-week check had in inaccurately measured his head circumference. Pam Cummings: Oh. Rachel Wright: So they had put his head circumference down as being on track. And when I measured it, it was not on track. He was born with a normal head circumference. And then by six weeks, well now this was eight weeks, it had tailed off and it was like down to 20, then zero kind of type centile. Pam Cummings: So you were like ‘hmm.’ Rachel Wright: So that was ‘hmm.’ So Tim and I had, and Tim’s a GP, so, you know, he was like, I don’t think this is very good, but maybe it’s okay? Kind of clinging to – Pam Cummings: And it seems okay, he’s doing all the things we would expect him to do. Rachel Wright: He’s yeah, I mean, again, with hindsight, he was floppy. Pam Cummings: <laugh> Rachel Wright: He didn’t, he didn’t hold the way my other babies did. But that early it wasn’t ever gonna be something that we’re really sure of Pam Cummings: Mm-hmm. <affirmative>. Rachel Wright: So by 10 weeks we went in for the MRI and I was, and we were both worried, and we kind of said to the consultant, the registrar that came and spoke to us to kind of clock us in for the MRI cause he was gonna have to have a sedative for the MRI. We were like, and they’re like, is everything fine? We’re like, ‘Yeah, he’s feeding, he’s putting on weight, Da da da. The only thing is maybe his head circumference.’ In the hope that she’d be like, ‘Oh, that’s ok. Don’t worry about that.’ And actually, she just did not do that at all. She went– Pam Cummings: Ohh. Rachel Wright: Ohh, exactly that. Pam Cummings: Yeah. Rachel Wright: ‘Oh, hmm. Okay. Thanks for that information. I’ll just scribble that down and put a big underline on it.’ Pam Cummings: Her brain is going off. Rachel Wright: Exactly. <laugh> I’ll just get my highlighter out. Pam Cummings: <laugh>. Rachel Wright: And put a big asterisk next to that thing. It’s like, ‘Oh.’ Yeah. So that was, and I remember, I remember so clearly sitting on the plastic red chairs outside the MRI scan feeling like these people were inside the scanning room. It’s like, it’s like sitting, I mean, I’ve never been, but I imagine it’s like someone reading your taro cards or somebody like getting this crystal ball out because they were in there with getting information that was gonna tell me what my future was. Pam Cummings: The rest of your life mm-hmm. <affirmative> Rachel Wright: That’s it. Pam Cummings: Mm-hmm. <affirmative> Rachel Wright: And I just felt I should have a more comfortable chair. Pam Cummings: <laugh>. Rachel Wright: <laugh>. You know Pam Cummings: This chair is not okay <laugh> Rachel Wright: This is gonna be one of the most significant moments in my life. I ought to have a better chair. And there shouldn’t be people trying to take out my toes with wheelchairs and trolleys zooming past, like. Pam Cummings: Give me space, a more comfortable chair and maybe strap me down a little bit. I might need to be strapped down for this part. Rachel Wright: I just feel like this moment should be more. But that’s not when we’re told the – Pam Cummings: That’s when you’re waiting. Rachel Wright: Radiogropher was but yeah she came out and she was like ‘so the doctor will bring you through and give you the results in a while. Go back up to the ward, feed your baby da da da.’ And I just shot Tim a glance and I said, ‘That’s not good.’ If it was some, if she had any, casue I know that if I was talking to somebody and I was able to give them, ‘this is gonna be okay,’ I would’ve given them a ‘It’s all right, the doctor will be seeing you, but it all looks good.’ Pam Cummings: You’re good. Rachel Wright: You know you’re good, exactly. But there was no ‘you’re good’ indication. So I think I knew at that and, and Tim was like, ‘Let’s just wait.’ And one of the things he had said to me, I don’t exactly know when, but he was like, ‘The baby we’re taking into this appointment is the same baby as we’re taking out.’ Pam Cummings: I was gonna ask you that. Did he seem different before and after? Because I know that that is something other families deal with. Like, they, even when they get diagnoses at older ages, they’ve had this child for three years and now they get a name for what it is. Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: And it’s the same baby. It’s the same kid. Right. But you, your perception is different now. Right? Rachel Wright: Definitely, it’s me that changes. Definitely, it’s me that changes whether, and I guess, I guess it’s not surprising. It’s like that sort of scales before your eyes that is that, that everything in the world looks different. And I, I write about it in my book ‘The Skies I’m Under’ I write about the difference between that journey there. So we’d, Tim and I both trained in London and the appointment was in London. We’d got the train. And so there was lots of familiarity about the stations and the stops and whatever else. But that journey home, everything looked different. It was, it was so similar. Do you know what I mean? There was something so normal and comforting about it being familiar because we knew it and we’d been there, but suddenly it all looked different. It all, you looked at steps differently, you looked at people’s expectations differently, you looked at you just looked at everything differently. And, and that, you know, we actually left the hospital and my closest friend at the time was having a baby that day. And so actually went and visited her. She’d had a cesarean that day. So we actually turned up to the hospital and they obviously knew that we had gone for this appointment. And so we were at the hospital saying, ‘Yeah, it’s not good news’ whilst being introduced to her. Pam Cummings: Her new baby. Rachel Wright: Yeah so that was a paradox and a half. And that was a few days before, that was a few days before Christmas. That was the 20th of December. Pam Cummings: Oh. Rachel Wright: So that changed that Christmas dramatically. But I guess the thing that happened there was we just, we went off script. We went in a completely different direction and I, the first thing that I did, I think at that point was I realized it was too hard to be disappointed by what didn’t then happen. And I had to come from a place of not expecting anything to happen. Pam Cummings: Oh, interesting. Rachel Wright: But not in a, so Tim’s, Tim’s granddad used to say, ‘expect the worst and plan for the best,’ or something like that. Do you know what I mean? Pam Cummings: <laugh> Rachel Wright: Hope for the best Pam Cummings: Plan for the worst Rachel Wright: Let’s make sure that, you know, we’re leaving room for good things to happen. Pam Cummings: Yes. Rachel Wright: But let’s be honest, it’s, not. Pam Cummings: We’ve got our bag packed. Yes, yes. Rachel Wright: <laugh>. Exactly. <laugh>. Pam Cummings: But everything could possibly go wrong. Rachel Wright: Yeah. And I think, I think I, to protect my own heart from the perpetual disappointment, I kind of had to strip back to this is where we are and how do we move from here? I don’t know that I did that very well, but that’s what I was aiming for. Pam Cummings: Mm-hmm. <affirmative> Rachel Wright: Because I couldn’t, I couldn’t be like, Oh, he’s, you know, I’m, I’m, I’m hoping that he’s gonna be able to step or walk or do this. Oh no, he’s not. Oh, I’m hoping that he can see and did it. Oh, he’s not. Oh, I’m hoping that he can. But actually, that’s, that, that is definitely what it felt like those first couple of years. I talk again in the book, I talk about this, just feeling like you’re in the ring and that, that every time you get yourself up within those first three or four years of diagnosis, it’s not just one thing. Pam Cummings: You’re back down. Rachel Wright: It’s always the next thing and another sucker punch and another thing that gets you on the canvas and it’s, there is a repeated you fall down a rabbit warren of disability diagnoses like this. It just feels endless. Pam Cummings: Mm-hmm. <affirmative> Rachel Wright: Those first– Pam Cummings: More diagnoses, Rachel Wright: Yeah. Pam Cummings: More piled on. Rachel Wright: Another, another person that you need to meet, another appointment that you need to do, another therapy you need to consider, another problem that could be on the horizon. Pam Cummings: And now there’s 10 people in the room, now there’s 15 people, now there’s 100 people. Right. I, I, I do get that. I, we’ve heard that from families. Sometimes the next diagnosis is just like another diagnosis. Rachel Wright: Yeah. Pam Cummings: It’s just too much. Like, we, we’ve got this, we can’t have that too. Even if it’s associated, whatever. Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: In my mind, it’s all those together. But note that one more thing. It just, I I do see that as a challenge. Rachel Wright: You cannot add another thing to my list, my son’s list of stuff at the stuff at the top of the letters. Pam Cummings: Yeah. Rachel Wright: Can we, can we peak at four? Pam Cummings: Mm-hmm. <affirmative>. Rachel Wright: And then can you like, appendix it? <laugh> Pam Cummings: <laugh> The four is it. Rachel Wright: I just don’t need any more added to that list. But it feels, and everybody gives you those diagnoses casue they think they’re helpful cause they’re trying to give you information and information is power. And it’s, it’s how we, you know, help, help, and support people. But it, it is, it is emotionally exhausting recalibrating yourself to this next thing. I, I remember saying to Tim, ‘I just wish they’d tell me everything.’ Like, I just want to know all of it here and now, just tell me it’ll be awful and then I’ll get up and we’ll get on with it. But with hindsight, maybe that wasn’t really such a great idea either. <laugh> Maybe I wouldn’t have got up. Pam Cummings: Yeah. Rachel Wright: If someone had, but I do remember some of those appointments where doctors told us the next thing, like you’re, you know, at one point a doctor says ‘hopefully they’ll stand, your son will stand, but he probably won’t walk functionally.’ That was way over that like, that he’s so far from that being a thing. But at the time, that felt like a loss. At the time that felt, ah, that’s something I had hoped. Pam Cummings: You didn’t really need to know that yet. Yeah Rachel Wright: Well, I did want to know that. I was actually really annoyed that when I spoke to the physio, my local physio about it she’s like, ‘Yeah, yeah, I thought that.’ I’m like, ‘oh why didn’t you tell me?’ Pam Cummings: Yes. Rachel Wright: I was actually really cross that somebody who I thought I was close to professionally that was working with, we were focused on helping my son, had information that I didn’t have. I didn’t like that. Pam Cummings: Mm-hmm. <affirmative> Rachel Wright: So I wanted to know. But it was, it’s, it’s, yeah, just always tricky balancing the information. Anyways, we’re at this appointment and I remember sitting in the waiting room and there being all these older children who were very obviously severely disabled and had really complex needs. And they were making noises and dribbling and had specialist chairs and neckerchiefs and suction things and all this stuff. And I just looked at this baby in front of me that was six months old. And yeah, he wouldn’t look me in the eyes and yeah, he wasn’t picking things up and putting them in his mouth, but he was just my baby and I could not, I genuinely could not see my life with him as a 13-year-old. Pam Cummings: Mm-hmm. <affirmative> Rachel Wright: I couldn’t picture it. I couldn’t. And maybe actually what I couldn’t imagine was not so much him because those children were in front of me and I’m a nurse and I know what those, you know, what children with really complex needs looks like, what I couldn’t imagine was myself. Pam Cummings: Mm-hmm. <affirmative> Rachel Wright:And I couldn’t imagine my life within that story Pam Cummings: Mm-hmm. <affirmative> Rachel Wright: Within his life. And I think that was what I couldn’t or I couldn’t really articulate and what the, the impact that had, was I stopped being able to dream or imagine a future. Pam Cummings: Mm-hmm. <affirmative> At all. Rachel Wright: At all. Pam Cummings: Yeah, yeah. Rachel Wright: Because I couldn’t think, Oh, when he’s five then we’ll be doing this or that. I just, I just stopped being able to see, like I said, him and therefore me. Pam Cummings: Mm-hmm. <affirmative> I met a family once and the child was young and not diagnosed yet, but they knew there was something, they hadn’t gotten the diagnosis and they, they really enjoyed the traditions of Halloween and Christmas. And the fa–, one of the parents said ‘well now those are ruined.’ Like, like the child has basically ruined these because the child’s not gonna be able to do the things we would’ve expected them to. You know, And it was really interesting the focus on that. But that was the visualization. Rachel Wright: Yeah. Pam Cummings: That what happens when you have a child, you imagine Christmas and what Christmas is like with this child. Rachel Wright: mm-hmm. <affirmative> Pam Cummings: Right? Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: So, yeah. It’s really interesting. Rachel Wright: And it’s, it, it does really boil down to, I think it boils down to what we think are the parts of life that we most treasure and enjoy. So I remember when my son was, had his barium swallow, and again, another corridor with another cheap rubbish seat with trolleys zooming past my feet, someone decides to tell me never to feed my son again. Pam Cummings: Mm-hmm. <affirmative>. Rachel Wright: And, and I, I realized that the thing that I came down to weeks after that, was my, the loss that I felt was much more about what I thought. Pam Cummings: What’s a typical meal look like in your house? What, what does dinner look like with your children? Rachel Wright: What does a beach day look like? They’re an ice cream. What does grandma coming to visit look like? A curly whirly. What does, as in a chocolate bar with toffee in the middle. What does Christmas look like? Christmas dinner. What does birthdays look like? Birthday cake. I’m not saying my whole world revolves around food. Pam Cummings: <laugh> Rachel Wright: But it does <laugh>, but it does. I taste and smell and savor the seasons and festivities and things through food <laugh>. So the idea of him not experiencing that stuff, my heartbreak and loss over that was so much more tied up with my perception of what was important in life rather than what he actually enjoyed or savored or appreciated. Because he actually found eating quite stressful, unsurprisingly, because it was going into his lungs. You know what I mean? It wasn’t, it wasn’t funnily enough. Pam Cummings: Yeah. Rachel Wright: It wasn’t like he, he didn’t, he didn’t see food coming because of the vision impairment, he, he would eat or whatever, but it wasn’t, it didn’t give him the same joy that a tub of ice cream gives me. Pam Cummings: <laugh>. He didn’t have the associations with it. Right. Rachel Wright: Exactly. So, so when, and so I guess that’s the same for the parent that you’re talking about, the things that are, are our markers in life. And I think, do you know what, I think this is one of the things that why parents like me get so obsessed with things like talking and walking. Pam Cummings: All parents, but go on. <laugh> Rachel Wright: Because, well, but, but it’s parents like me in that when you know your child’s gonna walk and talk, then that’s just a thing, isn’t it? There’s no, there’s no baggage along with that. But as soon as your child has complex needs or has a disability, then are they gonna need a wheelchair? Like that, it seems like a marker, doesn’t it? It feels like a thing. Are they gonna, are they gonna talk? Pam Cummings: Mm-hmm. <affirmative> Rachel Wright: And I guess we could say, well that’s, that’s understandable because they’re, they’re our means of getting around and our means of communicating. But I feel like you’re not saying to people, you know, is my son gonna be able to get around? That’s not the question, is it? Is my son gonna be able to express his needs and his desires? That’s not the question. It’s something to do with words and it’s something to do with steps. Pam Cummings: Mm-hmm. <affirmative> Rachel Wright: And again, I think that’s to do with the baggage that we bring along that is the magic of those first words. The magic of those first steps. Pam Cummings: Those first steps. It’s in every Hallmark commercial, right? Rachel Wright: It is. Pam Cummings: Yeah. I’ve never had a parent say, ‘I want my child to be, to have mobility and communication.’ Rachel Wright: Exactly. Pam Cummings: They say walking and talking. Rachel Wright: Yeah. Pam Cummings: That is what parents want. And then mobility and communication, the fact that it’s possible. Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: Can we give them ways to access those things? That becomes very exciting when it’s understood that those are, there are other ways to be able to be mobile and to communicate, but walking and talking still is the thing, right? Rachel Wright: So I think the, the walking and talking thing, the transition from, from one side of the bed for me to the other was I guess there was another transition after that. So there was landing in the place of, of my son having a disability, and then there’s landing in the place of which I’m still working on, I’m not gonna say I’ve got both feet on the ground on this one. Landing in the place where, exactly what you said, it isn’t necessarily about the walking and the talking, it’s about breaking down even more what the essence of life and enjoyment is. And it isn’t, ooh, that was my phone. Or was that your phone? Pam Cummings: Nope, that’s you. Rachel Wright: Okay. Sorry. Oh, if I, if I knew where it was, then I would stop it from doing back. I don’t see it. Oh, there is, here we go, let’s put on silent. Breaking down the essence of life in a way that it isn’t about the steps and the words, it’s about the moving and the communicating. But there is, I definitely think there is a process for us parents where we have to work through that. Pam Cummings: To get there. Rachel Wright: Emotionally, yeah. I just, I don’t think anyone can rush that. Pam Cummings: Mm-hmm. <affirmative> Rachel Wright: We all do it in different ways and different things. There’ll be certain things that are more meaningful or more difficult because of our own, the, the parts of our life that are important to us. That we fear our sons and daughters are not suddenly able to do. Pam Cummings: I think that the other part of it is joy, right? Like, finding joy in life. And what I think brings me joy. Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: And it, it might not even be what, you know, any of my children, right? Any of them are thinking. Rachel Wright: <laugh> No. Pam Cummings: Right, who knows? Rachel Wright: That’s a parenting fail that we all do, isn’t it? Pam Cummings: We just assume that. Rachel Wright: Yeah, exactly. You’ll be really happy if you get really good grades and get a, this kind of job that I think is really good. Even though they’re like, No, I’ll be really happy if you let me go in the Xbox for an extra three hours. Pam Cummings: <laugh> Rachel Wright: That’s where my joy is. Are you sure? Pam Cummings: Broadway, I love broadway. Rachel Wright: Are you sure you don’t want? Pam Cummings: I’m gonna bring you to broadway all along your childhood. Rachel Wright: And you will love it. Pam Cummings: You’ll love it. You will love it. And then, huh, funny, maybe not so much, right? But anyway, but joy, I mean, communication and mobility is very important, obviously, but, but joy, right? Rachel Wright: Mm-hmm. <affirmative>. Pam Cummings: There’s a lot of negative experiences that have to happen when you have medical diagnoses and to make sure that there’s pleasurable things that happen too, positive experiences and honing in with your child on what that is. Rachel Wright: Yeah. Pam Cummings: So that you can help be part of it, provide it, be part of it, whatever. Yeah. Rachel Wright: And you keep, and you keep coming back to ensuring that those, those other things are part and parcel of all of your world. I think that’s something that both practitioners and parents can get lost into, like I say, you fall down this rabbit warren of diagnoses and therapies and everything else, and it’s so easy to get sucked into that world and miss the joy. Pam Cummings: Mm-hmm. <affirmative> Rachel Wright: Miss the simple, powerful, authentic, meaningful aspects of life that, that are just drowned out with the noise of medical jargon for one. Do you know what I mean? And, and schedules essentially. Pam Cummings: This is an aside, but have you seen the video including Samuel? Rachel Wright: No. Pam Cummings: Do you know what that is? Rachel Wright: No. Pam Cummings: I’ll send you a link. Rachel Wright: Okay. Pam Cummings: I’ll, I’ll, I’ll show you, I’ll share some information with you later about that. Rachel Wright: Okay. Pam Cummings: I think you would really like it. It’s about inclusion for this filmmaker is his, it’s his son, but, and so he decides to make a documentary film about how to, the navigating, how to have him be included in school. But what the, what reminded me of it is his brother, the, the relationship between the brothers. Rachel Wright: Hmm. Pam Cummings: And there’s a lot of joy there. And the brother is the one who knows how to get the joy from him. Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: And the two of them have such a great relationship. But I’ll share it with you. He’s a great, Dan Habib, he’s a great, cool documentary filmmaker. He’s done some cool things. Okay. You know, one thing that you said, which makes me, I know that a lot of the work that you do is about bringing parents and providers together to work together. Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: And we’re about to have, host a training with you doing just that. But when you talked about the physio who said, ‘Oh, I knew that’ was holding information or not even holding it, but had, didn’t feel like it was maybe the right time to bring it up. Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: Or wasn’t the person who could bring it up. But tell me more about that. Like how could that have gone better for you? Rachel Wright: I think it’s really tricky because I reckon that I could probably have a similar story where she told me that information and I was peeved off with that. <laugh> Pam Cummings: Definitely. Rachel Wright: I don’t, I don’t know that there is a fail-safe way of treading this minefield of complexity of emotions and outcomes and reality that we weren’t expecting and we hadn’t planned for and were not equipped for. Pam Cummings: Mm-hmm. <affirmative> Rachel Wright: So I think. Pam Cummings: Too early, too late, right? Rachel Wright: Well, well, I think the, the, the thing that I come back to within my training again and again from both sides, it being about context and intent. Pam Cummings: Hmm. Rachel Wright: So if you have developed a trusting relationship with somebody, if you’re seeing them day in and day out, if you are in that place and you don’t share something that is very meaningful and significant, then you can’t be surprised when that is detrimental to that, that relationship. Pam Cummings: Mm-hmm. <affirmative>. Rachel Wright: I think, I think that people who see me once or twice, those, those consultants, nanny, those people in the locums in like kind of the, the doctors who see us once in a, in a, an appointment and not gonna see them again, are more likely to go, ‘Yep, well that’s that and that’s gonna, you know, that’s gonna be terrible for you. Never mind, here you go. There’s a prescription, off you.’ Pam Cummings: Trainer, yup. Rachel Wright: Lovely. And are quite happy, quite happy might not be the word, but I’m more likely to give the bad, perceived bad news. The people who we see week in and week out, who we build up relationships with, who we know that we’re gonna be in our lives for years to come, are more hesitant to have those hard conversations. And I understand why because they’re hard conversations, and you don’t want to ruin relationships. But actually that vulnerability, that clash of humanity rather than schedules and appointments and roles and tasks is where things get real. And it is so much nicer for somebody that you have trusted to sit with you and say, ‘you know, from the stuff that I’ve read and from previous people, this is what I’m thinking. And I’m, maybe I’m wrong. I’m not, I’m not, I’m not casting your child into being the same as everybody else. But I just want you to know that this is what I’m thinking and we’re working on this, and this because this is what we’re hoping for and this is what we’re working towards. And I wanna be pointing to the positive, but I, I don’t feel right knowing this without you also knowing this. Because if I have–’ That is my alarm telling me to do my son’s meds. Pam Cummings: Oh. Rachel Wright: So I’ll turn that off cause somebody else is gonna do that. So I think, I think the come, the issue comes back to sharing where we’re really at. And if, if I guess it feels like if that person is withholding information and not really being real and true, then you start questioning how much of what I think is a, is a professional relationship actually real and true? Like, do you really like me, or are you just, are you just putting on this role because you’re my son’s physiotherapist? Like, how much of that– Pam Cummings: If you withhold other stuff then maybe you’re withholding that too Rachel Wright: Exactly. Is this just all a game or a job? And that’s tricky when as a parent you are so vulnerable and so dependent on other people. So I think actually the people who I would love to be able to have more of those difficult conversations are those people who are in people’s lives for longer. Pam Cummings: Mm-hmm. <affirmative> And you’ve developed those– Rachel Wright: And developed those– Pam Cummings: Mm-hmm. <affirmative> Rachel Wright: And knowing that you can weather the storm cause it will be like, it’s gonna be hard. Like that doesn’t make it a nicer, the news is still the news. Pam Cummings: Mm-hmm. <affirmative> Rachel Wright: It’s still not gonna necessarily land somewhere that’s uncomfortable, but you are suddenly in that place with somebody who isn’t shooing you out the door after 15 minutes, but is gonna come back next week and be like, ‘How are you after that conversation? That was really tricky.’ Pam Cummings: Mm-hmm. <affirmative> How do you, do you have more questions now that you’ve thought about it for a week? Yeah, I think when I was doing more direct care. Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: Direct care in people’s homes doing the direct physical therapy, I, I thought about that a lot. I knew that I came with all sorts of information. Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: And as I got to know a family and a child, I was, I knew stuff. I, I had some very educated guesses about what the future, you know, what things, how things might roll out. Rachel Wright: Mm-hmm. <affirmative> Mm-hmm. <affirmative> Pam Cummings: And, and I always wanted to make sure I came at it from a strong relationship. Rachel Wright: Hmm. Pam Cummings: So it was definitely harder if I didn’t have a strong relationship. Rachel Wright: Yeah. Pam Cummings: Cause then who am I, who am I in this, in this family’s life to come and give them some bad and bad news or whatever. Rachel Wright: Mm-hmm. <affirmative> Mm-hmm. <affirmative> Pam Cummings: And I also felt really strongly, and this is something I tried to teach other providers and other, like when I had students and things like, I’m the physio, right? If I’m not gonna talk about this, who is? Rachel Wright: <laugh> Pam Cummings: Like, there’s not someone else who’s in the house who knows this information about these stairs up to the bedroom, right? Like, we need to start talking and it’s expensive to change the bedroom. So I have to start now. I can’t worry, I mean, I can worry, but I can’t not bring it up. Rachel Wright: Yeah. Pam Cummings: Because I think the family can’t handle it or can’t is gonna kick me out or. Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: What I don’t, you know, like they, or you know, that this is gonna take years for them to change the way this house is and they don’t even know that they have to do it right now. How can they even start planning if they don’t even know? Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: Right. So I felt a lot like it’s my, this is my job. I think this is why the 24-hour postural care speaks to me so much. Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: Like I have to tell people about this. Rachel Wright: Yeah. Pam Cummings: They don’t know, I barely knew a couple years ago, right? Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: Like I, I’m in a role that allows me to have these conversations. Rachel Wright: Yeah. Pam Cummings: They’re not easy, but if we can’t not like who, you can’t not ever, you know, and like you said, if you wait too long, oh well. Rachel Wright: Why didn’t you, why didn’t you tell me two years ago? Pam Cummings: Two years ago. Rachel Wright: Like, why did, I’ve just redecorated that staircase? Pam Cummings: I just redorcated and you said nothing about the stairs? Rachel Wright: I’ve just put a new wardrobe in that bedroom upstairs that’s not gonna fit downstairs. Pam Cummings: I mean, it’s just. Rachel Wright: Yeah. Pam Cummings: I do think that’s interesting. But again, I think you’re right. It takes relationship building and trust to be able to be someone who can say that. The other thing that I think about with this, one thing that I, in my career that came about, which I didn’t have when I first started, was the gross motor classification system. Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: And I can, that is, I know you know what it is, but it’s a way to classify gross motor abilities in children primarily with cerebral palsy. Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: And scale from one to five. But, and there is some predictive value to it. Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: That there has been longitudinal studies that if you are at one level when you’re about two, then you are likely gonna stay at that level. Things will change for you, you’ll grow and change. But the description of those levels stays. I wish I had that when I was a new therapist. I mean the, that, that is a concrete black and white way to say I’ve got some evidence and here’s what I know about this diagnosis. That, that helped me a lot. Rachel Wright: Hmm. Pam Cummings: It just felt like it gave me a little more, it’s not just me saying, I’ve seen a lot of kids like this and here’s what I think, right? Rachel Wright: <laugh> Pam Cummings: Here’s what I think’s gonna happen, right? Rachel Wright: But it’s bigger than that. Yeah. I think that’s true. And I think, I think there is something about when you are talking about hard things, I talk about this in the training and stuff. When you talk about hard things, it is easier when you start talking about bones and muscles and bodies. And not about Jimmy or you know, Penelope or whatever. Like when you’re not talking, when we can take out some of the emotional baggage that comes in and say, so when, when a somebody’s trunk is really hypotonic, you know, is really floppy and sloppy, you know, then they’re gonna need support in this way. And that support is something that they need not just when they’re in their chair, but then when they’re in their bed or when they’re, you know, the whole way through the day and night. In the same way that gravity, funnily enough, doesn’t take a hiatus between the hours of 10 o’clock at night and nine o’clock in the morning. Neither does my, your child’s patterns or whatever else. So and that’s, I’ve done a couple of animations talking about, you know, things because I think that it’s just, it’s also, it’s YouTube and you can watch it and then you can, you know, come across with questions or whatever. But it just takes a little bit of the, the emotions of it so that then, then the connection you have with the  practitioner can be with when you’re talking about your child. It can be about the specifics rather than this general whatever. Let’s get the, let’s have this general stuff evidenced and, you know, talked about in more maybe more black and white concrete type terms. Although let’s be honest, nothing’s a given no matter. Like medicine is still, you know, half made it right. Pam Cummings: Right. Rachel Wright: <laugh> We don’t actually know. but let’s, let’s keep the, or let’s keep the connection authentic and let’s keep the relationship intact. And I think it’s, but I think it is possible to, to think about our language and our communication in a way that we can have a difficult relationship and still have the opportunity to say hard things if we, I mean we have to, can only do our best. Some people are still unreasonable actually. Pam Cummings: <laugh> Rachel Wright: Just because, just because I have a child with a disability and just because you’re a clinical therapist does not mean that we’ve both had a personality transplant. Pam Cummings: <laugh> We might not get along. Rachel Wright: And suddenly, and suddenly we’re gonna get on beautifully. And we are both, you know, I, you know, like a saint obviously, and you are obviously, you know, your flo. The Florence Nightingale, the angelic kind of– Pam Cummings: Coming in to fix it all. Rachel Wright: Exactly. You’re gonna wasp in there. Wasp? I don’t know what that is, it’s like a whisk and a something else. I don’t know what you were doing. Pam Cummings: Whisking. Rachel Wright: But yeah, you’re gonna whisking you’re gonna swoop in and make it all fantastic really. But no, we’re still just people. Pam Cummings: That’s like pinning your feet because you’re a saint, right? Rachel Wright: Absolutely. Pam Cummings: While I fix everything, yeah. Rachel Wright: Yeah. You’ll fix it all and I’ll just diligently, quietly martyr my own life for the sake of my children. Pam Cummings: <laugh> Rachel Wright: Cause that’s what mothers do. Pam Cummings: That is what mothers do. All right. We are gonna run out of time. I can’t believe it. And I would love, you have given some good advice about practitioner, providers and families working together. I love that idea of working from starting with like bones more generally and or specific to bones and muscles and this is what we know about this diagnosis. Rachel Wright: Mm-hmm. <affirmative> Pam Cummings: And then how does that impact, you know, when we’re talking about Jimmy, what does that mean? What other advice do you have for practitioners and families to work together better? Rachel Wright: Okay, so whistle-stop cause we have just rambled on endlessly. So whistle-stop to providers, I think I would try to come back to you are a very small part of a very big picture. There is a lot of life going on that you don’t see. There is a lot of emotion going on that you will not bear witness to, but don’t ever assume that the one thing you’ve asked them to do is the most important thing you’ve asked them to do. Pam Cummings: <laugh> Rachel Wright: <laugh> So there is always more going on than you can think and that you can see. And I guess back to sort of Maya Angelou and, and what she says around how you make someone feel lasts longer than the words that you say. The details of your conversations will get lost with time. But the way in which you communicate with people and how they are left feeling that they’ve been heard, that they have connected with you, that you’re on their side, that you’re cheering them on, that you’re passionate about their child. Those, the essence of those things will supersede any of the other jargon that you end up throwing in their way. Pam Cummings: Mm-hmm. <affirmative> Rachel Wright: And I think if we can step past our professionalism into that humanity, that’s where great things happen. When we are two people who are being human and real. That’s when we get beyond our skills and that’s where the magic happens, where we can actually create something that is profound and, and really changes people’s lives from both sides. Pam Cummings: Mm-hmm. <affirmative> Rachel Wright: Of the, of the sort of relationship. From a family point of view. Okay, this is the advice I continue to give myself. <laugh> Pam Cummings: <laugh> Rachel Wright: Please don’t think I cannot, I am just as lost as the next parent. I’m just as, trying hard as the next parent. These are not things I have sussed, but I would say step into your own story, not the one you expected. It’s important to grieve and recognize and put framing around what you thought life was gonna look like and actually what it is because it’s only when we step into our own story that we can really move on. That’s Brene Brown. I don’t pretend that I– Pam Cummings: <laugh> Rachel Wright: I don’t pretend that I made that up at all. Pam Cummings: No, you could have though. Rachel Wright: I could, I could have wined that one. I could have pretended. No. Find your people, whether that’s in person, online I’m very diligent and careful about making sure that I have people within and beyond the disability world. That’s really important for me. Ask for help. Pam Cummings: <laugh> It’s a tough one for a lot of people. Yes. Rachel Wright: It is, but that comes from some weird fallacy that actual, when you talked about joy earlier, we have this weird gauge that joy comes from independence. We have this weird, and maybe that’s where the steps and the words come from too. We have this weird idea that joy and, and power and success comes from doing things on your own and without any help from anybody else. And it is. Pam Cummings: <laugh> Rachel Wright: Nonsense. See what I did there? Pam Cummings: <laugh> Good job. <laugh> Rachel Wright: Nonsense. <laugh> Pam Cummings: Nonsense. Rachel Wright: Nonsense. Because this is our one and only precious life and I, it’s my children’s one and only precious life and it’s my one and only precious life. So I am gonna ask for help because I think that makes their life better. I think it makes my life better. And I also want all of my children, not just my child with really complex needs, I’ve got two other boys as well. I want them to see that when they’re grownups, they deserve a life that is full of fun and joy and work and you know, play and all those other things. And so I, if I want that for them, I need to mirror that in my own life. Pam Cummings: I love that. Rachel Wright: And martyring myself for my children is not something I want them to do. Pam Cummings: Never want them to do. Rachel Wright: Not something I’m, not something I’m gonna model. Pam Cummings: Mm-hmm. <affirmative> Rachel Wright: I want them to think being a grownup isn’t hallmarked by martyrdom, but rather generosity for each other and for myself. So, ask for help. Pam Cummings: I love this so much.     Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.