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Starfire Cincinnati podcast on what more is possible in inclusion, community building, and relationships.
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Investment - Expectations - Return ... a writing from Michele LaCourt
Curiosity Friday is a series by Starfire that connects curious minds! Check out the insightful Curiosity Writing by Family Mentor Michele LaCourt! Originally crafted for September 2024, it’s too valuable to miss. .Read & .Enjoy
ICEBREAKER, a story blog by Michelle
“He got to just be himself, enjoying his bin of shakers, stomping around with his squeaky shoes, and making a few hand motions to his well-loved songs.” Our family moved in the summer of 2023. Moving is hard for any family – hence why many studies list it as the number one most stressful life event. It is even harder when you have a child with special needs. Beyond the stress of packing, living in limbo, and then unpacking, we had to find new specialists, therapists, etc., and a new community. We tried to connect in various ways, but found it hard to plug-in. We found Starfire shortly after moving, and we decided to host an event in May 2024 after we settled into our new home and had time to meet some people. Our little guy with a disability loves music, and so we decided to make it all about music!After months of living in our new city, we were feeling starved for relationship after many failed attempts to connect. But we decided to keep on with our musical event. We passed out many invitations, both to acquaintances and near-strangers. We received a few RSVPs, and of those that did RSVP “yes”, one family backed out due to illness. That left us with three committed families. To some, that count may seem like a failure. But, it was those three families that made the event amazing, and, because of the event size, it allowed for more authentic connection. Everyone had an absolute blast, we connected with the parent attendees, and there was not one mention of our son’s Down syndrome diagnosis. He got to just be himself, enjoying his bin of shakers, stomping around with his squeaky shoes, and making a few hand motions to his well-loved songs.Shortly after our event, we were invited by one of our attendees to a summer kick-off party. We were elated! “Our son just got to be a little toddler who loved music, and our musical event broke the ice that we could just not otherwise crack.”Our Family Project was our icebreaker. We didn’t feel like we stuck out like a green thumb, our son just got to be a little toddler who loved music, and our musical event broke the ice that we could just not otherwise crack. We are still in contact with those three families, and we hope those relationships continue to blossom. Permalink
In Conversation with Mike and Alyson
From Starfire, this is a podcast on what's more possible in inclusion, community building and relationships.
Different with Purpose | With Carol Combs and Achsah Fitzhugh
From Starfire, this is a podcast on what's more possible in inclusion, community, building and relationships.
Different with Purpose | Interview with Pamela Whiteley and Kyle Miller
From Starfire, this is a podcast on what's more possible in inclusion, community, building and relationships.
Different with Purpose .. Interview with Allison Lourash, PhD on Asset Based Community Development
From Starfire, this is a podcast on what's more possible in inclusion, community, building and relationships.
Join us for Curiosity Friday with Sara Vank
Learning abut Curiosity Friday 2023!
Community Building | With Mitch Haralson, MSW, LCSW, Starfire Executive Director
From Starfire, this is a podcast on what's more possible in Community Building | With Mitch Haralson, community, building and relationships.
Showing support
I’m a big fan of Kim Hauck. She’s the director of the Ohio Department of Developmental Disabilities, and she and her team make a difference in our world, every single day.I opened my Cincinnati Enquirer on Monday and was elated to read Kim’s editorial, How you can show support for people with disabilities.There’s a PDF of the Enquirer article below (no link available for the Cincy version, sadly BUT there is a link to a version published in the Columbus Dispatch.) <figure class=" sqs-block-image-figure intrinsic " > I love this piece for two reasons:The mind/word shifts she describes are spot on! Plain language, remembering that people with disabilities are people first, supporting businesses for which equity and inclusion are just part of their DNA. All good.The clincher, for me at least, is this sentence: Making our state more inclusive and accessible starts with me and you. No truer words ever typed/spoken :)A couple of weeks ago, Starfire visited two cemeteries to commemorate Disability Day of Mourning. Attendees were asked how they felt about the visit, and Katie Robinson from Central Ohio, shared: Biggest difficulty of being a multiply-disabled person is not about access, like getting on a bus ... it's society's views on disability that stems from the mindset of this institutionalization or the medical model of disability that perpetuates that there's something wrong with me that needs to be fixed." Take a minute to listen to the podcast series, Unnamed & Unknown, share this story, infuse inclusivity into your day/week/month/year/DNA, and if you can, support our work to build a more inclusive world alongside people with developmental disabilities, one relationship at a time.
Unnamed and Unknown | Part 4
From Starfire, this is a podcast on what's more possible in inclusion, community, building and relationships.
Unnamed & Unknown | Part 3
From Starfire, this is a podcast on what's more possible in inclusion, community, building and relationships.
Unnamed & Unknown | In Our Backyard: Understanding DDM Part 2
From Starfire, this is a podcast on what's more possible in inclusion, community, building and relationships.
Unnamed & Unknown | Understanding Disability Day of Mourning (DDM) Part 1
From Starfire, this is a podcast on what's more possible in inclusion, community, building and relationships.
Finding The Joy | Carol Combs
From Starfire, this is a podcast on what's more possible in inclusion, community, building and relationships.
Making room for new to grow
By Carol Combs, Starfire Family Leadership Network CoordinatorAbout 12 years ago when my oldest was knee high to a grasshopper, we would walk out our front door and she would look across the street at the remnants of what used to be a bustling parking lot for the Hamilton Die-Cast Company. She would proudly say “look it’s Hamilton’s Rocky Top Mountain Park”. To her young eyes she seen the potential in what it could be, while us adults just seen it as a weedy overgrown dumping ground and a place where nothing good happened. During that time, the neighborhood we lived in was not known for anything good, it was the place you were told not to go after dark and you always locked your doors before turning onto East Ave, the main artery of the neighborhood. If you spoke to the residences of the neighborhood, they would tell you that “the city forgot about us here in this part of town,” and signs of that to be true showed in the road conditions, the abandoned spaces, and the constant flow of “bad” stories that came from the neighborhood. Little did I know that in the years to come, our family would help bring that space to life and begin shedding light on the gifts and goodness that lived within the neighborhood. <figure class=" sqs-block-image-figure intrinsic " > Fast forward to 2017, the neighborhood is still home to our family and we had grown by one; there is another knee-high to a grasshopper seeing the potential of that barren and abandoned space once known to her sister as “Hamilton’s Rocky Top Mountain Park”. My mentor once shared this story from “Walk Out, Walk On” (https://walkoutwalkon.net) about a small group of citizens who gathered in a space that was very much like the space we seen when we walked out our front door, a weedy overgrown dumping ground and a place where nothing good happened. In the story, each week a small group of citizens would gather, hold hands and commit to cleaning up “just the space where their hands made a circle”, as weeks went on more citizens joined and in the end the space was transformed into a beautiful, shared space where the community could come together, celebrate, and get to know one another. Having stepped into a new space where we as a family were beginning to look at life a little differently, explore our community, and discover our place of belonging, I too began to see that old parking lot through the eyes of my children and seeking out who might join US in transforming the space. <figure class=" sqs-block-image-figure intrinsic " > My family and I have been on an incredible journey the last 5 years, we have learned a lot about ourselves, we have all built valued roles in our community- each of us Carol, Briella, Grayson, and Charlie- have become named and known in Hamilton for the gifts we shared to bring what felt impossible to life in our neighborhood. Over the course of 2 years, we activated our own social network and brought to life a space where people in a “forgotten neighborhood” could come together to celebrate and get to know one another. What once was a place where nothing good happened is now a place that is a source of good. The space is ALIVE! One of my favorite things to do during that time was to go outside on the porch and listen to the kids playing and the adults enjoying each other’s company; the sounds of little legs sliding down the plastic slide, the sound of the kick against a soccer ball and the comradery that comes with the game, the squeak of the swings, swinging in unison, and I wouldn’t be doing the moments like this justice if I did not include the smell of the neighbors cooking tamales outside-this was community…our community. <figure class=" sqs-block-image-figure intrinsic " > By me and the kids working alongside my mom and other members of our community, we had accomplished so much in a short amount of time. Joining The Jefferson Alliance brought new energy not just to the neighborhood but to all of us and in the process, we gained some amazing people in our life; Pastor Aaron, Kathy, Woody, Linda, Frank, Brandon, Brooke, Peggy, our 17Strong family (and that is just naming a few). As a family, we tasked ourselves with the responsibility of caring for the park. Each morning mom would get up and walk the park, picking up trash and making sure it was safe for the day’s flow of neighborhood kids (including my three). At least once a month-sometimes more- the kids and I along with mom and our Jefferson Alliance/17Strong family, would hold an event. We joined forces and got involved in the Art in the Park movement in our city, hosting a Saturday morning craft once a month, we held a movie night, organized a Día de Los Muertos celebration with our neighbors, we would play ball with the kids, and supported those who wanted to use the space for events however we could. It was great to see Pastor Aaron and his parishioners activating the space too. What once was a barren dumping ground was alive with grass, trees, accessible playground equipment, a mural, and people from the community.I had decided some time ago that Hamilton would always be home and I imagined that it would also always be in the Jefferson Neighborhood but just as the seasons of nature change, so does life. Two years ago I made the decision to move, we needed more space and the time was right. I had my eyes set on this house across from the park but the timing and the work needed was not in the stars and we landed in a brand-new neighborhood. Moving from the Jefferson neighborhood was a hard, I felt like I owed it to the people there to stay, I felt like if we left things would go back to what they use to be, I felt like those we had come to know and love in that neighborhood would feel like we betrayed our commitment to them and our community. I know now that is not the case, I still know and love the people we met. In our absence, the activation of the park continued. Pastor Aaron and his group show up and care for the park and the people of the neighborhood. New neighbors stepped up to keep it clean when mom could not and each time, I go to visit, the park looks even more alive than my visit before. The work we did as a family brought to life so much for us and our neighborhood. Our roots are deep here in Hamilton, our relationships within the community are even deeper, and new life grew because of our family’s discovery of the power of community, connection, and contribution. <figure class=" sqs-block-image-figure intrinsic " > Learn more about the Jefferson Neighborhood here: https://www.justhamilton.com/a-shared-passion/
Sharing Their Story | Tyner-Wilson Family Project
From Starfire, this is a podcast on what's more possible in inclusion, community, building and relationships.
The Four Commitments | Part 6: The Power of Intentionally Committing to Something New
This the final of a six-part series. Link to Part 1, Part 2 , Part 3, Part 4, and Part 5. Andrew Solomon, in searching for meaning in his own story, wrote a heck of a book, “Far From the Tree.” In it, he studied various ways that children differed significantly from their parents. His title cleverly plays on the old adage, “The apple doesn’t fall from the tree,” and Solomon’s work looks at what happens when it does. He studied lots of examples, including ones related to disability. There are more than a few good insights, and a few passages I would take issue with, but by and large, he offers that people had good lives if their parents found meaning in their child’s story. Parents who learned to integrate the difference of their child’s life from their own not only found ways to help their children live good lives, but also lived good lives themselves. Parents who resented the way their children showed up in the world experienced a lot of trouble, both for their children and for themselves. This is broad-brushing the book, of course, but it was one of the author’s primary insights after years of intense listening to the stories of countless people with disabilities and their families.And it rhymes with what we’ve learned at Starfire, which, in essence, comes down to people finding common cause with each other. When we started playing around with our new ideas, what emerged were these really cool community projects. They invited people into crossing over the barriers of their difference and working together to bring some new life to the world.They were making meaning together, despite, and oftentimes, because of, their differences. This had a bonding effect. They saw each other as more alike, beyond the superficialities of demographics. They were alike as human beings, sharing the spirit of creating a better world.That’s what we invited families into and wondered if they might learn a similar lesson: That their children are simply co-humans who they happen to be related to. And what can co-humans do together? Almost anything they imagine.We’ve had a front row seat for how people have answered that question in beautiful ways for over a decade. But it still feels countercultural, so it still needs serious intention and commitment if we’re going to get there.Making these commitments asked families to give up a lot. They had to think and act and relate in new ways. Asking them to give up the certainty of what the world told them about “disability” wasn’t easy, but when they did it, they found so many good surprises. Carol shared that “we are no longer ‘the family with a kid with a disability.’ We are ‘the family that does cool stuff.” And that new identity included her son in it. What a powerful shift for them all.One mother discovered a neighborhood book club that she’d never known about. Whether she was intentionally left out, or just so isolated, doing her project helped her grow her connections, and she ended up with a new set of connections with her neighbors.Another family found that their project inspired their neighbors to reciprocate, and their social calendar started to fill up with parties and invitations….even during the pandemic! All of this goodness, and so much more, came as a result of the families who committed to trying another way. That’s the power of intentional commitments.But it’s tricky making a commitment. It feels high stakes. One way we learned to lower the risk was to make the commitments small and temporary. The truth of the matter is that our commitments often are in conflict with each other. Each of us wants safety and security and stability in our life. Each of us also want growth, new experiences and some level of adventure. We call these “competing commitments,” and there is a power in naming them that way. We can hold them both together. We don’t have to relinquish one for another forever.We can decide to go for safety one day, and take a risk the next. Or we can lean toward stability in one aspect of our life, but take some risks in another.Our “Four Commitments” compete with legitimate and important other commitments, which is why we limited how we apply them. We only asked them to do it for this short time and only for the project they were working on.The reality is that families do need services. But services don’t bring community.And families can garner some support from disability-centered programming. But we know their child has many other aspects of their identity and giftedness to offer the world.The Four Commitments helped families focus on new social connections and new stories, while they still maintained the supports of more traditional services. They could step into new mindsets about their children, themselves and their neighbors while still navigating the culture around them that isn’t quite where we need it to be yet. Families had some space to explore something new by committing to it for a short time, in a limited fashion.That gave them creative freedom to design their own unique project, including their own unique network of people, discovering their own meaning in their own story in their own way.Starfire staff had been launching creative community projects for five years before we invited families to lead their own project. When our staff did it, we could meet on a regular basis and tell them how to do the work. They were employees, after all. That’s one form of power.But we didn’t have that kind of control over families, nor did we want it. So we developed the Four Commitments as a way to give the families some guardrails for their efforts, should they choose to adopt them. For every family that said “yes” to committing to a project, there were at least as many that said “no,” which was fine. Commitments are chosen, after all.In looking back, though, we came to see that the Four Commitments weren’t just for families. They had emerged through our staff’s early efforts and grew into our organizational culture. We had just never named them!We’ve since found them to be helpful in all our efforts to innovate around inclusion, carving out a space for new kinds of action and energy. Once that space is clear, it can be filled with the goodness of a family and community.Focus on gifts.Build something that is uniquely yours.Find the free connections that community offers.Look for joy.See where it goes.Photo by Priscilla Gyamfi on Unsplash
Sharing The What | with Starfire Family Mentors
In our third and final episode of our Family Mentors conversation series, we discuss the "what" behind "what" we do at Starfire.
The Four Commitments | Part 5: Fourth Commitment - Look for Joy
Photo by Bekka Mongeau: https://www.pexels.com/photo/white-printer-paper-22221/
The Four Commitments | Part 4: Third Commitment - Find the Free Connections that Community Offers
This the fourth of a six-part series. Link to Part 1, Part 2 and Part 3. Links to subsequent parts will be updated as they are released. If you gave me a million dollars, and I had to make a bet on whether the family of a person with a disability, or the person’s service workers, would still be around in 20 years, I’d put it all on the family.And I’d win easily.I could probably win even if I made the same bet on who would still be around in two years!It’s just the nature of the service system. Those of us working in it move in and out of jobs. During the summer of 2017, I started giving out project grants to 10 families. During the same summer, we hired four new employees to work as community connector staff. Within two years, all four of those connector staff had moved on to other jobs or different locales. They were replaced with another six people over the past few years, all of whom have also since moved on from our payroll. All 10 families were still in the lives of their child with a disability. And all 10 families are still connected to the people they met leading their projects and the values of community inclusion. We hope the staff are still connected to those values, and they likely carry them with them, but there is no way of really knowing. I gave out a total of $30,000 to those first 10 families, along with another $60,000 over the next few years for a total of $90,000 invested in over 30 families. We paid those staff over $600,000 over the same timeframe.That’s the reality. Our system of services seems stable, but only in the same way “Wal-Mart” or “Coca-Cola” seems stable. It’s a brand that we come to know. But behind the brand is an ever-changing, morphing team of people, coming and going. Good managers, bad managers. Hardworking committed employees and people just in it for the paycheck. That system of a steady brand works well for a product. There is one good way to make Coca-Cola. There is an easy, replicable system for running a successful Wal-Mart.But that model isn’t up to the challenge when the product is “support for a human being,” as it is in so many of our social services. And yet, according to a recent study by the Kaiser Family Foundation, we are betting over $116 billion on that model to provide home and community based services to people with disabilities and our community’s elders. And that doesn’t even count state, local and charitable funds! I’m not sure, but guess that including those funds could push the bet to over $200 billion annually.Imagine investing all that money and training and support in the longevity and love that a family offers.Don’t get me wrong. I believe in the power of good, well-paid, deeply trained support workers. In fact, I’ve had a front row seat to the powerful work my colleagues at Starfire (and elsewhere) have done over the years. Many of them had a deep commitment to the work and helped make beautiful things happen in peoples’ lives. Especially when there was no family present to step up.But as I write this, our field is experiencing what is being called a “workforce crisis.” There aren’t enough people to work the jobs needed to support people, and there isn’t enough money to keep up with rising wages to remain competitive with other industries. Some of this is a result of the pandemic. Some of it is a result of failed immigration policies, or other forces of economy.But those families weathered the pandemic. And there’s no need to rely on immigrants to replace parents and siblings. Just imagine what might be possible if we put those resources behind families.Families are just a better bet.I recently sat down with the mother of a woman with a disability. We have known each other for decades, and she and her husband have always fought for their daughter to live a life outside of the one offered to her by the service system. I admire them deeply, and have learned much from their example, so accepted her invitation to chat. When we sat down, she showed me the brochures of all the social services for people with disabilities she had been exploring.“Tim,” she said, “We’re getting up in years and I need to start exploring what’s out there for our daughter.”She told me about her other children and how they had offered to take in their sister if the time came when their parents couldn’t care for her. I wasn’t surprised as they were simply following the beautiful path their parents had laid out over nearly 40 years.“Are you taking them up on that offer?” I asked.She winced. “I can’t,” she said. “We can’t ask that of them.”We talked more about her deep belief that none of these services were good enough for her daughter, and that all the best things in her daughter’s life were a result of being included – in school, in work, in the surrounding neighborhood. We named all the people in their lives who were a regular part of her daughter’s life, and how much they meant to her. And then she said something that shocked me.“I guess I just feel badly. I thought over all these years, I would be able to come up with a plan for our daughter, to give to her siblings.”For 40 years, this mother had done everything she could to help their daughter live, work and play in the world as an ordinary, everyday person. She and her husband had built a regular life for and with their daughter, not a “special-needs life,” surrounded by therapists and counselors and caseworkers and staff people. It was a beautiful, connected and shared life that they had lived together.And she didn’t think she had a plan!“You did come up with a plan!” I said. “You came up with the best plan I could ever imagine. You planned a life for your daughter that included her in the world. And not only that, it’s stood the test of time for 40 years!”It had already outlasted any other plan any social worker, myself included, could have ever imagined. It had outlasted at least 125 of my colleagues at Starfire, and many hundreds of other staff at the other organizations her daughter was connected to.The only thing her plan couldn’t outlast was time itself.I admired that mother’s commitment. I began to wonder if other parents making a similar commitment, even in just a small way, was a good thing to help them work outside the status quo of our systems and societal notions about disability. Her daughter still attended Starfire programs, and still had various supports from the system, but through her commitment, she had carved out a life for their family that was completely and uniquely theirs. It was sacred and beautiful.It occurred to me that inviting her other children into the commitment and plan she had found so much meaning and satisfaction in might be a gift to them. Maybe it could offer them something beyond the task of managing a rotating cast of social workers, which would always need doing, but could never bring them meaning and satisfaction.“What if you handed that plan off to your other children?” I asked her. “Tell them about why you’ve carried it out, how you think about it compared to other plans, and how it’s worked out for you?”She wiped her eyes, and I wiped mine and she pledged to talk it over with her family.I’m putting my money on that family.So why don’t we bet on families in a bigger way?When I started giving out project budgets, and paid families a stipend for managing the project, I had all these doubts in my head: What if they run off with the money? What if they blow it all at the liquor store? What if they don’t do the project perfectly?Those fears stopped me in my tracks, and I almost never launched the program as a result. The only thing that brought me confidence and clarity was that I was certain that all those 100+ people on our payroll had surely blown at least some of our money at the liquor store over the years! And many of them stumbled and bumbled on their way to learning the work. So perfection, whether it be of moral expenditures or professional aptitude, was certainly not required.Families often seem to sell themselves short. I think some of that comes from people like me in the service system. I worry that sometimes we wield our “expertise,” our degrees, budgets and job titles, in a way that crowds out a family’s confidence in their own competence.One dad once told me he feared his son was “unknowable and unlovable.” He was working on developing a family project and was worried no one from his neighborhood could really connect with his family.I told him he had evidence that citizens could come to know his son and care about and for him. “What evidence?” he asked. “You,” I told him. “You know how to have meals with your son, how to go on vacations with him. How to spend time with him. How to worship with him and how to do chores with him. And you were once a person like your neighbors, who didn’t know all of that.”“But they don’t live with him,” he retorted. “True,” I said, “But all they need is time and touchpoints, like you, right? It’s just not as intense of a timeframe like you had. So we have to get started now so they can experience those things and grow in those ways.”That father, along with his family, has done at least four community projects that I know of, likely more. And his son has some solid connections growing with neighbors and friends as a result.Before the family projects, though, our staff did all of the work of a community project for families like his. And when our staff left, as they inevitably did, they largely took all the fruits of those projects with them.That’s the basis of the commitment to look for the free gifts of community, rather than hire a staff to do it for you.Families have found neighbors they can count on. And they get to keep those connections, for themselves and possibly for their children with disabilities. And even more importantly, by doing the projects themselves, they get to learn the lessons and strategies of being community builders. They discover gifts of people they never knew before. They get to learn how to depend on their community and be dependable for their community. They get to work as a team with other people to create something new and enjoy the pride of having done it.They get to live their lives in connection with others, rather than waiting on someone else to do it for them, which would never be possible anyway.One of the first times I ever met John O’Brien in 2011, I presented him with some questions that had been bothering me and I wanted his thoughts on.I offered him this “true or false” statement: “Families just want to be families, not warriors, so conversations with them about Social Role Valorization, Person-centered approaches, citizenship vs. clienthood, could be putting too much on them.”I waited for him to say “true,” or “false,” but unsurprisingly, he answered with a clarity that I wrote down, word for word, and have never forgotten:“If families delegate relationships for their children to the service system, they will always be disappointed.”I originally made sense of that statement by assuming that the service system would just do a much worse job than families expected. While that’s a reality, over the years, I’ve come to understand a deeper meaning in it.Families who I’ve walked alongside as they do a community project, relating and celebrating, planning and playing with their neighbors, are never disappointed.Sure by making the commitment to do it themselves, with their community, outside of services, they give up having others come up with ideas, make all the decisions and carry out the work. That’s awfully convenient and terribly tempting. A paid staff from the service system can shield a family from social rejection or disappointment. But the choices we offer as a system are always the ones that work for our us: within our budgets, during our work hours, and centered on our goals.By doing it with their community, families get to create options beyond our programs, and they get to work on their own terms, in the way that works best for them. It may not work as efficiently as hired help, but they get to own it. And as families have kept at it, they’ve been surprised when people they never expected show up in their lives.Even if the project goes sideways or changes, or even if they only get half the attendees they hoped for, they are always happy with their effort, and satisfied with what they learned on their journey, about themselves, about inclusion and their child, about their community.So we ask families to make the commitment to do it themselves instead of delegating it out to a service system.They end up getting to keep the treasures of their community and the fruits of their efforts all to themselves, and that makes them a stronger family. And that is always a good bet.
Sharing The How | with Starfire Family Mentors
In the second of three "Family Mentor" episodes, Starfire Family Mentors are joined by Starfire's Director, Development & Marketing Robbie Jennings Michels. Together, they have an impactful conversation about "how" they do all that they do.
The Four Commitments | Part 3: Create Something that Belongs to You & Your Neighborhood
This the 3rd part of a six-part series. Link to Part 1, and Part 2. Links to subsequent parts will be updated as they are released.As more and more families did projects, we got stronger around our “Four Commitments.” We all tried them on, almost like we would a new jacket. How did it feel? How did it fit? Did we prefer our old threads? <figure class=" sqs-block-image-figure intrinsic " > Families loved it, once they got going.The problem for some, as it is when trying new things, was in breaking out of old patterns. One family who said “yes” to doing a Starfire project was struggling. They kicked around dozens of ideas. What if we turned the empty storefront across the street into a space where neighbors could tell stories together? What if we hosted an event at the local high school theater? How about the basement of the apartment building down the street that hosts a neighborhood children’s summer camp? What could we do there?One day, as we huddled up for our monthly chat, they shared some exciting news. They had landed on an idea! They had talked to a bunch of neighbors, at my suggestion, and had heard a common refrain: There’s no block party in our neighborhood! “What do you think?” I asked them.“We like the idea,” the mother replied, “But we want something with more pizazz!”They spent a few days thinking on it, and eventually, wisely decided to follow the energy of their community.“Even though we aren’t all that passionate about a block party,” that mother said with a laugh, “We are passionate about being connected to our neighbors who are passionate about a block party!”So it was on.Over the coming months, they focused on planning the party. They recruited neighbors to design flyers. They sketched out the space and made lists of all they’d need to host it. Things were humming along. They and their neighbors were excited. And then we ran into an unexpected snag: “who to invite.”“Do we invite our friends who have children with disabilities?” they asked.It was tricky. This family was leading the way in many disability-centered organizations, so their network reflected that.I was their “project mentor.” And one of my responsibilities as a project mentor was to say things that I knew might be tough for them to hear. At the beginning of each project I helped mentor, I would tell each family “I’m on your side second.” They would usually look at me, wondering what that meant, and I would explain that my role in helping them carry out this project was to be on their child with a disability’s side first. That meant, I would explain, that sometimes their best interests and their child’s best interests were at odds, and I would do my best to advocate for their child’s interests.This was one of those times. I knew that in all my efforts to help people build projects, this was one of the toughest. Keeping it from becoming a “special needs” or “disability” event was critical. Otherwise, it would just be more of the same, reinforcing the outdated and harmful societal notion that “all those disabled people” belonged together.But intentionally not inviting people because they had a disability, or had a child with a disability, felt like we were violating the very core of inclusion.And people would call me out on it. Some called me “a discriminator.” Others went as far as to say it was bigotry. Those accusations always hurt, because I knew it was the furthest thing from the truth.I struggled with how to help this family understand what was at stake if they took the easy way out. I worried that I would offend them or hurt their feelings, or they’d think I was too radical and dismiss me.But I knew the cost their child will pay if I didn’t say it.So I took a deep breath and said, out loud, to that beautiful family “This might seem weird, but I have to say it,” and I told them the risks of including their “special needs network.”“If you all decide to open this up to your friends with children with disabilities who don’t live here, who pays the price?” I asked them.They sat there quietly, thinking it over.“It won’t be me,” I told them. “Or any of our Starfire staff. And it won’t be you. If a bunch of people with disabilities show up to your events, you’ll be just fine, for the most part.”“Our daughter will pay the price,” they said. “Yes,” I responded. “She will lose her chance to be known in this community on her own terms, and will, once again, be lumped in with ‘disability’.’”They nodded their head.“And,” I added, “The rest of us are asking her to pay that price just because it makes us uncomfortable to try another way.” “I got it,” said the mother, hopefully. “We’ll say that anyone who lives in our neighborhood is welcome to attend. That will at least help people know it’s only for people who live here.”“Great idea,” the father said. “But what do we tell our friends who don’t live here and have children with disabilities? I’ve already mentioned this to a few of them and they said they’re planning on coming to support us.”“My best idea,” I replied, “Is to tell them why you’re limiting it, and I think they’ll understand. Offer to help them do a project for their family. Tell them you’ll gladly not attend, but support them from behind the scenes, and ask they do the same for you.”“I know it sucks,” I added, “But all families deserve to have their own unique, personal stories. Including their family, too!”It was tough. Families with children with disabilities face a lot of social rejection. That does two things, over time. It orients them toward less painful options, like “special needs” events and programs. It also makes them sensitive to including everyone, an effort to give the gift they wish they were given. And here I was asking them to take the more difficult path of risking the social rejection of a non-disability event. Even worse, I was also asking them to ask other people who’d experienced the pain they’d experienced to not attend. We all felt horrible, but knew giving up the easier path was worth it to live up to our commitment to make this uniquely for their daughter.“Will you come to our event?” they asked me.“No,” I told them. “As much as I want to be there, soaking up the goodness, I don’t live in your neighborhood. My only connection to your family is through disability. Through Starfire. I don’t want to be the weird stranger taking the spotlight, or even worse, spotlighting your daughter’s disability as the purpose of the event when people ask me who I am and how I know you.”The next time we met, they had told me about their conversations uninviting their friends who had children with disabilities. One friend understood completely and hugged them and told them she understood. The other friend told them he was slightly offended. He insisted that he would still be joining with his daughter with a disability. The family, understandably, didn’t push back much.“But you know what’s even weirder?” the mom asked. “We are getting RSVP’s to our event from families with children with disabilities that we don’t even know!”It was then that we came to understand the power of the disability-social-media-algorithm. They had posted it to their social media accounts. Because they’d spent a lot of time sharing about disability and disability-based organizations, and were connected online to people like me, their posts got shared to other people who were in the same algorithm!They had worked hard to keep their crowd hyper-local. They personally handed out flyers, made a sign at the location of the Block Party, and sent texts to their neighbors. But now all of that was drowned out by what the social media algorithms thought was most significant about their family: disability.There was no stopping a group home employee from dropping off a van full of people with disabilities at their next event. What might happen if it gets shared to a regional disability email list as an inclusive event for families with children with disabilities? It was overwhelming to consider how fast the purpose of the event, to connect neighbors to each other, could get out of hand.It was an epiphany to me, and I pledged then and there to never share anything on social media about a family’s project. My network, after all, was also part of that disability algorithm.“We did have one awkward conversation,” the mother added. “We were attending an annual conference about my daughter’s disability, and the conference planners shared our project as a hopeful story for other families. Right after that, a family from Cleveland, who’s son has the same disability as our daughter, came up and told us they’d be coming to the block party!”“Oh no,” I whispered, and buried my head in my hand.“Don’t worry, though,” she laughed. “I had the perfect response. I said ‘Sorry, our party is only for our neighborhood. But if you want, we’ll help you plan a block party in your neighborhood!’”“How’d they take it?” I asked.“Not well,” she said. “But it was quick and we just went about our day. I think we’re starting to get our courage up around all of this.”After their block party, they came to see what I meant. People from the neighborhood met their daughter for the first time, getting to know her name and discovering that being around her was easy and doable. They loved it and started planning the next one immediately.The one hiccup came when their friends with a child with a disability followed through on their promise to attend the block party, even though they didn’t live in the neighborhood, and even though they had been asked not to join.Some neighbors assumed that the two young people with disabilities were best friends. Some of them asked if the block party was a fundraiser for disability organizations. At one point, the two young people were at a table, together, by themselves. The family noticed all this and reflected later on it.“It was a reminder of why we’re doing this,” the family reflected the next time we met. “We are just getting started building a new kind of network for our daughter. One that is just for her, and us, outside of disability.”I was so impressed with the strength of that family. They showed the power of families to lead the way in inclusion, by taking the hard steps of walking with their commitment to host a project that was unique to their daughter’s life.It was a helpful, and beautiful reminder of the level of intention it takes to try and create a new story, and build a new kind of future, for families like theirs.
The Four Commitments | Part 2: First Commitment - Discovering Your Community's Gifts
This the 2nd of a six-part series. Link to Part 1. Links to subsequent parts will be updated as they are released.Within two years of “saying yes” to doing a Family Project with Starfire, Carol had: Launched a monthly “Sew & Play” event in her community’s park where she and local kids learned sewing from a neighbor. They collaborated to make a community quilt!Joined the citywide association of neighborhood leaders who were working on ways to improve life for all people in her community.Organized a neighborhood Christmas caroling event, complete with hot chocolate and candy canes.Hosted a group of neighbors celebrating “Dio de Los Muertos.”Click to watch video of Carol’s Family ProjectAnd those were just the big splashy events! Behind the scenes, she was having coffee with neighbors, meeting new people she’d never talked to, and, more importantly, reinventing her and her family’s role in her community.I was blown away by it all.We were reflecting one day with some other families who had done a project with Starfire, and Carol shared one of her biggest outcomes:“We’re no longer the ‘family with the disabled child,’” she said. “We’re the ‘family that does cool stuff.’ People want to know us. They want to be around us.”All of us in that conversation had to agree. By taking some fun, interesting action in their neighborhoods, each family, including Carol’s, had transformed peoples’ perceptions of them as a family, and then, each individual member.But more importantly, it changed how they saw themselves and each other. That family became teammates, central in their neighborhood, connected to an expanding network of people who cared for and shared the same little corner of the world.For years, they had been told a troubling story about what “disability” was and wasn’t. Parents had been told that story even when they themselves were children, witnessing who was and wasn’t in their classrooms or on their sports teams or invited to hang out on Friday nights. Then when their child with a disability was born, that narrative was reinforced by all the therapies and services….And by the growing lack of ordinary, everyday people in their child’s life.They were in danger of having bought the story.But with these projects, they were seeing a way out of that as their only story.It’s not that we didn’t want to discuss disability as an aspect of someone’s identity, or even celebrate differences. But in our work at Starfire, we found that investing in the disability story was just….…well……boring.It was being done everywhere, all the time, by everyone else. And there just wasn’t much energy being put into other potential aspects of peoples’ identities. So we decided to put all our efforts on the side of helping people find their gifts, discover what new identities could emerge for them, and looking to meet up with other people who shared that in common.I once heard John O’Brien describe identity as a disco ball. We often think we are just a singular person with a single story, encompassed completely in who we consider ourselves to be. But in reality, he explained, we have many different aspects of our identity. We are different with our parents than we are with our siblings. We are different with our neighbors than we are with our lovers. We are different with our colleagues than we are with our best friends from high school. Each new connection offers a chance to grow a new part of our identity. So the surfaces of the “disco ball of our identity” reflect the people we meet and come to know. They grow and fade, both in quantity and quality, with each additional connection. We have so many unique stories within ourselves, just waiting to be discovered, lived and told.We aspired to more identities, and not just more, but more beyond the assumptions and limitations “disability” imposed upon our perceptions of ourselves and others.Making this commitment to look for strengths and gifts asked a lot of the families who worked on a Starfire project. Oftentimes, they themselves were so invested in the mindsets and culture of the disability identity around their child, they couldn’t even imagine anything else. One mother, Achsah Fitzhugh, came to understand how dominant her son’s disability was in their life after she hosted a series of events in her community. She began to see her new parts of her son’s identity emerging and expressed how powerful that was for them. “I can’t believe how long autism was in the driver’s seat of my son’s life,” she told a group of families. “He’s got so much more to offer the world, and that’s the big story now. Autism is still along for the ride, but we’ve put it in the trunk.”It was a vivid and powerful image for us.Sara Vank was another parent who started creating projects in her neighborhood with Starfire. In reflecting back on how much her community project meant to her and her family, she talked about her mindset before making a commitment to discovering the gifts of her daughter. “Before this project, I felt like my daughter was a diagnosis. Like I had given birth to a syndrome. But now I know she has her own identity as she is, and she is so much more than that label.”Sara then introduced a metaphor that continues to inspire us.“My daughter’s gifts act as a sort of ‘humanity anchor,’” she said. “They counteract the dehumanizing effect of the disability label. They help people find ways to connect with her, personally, human to human. And we all need more of that.” Click to watch Sara Vank’s story. That showed us the power of the label of disability to crowd out any other possibilities. And the transformational power of these new identities the families discovered as they worked, like Carol did, to find “more” beyond disability.They did have to give up the easy explanation, though. People initially thought their projects were about helping people with disabilities find each other. Many of the families had to respectfully decline offers to connect them with disability non-profits and support groups.There’s a comfort to old mindsets. The structure of the world has people with disabilities in familiar, albeit unhelpful, roles. “They” are the people “we” help through our charity events and fundraisers. “They” are peers of each other, but not of “us.”Breaking out of that takes courage. It’s risky and unfamiliar territory.That’s why the families had to make a commitment to do it.When families lived up to their commitment to focus on gifts, they reported feeling like they gained new identities, not only for their child, but for themselves and their entire family….And even for their community and neighborhood. People were more connected, less isolated, and over time, developed their connections into relationships that were important to them. I have a friend with a disability who wrote a helpful piece touching on the “privilege of reciprocity.” We, as nondisabled people, are expected to contribute our gifts: to others, to our family, to our community, to an employer. But collectively, we as a society are pretty inexperienced at making space for people who we perceive as having no gifts to offer.This has devastating consequences. I once listened as a Doctor of Behavioral Psychology offered that helping people with intellectual disabilities find and develop relationships was a waste of time because “they can’t give back to the relationship.” I offered dozens of ways people reciprocate in relationships that he had never considered, but it told me more about another deep and troubling mindset we must work to change. The problem isn’t with the gift, nor the giver. The problem is that potential receivers have been told a single story about disability, and that story rarely includes the value of peoples’ gifts. So we’ve got to show them a new story. That’s the power of the family projects and the openings they create. Uniquely tailored to each person and family and the people around them.A gift cannot be given unless it is also received, so we have to help create opportunities for receptions.
Sharing The Why | with Starfire Family Mentors
Starfire's Director, Development & Marketing Robbie Jennings Michels is joined by three other important members of the Starfire family. Together, they discuss the "why" behind all that they do.
The Four Commitments | Part 1: A Structure for Innovation
Catch Tim Vogt’s first of a six-part series on Starfire’s Four Commitments.
Who holds your story?
<figure class=" sqs-block-image-figure intrinsic " > “I hope, wherever you come from, there is someone who holds your story. Someone who remembers you when you were knee high to a grasshopper.” –David PitonyakBeing known is critical to our well-being, says author and one of the best diversity thinkers, David Pitonyak.Tim Vogt, Starfire Learning Network Coordinator, recently shared his thoughts on Pitonyak’s piece, “Who Holds Your Story” on Facebook, and it’s here for posterity! <figure class=" sqs-block-image-figure intrinsic " > Tim Vogt, Starfire Learning Network Coordinator “Over the past four years, I’ve met with dozens of families of people with disabilities. I have given each of those families this article. Usually, it’s the first thing I give them.It’s just so important. It’s funny, it’s poignant, and it asks powerful questions with important ideas. The icing on the cake is an attached bit of thinking from Jack Pealer and Sandy Landis, which I think inspired the article.I’ve been able to learn from David Pitonyak a few times, and am grateful for it. In particular, he first blew my mind with his “7 Questions” and framing “behaviors” as ways for communicating unmet needs. Such an important point of empathy that I was never taught.Overall, this article is about helping people explore, name and reclaim their story. Knowing a bit about the author, and Jack Pealer and Sandy Landis, I’m guessing its original intent was to help people with disabilities who were institutionalized and had their story lost.For me, it’s also a cautionary tale of what might happen if we allow institutional stories to creep in, and/or we neglect building strong personal stories of connection and community participation. That’s why I think parents of young children with disabilities might find this a critical read. They are the single most important predictor, in my opinion, of a person’s trajectory into an inclusive life story, or a segregated life story.Of course, it’s also critical that people in the field read it….And then think about ways they can catalyze better stories and avoid the institutional stories…And lastly, I always wish neighbors and friends of people with disabilities could read things like this. They might see themselves in the role of “Maria,” building lifelong memories and friendships…Or in the role of the sisters or the town policeman: helping craft connected stories with people with disabilities and their families is such an important action any of us can take in our daily lives.So, take a moment to read the “Who Holds Your Story” PDF below, and check out the author’s pages. All, I promise, are worth some clicks.”ResourcesWho Holds Your Story: http://dimagine.com/wp-content/uploads/2018/03/WhoHoldsYourStory.pdfwww.dimagine.comhttp://dimagine.com/seven-questions/
Dream Big
Charity and her daughter, Erin, who participate in the Starfire Family Leadership Network, started with small steps. And big dreams.
Q. What happens when you build community? Everything.
In its simplest form, building community is a field of practice toward brining people with shared interests together. In its most joyful form, building community is Missy Schwartz.
Caregivers need care, too.
<figure class=" sqs-block-image-figure intrinsic " > A recent WSJ story, “How Caregivers Can Take Care Of Themselves” caught my eye over the holiday break. The piece, by Clare Ansberry, was so thorough and well-written, and the timing was impeccable as one by one, family and friends were calling to cancel plans because of COVID, Omicron or “omicroflu” as my sister joked. Cue the continued isolation.As the whole world grapples with round 2 of coronavirus, the article offers some great suggestions for caregivers looking to shore up their physical, mental, and financial health this year. And it’s a great time to get involved safely with sessions Starfire will host this month - the Community Story Hour and the Community Design Session - that can help caregivers, families and individuals with developmental disabilities build community in 2022!Let’s start with self-care. Dr. Grubbissich, quoted in Ansberry’s piece, says it best: “Caregiving is a very noble thing. But you need to be well to care for someone else.” Maintaining a healthy lifestyle and positive outlook are two keys to “being well.” When our time or roles are seen as valued, we feel pride and confidence, which is why Starfire compensates individuals and families for the time they spend creating projects that add to their neighborhood’s culture, establish identities, and build communities. And these Starfire Commitments of Community Building serve to guide our community-building work: 4 Commitments of Community BuildingDiscover your community’s giftsCreate something that belongs to you and your neighborhoodGrow connectionsLook for joyBeing well is not a one-time Uber XL. It’s a daily journey. Make yours joyful with a few of these self-care tips for 2022: Physical Health If you’ve been putting off a routine check-up or a checking of aches and pains, schedule a physical (it may take awhile, so get it scheduled now.)Take breaks. Even a 10-minute time-out can help you reset. And rest.Financial HealthUse the new year as an opportunity to review or create a budget. Start by looking at last year’s expenses to estimate what you’ll need in ‘22Many states offer tax-free stipends for caregivers who are relatives. Often overlooked, these funds can help extend your budget.Emotional Health Update or create a phone tree of family and friends for easy access and sharing.Identify activities that you like - be it a walk or a movie or a chat with a neighbor - that you can do to help release pent-up emotions in a healthy wayBuild community - we published several ideas from our mentor, John O’Brien, from “Actions That Build Community” piece in December, like greeting a neighbor, donating blood or picking up litter in your neighborhood - plus 72 more great ideas that are evergreen! You are also welcome to attend Starfire’s Community Design Session and Community Story Hour. We host these sessions monthly and they’re a great way to re-energize and connect. Starfire Community Design Session - Thurs., Jan 13, 3-4 PMhttps://us02web.zoom.us/j/87144355103Families, people with disabilities and citizens coming together to help design and grow good lives — and good communities! Starfire Community Design sessions nurture family leaders via asset-based, community and relationship-building approaches of the Ohio Family Network. Each session features conversation on creative ways to build inclusion, access resources, and overcome obstacles via moderated sessions with two parts:-Collective Learning - small group design breakout sessions for attendees to discuss community projects and/or their journey; the design group addresses challenges / obstacles, and ideas for breakthroughs, etc.-Commitment/Affirmation/Action - participants share their takeaways from the session and next steps.Community Story Hour - Mon., Jan 24 Noon-1 PMhttps://us02web.zoom.us/j/85758644614Give us an hour, and you'll get inspiring stories of families and citizens around our world who are thinking of creative ways to meet neighbors, build community, and end isolation for people with disabilities. January's storyteller is Lori Jennings who will share how she & her family became "named & known" in their neighborhood by hosting a pumpkin party that flowered and grew roots, both literally & figuratively!
What's at Stake? | with Denny Burger
This show is all about building connections and building community, but what's at stake if we don't? On this episode, you'll hear from Denny and his story about Don, an irascible old coot as he likes to affectionately call him, and how he helped Don get back to his community roots after being institutionalized for 30 years. This is such an important story to remember how far we have come. But also what's at stake if we don't do this work.
Is it ever... too late? | with Nancy Fuller
Full transcript can be found at www.starfirecincy.org/podcast
Finding Your People - Part 2 (2020) | with Anne and Ric
Zoom Call Crafts Club is one of the innovations that Anne and Ric brought to 2020. In this episode, you’ll learn about the ways Ric and Anne have designed community around the barriers a pandemic and social distancing bring. Highlights: Hear about how they’ve kept in touch with friends virtually Reflect on the current events related to racial injustice and police brutalityAnne reads her poetry Learn about a project they’re working on for greeting cards to isolated people Listen to PART ONE to hear how they began their work together and made connections initially, pre-pandemic. GET THE PODCAST <a href="https://podcasts.apple.com/us/podcast/more/id1461268467" class=" image-slide-anchor content-fill " > <a href="https://open.spotify.com/show/7AiZiLQ67ySDzIYAtq0CGo" class=" image-slide-anchor content-fill " > <a href="https://www.stitcher.com/podcast/starfirecincy/more-3" class=" image-slide-anchor content-fill " > <figure class=" sqs-block-image-figure intrinsic " > “Um, well, my poetry is very inspirational and very creative. I’ve been writing lots of poetry about what’s been going on in the pandemic right now.” —Anne Katie B: Anne and Ric are cohosts of this next episode. This is part two, if you’d like to go back to listen to the first part recorded one year ago you can go back and do that. This is documentation of life during a pandemic. What does it look like to build community, design community, and connect with other artists in your neighborhood when there are social distancing rules and everything is virtual? So you’ll notice how some things change and some things stay the same. Anne also reads her poetry in this episode, so there’s lots packed in here. I hope you get a lot out of hearing from these two. They have so much wisdom to share around building community and making connections.(1:01 – 4:40)Ric: OK so we are rolling now, today is Tuesday August 18th 2020, my name is Ric James and I’m a community connector with StarfireAnne: I’m Anne Elizabeth Gearhardt I’m almost 23 tomorrow. I am a poety and I’m also an artistRic: Indeed you are. Happy birthday to you! We are on Anne’s back porch right now, nice covered screened in pation and if you listen closely you might hear rain falling Anne: And thunderRic: In spite of the rain it’s a beautiful day, and thank you Anne for sitting down for this interview today.Anne: You’re welcome!Ric: So we have been working one on one in the Starfire community connecting program for a couple years now. And as many people know if you’re listening to this we are in the middle of a global pandemic, which is kind of a big deal! It’s an interesting time to be alive, it’s also a scary time because we have a lot of anxiety and uncertainty about the future, but we have already discussed this, Anne, you and I, about how the pandemic is affecting things around the world. But the Starfire mission - to help create a more inclusive future – our mission isn’t changing, but our methods are changing. So today we just wanted to talk to you about what we’ve been doing to help you maintain your connections and friendships and help kind of deepen and strengthen the relationships in your community, and tell us about some of the people we’ve met together, some of the friends you’ve made, and how you’ve stayed connected during the pandemic.Anne: Well I haven’t talked to my friends in a while because of what happened with the pandemic. They have businesses still shut down, I’ve been connecting with Maria and Trace from Luckman’s coffee shopRic: Yes Maria and Trace have been great friends to us as we’ve set up our unofficial headquarters, which we haven’t been able to go to since the pandemic, but our regular visits there definitely started to form a bond and a real friendship with those two. Maria recently joined your zoom call crafts club, correct?Anne: That’s correct!Ric: Let’s not get too far ahead, tell me about the zoom call crafts club (4:40 – 11:55)Anne: Well the Zoom Crafts Club is when you can get together and make your own personal art, all together, but you can do it online by zoom. And you can make other things on your own.Ric: Yeah, this has been a really interesting experience for us to explore together because before the pandemic, one of our things to do together was about once a month at your local branch of the library they had try it out Tuesday. A librarian there named John would host a crafts event and with a small group of people we would create something there. And once the pandemic shut things down a lot of their locations and their various programs they offer, you and I were looking for a way to continue making arts and crafts projects with the people that you met in the community, specifically Sherry Clink, who we met at the library. She has been a regular member and contributor to your zoom call crafts club. Tell us about Sherry.Anne: She’s very fun, and very creative, and a great friend to have. Yeah, she’s a wonderful woman.Ric: She really is, I found that when you and I came up with this idea together after we did a zoom call, we said well what if we did a zoom call where you bring whatever art supplies you want, so while we’re on the zoom call you can be drawing or sketching or painting. In your case Anne because you’re an artist and a poet you were also writing poetry, reading some of your poetry during the zoom call, and we were able to draft Sherry into that call right away. And to her credit she is a great creative thinker because she was enjoying our zoom call craft club right away, but she also had a suggestion for us to join in with this art class we did together where we did a vision board workshop, do you remember that? Anne: YeahRic: What did you think about that? Anne: I think it was really fun! I already made my vision board, and it was really fun just to get extra creativeRic: Exactly, I thought that was an interesting experience because if you’ll recall that was 2 weeks a row we were on a zoom call with a large group – 35 or 40 people. Most of them were just the audience and then there was the instructor. The first week she told us about a vision board and then the next week we got to talk about what we were working on with our vision board, and that was all Sherry’s idea. She brought that suggestion to the zoom call crafts club. So she’s not just a contributor in the zoom call crafts club, which I sometimes call the ZCC, wait its 3 Z’s, ZCCC, so we’ve done a couple of these virtual events together with Sherry and I think that’s done a great deal to help you and Sherry deepen and strengthen a friendship we started at the library late last year before this pandemic. So who is the newest member of the ZCCC?Anne: Um that would be MariaRic: Correct, our favorite barista at Luckman Coffee on Beechmont. And in all fairness to Trace, maybe we should say Maria and Trace are tied for first. They have been so good to us for so long, you can tell every time we walk in there they really care about you. Didn’t you go there once with your mom so they could meet?Anne: Yeah, we did.Ric: Yeah, so our most recent crafts club meeting we were joined by Maria, and so now our group is up to four members and we have extended the invitation also to Trace at Luckman, so hopefully he will be able to join us soon and then I won’t be the only dude in the club anymore. But moving forward with the zoom call crafts club, what do you see there? What would you like to do as a group with Sherry and Maria?Anne: Well I’ve been making lots of fun, creative bookmarks lately.Ric: Bookmarks?Anne: Yes.Anne: And also poetry, and I want to combine them all together so I can talk about what has been going on with this pandemic and what’s happened to George Floyd.I don’t mean to get to overwhelmed about this story about George Floyd, but Derek Chauvin, he’s the one who killed him.Ric: The officer?Anne: The officer, yeah.Anne: When Derek Chauvin did that to George Floyd I actually felt bad about what happened and I was scared the whole time and it made me feel angry about it and that’s how other people have been feeling about what happened, and yeahRic: I agree with you and I’m glad you feel free to speak your mind, as you should. You’re in your own home and you are entitled to your feelings, and during this interview you should speak freely as you see fit. And I agree with you, with George Floyd, murdered in cold blood, I know that most police officers are good, but there is a problem in this country and that is an extreme incident that has a lot of us taking a closer look at the racial inequalities in this country, you know systematic racism. And so you have a voice and you should be heard, and I think this is something, this is a theme I hear recurring every day, and that is basically you have a voice and you should own it and be proud of it and speak your mind. Tell us, if you don’t mind, just a little bit about your poetry, what it means to you, maybe what you’ve been working on lately. (11:55 – 14:20) Anne: Well my poetry is very inspirational and very creative, I’ve been writing a lot about the pandemic, what’s going on in the world right now. Ric: Do you have any recent poems or something you’ve written that you’d like to share?Anne: I do actually, I have one poem. Just for now.Ric: Would you like to read it?Anne: Yeah of course! Before I read it, this poem is for everybody who is listening to this recording right now. This poem is very very inspirational it’s for all of you guys. Okay, Poem of the Day:You are beautiful just like you. That is you are just like in life.am your voice, I am a woman, has a Heart just like you, if I was you, always right on your voice. So that poem is all about who you are in lifeRic: You know it’s interesting to me because there is this theme of self empowerment that runs through your poetry and it’s very strong, very positive recurring theme in your poetry and I’m really impressed by that and it flows very naturally from you, that’s why I thought it was interesting that our new friend Sherry suggested the vision board workshop for the three of us because I think even though you met her not too long ago she already saw that this was something that might resonate with you. Because that was a similar kind of self empowerment exercise and self visualization, to actually put down in pictures and words your thoughts that you wanted to manifest in your future and so I thought that was interesting that Sherry could already see even though you’re friendship is pretty new that this was something that would resonate with you and I feel like you both really enjoyed that. (14:20 – 20:04)Ric: There was one other thing that I wanted to mention because the zoom call crafts club that we started with Sherry and our newest member Maria was part of a conversation recently where the four of us were talking about bringing our energies together to create something for the community, and I thought it was interesting that basically you and Sherry came up with this idea that you could contribute poetry and the three of us, now four of us, with Maria joining and hopefully the group will include Trace, also very soon, who is a great artist, he used to draw with us now and then at the coffee shop. We are talking about as a group creating some sort of greeting cards or post cards that we would design together and then incorporate your poetry and to send these cards to local people who are feeling isolated right now because of the pandemic. We could send them to say senior citizens in retirement communitiesAnne: We can also make some for my Kroger where I workRic: MmhmmAnne: Because I think my Kroger always needs something to brighten their dayRic: RightAnne: Whether they’re working at KrogerRic: That’s also a great idea that they would be something you could share with your coworkers. Once again Sherry Clink showed her great imagination and great creativity and just her intuition. She has already found a local group who does organize cards of encouragement and things like that for the local senior centers and retirement communities and things like that. So she’s already kind of taken that idea and ran with it and reported back with it. So with Sherry’s help we already have an organization we can work with, and we’re really at the beginning of this, we aren’t really sure how it’s going to go and where it’s going to take us, but I think it’s a great idea because you have written some great poetry and now we’ve started this zoom call crafts club to create art together and stay in touch with friends, to deepen and strengthen those friendships and now to create something together to give back to our community that are feeling isolated because of the pandemic. It’s very – I feel like it’s very uplifting and it’s very positive and I’m glad to be a part of this experience with you because we’ve found a way to take these sad circumstances but create something positive for people in the community with your art and poetry, it’s pretty amazing.Anne: Thanks!Ric: So I want to hear some more from you, though, just any more thoughts you’d like to share today.Anne: Um I think I have everything for now Ric: Did you have any more poetry that you’d like to read for our listeners while we’re recording? I don’t want to pressure you do read anything if you don’t feel prepared. Just thought I’d make that offer if you wanted to.Anne: I think I have a perfect poetry to read. Ric: Go ahead whenever you’re ready.Anne:I have theRight to have a styleI need a Voice is my headI am confident It has a lyrics PoetryIs peacefulVeryPoetry says SomethingAboutLyricsAs a poem in lifeI can changeThe very I am beautifulEvery poetryHas feelingsEvery storyAbout my confidenceAny poetryHad lyrics it has music in my heart Ric: Very good, thanks for sharing thatAnne: Thank youRic: And thanks everyone for listening, anything else to add?Anne: Well just one quick short poemRic: You wanna read one more, I’d love that.Anne: Every night as you feel on your voice in my head and right now God is telling you thank you so much for being here in life, thank you God for being here and we all love you, God is rest in peace in your heart.Ric: That’s fantastic, I didn’t want to talk over the thunder, but listen to it it’s still rumblingAnne: That thunder is GodRic: That’s spectacular. Yes it is, He must have known we would be recording today.
Finding Your People - Part 1 (2019) | with Anne and Ric
The next two episodes of More are going to be a little different. You might be listening to this podcast because you’re a fan of Starfire’s work, or maybe you’re curious about how to build community in your own life. So in honor of that, the next two episodes are going to be hosted by Anne and Ric (Richard). These two have been designing community in Anne’s neighborhood for a while now. You’ll learn how they began their process of designing community together. First, by learning about each other, over many conversations about art. Ric shares how he learned about Anne’s creativity and her love of poetry. Then, you’ll hear how they explored places in the city in order to find connections with people who share this interest.Listen to PART TWO to hear about how they held onto these connections in 2020 pandemic mode. GET THE PODCAST <a href="https://podcasts.apple.com/us/podcast/more/id1461268467" class=" image-slide-anchor content-fill " > <a href="https://www.stitcher.com/podcast/starfirecincy/more-3" class=" image-slide-anchor content-fill " > <a href="https://open.spotify.com/show/7AiZiLQ67ySDzIYAtq0CGo" class=" image-slide-anchor content-fill " > <figure class=" sqs-block-image-figure intrinsic " > FULL TRANSCRIPTAnne: To me meeting new people is like inspiration to me because meeting new people is inspiration to me because I like talking to people and being with people. Katie B: You might be listening to this podcast because you are a fan of Starfire’s work or maybe you’re curious about how to build community in your own life. So in honor of that the next two episodes are going to be hosted by Anne and Ric. These two have been working together to build community in Anne’s neighborhood with a concentration in connecting artists to one another. You’re going to want to hang on and listen to part 2 because that is when ric and anne share the ways that they were able to maintain the connections that they made one year ago in anne’s neighborhood with other artists virtually during this global pandemic. So when you listen to this part one you’ll be introduced to a lot of the people who you’ll hear about again in part two, only in the second part it is going to be a little bit trickier to maintain these connections, and I think you’ll hear a lot of hope in both of these stories. (1:09 – 5:41) Ric: Okay my name is Richard and I work for Starfire Council in Cincinnati Ohio, I’m a community connector there and I’m here today to interview Anne Gerhart who I’ve been working with since February and today is June 12th, 2019. Anne do you want to say hello and tell us a little something about yourself? Anne: Uh sure, hey everybody I’m from Cincinnati Area, I’m Anne Elizabeth Gerhart, I’m 21, and yeah I think that’s all I got so far. Ric: OK, Anne and I started working together in February after I first met you and your mom for coffee, started talking about your various interests and it seems like creativity is the one thing that flows through. You are an artist a poet and you do lots of different kinds of art. What are some things that you do when you spend time making art? Anne: Well I like to paint, I also do canvas painting, sketching, I also draw and I also take pictures of really cool things. Ric: Theres a wide variety of different creative outlets that you enjoy. Anne: Yes. Ric: Different artistic media that you enjoy, you said painting and drawing, and you said photography, see I didn’t even know that one! So our idea was to work together to meet people who shared the same interest as you, try to make some connections in community, to build some new relationships and deepen and strengthen the friendships you already have in your life. And we started out kind of casting about around town to meet other people in the arts and crafts community. Did you want to mention any of the places we went together during that process? Anne: Yeah I can do that! We went to the art museum, went to look some art paintings there, we also went to arts shops, we went to indigo hippo the crafty place Ric: That’s right! Is that the place near Findlay market? Anne: Yes, we also went to Michaels. We got to learn something new and crafty, we went to the downtown library and went to the makerspace and got to make some buttons. Also we also went to luckman’s and talking about art work. Ric: I’m glad you mentioned the museum because when we first started out together, to get to know each other, to get more acquainted, to learn more about your interests since it became clear right away that your primary interest is art, we started out at the museum, the beautiful Cincinnati art museum, up in Mt. Adams we had a great convo that day and that feels like a place we might turn to for inspiration from time. But you’re right, from there we went to check out different art stores and we did pop into Michaels, I remember you buying something for your grandmother’s birthday. Anne: Yes I made her a cute necklace and I got her some fake flowers. They really don’t have a smell but she really likes it. Ric: Yeah that’s right, We found a jewelry making kit there too, it was in their clearance rack too, only a couple bucks! Anne: It was really hard to put jewels on it, it was really really hard to put them on Ric: MmHmm yea. That’s right (5:41 – 7:29) Ric: We set up at Luckman’s as we often do, the coffee shop in your neck of the woods where we made friends with the barista there named Maria, we might even pop in there to say hi on our way home. Ad another guy there named Trace? Hes there fairly often Anne: Sometimes if we do go to Luckman’s we always see Ric’s buddy, We always see Simon! Ric: Simon’s another customer there, we end up talking to him about music, art and movies it turns out your family takes vacation to the same part of Florida where he visits his family in the summer Anne: Yes I remember that, it’s really fun down there, it’s cool. Ric: Anyways, We took that jewelry kit that we found real cheap to Luckman’s coffee shop. But you did a really good job at putting that necklace together. Anne: She loved it. Ric: She loved it? Anne: Yes, one time when we went to visit my grandma, she has been telling me my granpa has been telling me how nce it was that I would get my grandma fake flowers that don’t smell Ric: I think you also mentioned that we popped into Indigo Hippo, a thrift store downtown Anne: Yes, they have really old stuff Ric: Old stuff, repurposed stuff (7:29 – 9:00) Ric: I feel like we really struck gold when we discovered the hobby pop arts and crafts shop right there in your neighborhood where beth betcker is the owner ot the shop and her assistant Megan. They just embraced us right away. They said you come by any time and make art with us Anne: And it’s free you can take your art home with you Ric: You’re right, you can take the art home with you! Anne: For free. One time I made some thing really cool. I have a lot of crafting ideas. I made a dog canvas art. I mad Breezy Woods. Breezy woods is actually a dog in a movie. I got to make that on a canvas. Ric: Beth had some great suggestions along the way, and you two hit it off right away and we fouond as we were looking around town to meet people who are interested in arts and crafts, and more importantly to make some new friends and build some connections in that community to try to work on new projects and goals together to make new friends in that community and then to work on projects together with them and it looks like we might have an opportunity to volunteer on a semi regular basis helping Beth and her assistant Megan at the shop. (9:00 – 11:05) Anne: I have a few questions for Ric. Ric: You have questions for me? Anne: Yeah! Ric: Oh okay! Anne: My main title for the questions is being with Ric has inspired me to do new things and I have two questions for Ric: My first question is what is your favorite thing that we did? Ric: Wow. Well my favorite thing we did, I’m really tempted to say it’s the day we discovered Beth Becker at hobby pop shop. Anne: She’s really cool. Ric: She is really cool and that felt like we had spent several weeks looking for her and we finally found her right in your back yard. So that’s a close second. I have to say my favorite thing was the day we were at Luckman coffee shop and you showed me your poems! Anne: Yes I’m actually a poet and I write my own poems. Ric: I didn’t know We had been working together for weeks and we had been talking about arts and crafts and drawing and painting and making jewelry, you’ve done all these creative things! I think that you have this creative drive and artistry inside of you, you live to make stuff. It’s very beautiful that you make stuff and you give it away, like the card for your mom. Anne: Yes Ric: But the day you showed me your poetry that’s my favorite things because I was pleasantly surprised because there was this whole other creative side of you that I didn’t know about. And you had a whole notebook full of your poetry with you that day. Anne: Yes um I actually just finished my poems all this week. And I’m actually a songwriter, I write my own songs and I produce it to my piano. (11:05 – 12:22) Ric: So what do you think about this journey so far? Anne: Well um..what I do with Rick is really fun and being inspired by new things Ric: So what has it been like for you meeting people? You know like showing up to new places and meeting new people like Beth at the hobby pop? Anne: To me meeting new people is like inspiration for me because I love talking to people and being with people Ric: That’s great. What do you think looking into the future what are the possibilities that you can imagine for this journey as we move forward and what are the risks and challenges you see? Anne: I don’t see any challenges at all but I’m just trying to do my best and meet new people Ric: Yeah, I feel that about you too. I think you are a person with a great many gifts. Your perspective on the world is that you don’t even see challenges. You just get out in the world and meet people and make your art and by making your art and sharing with your friends and family you make the world a better place. (12:22 – 14:50) Anne: I have a last question for Ric Ric: I didn’t know you had any questions for me so this is a surprise Anne: My last question for Ric is name a time we talked about art. Ric: Wow, I would say between feb and jue of 2019 we have been talking about art nonstop. This conversation we are having right now started back in February and we are still talking about art. I guess i If I had to mention a highlight in there I know I already mentioned this, but finding out you were also a poet that was a big day for me and that first day too walking through the museum talking about what we saw there the kinds of art we enjoy, how the different paintings and sculptures and tings resonate with you that was a good day and again up at the hobby pop shop where we finally made some friends there that feels like another part of this conversation about art making and creativity that was a real highlight for me when we discovered them and found a way that not just that we appreciate what we’re doing there but we feel like they are a part of your tribe, like these are your people, they are part of your tribe of creative artsy people after looking for weeks around town. Very fun people to be around, right there in your neighborhood! Anne: Yes Ric: One of the first things we did together with Beth and Megan at the hobby pop show was paint rocks, do you remember that? Anne: Yeah I remember that Ric: And that was for a local, not really a fundraising, but They are raising awareness of a young girl who sadly passed away where they put a website and hashtag on the botton of the rock and then you paint it a colorful pattern and then you return it to the wild so someone will find it on a trail or a city sidewalk and when someone finds it they turn it over they will see the website and the hashtag. You remember that? Anne: I remember that, Yeah Ric: So art is where you find it and for you I think you are one of those people that art is everywhere you look, art is everywhere you go. (14:50 – 17:08) Anne: I just wanted to add something about art if that’s okay? Ric: Absolutely Anne: To me, art is like a passion to me because it’s like a gift Ric: It is isn’t it? And I really appreciate that about you.You said that a moment ago and you aren’t nervous. And I feel that about you, that this is just something you naturally do. It just flows out of you you don’t have to fake it, or worry about what other people think because you are who you are and your art is what it is and it’s just a natural extension of your personality. Anne: Yes. Ric: That’s a beautiful thing. Anne: Yes! And I was thinking that maybe I could sell my own artwork. I’ve never done that before and I’m very excited to do it, so I can make some money of my own. Ric: That would be nice wouldn’t it? Anne: Yeah and maybe I can show everybody my artwork! Ric: Yeah Anne: And if people are listening to this from the Cincinnati area right now if you have any art requests you can always let me know and I can come up with something for everybody who’s in Cincinnati Ric: That’s fantastic. Well I’m excited for you in this next chapter of your development as an artist. Many artist never find themselves in a place where they can create art and maybe even make a little money from it. So I do hope that works out for you, that’s exciting. Anne: Yeah Ric: Did you have anything else you wanted to say before we wrap it up? Anne: This is like an ending part if you want to say it with me? Ric: Ok sure Together: Wake Up USA! Anne: Thank you so much for listening
It May Not Happen Worldwide in Your Lifetime: Brave Steps Towards Community
While everything in our world is telling us to lean out rather than lean in, I challenge each of you to think about ways you can lean in.
Dreaming Ordinary - with Mark, John & Connie Susa
It’s a narrative that often gets repeated to parents of young children with disabilities: the more services the better. But John and Connie found a different way early on with their son Mark. Their family’s dream was bigger. The vision they have for an ordinary life really gets to the heart of why this podcast started - to offer out ideas for families and people with disabilities to go after more in life than the expected route of disability services and segregated activities.As founders of the Plan Institute in Rhode Island 15 years ago, the Susa family connected with Starfire to learn how to launch community projects. They said that this way of bringing people together, over a shared goal like a community garden, generates a certain magic - almost instantly.If you are someone who wants to think seriously about how you and your loved ones spend your time, how to connect more deeply in community, and ways to make longterm relationships a reality, this episode is for you. GET THE PODCAST <a href="https://podcasts.apple.com/us/podcast/more/id1461268467" target="_blank" class=" image-slide-anchor content-fill " > <a href="https://open.spotify.com/show/7AiZiLQ67ySDzIYAtq0CGo" target="_blank" class=" image-slide-anchor content-fill " > <a href="https://www.stitcher.com/podcast/starfirecincy/more-3" target="_blank" class=" image-slide-anchor content-fill " > <figure class=" sqs-block-image-figure intrinsic " > FULL TRANSCRIPT:CONNIE: - I have heard speakers talk about this concept as a way of healing the world and as we’re in the midst of the COVID19 virus outbreak right now, I think the world could use a lot of healing, not only physically but also in terms of relationships. We have a new neighbor who shares that passion with us, and it has been such a joy to get to know one another, to have a real give and take. I can see how if this were multiplied throughout communities, and states and nations, the world would be a beautiful place. KATIE: Beautiful. JOHN - I’m John Susa. I think what moves me for a lot of this work is almost a therapeutic plan for me. I grew up very very isolated and I had very few interactions with anybody besides my family. And most people would have described me as being very introverted. When people asked me when you were a child, what did you want to be when you grew up? My answer was always the same. I wanted to be a long distance truck driver. So I could sit in that cab and not have any human interaction for days. And if left to myself that’s probably what would have happened. But instead I learned that if I pushed myself a little bit and started interacting with people and meeting people then I could change that desire to be a loner. And so I think the reason I’m so involved in all of this stuff is still mostly for myself to avoid falling back into be a loner. So I made pretty much a conscious decision that I was just going to change my behavior first. And of course after I changed my behavior for a while my attitude started to change.Fast forwarding then to when you and Connie met, and you had children and you were - down the road, you know, deciding how to engage as a family in the community, what were some of the things that you had to consider first to be connected?JOHN - I think for me the recognition that Mark developmentally was experiencing life differently than others made me realize it was going to be very helpful if I became more engaged in the disability advocacy world. I was kind of driven by two different quotes that were in my head that I learned while I was in the military. And they’re very a-typical but they’re very powerful. One is from Johann Goethe a German philosopher and he said, “Dream no small dreams for they have power insufficient to change the hearts of men.” That’s been something that I’ve always come to recognize as a very powerful piece of instruction and advice. And I saw that there were people who were encouraging us in many ways to dream small, to be satisfied with what Mark is able to do, focus in on his disabilities, spend your time searching out services. In many ways that was dreaming small. There were occasionally people who would say, “No, no, no don’t do that. Dream big. Dream like Mark’s future is limitless. Dream like if you just provide him with all the opportunities that life has to offer, you will be amazed at how much he is going to accomplish.” And that is what I took from Goethe, dream big. And we have ever since. And that really has kind of put us into contact with a lot of other big dreamers. It’s those big dreamers that really have changed the world works for people with disabilities.KATIE - Beautiful. MARK - Excellent.CONNIE: - For me in terms of community building, I think one of the greatest advances has been our church. Mark turned three at the end of December.MARK - Right. CONNIE: And three-year-olds were supposed to begin in what most people would call “Junior Sunday School.” When Mark was three, we were still carrying him - cradling him in our arms. Did you know when you were three years old you couldn’t sit up by yourself? MARK - No way, really?CONNIE: Truly. Mark just kept attending our Sunday school classes with us and about two, three weeks into that sequence one of our friend’s who taught the three year old class, the Sunbeam class, came to us in the hallway and said, “Why hasn’t Mark been in my class?” And I said, “Edith - look.” As if seeing where Mark was at that moment meant everything. And she said, “Yes, but look at my role.” And Mark’s name was there, without x’s in the attendance boxes.And she said, “We really need him in our class.” And I said, “Edith he can’t even sit up independently.” She said, “Well we could get a highchair and we could put pillows all around it so that he can sit up.” And I said, “We’re not even sure that he can understand what you’re teaching the other kids.” And she said, “That doesn’t matter.” She said, “The reason I need Mark in my class is because all the other kids have so much to learn from him.” MARK - Really.CONNIE: And while we had been working seriously on stimulations and Mark had gone through early intervention and we learned about you know sensory stuff and what have you. We were doing that once a week, in a group and the rest of the time at home. But what Edith had said really started Mark and us on the path to community. Mark now…well, tell Katie what you do at church.MARK - A lot. CONNIE: - Some things that you’re responsible for?MARK - I’m secretary. CONNIE: - Secretary for what?MARK - For attendance. CONNIE: - Yup, and you set up appointments for interviews.MARK - Set up appointments for interviews. CONNIE: - We were amazed, Mark was enfolded in the arms of these people who understood all about community because that fits the teachings that we have as Christians. Going back to what Edith had said to you that you know, diversity and having different types of learning in a classroom is really really really important and once you accepted that invitation, what unfolded in that first year? JOHN - What I remember is that it reinforced something that I came to realize, everybody became comfortable and it was now normal and accepted that Mark would be part of that congregation. Once people got to the point where they were comfortable because of exposure and experience they relaxed and they accepted Mark for who he was. And they didn’t feel the need to treat him any differently than they would any other child. It reminds me of another one of my kind of guiding principles and this comes from a guy, Rudolf Steiner, talking about early childhood. Rudolf Steiner is the founder of the Waldorf educational system. Are you familiar with that?KATIE - Yes. JOHN - He said that, “There is nothing more therapeutic than normalcy.” That was a piece of advice that was given to us by a good friend, developmental pediatrician, when Mark was finally identified as having all these developmental challenges. The meeting at the end of the two-day evaluation process was nothing but a group of people who were very pessimistic about Mark. “He’s not going to walk. He’s not going to talk. He’s probably not going to be aware of you. He’s certainly not going to hear.” A whole bunch of things, they all at the end say “Well, good luck, take him home and love him.” That was their advice, which is good advice but inadequate. When they all left, their boss who was sitting at the back of the room observing asked us to go into his office because Connie was bawling. Sig closes the door and the first thing he says is, “Don’t believe a word of what those people said to you.” And I said, “Sig if you say that, why didn’t you stop them before they started?” And he said, “You know all those people in that room were doing or could do is describe Mark now, as they see him. They could not possibly describe Mark in the future. I believe if you believe them, that future will happen. If you don’t believe and you adopt the approach that the best thing to do is to have Mark experience as much normalcy as possible he will become a different person. He will become more like the ‘normal kids’ whatever that may be. Every person will develop depending on how much they’re exposed to.” So he said, “I’m not going to let them label him because that will result in other people reading the report and it will only help them treat him in a stereotypical way based on his label. I’m just going to say he’s developmentally delayed.” And his advice was, “Take him home and love him but then help him have every normal experience as other children.” And that kind of guided our thinking really from then on. KATIE - And you know, dreaming big in this instance is to dream ordinary, to dream normal. JOHN - Exactly. Yeah. KATIE - And sometimes ordinary is the biggest gift anyone can have.JOHN - Right, right. It’s kind of counterintuitive because in the world of disabilities a lot of times people think that dreaming big means getting more services, the more the better, the more services the better. Steiner said think seriously about substituting every hour of normalcy with an hour of service because that hour of service is removing that person from normalcy. So it’s almost in the disability world it’s almost a flipping of thinking that that has to happen. CONNIE: - Be concerned if you were just going to services. JOHN - Be big in your thinking by vying for normalcy. KATIE - Yes, so even in services are... they’re not normal. It’s interesting. JOHN - They’re not normal. CONNIE: - What’s more important is that Mark participated not only in that class but every subsequent class. And when Mark was eleven years old we took our school district to a due process hearing because they had adamantly fought us for two years in bringing Mark back into district from a segregated day placement that was anything but normal, because they were sure that Mark would not act appropriately in a classroom setting. They were sure that Mark would be a disruption to other students, they were sure that he might even be self injurious or injury other people, because they were thinking in terms of stereotypes not in terms of who Mark is as an individual. And do you remember Jennifer Coats, Mark?MARK – Yeah. The one with the power.CONNIE: - She came to your hearing. MARK - Right. CONNIE: - And she told everybody just how you act in a classroom setting. That you raised your hand just like that, that you participated appropriately in singing time, that you sat with your class and no additional extra support. That you sang the songs that you answered questions, you gave talks. MARK - Right. Yes I did. KATIE - So it sounds like Jennifer had another piece of Mark and your family’s story along this journey to dream big, to live an ordinary life? She made an impact during that hearing.I want to see if we can dip our toes briefly in the water of the day placement that you mentioned, that Mark was in, and how that was anything but normal. Can you explain how abnormal it was or what about it made it not ordinary?CONNIE: - Sure, the very fact that there were multiple kids with multiple disabilities just ate up so much of the instruction time. What else do you remember about it? JOHN - Everybody in Mark’s class was just like Mark. Six little kids, wheelchairs. So the biggest thing I believe happened when he left there and went into a regular classroom is that for the first time he started culturally and socially experiencing life as every other eleven, or twelve or fifteen year old does. KATIE - You agree with that, Mark?MARK - Yes, excellent. KATIE - Yeah and I think that’s a good segway to the phrase ‘a good life’ that is something you hear a lot from Al Etmanski and Vickie Cammack. It’s a big part of the PLAN institute model and you all have been involved with PLAN at Rhode Island for quite some time. So what ways has it helped? CONNIE: - John first heard Al speak, he recognized the wisdom in their model that we always acknowledge how deeply we depend on the work. When we brought PLAN (Personal Lifetime Advocacy Network) to Rhode Island 15 years ago we knew that we were standing on the shoulders of giants. The two things that we have focused on in trying to replicate their model is we help parents put all their ducks in a row, plan for the time that they are no longer going to be there or able to enrich the lives of their sons and daughters out of the love and the family history, the precious relationships. The much more important part of what they did in Canada and what we did in Rhode Island is to build a personal support network around the member. The family joins on behalf of their son, daughter, brother, sister and they engage with a facilitator to build and maintain that support network so that it’s not just every individual having a relationship with a person at the center of the circle but it is all those people getting to know one another, to recognize one another’s strengths, to trust one another. Between all those group gatherings individuals will do things with the members at the center, with our loved ones. And as parents we try to do that early enough so that we can fill in the important parts of the history. So the support network is really there to build a circle of support around a person, and yet also it’s not just about the person in the center it’s about everyone in the network joining together, being in relationships together, and in that way being in a community. Where are you now with the support network?CONNIE: - Right. Mark has had a personal support network for the entire time that PLAN has been in existence in Rhode Island. It really does take some time for relationships to mature that if we had to step off the Earth the next week, this would go on. MARK - Right.CONNIE: - And that it would provide Mark with people that he could depend on, people who were real friends, who had proved that over time. MARK - Right. CONNIE: - People who enjoy spending time with him. And we feel secure. In one of the questions that PLAN Institute seems to start with is what would happen to my loved one after I pass on, if I’m not around, if we’re not there to help what will happen? And so starting from a young age it sounds like you guys have done a lot of work to build that support network so that in a time of disaster or otherwise that there is somebody there for Mark?JOHN - Right. When PLAN in Canada was first put together it was even before Al Etmanski, it was just a group of parents and they hired Al. They originally thought that they were preparing for their demise, the focus was on what’s going to happen? What they quickly discovered was that yes they were doing that but they were also starting to develop a stronger sense of security and the feeling that their son or daughter was safe. There were some very positive benefits to the parents while they were still alive. And they figured it out that it was the existence of this network that provided that sense of security. And not only the sense of it but the actual security. KATIE - I love how you put that, that’s very clearly stated for me and I think it’s actually it starts as soon as you begin to community build: the benefits, the magic, the parts of it that are really just supportive feeling begin right away. And every parent needs that and we need to raise our children as a village. You all as a family have taken the brave step being able to say well even though some experts are telling us otherwise we’re going to not believe that and in doing that we are going start this support network early and we’re going to build and the more people who have joined in along the way it sounds like the more momentum has build towards this? Tell me about your family’s leadership in the community as it relates to your street, and how your support network, Mark, how they were involved in that process? JOHN - So as we kind of navigate our life with Mark, I’m always looking for things that are in the way of him achieving greater independence. So this little project about looking at Warwick Avenue, Mark and his brother live about two and a half, three miles apart, they both require a wheelchair in Mark’s case or a scooter in Frank’s case. And so when Frank moved back here to Rhode Island we thought, “Wow wouldn’t it be nice if these two guys could get together once in a while without Mom and Dad having to be the go between.” We started looking at this road and we recognized very quickly that this road was a problem. I’ve known that this road was a problem probably for at least fifteen years now, but I’ve not had a real strong reason for us to say, “Let’s do something about it.” So we naturally thought that this is going to be something that is much more powerful if we have a group involved. We had a group, we had Mark’s network, they all know him, they’re comfortable with him. So we posed the idea, the project, people thought this is great. And the fact is that there is appropriated money from the Department of Housing and Urban Development every year for infrastructure maintenance. But the fact is also is that many states use that money for something else besides not worrying about wheelchair accessibility. So our complaint kind of brought this into the public eye and I’m pretty confident that we will be able to see some change and some action as we kind of work through the process. But it is also what ever you want to call it, karma, good luck whatever, that here we have our network and one of the powerful things about a network is the fact every member of that network has other connections with other people and within our little group we were able to identify somebody else who is not part of Mark’s network but is only peripherally connected, kind of, who is going to be very helpful in resolving. And you never know who you may know until you start talking and working and interacting in community. Every network is a little community and every little community has a lot more resources than we certainly had by ourselves. Absolutely and maybe you can share how some of the other families you know in Rhode Island who have similar networks of support like you all do around Mark, how they’ve utilized their networks of support to do other projects in their communities with Starfire's facilitation support. What are a few of those other projects that have happened or sprung out of this collaboration?JOHN - So in about a month or so another network is going to do a project that is to create a mosaic welcome sign to this little town’s community garden. It’s prompted by a family who have a son who has very significant disabilities but who is a very very talented artist who is really good at sketching and painting vegetables. So they’re going to take his work and they’re going to create a mosaic welcome sign. This is a family I’ve known for quite a while, also been part of PLAN for a while, and they have dramatically really been able to bring their son like we did out of a special school into the real world and Sid has really blossomed as a result of that real world life experience. Why do you think it’s important for families to lead efforts toward building community? And how do you think families are helping other people in the neighborhoods see the light of community building, the magic of community building?CONNIE: - We’ve been told for years on end that certain federal programs are underfunded and that there may come a time that those things are no longer available or that their support and services get shrunken and Mark loves people, he’s a very social person. MARK - I do. CONNIE: - You do and you contribute in a lot of ways. MARK - Right. CONNIE: - And we’re very proud of that. MARK - Right. CONNIE: - So just in terms of politics alone it’s important that we give our sons and daughters opportunities to show that they can contribute to society. JOHN - From our own experience and from the experience of a lot of people we know that the amount of community, acceptance and inclusion that people with disabilities experience is really very much influenced by how much their family is integrated and included in their community. Our experience was that after Mark started going to special private school we spent more and more and more time at that school helping them with fundraising, helping them with all kinds of stuff and we spent less and less time in our community. We often meet family with children with disabilities and very quickly they’ll say, “Oh, but we don’t know anybody. We’re not engaged in our community.” And without spending a lot of time we recently were able to recognize that that was because they were spending their time in a different world than their community. So we really really strongly encourage people to become more engaged and more involved. One of the ways is get engaged in a community project and all of a sudden you know a bunch of people, not all of those people are going to become part of their son’s or daughter’s network but some will. And that’s because all of a sudden they know people who have common interests, there are all kinds of things that happen when you start doing things together. These projects are just ways people becoming engaged in their community, as a family, and then as time goes on for that family to be unique and having people have a relationship with that son or daughter who has a disability.Absolutely. And maybe we’ll end with a quote here I think that is related to everything you just said. It's by Al Etmanski he says, “People are naturally ingenious when faced with adversity.” What ways do you think you all have managed to be ingenious?CONNIE: - With the COVID19 crisis, Mark’s facilitator of Mark’s support network is putting out requests with two things. One to ensure them that Mark is no more susceptible to this virus than anyone else in the community is. More importantly, because Mark has benefited so much from his contact with all the members of his network, she is going to ask them to engage with him regularly remotely as long as they cannot engage with him personally. He reads and he can enjoy texts and answer emails and appreciates post cards and greeting cards and phone calls.MARK - Right. CONNIE: - That’s an adaptation that we’re making right now. JOHN - We’ve learned that we really have to remain flexible. We have to depend on other people’s creativity and let them interact with Mark in their way. In the beginning when he was younger people would always ask us, “What does Mark like to do?” And a long time ago we basically came up with the same answer, “Well I don’t know, ask him.” Not only ask him but invite him. Mark surprises everybody with his ability to express his enthusiasm for things. KATIE - I love how you turned a question into a way to mobilize community to be more involved and be more inclusive. It’s wonderful to meet and hear your story. JOHN: As parents we’ve benefited from such wonderful and powerful messaged from guys like Tim (Vogt) and Al Etmanski and David Wehterow and John O’Brien. There’s a million of these messages that we’ve been lucky enough to try and hear and try and incorporate into what we’re trying to do for Mark. That’s what it’s all about we’re doing it for our family first - and hope that other families will see what we’ve done and will say, “Hey if those guys can do it so can we.” That’s the power of this movement. KATIE: It’s actually moving, it’s doing something. That’s the exciting part of it. Thanks for being movers, so great to meet you. MARK: Good-bye.
We used to do things like this | with Tasha and Safi
FULL TRANSCRIPT available at starfirecincy.org/cincibility
A Tale of Two Neighbors
2014: “What happened to Annie?” I asked her, my feet still in the street, car door swung open. I interrupted the walk they were trying to take before darkness overtook the sky. “She died.” Like being asked cream or sugar for one’s coffee, without hesitation or a hint of melancholy, she answered quickly. The nonchalant response was disconcerting. “I know that…” I trailed off, my eyes fixed on the For Sale sign in our yard, embarrassed that I wanted to know the specific details. “I mean, what happened to her?” Annie was my neighbor. We borrowed her lawnmower one summer when the one we had finally died. The rubber primer rotted to dry dusty pieces and the motor gave in to our negligence. We hadn’t properly cared for it the last winter, tucking it haphazardly under the deck, leaving it exposed between wooden beams. When we also didn’t have gas in our garage and had to walk back across the street to use hers too, we offered twenty bucks. I expected she wouldn’t accept it, after all it was an ‘it’s-the-thought-that-counts-gesture’, that neighbors do, but she did. She took the $20 in exchange for what she insisted would be “unlimited mower use forever.” The next day I found a card in my mailbox from her with a coupon to Chipotle for buy one get one burritos. She was funny like that. When she wasn’t in her yard, I didn’t think much of it. It was getting colder and an early snow had cancelled schools and caused delays early in November. By the time I noticed, she had already been dead for 12 days. Some weeks she was frenetic, picking clover and crabgrass out of her lawn and edging her sidewalk til thick stripes of soil framed the grass and bare spots dotted the lawn. Other times, she’d be canvassing the street collecting trash with a plastic grocery bag and cordless phone in her hand, like she was awaiting an important call. But mostly, she was peculiar, peeking through her front window and quickly disappearing behind a curtain when I’d catch her looking. At night, from my bedroom window, I’d see her standing in the corner of the shades, looking out. Never raising her eyes from the dog she had tethered to the leash Sandy, my next door neighbor answered me. “They thought suicide, but I think that’s unlikely. She was real close to her family. Probably was drugs. She was on a lot of different meds.” I came home once to find a rosary enclosed in a gift bag tucked inside my screen door. The note explained the rosary was blessed by Pope John Paul II on a trip she made to Italy years ago and she wanted my newborn daughter to have it so we could remember her when we moved. A week later she was found dead in her home. Sandy said she had been there at least three or four days before anyone found her. Sandy’s dog pulled on the leash, signaling her intent to continue walking. Her son tugged on his mother’s coat with his gloved hand. “What are they gonna do with the house?” he asked, bundled in a puffy blue coat and scarf. A few wisps of snow had started to fall as we stood there. The electricity was shut off and the house was nearly invisible at night, a silhouette lighted only by a streetlamp some doors down. Fake candles in the window gave the impression that someone might have still lived there. The batteries died about a week after they were put up and all that remained before we moved was the dark vacant skeleton of a home. I looked out my bedroom window at night, holding my newborn daughter, and squinted my eyes, expecting to see the curtain move. 2019 We moved in 2015. A bigger house a few blocks away. Same neighborhood, different neighbors. Our first dinner together in 2016 was meatloaf. The classic kind that German-descendants make around here with onions and ketchup and baked beef or pork smashed into a bread pan. There were garlic potatoes and white bread with butter and a little fold out table set in the middle of their dining room. It was familiar, like stepping back in time and eating dinner with our own grandmothers. Todd pulled out his portfolio of drawings, pencil and charcoal sketches of landscapes, trains, Cincinnati landmarks, his children “Danny when he was 4”, his wife “this one here is Lydia in her wedding gown 1968.” Lydia’s eyes met Todd’s across the folded table, and they smiled at each other. Todd and Lydia had lived there for decades before we moved in. Todd, an older man who used a wheelchair, was a porch sitter, overlooking our street below. A nod became a wave, a wave became a “you got a minute?” and from there my children we were picking strawberries from their backyard, giving gifts of dandelion bouquets, and coloring pictures for them. Lydia watchfully eyeing the kids scootering back and forth down the sidewalk of our busy street, yelling from time to time to slow down!, get down!, or turn around! They had grandkids of their own, at least 7 with more on the way, but it didn’t stop them from bringing back gifts from their vacations for mine – a collection of Disney characters once, coloring books another time. A jumbo bucket of sidewalk chalk another. When Annie died in 2014, we had no idea. It was twelve days before we noticed. When Todd died, we mourned. We saw the flashing lights, the fire truck, the coroner. We walked next door the next day, and hugged Lydia on her porch. We bought a plant, wrote a card, and checked in on her weekly, invited her over for dinner, for a drink, even though we knew she didn’t drink at her age. She declined, graciously, a widow in mourning at her own pace. Our family room window upstairs looks down into Lydia’s living room below. Some nights, when her son Danny visits, my son, Rowan will see them, his striking resemblance to his father and say “Look Mama! Todd didn’t die! He’s back.” We talk about how everyone, eventually will die. And that no, Todd isn’t back. We talk about our sweet neighbor Todd and how he used to watch the bees and get our mail the summer the mailman refused to walk past our hive. And then, we text Lydia and ask if she wants some left-over cake, needs anything from the store.
The Worth of Small Things
<figure class=" sqs-block-image-figure intrinsic " > “His world has been so small. He doesn’t see. He doesn’t hear. He doesn’t speak.” We sat in our small group, listening. The struggle she described was very different than the reflections others had shared around making introductions at a local sewing circle, or how to help someone remember a friends birthday coming up, how to collect more donations for the Humane Society and grow the project to include more people. Bonnie was at a loss. She really didn’t know what might interest Ted. He couldn’t tell her. He couldn’t hear what she might be suggesting. He’d had no spikes of achievement in his life to her knowledge, no big momentous occasions to celebrate over his 50 years of life, no celebrations that she was aware that might give her some ideas, a clue into what he might enjoy, no hobbies unique to him that anyone had ever mentioned in meetings or MyPlans. Mostly, Bonnie said, she wasn’t sure where to even begin. The group was quiet. Reflecting on the depth of work that might be required to begin to explore what might make sense for Ted, what goodness the two of them could work on together if Ted himself couldn’t tell her. Instead of suggesting ideas, we simply held the space that Ted was worthy of a good life. And any small nudge in that direction in itself would be good. Just begin, the group agreed. Explore. If Ted hadn’t had any experiences, the world of experiences was new and open to him – and wasn’t that an exciting problem to have? Bonnie left the meeting with a bit more encouragement. Knowing, that whatever small step was next for her and Ted, was worth doing. That there was a worth in small things – going to one new place, meeting one new person, exploring one new hobby, having one day to start thinking on what a good life might look like. And knowing that a good life, starts with doing one small thing at a time.
Attention Seeking
“She’s like a totally different person when she’s not in the group.” She remarked. “You know, she’s actually smart, and kinda funny. Not at all like when she’s driving me nuts on the workshop floor.”For six months in 2019, Starfire’s team facilitated learning session with another Ohio organization. Our aim was to help provide a vision and tactical steps to work their way out of a day program and sheltered workshop more frequently, to provide more individualized supports, and to launch a mini project in partnership with a person with a disability in the community. Our sessions were part brainstorm and part affirmation that this was new and difficult work to start to think of our roles outside of structured 9-3 program models. The conversation shifted to be about one particular “client” served by the organization and the frustration a staff person had had with her that day in the program. “She just wants attention.” Another staff worker chimed in. “That’s all it’s about with her. Attention.” I nodded and told them the story of Melanie and her “attention seeking.” In the days of the day program, Starfire U, when our building on any given weekday held over 120 people with developmental disabilities and dozens of staff leading outings and activities, Melanie attended our program. Sweet natured and whip-smart, she’d flash a smile asking about your day, your kids, your weekend plans, your thoughts on recent movies, recipes, and just as quickly furrow her brow and be confused as to why someone would be mad at her for: kicking them on a Metro bus, slapping them on the cheek, for moving their stuff without their permission, for yelling at them, for pushing them, for telling them to shut up, for calling them names under her breath, for cursing at them.I am not proud of it – but in a frustrating afternoon, after many requests from multiple staff for Melanie slow down, make better choices, leave the room, get a drink and take a breath, and on the cusp of having to write up another incident report about her “behavior” I put on my coordinator hat and printed out every single incident report ever written about Melanie that past year – January, January, February, , May, May, May, August, September, October, October, October... A dozen or so, stacked up in succession. Incidents documenting her behavior with other people with disabilities, towards staff, on the bus, in the program, and in more than one instance, her behavior bullying others from the day program online… And I began to read them to her aloud: “When Lena arrived Thursday morning around 8:15am she asked to speak with a staff member, John in private, voicing that she had been hit by another member (Melanie) at the bus stop the previous afternoon after leaving Starfire. She told staff that another member, Melanie had hit her unprovoked with a book while waiting for their next bus. Staff told Lena that they were concerned about the incident and would talk to Melanie immediately. When Melanie arrived at 8:00AM, staff member, John, pulled her aside and asked her to explain the incident that happened with Lena. She expressed that at the bus stop Tuesday afternoon Melanie had yelled at her multiple times before hitting her with an open hand in the collar bone area.” Melanie cried, tears streaming down her face, and, I paused briefly, only to ask her ask her if I should continue. Should I continue to read the way people see you? The way you treat them? She said no that she’d try harder and better and we spent the next 25 minutes or so alone in a conference room chatting. Me reassuring her that she was a good person and our actions don’t define who we are, but that we had to try better. Her smile was quick to reappear, the tears completely gone, her chipper self, returned. I don’t remember what happened next. I imagine a call was made home, a meeting might have happened with Melanie’s team and another incident would have occurred again repeating the same cycle.The memories of the day program have since faded and the frustration of what those days felt like – the 9-3PM grind transportation drop off, attendance taking, doing art projects, baking projects, yoga, guest speakers about random topics – field trips to museums and zoos and Red’s Hall of Fame have also begun to fade. I’m able to really process what these types of experiences meant and mean now that I hear them coming from the mouths of colleagues in other organizations. Was Melanie attention seeking? Was she merely seeking connection? Isn’t all behavior attention seeking in some way or another? Each incident report written about her, meant 1:1 time in an office with staff attention uninterrupted. Sometimes it meant sitting next to an office person and helping with tasks: shredding paper, assembling outgoing mail. The empty threats of phone calls home, new reports documenting “behavior” were another way that Melanie got some time outside of the group. Outside of the seminar of 15 people all learning about checking accounts, or healthy smoothies, or whatever else was put on the calendar to fill time, to build “life skills.”“She just wants attention.” “That’s all it’s about with her.”“She’s like a totally different person when she’s not in the group.”“She’s actually smart, and kinda funny. Not at all like when she’s driving us nuts on the workshop floor.” Attention seeking behavior wants a response from others. Validation, to be noticed. Which leaves me asking, isn’t everything attention seeking? Don’t we all want a response when we talk or ask a question? Aren’t we all seeking validation that we’re doing okay, on the right path. Don’t we want people to notice when we’re having rough days, when we’re excelling, when we just need some reassurance. Reading each incident report was shameful. It played into a power dynamic that I am not proud of. That as coordinator of the day program, I had the authority over Melanie to make sure she understood she was “bad” and that if she couldn’t be “good” then we’d just have to do something about that. A few years removed, I realize now that the attention she was seeking was in the small moments of reassuring her, she was a good person, that I saw her as such, and that, it’ll be okay.
It Is Not The End, It’s The Journey That Matters
<figure class=" sqs-block-image-figure intrinsic " > For the past year and a half, I have been looking at this beautiful illustration of a plan or “PATH” for Grace. It has remained in its place of honor, in our kitchen—the heartbeat of our home, and hung proudly with some of my favorite oil paintings. It is a work of art. It is a work of love, friendship, and support. It is not the creation of one artist, but many. It is the work of people who inspire me to continue to swim upstream, not to settle – people like Tim & Bridget Vogt, and Jo Krippenstapel. Many other amazing artists contributed to it, Torie Wiggins, a beautiful human being and talented actor & director, Michelle Markert, an amazing musician and director of our church choir, Winnie Brubach and Joe Krumm, who are singers in the choir, and other artists whose work is based in the art of love, friendship, and community. People like Gail Webb, Barb Elleman, Ellen Fain, Amy Bailes, Elizabeth Pierce, Kara Broderick and Erin Broderick, Margot Brunette and the most important artist, my daughter Grace, with her brother Ben, her father Jeff, and me, Grace’s mum. I still remember sitting at my laptop thinking through the people in Grace’s life and in our family’s life. I remember being hung up on the fact that we have so little family here, in Cincinnati, and what that meant to Grace’s life, our life. I remember how nervous I was at extending that invitation to join us in thinking about Grace’s future. A life. That sounded so big, long, indefinite. I remember spinning about who to invite, who would say yes, how it would feel if no one accepted the invitation. It was like being back in my 20s again, putting myself out there, with the experience of rejection in my past, and the potential for rejection again, hanging like an anvil over my head. This time it wasn’t just about rejection of me, it was about the potential for people I know and like, rejecting Grace and my whole family. That seemed like too much to risk. Not knowing seemed easier to me. Envision ostrich with head in sand right now. Sometimes that is just easier. My heart doesn’t break. My dreams aren’t crushed. My friendships remain unscathed. I spent a lot of time thinking about what the invitation should say. I spent even more time, waiting to push SEND. Once I pushed SEND, my heart sank. I had put us all out there. I had risked our rejection, heartbreak and disappointment. Given that you see the photo of Grace’s PATH, you know what happened. Many people accepted our invitation and showed up. Those that had to say no, did so because they simply couldn’t be there, and offered to show up in other ways. It was a beautiful night and it has been a beautiful, enlightening, educational, and transformative journey. But. . . it wasn’t the journey I expected.At Grace’s PATH, we unpacked what was important to Grace. If you know Grace, she is pretty clear about what she wants her life to look like. It’s something like this, I want to have my own apartment, I’m not going to live with my parents forever. I am going to be an actor on Broadway in NYC and I’m going to have a penthouse apartment in Time Square. I am going to help make it possible for people who don’t have money to come to my shows. I want to perform in shows and have some of that money go to building schools for girls who have been forced into marriages and are now out, but never had a chance to go to school. This is my daughter. I am so proud of her. I am so proud of the young woman she has become. By the end of that night we had a plan--Grace’s PATH. Grace would put on a one-woman show, about women, at a theater. We had individuals who stepped up to help her do research. We had an acting coach. We had ideas of who to connect with around the city. The goal was specific and measurable as all good goals should be. We had objectives to achieve the goal. As a businesswoman, I felt like we had clarity and we were on a trajectory, which I expected to be a straight line. Fast forward to January 2020. Grace performed her one-woman show, “She Persisted” to two sold-out audiences at The Know Theatre, in Over-The-Rhine. Through these performances, Grace raised just under $2,000 for the Malala Fund. Brava Grace!It’s interesting though, while Grace accomplished these goals and so many people showed up, helped out, and supported Grace, what has really mattered is the journey, itself. We always talked about this as Grace’s PATH, but in some way it became our PATH. The journey taught us to show up more often and in more places. The journey of the PATH taught us that there are wonderful people who share Grace’s interests and really appreciate her thoughts and contributions. It reminded us that there will always be people who can’t see beyond Grace’s disability, but there are far fewer of these people. We learned that it takes time, it takes commitment. We learned that there are far more opportunities than we could have imagined. We learned that it wasn’t all about achieving the goal. It was about doing something, contributing in some way, along with other people. We learned more about what motivates and inspires Grace. Each one of us stretched. Jeff and I recognized that we needed and wanted to be part of this journey. We gained so much from being involved in Grace’s interests and we met new people, some of whom have become family friends who include Grace and expect that our invitation to them includes her too. At first, I saw our PATH as very specific and probably with an end, vs. a PATH that is a spark to something potentially life long. The process wasn’t perfect. In terms of the one-woman show, it turned out that Grace and I didn’t do a good job bringing in the people who offered to help with research. This was partly because Grace and I didn’t have something fully in mind. It was also that I felt like, I shouldn’t ask for help, because I can help Grace. We worked just with Grace’s acting coach, Torie, and while we feel so lucky to have worked with her on this and will continue to work with her, it would have been better if I had asked her to involve more people. I think it would have helped her, and it would have expanded Grace’s network of people. With all that said, the journey wasn’t a straight line and that turned out to be just what we needed. Grace became increasingly interested in more than just putting on her show. It is fortuitous that this is the 100th anniversary of women’s suffrage and there is a lot going on celebrating this milestone, around the region. We were also fortunate that Bridget Vogt heard Grace’s interests in the suffrage movement and women’s issues in general. She (and later Katie Anderson) started bringing Grace to the main branch of the public library and letting us know about events happening. Through Chris Smith at the library, Grace met Katherine Durack, a former women’s studies professor at Miami University, and a member of both the local and national women’s suffrage celebration committees. Katherine has become a true friend to Grace and our family, and we to her and her husband. Thanks to Katie Anderson, recognizing Grace’s feminist interests, Grace got connected with Sara and the other “Nerd Girls” who are working on a transcription project with the Library of Congress. Grace’s interest in strong women who have made a difference, spurred her to ask her transition program (think practical life skills program), Pathways, to see about getting an “internship” at The Harriet Beecher Stowe House. Thanks to people like Emily and Gwen at Cincinnati Museum Center, Grace is now part of the region’s planning committee for all things “women” and “suffrage” this year. Grace’s one-woman show was a complete success and she did an outstanding job. We were moved by all the people who showed up those nights to support Grace and us. Grace’s PATH turned into so much more than what we could have imagined. A former Montessori teacher of Grace’s wrote to us and said that Grace has inspired the next generation of girls, as her daughter immediately began researching the women who Grace represented. Grace is seen as an educator, as most people didn’t know all the women in Grace’s show. Grace’s participation in our church choir has gained her recognition and when she isn’t there, she is missed. The director of the Harriet Beecher Stowe House wrote us a note declaring that Grace is “an asset to the volunteer team.” Elizabeth Pierce, the CEO of Cincinnati Museum Center, has called Grace, “our local history ambassador.” John Faherty, Executive Director of The Mercantile Library wrote that Grace needs to stop by The Mercantile to see the books they have about women and said, “Grace is an endlessly impressive kid. And sneaky funny.” Yes. These are some of the “movers & shakers” in Cincinnati and while it seems like name-dropping, it is really more about these people being immediately valued by what they do and taking notice of and valuing Grace and her contributions. The people who have been in our lives over the years showed up again. They loved Grace’s performance. They learned from her and were impressed with what she did. They look at Grace differently now and probably value her more. Friends, family, neighbors showed up to support me and Jeff too. As I sit here on a Friday night, with a glass of wine, while Jeff makes our weekly homemade pizza and we are discussing Grace’s PATH, I don’t know if I will take down the PATH as a recognition that we did it or if I will keep it up as a reminder that it is ongoing. What I thought was an end to itself, actually created the spark for many opportunities, discovery, and relationships. Either way, Grace is on her path, connecting with people who share her interests. Figuring out what motivates her, has Grace desiring to go out and contribute to various projects, as well as volunteering at museums. A PATH is not without pitfalls and obstacles. We have a way to go, before Grace can volunteer at Cincinnati Museum Center or The Harriet Beecher Stowe House on her own. However, people who make those decisions are flexible and desirous of having Grace be successful in these roles. We are so fortunate. We are on a path with Grace and with it we are learning so much about building community and growing our relationships, about Cincinnati, strong women, and Grace, herself. <a role="presentation" class=" image-slide-anchor content-fit " > <a role="presentation" class=" image-slide-anchor content-fit " > <a role="presentation" class=" image-slide-anchor content-fit " > <a role="presentation" class=" image-slide-anchor content-fit " > <a role="presentation" class=" image-slide-anchor content-fit " > <a role="presentation" class=" image-slide-anchor content-fit " > <a role="presentation" class=" image-slide-anchor content-fit " > <a role="presentation" class=" image-slide-anchor content-fit " > <a role="presentation" class=" image-slide-anchor content-fit " >
Building the Muscle for Community | with Ashley Hart
TRANSCRIPT:Ashley: My name is Ashley Hart and our family did the growing Christmas tree in Goshen project.Katie: Alright so you worked on getting to know your neighbors last year through this project? And talk me through that year, what did it look like, what did it take for you guys to put all that together?Ashley: Well it started off with me getting really excited about creating something new. So I came up with a list to my mentor of all the fun ideas I had. Then evaluating how those ideas matched with the community that we lived in and what would be a gift to them and something that we could make memories together with them. So we kind of spent time connecting with neighbors in a different way than we had before. So we might go on a walk and stop over and say good evening to our neighbor or call them over and invite them over for dessert or whatever. And that kind of got the relationship frequency enough that we were able to have more conversations.Katie: Yeah, and were you bringing the idea of this Christmas tree project to them right away or how did you start on that path to get to that project idea?Ashley: So I think one of the things that I realized for myself and took that to the way I was connecting with our neighbors was that I in my own life wasn’t prepared for a big ask and so I didn’t want to throw a big ask at someone else. Really I was still putting feelers out to see if the idea that we had could even happen. So our neighbor happened to be a landscaper, so I didn’t even know if he would plant Christmas trees in December or not, or if that was like not going to work. If the trees were going to die or the ground would be too frozen or whatever.Katie: Because you guys did not have Christmas trees on your property when you started this?Ashley: Correct.Katie: But you had how many acres?Ashley: Eleven acres.Katie: Eleven acres and what are you going to do with it, how are you going to make that an asset to the community?Ashley: Right, and we had always kind of had a vision even on our wedding day we invited people to our property and invited people to spend time there. We wanted it to be a hospitable place but I don’t think we had the tools and the permission that we were given to make it kind of an official thing to start inviting people and doing something unique for the community.Katie: So it took some permission seeking?Ashley: I think so, which is weird, but yeah. I think someone saying here’s some support and here’s some encouragement and start dreaming. And I was desperate for the idea to be dreaming about something other than being concerned about what’s going on in our day to day experience.Katie: Right what was your main concern at that point, what were you worrying about?Ashley: I think I was really focused on ensuring that our daughter would be prepared to engage in her community and the way that I thought I was going about that was through therapy and appointments and things like that because that required so much energy I just didn’t think I had anymore energy to start something new. Katie: So you were trying to pave the way for your daughter to be part of the community some day, but you weren’t really sure about how to go about it. And meanwhile you had other day to day appointments and things that you had to be doing that were taking up time, energy and effort and that that permission that you go to do something off the scope of the therapy list.Ashley: Oh yeah it was like it was such a gift. Yeah it was just you know you get stuck in the grind of doing what’s best and the idea to imagine creating something that intrinsically you already know what is good for you, and what is good for your family and what is good for the community. And just someone saying ‘Go for it’ it’s really.. I’ve talked about that you’re getting to lift your eyes off a problem or what is perceived as a problem and getting to lift your eyes to bringing beauty into your world and your community.Katie: Yes, so before you started this, was it a year long project, about?Ashley: Yeah.Katie: Ten months, year long project, before you started the year long project to plant Christmas trees in your yard and invite your neighbors to, can you explain actually a little bit more about what that Christmas tree project was in the end?Ashley: Yeah, so the goal was, we started the project in July, and because of the event, our event was in December. So we had to kind of move quickly once we decided what we were doing but the idea was to invite families in the community, so because it’s a rural community that’s a wide area, but invite community members to come and to plant a CHristmas tree on our land. And we wanted it to be a healing experience to everyone who came so we talked through what’s healing for community and individuals. So we brought the five senses into the experience. So we had art, lighting, lumineers, paths through the fields and Christmas music anda baker came and baked Christmas cookies that’s from Goshen and hot cocoa and a bonfire. So we tried to make it as memory making as we could by sealing in those five senses and then families are invited to come back each year and they can either take their Christmas tree if it’s tall enough for them or they can just check on it and take a picture with their family. So that’s been really fun to see families bewildered in the generosity. Families would call us and say, “ok so what are the rules around this?” or like ‘well how do we sign, and ensure that this is ours.” And so they’ve just been really surprised by the generosity.Katie: They also are seeking permission.Ashley: Yeah.Katie: To just show up and have a Christmas tree party?Ashley: Right. Right.Katie: Yeah it kind of shows that we’ve lost a little bit of our muscle for community building. We don’t really know what to do in the face of something as ordinary and simply beautiful as this, it’s kind of like there’s a catch. Where’s the marketing here?Ashley: Right, exactly and we have a friend here at Starfire mention that really we’re just returning to our roots as rural people. Who used to sit on one another’s porches and play music and eat together, so we talked about that that evening that we want more of that. And we really got a sense from our neighbors that they did too. So people would come by and talk to me about it like, “Oh I have this idea or I have that idea.” So we’re hoping that fosters more and more of that. Katie: Did many people know your family who came to the event? How did you make connections and make that neighborliness happen?Ashley: So it was funny because several days before the event we had no one signed up for the event.Katie: Seven days before?Ashley: Several, several so like three or four days before. We had like signs up, we had advertised.Katie: So really quickly describe your neighborhood real quick because when you say you have signs and things up it’s at like the one library and maybe like…Ashley: One coffee shop.Katie: Yeah.Ashley: There’s one coffee shop, there’s like two fast food restaurants or three and two gas stations and a library. Otherwise it’s a very rural community. So we had posted things on Facebook, on the Goshen Facebook community page but then we had also put it in a coffee shop. So we really had no idea how many trees we needed so we picked thirty, I’m not sure why but it was crazy because somebody called like three or four days before and was like I know it’s really late but is there anyway our family could sign up? And I was like yeah we’ve got some room.Katie: You hang up and were like woo-hoo!Ashley: Yes totally, like we got one and her friend wanted to sign up too so that made two families and what we didn’t know which I think is really important is having people invested in the process, so our neighbor Dan brough him and everyone he knew to that event. He was excited about it because he had done so much in giving advice and shopping around for trees and going to get thte trees, that he was invested enough to want it to be a good event and want his people to come and experience it.Katie: And is this the landscaper you had mentioned? So you had a neighbor, I mean you have eleven acres how many acres are around you?Ashley: We have one to our right and one to our left then we have one across the street, so yeah. Not a lot.Katie: So you have three neighbors in the vicinity of you and neighbor Dan was one of them. What a gem.Ashley: I know he is a gem.Katie: How did you meet him? Did you already know him?Ashley: Yeah, he has been friends with my husband’s parents who live right next door also. So he’s been a friend of their families for a while and you know in rural communities if there’s something wrong everyone shows up. But otherwise you kind of naturally keep to yourself and sometimes you might stop over and say hi but this just was really nice because we got to spend more time together and got to use one another’s gifts in a way that brought people together so that was great.Katie: Yeah. So this was not the first time that you’ve been part of a community in an intentional way. This experience that you had in your neighborhood with your family was sort of precluded by your own youth living in intentional community being part of living with a family, so you’ve tried community in various forms?Ashley: Yeah it’s always been important to me.Katie: Can you talk more about that?Ashley: I think I’ve always experienced more joy when I’m doing life with other people and yet when you’re doing life with more people it can be complicated too. So that’s just being with other people. Katie: That’s a good thing to know going into it.Ashley: Yeah I think so.Katie: You had seen some of the pitfalls of it but you had also lived some of the joys of it and knew I want this for my family now too?Ashley: Right and you know even having your own family that’s having a small community. So yeah I’ve experienced it in multiple different settings and really just treasured the gift of letting people be beyond the veils of their front doors and back doors and getting to spend real life with one another.Katie: Yeah so you’ve sought it out in that way. You’ve been seeking it. How were those experiences that you’ve had in the past in the intentional community that you have been different from the one that you experienced when you reached out to your neighbors and kind of had this project type experience where you’re connecting over a shared idea, a creation versus like all living together in the same house?Ashley: Yeah, well it’s nice because you have a goal and it’s accomplishable and you’re kind of bringing everyone in so that’s different I would say. Then just all doing life together. You have an event and then it’s done.Katie: Yeah, you’ve all achieved something together and like you said earlier and it’s a way for everyone to use their specific gifts like you had the baker that came, neighbor Dan brought the trees, there were other people who probably set up the decorates and had ideas around where to plant the trees. Even the people who showed up that day, their gifts were their presence and getting enthusiastic about what’s going on. And everybody can kind of have a role there and doing something that’s kind of out of the ordinary.Ashley: Very out of the ordinary for Goshen. Yeah we had one experience where it was like an art installation where we zig-zagged rope through the trees and everyone brought a little lantern out, different sizes of light lite lanterns so by the end they had created this beautiful art piece and we talked about you’ve all brought your gifts here tonight, just being together and this is just a display of what could be as we spend time together and do life together.Katie: Yeah I love that imagery. So we’re going to segue. To the time you decided to move away from this place. The moment you made the decision after all of this goodness had been created to say you know what we’re going to try a new neighborhood. Take me to some of the decision making and what was that like? Was it difficult? Where you anxious about leaving? Did you feel like what if we regret this because we’ve made all these connections. What was your motive there?Ashley: Sure, yeah well I think one important thing to talk about as far as the project goes is we were in the midst of deciding while we were doing the project. So I asked my mentor should we do it in Goshen? Should we do it where we think we’re going to go? And we kind of ended up deciding to do it now and do it where you are and I think there’s a lot of lessons in that.We don’t have to wait until we think everything is right to start building community and to start creating spaces of belonging for our neighbors and memory making moments for each other those are always good and always can be healing, so I’m glad we didn’t wait. Katie: And you also have a two year old, three year old?Ashley: Three year old now.Katie: A three year old. So as parents too it’s like well I’m going to wait until my kid gets older, things are less hectic. So doing it in the midst of all of it and what’s the value in that that you found at the end even when you guys were packing up your bags and deciding to leave?Ashley: Well I think the biggest take away for us was that we built the muscle to like we now have the muscle to build community. And I”m just naturally looking for it all the time going like ‘oh what could we do here?’ So we’ve done a couple of things in our new neighborhood not for any project per say but because we now have the muscle and we want community where we are. Katie: Yeah tell me what were some of the first few things that you did when you moved to the new neighborhood that maybe you didn’t do when you moved to your Goshen neighborhood?Ashley: Yeah, so our new neighborhood before we had actually bought the house but we were pretty sure that was where we were headed it was trick-or-treat so we were like ok how often are you invited to every single person’s house at the same time. Like this, we can’t miss this.Katie: Yeah that’s a good point.Ashley: Yeah like never.Katie: Yes please come knock on our door and we’ll give you things.Ashley: So we went to that neighborhood that night, just to introduce ourselves and said we are probably going to be living right there and we’re eager to connect with you guys.Katie: Wow so even before you put money down on the house, even before you closed on the house?Ashley: Yes, yes.Katie: Wow, ok.Ashley: Yeah, so we were excited about building community there and we really wanted to take what we were learning and not just leave it in Goshen, but bring it along with us for all of us. So that’s one thing that we did, that was in late October and then in February we made jars of hot cocoa and put our picture on them and our address and we said we’re your new neighbors and our daughter was in a little red wagon and just saying hello and that inspired lots of conversations and people coming to our house and bringing us stuff. So that kind of got the wheels spinning in the neighborhood I think.Katie: Were you writing down names after each one?Ashley: Yes, my husband actually was really intent too which was a fun dynamic to see him to start getting invested in the idea of community building because he didn’t grow up building community like I did as much.Katie: And he was the note taker he was the one, yeah?Ashley: Yeah, wanting to know his neighbors.Katie: So I think what you just touched on which is really important is we think sometimes we need to be the ones welcomed in and instead you guys were the welcomers to your new neighborhood to your new neighbors to say hey we’re here and we want to know you. So taking the first step doesn’t always have to come from the other person.Ashley: Right, and I think that’s kind of fun for the neighbors to be like ‘wait she flipped the switch, like what just happened there?’ Yeah, and it was totally fun for us so we said we would do it again in a heartbeat because we got to go in people’s houses and visit and people came in our house, it was nice. Katie: Yeah when you left your neighborhood behind did you have any lessons that you were taken from what you learned over that year with the Christmas tree project that you were like we’re going to do it differently this time. We tried it that way and now let’s try it this way. Was there anything that stood out where you’re like…Ashley: Lessons learned?Katie: Yeah.Ashley: Yeah, I think the big lesson, my big takeaway from growing Christmas trees in Goshen was with a new event, a new project no one knows what to expect so it’s really hard to get people invested unless they’re a part of the creation of the idea, and so we only had a couple people that were involved with the creation of the idea. And so that ends up meaning that you’re doing a lot of the creation and administration of the event, so my take away in the future is that I want our neighbors there with us like what should we do with our community what would be something that our community needs or wants that would be fun for everybody. So bringing everyone into the decision making piece..Katie: From the beginning?Ashley: From the beginning. Now we’re trying to back track and go like maybe we do a Christmas planning in July so we get everybody to come together to start working towards the goal for the event.Katie: Yeah and it’s what you said before neighbor Dan was invested from the beginning and he was somebody who brought a lot of people with him, so the people who come it’s hard to sometimes invite the whole neighborhood if it’s just your family. But the more people who come, the more networks they have and everybody's networks kind of show up too. But also you’re saying just the excitement piece and getting it all together, it’s not all on you as a family to plan it all and dream it all up and there’s more shared ownership.Ashley: Right which means there’s more presence at the event too. There’s ten families that are excited about it and they’re bringing all their gifts and networks there. So that’s a big help, so I think that that would be if I was doing that again when we tried to do that but I think we’re all just learning as we go and I think we did it by inviting a group of people, we weren't good at explaining this is what we’re thinking about we just said come plan with us we’re going to do an event and they were like i have other things going on so..Katie: Yeah, sounds like work.Ashley: Yeah, exactly, so eventually they came to the event and they’re definitely a part of our community but not bringing people in early to help ideate and create it.Katie: What about just in terms of knowing neighbors and interacting with them differently are their things that you do as part of your lifestyle now that maybe you didn’t do you know in your former neighborhood that know you can kind of.. I guess I’m asking that because you can reinvent yourself when you move somewhere, you can be a new person in a way. So there’s a benefit in showing up as this new neighbor and being like ok this is the type of neighbor I want to be now, I might not have been that in my neighborhood prior but now I can show up and nobody knows me and I can start new right?Ashley: Yeah I think the big thing that we’ve done differently is just at the outset let people know that we’re interested in being together. So a lot of people I’ve learned that in suburban neighborhoods like to play and do outdoor life in their backyard with their privacy fence and so we’ve spent a lot of time in our driveway and in the front yard and going for walks and interacting with people that way so some of it is just relearning how to be in a new environment too. Katie: Yeah I love that so you’re spending time in the front yard so that when people get home from work and they pull in their driveway you can be like ‘hey’!Ashley: Right.Katie: Privacy, there’s a value of privacy that we have as Americans.Ashley: For sure.Katie: But we aren’t necessarily happy in our private lives we’d rather spend it with other people we just don’t know what that looks like any more. So do you think that you have a different mindset than you started this with and in what way?Ashley: I definitely, I have a huge different mindset yeah. In so many different ways I mean it’s like so many different layers, my mindset during community building I’m still super excited about community building in our new neighborhood and I’m also so grateful that i now see people who are neighbors with their gifts. Like that I think is different than before which is surprising to me because I thought that I saw people that way always but I think you know as we were getting to know people in our new neighborhood we were like ‘oh my gosh this is amazing we have this person across the street that does this or that’s interested in that’ and before I think we were just trying to do our own thing and then relating to people asit happened where as now we’re much more intentional about making it happen that we connect with those people and creating spaces where we can do that together.Katie: So seeing those gifts as an avenue for ‘this is how we can connect with them, wow’ let’s learn from that person or is that the difference?Ashley: Yeah and I think even outside of our neighborhood I’m just learning how other people we’re connected with have their gifts and who they are, connect with us and vice versa.Katie: Like the common?Ashley: Commonality, yeah the things we share and care about. For example, my uncle is a musician and piano tuner and everytime he and my daughter get together they just love doing music together. And so I asked can we do this quarterly even though you live two hours away, can we like break bread together and do music together and so we’ve been doing that for two and a half years since we started getting involved here. So I think just being more intentional and making it happen putting it on the calendar and dreaming in a different way.Katie: Yeah and you brought up your daughter and I think I want to bring it back to this idea that in the beginning you were like I need to prepare her to be part of the community. In what ways do you see her now as a part of the community and was there preparation in that or did it sort of did she, did she just get immersed in this way through gifts?Ashley: Yeah I think I’ve been really intentional about not putting her up on a stage to be engaged with but instead just being a part of our family and people engaging with us and with her. If that makes sense. Katie: Was that a shift for you to think of it that way?Ashley: I think possibly yeah I think I had an intrinsic sense of her belonging and her belonging in her community but I think I had to learn what things I want to bring our family around and to fuel and what things I want to invest in with our family, if that makes sense.Katie: Time-wise even?Ashley: Yeah.Katie: Where you’re spending your time?Ashley: Yeah, we did study with our congregation with families and the number one asset the number one deficit that they had was time. That’s your number one thing, right, you have to spend it where it counts and so for us we really decided that we look like being together as a family and being with our extended family and being with our neighbors.Katie: Yeah. I guess that part of it in the beginning you were looking at therapy and things to get her ready for people and now you’re just like you’re doing those things still.Ashley: Yeah, and I guess my answer is I always had a sense intrinsically that she belonged no matter what and I think that having conversations with my mentor affirmed my intrinsic sense of her belonging, does that make sense?Katie: Yes, do you think that hearing that from somebody who is in the disability field to say something as ordinary as like go get to know your neighbors, was that.. Because it’s playing into your instincts as a parent that you already know and it seems like most places aren’t playing into those instincts they’re telling you ‘we’re experts and this is what we know that you don’t’. And for someone to give you something that you already know as a way of life, you have taken that and it’s caught on so quickly and so rapidly.So I guess that was kind of part of my question was like in the beginning you were waiting maybe on ‘well we’ve got to get these things done, we’ve got to line this stuff up and then maybe we’ll find community or maybe there will be a way to be connected to people, maybe there will be a better time’ and then hearing from somebody who's in this role to say no it’s now, that you do it the best time is now.Ashley: Yeah, I think it was helpful that my mentor also was involved with their neighborhood, like they’re doing it, I’ve been involved in community and i know the fruits of it. It’s helpful to be reminded that it’s good and my eyes were just stuck on ensuring that I did everything that I thought I needed to do to support her. It was kind of like with blinders on just missing like the biggest piece of providing her abundant community now and making those connections.Katie: Well what I love about this too is that it’s a metaphor for most people’s lives, whatever that thing is that you’re trying to do the best at, do right at is preventing you from just living and usually that is all you need to be doing. But we’re going, we’re trying to succeed or we’re trying to reach these different heights that have these requirements and steps along the way.Ashley: And then we reach those and there’s more. Yeah, we’re on like the treadmill of the institution and instead of getting invited out of that and saying ok I’m also going to look for something outside of those boundaries to build my life on is huge.Katie: So what is at stake for you for your family if you don’t make an effort then to get off the treadmill? If you don’t make this effort to connect to the people around you?Ashley: My daughter being isolated as she gets older and I mean for a girl who is in my bones to know the joy of community that’s just not an option. So it makes me really sad to think of her facing isolation when it’s not in her bones either.Katie: Were you getting a glimpse of that already? I mean she’s really young, were you already feeling like that was part of your lives or becoming part of your lives?Ashley: Well interestingly I was going to a lot of different community things, events and stuff and we were the only ones there who had a child with a disability and I was like I know that’s that is not always the case but in the unique places that I was that was the case. So one I thought it was important that I was there and two I just hate that that’s the culture that that’s set out for families for anyone that's marginalized, right?Katie: The culture being we don’t go to ordinary places in the community.Ashley: Yeah being like, well the culture being you’re welcome if you are a certain way.Katie: Yes so the culture speaks more towards the families of and unwelcoming sense to say like there’s a group for that and it’s over there.Ashley: Yeah I think one thing was we belong and we’re going and she was really young so I mean when you go to a six month old story time it’s fine. Difference is more evident as kids age but I think so kids get older it probably would be more challenging to face that head on for the first time without having some understanding and foundation in kind of what do we believe about this what do we believe is true.Katie: As you grow into connections in your neighborhood do you think you’re kind of heading off that uncomfortable feeling in the community when you, as your daughter does get older?Ashley: Yeah it’s interesting because we have two or three intervention specialists in our neighborhood. So you can always tell when people have a predisposed idea and so you know you just meet those in conversation and bring to the conversations what you believe in small snippets over time. But yeah I think we have work to do and I think our daughter will lead the way in that with our support. So I think the biggest thing I think maybe it was a quote I read from Starfire, you guys were quoting someone that talked about when you toddle, have people who have known you since you’ve toddled. Do you remember that quote?Katie: David Pitonyak, “Who holds your story?”Ashley: They’ll be like that’s.. You know we know her, yeah?Katie: Yes. Ending on a piece of hope what is one hope that you have for your family in the next ten years that has to do with your community building work?Ashley: I hope that we establish rhythms with our neighbors that go on year after year and that we know one another’s stories. And when my neighbor is sick I know what to make him because I know what he likes, you know, just the good life of community. And if my daughter is out and she isn’t supposed to be out then they know me and they know where to bring her, or that she gets invited to the pool party across the street. Just the basic stuff, nothing extravagant but maybe extraordinary in this time, yeah. Katie: Yeah that is extraordinary, is there anything else you would want to say?Ashley: I don’t think so.Katie: Ok I love that, thank you.
et tu, Vanier?
In June of 2019, I profiled Jean Vanier and his life of supporting people with disabilities in intentional communities, L’Arche.This weekend, multiple news outlets including the New York Times, Washington Post, the BBC, and Catholic Telegraph report, “Jean Vanier, founder of the ecumenical L’Arche communities that provide group homes and spiritual support for people with intellectual disabilities, used his status to have "manipulative" sexual relationships with at least six women, concludes an internal investigation commissioned by the organization.” The report is explicit that the inquiry did not find evidence of sexual abuse of people with developmental disabilities.Starfire, like many organizations and groups who stand in support of people with developmental disabilities and their families, remain saddened by this news. As an organization that has shared Vanier’s work, we must now also reckon this complex history.Et tu, Vanier?What it reminds us and teaches us is a healthy skepticism of figurehead leaders, particularly of older men who seem to hold the sacred wisdom. To be aware of the allure of those who seem to know the answer to a complex, difficult question of “where do we belong?” and to resist elevating humans, systems, or programs towards sainthood, idolatry, and worship.Instead, this unfortunate news reminds us that it is once again, the average, everyday work of people, families and communities that make a community whole. And, as an organization, we challenge ourselves to de-centralize Starfire as the authority, and instead, continue to work to center families’ voices, lived experiences and work at the forefront of this movement.
In Support of Dissent
"The culture of power-over people with developmental disabilities is stubborn. Admonitions to respect the right to choice and dignity of risk are seldom sufficient to relax its grip. The dominant presumption that something about a person demands fixing or treatment hijacks thoughtful consideration of a whole person’s purposes, will and preference and empowers professional judgments about health and safety. The struggle to create the conditions to intentionally exercise power-with people continually challenges our practice.”Recently, seven of our colleagues in inclusion from across the U.S. (Carol Blessing, Marcie Brost, Beth Gallagher, Kirk Hinkleman, Peter Leidy, Beth Mount & John O’Brien) published DISSENT FROM CONSENSUS: A Response to the Person-Centered Planning & Practice Interim Report. The Practice Interim Report in question is a piece developed by a consulting company commission by the US Department of Health & Human Services to come to a consensus on defining person-centered planning for systems.Our colleagues write passionately about the danger in “consensus” from human service professional and government entities around a practice and experience that has given birth to a variety of dreams, imagination, clarifying identities, competencies, and giftedness, and emerged a vision of newness for people with developmental disabilities, their families, and our communities. Starfire fully supports the Dissent opinion and rejects any effort to standardize, mechanize or otherwise systematize, a practice which has given life to numerous people with developmental disabilities, their families, and our communities.Our colleagues’ writing reads to us, as a list of what people with disabilities and their families and the people who care about them are up against - in one concise and beautiful sentiment. They make a case for the wisdom and usefulness in “chaotic self-organizing” allowing people themselves to design, experiment, plan, and dream alongside the support from family members, service providers and community members to bring to life the possibilities set forth. It is, at the heart, what person-centered planning has been designed for. Person-centered planning has had the most profound impact on Starfire’s work, radically shifting our understanding of our role in people’s lives and setting us in motion phase out of legacy and congregated models of group support.Allowing people to come to get to dream, ideate, and set action steps together for what a good life can look like and can mean, they write, “person-centered planning as one disruptive element in a purposeful process of organizational and social change.” This has been my experience in 100+ person centered plans that I have graphically facilitated and helped to host since 2010, representing 100+ unique people, stories, their families, and their dreams of what an inclusive, good life could and might look like with a little luck and some good work. <figure class=" sqs-block-image-figure intrinsic " > Admittedly, there were suggestions made in the 100+ during person-centered plans over the past decade that I have been in that I simply didn’t record. Once, a suggestion that Beau would be happy in a nursing home (at age 23) because they had lots of activities and he could be kept busy. We were able to shift the conversation to what kind of business was important to Beau, and the conversation led to a dreaming around teaching kids to swim, volunteering at a local school and the idea of institutionalization fell to the wayside. Having something important to do was at the heart of the suggestion, and this uncomfortable pause with markers in hand, allowed the conversation space to breathe. And it stopped “nursing home” from being Beau’s North Star.Another time, a debate about scheduled laundry days was a part of a vision for a good life for JP. We were able to navigate the conversation to what a good home life looked like to JP and steered the conversation into autonomy around his days with his group home staff, setting up a schedule that worked for him and wasn’t regimented on rotating staff schedules that conflicted with his love of WWE Monday night raw events.The Consensus report lists competencies and qualities required of a good facilitator, and many of which Starfire would agree with. However, an exhaustive list wouldn’t cover the examples above – how to navigate a conversation back to the goodness and intentions of inclusion and assuming a facilitator holds the same values of inclusion. How to hold space and sit silently while a “bad” idea is proposed, how to assist the group to continue to remember the good things in life are not often found in services, strict schedules, congregated programs, disability-centric opportunities. While the competencies as a whole are a good list, it doesn’t encompass the intangible skills of allowing a conversation to flow and capturing the big idea, the good life idea, and sift through filler that is often not in the best interest of the focus person, not truly inclusive, and neither positive nor possible. In 2010, Starfire began to fully invest in learning about person-centered planning, and about PATH planning specifically. As I’ve written before, I was admittedly, skeptical. The idea of putting down to paper a vision for the future seemed ludicrous. We practiced mini-PATHs for each other, and colleagues walked away hanging their posters above their cubicles. I recycled mine. From Things Change and That’s the Way it Is Part 1: “Bridget learned about PATHs, and lead a staff training on it to bring us along…We did very small personal mini-PATH’s (the North Star conversation only on speed.) I remember my North Star included buying a house, getting married, learning about bee keeping, starting a garden in my backyard, writing, and a few others that I can’t remember. I was skeptical about the whole process, not buying into the hippie shit of drawing what you’re feeling and dreaming out loud, and all the other hokey stuff I thought I’d left behind from when I planned retreats. At some point, I became embittered by it. We gathered as a large group again, shared our North Stars and at the end of the afternoon, everyone rolled theirs up and took it to their desk. “I’m going to keep this” someone said. “I’d love to hang this above my desk as a reminder of what I could be. I’m embarrassed and ashamed now to say that I felt very differently. I immediately crumpled it up and recycled it. The idea of “writing something down and seeing it as an image makes it more probable to happen” was bullshit. I was not an immediate believer in the process and wasn’t buying that this was something that would really change people’s lives. And who cares about drawing pictures? Was I ever going to really learn to keep bees? Buying a house? When I’d just graduated in 2007 with large amount of student loan debt and was paying out of pocket for graduate school?” And yet, I did do all those things, which I later blogged about here, and here, and here. And many people whose PATHs I was a part of have also gone on to accomplish their goals, bring to life their North Stars, on their own timeliness outside the bounds of a service system which mandates outcome reports, yearly MyPlans, skills assessments, billable hours, and the like. "When we think of person centered planning, we think of specific faces, names and stories. As we read it, the Interim Report aims to meet health system demands that position person centered planning as an instrument of that system, bounding a universally defined process in meetings, specifying competencies to facilitate plans, and outlining system management processes to assure compliance in implementation."Likewise, when I think of person-centered planning, I think of 100+ PATHS. Conversations that were joyful, laughter filled remembering best moments, childhood stories, inside jokes and time spent in communion, tough and difficult (I want to move out/I want her to move out), conversations that led to new identities – docent, brewer, fashionistas. Starfire will continue to incorporate person-centered planning into all that we do. Not because it’s regulated and or perhaps required, but because its role in our work continues to hold importance and power for people with disabilities, their families, and our communities. And because we’ve seen, what happens when we invest fully in what is positive and possible. <a tabindex="0" role="button" class="previous" aria-label="Previous Slide" > <a tabindex="0" role="button" class="next" aria-label="Next Slide" >
What We Don't Do as a Non-Profit: Or Why Traditional "Volunteer" Programs Have Only Driven Us Further Apart
Thanks for your interest in Starfire! We are always grateful when ordinary citizens such as yourself wants to find a meaningful way to get involved. First, we’re glad you found us. It goes to show that citizens realize the important role they can play in the life of a person with a developmental disability, and their own ability to change the culture that excludes them.
From Caregiving to Connecting | with Carole Workman and Katie Anderson
EPISODE TRANSCRIPT:1:11 - 2:31Carole: My name is Carole and I’m passionate about Japanese fashion and hopefully bringing it into community.Katie Anderson: My name is Katie, I am passionately working at this point to build community around fashion with Carole.Katie B: So fashion but particularly Japanese fashion?Carole: Mhm.Katie B: Tell me what type of Japanese fashion?Carole: It’s Lolita. Lolita is inspired by the victorian European style era. Where they, you know like the ladies wear the poofy dresses, the over the top here, the styles they wear a lot of accessories jewelry. They wear petticoats under the dresses. It’s kind of like that.2:32 - 3:55Katie B: Yeah and this was brought to Japan..Carole: This was brought to Japan at the time where the women were supposed to look stereotypical, they had certain standard how they wanted the women to look but the women didn’t want to look like that anymore. They wanted to be themselves so they decided that they wanted to keep it and it was the opposite of what the Japan standard was.Katie B: So in some ways, this Japanese fashion Lolita is the anti-Japanese fashion?Carole: Mhm.Katie B: Ok, the Japanese fashion for rebels, rebel women?Carole: Yeah.Katie B: So tell me how you guys know each other, Katie how do you know Carole?Katie A: Carole and I are connected through Starfire as a community building partnership, so we’ve been working together for probably a year and a half now.Carole: Yeah.Katie B: What does that time look like?Carole: We get together every Wednesday.Katie A: Wednesday mornings.Carole: Wednesday mornings. Until noon and we go to coffee shops and we sit down a think about what is our next step of what we want to do in the community, with Lolita or something that has to do with my interests.3:56 - 5:56Katie B: So you guys get together around something that you’re interested in and what was that in the beginning what did that look like in the beginning?Carole: Well it was hard at first because I’m interested in art and so we tried to get together with some artists but that didn’t pan out so well, apparently artists like to be very.. Well either they’re very busy or they’re very shy to do anything with anybody else. They like to do their own thing.Katie B: More like introverts?Carole: Yeah.Katie B: I guess the perception of artists is that they don’t necessarily want to hang out with each other but maybe in just the way that they hang out is in smaller groups and more intimate settings. So have you found people just that one on one connection to go and do art?Carole: When I visit Rhoda, I go over to her house and she has this like garage, she has her art studio in there and I go and we do art in there and we have a meal too. She gives me advice on how to do.. What she thinks I should do with my art, like add a color or a hint of a design or something.Katie B: Tell me who Rahda is again, just kind of explain who she is.Carole: Rahda is awesome. How do I explain her?Katie A: What kind of art does she do?Carole: She makes a lot of mandalas. Her artwork is all around the city.Katie A: You were recently involved with a project she did.Carole: Oh, we made prayer flags and she had them hung up at the Music Hall.Katie B: So drilling back in the time that you’re spending together is around your interests and that fit in with your interest in being connected to someone in the art world but then tell me how the fashion piece started to come into play.5:57 - 8:02Carole: I had interest in the fashion since 2014 and I’ve always worn like little bows and things like that here and there. But I’ve really wanted to actually try it so I bought one of the little dress pieces and..Katie B: This was just on your own, you just kind of went online and found what you wanted?Carole: Yeah I went online and I also had help from mom too. Yeah she helps make some of my stuff sometimes and I mean I help with the sewing too. I’ve always watched my mom sew and she taught me some things.Katie B: Yeah. When you guys first started what were your first initial attempts, what did that look like?Katie A: Just from my conversations with Carole, and you can tell me if I’m wrong Carole, you enjoyed art but you kind of felt like that had run its course as far as creating a project. So our plan together would be to keep up those connections you had and start fresh with a new idea. Which we started doing cosplay, so we thought we’d meet some people around cosplay.Carole: Yeah, that didn’t really work out so well. Nobody really showed up.Katie B: At the cosplay meetings?Carole: Yeah, after one meeting we had like a few people but then after that nobody else started coming so it kind of stopped.Katie B: How did that feel when something you tried didn’t work out?Carole: I mean it hurts because you know you put your heart into it and passion and you take your time on making like these little arts and crafts that we had.Katie B: What were the arts and crafts?Katie A: The idea was to have like when someone passed by they could just kind of join in and grab it real fast and make something without feeling like they had to be a major cosplayer.Katie B: Were there things that you learned from that and you were like ok we got to do something different?Carole: After that we just kind of figured well this is not going so well so..8:03 - 11:12Katie A: Then I think we just had some conversations around ok that’s not working, what else are you interested in? So it was just some more research and we had talked a lot about fashion.Carole: Yeah.Katie A: And we went to Facebook.Katie B: Oh yes. The Facebook.Carole: Then we went to Facebook.Katie B: What did you find there? What was..Carole: There were like two Loltia groups for Ohio.Katie A: And that was something that you were involved in separately from me.Carole: Yeah but I wasn’t like active, like I am now. Katie A: Yeah. Katie B: So you had already been a part of those groups on Facebook but not really actively posting on stuff. So you find them and you are like ok and you guys discover them together like hey this is something we could look into more and really at that point it’s just a random group of people that you don’t know in person, you just know they all like the same thing. How do you start to come up with an idea of how to meet them in person? Because the goal isn’t to stay digital it’s to have some sense of social connection that’s live.Carole: Well somebody had asked the group like if I set up a meeting, meet up in Cincinnati what would you want? So it was kind of set up already for us.Katie A: Yeah there was a list of like thirty five things that people wanted, so we were like this is an opportunity, let’s choose one and let’s plan it.Carole: Yeah they wanted tea events, they wanted crafting events, they wanted it all. So we decided ok let’s have a tea event and also let’s have a crafting event at the tea event too. The first time we didn’t do any crafting but we had a few people come out to the tea event at Essention?Katie A: Yeah, Essention Tea.Carole: Oh one of the Lolita’s we met at the cafe that we always go to, her name is Breanna.Katie B: And you met her how?Carole: She came up to me because I was wearing Lolita that day, and we were working on finding like what to do with the Lolitas. And she was like, “Excuse me, are you wearing Lolita, or are you a Lolita? And I was like, “Yes.” And she was like, “Oh my gosh.”Katie B: So she just randomly saw you sitting at the coffee shop and saw this woman over there, wearing this fashion that if I saw it I wouldn’t have a clue.. She obviously did and she came up and said, “Hey” she wanted to talk to you.Carole: Yeah. And she’s like “I wear Lolita too.” And she was very happy. And I was like huh, somebody else knows about Lolita besides me here? And she was like “I don’t really see anybody wearing it here but I saw you and I had to come rush over and get your number and then we started talking.Katie B: Ok, so the spark happened there.11:13 - 16:18Katie B: Where you there when that happened Katie?Katie A: I was there and it was like I didn’t exist, it was awesome. They just went into their Lolita language and they..Katie B: What is Lolita language?Carole: We talk about like petticoats and wrist cuffs.Katie B: So then you have Breanna, and you have a Facebook group and you start with that premise of we’re going to do this because this is what people in the Facebook group are saying they want, in Cincinnati, and when you got to the tea party, when you got to that day tell me the steps leading up, what made it possible? What made it successful and what the day of like how did that feel when you got there?Carole: We made a Facebook event and we invited all of the Lolita’s in the group and I think by the time like a day before, it was like five people who said they could come. It only ended up being me, Katie, Breanna, and two other girls but it was a big deal because people actually showed up.Katie B: Yes, people you invited came.Carole: Yeah, we were very worried other people wouldn’t be able to come because it was raining that day. It was raining and…Katie B: Oh do Lolita’s not like to get wet?Carole: No if we really want to go we’re going to go, it was just..Katie A: You take an hour putting your dress on you’re not staying at home, right?Carole: Yes, like today I got up at six and I didn’t get completely dressed, like everything together, until like 8. It takes forever to get together. So it started raining and I was like oh I wonder, and it was windy too, and I said oh I hope somebody wearing a petticoat, I hope they brought their umbrellas because it’s raining. But..Katie B: See that was one of the things, everybody showed up and you were..Carole: And we had a group picture and all that.Katie A: I think one of the important things too was, was Breanna like we had already had that initial conversation, one on one, like this would be really cool right to meet up and she had felt that personal connection to her relationship with Carole.Carole: Oh yeah, because we had met before the event too.Katie B: I think that’s really important that you just pointed that out because there’s something about the personal invitation that makes people want to show up more than maybe with your original event, which was a cosplay event, and that was more of a like did you make a flyer for that and just invite people?Carole: We made events, we made the whole nine yards.Katie A: Right, but we hadn’t been able to meet anyone kind of like who you were really really connected with, which just happened and I feel like that’s how relationships are sometimes. And I think that’s part of Breanna’s struggle too is that she wasn’t able to find someone so when she found Carole she was like we are doing this, let’s plan some stuff and let’s find some people. Yeah.Carole: I’ll give you my number, we’ll text. So every now and then before we get new dresses or something we’ll text each other and be like hey it finally came and oh let me see. And then we’ll send a picture of the dress and be like “Oh this would cute with this accessory or this would be cute with this color or something. Katie B: Yeah and you’re pointing out that there’s a connection beyond just the day of the tea event there’s like stuff to talk about and things to text each other for so you have this friendship that formed. Which is awesome, and that couldn’t have been forced, right? Like you had a level of serendipity just being there and showing up in community to make this random connection turn into something like a friendship, there was no formula or path or steps A to B, except for continuing to get out there and try and not giving up after that first disappointment with the cosplay event not working out, right?Carole: Yeah.Katie B: So time and..Katie A: Bravery.Katie B: Bravery.Carole: Because had it not worked out I don’t know what we’d be doing.Katie A: It’s almost easier to say, you know, this didn’t work and let’s just not do it anymore.Katie B: Right, what would you be doing do you think, if you had given up and stopped trying? What would you do instead? What are your other options?Carole: I would have been at home right now, I would have gave all the way up because that’s what I did before when it didn’t work out but I’m happy it worked out this time because I get to get out and meet other people and do new things. Like there’s another event Sunday and they're having a brunch. The same Lolita that came to a couple of our tea events and her mom is doing Lolita now.16:19 - 18:49Katie B: So your first attempt to get something going in Cincinnati is now taken a life of its ownCarole: Yeah and now everybody wants to..Katie B: And now you’re getting invited to those.Carole: Yeah.Katie B: When you think about connecting Carole you know outside of agency settings, day programs, workshops and things like that do you think that is a way of you saying like these aren’t good enough?Carole: I think what I’m trying to say is that they could do better. Like the way they’re doing it now is not helping anyone express themselves, I think. LIke a lot of the ways that most people or the person with a disability doesn’t have a choice. They are pretty much stuck in the box but I think if you give that person a chance to express themselves then you’d be surprised.Katie B: So there’s a limited options based on what the box defines as choice?Carole: They don’t really give us a choice to decide anything. I think they figure because of what they see on the paper is how they should treat us but we’re more than just the paper. We’re human too.Katie B: Yeah, there’s options like going out to eat or going to the movies but getting into what your purpose is in life there isn’t much interest in exploring that.Carole: Yeah, there’s other.. people have other interests besides movie or Youtube.Katie B: Does that happen at day programs? Do you watch Youtube a lot?Carole: Yes, we watch a lot of Youtube. We watch a lot of movies. We play video games or we draw. Not that I have a problem with drawing they have like open art, but I like to be told we’re doing charcoal, we’re doing sketching, and we don’t really do that.18:50 - 20:59Katie B: Yeah, you’re more interested in deepening your skill set and learning more and getting.. being taken seriously when it comes to your art. And Rhoda provides that for you in a sense of what you were saying earlier she critiques your art and says why don’t you add a little color here or there, and you’re learning from here but in the day program setting it might just be something like here’s something to do.Carole: Here’s something to do. Like I don’t mind doing it but I want to learn not just here do this. Like if I go to a program I want to feel like I’m doing something I’m not just here to be babysat.Katie B: So do you feel other people that you know in the day program feel the same way? Because you’re an extremely articulate person when it comes to this topic and I always like having this conversation with you because you put it so well but I wonder if some people you know who may can’t articulate it this way, do they feel similarly? And how is that you know that or don’t?Carole: I feel like I can always tell when someone is frustrated because of how the program is, or they want to do something but no one is listening. They’re trying to tell them but they can’t really tell them, I mean I can tell the staff about what they’re trying to do but programs period don’t really listen to the people there they just feel like you know well we have this client so we have to do this and make money. But people just want to feel like they’re heard, and they’re not heard a lot. And it’s frustrating because when we come to the program we have all these nice things but we aren’t getting to where we are supposed to be getting.Katie B: So it looks like a good program on the outside..Carole: It looks like a good program on the outside but on the inside it’s different.21:00 - 21:44Katie B: Yeah, living it day to day is different, is what you’re saying?Carole: Yeah. It needs to change too because it’s kind of hurtful to the people who go there day to day but they not being listened to and they’re set up in this little box of everybody is on the same level. But everybody is on different levels and they think they should be on one, the staff thinks they should be on one level. And that frustrates people, that frustrates me sometimes.Katie B: Right and then..Carole: And some people can’t say they don’t like it. If I try to stand up for myself or other people they feel like I’m trying to step on their toes. I’m.. no, I’m just trying to tell you how I want to be treated or how I want things to be done so it would make it easier for you it would make it easier for me and everybody else.21:45 - 26:45Katie B: There are people being put into a group who all have varying needs varying interests varying different ways of showing up in the world and what you’re trying to deal with as Carole the woman who loves art and Lolita and fashion and Japanese culture is sort of like plain beige, you know, no options. And on top of that sometimes you’re feeling like you’re not heard and you’re not listened to and the people around you are not heard and are not being listened to and on the side of the staff, their challenge there is really really hard is to say somehow I have to provide a service that makes everyone in this room happy right now. And that makes everyone feel like they have an option or choice and while that’s impossible there are still programs out there who are saying that they do that, right? Do you have empathy for that, like sort of set up for people who are in that situation as a staff person trying to make it work because of course we’re not trying to paint this picture that everyone’s bad?Carole: I feel like.. No, no, no not everybody is bad. I feel like you can do something good intentionally but sometimes it doesn’t show, it doesn’t show up the way you want it to. They feel like they’re doing what they’re supposed to be doing, I do feel for them because like they think they're doing good things but they’re missing some things. And so sometimes you have tell what.. I see what you’re doing, you’re doing a good job but here’s some things that could help you do things better.Katie B: I like that and Katie I want to bring you into this conversation too because I think there’s also a way to do the work that’s being done at Starfire now in a way that can either be you’re listening and you’re hearing and you’re one on one and you’re doing this great work and you’re in the community and there’s also the way of doing it that isn’t great. You could still be one on one but you could be going to a restaurant everyday.Carole: Yeah.Katie B: Or you could be kind of doing stuff that isn’t intentionally driving toward community building experience, right? So Katie what ways are you intentional in this role that you try and save guard from stepping into maybe a status quo type role?Katie A: When I’m thinking about our time together it’s really thinking about Carole as the leader of our time together, so always thinking about planning things around her interest and planning for something that’s going to bring other people into what we’re doing. Like when we talk about the tea or we talk about other events, those things are always going to bring people, other people that are going to connect to Carole into our work together. So it’s not just me and Carole doing things, it’s me and Carole and someone else who is going to build on Carole’s interests and connection..Katie B: Yeah so you, ok so you’re being the bridge? It reminds me of a quote from Janet Lee who is a woman out of Toronto whose life work has been about liberating people with disabilties from segregated settings and building around interests and connections and we’ve learned a lot from Janet Lee. One of the things she says is, she asks the question of people, “When you leave [because at some point Katie you might leave, you might quit Starfire right and Carole you’re nodding your head, like you’ve had a lot of different staff]..”Carole: Yeah I have a lot of different staffs.Katie B: At Starfire, yeah. So that’s an inevitability that we kind of face and we own up to in this work and so what she asks is, “When you leave are you a void [in Carole’s life] because you were her only friend? Or are there more people in your life [Carole now] because [Katie] someone was a bridge?” And I love that way of framing what you just said which is that Katie you said that the work that you do isn’t about you and Carole, it’s about you and Carole and somebody else always. Is that what you value about your time Carole or is there something about that that resonates with you Carole?Carole: I think, I agree with the bridge because sometimes it takes a bridge to get things moving. Everybody has a way to connect with other people, even if Katie is not available I’m able to still go to like some of the meet ups with the other Lolita’s, if I know someone from our other tea event is going to be there. And I’ll go because I know them already.26:46 - 28:37Katie A: I think the cool thing about our work is it’s teamwork. It’s scary to show up to something by yourself and I don’t necessarily have to be the Starfire support person I’m just a person who doesn’t know much about Lolita.Katie B: How do you show up as a team member without it being “I’m her staff” and making Carole look or feel different than everyone else because you’re there?Katie A: I get to have the unique position of I don’t know much about Lolita so can you all educate me? And I am going to buy my first dress and..Carole: Yeah, I helped pick out the dress, and Brianna helped her let her know that it was a good beginners dress.Katie B: So there’s a way that you are adapting to this lifestyle? You’re starting to blend in in a way and it doesn’t mean that that’s something that you’re going to take on for life but Katie is this more of a way for you to show up more intentionally so that you do blend in not as a staff person but..Katie A: Right, right and it’s honoring Carole’s interest also. I think it’s important, I don’t know, it’s interesting to learn new things, I love learning new things. Carole has taught me lots.Carole: Plus I don’t want to introduce Katie as my staff.Katie B: How do you introduce her?Carole: My friend. Or this is Katie.Katie B: Yeah.Katie A: And I think we early on kind of made the agreement we met through volunteering because that really is what we’re doing, we’re working as a team to volunteer to build community..Katie B: I love that.Carole: So that way they don’t feel like, “Oh well this is an event, but we have a staff here..”Katie A: That’s not how I want to be seen either. You know, I want to be seen..Carole: Just put a sticker that says Katie right there, staff member.Katie B: It would be a lot harder to make those natural connections.28:38 - 30:52Katie B: And also Carole what you said before which is just so powerful is that Katie is so much a part of it in a way that is a catalyst, she helped get things moving by being a bridge. But if she stepped away tomorrow you’re still going on your own and people aren’t seeing Katie as essential to your presence.Carole: Yeah.Katie B: Yeah, you can be there, and Katie you’ve stayed out of the way enough for Carole to really be the one making these relationships. They’re about her relationships not you, you’re not texting Brianna, are you, at night?Katie A: She’s not asking me for any advice.Carole: No.Katie B: Well you guys this is such a beautiful story and thank you so much for sharing it I really appreciate it, you taking this time. What is your hope, let’s end with that, what is your hope for the next ten years Carole of building community around your interest?Carole: My hope in the next ten years I hope that a lot of people that have built good relationships with and community with, being more friendships. We’re small we’re very small so I’m hoping also that we get bigger. And we start to see other people making their own Lolita communities inside of Cincinnati.Katie B: A ripple effect. What about you Katie?Katie A: I would hope for Carole that you just keep making your voice heard, you have so many wonderful things to say and to bring to the community, you know.Carole: I will do my best.Katie B: I have no doubt, yeah. Well thank you guys.Carole: Thank you
Joy and discomfort
We have become a society conditioned for comfort. We struggle to sit on the train or wait in a line without scrolling through a newsfeed. We are obsessed with good-smelling candles and oils and set our thermostats to our exact preferred temperature. We like to surround ourselves with people who reaffirm our beliefs and who we can commiserate with, we surround ourselves with media that creates an echo chamber of what we are already thinking. We like to live around people who are just like us. We’ll do just about anything to stay comfortable and make sure that comfort is not disturbed. But where is the joy in that?
How to Know if You're On the Right Track | A conversation with John McKnight (Part Two)
Download the Pocketbook Guide: https://www.starfirecincy.org/guidebookTRANSCRIPT:Katie: Yeah so pivoting a little bit I’d like to talk about this idea that for people with disabilities especially because that’s what we care a lot about at Starfire, that this connection to social services usually means a disconnection from community life.That it means a person getting kind of pulled off the path of community member and onto a path as a client. What can you say just initially about how that looks and how that works for people with disabilities?John: I learned a lot from people who are labeled disabled, I’m not the wise guy on this. My response is I’ve learned from people with the real experience. One of these people was a Canadian named Pat Worth. And Pat was a younger man when I first met him, maybe 25, rather tall. He had escaped from an institution for the developmentally disabled, big old fashioned institution. And he said to me, “You know I think, one of the things, not all but one of the thing we ought to do is to organize people who are labeled in local communities so they could have a strong voice. Not their parents, not the professionals, but them, me, right?” He said, “You know about organizing, will you come with me for a month across Canada and see if we can start little organizations in the major cities of people who could come together and become a voice for themselves?” And so we did that and we got started with a fair number of groups. They chose as a name People First. When we got done we ended up in Vancouver after a month Pat said to me, “Now I think you can finally understand that our problem is not that we are disabled, our problem is we are disorganized. And the answer for us is to be organized.” But he also recognized, “and become active in communities.”And I think initially that he had the idea that People First would be entry points into community life because they would be independent of agencies and systems.Once we understand what Pat understood, that what we call and label a disability is really a name for a lack of power to join everyday life. The lack of power to join everyday life. And Pat had discovered how to make that power when he escaped from the institution, right?So one of the basic things I think about the movement is, is everyday life goal? Is being a citizen in connection with others the place in life that you’re trying to achieve? And Pat had that in mind when he formed the group, but he first thought we ought to get enough power to get free of people who were controlling us and then we would have the possibility of moving to the world where we were connected rather than disconnected, or disorganized.Another thing, one of my best friends, she passed away I think now three years ago, was another Canadian named Judith Snow. I think she was very famous in the United States too. And Judith was born so that she could only move her thumb and her face. And we became very, very close friends. She used to come and visit us for her vacation. And she told me one time she said, “You know it wasn’t until I was thirty years of age that I really understood who I was.”And she said, “I had spent so much of my life being labeled and accepting the label and fighting the label but that didn’t tell me who I was.” And then she said to me, “When I was thirty I had a revelation, and it is that I am exactly the person who God created me to be and therefore I have every reason in the world to participate in this world because I have God’s gifts.”Now you don’t have to put it in religious terms, you could say “I have gifts.” And so I think the relentless, relentless insistence that the critical question about somebody is not what’s wrong. It is, what’s their gift? And building a life out from their gift is the key to entering community.Katie: You know for listeners who don’t know who Judith Snow is she is a pioneer really in education, in training programs, she’s an author, she’s written a lot of things and I actually had pulled a quote of hers leading up to this because I knew of your friendship with her.“A gift is a personal quality that when it’s brought into relationships in a valued way allows opportunity to emerge.” - Judith SnowJohn: Oh boy, that’s Judith. And Judith was a person who wanted to be a part of everyday life and I remember one time we have sort of a weekend home up in rural Wisconsin. She knew I was a fishermen and so she said to me, let’s go fishing. And I didn’t know about whether or not that was something that was going to be very good for her or if she’d really like it. But we went and the place we went to fish had some canoes and she said, well if I’m going to fish, I’ll have to be in a canoe. And she was in a wheelchair. You know and the idea of getting her into that canoe seemed to me a little perilous. But she had an aid and we got into the canoe. You know they’re a little tippy, I was very careful, a little afraid. And we went out together and I fished and she talked with me and watched and enjoyed the lake. And I caught more fish than I’ve ever caught before.And I thought you know, she made me a real fishermen by taking her adventure, desire to discover, to be a part of it all. And she brought me into that world, and see what a benefit I got?Katie: And those are exactly the gifts that she’s talking about.John: Right.Katie: Yeah, I love the list that you share that she has, that she said the gifts that people with labeled with disability have. I’ll link to that in the show notes for people to see but it’s brilliant.One thing you mentioned when you were speaking about Pat’s story that I want to go back to is that sometimes parents, in the time that Pat was advocating and starting People First, parents were actually getting in the way of people with disabilities being part of community life. And now today, what we’re doing at Starfire is really putting families at the center of building community and we’re asking families and parents to participate alongside their children with or without disabilities to be a part of effective community change. So how do you know when you’re on the right track with that, as a parent, as a neighbor, as a connector, how do you know when you’re on the right track with building community?John: You know that very idea is pioneering. I’m looking forward to learning from these families what kind of things they did, sometimes it might not have worked, I’d like to know that too. So I think I would probably approach the question you’re asking the same way I would approach if you weren’t say, anybody involved happened to have a label. And I would say that a family might first examine themselves in two ways: number one what do we all care about? What common interest do we have? And the second is: what gifts do we have? Those answers to those two questions are the keys to opening your access into community life.Because you’ll usually find that almost any interest that people have there is some group, club, or association that is focused around that. So if you can come to that part of the communities’ life with what makes the group work anyway, a common interest about the same thing, I think that’s a pretty clear path to becoming engaged. Now you’re not creating something anew but something new may grow out of that relationship, right? And the other possibility is your gifts as against your interests. Your gifts are key to your entry into community. So what do we have that we care about, and can share, can use as our key and if we have been great stewards of Christmas maybe we can bring more Christmas to the block than the block has had before. I think that’s happened with one of your groups. So they’re looking at what they have to offer as the starting point that would involve other people who are attracted to that. Now, there aren’t a lot of people sitting around thinking, “Gee, I’d like to have a better Christmas.” But when a group of people offer them a better Christmas, right? All of a sudden they’re attracted. And that’s what makes almost all groups work.Natural groups, clubs, groups and associations in neighborhoods are groups of people who are together for one or two reasons or both. Number one they care about each other, number two they care about the same thing.Very often the way you come to care about one another is you get together because you care about the same thing. And then your care for each other grows. So those are the avenues I think of, what’s the ramp into the community? And it’s interests and gifts. And your honest conviction that you have something to offer, and not that the community will solve your problems.You have something to offer. Everybody does. I’ve never met anybody who didn’t have something to offer.Katie: So it sounds like you’re on the right track as long as you are using gifts as your north star and you’re focusing on that and the minute you start to veer off into some other direction maybe around your empty half or the problems, or going toward the service to fix things then you’re kind of veering away from the path.John: Yes, excellent summary.Katie: One of the things that you worked on in Chicago was a project called Logan Square. You were the principal investigator in this what became a publication written by Mary O’Connell. And in this introduction Mary starts to describe the myths of the ideal of a small town past where “people sipped lemonade together on the front porch, watched out for the neighbors kids, shared the works of the town and the fruits of their gardens.” And I think there’s a common argument, especially today, we’re very aware of how the way things used to be is oftentimes mythologized, you know, things were way worse back then for people who were marginalized typically who are left out typically. People with disabilities, people of color, people who are part of the LGBTQ community, people who are typically just like I said left out of communities. So when we’re talking about community building are you trying to get back to the way things were, or how do you marry those two ideas? Because I know you worked a lot with civil rights in your career?John: Well I’m not sure they’re two things. I think people who are concerned about civil rights are concerned about equality and they’re overcoming formal ways of exclusion. So you can’t discriminate against me when I eat or when I’m in a restaurant or when I’m seeking housing. Those are formal ways of overcoming exclusion. But the law can’t reach to a local community that may be exclusive, right? You can’t pass a law saying you can’t be exclusive here folks. You’ve got to include everybody.So I think our asset based development effort is always circumscribed by something that Judith said, and she was one of our best faculty members.She said, “It’s our job to ensure that there's always a welcome at the edge. That exclusion is not what binds us together but invitation and welcome is what binds us together.”I think that the idea of “civil rights” works as a means of dealing with formal structures and systems - but it is invitation and inclusion that works in the space that isn’t the formal world.Katie: It’s so interesting how you just put that because it goes back to what you said about police officers, we need to generate safety in our own communities. They can’t be the only answer, and same with laws, laws can’t be the only answer in creating equality or inclusivity. We have to be the inviters and conveners.John: People of color, people with labels of any kind live in a world where the majority or at least a large number of people, do not respect them. And laws will not produce respect. But if somebody on a block says, I know this person who's been on the margin and they have something to offer, come on in, we need you and that gets shared. Then you begin to see respect. And it’s the building of respect I think that is very much a word that says, we want you because you are valued, we know you have something to offer.Katie: That’s beautiful. I’d like to just end with one final kind of question and it’s something that I like to end on usually is hope but I think too we need change and sometimes when you end on hope it doesn’t motivate people to do anything on their own. So I’d like to motivate people today with this question. What is the most urgent call to action that you think we have today as citizens?John: Know your neighbor. Start at home. Margaret Mead said that all change starts with small groups of people. It doesn’t start out there it starts in here. So just historically if you want to change things, go next door, start there.
The 6 Gifts of a Community | with John McKnight (Podcast Episode pt 1)
John McKnight has spent a lifetime dedicated to the common good. He’s a Korean War veteran, who worked under John F Kennedy to create the affirmative action program, he was the Director of the Midwest office of the United States Commission on Civil Rights before leaving the government to work in communities. Among his many works, he is the author of The Careless Society – a critique of professionalized social services and celebration of communities’ ability to heal themselves from within. Alongside Peter Block, John is the Co-Founder of the Asset Based Community Development Institute housed at DePaul University and Senior Associate of the Kettering Foundation. And it also helps to mention that John trained a young President Obama in Chicago when he was a Community Organizer. He later wrote one of Obama’s letters of recommendation to help him enter Law School!I really hope this interview with John can help anyone on the path to building community in your own neighborhood!Check out free trainings on how to be a connector at ABCD institute: https://resources.depaul.edu/abcd-institute/resources/Pages/tool-kit.aspxAbundant Community Initiative in Edmonton, Canada: https://www.edmonton.ca/programs_services/for_communities/abundant-community-edmonton.aspx
What Families are Up Against
Among the barrage of back to school paperwork for a preschooler and a kindergarten there it is was. An unassuming invitation for after school dance classes. A description that says this particular program enrolls children who are at least 5 years old, live within the Cincinnati area, and are willing to attend class in dance appropriate clothing every week. And then, ever so subtly, an additional stipulation. In order to participate, they require that children “do not require special needs assistance for a physical or mental condition.”And there it is. An explicit “You Are Not Welcome Here.” I’ve heard from families of people with developmental disabilities that this experience is a common one for them. The metaphorical door slammed in their faces. It happens at birth of their child – what is meant to be a joyous day, is met with avoided eye contact… It happens when looking for childcare – we can’t take your child given the circumstances... It happens when enrolling and advocating for a typical Kindergarten class… It happens for soccer teams and theater groups and summer camps and scouting groups and after school rec center activities... A variety of voices saying, “No.” “We just can’t...” “We won’t be able to…” “Surely you understand…” This rejection can be explicit and in your face offensive, degrading, dehumanizing – someone calling a person “retarded.” I find however, that more often, they are the brief, and everyday occurrences that send the message verbally or otherwise that a person’s presence if disabled, isn’t welcomed, isn’t valued, and frankly, is inconvenient to everyone else. And in our folder, and in take home folders all across the school district, families of children with disabilities were also reading that flyer. It’s just a flyer for a children’s dance class, you may be thinking. Surely, there are other dance classes? Ones that children with disabilities can go to? Yes, it is just a flyer, and yes, it is just a dance class. And yes, there are other dances classes specifically for children with disabilities. What we are noticing is the instinct instead to separate, distance and push away, instead of asking “might there be a way to include everyone who wants to dance?” These rejections reinforce the explicit or implicit message you do not belong here. This isn’t for you.That while we said children who are at least 5 years old, live in Cincinnati, and can wear their tap shoes and dance pants each week, we obviously didn’t mean those kinds of children. While it’s just a flyer and just a dance class now, it quickly becomes a classroom, an apartment or house, a job, community and friendship and love later. The rejection is cumulative, the isolation it is creating is compounded over time. When this rejection is constant, what does that do to you? Your family? What you start to believe about your community, your neighbors, your friends, your own family? I don’t know the gutting feeling of my child not being welcome, of hearing no over and over again. But I can certainly bring it to light and work against the culture that believes this to be okay. That some of us get opportunity, invitations, and welcomed and some of us just don’t, and won’t, and can’t isn’t okay.At Starfire we’ve thought a lot about how to approach the work with an understanding of what people with disabilities and their families are up against. And, while my children have no interest in dance and we wouldn’t sign up anyway, and they don’t have disabilities so they wouldn’t be excluded had they wanted to, this is something that all other families would also receive in their take home folder. And just because it doesn’t affect my children, doesn’t mean it doesn’t affect our children. <figure class=" sqs-block-image-figure intrinsic " >
Primary and Secondary Purpose
<figure class=" sqs-block-image-figure intrinsic " > At a recent celebration of a past teacher of mine, a keynote speaker told a story of a purpose.A city dweller had purchased land on a whim in the countryside and had forged a connection with the farmer next door. Knowing little about farming, but having an insatiable interest in growing things, he bought the land and got to it. It was hobby project, not his livelihood– a summer home of sorts, but one that brought him such joy to experiment in planting crops and flowers. And as it happened, the farming adventure led to a friendship with a seasoned farmer next door who was willing to offer practical advice, lend tools and assistance, and guide the city dweller in his fantastical efforts.Years passed and the farmer’s wife passed on as well. Now much older, unable to care for the land into his old age, or keep up with the maintenance of the farmhouse, and the farmer found himself preparing to move into an assisted living home in the coming weeks. His beloved land was was being auctioned off as well as the farmhouse and most of its possessions.The city dweller purchased some chairs from the auction and went one day to collect them from the house. The farmer, happy to see his friend before his move, remarked that he was grateful that someone he knew and cared about was taking the chairs. Surprised by this, the city dweller inquired why this was. They were nice, solid chairs, but certainly not heirlooms pieces. What was it about the chairs?The farmer said that the chairs primary purpose of course was for sitting and that they were very good and sturdy for that purpose, and that over many decades those chairs had served he and his wife well in that regard. Sure, they had some knicks and scratches and marks from time, but their remaining days certainly outnumbered his own. Their significance was not in the primary purpose of the chairs, but their secondary purpose. And that was that they brought he and his wife together each night, to reflect on their days, which turned into weeks, which turned into years, and their lifetime together. The chairs provided a space for togetherness, for pause and conversation over a lifetime.He said the chairs held memories of his young pregnant wife, of her as a new mother nursing their children, of them watching storms dance across their fields together as a family. He said the chairs were where he became a grandpa, nestling a new grandchild and meeting each other for the first time, completely enamored.The chairs held precocious children (and numerous more grandchildren) in pouty time-outs, and children nestled on grown up laps reading stories next to the Christmas tree, and children’s coloring books and crayons which often missed the pages and made their presence known on the wood. The chairs had been the backbone of forts and caves and castles through the years with linens and sheets and blankets and doilies strewn across the top. They’d been the trusty accomplice, a partner in crime to reach the top cabinets in the kitchen where the treats were hidden from sight. The chairs held the occasional household cat over the years – and stacks of books and magazines that were read or sometimes just collected upon them to keep the cats off. The chairs, he said, had held friends, tipsy from summer porch beers and eyes wet from laughter, and sometimes held them safely until the next morning when they’d gather their senses and keys and head home. The chairs had held his wife, sick, with an afghan blanket around her as her remaining days dwindled. The chairs held visitors paying their respects after his wife died, friends who had travelled near and far to share a memory, and to hold his hand.The farmer remarked that the chairs of course we’re just a place to sit, and that the city dweller would find them to be adequate for that use – sturdy, reliable. That was their primary purpose of course, sitting, but their secondary purpose was to gather and that they had served him well throughout his lifetime.I listened the speaker telling this story, shifting uncomfortable in a folding plastic chair in a high school gymnasium and wondered about this notion of primary and secondary purpose. How many objects and things are utilitarian, and we miss the underlying secondary purpose of their everyday existence in our life? How many people are utilitarian, and we miss their underlying secondary purpose of their everyday existence in our life?We talk a lot about the purpose of jobs and Starfire’s approach to helping people with developmental disabilities in becoming employed. We’ve been successful in this work – helping well over thirty different people find unique jobs that fit their skillset and their limitations. From IT to marketing to gardening and hospitality services. The primary purpose of any job is to earn a paycheck and to fill up one’s time, to have something to do. But the primary purpose of employment isn’t why we’ve supported people with disabilities in finding a job and working to help them keep it. The secondary purpose is the driving factor behind this work of finding work. The secondary purpose of working for many people with developmental disabilities is more important than the primary. To fill one’s time is fine, necessary even, but not if that time is filled with meaningless, disrespectful, devalued tasks. Do we find jobs just to find jobs? The answer has always been a resounding no. The secondary purpose of work and Starfire’s work of finding employment has been in the nature and potential of relationships. In becoming a coworker, having a role within a team, being needed, being known, making a contribution, and perhaps in some places, and perhaps over time becoming a friend. Sure, a chair is a place to sit. But the farmers story tells us that its secondary, and perhaps true purpose, is providing a space for human connection.Sure, a job is a place to earn money. But perhaps its secondary- and true purpose in relation to our work of community building- is providing a space for connection as well. An additional avenue for people with developmental disabilities to be known, be seen, be valued, be accepted, be challenged, be needed, be respected.
Guardian of the Light
<figure class=" sqs-block-image-figure intrinsic " > -Campfire Girls Award ~ 1925I found this proclamation at an antique store a few years back and immediately purchased it to bring home to the Starfire office. It isn’t widely known, but Starfire’s origins date back to Campfire Girls here in Cincinnati before our inception as “Starfire” in 1993. As our history tells, the scouting organization was inclusive to people with and without disability – a vision of inclusion we hold still today.Through my investigation, it seems that the Guardian of the Fire award was given annually to a leader who exemplified the values above. And we love the wording and imagery it creates. (We’ve subtly used the campfire as a central image of connectedness and goodness a few times, too. Like in our video here) <figure class=" sqs-block-image-figure intrinsic " > <a class=" sqs-block-image-link " href="https://www.youtube.com/watch?v=d3mgCFirtag" > Over the years, Starfire has given awards to recognize leaders of inclusion in Cincinnati. These awards have been given to outstanding volunteers, paid staff, family members, and people who disabilities who have given back to the community in some extraordinary way. This year, we are proud to bestow the inaugural Guardian of the Light Award to recognize a person in the community who has furthered the work of inclusion, heightened the imagination of what’s possible in our communities, and lives these values through action.This year, Starfire will recognize Cary Brodie, who has shown a deep and consistent ethic of inclusion. Cary has been working to restore a half acre of woods in Madisonville that was given to the Park Board by Myron G. Johnson Jr. in 1972. The land had fallen into disarray, overgrowth, and a de factor trash dump. Cary, along with neighbors, spearheaded weekly cleanups, removal of invasive plant species, and land clearing to make it bird friendly again. In doing so, Cary has brought together dozens of neighbors from all walks of life – young and old all willing to work towards the vision of a beautiful restored space in the neighborhood. <figure class=" sqs-block-image-figure intrinsic " > Before and after photos of the changes in Johnson Woods. It is because of her vision, and her hard work and inclusive spirit, that Starfire bestows the Guardian of the Light Award: It shall be thy task to keep the newly kindled fire alight; To know the earth, the sea, the stars above; Hold happiness; seek beauty; follow right; Offer a friendly hand to all who ask; And, day by day, Lead sister feet along the golden way— The road that leads to work and health and love. Join Starfire at our 2019 Annual Celebration Friday, September 20, as we honor Cary and all those who have built inclusion this past year! Buy tickets (kids free!) to our 2019 Annual Celebration >> All photos courtesy of Johnson Woods Bird Sanctuary on Facebook <a role="presentation" class=" image-slide-anchor content-fill " > A group of nieghbors with Cary (far right). <a role="presentation" class=" image-slide-anchor content-fill " > More neighbors of Cary's. <a role="presentation" class=" image-slide-anchor content-fill " > A work day clean up <a role="presentation" class=" image-slide-anchor content-fill " > <a role="presentation" class=" image-slide-anchor content-fill " > Cary includes a neighborhood kid who helps water new plants. <a role="presentation" class=" image-slide-anchor content-fill " > Danny and Cary pose in Johnson Woods
The World of Lolita, a Japanese Street Fashion
When Carole and I became community building partners I had never heard the word “Lolita.” Beyond the word there is this beautiful culture that I was completely unaware of. If Carole were to relay a story of her first time telling me about Lolita she would probably laugh remembering my attempt to repeat what she said. She would continue by telling you about how she patiently began introducing me to a world and culture that she is so passionate about.If you have never heard of Lolita I will try my best to introduce you in a few words. The dresses are inspired by Asian culture and have a vintage flair. It is also referred to as Japanese street fashion. They have sweet, feminine details like lace, frills and ribbons. Accessorizing is also important. Shoe choice, tights, jewelry and hairstyle pull together the look. It’s not a style that you would wear to a job interview or to school, but rather to express a feeling of joy and happiness through fashion design. Each dress is a work of art. <figure class=" sqs-block-image-figure intrinsic " > The more I thought about Lolita the more I realized the unique power within the community. Our job as community building partners is to meet people who share similar passions with Carole. It’s obvious as soon as two Lolitas meet each other. They have a powerful sense of self and a desire to be independent of how society defines beauty. This deviation from society’s definitions allows for a more inclusive world - I had never heard or seen anything Lolita related, and wherever we are, whoever we meet, I am welcomed by someone new who is thrilled to introduce me to her passion. Creativity radiates from their soul. It is beautiful. So began my journey in collaboration with Carole to create regular, inclusive events among this fashion world that would hopefully draw beginners and experienced fashionistas alike. Carole worked to create a Facebook event, a tea party and lunch, that drew in three interested women. The second event drew in five women. It is Carole’s leadership and sense of self that brought these women together. Often it isn’t easy to leave your comfort zone and meet up with people you don’t know. Our brains can be pretty unforgiving imagining all of the things that might go wrong. But she persisted. We planned events that didn’t go as planned and she was willing to come back to the table, brainstorm, and keep working toward her goal. She has been successful in making multiple new social connections, and it is due to her intentional networking that the connections continue to grow into closer relationships. What we learned in collaboration with each other are lessons that can’t be taught in a book, at a conference, or in a class. It takes bravery to meet people and experience that unique joy you feel when you connect with people who share your same passion. People are waiting to be asked about their gifts. Don’t be afraid to ask. What if Carole hadn’t brought these wonderful, brilliant women together? What if I had never learned the word Lolita? That one word has enriched my life and I’m better because of it.
Live Storytelling: Believing in a Different Story | with Kathleen Cail
Kathleen shares her story about her families’ belief in a life with big possibilities and dreams - and not being defined by disability. <figure class=" sqs-block-image-figure intrinsic " > TRANSCRIPT: When Grace was born she was born with some issues, we didn’t know right away it took a few months. But for some reason my husband and I took on this belief that we were not going to be defined by whatever this was that was going on with Grace. And it was partly because at that time we had a three year old son and we just kept thinking like ok so we are going to have some serious issues going on with Grace we are going to have to give her lots of attention we get that. We understand, like we went to counseling and we understand we are going to constantly grieve the loss of her dreams or our dreams for her, etc. etc. But we kept thinking we’ve got this three year old boy too, we can't just be focused on Grace. And we can’t define Ben by Grace. And I didn’t want to be defined by Grace. Like I saw myself having friends and connections and doing things that were unrelated to disability. So we really had this mindset that we can’t be defined by this disability. And I will tell you that it is profoundly hard to work against that because for my daughters condition there’s an organization out there, she has a neuromuscular condition so its MDA. So immediately, MDA gets involved right at the hospital, they want to be involved in your life and they want you to give money and all this other stuff, right? And if you have someone who’s born with Down syndrome it’s the exact same thing, right? And I’m sure it is with autism and all of these groups. And I understand that all of these groups do really great work and some of them like the MDA fund a lot of important research for treatments and cures and all that stuff. So I am not down playing the importance of that, but what happens as a parent is you’re inundated from the get-go with ‘be a part of the disability community.’ And that was hard for us because we were thinking like ok, we are not this is not who we are, like we don’t define ourselves this way. We had this belief in Grace from the get-go and I remember a doctor looking at me like I had four heads. And I told them all Grace is going to go to college and she’s going to do whatever she wants in life. We had these huge beliefs that Grace could do anything, in some ways it was bad because Grace isn’t going to college. And to have this mindset of that being what defines a successful life, is not good. If she doesn’t go to college that doesn’t mean she isn’t important or wonderful. The good part of it is we just always had dreams for her. And we believed she could do a lot of things. So we weren’t even in therapies and we love OTs, but you know you get to a point and you can’t applaud what accomplishment she just made, you immediately have to fix the next thing. But we wanted to be focused on the positive. And we would say often we don’t want to be the poster family for MDA, we don’t want to be the poster family for disability. And that’s how we lived our lives. And then after that, we found a school. And literally this school — I went in one day, they never looked at Grace in terms of disability. It just wasn’t an issue. Grace went in and she needed a walker at this time to go in. She went in with her walker and they did, I don’t want to call them interviews, but it was just to see if the child was ready to go to school at that point. And she went in with her walker and she did what most two and a half year olds do, which was cry like anything because their mom just left them and they’re in this room with all these kids they don’t know and never met before and these teachers. They accepted her and I want to make sure I quote this correctly, but I remember going into school one day for these little teas that they do, it was a Montessori school, Mercy Montessori. And they invite you into a tea that your child does for you. I went in and we were sitting in this little circle in these teeny tiny chairs. And the kids are all on the floor. And Grace is on one side of me and another kid is on the other side of me. And the other child puts his or her (I don’t remember) hand on my leg and says “now she is going to need to use your leg to stand up so she’s just going to stand up that way.” I was like oh my gosh, like he didn’t say she can’t get up. What that little child said was this is how she does it. And then I followed her to her work, which is what they call them at Montessori. And her partner said to me, it was a little boy. So you will see that I do it this way and Grace does it this way and we just both get it done. And it was amazing. Now one of the things that I did do is they asked me if I wanted to address the class, when Grace first joined and talk about Grace’s concerns or issues or anything. And I said no I don’t want to do that because then what everyone hears is that Grace can’t do this, or you need to help her with this and I just felt like everyone will figure it out. Between the teachers and the students, they all figured it out. And it was just beautiful. And we stumbled across that. We really did. We were just looking for Montessori setting because our OT said I think it would be good for her to be in a Montessori setting. So that’s all we were looking for and this is what we found and it was wonderful and it was in line with what we valued as a family, but we also failed. So swimming upstream, we finally cave at one point. MDA said we’d really like to hear your family's perspective it’s a little different then a lot of our other families. And I thought well that’s fine we could do that because they’re letting us talk about our perspective. Well it was awful, and I had to cut it short because basically they wanted me to tell a sob story about our daughter in order to get money, right? And I hate it, I get it but I hate it. So the man came to our home and started to asking me these very specific questions that were to go down this sob story path. And I just had to say look we’re not going down that path. You either say what we want to say or we end it right here. So he let us say a few things and I think it was a very abbreviated I think film for what they were looking for. But we learned a really valuable lesson that you have to hold strong, you have to understand what other peoples’ values are, because even when you cave, maybe you cave into someone who really shares your values. But there are going to be lots of places where you feel like you’re going to cave and you do cave like we did, and their values are not our values and we didn’t get that. If we had gotten that, we probably wouldn’t have caved. The other thing that I would say is, you know, as a family we do struggle. My husband worries about the finances, (I’m not crying I really have something in my throat) — I worry about the friendships, whose going to be in Grace’s life. We’ve taken Grace and Ben to several countries, multiple times. And Grace’s disability has never stopped us from doing anything. She’s had this amazing life and that helps move me upstream. Where we are today is, we no longer have our dreams for Grace, we have Grace’s dreams for Grace. Her dreams are to become an actress on Broadway. So we are not going to crush Grace’s dreams ever. She can try to do that as long as she wants. We will support her to the best of our ability to do that. Eventually she’ll figure out that, you know what, I just want to be in Cincinnati and if I can be in something related to theater and history I’ll be good. And I think she’ll come to that on her own. So we’re on this path now where she’s doing a lot of things around that.. She’s doing a one-woman show, that she and myself and some else has written, and she’s going to perform that hopefully in the spring. She’s doing this with an actress who actually was in the movie that’s just out with Robert Redford “The Old Man and the Gun” I think it’s called, and she works with Grace every week. Grace has invited her to go to some plays and she has gone to these plays with us. So this is a person who until Grace’s high school acting teacher gave me her name, she had no sense of anyone with a disability. But she understands what it is to be an African American woman in the theater. And so she knows how you can be marginalized that way. We also - we support her to have people who know her. So Grace today is in the church choir, she’s not in a special needs choir. She's probably not the best singer, in fact I’ve kind of thought she might be the worst singer until the other day and someone was a cantor and I though, yeah maybe not. She's working with Starfire to do a StoryCorps. So people are seeing Grace now as the person in the choir but also the person who is doing this StoryCorps thing. And when Grace is not at choir, people stop us on the way out of church, “Where’s Grace?” She’s missed when she’s not in choir. So those are really great ways of Grace being in the community. So slowly but surely — Grace is in a valued role. And I think that’s all I wanted to say. That’s our family.
Timeless Way of Building – Italics Only
<figure class=" sqs-block-image-figure intrinsic " > Christopher Alexander’s book, The Timeless Way of Building, is one of my very favorites. It is primarily seen as a book about architecture, but is also a book about a way of life. Alexander wrote the book in a beautiful way, with one or two lines in italics that sum up the general principals of his thinking, followed by un-italicized prose that dives deeper in the specific applications to architecture and design. He suggests reading the italicized parts first, then going back and re-reading the entire book, which can be accessed in it’s original form, but digitized, here: https://archive.org/details/TheTimelessWayOfBuilding/page/n2At the risk of breaking up the pattern, I was interested in a version that was italics only, for ease of reading, and so converted the PDF to the following document, and edited out the un-italicized portions. I told a few people about it and they asked if I could share it and there seemed to be interest, so here it is!In the transition from PDF to text, some of the translation ran into trouble, so I reformatted any typos that popped up. In particular, commas were translated as “y” or “-“…and there were many cases where “p” was interpreted as “f.” I think I’ve caught all of these, but it is possible a few remain. If you discover any of these in your reading, please email me at tim@starfirecouncil.org orteevee999@gmail.com and I’ll make the edits. There are also a few italicized lines that I edited out as they referred specifically to pictures in the book, which were confusing as I read them. I think there might have been only 3 or 4 instances of this and I left any that referred to pictures but also contained narrative included. If you have better ways of thinking about this or suggestions – add the pictures? – that is welcome, especially if you are willing to work on it.Enjoy and please remember that this is no replacement for reading the whole book. This is simply a way to get started into it and I created this in deepest respect to Christopher Alexander and the content, which never is far from my mind as a constant inspiration.Here is the link to the PDF:Timeless Way Italics Onlyenjoy!
Love and Other Superpowers - with Rita Covington
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If Community is the answer… - with Bridget Vogt
TRANSCRIPT:0:00 – 0:44Bridget: I’m Bridget Vogt and I have worked at Starfire for twenty years in a variety of ways.Katie: That’s two decades. So that’s a long time. What has been all the variety of ways?Bridget: When I first started it was just office help and doing the outings that we had during the evening and weekends. You know a few years after that we started a day program so I started that, doing the day program. A few years after that we started StarfireU, so I worked in both and then just StarfireU and now I am doing one-on-one work with people and their families.0:45 – 2:46Katie: What do you think has changed in the way that you show up to work from then and now, and what has stayed the same?Bridget: Well I’d say there’s just a different way of showing up when you’re starting your day with a room of 12 people or 15 or 20 people with disabilities versus showing up and talking to one person at a time. There’s a much different energy, there’s a different effort, there’s a different priority that is just the reality of probably day program life. You know, you’re hoping that everybody gets along and that they can say they had a pretty good day and I think the days of working with a group of people at a time it is more about being an entertainer and showing them a good time and keeping them happy and building them up. Now working just with one person at a time it is still about building them up and making sure they’re confident but it’s not quite the same, the word entertainer keeps coming to mind. The people who were really successful in the day program that keep coming to mind were the staff with big personalities who drew people in with just who they were naturally and they could almost perform, if that makes sense. They were a good storyteller or funny, all those things, and that’s not necessarily as useful or needed with just one person. So you’re still building into the person to help them understand who they are and that they’re a good person, that they have gifts to give, what are they, and figuring all that stuff out. And that’s kind of the biggest difference is working with one person and thinking.. You know.. Where do you belong... what do you do? Where are you going to be happy doing?Katie: Yeah, so it’s a little bit more of an in-depth conversation when you’re sitting with somebody, you don’t need to be the entertainer. You need to be the deep listener and over-shadowing a person by being too enthusiastic or too much of the entertainer could give the opposite effect than when you’re working with just one person at the time.Bridget: Yeah, I think that’s possible. Like I definitely think that’s happened, you know we’re working to help people meet people and if you kind of take over and don’t let that person who you’re working with shine more than you than you’re not doing a very good job.2:57 – 4:30Katie: Yeah, so you stayed through this change, and you’ve had to turn on different parts of you or skills/strengths that you have during the change, and so what’s been really consistent about the work? Obviously, it’s kept you here, doing it.Bridget: Well I think we have, one way or another, throughout these times — we did what we thought was best and that’s still the case. I care a great deal for all the people we’ve met with disabilities out there. And to recognize that appealing to a group of people doesn’t change what happens in their lives in ten years. Letting that sink in and figuring out how to do something that hopefully will mean something in ten years with or without my presence is the bigger key too. So I think that’s what keeps me here, is the belief that what I’m doing is going to matter in ten years to these people that I know. Katie: So obviously like a deep well of love or care for people with disabilities is consistent in you, you showed up in both worlds with that, with that intention.Bridget: Yeah, yeah I'd say so. There wasn’t a whole lot of outside forces drawing or keeping me. There are plenty of potentially simpler things to do out there in the world definitely probably more lucrative things to do out there in the world but that’s not where my heart was or what I felt called to do. Annd Starfire seemed like a good place at the time when I started here.4:31 – 6:30Katie: Yeah, Starfire had something different even back then twenty years ago than other places, it was founded by family members who were looking for a better way and so that thread of intentionality and family driven-ness has kind of carried through.One of the things you told me before this podcast around building community was that If we want other people to learn how to build community or do it on their own we have to really learn how to do it ourselves. Take me back to when things did try to shift to Starfire being more of a community building place for people with disabilities to connect to the community — and what was your involvement in the community when that change started to happen?Bridget: You know, before anyone saw any changes at Starfire before it started to change Tim and I, mainly Tim, started doing a lot more learning around topics like asset-based community development (ABCD). And being introduced to some concepts that we had not heard of or knew anything about and kind of working through those and wrestling with some of the things we were learning with. You know if there was a belief that the community is the answer, it sounds great that the community can be the answer but we don’t always see it. But part of why I think for us what we had to acknowledge was well our community is not our answer, we’ve lived in Bellevue for three years and we don’t know anyone, we only know two of our neighbors and that’s probably about it. And we go to work and then we come back and then we had some old friends from like college and high school and those are who we see and not our neighbors.That was sort of the beginning of noticing, we don’t really know our neighbors so this idea of community being the answer is just ridiculous. But is it ridiculous or is it that we just haven’t tried? And if this is possible, if community is the answer, then we probably need to figure out what community it is, and what does it look like and what are we doing to be active in our community. 6:31 – 7:06Katie: Describe Bellevue, describe what that neighborhood is like.Bridget: It is one square mile, in Kentucky, on the river.Katie: Is that it?Bridget: Yeah, one square mile.Katie: Oh wow.Bridget: You didn’t know we were that little? So it’s pretty small, what else would you say about Bellevue. It’s overall a working class neighborhood.Katie: How many people in the one square mile?Bridget: I don’t know.Katie: It’s pretty concentrated, like there are a lot of houses.Bridget: Yeah, I mean it’s urban. You know houses are very close together there’s not a lot of yards.Katie: There’s a big.. There's a great little main strip there with coffee shops and...Bridget: Yeah like your typical main street.Katie: Kind of on the river.Bridget: Close to it, yeah.7:07 – 9:16Katie: Ok, so when you’re thinking back to that time and you’re just learning these new concepts around community building and you’re looking in you’re neighborhood and you’re like ok there’s.. We don’t have any connections here.. Did you have any revelations at that time or what started to shift and how did you start building community?Bridget: Tim was a little more, I know he had been to Peter Block and John McKnight and they had been talking about neighborhood interviews. Truly going and finding people and interviewing them and Tim did that. He was like, “Alright the challenge is I’ve got to meet five different people, I’m going to interview them on their gifts and talents,” and then he was like, “you should too.” And I said maybe in a more informal way.Katie: What was your hesitation around that?Bridget: Yeah, well it’s weird right, like this is an awkward beginning of like ‘hey stranger’ or someone that I’ve just seen in passing, ‘Could we sit down and I’ll interview you?’ I think anyone would say once they’ve done it it’s not weird at all it’s just the hurdle of asking. Because I think I did talk to a few people but I didn’t… I would just kind of talk to them instead of like scheduling it. I would just kind of be in a conversation and kind of work my way through what the interview probably would be.Katie: So like what are your talents, interests, passions, skills?Bridget: Yeah what do you like to do?Katie: So you kind of start with the low hanging fruit, I already know them..Bridget: I started with the easy-peasy, ‘Hey friend that I already know’ and then we started talking about doing a starting a community garden in Bellevue, I wanted to do it, one of the people we like already knew was interested in doing it and then that kind of grew out of there. Like ok throw it out to the masses, who would want to start a community garden?Katie: So once you started talking to neighbors you start to kind of plot ideas? I feel like that’s kind of a natural thing that happens just with people, is once you get to talking you start talking about what would be great in our neighborhood? And that conversations just kind of naturally evolves right like, probably pretty informally like the way that your conversations evolved.Bridget: Yeah I think so, like what would you want to do? Oh do we have this here?9:17 – 12:36Katie: So did you find that there are people who are really driven/motivated to get something created off the ground like ‘ok we’ll do all the plans for the garden’ and then there are the people who step in once it’s there and say ‘yeah we’re going to establish this and make it set’?Bridget: I don’t know, there were some people who were interested in the beginning but they had some pretty… They were randomly enough when I went to community garden training there were two other people that I never met from Bellevue.Katie: Is that how you got started was just to go and learn how to do it?Bridget: That was one of my commitments, is I said I'm going to well I thought that I would get one I would interested helpful practice probably. And all the like powers that be were very supportive like the neighborhood association the people that were there at the time, had talked about it but they’ve never done it and I’m like I’m really going to do it, I’ve already signed up for the class. And they were like sure, go for it, you know we’ll support it and you can do it under the neighborhood association umbrella.Katie: Had you gardened before?Bridget: Just in the backyard a little bit, I mean I still would say I’m not an expert gardener. Whatever, you plant seeds that grow, maybe they don’t, and that’s ok you just. You just keep going and that’s what’s great about it because the weather is unpredictable, the season is unpredictable. There’s no guarantee that just because you did it well last year you could do the exact... You could think you’re doing the exact same thing and it’s not.Katie: I like that approach, I really like that because I think there’s a lot of wisdom in that for people who want to do something that they don’t know how to do and maybe think they’ll never know how to do or be experts at, and for something like gardening that can be really intimidating. And what you’re saying is that’s ok even if it fails. The whole point isn’t necessarily...Bridget: Well, and that would be my perspective on it and what I bring to the community garden. I think I was talking about how there were two people at that training who wanted to grow their own food. They had plans to make a community garden, they wanted to sustain their living, they wanted to plant enough food to last their... They wanted to eat off their land. But it wasn’t going to be their land it was going to be some neighbor’s property that as an empty lot. And we kind of parted ways because they were very serious about, like we will be producing enough food for ourselves and the difference between the lot they already thought they could use and some of the lots like empty some vacant property that we were looking at they were like “oh there’s not enough room, not enough room” and I was like “not enough room for what?” But like my idea was not going out to produce enough food to support all of Bellevue.It was always going to be a community garden, a place to meet, a place to garden, a place to enjoy each other. And hopefully get some vegetables out of it. So meeting those people at first was exciting and then it was like this is a struggle, they were not interested in the community aspect of it.Katie: The community aspect of it is what.. And that’s what you went to people with.. It wasn’t do you want to grow vegetables it was do you want to be part of a community that is growing vegetables?Bridget: Right. Yeah like bring your kids, it won’t matter, we won’t care. No hard core rules no you know some of the strict regulations.12:37 – 15:18Katie: That’s the key. So then how did the potluck evolve?Bridget: There was ourselves and another family, the Salzmans, who I guess we just decided we should try it. There wasn’t a whole lot of planning involved other than like we all do it once a month, we’ll have it at the city building and that’s it. And we don’t know what will happen, I think it was just mainly them and just saying like well it might just be the four of us - and kids who show up and we’ll just see what happens from there.Katie: And so during this time, you guys are starting to shake a little bit of your patterns about how you live in your neighborhood, can you talk about some of those smaller micro-things that you’ve done to build community and ways that you’ve also met neighbors. Because you know it helps to have that form of communication where it’s not just a flier going out. What were the ways you got to kind of know more neighbors so you could make those invites?Bridget: I think a lot of it was, one the coffee shop became much more of a hub. So there were people coming and going and just running into people and saying hello. There were programs that our kids did, like there was a basketball program with young kids and we walked around, I think we went around to a few different people and talked to them about, ‘hey would you come? You’d be welcome.” There was a neighborhood group started on Facebook too.Katie: And I love that you guys do stuff in your front yard too.Bridget: Yeah we usually have our fire pit out there, so we’ll sit out there. Halloween we sit out there with a fire and hot dogs or just anytime and there’s quite a few kids in our neighborhood especially at this point, that just kind of wander around, hang out looking for stuff to do. So if we’re doing that they can come and hang out and sometimes their parents come with them. Sometimes it’s a formal ‘hey we’re having a fire pit who wants to come?’Katie: And the same spirit happens at the garden. Right where people just kind of walk by and they see it so that’s an invitation?Bridget: Yeah and I have gone to the school and done, like with the after school program, pretty much since the beginning brought a group weekly or however often works in their schedule. So there were a lot of kids then that I got to know who I would meet their parents somewhere in the grocery or wherever and be like ‘oh hi I know you’ and then they’d have to explain who is this lady? And then there is stuff like when people walk by, still like ten years later like ‘What is this? We have a community garden?’ And the community garden was communal, that was the other thing that we did, it’s not as if you pay a membership due and get so much property or square foot bed, it’s just everybody gardening together, so that if somebody is to come once, they don’t have to wait until next year to get their bed or whatever. They come and they can do whatever we’re doing, like everybody works on it together, same thing with kids and everything.15:19 – 16:44Katie: So I mean taking it back to when you guys were first looking at Bellevue and saying this is not a place where we can build community to today it just seems like...Bridget: I don’t think we thought that we couldn’t build it but we just hadn’t.Katie: Yeah or I guess..Bridget: We just didn’t know what community was, like to sit back and be like ‘oh yeah when we grew up we could talk to all these neighbors and we did run.. Like I did run around with my neighbor friends, there were five or six kids I was allowed to go around the block... I just think we as adults had not even attempted. Like we were just the people coming in and out our front door, parking, getting out and going out to work, coming home and staying home or going out somewhere else. And we just had that shift of well what is going on here in Bellevue?We should be a part of this. If this is where we are going to live, let’s live here. It shifted from work and people we know from work or old college friends that we’re going to go visit and see to shifting to like well who are our neighbors? You know maybe we thought that the neighborhood itself wasn’t very welcoming like when I look back nobody welcomed us what the heck. But we’ve been here long enough we are the people who have lived here, we should be the “welcomers” so I think we just kind of recognized our own role. If we want our community to look a certain way we’ve got to do it. We can’t wait and think well nobody else did that, so I guess it doesn’t exist.Katie: That’s just not part of our neighborhood.Bridget: It’s just not a thing.16:45 – 18:41Katie: And that’s also something that you almost don’t want to impose on people its like ‘well nobody else is doing that here so maybe that means people don’t want it and if we tried we’d be imposing’ or we’d be asking people too much. But I’m wondering too is there something to the rhythm of the garden and the potluck that has allowed for this to take shape?Bridget: I don’t know I wanted to make a community garden. I think that as far as where is your energy best, where gives you energy, what makes you happy is a big factor. So if it’s going to make you miserable to garden then you’re probably not going to be the person that starts the community garden. Like you might help with some aspect of it but going to the garden overall is a fun time for me, I enjoy it, it makes me happy. I love when new people come I love when old people show up versus trying to do something just because I think it’s a good thing to do, if that makes sense. There’s definitely been times and roles that I have taken on because ‘oh wouldn’t you, would you be willing to do this for us, you’d be really great at that’ ..Ok, I can do that, you know I’ll commit to that role… and then realizing this is killing me.. Like this just makes me miserable, why would I say I’d do this and now I say I’ve done it so I’ll do it but I’ve got to step out quickly. And I think that’s more like there are plenty of ways to build community and plenty of things that you can do, I think it’s just making sure you’re enjoying them. And then it’s also possible to make sure you’re enjoying them with the right people. You know some of those..Katie: Keeping an eye out for who is going to be in the same.. Who has the same motivations as you.Bridget: Versus being like, oh if you’re willing. You know sometimes you agree just to have help, to have anyone on board to do something but if its... You know what you want and you’re going the wrong direction you might be really disappointed.18:42 – 21:04Katie: You can be discerning when you build community and it doesn’t mean you’re not a good neighbor.Bridget: Yeah, I think the other things we’ve done like the potluck we were very conscious of doing things that are simple, keeping it simple, don’t make it complicated, don’t promise gourmet meals. We have never said that we are going to... You know the tables will be set up by 5:30 and we will have brought the main dish, anything like that. It's kind of, the more people come the more comfortable they are, like “oh it starts at five o’clock and that means we just get here at five o’clock and we start setting tables up and chairs and arranging the room it doesn’t mean at five o’clock dinner is served and you’ve walked into like a dinner party with tablecloths. It’s very laid back, we make sure there are plates which actually on Sunday we ran out but oh well. People figured it out, they reused some, ate off the cake plates.Katie: Yeah, that’s the part that stresses me out about potluck, when I hear it and I think of hosting it I think I have to bring the main dish, I have to be the one to set up everything and you figured out a way to make that low key.Bridget: You just kind of set it up with the expectation of 1) there’s not really a host, like Ryan will put it on the Facebook group and he’ll set the events, it’s every fourth Sunday and that’s kind of done for the year actually. Between a few of us we throw in paper plates and forks every once in a while, so yeah and just kind of knowing we could have put the bar really high from the beginning but I think at that point we were aware enough to know that that would wear us down. We wanted to make sure it would be nothing any of us dreaded going to and that’s not going to keep it going.Katie: Yeah, and how could you ever go on vacation or have a missed week?Bridget: Yeah and if we’re not there what do you do? You know luckily there’s not a key, the way Bellevue works is we just call the police and they have a key to the building and they let us in. Now anybody, the early birds know that. So if we’re not the first one there the other first person knows ‘oh I just call this number and they’ll come and let us in and we can get the tables out and start moving things around.’ I mean that all took time you know, but I think just to be cautious or thoughtful about if it’s something that you want to do for a long time, what is it that you enjoy doing and it won’t drain you over the long-haul?21:05 – 23:13Katie: And how often do you go to the garden? How often are you..Bridget: In the season I’ll go twice a week.Katie: Ok, and are you going at a set time when everyone else is coming too?Bridget: Yes, Wednesdays 6:30, Sunday at 9:30.Katie: So you have set hours?Bridget: Those are the established.. They kind of shift from year to year but usually it’s like Wednesday night and Sunday morning.Katie: Ok. How many people would you say are showing up to these different things, does that even matter? How important is that to you?Bridget: It’s great when there is a crowd. There’s probably like 30-40 people plus kids, and then some kids at the potluck.Katie: Starting out it was just you and the Salzmans right?Bridget: Well a couple more people came and even then obviously in the time that we’ve been doing them, who shows up and who is still showing up has changed. The same thing with the garden, some people who were really helpful and got us you know came and did some hard work at the beginning, you know one couple’s moved out of Bellevue another one is still semi-involved, actually a couple of people have moved out.. You know so some people who were involved are gone. And now it’s a different wave of people almost. And then there’s people that for some of those people that were a part of the community garden they never came to a potluck, that wasn’t their scene. We even though it is kind of close.. Bellevue is pretty small, so you could be conscious of — ‘oh they’ve never shown up once’ but it’s not their thing. So I think to just keep that.. Because when you first.. When things first get started and they’re sort of in that fragile state of beginning, it is sort of fragile right and you think ‘oh how come they aren’t coming to the garden, I thought they’d help and they’ve never shown up.’ And you can take it personally but then again another part of living in a neighborhood for your life is expecting you to live by these same people. So if you want to hold a grudge about the fact they said they’d show up and they didn’t you probably aren’t going to be great neighbors, you know like this is a lifetime of living so let’s not hold a grudge about the time they said they’d show up or why didn’t they and all that kind of stuff. Because that’s not necessarily going to help build community either.23:14 – 24:18Katie: One of the things that I’m wondering now is if it is a new neighbor and they want to get involved in the garden, do they contact you? If they do want to come to the potluck is there a main person there to kind of coordinate things or..Bridget: I think the Facebook group is a pretty big communication device for everyone, and that shows the times and then if somebody asks a question then the person tags my name or somebody else in there and say “hey they want to know about this” or you know I think Facebook is a big driver as far as communication that I’ve had and then it might be a personal message or text from somebody whose met, you know maybe they live next door to somebody who had that question and they say ‘oh here’s her phone number or I’ll text her or email her.’Katie: So you are the main contact for a lot of these questions for the garden?Bridget: I mean for the garden I am, I don’t know that anybody really reaches out for the potluck as much as they would just show up and be like ‘what is this, who should I talk to?’ And then people would probably point out a few different people to talk to there.24:19 - 26:40Katie: So when people talk to you I guess they see you as a coordinator of the garden especially, and they come to you and they have a brand new idea for the garden or they want to implement something, being in that role as the main contact how do you deal with that how do you respond?Bridget: Usually it’s that sounds great, you can do it. Just recently we had a big, one of our neighbors was part of Crossroads and she was leading a go global effort in Bellevue and she wanted to do it at the community garden and she was like, “I’ve got some ideas” and I was like “I’d love to hear them” and they wanted to put in a pergola and a grill. The grill didn’t happen but the pergola is up and it was like that would be amazing, that would be great, and they did it. There have been many suggestions like at the potluck we should use silverware, all this plastic and I was like, “I hear ya I bring my own.” My answer to that is me and my family, we have the dishes we come here with and we take them home.Katie: So you bring your own set of dishes and silverware?Bridget: I do.Katie: Oh that’s smart.Bridget: But I provide the paper ones as well, but one of the people who comes says we should really.. Or shouldn’t we all.. We should just have silverware here and I’m like, “if you want to bring it and take it home and wash it I would love it.” But I am also making it clear that I’m not volunteering to do that.Katie: To clean everybody’s dishes.Bridget: I am taking home these five plates and these five forks because I would really probably resent everyone as I washed their dirty dishes.Katie: Oh my gosh yeah.Bridget: But I would love it if somebody really was motivated and was like I’m going to do this, this is my thing I’m going to do every month, I would totally support that.Katie: Yeah it goes back to do what you want other people to do, sort of be the change by living it. I think people forget what an individual looks like versus what an organization looks like. It’s like an organization who runs a potluck would probably take that and implement a new system of dishwashing because they could but an individual or a family..Bridget: Or organize like it’s your month. Like could you imagine the rotating..Katie: No.Bridget: Who knows.. Who knows what any organization would do.Katie: But that’s the slipery slope of it getting really entangled and emmeshed in this sort of process, agenda, structure that ends up killing the spirit of it.26:41 – 34:21Katie: Now when you look at your neighborhood, Bellevue, what does community look like? What would be like a key image?Bridget: There’s a few that come to mind, like one is the ability for my... like Patrick who is old enough and friends live with he just walks around and finds friends. Like that’s a pretty great image for me, like that’s kind of his classic line at this point is “I’m going to go out and find some friends, I’ll be back.” That’s a pretty big deal for your kids to be able to go out and find some friends to play with. I don’t know there’s a lot of images, you know we just had the memorial day parade and we weren’t in the parade but knew.. Waving at all the groups that were walking by, how many people we knew or as people go to sit down or as we go to sit down talking to so many of the people that are around that’s pretty great.. That's a big day for Bellevue I feel like Memorial day parade but pretty great.Katie: Do you ever feel the need to go back in time to this hidden life in pulling in from work and going in the house and not talking to any of your neighbors, is there ever a time when you not regret but wish you could be more under cover in your neighborhood?Bridget: I don’t think so, no, like I said I think there is the things you learn about being in community and being around your neighbors of knowing how far to take of personal feelings right, “oh you hurt my feelings.” And kind of working.. Being aware of who you are and why that hurt your feelings, like don’t hold onto that forever because I could find a way to probably be upset with a lot of people if I wanted to, right? Like we could find hurts everywhere or slight grievances whether they’re real or not, whole other story, but if I wanted to take that as a personal afront to what they said or not showing up..Katie: Or even just differences in political opinions.Bridget: That would be a big one right now. Like stuff like that, Facebook profile what somebody said on Facebook or on the group page you know, like how much do you engage in those conversations that people get started. So no I don’t, at the same time there’s been moments of struggle where you have to sit down and say “ok this is what community is about, it is about you can be this person and we can still talk about our kids being friends even though we have the.. We are not alike in a lot of ways.Katie: That part of it is what I think is the most magical. Is when you can actually get to a place where you can be common with people who you are so different from and you can feel connected and familiar with them even though you might never have chosen them but they’re your neighbor. It’s kind of like family but in a different way.Bridget: It is, and it’s not to.. You know to paint this picture there are plenty of people who don’t want to know me. It’s not as if the whole neighborhood is all sharing.. You know there are those people who think a community garden is a waste of space, that’s fine. There were people when we first started who thought we were taking away a place for kids to play, we can win them over or just ignore them. You know they’ll either be won over all with time, I mean its not our intent, it’s not as if we’re hiding some intention other than.. I don’t know if some people are suspicious like “why are you doing this” “what’s your end goal?” And I think they’re have been some people who have asked me that and I was like “um what do you mean? End goal? We’re going to get to know each other isn’t that enough?” But that’s not enough some people just don’t.. I don’t know people have suspicious nature sometimes, sometimes they don’t understand that you can just be doing it. I don’t know how many times Tim has been asked if he is going to run for mayor. He’s not.. Or city council.. Like are you running for something. Some people thought I worked at the school, “well you’re a teacher there right?” “no, no I just live in Bellevue.” But like people’s concepts of why people do things, you know it’s your job to do them versus no this is just what I do for fun. This is my hobby.Katie: Yeah and it.. I think the intrastent motivation behind why you’re doing something or if you were trying to get something out of it even if it wasn’t this is my job or I’m trying to run for city council, if it was something less tangible than that like “I want to do this so I am.. So that people like me so I’m a good neighbor.. I’m going to do this so everyone thanks me and loves me for this garden at the end of it I’m going to be well renowned” so even that gets you in trouble because there are people that say, “you took away my this this or this” by doing it, you can’t make everybody happy, you can’t win everybody over so your motivation has to be pretty.. I would even think it gets whittled down to being just a pure motivation of “the only reason I would do this is because I love it and I want to be with the community. The community doesn’t have to all of it but if some people do and we can enjoy it together than that’s enough. I can see though where that would be really hurtful to be like “but wait a minute, wait I’m not trying to hurt anyone why is this being misconstrued?”Bridget: Why, why would you mock my garden? What do you think this is? But yeah. So you know that’s one of the learning, take your toys and go home or stick it out and see what happens, see who comes around, all things with time. Sometimes its hard at this point to be like “wow it’s been ten years” ten years of growing and what did it look like then, what were the struggles when we started versus what are they now? You know, I think overall the struggles now.. There's not really.. We kind of went over some of the hurdles and now it’s just like I don’t stress about it a lot. You know if people’s expectations when they come to the potluck are let down because there wasn’t a greeter at the door or there wasn’t assigned seats, or whatever they had in their mind when they come in the door they may come and be disappointed because it wasn’t organized enough and they really think it should be organized. And they probably don’t come back and that’s too bad I wish they would but at the same time this is maybe not where their energy is fulfilling, like they would be really stressed out by our lack of..Katie: So loose structure just kind of lends itself to anybody being able to fit in at the same time..Bridget: But there are people who come to the potluck who do not always bring a dish for whatever reason, they don’t cook maybe they can’t afford the meal, nobodies checking at the door. We can all show up differently and bring a different gift and that ties pretty directly to our work right and all that we have done. Not everybody.. The stricter the ways are the more exacting and perfect you have to be. At the community garden it would be really hard for groups of kids to show up at our community garden if you can’t touch this and you can’t touch that and if you step there.. I knew I wasn’t going to organize.. I wasn’t going to manage ten plots and ten people’s opinions on how each plot should look. I was like heck no. That’s one of the things garden managers.. Community garden managers do.34:22 – 36:18Katie: Ok so it has a lot of your spirit in it and whatever community effort is built has the person who starts it spirits in it. So let’s take it back to Starfire’s work real quick. Where is this type of community building that you do in your own life where does that show up in your work at Starfire and how is it influencing your work with disabilities one on one, do you think you’d be able to do some type of job if you weren’t doing this at home?Bridget: Yeah, I think I could. I can definitely.. I know I believe in the community building work. I know it, I’ve seen it I’ve lived it in my own live and seen how if we had not changed or shifted what we were doing around our own neighborhood I don’t know what our kids would be doing. Because of how we’ve shifted and lived I know that there is a lot of good things a lot of potential out here for communities to build up around. So I think that helps motivate the work but I think I could do it even if I hadn’t. I wouldn’t quite understand all the ins and outs I wouldn’t have had the experiences to understand or think through some of the things but some have probably played off each other too.Katie: So your work at Starfire has kind of informed your role in your neighborhood and vice versa?Bridget: I would say it has.Katie: Yeah, how could it not.Bridget: I don’t know how it wouldn’t have at this point but I’m sure they’ve definitely influenced each other.Katie: That’s the work life blend I think that was talked about at the beginning of this change at Starfire. It’s not that we have to take our work home and do our work at home it just means that our work is actually is a way of life and we do it everywhere. We do it at our work but we don’t clock out and go home and be sucky neighbors because it kind of just influences the way you live everywhere.36:19 – 38:14Katie: Why do you think it’s important for you to do this work in people with disabilities lives?Bridget: Well I think the.. What I’ve seen in our own world and I think with some of the people that have started projects as families too is that it kind of spurs on the next thing. So by starting something it kind of opens another door, it’s a ripple effect of all of it. So I think that is somebody starts something in their neighborhood and then you know you don’t necessarily have to do it all, there will be other people who are motivated to something else then maybe you just show up to support them or tell them they did a great job later on. It’s not you for everything, but I definitely think for more people to know each other is good for everyone, for sure.Katie: So what is your hope for the next ten years, in the next ten years, let’s say ten years from now what is your hope for Bellevue?Bridget: I think that’s pretty hard because I think Bellevue is pretty great right now it doesn’t need to change anymore, but I’m sure there will be change in ten years and hopefully it will all be good change. My hope is that it is just a welcoming happy community for everyone and continues to be that and in ten years my sons will then be young adults will want to be there too. That this is a place where they want to be and feel as strongly connected to as they do now.Katie: And maybe carry through with some of the work that you guys have set?Bridget: Maybe I can’t imagine.. In their own way they’ll be doing something else. I have no doubt they'll be doing something.Katie: Maybe they’ll run for mayor. One of them will run for mayor.Bridget: No, well maybe who knows. We’ll see.Katie: Alright well thank you, I appreciate it.Bridget: Thank you Katie.
Winging it: with The Stauber Family
Scott: One of Kyle’s big interests is birds. So what we did was created a birding weekend, and invited a bunch of guests who were connected with the Audubon Society, Cincinnati chapter, Cincinnati Bird Club. People along that line those who share the same interest in birding as Kyle does.Katie: Yeah and this interest in birding is more than just - I like to be outside and in the woods, right? Tell me about that interest that Kyle has and what that looks like.Tammi: When Kyle was born we had two acres in the woods and my husband is the biggest Audubon-nut known to man. And we had every bird in our yard. So Scott had all these CDs from Audubon and from Cornell University of bird calls.Tammi: What we didn’t realize is Kyle’s gift is audio memory and at age 2, age 3 he was putting those CDs in our old stereo and memorizing, we didn’t realize, he was memorizing all those bird calls by track. We’re thinking three hundred, four hundred, or five hundred bird calls he has memorized, and he still knows them to age 20. Katie: That is incredible, I didn’t realize that it was something that started that young. So when you chose what to do, you were thinking around Kyle’s interests. Why were you looking at Kyle’s interest in particular?Scott: Well we want to get him integrated, involved in the community - trying to link him up with like-minded people. People with the same interests, shared interests.Katie: So let’s unpack how you came up with the idea to eventually have a retreat, what was your initial concept around what you would do?Tammi: My initial thought was a running event, Kyle ran cross country in eight grade and he wants to run again. But Scott and I don’t run long distance. So I thought I thought we would set some kind of annual running event. And that was mom, all on my own, in my own head, I get caught in my head.Katie: What do you mean by that? Why was it like being caught?Tammi: When we came to Starfire and started learning different strategies. Taking people to lunch, taking other runners, birders, artists, taking even neighbors, just taking people to lunch and pick their brains, I just call it getting out of my own head.Scott: Yeah the cool thing about some of this was when we first started thinking about this we thought well we can do this, we can do this with no input from anybody else you know we’ll come up with the idea and then we can help execute. And then talking to a particular person at Starfire we were told to just talk to people, see what they think and let them kind of run with the program. Don’t plan everything for yourself, this is not about you, this is about Kyle integrating into the community. Don’t even make the event about him, just make an event of which he is an equal part of and let people volunteer and get the buy in from that.Katie: How important do you think those coffees were and those plannings were over time?Tammi: They were critical.Scott: Critical that’s the word I was thinking too.Tammi: It was fun and it was critical to get everyone’s feedback and to brainstorm with others. The synergy of getting all our ideas together.Scott: Yeah, simple conversations and getting buy-in, otherwise you’re going in cold asking people to do something when they don’t even know who you are. It just, you have to.Tammi: And we took a few birders to lunch and they said, well why don’t we rent a cabin out in rural Adams County and go birding? And that had never crossed our minds. Scott: And then all the pieces, well what would we need to do for this and this and and it just kind of fell in place in some ways. It still look a lot of planning.Katie: And did it fall in place because the people who helped come up with the idea were helping with some of the logistics and thinking through what to do?Scott: Yeah.Katie: Some shared ownership there, and that’s kind of what you were saying that you might get caught in your head, that the original idea didn’t have anyone else owning it and so that’s the shift where some other people being part of this and feeling just as passionately is what drives the whole ship.Tammi: Absolutely.Katie: And then so everybody who participated in the planning of it how did you work with their schedules to make sure they were involved?Scott: Our event was more of a regional draw, it’s not people who live on our street. So our meetings were one on one, they were through email, phone calls things like that. It wasn’t like a collective group of people meeting all the time. Turned out there was a bigger interest than we really kind of expected so we had to kind of pull back on it because the place we were getting for the weekend wasn’t large enough to hold everybody. So their enthusiasm made things so much easier. The worse thing you can do is throw a party and nobody shows up.Katie: That’s really neat. And what was Kyle’s role in the project planning itself?Tammi: Excellent question.Scott: I won’t say Kyle initiated any of the plans himself, what we would do is we would always ask Kyle if he wanted to do this, get his sign-off essentially.Tammi: Is it ok to have a sleepover with ten people in a cabin? And he would give us a thumbs up or thumbs down. He would come on all the lunches with us or the coffees we would have with people.Katie: Once you came up with this idea together and you landed on your theme, you came up with what you were going to do, you probably set a date, picked a location, were there any other things logistically that you really had to work through that were big parts of this?Tammi: We had to watch the weather, and it rained, which actually turned out to be a good thing because the birds like the rain.Scott: Yeah, it was migration season for the warblers, it was in May, so a nice spring rain kept them calm and singing.Tammi: Picking trails that were accessible and worthy of seeing lots of birds. Picking a trail that was near a lunch picnic shelter, because we provided lunch.Katie: Did anything come up during the process where you felt like, oh no this is never going to work?Tammi: Oh big time.Scott: YesKatie: Can you name a couple of those?Scott: Well, we had a spot all picked out, it was an hour and a half east of the city of Cincinnati, and was it a week or two before? They said, there’s — I’ll just call it an environmental issue. They had some wild animals on the premises, and we cannot have you come to this. Katie: What type of wild animals?Scott: Feral hogs.Katie: Oh of courseScott: Feral hogs were loose on the property and we need to trap them and we can’t have humans at the facility because it’ll spook the feral hogs. So we had to scramble, Tammi actually did, scrambled and found a place that we then rented for the weekend.Katie: That must have been just.. How did that feel, gut wrenching?Scott: (Laughter)Tammi: Gut-wrenching except that the rental I think turned out to be a better option for us.Katie: So it was a good thing, hogs feral hogs who would’ve thought can actually be the best part of your project?Scott: Yeah and then we walked into the place we rented and the first thing we see is the mounted head of a hog on the wall, and I was like, this is perfect, it was meant to be.Katie: So take me to the day of the birding event. It sounds like a lot of the planning happened with you all and you were the connection but maybe having everyone in the room at once was kind of an exciting thing. Where everybody’s like, now we’re all here. Tell me about the day, how did it feel?Tammi: It was May and it was rainy and we all met at a trail head and that’s how we got our day started with a hike.Scott: And we turned the hike procedures and all that over to one of the birders, who was familiar with the trail. So they led the hike and we just participated like everybody else.Tammi: It was exciting, everyone showed up.Scott: Everyone showed up.Tammi: We had 17 on the hike and I think 14 came back to the cabin for dinner. That was exciting to finally get inside and out of the rain. We had a lot of fun stories to tell. And then ten people, that’s the limit on the cabin for spending the night, so we had ten conversations to midnight.And what Scott and I noticed too, Kyle being such a (I don’t want to say expert) but the audio memory, he can hold his own in that group of experts.Katie: Were they impressed by the level of knowledge that he has?Tammi: Absolutely.Katie: After all this your goal to help Kyle get more integrated into the community, and also as a family to connect more socially with people who share the birding interest, what has happened since? What is a result of this project that you want to share?Scott: During that weekend one of the activities we did was we had a little contest where we would play a bird call and the avid birders had to identify what the bird was. We had fifteen birds and Kyle ended up winning the competition. It was pretty cool in and of itself. Then a few months later there was a bird outing, and the person that was leading the birding walk - we had never met. And when we introduced ourselves to him he said,“Oh Kyle I’ve heard about you, you’re the one who knows all the bird calls.” So we decided to take him to lunch just to make the connection with him. Over lunch he said he would like to do that, he heard about the birding weekend, he actually knew of the place we went and said that was one of his favorite places to go birding ever. And he would like to do that same weekend if we’d be interested in doing it with he and his buddies. So great yeah, we’ll do that. And then at lunch he decided I have about an hour, I’m going to go birding, Kyle would you like to join me? So we all went birding and it was kind of interesting because Josh kind of took Kyle. And they went birding and Tammi and I were kind of behind them watching it was pretty cool because it all came out of the birding weekend. It was that connection, he knew about the weekend, he knew about Kyle’s skills, he knew of where we went birding, it was just this perfect puzzle that was put together.Katie: And you didn’t even have to put that out there?Scott: He did it all. It was his idea, and it’s his guest list, so we’re connecting Kyle to a whole other group of people he didn’t know before.Katie: That’s incredible, thank you guys anything else you want to say?Tammi: Well, I was going to say, I felt as the non-birder, you know the big let down after the big weekend… Birders all go away for the summer and I thought, oh my gosh we did all of this and there’s no connection. And then a month later they go on that hike and then — there’s Josh.Katie: Pretty awesome.Tammi: It was awesome.
You're Never Ready - with Mieke
TRANSCRIPTION 0:00 – 1:00Mieke: You’re never ready. There are some things you just can’t predict everything. You can’t know the end from the beginning. You just have to trust that it’s ok to not know what you’re doing and get started at the same time.Katie: What if there were a bigger story than disability? You’re listening to More conversations at the center of the movement to build connection and belonging in an age of isolation. Ever felt stuck? Or like you don’t know where to begin? This conversation with Mieke will help you conquer some of your own doubts around just getting started. Mieke is part of Starfire’s initiative to put families at the center of community building, this means she was granted a small stipend and offered a mentor from Starfire to help nudge and uncover her families own wisdom around building community. So she’ll address some of her own struggles of getting started with this family project in her neighborhood. Like expanding her concept of who her neighbors might be.1:01 – 1:58Katie: And her epiphany about how to bring her four kids passions together in one project. She’ll also talk about how she leveraged some of her weak ties or people she already knows to help with the project. And some of the tools you might need to get started. If you listen to the podcast with David Shu you’ll recognize the quote at the end by T.S. Eliot “For us there is only the trying the rest is not our business.” So let’s get into the conversation. Alright do you want to introduce yourself?Mieke: My name’s Mieke and I have been passionate about community building pretty much since forever. I was the kid who was the bridge between friend groups in elementary school, I got voted most outgoing in my high school class of 307 people and I have just always been about bringing different groups of people to the same table.1:59 – 3:12Katie: Yeah, and that’s very true. I know you personally as well and I know that that’s been my experience with you. So your high school classmates - they had it right. So one of the questions that comes up a lot about community building and trying to do a creative project in your neighborhood is that starting is the hardest part and for somebody like yourself, it sounds like you’re more outgoing, so help people who might not be as outgoing, also bring them along in this podcast, so they can get a deeper understanding of what ittakes. Because I don’t think this is just for people who are outgoing, do you?Mieke: No, definitely not.Katie: Ok, take us back to when you first started your project with Starfire what were some of your first steps?Mieke: The hardest thing about getting started for me was that I didn’t feel like I was owned by any particular geographic neighborhood. I feel like I belong to Cincinnati, and I wasn’t sure how to narrow that down.Katie: So your project really started around that problem that this is supposed to be a way to activate my neighbors, but what you kind of had to come around to or learn was that community could be a community of interest, is that right?3:13 – 4:09Mieke: That’s exactly right. So that was my first struggle and I struggled with that for like five or six months. We walked our neighborhood, we looked around and we looked at the community bulletin boards and looked at the rec center and met people and I just still did not feel like that was what we wanted to do.Katie: And you had said that was a neighborhood you had newly moved to?Mieke: Yeah, and so just kind of first problem expanding my concept of who my neighbors are and realizing that it’s ok to do a project on a community of interests rather than a geographic community.Katie: So once you landed on that how did you come up with that community of interests?Mieke: The next big problem that I had was that I was very involved in a lot of this community work in Cincinnati but I was doing it without my kids.Katie: And you have how many kids?Mieke: I have four kids.4:10 – 5:12Mieke: From 10-17 and they all have very strong opinions and a lot of varied interests.Katie: Ok, so each child had their own thing going on?Mieke: Yeah, a lot of our time is spent going in different directions. And so I would say another big hurdle I had to jump over was how do I bring it all in guys, coach mom at the helm here trying to figure out what we’re going to do as a family and how we are going to combine all the things that everybody, exploring everybody's interests and bringing everybody back to the table together. So that each kid can feel some ownership of our project.Katie: Yeah, I think it’s really interesting as a parent to do that because you do, you end up, well this child likes ballet and this child likes soccer, this child likes crafts and this child likes theater. So you end up doing things very separately and in their own age group. So then to bring it all back together and say we are going to do something as a family, was that more effort in the long run to have everybody come together or was it more efficient with your time?5:13 – 6:29Mieke: I would say having a central focus point for what we are going to do with our project did end up bringing the kids all together which did make it somewhat more efficient. But the fascinating part to me was that the project that we picked had so many different tasks. We had a master tasks list and each of the tasks built on each kid’s strengths. One kid could really care less about art in some ways but he took on the role of you know I’ll walk the stuff over to the venue and I’ll walk my youngest brother over to the venue and I’ll help by transporting things and carry things. Which was really helpful because I don’t have a staff I don’t have administrators, or secretaries or anything you know, I could use about five. And you know another kid is very creative but very picky so I said well you can do all the décor and you cann design the space and she was ecstatic about that, that’s in her wheel house. I guess what I’m trying to say is the project ended up having lots of little tasks that played to each kid’s strengths which brought them all around the table in a way that I did not expect.6:30 – 7:29Katie: Yeah, and I love the idea of having really intentional invitations for your children to participate but also anyone who is getting involved from the community, you have that mind set of: ok where are they going to thrive and how is this going to feel energizing for them so it’s not a chore? And definitely coming from a mother/parent asking your kid to do something often sounds like a chore but you found a way to make it this fun thing that they did together. So tell me a little bit more about your project, what exactly you guys ended up landing on.Mieke: I had been meeting with my mentor for this entire time at a café in our neighborhood and it turned out that being at that café every month ended up being the open door for my daughter to get a job there. So then my daughter started working there and we became friends with the owners, and made community for ourselves in this space and then one day our mentor said why don’t you hold an event at this café? You’re friends with the owners already, they’re open to doing cool stuff in their neighborhood.7:30 – 8:29Mieke: So we ended up saying what can we do that is a community event that gives back some kind of creativity opportunity to the kids in the neighborhood, our friends, the people that we know. We wanted to do an event that had mindfulness, art, music and food. And we ended up inviting some artists, we invited the pop-art truck, my friend Janet owns that.Katie: And you had not known Janet as a friend when you reached out to her right, because you guys had known each other as acquaintances and then you reached out, how did she take to that invitation?Mieke: Yeah, she was thrilled. She was super excited, I told her what my budget was she said she would make it work. At first with my mentor I was brainstorming, I could put out a call to artists, I could put out an ad and then it was like, stop, think. I already know people.Katie: So you had the pop-art truck, you had a woman from the Hive.Mieke: Yes, there’s a woman whose an art teacher who made art journals with people, like these little made out of one sheet. Then my youngest son is also an artist, and he taught origami at this table and just him being able to you know use his gift of creativity to do the actual teaching which he thrives in. Having him have his own space you know, where he felt respected, was huge for him.8:30 – 9:29Katie: And he did awesome, at ten years old I was super impressed.Mieke: He was nine at the time.Katie: Ok, yeah not even in double digits and he mastered me in origami I could not do it.Mieke: He’s pretty amazing at that.Katie: So do you think for people who are just getting started and they might not have the vast network that you already had, do you think one of the steps might be, who do I know who knows a lot of people and going out to find that super connector in their life who might be willing to reach out to their network?Mieke: Yes, I think that makes a lot of sense, because you are your own best resource.Katie: Yeah, and it seems like what we tend to do right now is I’m going to go online, I’m going to Google it and then you just don’t have that personal connection to really start with.9:30 – 10:33Mieke: Right. And I think don’t minimize the fact that no matter how young your kids are, they have ideas, so don’t lose sight of your own household as a source for ideas. Even for somebody like me who already has so many connections, it’s like, I have so many other things on my plate, this is for the benefit of you, the benefit of your family, the benefit of your community. There’s nothing to feel guilty about or feel stressed about, it’s a win win.Katie: Yeah, because we can definitely put a lot of pressure on ourselves to be the ideal of what we have in our minds.Mieke: Exactly.Katie: So how do you know when you’re ready to jump in?Mieke: that’s a great question. I think of it a lot of times as how do you know when you’re ready to start a family? You’re never ready, there’s some things you can’t predict everything and you can’t know the end from the beginning. You just have to trust that it’s ok to not know what you’re doing and get started at the same time. Things will happen almost organically and dare I say magically.10:34 – 11:30Mieke: It just kind of happens and you don’t have, there’s so few things in life that you are actually are ready for before you do them, but you just do them anyway.Katie: What’s the magic?Mieke: The magic is you already know people, you have a family, you have a community, you just haven’t really stopped to think about it. But it’s already in you. Literally you are the magic. You bring you to the table and everything else happens. You are the only tool you need.Katie: So it’s that simple? You don’t need some master chart that you hang up on a wall, it’s within you?Mieke: 100%.Katie: Mieke that’s too easy.Mieke: No I know, well let me just tell you a little secret. I did buy this big wall chart, it happened to have five rows and we have five people in our family and it had all the days of the week and it had all these little post it notes. I lost it.11:31 – 13:30Mieke: And then I replaced it, it arrived from Amazon and then I lost it. Basically there are no tools.Katie: Clearly it wasn’t being used enough if you’re able to lose it. Well I think that’s really important because sometimes tools can get in the way of doing what is hard. And it’s not to say that tools are bad or that they don’t come in handy for some people but the point is that there is no magic thing that’s going to get you on that track.Mieke: I mean I think everybody has all the tools that are needed just kind of built into being an adult in this world and you just keep putting one foot in front of another and you keep going down a path and it ends up being something so much more special than you set out to make it.Katie: Well let’s end on this quote then, from T.S. Eliot “For us there is only the trying, the rest is not our business.”Mieke: It’s good.Katie: What’d you think about that?Mieke: In more poetic terms it’s a value that I live by, it’s like I’m not responsible for the outcome, I can’t make people love something that I do or participate in something that I am passionate about but I just keep going anyway. And yeah I think you just have to take the leap, trust that there’s going to be a trampoline under there somewhere and that you’re going to bounce back higher than where you started.Katie: Sounds like fun too. When you put it like that.Mieke: Super fun. I’m all about fun.Katie: Well thank you, I appreciate it.Learn more at starfirecincy.org/familyleadership
Jean Vanier - Philospher, Theologian, Intellectual, Human.
Jean Vanier, the founder of the communities of L'Arche, which welcome people with intellectual disabilities around the world, died Tuesday, May 7 at 2:10 am in Paris, at the age of 90.
Reaching Toward Belonging: with David Hsu, Lynda Kahn, Jack Pearpoint, and Jo Krippenstapel
David T. Hsu is author of “Untethered: A Primer on Social Isolation” [ www.readuntethered.com ] and Head of Business Innovation at the Hollywood-based social impact agency Propper Daley. Trained as a political scientist, he leverages expertise in culture change and systems change to advise leaders across philanthropy, business, and entertainment. David previously worked in strategy and communications at NationBuilder, the software company that powers grassroots campaigns. Prior to that, he was visiting lecturer in international political economy at the University of Pennsylvania and supported antitrust investigations at the U.S. Department of Justice. David is an advisor for Encore.org’s Generation to Generation campaign and created the citywide “anti-gala” Shared Plates for L.A. Kitchen. He holds a B.A. from Duke and Ph.D. from Princeton.Jack Pearpoint [ www.inclusion.com ] is an independent Canadian Publisher, management consultant and catalyst for Inclusion, Diversity, Teamwork and CHANGE! Jointly with his wife and partner, Lynda Kahn, Jack does organizational strategic planning, organizational and operational consultation, evaluation, jointly designed learning and practice events, all in support of people with disabilities and their families, to engage in positive change that honors the gifts and contributions of all. Earlier, Jack, his late wife Marsha Forest and John O'Brien, collaborated to create several person-centered planning approaches such as PATH, MAPS and Circles of Friends. These planning approaches are utilized in organizational strategic planning as well as more individual planning. The collaboration continues now with John and Lynda. Jack's forty years of organization experience include seven years in Africa implementing post-war reconstruction; sixteen years as President of Canada's oldest literacy organization, Frontier College; and nearly two decades as a full-time publisher and presenter. Lynda Kahn [ www.inclusion.com ] is a co-leader with Inclusion Press International, Toronto, working with individuals, families, organizations and governments interested in positive change. Her 40 years experience has taken her from institution to community settings, involving values-based person-centered planning as a means to facilitate individual and organizational change. She is passionate about leadership, change and personal engagement to realize a more just world where everyone's voice and gifts are welcome. Lynda, together with her partner and husband, Jack Pearpoint, works with individuals, families, organizations and governments interested in positive change through facilitating conversations, planning sessions and offering training workshops. She is a member of the board of the Marsha Forest Center on Inclusion, Family and Community. She served as the state of Rhode Island's Executive Director of the Division of Developmental Disabilities from 1996 to 2005, serving in the public sector for 24 years. Her work included assisting in the closure of the state's institution, The Ladd Center in 1993, collaborating on an individualized funding and budgeting approach for persons served by Rhode Island's Division of Developmental Disabilities, and serving as President of the National Association of State Directors of Developmental Disabilities Services (NASDDDS 2001-03), and on the Association's Board for 8 years. Jo Krippenstapel offers facilitation, consultation, and training focused on enhancing quality lives for individuals, more responsive organizations, and richer community life. She has worked as an independent consultant for over 25 years. She facilitates conversations among people served by human services, families, and staff in order to support teams of people to learn and take action together. She helps organizations engage in planning that strengthens capacity to identify and act on the vision and mission. Her life path has been strongly influenced by the experience of growing up as one of seven children, the oldest of whom has significant disabilities. The commitment of her parents to create a full life of participation and belonging for her brother continue to inspire her to this day. Jo has lived and worked in five states – offering her the opportunity to learn from and work many leaders in disability services. She now lives in Bellevue, Kentucky, near Cincinnati, Ohio where she works and is involved as a citizen in several community building efforts. Jo can be reached at JoKripp@cs.com.More about Starfire www.starfirecincy.org
Live Storytelling: Saying “Yes” to More
These are real stories, told live, around the theme of “awakening.”Find the full transcript here: https://www.starfirecincy.org/cincibility/2019/4/25/carol-storyteller
Live Storytelling: An Employer's Evolution | Sean Barnes
These are real stories, told live, around the theme of “awakening.”Find the full transcript here: https://www.starfirecincy.org/cincibility/seanbarnes
Live Storytelling: Living in the Moment | Rosalyn and Mary Beth
These are real stories, told live, around the theme of “awakening.”Find the full transcript here: https://www.starfirecincy.org/cincibility/04-09-19/live-storytellers
Snapshots
One of the more challenging conversations we’ve had at Starfire over the past year is the importance of storytelling and the delicate line we must tow in telling someone else’s story. The question of “who holds your story” tugs at me and is especially important for nonprofits to consider. Are we crafting people’s stories to fit our own purpose? How do we, as nonprofit leaders, as social media marketers, as fundraisers and donor relations professionals and grant writers, as public relations professionals, share a story that is honest and truthful and respectful and genuine? How do we tell the truth of the matter, give real life context, without violating the depths of someone’s personal experience with trauma or pain?
Remembering the 'Boys' in the Bunkhouse - Four Years Later
This past December, the Trump administration announced that they will be revoking 25 legal guidance documents that interpreted and explained a wide range of federal laws, including a guidance letter written in 2016, protecting the civil rights of people with developmental disabilities. The administration stated that these letters "improperly went beyond explaining existing laws, and instead essentially created new rules."
"Safety" | with Tim Vogt
TRANSCRIPT:Katie: Can you start us off and talk about what does safety get sold as in the service system today?Tim: They’re selling us an idea of safety that nothing will ever happen to us. And what they’re doing is they’re trying to provide a cover for families and communities to say, “Great you’ve got it take care of it thank you.” We just kind of believe that there’s a balance. That there are some services that can provide some degree of safety. But we just don’t believe that that’s the only form. And that’s where we have the question of well, “Who’s got my back? Who’s making it more safe for me and with me?” And the thing we think about at Starfire it’s a great quote is that safety comes from the presence of many capable, caring glances. We need to be in the presence of a bunch of people that know us and see us and love us. And that’sActually what keeps us safe it’s not the locks on the doors it’s not the security systems it’s not the management requirements of the Medicaid system or the policies of the group home or the day program or the segregated farm that says they’re going to do this that or the other. None of those things actually provide true safety.K: Yeah, I mean if we all wanted to live in the safety that people with disabilities have to live in, which is the safety of basically the State and policies, it would look like a military state. You know, it would look like people going, patrolling up and down the streets and us having to lock our doors at a certain time and all of us being sort of trapped in this really sterile, scheduled out environment and nobody would want that.T: It’s always safer with more people.K: Yeah.T: So that’s the design of Starfire’s work that’s intentional. That true safety comes from a form of love or a form of affection and care. It’s a shared obligation, it’s a reciprocal relationship. I look out for your best interest because I care about you. And you look out for mine because you care about me.K: So… in front of me is a book called christmas and purgatory and I’m going to read a quote. It says, “Some of mankind’s most terrible mistakes have been committed under the spell of certain magic words or phrases.” This book is filled with graphic and disturbing pictures of an institution. I’m bringing this book into the conversation because it shows us the worst of mankind of what can happen when we follow the lure of ‘safety’ over community.IMAGES FROM CHRISTMAS IN PURGATORYT: Well, the book Christmas in Purgatory has always been powerful to me because it is, as you put it, graphic. And it’s also kinda interesting, at least from my perspective, some of the pictures rhyme with the pictures I see even today. In services for people and in the form of our services. It’s not as bad, so that book shows people naked in rooms with dozens of other people without any kind of toileting or any kind of cleanliness. It’s a really horrific kind of doral kind of essay on what was happening to thousands and millions of people with disabilities. But if you took just the form of it, people in rooms without much purpose, you’d largely see that very much alive today. The same pattern is still happening in day programs and workshops and group homes for people with disabilities. That’s really, I think very dangerous because it’s almost like it’s repackaged, it’s the same pattern but it’s got some new color to it and then we buy it. We’re giving them a version of the Christmas in purgatory support system which is here’s some walls that will largely keep out the monsters that we’re telling you that live outside of here but they’re still sitting there in a room with each other doing nothing that leads them outside of those walls. We’re not in the presence of these safe, caring, loving glances. We are at the real kind of mercy of the wardens of the institution, so to speak.K: So are you saying that we haven’t designed anything really new out of the institution? We just kinda designed smaller, prettier institutions when we closed down places like Willowbrook?T: That’s my perspective.K: It seems like the intentions are maybe better this time around.T: I think we are evolving. Like I do think that people are trying to recreate somewhat of a better mousetrap. It’s just still a trap and now we’re stepping into a space in time where our our laws are starting to say, ‘Well are these kinds of places the same as the institutions?’ and people are largely saying, ‘Yeah, they are in function and in form.’ So it doesn’t matter the intention of whether or not, it’s still based on a design and that design is still based on some assumptions that people with disabilities are a them, are a collective group of people. And that’s a dangerous thing because then everybody’s identity is lost. Most people with disabilities that I am aware of and hear about and talk to are in real danger of having no purpose as a citizen of their community. They are simply a client of nonprofits and governmental services and their entire purpose is lost to the world. And I think that’s a big danger that I think Starfire raises and says: ‘What about this person’s purpose? Why was this person born? And what’s the role of the family in a community to discover that, and what’s the role of the support system, service system to nurture that experience?’And I don’t think that it’s bad to have a collaboration between service system and families and community. It’s for me, from my perspective, it’s over weighted toward just the services system and then a person with a disability almost gets kind of sent to this place or places that are gonna serve them and if it’s just to captivate them and keep them safe in our building, the shared purpose becomes clienthood. It becomes we all are in this building because we all have some sort of need that’s been defined by our medical records or our doctor’s evaluation. So volunteerism could be we discover purpose together as citizens and that’s what would build that kind of safety net of relationships that well I look out for you because I care about your purpose and I care that your gift to the world would be missing if you weren’t here.The biggest danger from my perspective is nobody’s talking about this. We say “it’s their choice to be segregated” and in that case let ourselves off the hook for even addressing the complexity of the issue. I think that’s why Starfire’s story is so powerful. It’s just more honest. We’re talking about the complexity of things versus selling everybody on the idea that we can solve all your problems.The most egregious examples I have of people with disabilities being in trouble is where there were very few people looking out for them. There was a woman who was being prostituted. She had $100,000 a year in services and the services couldn’t stop her from being prostituted. Another person I know lit a cup in fire in his group home and spent two years in State Penitentiary. He again, had a big waiver, big bunch of money behind him that the service system and a bunch of nonprofits, including Starfire. Both these cases lined up and said we’ll keep you safe. We had three people that I always kind of paired together that came to our dances and our outings. One young man’s mother shot him up with morphine then shot herself up. She’s still alive but she’s in jail for the rest of her life and her son is dead. Another young woman would come to our dances and our outings and her mom laid her down in bed and shot her in the head and shot herself in the head and both of them are dead. Another mother stabbed her daughter who was autistic and then stabbed herself and set the house on fire. All three of those people came to our outings and our programs. They all participated in our dances. They all went bowling with us.And I’m sure it’s more complicated than any of us know. But my question has always been did we fail them by not bringing in more people into that story? By telling them that our dances and outings were gonna answer all of their hopes and dreams and fears, did we take away the complexity and did we let ourselves off the hook for actually inviting in those capable glances that would have said, “Hey it seems like you’re not doing so good, could I spend an afternoon with your daughter or could you and I take a walk and just talk about it?” How do we grow a safety net of relationships – versus services?K: A safety net that looks more like love? Outside of the service system, outside of a volunteer saying, “Let’s go on an outing together and sort of not taking them as seriously as a true friend. When families can see that, ‘Hey my son or daughter is loved,’ that creates safety.T: I think that if I fear being rejected, it’s largely because I’ve had that experience before right? And we know that people with disabilities are rejected a lot of ways throughout their lives. So are their families and if we don’t acknowledge that. Then we ask the question of how do we mitigate against that rejection? How do we build less rejection? That would be really good work but to simply say we’re gonna protect you from ever having to worry about rejection doesn’t actually get at the antidote to rejection. It just takes away the possibility of the hurt coming.K: Let’s address the idea that people with disabilities often need support. Not every person with disabilities has the same needs or challenges but across the board there is a need for support that might look like a staff person, right? I think that what we’re saying here is not to say that someday that the community will replace every need for the service system. Is that right?T: I don’t want anyone to ever think that a friend is going to replace paid support or a friend’s gonna replace family. However, we can’t think the service system is the sole system of support. We have to believe that some people can learn ways to support each other outside of services. So for example, if someone needs a feeding tube, that might lay outside the technical expertise or even something that would be unsafe. We wouldn’t want me to change someone’s feeding tube, I could easily cause an infection or harm to that person. However, there are lot of things we could do together that don’t require me changing a feeding tube. The problem is services own every aspect of a person’s life. I always ask families, ‘Were you trained to have a kid with a disability or did they just fall into your lap?’ They say we just learned. So family members are just citizens that learned the role of caregiver, so that means other citizens can learn. I just don’t like discounting the possibility that citizens can learn these things. So services have to be more creative and individualized so they can consider each individual’s design question. What is the design question that arises from this person’s life? Or their purpose. How might we help support facilitate that is an individualized design question? They also have to assume that someone from the community should and could be in this person’s life in a variety of different ways and the service workers have to own their own limitations.K: One of the last quotes here in the Christmas at Purgatory book says, “The greatest discovery of my generation is that human beings can alter their lives by altering their attitudes of mind.” I think that is a big part of what we’re talking about. If we keep the same mindsets we’re gonna continue to pump out the same story, which is an old story of people with disabilities.T: I think people can do what they want. If they want to recreate the outings or they want to recreate day programs. It’s a free country, right? Nobody can stop them, and yeah there might be people that say that’s a great idea for me or my family member. I mean those just aren’t the people we’re working with. We are working with people that say, “I thirst for a future and I believe in that future, and I’m willing to work with you.”K: How should people change their mindsets about safety? What is the sort of underlying thing you think that needs to just shift?T: I think they just have to start getting out there and meeting people. I think they have to start really believing that there are about thirty people out there that are going to be their future best friends that they haven’t met yet. And the only way to meet them is to start meeting them, and then the only way to get them to be best friends is to start investing in those people. And then just believe in it and act like you believe it and sure enough it becomes true.K: Cool. Anything else?T: It’s complicated isn’t it?
"Work" | with Christopher Kubik
TRANSCRIPT:Christopher: For me personally, and I may not have enough experience to see this clearly, but I am very, very drawn to doing things that people thought were impossible. And for many people we work with their families or themselves personally were told at a young age, ‘you’ll never have a job.’ ‘You’ll never…’ A big long list of ‘you’ll never’s.’ That’s what gets me out of bed in the morning.So this summer was rough for us. A lot of people lost jobs. Because it’s their first job and you blow it on your first job. I remember being fired from the dairy corner down in Newtown.And a lot of times the people we are working with, they’re adults that have not had a real job out in the community, that has nothing to do with disability, a typical job. Maybe real is a bad name.Everyone blows their first job. You got to learn. Its okay. What do you do? Do you never work again? No. lets get another job and regroup and like go at it again now that we learned something. Were going to be able to design a better role next time.Katie: Sometimes when you hear about employment with any marginalized group, it can create this deficit umbrella over them. “Oh, they’re unemployed so that means that they’re needy in some way.” So when you go to an employer, Chris, that narrative that this is a person who has a deficit, and they need you to give them a job to make their life better. How is that a different conversation through your work?C: That’s a great question. The only reason we job hunt for people is because they have on their own said in some way, “I’m interested in that.” So we don’t prescribe a job as a solution. If you take it slow, and build it with being known first, then it can really be actually the culmination of who you are. But when it’s rushed and forced for an outcome, it can really backfire and have really long-term damage.So when we come to an employer we say, ‘Hey, were looking in the neighborhood for opportunities for Katie to work, what do you guys do?’ And then I’ll ask, ‘What are some of the things that you guys are struggling with? Or what are parts and times of the week that suck?’ And then just offer solutions. It’s as simple as that. And then you can think about what if one of the people we are job hunting for can be the person that provides that solution. And what would that look like. And then we introduce the person were thinking are maybe a fit there. But its based on, ‘Will this help your business? Are you willing to have a trail period? Or will you hire this person and we will reconvene in 30 days?’And talk about what’s working what’s not. What can we shift so it will work long-term. And small businesses, if the team is small enough, that is a really easy conversation. And they’re really open to that kind of experimentation. They’re not married to some org chart that they can’t stray from. They are able to look at the things in between and see opportunities. And that’s humbling to see business be like, ‘Okay, yeah lets try it.’I know personally, a job has changed my life for the better. Of who I am and what I am capable of doing. And I see that with the people we work with. Their personality changes in positive ways. They gain confidence and are more comfortable in their own skin. This is a normal thing and it’s also shockingly happening with people who live with disabilities. We shouldn’t be surprised by this. What is a job besides the money? It’s people coming together around a common mission and devoting time and energy in order to get that thing done. And so I think people should be included in that kind of thing.
Happy birthday - times three
The first time we sang happy birthday was right before the gifts. Jessica wanted to open them right away, before the food came. She got a butterfly necklace, a restaurant gift certificate, tickets to a play, a winter vest, and a coffee cup that read, “I love you a Latke.” The second time we sang happy birthday was at the end of the night, when our cheesecakes arrived and a candle was lit. “Happy birthday dear Jessica,” the 8 women sang in chorus around her. “The Queen!” she interjected. We laughed and nodded our heads in love and agreement.
The life she imagined - Kachelle's story
Kachelle said at first, she wasn’t sure about partnering with Danyetta - or Starfire. “In the beginning, I was just a little stiff,” she said about her early days working with Danyetta. “I’m not used to people.” That was two years ago. Today, Kachelle is an active part of her community in Lower Price Hill. Through Danyetta's support, week after week, she can now say she is building the life she imagined - filled with connections to the art world and opportunities to create with others. And because of her new friendship with Alicia, Kachelle has a job as an "artist in residence" at the neighborhood non-profit, Community Matters.
Purple Backpack
Maggie, started school this year with a bang. With literal kicking and screaming and banging on things. What was designed for modern parental convenience, the drive up, open your door, and a nice friendly teacher would remove child from car seat, became a monumental battle each morning. Mostly, the experience left my daughter feeling like she was being abducted by strangers. Every. Single. Morning.
"Time" | with Tim Vogt
Full Transcript:Katie: So, what does it mean to spend a lifetime with people?Tim: There’s a great metaphor from C.S. Lewis in his book “The Four Loves,” where he talks about the difference between approach and nearness, and he talks about this in the context of faith and being close to God. But I think it applies, the way he describes it he says,“I want you to imagine that you’re on a path, and your path ends at a village, and the village has a warm bath and a cup of tea and all your friends are there, and there is a fire and you’re in the mountains and you’re on this path and it’s cold and it’s rainy and your coming to this cliff, and you’re at the top of the cliff, and below you you can see the village where you are going, the baths and the tea and the friends. It’s waiting for you. But there is no way to get to it, you’re near it, you can see it, you can smell the smoke from the fire. But you can’t fly and you can’t climb down the cliff. The only way to get there is a five-mile loop that goes around the whole valley, and actually every step you take for a while is going to get you further from the village, but interestingly enough you’re approaching your goal more than you were when you were near it.”The question really is about what’s the goal. And what it means to get there. When I think about what does it mean, especially in our work in Starfire, to help people grow towards each other, it means more than just being near. The path is actually the thing we have to keep going along. We have to travel that. And time matters there it might take longer, it will take longer. We can’t actually get closer unless we spend a lot of time together. Isn’t that a great metaphor?K: It is.T: Its really helpful to meK: Yeah. Why do people have a hard time committing to a long-haul?T: Well I’m really interested these days in what happens if we don’t have to commit to it but we just continue travel together. Because, time is just really interested in that, if we go 30 years in the future, and we say we’ve been best friends, or we’ve been married, or we’ve been great neighbors. We’d look back and say, what kinds of things did we do to keep that alive. It was things like forgive each other, and grow separately but come back together, and bring new people in to introduce and celebrate together. We’d have to do all these things that probably require us to be uncomfortable. But when we are in the future looking back, its easy to say: “Oh yeah that’s how it happened,” but it’s hard for us to see it that way. That’s why time matters so much, is that it’s the passing of time that allows all of that stuff to happen.K: Sometimes more time does not equal quality time. So with Starfire we have actually started working less with people, we spend less time with people. And we out in more quality during the week more than maybe we did with the day program days.T: It was just a way we thought about peoples lives and our purpose. Our whole purpose was to almost fill time, and now it is to invest it in that future story, that future goal. We have just come to understand that the time that we have with people with disabilities is sacred. It represents their life. And we spend a few hours a week building that life. A connected, vibrant, life with lots of friends who care about me.K: So you’re saying that the goal you have in mind can determine the way you spend your time. And the goal that we have is different than keeping people safe and happy now it’s a full rich life.T: Yeah, its some what of an understanding, and it’s something to own up to. We didn’t actually imagine the same kind of lives for people with disabilities than that we imagined for ourselves. And somehow we imagined that their purpose was a very finite, you know, existence. That was very much in the present of managing them or just keeping them safe and happy. When we started to say “oh we’ve been thinking about this all wrong. Each of these people have a unique purpose.” Then we had to, one come to terms how we assumed very little was possible for them. And once when we did that, we had to commit ourselves to what was possible. Then we had to understand that’s generally looks like a connected, included, participatory future. But, again its unique and wild for each person. So we had to design our services in a way that use time to get there. When we started to think about what that looks like, it takes a lifetime to build a life so we had to figure out how to invest our time and partnership with people in a sacred way that lead to that future. And allow the space for surprise and new relationships and affection to percolate.K: So that’s that three hours that we spend a week instead of the four days.T: Yup. So instead of four days its three hours of invested time, and the week in between actually really matters, because we become new over that week and the story becomes a little deeper. Week by week it gets deeper and deeper. Its approaches that vision of the future. It approaches that forty to fifty-year story. You can only chip away at that a step at a time, or a day at a time week at a time, you can’t knock it all out in a week or a month. It just doesn’t work like that.
A Family Story
<figure class=" sqs-block-image-figure intrinsic " > DSC_3307 We don't say it enough, but without families, our work at Starfire would not be possible. Every connection made in the community, every new relationship formed, or job attained, families are the ones behind-the-scenes keeping those threads of connection together. In many ways, Starfire's story is the story of every family we support.Families like Joy and Rosie Lawrence-Slater, who believe that every person has an important role in the community. The mother and daughter duo recently shared their hopes and dreams for Rosie's life when NPR's StoryCorps came to Cincinnati. <figure class=" sqs-block-image-figure intrinsic " > Untitled design-3 We understand families are stretched thin. So when 81% of families support our mission by... providing transportation to community events, or following up with new friends to keep the relationship going, or coming to us with ideas for a person's future…we are in awe. That type of support isn't what's typically asked of families from support agencies like Starfire, and we know it's not the easy way. Because of this, it's the support we receive from families, more than almost everything else, that tells us our work is worth working for. This story is part of our Story Series, “The Spark.” Subscribe and get this series in your inbox every week!
A Plan that Came True
A few weeks back, Starfire received an email that reminded us of the importance of making room for "the spark" to happen. It was written by a mother, whose son Kyle used to attend our day program before it closed. Kyle would be receiving his Black Belt in Gumdo (sword fighting) that Saturday, and they wanted to share the news. His mother went on to write that without the initial connection that Starfire made seven years ago - between Kyle and Paul Korchak (Founder of the Cincinnati Taekwondo Center) - his dream of attaining a Black Belt might never have been realized."I like my martial arts training and I look forward to going to class each week. Each skill is hard at first, but it gets easier the more I practice. My classmates have helped me learn so many moves and they have been great teachers. Ms. Knarr is nice and encourages me to do more. I enjoy most of the things that I have learned. I like to be a fighter with good moves and kicks. I really like to combine my fighting skills to make special powerful moves which include; a power attack, flashing punch, and double kick. I don’t like sparring as much because I am afraid someone will get hurt, but I like to work with my swords, because it makes me strong and builds muscles."-Kyle <figure class=" sqs-block-image-figure intrinsic " > IMAG1105 As part of Starfire's shift in those days toward more person-centered, community-based work - we saw that Kyle's love of martial arts might be a natural and meaningful entryway into community life, and spring him out of our day program. So, our staff invited Master Korchak to attend a PATH (planning session) that would focus on Kyle's hopes and dreams around the martial arts. Asks to the community in those days were something new, and often felt awkward. Will he come? Will he understand how important this could be to Kyle's life? Will he be confused and ask questions I'm not sure how to answer? Going about the ask itself was a practice in faith. But to our delight, Master Korchak accepted.And then it happened. At the PATH, Master Korchak extended the invitation for Kyle to come check out his class, and Kyle was obviously excited. This was the best outcome anyone could have hoped for. Without anyway of knowing in advance that it would happen, there at the PATH we saw a "spark.""During Kyle’s childhood he participated in a number of different sports: Swimming, soccer, and baseball, but all of them were segregated team sports and none of them has provided Kyle with the sense of joy and accomplishment that he feels with his Gumdo training. The bar is always being raised, there is variety, plenty to learn, and he can learn at his own pace."-Jenny, Kyle's motherHere's Kyle during his Black Belt ceremony. <figure class=" sqs-block-image-figure intrinsic " > IMAG1110 "It did not take long before it was clear Kyle’s interest in Taekwondo was becoming a passion. Kyle was hooked, and it was exciting to see the joy his classes gave him! Kyle’s love for Gumdo and the martial arts has been transformational! Kyle has developed a passion for the martial arts, which has improved his self-confidence, given him purpose, to be the best warrior he can be, and has allowed him to grow in a community that accepts his differences. We thank everyone who has help make his PATH, a plan that came true."- JennyReceiving an email like this one is a part of our story we don’t always get to tell. We often make room for "sparks" to happen, and they don't always ignite. And even sometimes when the do ignite, we don't see the whole story unfold because people like Kyle, his family, and Master Korchak have figured out a way to carry on that spark for years on their own- outside of Starfire's or some other service's support.Stories like these take a measure of serendipity and courage to shift course and try something different. At first the different path feels riskier - and less sure-footed than the typical "disability story" would offer. It takes guts to shift perspectives from believing who someone is based on their label of disability, and instead build a new story of who they might become: a Black Belt, a classmate, a community member, a friend. <figure class=" sqs-block-image-figure intrinsic " > Kyle Vorhees.jpg <a role="presentation" class=" image-slide-anchor content-fill " > <a role="presentation" class=" image-slide-anchor content-fill " > <a role="presentation" class=" image-slide-anchor content-fill " > "I am very happy to receive my Black Belt and I will continue to practice what I have learned so that I can continue to learn more forms and skills.-KyleAnd like martial arts, inclusion takes practice. It starts by making that first invite to the community, building a plan, then sticking with it year after year. Then, even when we've reached some ultimate goal - we continue going back to the fundamentals, inviting and building, knowing that with discipline and heart the rewards will pay out over a lifetime. This story is part of our Story Series, "The Spark." Subscribe and get this series in your inbox every week!
“The Spark” | with Tim Vogt
Katie: So, tell me about a time you saw a spark at Starfire.Tim: There was a young man that was coming here, Kyle, and he would walk around our day program, and he would walk in a very different way. He would turn his toes inward and make these sideways steps, and he would kind of walk around corners very intentionally. And, I remember, at the time we had a few staff who thought this was a really big problem – that he was acting strangely or it wasn’t appropriate. One staff, a guy named Jon, had noticed that this young man had kind of an interest in martial arts, in ninja-kind of stories. And Jon actually noticed that what Kyle was doing was not strange or weird, it was actually a form of martial arts.So, the first spark was the noticing of that staff, saying, “Huh? I wonder if this isn’t just weird or this isn’t just strange or this isn’t just a behavior problem. What if this is an intentional clue into who this person really is? Maybe this is one form of communication of who they think they are and who they were born to be.” As a result, another staff started to invite in a local martial arts master to teach for the reason of cultivating this interest that was noticed with this young man. So, Kyle gets an opportunity now, because of these two staff, to be in the presence of somebody who could be a mentor, or a sensei if you will, to his unfolding or emerging identity around the martial arts.A few months later, Kyle is having a planning session. His family is coming and our staff are gonna be there. We’re thinking about who is Kyle. And, Bridget says, “We should be inviting Master Korchak, the martial artist that had been teaching the class. He should come and help us think about Kyle’s future.” So again, here’s the next spark, the idea that Master Korchak is not only here to teach about martial arts but he might come to a meeting to help us all imagine what Kyle’s future could look like. And he carries a really interesting part of it, which is this interest, a passion that Kyle has for martial arts. And he knows a lot about that, he’s dedicated his whole life and career to this. So, he’d be a logical person to invite in.So, in the planning session, they started talking about martial arts and when it came up that Kyle was interested. And the whole circle, everybody in the room – the family and our staff kind of came up with the idea that there’s some Special Olympics classes they could explore around the martial arts and that’s a legitimate thing for people to think of. However, Master Korchak said, “I think he could do my class. I do it every Monday and I think he could come. He’s already good enough to be a part of that. It’s a self-directed journey for everyone that’s in the class, and Kyle’s got enough of an interest and enough of capabilities to participate.”So, right there you see another spark: validation of Kyle’s passion by an expert in his field, and an invitation out of the disability world, or the special world, and into the regular world, the regular martial arts class. And that really helped that family, I imagine, that everything they believed and knew about him, which is that he deserved a full life and a community was actually true. That there was somebody out there who believed what they believed. So again, you see this fanning of the flames.So this was 2012, when all this happens, and Kyle starts taking these classes, and we just received an email about a month ago that Kyle has his black belt in gumdo. And that’s actually a story that we’re gonna share next on this series. It took a lot of people to hold the flame of his passion. Kyle, himself, of course, insisting on a life that relates to martial arts. It was our staff, the paid people in Kyle’s life, people in the martial arts community, as well as it was his family. So, it was everybody kind of acting with intention and helping this thing to move forward.That’s one path, is what happens when a bunch of people keep contributing in little ways over time. Also important to notice, is how very fragile each point along that journey is. Is that it could have been smothered by the doubt of a staff, the certainty of a staff, the doubt of the family, the fear of a community member, lack of ambiguity from Kyle about where does this even go, why invest in this. So, there’s so many places along the story where it could’ve all fallen apart. To us at Starfire, the biggest tragedy would be that a story like this would be lost. And, we actually think that this happen an awful lot. People’s stories get lost because we’re not fanning the flames, and we accidentally smother the points at which these kinds of stories and lives could emerge. So, we really believe that when you notice a spark, the key is to notice it and then to notice your own doubts or worries or concerns, and then to tamper those a little bit, and provide room for that spark to turn into a flame, to catch fire, to spread wildly in a way that would really ignite someone’s whole community, their whole family, their whole selves, their whole future
The Data.
<figure class=" sqs-block-image-figure intrinsic " > Starfire Cincinnati Data Research Data plays an important part in the fidelity and growth of our work. Tracking outcomes gives us the ability to share our success in a way that looks concrete, less subjective. But data on its own is hopeless. That's why we have stories to back our outcome of "Maintaining connections." This data point looks a variety of ways, such as: lastingfriendships, connections to coworkers, or close neighborhood ties. The basic idea is that we are helping people with disabilities connect to relationships with people without disabilities by supporting them in a role that matters to them.What roles do you have in your life, and how does staying with these roles help you connect to meaningful relationships over time? <a role="presentation" class=" image-slide-anchor content-fill " > <a role="presentation" class=" image-slide-anchor content-fill " > <a role="presentation" class=" image-slide-anchor content-fill " > <a role="presentation" class=" image-slide-anchor content-fill " > This is part of our Story Series, “Staying.” Subscribe and get this series in your inbox every week!
Four years later...
For the past 4 years, Michelle (see video below) has been meeting with a group of writers at a local coffee shop. [youtube https://www.youtube.com/watch?v=8lDU8MDafI8&w=560&h=315]"I like the people, the high energy. People in this group are easy-going and great. In the - 'nonjudgmental' - great." - Michelle Dunford, Write Me, I'm Yours co-founder The group originally connected as part of Michelle's work with Starfire, where they did a writing project together. The project was to engage writers across the city by setting out journals at local coffee shops and inviting people to contribute. They called the project "Write Me, I'm Yours," which is now also the name of their monthly writing group."I'm always the first one there. Everyone has their own unique poetry style. I get excited and nervous when I have to read because some of the stuff I write about can be dark." -MichelleA few things I love about this story.1) They stayed in touch after their project was through. Working on something cool and interesting together gave this group of writers the gift of lasting ties to one another. That's why we spend a lot of our time doing projects just like Michelle's in our work as community builders, it creates bonds that span time.2) The effort is completely community-based and driven by the writers themselves. Outside of Starfire's structure and support, without morphing into a "special needs" writing circle solely for Michelle and other people with disabilities, the group of writers made a commitment - to stay in each other's lives year after year, while Starfire stood on the sidelines admiring. <figure class=" sqs-block-image-figure intrinsic " > IMG_2098 "Michelle is the glue that keeps the group together. Michelle is the core and things don't feel right when she's not there. There is no difference in how we conduct the circle. We don't censor or adjust the agenda. She's an integral part of the group." -Eva Lewandowski, Write Me, I'm Yours co-founder3) They have some pretty amazing work coming out of their writing circle. Here's one poem they worked on together with Cincinnati's Poet Laureate Pauletta Hansel."As far as I'm concerned, although I do blog and write articles, I don't consider myself a writer. However, the writing circle has allowed me to tap into my creativity. But best of all, it's provided me with a close circle of friends that wouldn't have happened had this circle not existed." - EvaStories like this are at the top of our list - as beautiful examples of people coming together over shared passion, and making the most impressive commitment to one another: to stay.p.s. A look back at 2014, when the "Write Me, I'm Yours" project was first led by Michelle![youtube https://www.youtube.com/watch?v=q3nSw7dGsDI&w=560&h=315]This is part TWO of our Story Series, “Staying.” Subscribe and get this series in your inbox every week!
"Staying" | with Tim Vogt
Katie: So, why is the concept of staying important to Starfire’s work?Tim: There is a great quote by Wendell Berry, and he talks about the marriage vows and they are not for better and for richer and for health, they are for better or worse, richer or poorer, sickness and health. He says that in staying we learn something closer to the truth which is that not everything in life is happy, and not everything in life is great. I think people with disabilities and their families that I know, relate that there is a great joy in life, especially when they get included and supported and loved in a way that we at Starfire hope that they could be. That continues to be a struggle for them and their families. So, if we can think about staying in solidarity, and in fraternity, and in relationship with people, we can be with them in that struggle, and it can lead to some good things, but it could be tough, many tough days.I also think that when we think about “staying” we think about that same quote reminding us that there’s going to ups and downs and it might be tempting to leave. Leaving is an assumption that somewhere else is going to be better, but staying seems to be an invitation and a commitment to making this place better or this life better or this relationship better. So staying implies, in the depth of that concept, that I’m not just going to get out of here; I’m not going to leave you or this place. I am going to be here. There are going to ups and downs and good days and bad days, but I am still going to be here. So I think staying through those good days and bad days, and through the struggles and through the joys, and paying attention to the closer you get to the truth of what life is all about, what inclusion is all about.Inclusion is not all happy and fun; it means I accept you as you are.I believe you can do better, but I accept you as you are. And you belong already; there is no need for you to have to earn it or prove that you are valuable, more valuable than you already are, so the idea of stay relates to peace. It relates to rest; it relates to some sort of satisfaction, and it relates to time in a really great way that I chose to commit myself to people, or a place, or to an idea, in a way that just gives the long story a chance to unfold. People with disabilities have a really small degree of imagination of story and imagination around their lives. There is a very short story about disability. It fits in this box and goes here and these people go here and that is what defines their life. So it is not a very big story and if we can stay with people and help nurture and participate in their journey and struggle for a better life, then we can see that there is a better story. You have to stay to see that better story.Katie: Is it important to talk about staying because that isn’t a common reality for people with disabilities for in their lives that people often do not “stay”?Tim: Yeah, I mean, when we look at the people that we support and the people that we love and know with disabilities, we see a lot of leaving in their lives. You’ve got professionals that are in and out depending on their next job, or if they got fired or promoted or left. So, there’s this constant turnover. And if we’re being really honest, we hear that there’s a lot of absence of community and rejection sometimes for people with disabilities and their families. And, an absence and rejection is a leaving of sorts. Right? Like, you’re left alone. We’re outta here. We’re not gonna be with you anymore. So, when you’ve got a disability, you’ve got this turnover almost in your life. Your social stories are very short. People are in it for a few minutes or a few hours or a few weeks or months as professionals, they’re not really in it for a long period of time. So, the counter, the antidote would be staying, the people that are there for a long time.There’s also just an interesting, I would call it a creative limitation, that people with disabilities and their families are inviting us into.A lot of people I know who have disabilities can’t drive. And so, their mobility is limited. They might not be able up and move to a new city for college because college isn’t even an option. Or, they would lose their funding if they moved out of state. Or, the public transportation system doesn’t actually travel between cities, you know. So, the mobility of people with disabilities is really physically limited, and the options of moving about are limited. So, then if we’re asking the question, “How might someone with a disability have a good life?” one of the factors is we that we think the reality is they’re going to be limited in how they move about.So, we would want to develop local networks and really have people who have stayed around them be part of the story, that would have known them for a long time. The last aspect of stay that I can think of that really matters is that staying relates to taking care of a place and the people in that place. So, there’s another great essay that Wendell Berry wrote about his family’s farm and the generations of his family that have taken care of that place. And there’s a, by taking care of that place, they’re taking care of the people around them and of that place too. So, people who take care of a neighborhood or take care of a block, or take care of a city; because they’ve lived there their whole lives, those are the kind of people who create a culture where somebody’s looking after the place and the people in it.And, if we could have more people stay and own the caretaking of places, and root themselves deeply, they would grow big networks, and they would, over time, probably build a culture that was very conducive to the lives of people with disabilities and that culture.Katie: So, last question. Who do you think is called to stay? And, how do they do that?Tim: I think we’re all called to stay. However, I don’t think that any of us are required to stay. There are good reasons for moving on from relationships and places. You can’t afford it, or the person you’re committed to turns out not to be the person that you thought they were, and that’s dangerous. But, I think that the problem is that if we don’t leave the potential for staying open, then we don’t ever invest deeply. We don’t get to know the people around us because we’re already out the door. We’re buying this next house in order to flip it in five years, and move to a new place. So, why would we invest in each other? Why would we care about each other’s well-being? Why would we look out for our neighbors? Why would we bring flowers to the woman whose husband passed away across the street? Why would we, you know, get to know the kids on our block if we’re gonna be gone in a few years’ time? So, the temporary-ness that we start with is key. Or the permanency.If we start with an idea that this might be a place that I stay, and we find out that it’s not, that’s great because the assumption was there to begin with, and we invested as if we were going to stay. I once met a woman who really challenged me on that. And she said, “I was a military kid. I had to move.” She said, “And, I’m still a military wife now.” And she said, “I still have to move.” And she said, “But every place I go, I invest like I’m gonna be there for the rest of my life.” That was awesome and beautiful.She didn’t forego relationships, she didn’t create an absence in the neighborhood or in the families around her by assuming that she would be gone. She actively, intentionally said I’m going to invest, because I know I’m gonna be gone but I still need to take care of this place by investing in it as though I’m gonna live here myself.So, if I’m a person with a disability and I don’t get to move, but everybody around me is flipping their houses every five years, and everybody is of the mindset that they’re outta here in a few years, then quickly my condition deteriorates, and I could be stuck. And, instead of staying, I’m stuck. Everybody around me – no one knows me. No one’s built a great garden that I can be a part of. Nobody knows when my birthday is. And, I’m not a part of their world either.
Integrated Employment Series #2
Read the first part of our Integrated Employment Series here Spencer's Job at Local Donut Shop Danny's Job at his Local Pub "It's good here. I like helping other people. I think it's really nice to see all my friends here. My favorite part of the job is making money." Erika's Job as a Teacher Assistant at a Daycare Mike's job at Custom Cabinetry Business https://youtu.be/PcfX-hyPkg8 Chris' Job at Downtown Bike Share Joe's Dream Job at the Zoo Follow our stories and learn more about our approach to getting more people with developmental disabilities into the workforce where they can contribute!! Instagram.com/starfircincy Facebook.com/starfirecincy www.starfirecouncil.org
A job and a life - Douglas' Story
Douglas is going on his 3rd year as an employee at one of Cincinnati's most popular local establishments, Eli’s BBQ. He also has been working at Fireside Pizza for the past 2 years. Both restaurants are in/around the neighborhood of Walnut Hills, and that’s where Douglas lives. <a role="presentation" class=" image-slide-anchor content-fit " > <a role="presentation" class=" image-slide-anchor content-fit " > <a role="presentation" class=" image-slide-anchor content-fit " > When Douglas comes home from work – you can see the joy in the face, and the connection that has there now. He just glows," Paula, Douglas' mom. Employment is an important part of life in America. "What do you do?" is one of the most common questions people ask when getting to know you. So when Douglas can answer back, "Eli's and Fireside Pizza," you can imagine how working this raises his status in any conversation. Here's a glimpse of what Douglas' first year of employment looked like... https://www.youtube.com/watch?v=txWqXPweqzM&t=10s Awesome, right? But... a job is still a job. A paycheck is nice, but relationships are what make life truly rich. When we can have both a paycheck and a social life, life finds its sweet spot. So after our Connectors at Starfire helped Douglas get settled in his new paid roles, the further step was discovering relationships. Douglas' real, true interest "since he was tiny" is in movies. He might not share a lot in conversation, but when the topic of movies comes up, Douglas has a lot to add. So his Connector began reaching out to neighbors who like movies too. Now, several of his neighbors meet up bi-monthly (sometimes weekly) for movie nights (they all share a particular love for the Harry Potter series). Slowly, these connections have started to show themselves in a "real community" way. This year, Walnut Hills held their annual StreetFest and as Douglas was walking there from his house - he bumped into Anne and Andrew (movie night friends) who were on their way there also. Immediately, they fell into conversation about movies as they carried on their way together to the festival. The simplest moments, like this one, can make all the difference in combating isolation so many people with developmental disabilities feel. "It’s so hard these days to find real community – and here was real community right in our neighborhood!" his mother expressed. "To have these social connections – and to have that feeling that what he’s communicating is being received and understood – he’s really part of a group." Before Starfire, Douglas’ life looked a bit different, and we’re so happy he and his family have joined us on this journey to build community around his passions and in his local neighborhood. Check out Landlocked Social House, Anne and Andrew's Craft Coffee + Beer start-up on Kickstarter: https://www.kickstarter.com/profile/599834529/about
Sam ties her new network of seamstresses to a cause. (Starfire Video)
Sam’s Story https://youtu.be/7vos7fI-ioI Sam: We’re making baby bibs and burp clothes at silk road textiles for healthy moms and babes. This year, Sam organized a group of women to make items for at risk moms and babies and enlisted her zumba classmates to donate baby items. Sasha: I like that it’s staying in the community. You know it’s going to stay right here and help people around us. The best thing about Sam is just she’s so resilient, she doesn’t get frustrated she’s like “okay I will try again.” Bridget: She took sewing classes at silk road textiles and she really enjoys sewing. So we saw this as an option to keep up the sewing skills and also to meet more people that enjoyed sewing Sam: Thank you so much just for coming to help- see you the next time Terry: Sam brings such joy and enthusiasm with her. So she’s part of the fabric of who we are, you know we knit stuff but we also knit community. Sounds kind of cheesy but it’s true. Katie: What are you really looking forward to still? Sam: Helping them out, so like giving them their stuff. What we’re donating. Wow! This is amazing! Thank you! Sam continues sewing with the women at silk road textiles and collecting baby items to donate. March is Developmental Disability Awareness Month. This story is part of NACDD’s ‘Learning Side by Side’ #DDawareness17 series. Follow us on social media to see all of our stories throughout the month! Learn more: http://www.starfirecouncil.org
Quilting Together - Andrea's Story (Starfire Video)
https://youtu.be/BaXQZEX_sgA Maryann: You can present your quilt to Carolyn Andrea learned to quilt in Mary Ann’s home sewing room Carolyn: This is awesome are you happy with it? Maryann: When she saw this quilt coming together she started dancing. I said “stop dancing, and get sewing.” Carolyn: That’s why we as quilters- that’s why we get hung up on it because we now know what the finished product can look like and were like. “Okay keep working, keep working.” Maryann: Does it feel happy that you did all the hard work, all those hard days sitting there sewing and then you saw it all come together? Andrea: Umhm Maryann: And now you get to bring it into this wonderful place to have it quilted. This was a smaller simpler quilt because it was her first quilt and even that quilt was a lot of work don’t you think?It’s been a good experience I’m so proud of her. -- March is Developmental Disability Awareness Month. This story is part of NACDD's 'Learning Side by Side' series. Follow us on social media to see all of our stories throughout the month! Learn more: www.starfirecouncil.org
2019 Strategic Plan: An Update
It's been 7 years since Starfire set out on a plan as an organization to change the way we support people with developmental disabilities. Our goal was to build a model of support that aligned our impact with our original vision: to build richer social lives for people with developmental disabilities. How we've grown during this transition. It's enough to write a book. Today, we've gone from a place that supported people with disabilities on outings and in day programs, in groups, mostly set apart from the richness of ordinary community life, to a culture-building movement that puts people with developmental disabilities (as individual selves) at the very center of community life. Reading back on our Strategic Plan set all those years ago now, it's surprising to find how well each of these statements have held up over time. Not only has each line of this Plan made it through the transition out of 3 segregated programs, a massive flood to our building, and a whole lot of coffees with citizens, funders, families, and volunteers to explain the "why" of all this change, but they have truly served as the guideposts that we hoped them to be. Here, I'd like to share those statements with you, and our progress to date on each one. You'll notice the five categories are based directly off of John and Connie Lyle O'Brien's Five Valued Experiences. Thank you, thank you, thank you for everyone who believed in us to make it this far. *Oh... and please excuse the targety outcome jargon, one of the things we are using this document for is to share with other organizations how we made this transition. Sharing Places In 2019, people with disabilities will share places in their local communities with other community citizens. People with disabilities will be "regulars" at ordinary places, and be known by others. Sharing places will become the springboard for building relationships and making contributions. Recommendation #1: Decrease in the use of facility-based services Targets: Transition fully out of facility-based, group-centered Outing and Day Programs (Dec 2012-2016) Action Steps: Decrease membership in each program gradually until closing date (Sept 2016) Recommendation #2: Increase in integrated community-based employment and day services Targets: Build capacity for providing 300 hours per week of integrated services by trained community connector staff (Dec 2016) Action Steps: Hire staff with desired attributes to be "community connectors" (Dec 2012-present Increase people served to achieve 300 hours per week of integrated services (Jan 2017) Making Choices In 2019, Starfire members will make choices about the levels and ways they connect to Starfire and their communities. Person‐centered tools, approaches and practices will become the standard for people with disabilities to explore options. People with disabilities will create a “safety net of people” that support and stand by each other as they make important choices. Recommendation #1: People with disabilities served complete a person-centered visioning session in first year of membership to Starfire (Benchmark #1: PATH meeting) Targets: 67% of people on track to do a person-centered plan to complete one Action Steps: Families attend and support PATH goals At least 3 ordinary citizens attend and support PATH goals Making Contributions In 2019, people with disabilities will be known as “pillars of the community.” People with disabilities will have many opportunities to find and explore unique ways they can make contributions to their community and other community citizens. Starfire’s success will be determined by how many members fill “valued roles” in the community. Recommendation #1: Increased use of career discovery processes Target: 15% of people served Action Steps: Create personalized electronic profiles to share with Starfire's network Conduct benefits analysis with interested people served as needed Utilize persons served social network to explore employment opportunities Recommendation #2: Focus on the achievement of individual integrated services for individuals with complex needs Target: 100% of people served receive integrated services Action Steps: Each person is supported approximately 136 hours per year around their personal goals and passions Recommendation #3: People served attaining valued social roles (paid or unpaid positions in the community) that align with their interests, geographic location, and strengths (Benchmark #2: Valued Social Role attainment) Target: 80% of people served attain a valued social role (internship, job, volunteer position, etc) Action Steps: Staff support people served in navigating and meeting with existing places and opportunities for valued roles Growing in Relationships In 2019, Starfire members will create relationships with other community citizens who share places, passions and interests. Starfire members will invite people to grow friendships with each other based on mutual respect and affection. Commitment, conversation and consistency will be the foundation for building solid, supportive relationships. Recommendation #1: People build a "network of support" that includes people who are not family, unpaid, and do not have disabilities. (Benchmark #3: Increase relationships to ordinary citizens) Targets: 90% see an increase in their community relationships annually 80% maintain relationships over the course of 12 months Action Steps: Staff support people served in meeting with new people and connections weekly Recommendation #2: Educate and engage families on the work of building stronger social networks for their loved ones Target: 80% of families are reported to be actively engaged in building social networks Action Steps: Partner with local family support organization, Good Life Networks to prop up families in the journey Meet bi-annually to discuss progress in building social connections with staff and person served Recommendation #3: Educate and Engage Ordinary Citizens Target: 200 citizens annually have deeper understanding around inclusion Action Steps: Invite ordinary citizens to participate in community building through projects, social, or volunteer opportunities in partnership with a person with disabilities Experiencing Respect In 2019, membership in Starfire is a way that people demonstrate and communicate that they are committed to building a vibrant, inclusive community. Each story written or told about (and by) Starfire reflects respect for the gifts and contributions of its members. People who join Starfire experience the respect of being valued and appreciated for their capacities and contributions to other citizens of greater Cincinnati. Recommendation #1: Increase in staff competencies and skills related to integrated employment and community services. Target: 100% staff trained on the core competencies of our work Action Steps: Professional development trainings including: Asset Based Community Development, Trauma informed care, Five Valued Experiences Staff attend 3-day intensive trainings on Social Role Valorization within first year of employment Staff attend 2-day summary training on Social Role Valorization bi-annually #olmsteadaction
Integrated Employment Series (# 1) #olmsteadAction
Jobs are an important part of people's lives. Yet statistics show that only 18% of people living with the label of developmental disability are employed in the US (Or said another way, 82% of people with developmental disabilities are not in the workforce). Starfire is working to change that picture. We are doing this by building people's social connections. Landing a job often comes down to "who you know," but the average person with developmental disabilities only has a network of 2 community relationships (unpaid, non-family, people without disabilities). At Starfire, 92% of the jobs attained with our support come directly from social connections, so we know our approach is working, even though it makes us a little different. We don't invest people's time and efforts on repetitive "job training readiness" such as mock interviews, resume building, or piecemeal work. Instead, we help people be "known" for their gifts and passions, so that when they apply for a job, their proven abilities are at the forefront of employer's minds. Here are a few stories showcasing this approach. Becky's Story - SAF Holland "Before I was pretty much just sitting on the couch not doing much. I was just really cut off. It got a little more real like as time went on. And I was like, I want to get out there. A lot of people at Starfire helped me out with getting my job and they had a lot of confidence that I would be able to do it and they were like, 'this is you, so you need to get out there and you know, show 'em.'.. Now I got stuff to do and I'm not sitting there bored, so I'm busy and that's what I like to do." Megan's Story - Mt. Washington Rec Center Celebrating Megan's 2nd year of integrated employment! Molly's Story - Neyra Industries, Inc. "I love working with the team that I’m on. Everyone knows my name, everybody’s very friendly there." "It has been a pleasure having Molly here. She’s always so considerate and she always remembers little tidbits about people. She’s able to help get a lot of the administrative duties out of the way. So it’s helped free up a lot of their time to make our process in finances more efficient." - Molly's supervisor Emily's Story - Ensemble Theater "I got the job when my friend Ben from Ensemble Theater called up Starfire and was like, 'Where’s Emily at?' He was worried about me. I’d been volunteering for 2 years hanging up posters for plays and taking tickets during the shows. But I wasn’t able to get a ride down there anymore, and my mom couldn’t drive me down there at night because she can’t see very well. Before Ben called I was looking for a job for 2 months. I turned in a lot of applications but it’s a lot of 'college people' who are getting hired - instead of calling me back. But when Ben called he asked me if I wanted a job and said, 'yes'! I wanted that job! And he said okay. I freaked out! I was very happy. This is my first job. The number one thing I’m looking forward to is working, and if I make some money I’ll get a laptop since we don’t have a computer at home. And I like being at a theater. I’ve been listening to musicals since I was in high school, that’s how I got into theater in the first place. It makes me very, very happy that I know people down there." Mike's Story - Contemporary Cabinetry East https://youtu.be/1_LN11ctT-g Craig's Story - Kinetic Vision "I was at a workshop before. It was different since it was piece meal work. We had to do different tasks each day. I felt like I had to go really fast because you only get paid by the work you complete. One time at the workshop I got yelled at for going too fast. I didn't know it, but they were low on product and they wanted to share the work around to make sure everyone got some. In my head I was just thinking, 'I want to make some good spending cash so I've got to go fast.' I quit the workshop when I got the job at Kinetic Vision. It felt really good. I like it more here because of the culture – and I get an hourly wage. I don’t have a staff always watching over my shoulder. Everybody’s nice. The boss doesn’t sound or act like bosses typically do. Every once in a while they have food trucks come and in the summer we grill out – us employees get to enjoy that. Employees will bring their kids down and other family members down. They listen to what I say and they like the work I do. I’ve actually been showing them stuff. I feel like I’m valued." Adam's Story - Everything But The House "My last job was only temporary. I wanted to find other employment. It was just overwhelming. And I didn’t have my weekends off. Here the job level is just perfect for me. I load trucks and have them sent out. It’s different. It’s a fast paced environment which is really cool. My boss likes having me here. He’s extremely laid back, he likes what he’s been seeing out of me. He’s just a really cool person to be with. The best part is being able to get back in the workforce and get some money in my pocket. And I’ve been meeting a lot of new people. I hope to be there for a long time. Stick around and get to know more people and help the company grow. Help it be a well-rounded business. When I get my paycheck I’m going to probably let it sit in the bank and earn a bunch of interest." Congratulations to Adam (pictured middle) - who recently landed a job at a place he loves that's in his neighborhood. Follow our series on employment and learn more about our approach to getting more people with developmental disabilities into the workforce where they can contribute!! Instagram.com/starfircincy Facebook.com/starfirecincy
Girls Day Out
It's not often but when we do all get together, the women in my family are a close knit crew. Ages ranging from 2 to 65, something we can all enjoy together is a trip to the nail salon once a year. The day was unfolding well beyond expected. My two-year old had fallen asleep in the car, and on the way in she miraculously stayed asleep in her stroller. All I could think was how I might actually soak my feet for more than 5 minutes before I'd need to herd her wiggly self around the various bottles of polish and women in foam slippers. I saw her almost immediately. While 6 women in our party claimed our powered massage thrones for the next 30 minutes and dipped our feet into the bubbling LED lighted tubs, my eyes followed her. She was wearing an oversized pink t-shirt, and on it was the logo of a local day program for people with disabilities. Her hair was tousled just in the back, likely a pillow mark. A lanyard hung around her neck. This was different from my own childhood rebellion against femininity, those times I spent carefully trying to achieve what others called a "tom-boy" look. Her appearance instead seemed to be a forgotten chore, a part of her that was taken for granted. My curiosity for her piqued. I wondered what her story was. For the sake of the rest of this post, I'll call her "Ann." My niece bounced from chair to chair as we moved on to the manicure station, the flower design now decorating her right big toe a topic of her own delight. I spotted Ann again, this time a few tables back from where I sat. Beside her, a woman with upswept hair and neat clothes sat getting her nails done. Ann's knees were turned toward this other woman with her hands resting in her lap. Waiting. Ah-ha, I see. The blood inside of me began to boil. I looked around at my mom and sister, wondering if they too were seeing what I was seeing. They were looking over at my little one still asleep (still - a miracle!) and chatting about where to grab lunch next. Carefully, I pressed my palms onto the stroller and walked over with wet nail polish to the drying station. I sat across from Ann - and the woman she was with. The dryer clicked on and the fan blew cold air onto my wet, blue fingernails and toes. Ann waited. The woman drying her nails looked aloof. Annoyed even. She was occupied with the time, but in a different way than Ann was. It was the look of someone on the clock, waiting for their shift to be over. "Did you get your nails done?" I broke the silence, asking Ann. "Yesterday," she said. I looked down at her nails, their length unruly, brittle and chipped, but sure enough there was polish clumped and smeared onto them. Ann's hand lifted from her lap and lovingly, she reached over to sweep the other woman's bangs away. The woman darted her eyes and stiffened, it was clear she wanted nothing more than to disassociate herself from this disabled woman she came with. It was too much. "What agency do you work for?" I asked the other woman in my kindest, most curious voice. I was nervous about tipping my hand, revealing that I knew without asking she was Ann's caregiver and that she was on the job, but she was none the wiser: "Care Options," she said, turning to me with such polite responsiveness that I was taken aback. If she could be so kind to me, she wasn't just having a bad day. "Oh, I used to work there," I responded calmly, though she was hitting a new a nerve. I knew that agency well and had wrestled with them many times in the past. Engaging this woman had opened some valve and she began to talk for the first time since I had seen them. Ann put her head on the table and listened as we talked momentarily. As they got up, I looked deeply into Ann's eyes, "Have a nice weekend," I said. In my farewell, I hoped Ann could see I was her ally, hoped her caregiver would realize I was disgusted with the way she treated her, wishing I knew how to be less reliant on innuendos and body language and could just come out and express my thoughts directly. I had to sit outside. I explained to my mom the scenario that had just unfolded in-parallel to our girls day out, and she looked aghast. She hadn't seen any of it. Ann's unkempt appearances as she sat idly by her caregiver who was getting primped on the job were beyond glaring to me. But even in a salon, where self-care and women bonding are the unmistaken norm, most people didn't notice. Ann was the invisible outsider. Why couldn't they have just gotten their nails done together? How could anyone feel justified getting paid to treat the person they are supposed to be working for so poorly? My daughter woke up to the sound of my voice, louder and more clipped than usual. I wanted to call "Care Options" and report this behavior, make a fuss. I am still friends with one of their "consumers" whom I used to be a caregiver for, and over the years she and her family have come a long way to ensure she was getting proper supports. I asked myself if it was worth it or would it be more harmful to my friend if I made a big ordeal out of it. I hadn't even gotten their names, so maybe they would write me off anyway. Plus, I know this agency. I've had their training first-hand, I was a recipient of it once. They train staff to be documenters of behaviors and meds, to prioritize order and safety. The rest is passing time until your shift is over. People's lives become equivalent to hours on a paycheck. I saw this thought pattern more than once when I was their employee. Was calling to complain really going to change the way they train their caregivers to think? It's unusual for an agency to do that, to break mindsets -- the way we do at Starfire. That's one of the reasons I've poured myself into the work here for the past 5 years. Our end game is a shift in culture, we don't stop with just keeping people safe and fed. While it can mean some of that, at Starfire we know it goes way, way beyond the basics of simply keeping people breathing. What I also don't mean is that we take on the insurmountable task of "fixing" people to be less disabled, like so many agencies try through behavior plans and "life skills" training. We know that this way of offering support people often turns into a trap, where people with disabilities are cordoned off into the same programs with only other people with disabilities into an endless cycle of isolation and repetition. There they become known for their disability, and their assets are lost. At Starfire we aren't paid to control or manage people with disabilities. Our job is to tackle the root-cause at hand that we understand to be a widespread belief system that leaves people with disabilities out and leads to exclusionary or segregated models in our communities. So you see, it is other's mindsets that leave people out of ordinary life, not their disability. So we attend to image in a way that signals to others that this person, who might be seen for their disability at first, is also cared for and valued. We ask that staff and the person they support are doing things together (like getting their nails done), because it models for others what it looks like to include someone with disabilities in a relationship. We try not to be an end for the person we are working with, but rather act as a bridge to more relationships, more opportunities beyond what our paid role can do. So we discover pockets of opportunities where people can contribute in the community. We do more than just keep people alive. We make space for them to be loved and cherished. This is what I want every agency and paid support person to want for Ann, but we're not there yet. Still it burns inside to see it happen, and breaks my heart to tell the story when it does. What more should I have done? What more could I have done? I'll continue to ask how I could have done more. Perhaps my bravest step is writing this blog post. Maybe you'll help by sharing it. I'd love to read your comments. More from Cincibility: A Good Staff: part 1 Manicures aren't quite so simple The Five Valued Experiences Case Files & Memories Riding the White Horse
In Our Lives, At Our Dinner Table
Since 1993, Starfire has been an example of inclusion in Cincinnati. Though the way in which we do our work has evolved over the past 23 years, we have remained steadfast in our passion and philosophy of our work. That is we know that life is more interesting, more beautiful and our communities more complete when we include our friends, neighbors, and family members with disabilities. Starfire believes that people with disabilities not only deserve a place in our communities, in our lives, and at our dinner tables, but in fact have beautiful gifts to share once invited. This has been my life’s work over the past 8 years... I have had the privilege to see and be a part of the impact of what happens when people turn off their TVs and turn to each other, when the spark of friendship is ignited through a common interest and when the seeds of love and understanding are planted as people come to belong to each other over time. Our work is in stark contrast to what we see in the world every day: violence, fear, divisive rhetoric, hatred, loneliness, and broken communities. We are told to fear our neighbors, to be suspicious of those different than us, and to live anonymously among our own kind. Instead this event, and these stories define who we are. Starfire, and this year of community building projects show us a different way. A new story: That changing the world can be as simple, as radical, and as revolutionary as quilting with a neighbor like Andrea and MaryAnn, becoming a valued community member like Telly, or planning a bicycling fundraiser like Robbie and Burke. We know that we cannot force friendship or legislate love but because sponsors and donors invest in our work, because families believe in this work, and because community members and ordinary citizens do this work with us we are changing the very world we live in. And at it’s a core this is a pretty ordinary way to live. But the impact on our communities, on our lives, and in the lives of people with disabilities is having an extraordinarily beautiful effect. Through our stories we see people coming together sharing places, people growing in relationships, people making contributions and choices, and people stepping into valued roles and experiencing respect, one person at a time, one small extraordinary project at a time.
Molly's Story: A Full Life (VIDEO)
https://www.youtube.com/watch?v=ROJExyR9MzQ Molly embarks on the journey toward a full life, filled with relationships, valued roles in the community, and passion. STORY SOIREE 2016 (Starfire Story) by Katie Bachmeyer Allie: Why is it important for you to meet new people? Molly: Because I think it’s important to build friendship. Katie: What were you doing before all of this? Was your life busy do you think? Molly: My life wasn’t busy at all. (pause) Katie: Now it is? Molly: Yes. (fade out/in) Brieanne: We’ve been together for so long I feel like we’re an old couple! Maybe we’re boring now. Molly: (laughs) No we’re not! Brieanne: We don’t have anything exciting to say! Molly: My community would be totally different without meeting Brieanne and her friends I know. Brieanne: I guess, you’ve just sort of become a part of my friend network and I... It just seems organic and natural if someone asks like, “Hey do you want to do a get together?”I think of all my friends to invite. We’re doing a barbeque, who should I invite? And I just go down my list of friends and you’re -- just on that list. With or without Starfire, I mean you’re always going to be my neighbor and my friend. Molly: Yep Brieanne: But we’ve had challenging parts. I mean there some parts that like, probably get on each other’s nerves. Molly: Right Brieanne: I’m always late for everything. Molly: Which I understand now! I’m like uh-oh Brieanne: And the only time I was early, you were surprised! (fade in/out) Molly: Starfire has helped me make friends. If I were still in the day program and I didn’t have like jobs or volunteering I would not know that many people. I’ve been on Bark for Life committee for four years. I love planning the event and meeting the other community members (American Cancer Society fundraising event). And I also volunteer in Leanne’s room in the preschool department. Leanne: Being in a preschool classroom it’s kind of a fly by the seat of your pants environment. So it’s nice that she can kind of just jump in and help out wherever. And the kids are really receptive to her and enjoy having her around. Molly: And I also work at Neyra. I love working with the team that I’m on. This is the office area where I put my stuff. Everyone knows my name, everybody’s very friendly there. Lindsay: It has been a pleasure having Molly here. She’s always so considerate and she always remembers little tidbits about people. She’s able to help get a lot of the administrative duties out of the way. So it’s helped free up a lot of their time to make our process in finances more efficient. Molly: And I volunteer at May We Help with my friend slash neighbor Terry who’s Executive Director. Terry: Molly’s got a great personality - she’s just a joyous and passionate person and when I pull up in my driveway Molly: I always make sure I say “hi” to you guys too. Terry: Absolutely, that’s what I was going to say. It brings a smile to my face because I know she’s going to say “hi.” It’s just always great to have people like that in your life. Molly: I think that Terry is one of my best friends because I can tell him stuff. Terry: She just always brings that, you know always brings that joyous and passionate attitude with her whoever she goes, so it certainly has an impact on my life. Molly: I don’t know who I would talk to about Pete Rose and Sparky Anderson. Terry: Me too. I still haven’t showed you those pictures have I? Molly: No...Hold on I might come over tonight because I’ve got more books to show you… (fade out) ...Molly continues to build a full life - one relationship at a time. _____ STARFIRE IS: a visionary organization working to build better lives for people in Cincinnati, Ohio. We connect people with developmental disabilities to relationships and uncovers a person's talents and passions - so they can thrive in their communities alongside their neighbors. MORE STORIES: http://bit.ly/1XcZNWc SUBSCRIBE TO OUR YOUTUBE CHANNEL http://bit.ly/1RAsGeG FIND US: www.facebook.com/starfirecincy www.instagram.com/starfirecincy www.twitter.com/starfirecincy www.starfirecouncil.org 5030 Oaklawn Dr. Cincinnati, OH 45227
3 Ways to Change Someone's Life
Have you ever stopped to find out what drives the way you present yourself?Check out these pretty typical Instagram profiles to see what I’m getting at- @JAlanPipes “Maker of the finest luxury smoking pipes” @bjmacwoodwork “Father, Husband, lifelong woodworker. Sharing knowledge makes the world a better place.” @gushmann “Director & amp; Filmmaker” @andreaswiig “Professional Snowboarder. 3x X Games gold Medalist. Pow lover” @seelyseeclimb “Climber, Artist, Writer, Team Five Ten, Risen from the wheelchair, currently in Yosemite” @jacklenniedesigner “Designer, Warner Brothers, Tinker, SSCO, Edinburgh – London” @dchapdelaine “Minster / Adoption / Foster Care / Music / Coffee / Check out the youtube channel” This is a pretty quick and random group of people, but see if you can pick up on the things that they all have in common? It’s hard to pin at first because we all subconsciously do this. Here is the thread – To the best of our own individual ability we all "put our best foot forward" and try our hardest to display only our characteristics that are most valuable to the people we value the most. This is pretty intuitive when you say it out loud. The innate hunger driving this constant instinctual adjusting and tending to ourselves is from our crave for “The Good Things of Life”. You know…Approval, Acceptance, “to be fully known and fully loved” kind of thing, and naturally everything that makes that good life possible: family, friends, attention, opportunities to grow, money of course, and on and on. Think about how people introduce themselves- “I’ve worked there for [X] years”, “We are so proud of how our kids turned out”, “The design team I am on was just selected for the new project”, “Our neighborhood has this party every year”, “You have to hear what my sister has been up to..”. Statements like this reveal that these people have socially valuable roles like Employee, Husband, Father, Wife, Mother, Designer, Team Member, Industry Leader, Culture Maker, and Beloved Neighbor. The way we choose to convey who we are to others might as well read: “people look up to me”, “I am valuable and interesting”, “impressive, right?” But what you don’t see, and what is equally true, could be something like: “I have no idea what I’m actually doing with my life 90% of the time”, “My retail-therapy habit is trying to kill me”, “The reason I am not comfortable about marriage or kids is because I can’t even begin to process what happened to me growing up”. We all subconsciously regulate the not-so-attractive traits about ourselves that we can’t change, and simultaneously project our best. Because in reality, every single person on earth, from the leader of a first world country to a person trapped in sex trafficking, EVERYONE, has within themselves untapped strengths and indelible weaknesses. Now it’s easy to solely blame bad luck here about whether a person has “the good things in life” or not, but don’t be so quickly tempted to scapegoat the whole picture. Whether a person gains or loses social value after they are born depends far more than we comprehend on what others expect of that person, and what that person expects of themselves, and on Newton's First Law... Expectations from others and about ourselves are cyclical and self-fulfilling, whether for good or bad. They are like Snowballs, on a Mountain, in Space (which would make them ice-balls, but stay with me). Whatever direction it is pushed at first, uphill or downhill, is the direction it will continue and build mass in. Unless of course, the snowball is acted upon by an outside force... Since that logic is pretty much irrefutable (thanks Newton), it would then seem really important to receive and believe valuable expectations about oneself from the get-go, over negative ones, in order live up to and retain all the countless, valuable and powerful identities we desire… “The Good Things of Life” Here’s is an example of how negative expectations can tragically strip a person’s social value- Let’s say a grown woman with a fit mind and body cannot communicate in a typical way but has an interest in gardening. She is then granted support from human services and they determine she needs so much help communicating that someone should be staffed to be with her 12 hours a day. Her staff person, expecting that the woman would not be able to understand the nuances of gardening, decides it would be best to avoid failure by not going to the garden often and by disclaiming to the members of the garden that the woman should not be given real gardening tasks. What would those lowered expectations do? The woman will likely be frustrated, even aggressive at this decision. She is then assumed to be a danger to herself and now requires full time staff and is further restricted from the community. Which in turn would not only call out more aggressive behavior in her, but she too would begin to believe that she should be restricted from the community - Fulfilling the negative expectations to everyone that she is not able to garden, should not go out often, and is indeed a danger to herself and others. Here’s the corollary example of how positive expectations can help someone gain valued roles instead: Let’s say this same woman is expected to be active in the community by her staff person instead. They explore their neighborhood and meet people at the community garden. She develops a familiarity and competency working with the other gardeners and is expected to contribute and pull her weight because of her new found skill. What would those raised expectations do? Now of course she is driven to live up to those expectations and by the end of the growing season she has gained the respect of the other members in her neighborhood garden and viewed as an equal there - Fulfilling the positive expectations that she is caring, competent, and needed in her neighborhood. So what is the reason it is assumed (expected) that a person with an intellectual or physical impairment couldn’t, or even shouldn’t gain socially valued roles? Roles like Employee, Husband, Father, Wife, Mother, Designer, Team Member, Industry Leader, Culture Maker, and Beloved Neighbor? Let’s lean on the father of deductive reasoning (thanks Aristotle) to find out- IF every single person on earth has within themselves untapped strengths and indelible weaknesses… AND if to the best of our ability we all regulate those indelible weaknesses we can’t change, and simultaneously project our best… AND since whether a person gains or loses social value depends largely on what others expect of that person, and what that person expects of themselves… THEN the reason people who are impaired are assumed to not go anywhere, or to be in fact mere adult children, or liabilities, or just “holy innocent gifts”, or identified solely by their diagnosis, or to be distanced from "more important" people, or even to be justly euthanized… ...The reason may be that impairments can make it impossible to regulate ones not-so-attractive traits, and even impossible to project your best to others. Is this a valid reason to expect the worst of and for someone? Or is it actually the most important reason to expect the best of and for someone instead? Just as humans universally unconsciously portray their best, people with impairments are universally subconsciously devalued, to the point that when a person with an impairment gains a valued role, such as a high school sports coach for example, it is considered a rare phenomenon or even a social miracle. So what can you do to confront such a universally accepted negative expectation for people with impairments? What could the most meaningful and effective response be to this? How could you actually change someone's life knowing this? Be aware of the negative expectations and ways a person is presented that are limiting their life Be in a person’s life and get to know someone beyond what impairs them Believe and expect in a radically new or even best self for a person and work together strategically towards that end (Bonus) Be encouraged to know that the belief and support of even just one person can be enough to stem off the torrential undercurrent of lowered expectations, and certainly enough to change a person’s life.
Bonsai
How it came to be decided that bonsai might be a pursuit is a longer story. But, we found ourselves one morning Googling bonsai, and given Becky’s previous work with fairy gardens and love of plant life in the miniature, it seemed like a good next step. Community building work is often slow, long haul work. We don’t fully recognize our efforts until after some time when the long view comes into focus. There’s research, trial and error, meeting new people whom we hope will become friends or advocates, and there are small successes, some failures, and some days suspended in what’s next apprehension.Every once in awhile though, community building is fast, go now work, and those are the days I love. After series of Facebook messages, an email and some texts the week before, and we found ourselves on Wednesday afternoon waiting to meet Lemual outside of the Krohn Conservatory. We agreed to meet at 12:30, to walk and talk together while checking out the bonsai display there. Being Butterfly Show season in Cincinnati, I paid admission for the three of us, and let Lemual lead the way, observing both his and Becky’s fascination for the ingenuity of the landscaping outside, the variations of cacti and the dry air of the greenhouse, the misty coolness and the vibrant colors of the orchid room. <figure class=" sqs-block-image-figure intrinsic " > bougan Eventually we meandered into the bonsai room. Lemual’s thoughts on gardening and cultivating trailed like the vines of the bougainvillea: green sprouty fingers folding into colorful flowers, his words tumbling from one idea to the next beautiful reflection and thought on plants and growing.He thumbed through his Instagram feeds showing us potters who specialize in bonsai containers, boutique bonsai stores in Florida, pictures of pretty plants he’d seen and snapped just because of their colors or something interesting about the way they looked. <figure class=" sqs-block-image-figure intrinsic " > beckyLemual The purpose of bonsai, we learned was two-fold: beauty and appreciation of beauty for the viewer of the bonsai, and an exercise in effort, patience, and creative design by the grower. To start, one only needs a bit of material, a shoot, a seed, a small tree or shrub, and lots of patience over time.It reminded me of community building work. To start, one only needs a bit of source material, an idea, a seedling if you will, a passion or interest. From there, the work continues over time, designing, pruning, growing. <figure class=" sqs-block-image-figure intrinsic " > training We paused in front of the Texas Ebony. The tag read In Training Since 2008. I asked Lemual what “in training” meant and he explained that the bonsai is never finished. Because it is a living, growing thing, all trees are always in training, making small adjustments, cuts, and crafting a design over its lifetime.Much like the Texas Ebony, I’ve also been in training since 2008 with much more growing, pruning, patience, and designing to do. Bonsai, like community building, is never a finished piece of work. Even though Becky is employed part-time as a data clerk at SAF-Holland, volunteers at GreenAcres once a week with the garden education team (logging the most volunteer hours of any volunteer in 2015), is on the Dirt Crew at the Civic Garden Center, is getting connected to Hamilton County Parks invasive removal species team, is a reoccurring guest (and potential future member) of the Monfort Heights / White Oak Ladies Garden Club, and considering joining the Greater Cincinnati Bonsai Society, the work of community building is never done.Because we are living, growing things, we are always in training, making small adjustments, cuts, and crafting our design over our lifetime. <figure class=" sqs-block-image-figure intrinsic " > invasive <figure class=" sqs-block-image-figure intrinsic " > becky garden club
The right thing, and the hardest thing
This is a reflection from Katie, an intern who started a few months ago....Here are her first impressions of what it's like to walk into a Starfire circle: “Sometimes the hardest thing and the right thing are the same.” -The Fray Starfire is located in Madisonville in a very pleasant building. What makes Starfire’s space pleasing to me is mainly the abundance of windows. These windows allow for plenty of natural lighting creating a bright and cheerful ambiance. There are also many rooms available for work, meetings, and activities. Beyond being aesthetically pleasing, Starfire is filled with extremely kind and friendly people, making it an overall delightful place to spend time. But what if this was where you spent the majority of your time whenever you weren’t at home? What if you passed through these bright halls and saw these same friendly faces multiple times a week for years? It wouldn’t matter how pleasant the building was or how nice the people were, there would be something that was missing. As human beings we are social creatures that are in need of a sense of belonging, a regular chance to meet new people, and opportunities to form relationships- platonic and romantic. So as great as Starfire’s home base in Madisonville is, what would it mean for people if that was all that Starfire had to offer them. Sure, it would be safe and free of risk to gather people at the same place every day where there is a controlled environment, but where is the growth and opportunity in that? Where is the possibility for connection? This is where the fear of the unknown has to be pushed aside and the idea of shared places is put in its place. Before I was introduced to Starfire I would not have thought twice about having people meet at Starfire every day. It sounds like a great idea to me, a pleasant space with kind people to help people with disabilities have a better life. Yet, the first thing I learned at Starfire is that a better life is not at 5030 Oaklawn Drive, Cincinnati, OH, it is anywhere but. By this I mean that there is no one place that people can be sent to have a better life, because a better life is all around us on front porches, at parks, in coffee shops, at the grocery store, in a yoga studio, in the work place, and so much more. Every person who is a part of Starfire is a pioneer and a trailblazer who is trying to break the pattern of how people with disabilities are excluded by society. So, what is Starfire doing instead of meeting at the same place every day? They are asking themselves, “How can we take people to the community instead of just staying at Starfire?” People with and without disabilities are getting together and choosing different projects and interests to create their own shared places in the community. It is all about gathering at cafes, parks, and neighbor’s porches because these are the places that have the possibility for connection. However, connection and relationships are not just found because a person is brought to a coffee shop, there is so much more to it. It takes showing up, and not just once, but continuously, being open to meeting others, allowing for complete inclusion, and not being afraid to be hospitable and the welcomer. As easy as it would be to create a community within the walls of Starfire on Oaklawn Drive, it would not be benefiting people who already have a hard enough time being isolated by society. “We have to find strength in the struggle,” said Tim part of Starfire’s staff. It has to be known that just because the intentions are there to do something great, it doesn’t mean it will happen easily. Shared places in the community take a lot of time and effort, but once they are created they can have a profound effect on all that are involved. I am about to experience my first Starfire shared place this evening as I attend Amanda’s “Sip N Sketch” at a coffee shop in Northside. I know that Amanda repeatedly worked long and hard on this project to create a place that involved her passion for drawing and art. Stay tuned for my next post which will be about my experience at Amanda’s “Sip N Sketch”.
Doug's Story: Navigating the Arts
Belonging to the present moment is one of the challenges of this work. Goals are important, just as learning from our past is, but it’s easy to get caught up in the past or the future and wind up getting nowhere. If we spend our time reminiscing, the pitfalls and mistakes will turn us inward. Wondering about the future worst-case scenario, and nothing we do will seem like it’s enough. That’s why our faith and our efforts are best used when they are locked into the present moment. Gradually, the coffee we had with a neighbor, the class we joined at a dance studio, the idea we presented to the art museum, one-by-one collect like tiny pixels until every moment adds up and stepping back, a beautiful story of “the good life” emerges. Doug and Regina from the Contemporary Arts Center, taking a break from his role as a museum guide. A Moment: May 5, 2016 - 2:30pm Contemporary Art Center Cincinnati, OH On this day I find Doug by the welcome desk. With his brilliant grin and sarcastic eyes, he is making small talk with the ladies behind the desk. “Hey! Long-time no see,” I chirp. His wheelchair clicks into gear and I’m led through the employee elevator and hallways, into the underbelly of the CAC. Holding still among the crisp white walls and soft lights, we pass by sculptures made of string and exhibitions with culturally disruptive names like “Chasing the Whale and Other Endless Pursuits.” Doug lives a few blocks north from here, in a nice apartment in Over-the-Rhine where up-and-coming young professionals are flocking. Up and comers like Doug. Except until this day, I have only seen Doug in a setting where his wheelchair and speech device are one among a swath of other disability-related imagery, in a day program with other people with developmental disabilities. Back then, Doug was a disabled young man going to a place that fit with his disability. But on this day, Doug is a lover of art, a man with insights and humor, and a camera operator who is giving me access to the “employee-only” corridors of the art center. Today, he is surrounded by glass-enclosed artworks and cluttered cubicles and sculptures made of string. I still see his disability, but I also see Doug. He debriefs quickly with his supervisor about the next film that he’ll be working on, and one of his co-workers attaches a tiny GoPro camera to Doug’s wheelchair. Things are moving fast and I realize I underestimated how much work he needs to get done while I’m there, and that I might actually be in the way. Ben, his staff from Starfire, walks with him through the exhibits directing the shot, and Doug follows cue. The GoPro and wheelchair combination is a perfect set up for recording art smoothly, in a way that helps the viewer arrive at the exhibit through Doug’s point of view. His vantage point is not just different; it’s instructive and useful. Doug’s story is a success story. Through the use of his wheelchair and a GoPro camera, he has landed a job at a local art museum and become an integral part of their marketing and communications team. His videos are played on the Contemporary Art Center's website and Vimeo, and have become an asset for the organization. This is also a long story - of a billion steps that were taken leading up to this day, when I am standing by Doug getting swept up in his work. And that is my take away. This moment is one of many - and as each stacks on the other, they will continue to build and deepen the relationships and valuable contributions Doug is making. As we head back toward the editing suite where Doug uploads his footage for the editor to work with, I hear the bantering back and forth of co-workers who truly love to work with one another. Seeing this, I understand that above all else in common, greatest gift we share in all of us is love. When that gift is both accepted and reciprocated, it makes belonging to the present moment not only more manageable, but an altogether joyful thing. To view Doug and the Contemporary Art Center's work together, check out their videos gallery tours here: https://vimeo.com/contemporaryartscenter/videos
Starfire's Response to Disability Rights Ohio Class Action Lawsuit
March 31, 2016, a federal class-action lawsuit was filed by Disability Rights Ohio (DRO) advocates claiming that the state of Ohio is illegally segregating individuals with developmental disabilities. The purpose of the lawsuit is to increase choices for people with disabilities, particularly with regard to more options for people with disabilities to live, work, and socialize in the community. You can read the full lawsuit here. This lawsuit comes at the tail end of our journey out of segregated services. In 2010, Starfire’s transformation from segregated services to integrated supports for people with developmental disabilities began. Six years ago we gathered families, people with disabilities, board members, staff, and volunteers to build a new Strategic Plan together with the realization that Starfire’s previous model of focusing on social entertainment and fun only produced a temporary, unsustainable impact on people with disabilities’ experience of social isolation. Our change was intentional. We felt we had a moral obligation to shift away from segregated services and instead into focusing all of our work in supporting people with disabilities into growing in relationships with ordinary citizens, making choices, experiencing respect, making contributions, and sharing ordinary community places with other citizens. It has been the right path for Starfire to take though it was not without difficulties. We know that organizations, families, and people with disabilities embarking on this shift will face many of the same challenges we have overcome, and continue to wrestle with. This journey is not without many tough conversations, difficult questions, and time. And yet, it has led to our most worthwhile, and beautiful work to date. <a role="presentation" class=" image-slide-anchor content-fit " > <a role="presentation" class=" image-slide-anchor content-fit " > We believe that the responsibility to change is not just on the service system, but also relies on caring people who are willing to build relationships with people with disabilities and families who are interested in being part of this social innovation. Starfire believes the future of disability support belongs in the community. We know that you cannot legislate love or force friendship. That is why we are devoted to supporting people with developmental disabilities in finding their place in community by working in a person-centered model, by partnering with families, ordinary people, and businesses who believe in our mission. We are steadfast in continuing our work in light of this recent litigation and committed to including our friends, family members and neighbors with disabilities as the central focus of our work: one person at a time.
For inclusion and hope (an invitation)
Expectations for Starfire's first year of "collaboration projects" were high, though their design was simple enough: creative ideas built on shared passion - done in the spirit of inclusion. These projects were invented for people with developmental disabilities who belonged to our post-high school day program as a sort of capstone, or final benchmark before they moved on. Inclusion being our end goal, we knew not to base these projects on shared labels, like disability - but on a more commonly perceived denominator - shared passions. So whether it was cars, fashion, local history, or gardening.... passion and inclusion were to be at the center of these projects - not Down Syndrome or Autism or Cerebral Palsy. The goal of inclusion for these projects also meant that each was designed to cultivate a real, authentic life experience in the community. That is, people with and without disabilities meeting over common interests to collaborate. To find people willing to be part of this first year of projects, we had to put our asset-based community development training to the test. We knew from this training that our communities were not vapid, boring places to live but in fact rich, vibrant places that simply needed to be tapped for their resources. "Every community, no matter its state, has possibility. Every community member, no matter who, has something to offer." Sure enough... Out of the woodwork came genealogists, screenwriters, bicycle commuters, and car enthusiasts... We plotted those people willing to share their passions on a digital map of Cincinnati and started to envision the future of our work, where inclusion was built one project at a time. Even more exciting was how different the invitation to ordinary citizens sounded. It wasn't the same as asking volunteers to join congregated activities (activities involving a group of people with disabilities). There were no sign up sheets, no service hours, no coercion. The invitation felt personal, a no-brainer for most, even flattering to some. You want me to share my love of xyz??? People were gung-ho to do something productive that got them out of the house and networking with people who were like them. Not only that, but this passion-centered design of projects turned out to be a source of momentum, and people worked overtime to make their project a success. Ultimately this blood, sweat, and tears proved to be what was most beautiful about collaboration projects: the drive was relationships. And hope. Out of this experience, the potential to form sustainable, authentic relationships grew. It was everything we hoped for, mostly, when we imagined an inclusive Cincinnati. And while we didn't quite know it then, these first projects became our prototype for how we would design our work of inclusion moving forward. This was all going on during my first year working at Starfire, and at some point I was told to pull out a camera. Someone had to document what was happening. My sister's mini dv camcorder in hand and a digital voice recorder for a microphone, I began to follow the story of inclusion unfolding all over the city. A stack of tapes soon filled the corner bookshelf by my desk. By the time graduation rolled around, I had enough film to create a 1-2 minute video for each project and these played the night of the ceremony. Among them was a play adaptation of a book, a written and photographed montage of stories across Cincinnati screen printed into a mural, a car show, a musical production, and a film festival on street cycling. We hoped the people watching would not just clap and leave without realizing what we had over the last 6 months: that these projects somehow managed to get at the heart of what it means to truly be included. And they did so not by contriving “special” scenarios for people based on their label of disability, but by telling a bigger story than disability - a new story. <a role="presentation" class=" image-slide-anchor content-fit " > <a role="presentation" class=" image-slide-anchor content-fit " > <a role="presentation" class=" image-slide-anchor content-fit " > Today, my mini dv camcorder is a more impressive Canon with two lenses I'm still figuring out when to use, and a few real microphones have been added to the arsenal. "Graduation" night has morphed into one of Starfire's biggest fundraising events and an entire night of storytelling through video. I now have over 80 of these 1-2 minute videos under my belt, and equalling almost as many are the collaboration projects that have been done over the past four years. Admittedly, this pressure to create 20 more videos every year puts me in a bit of a panic in the months before June. I want badly to get the story right. My dreams fill with sequences to the footage I've collected, the narrative writes in my head over breakfast. I doubt myself before I go into an interview, and I wonder how else I could have asked the question when I am done filming it. Editing turns days into night quickly, my eyes start seeing floaters and my shoulders ache. Sometimes it feels like I'm not equipped, like I don't have the talent or the creativity or the finesse to pull it off another year. And this story is too important not to get right. Feels a lot like writers block. Then I remember back to the first year, to a crammed room with Ronny and Jovan and Leah and Krista and Sarah and Brandon and JC and Jason and Candice all there. Projects aren't even real yet, they are still an idea at that point. I am two months into my job. People with developmental disabilities from the day program gathered with staff to take turns sharing what their project idea was: "My project is 'Cheeseburger Coke Parties,'" "Mine is a play adaptation of the book Waddie Welcome," "My project is a film festival called 'Bikes and Busses are Better than Cars'....." Each announcement is followed by an absolute eruption of cheering. The kind of unadulterated cheering that is not for the sake of cheering itself, but is indeed the purest and only available reaction to feeling in the room. We were onto something, it was known even then. Before my own eyes, people were shedding their label of disability and owning a new story of strength and commonality through these projects. And courage poured out - right out, I tell you - of the center of people's hearts as they got up and spoke. There was hope. I found myself sobbing in Tim's office afterward. It was the most beautiful moment I had ever been a part of, and I felt so new and unworthy and yet unquestionably welcomed and invited. That feeling - that's Starfire. So, dear reader, if you decide to show up this June at the 20th Century Theater - you may have the chance to hear this cheering once more. It comes at the end of everyone's video. When that cheering hits you unawares (if it does the way it did me), look around at everyone who is part of this emerging story of inclusion in Cincinnati. And when you do, just know that like everyone else here this evening - you are also whole, worthy and invited. And this hope is for you, too. See you there, Katie #starfirestories <a role="presentation" class=" image-slide-anchor content-fit " >
Holy Thursday
Last week, at our weekly roundtable conversation about our inclusion efforts, Amanda stood up and extended an invitation. She and Bridget had been planning a "Sip & Sketch" and she wanted to make sure everyone knew about it. They had designed it based off of Amanda's love of art. They wanted a regular place where anyone could show up and draw together, so they worked out a plan with a local cafe, and then began planning and inviting. It was a beautiful moment, and the first time in the four years I've known Amanda that she stood up in front of a group to speak like this. Bridget said they had to print up extra flyers as Amanda had handed out so many of the original batch. This was obviously a big deal. These projects are my favorite work at Starfire. They help make Cincinnati more interesting, and, of course, include someone at the center who has lived most of their life on the outside. But they always come with a great deal of risk. Will anyone show up? Will the people who say they care about us be there? Will it even matter that we've spent all this time planning and inviting? Our mentors always start meetings reminding us that "whoever shows up will be the ones who were meant to be here." It's a nice way of hedging our bets in case no one else shows. It's a preventative protection against the rejection we are constantly absorbing with and on behalf of each other. The first monthly "Sip & Sketch" was planned for a Thursday in March. Holy Thursday, ironically, when the image of people breaking bread together is top of mind and we prepare ourselves to think about hope-lost and hope-found. It was supposed to start at 6:30. When Bridget and I arrived at 6:15, Amanda and her mother and sister were already there with coffees in hand, huddled around a small table in front of the cafe. We ordered our own drinks and made our way to the back of the cafe. It was crowded, with people on their laptops, working quietly on their own . There was an open table of four, which was perfect for these four brave women: Amanda, Beth, Andrea and Bridget. But what if other people showed up, as we hoped? There were only two small tables unoccupied. I pulled one of them over to make room for six, expecting that at least two would show up...wouldn't they? In a moment of daring, I pulled over the second table, making room for eight. It was a risk. If those four extra seats remained empty, it would be another wound for Amanda and her mother and sister, who have had years of sitting, walking and being alone together. And it would be rough on Bridget, who poured her heart into honoring Amanda's love of art, birds and eclectic conversations by connecting her with others who share the same orbit. The clock hit 6:45. It was pouring down rain. We were all thinking the same thing: Surely people are caught in traffic, or waiting for the rain to let up. Surely it won't be just us here tonight. Right? I started making the excuses in my head: rain, Easter weekend. I began telling myself it was no big deal: This is the first of a monthly gathering....Surely we'll end up with a few more next month and a few more the month after that?... I started doing a mental analysis of how we could get more people here next time. I even asked Amanda if she was open to having a featured artist each time, thinking "at least that means one person would show up." I saw a woman walk in who had a cup of coffee and looked our way with a smile. She sat down by herself with nothing to do. "Maybe she is looking for us," I thought. I gathered some dishes to take up, and intentionally walked by her to make the invitation. "No thank you," she said. My hopes sank. The clock hit 7:00. Amanda began asking about people by name. "Is Ursula coming?" "Is Grey Coming?" "Is Jen coming?" Each time she asked, I winced. I thought it might be time for me and our two sons to make our way over to their table. At least the three of us joining them would fill up the table. Maybe Amanda and her family and Bridget would forget that no one else had showed up if we filled the empty chairs. And I reminded myself of those hollow words "whoever shows up will be the ones who were meant to be here." I guess it was just Amanda and her family and Bridget and our family meant to be here tonight. I want to believe those words so much, and I tell others that same thing so they won't feel rejected, should the worst happen. But deep down, we know it hurts. And we all knew the worst thing we feared about tonight was going to happen: No one, despite our best efforts, was joining us. And then....Jen walked down the hallway! My heart leapt and I sighed. Thank God for Jen! We thought she might come. She said she would. And she did! "Michaella is up front getting coffee," Jen said as she gave us all hugs and sat down next to Amanda. Michaella was here? Awesome. Thank you, Michaella! That's two! OK, we're good. The day was saved. Moments later, Grey walked in, apologizing for being late, and brightening up the room with her big beautiful smile. Grey! You are more amazing to us right now than you could ever imagine! She pulled out her watercolors and started catching up with Amanda and getting to know Amanda's family. There was only one empty chair, and Grey arriving had already filled our wildest dreams for the evening. These seven ladies all chatted and complimented each other's art. Who could ask for anything more? And then Ursula walked in. She even had a copy of her comic book for Amanda! Sweet, thoughtful, wonderful Ursula. What a big beautiful, full table of artists. Bridget and I left around 8:30, and exhaled. All of our hopes and fears and worries and doubts had left us mentally and emotionally exhausted. But it was all OK. We held that last image of them happily chatting and working away. And Jen even texted Bridget a short while later that a patron had come over to the table and asked to be included in the next one! These are the moments that keep us all going. The risk for people like Amanda and her mom is a big one: If you put yourself out there, what happens if no one shows? Does that mean you're "supposed to be" alone? Do you eventually stop trying? And if you're Bridget, it might seem tempting to avoid the potential letdown by doing something that doesn't require anyone but you and Amanda. If the two of them go bowling or to a movie, there's no hurt if no one else shows. Avoiding rejection is a safe place in the short term. But it's a lonely place. I wonder if Jen and Grey and Ursula and Michaella know what it means that they showed up. Sure, it's nice, but do they have any clue how important it was that they chose to spend an evening drawing instead of getting home early on a rainy night? Do they have any inkling of how beautiful their choice was? The people who were supposed to be there showed up last night, even if it wasn't on our timeline. Holy Thursday, indeed.
Loose Threads
On our first day together, Andrea and I made a list of things she was interested in. I knew a lot of these things about her having drawn for her PATH a few years back: fashion, kids, shopping, doing her nails, her family, her friends, music…Usher specifically. The list continued and I thought out loud how we might be able to spend 3 hours a week together, meaningfully. What projects might be interesting to think up together? What could we explore? Would she be interested in taking pictures of people in her neighborhood and maybe displaying them at the Kennedy Heights Arts Center? Would she want to plan a kid’s fun day for the local Montessori center in the green-space by her house? Did she want to volunteer somewhere every week? What might we be able to do together that would add value to Andrea's life with the few hours a week that we had? Andrea mentioned that she liked the sewing class she had taken with a group at Starfire at SilkRoad Textiles, a local fabric and sewing shop. She had sewn a bag and a pillowcase with three other members and Bridget before the Flood as part of the day program. With the mention of sewing, we shifted gears and talked about different types of sewing projects. We Googled a few images of handmade purses similar to the bag she made, patterns for clothing items, embroidery and needlework, and then stumbled upon quilts. Andrea’s smile spread across her face quickly. I raised my eyebrow towards her and she nodded yes when I asked “Would you like to learn how to quilt with me?” I told Andrea I loved the idea of sewing, but wasn't very good, but was up for the challenge if she was. I made a quick Facebook post on my timeline, “anyone know how to quilt and willing to meet up to chat about how to get started with two newbies?” I got a couple of suggestions – talk to this person’s mom, there’s shop on Madison Road that teaches it, wish I lived closer!, I’ll ask my friend… but no concrete YESes to meet up with us and point us in the right direction. A few weeks went by and Andrea and I continued our exploration around art, sewing, creation. Following loose threads, we visited Tara Heilman’s studio in Sharonville, checked out an art exhibit at 21C Museum, and went to Xavier University’s art department. But we still had not found our in for quilting. I posted on my neighborhood NextDoor asking the same question: “Would anyone be interested in meeting up and talking about quilting with me and a friend on a Friday morning?” I got a deluge of responses from NextDoor. A lot of suggestions to sign up for expensive classes we couldn’t afford - a couple hundred dollars for Saturday morning sessions at one place, and a few messages from neighbors in nearby neighborhoods who were willing to chat with us but at times or days we just couldn't make. And then, there was a response was from Mary Ann. Mary Ann immediately said yes to talking to us about quilting and said it would be much easier if we just came to her house to chat. She explained via email she had dozens of handmade quilts and meeting in a coffee shop wouldn’t make much sense since she wasn't going to lug them around. We had to SEE what we might be getting into to really appreciate what we might be getting into. On the following Friday morning, Andrea and I stopped by Kroger and picked up a Fall plant to bring to our host. It was September and we arrived on her doorstep plant in hand, knocked on the door, and waiting, nervously. Neither of us had met Mary Ann before. She opened her door warmly and immediately invited us in to her adorable cottage-like townhouse. After offering us coffee, water, snacks, she showed us the way to her sewing room. Up the stairs of her home we found a small bedroom adorned in antique sewing notions, framed beach prints, and other whimsical décor hung on the walls. A sewing machine, ironing board and a cutting table featured prominently in the tiny bedroom. Two windows overlooked her garden and the pristine streets of Mariemont below. We talked while Mary Ann showed us pattern books, a few photos on her iPhone and quilt upon quilt of her work. Andrea didn’t say much, often quiet among people she doesn’t know. I asked questions for the both of us: how long did that quilt take? Who taught you to sew? What do you think about quilting classes to get started? What kind of equipment might we need? What’s a good first project for two people who have a basic understanding of the sewing machine? Ever a gracious host, Mary Ann answered our questions, told us stories about her learning to quilt by handsewing when she was a mother of two little ones. She laughed, recalling the hours it took to piece each fabric square together during naptimes and after her kids had gone to bed. “I use a machine now! Hardly anyone handsews a quilt anymore.” She told us about how she was teaching her granddaughters and read us a silly poem one wrote about wanting to be finished, finally finished!, with the quilt she was working on. After our hour and a half together had passed, Andrea and I stood to thank Mary Ann for her time and sharing so much information with us. Mary Ann nodded happily and stopped us. “You know,” she said as we were about to walk downstairs towards the car, “I could teach you two how to make a quilt. I have all the materials in these scrap baskets, we could make a scrap quilt. If you want.” Andrea smiled and nodded, clapping her hands together quietly and doing a little celebratory dance. We made a plan: frequent Fridays until the quilts were complete. For several Friday mornings we’d arrive on Mary Ann’s doorstep, climb the stairs to the sewing room, and piece together our creations with her guidance. I needed help keeping my stitches exactly even. Andrea needed help cutting her pieces out, but over conversations with each other and the whir of the sewing machine it began to come together, the quilts, and a budding little friendship. Andrea completed her quilt in January while I was on maternity leave with Jori’s help and the knowledge of a Mary Ann in her home, one piece at a time, one Friday at a time, one stitch and square at a time. While we could have taken an expensive class at a chic sewing studio, we took a risk and said yes to Mary Ann’s offer. We followed the loose threads of finding someone who might have the gift we were looking for, and who might be willing to share it with us, someone who might be willing to pick up a thread and add to our story. Watch Andrea, Jori, and Mary Ann in our Video Blog and see the finished quilt. Her story begins at minute 1:19. https://youtu.be/DAs1xGFBpmY
"Motherhood Changes You"
“I’d be curious to see what you’re doing in a few years.” There was a pause and a sort of knowing glance in my direction. I sat in the passenger seat 24 weeks pregnant with baby #1. “Motherhood changes you,” he said. I took offense to this, felt my face flush with annoyance, stuttered something unintelligible, and immediately began collecting facts for my case against this person. This person who assumed I’d be less capable in my work once I became a mother, the tone implied (or the tone I perceived) was that I’d be less dedicated to my career once I saw how cute onesies could be on tiny bellies. It felt as if this comment undermined my years of learning and work down to one assumption: that after a bit of motherhood, I’d probably take an easier route, a soft exit and leave the field altogether. I’d abandon my career and stay home because babies, or perhaps work at a bank.
Notes from Starfire's retreat
Letting go of guilt Feelings you'll not be enough. Trust the time you give, however little...is a LOT. Admit when you're Stuck. "A bad day together - is already better than a great day alone." Trust in serendipity Magic It will come - not out of the perfect plan. We have to look for the little steps. There's not one idea, ever. Not one way. Don't go it alone. "There are a lot of things that didn't work out, there are a lot of things in her life that I will never fix, or change. But if nothing else, she has people in her life - and she's happier." There's an element of risk - inviting people - building community - can seem scary to us... we fear rejection, or messing up... but to the people we're inviting in, a lot of times it's exciting, a new invitation. "Vonceil's a poet. A very powerful poet. She has met people who respect her art in the poetry community - people she can run into when we're out. It's still coming full-circle for me - what I'm learning from Vonceil and what she's learning from me." Everything we're doing is for the greater good. One day.... it just makes sense. You just never know how this thing that you're doing will have a reason. You can't plan it any better. It's a journey. Trust the process. "This job has led me to places I never thought I'd be. I'm sure Lauren wasn't aware of how big this was going to get." As staff - we are significant in people's lives. There are only so many people who get that call. Our work is to build authenticity. It seeps beyond the work/life boundary and becomes part of who we are. That's a privilege. Other citizens - then - can gauge what they can mean in people with disabilities' lives. There's power in what we do. It's important. It's worth standing up for.
Josh's Story: Speed Dial
The first thing Josh does when he gets the newspaper is read the sports section. He sits down, pen and pad, and lists all the dates and times of upcoming games he’d like to watch. Being such a committed sports fan, Josh wanted to find a way to not just the watch games - but to give back. He decided to start volunteering at the Xavier University Cintas Center’s concession stands in order to help raise money for a local girls basketball team. Three years into the gig, he can lead you through the back entrance of the gargantuan sports complex with a confidence that only seasoned VIP members exude. Navigating through the back elevator and hallways that are unseen to the typical ticket goer, everyone he passes greets Josh by name. “People like Josh really make people want to come back to the Cintas Center,” said Matt Kelley, concession manager. “He really has a huge part in this whole operation.” Once behind the concession stand, apron tied, the other volunteers who have worked with him for years will tell you that Josh is a well-known fixture. Come game time, fans will come by looking for Josh, or wait longer in line just so they can say hello. Starfire’s role in this has been to support Josh in building ties where he can become known for his strengths and commonalities. “The biggest thing, is I’m just one relationship. I want it to be a lifetime of relationships for Josh and I to have and to share together,” Alyson Tsiominas said, Starfire staff who connected Josh to the Cintas Center role. “In my phone, I’ve got Alyson on speed dial.” Josh said. “Building friendships is something good.” Josh also volunteers weekly at a local food charity, attends regular yoga classes, and has held down a job at a local food chain for the past two years as a result of Starfire’s support and his family’s commitment to his personal journey. Every year he and his family attend Starfire’s Final Four FlyAway, where Josh said it’s all of his favorite things in one night: basketball, beer, and food. We’d love it if you’d join him, and support this work to build lasting, meaningful connections into people with developmental disabilities’ lives. Join: Buy your tickets to the Final Four FlyAway Watch: Click to view Josh’s interview with Alyson at the Cintas Center Build: Get in touch to find out how you can become part of Josh’s story
Words (and Actions) of Welcome
Guest post by Kathleen Cail, mother and activist“It is great to have Grace in the choir… We are happy to have her.”—Michelle Markert, Choir Director at St. Anthony parish Grace showed up to her first church choir rehearsal last Wednesday evening. It was a cold evening in Madisonville and I would rather have stayed in for the night, but Grace was going to be part of the adult choir, at St. Anthony’s. She was excited and nervous. We arrived early so the choir director could listen to Grace sing and figure out her voice for placement—soprano or alto. When we arrived, people immediately came over to Grace to welcome her and help her get her walker up the steps to the alter. That is usually my job. Sometimes it is my job because I have always done it and just do it. Sometimes it is my job, because no one thinks to help and Grace doesn’t ask anyone but me.When we joined St. Anthony Parish, at the end of summer, I knew immediately, that this was a community of people who accepted each other and welcomed people with open arms. I felt a sense of safety here- safety to try building connections for Grace and for our family. Shortly after we joined the parish, it was time to sign up for various roles in the parish. Grace was all about this. She wanted to be a server or sing in the choir. The pastor was completely open to Grace being a server. The only problem was that servers do a lot of standing and some walking across the alter. This was going to be tough for Grace. I put the kibosh on being a server, much to her disappointment and irritation with me. However, I suggested she try the choir. When Grace got around to asking, the choir was well into rehearsals for Christmas, so the director invited Grace to start after the new year.I returned to St. Anthony, to pick up Grace after rehearsal. The choir was still singing, so I sat in a pew waiting for her. When practice was finished, I noticed that Grace was sitting next to an older woman and they were talking and going through a binder. Once Grace got up, another woman came over to help Grace get her walker down the steps. Grace was over the moon. She loved rehearsal (2 hours), was going to sing alto, she had met a lovely woman who helped her put her music binder together, and couldn’t wait to sing at Mass.Sunday morning arrived and I went upstairs to find Grace awake and reading. I was surprised not to have to wake her. She told me that she was so excited to sing at Mass that she couldn’t go back to sleep. Jeff took Grace to Mass early for additional rehearsal. Partway through mass, Malachi, a man I have come to know through a book group at St. Anthony, turned to me and asked, “Is that Grace up there in the choir?” Yes it is. As we left mass, other people approached Grace telling her how happy they were to see her in the choir.We have taken a step. Grace is seen, she is contributing, she is connecting with other people. It is a small step, but Grace feels valued and choir gives her a valued role.
With Goodness, Anything Goes: Part 2
Check out Part 1 here and then come back to continue hearing Tim’s story.TIM VOGT: I started working with Cincinnati Recreation Commission in their therapeutic rec division with Bridget, my wife now. I didn’t know it at the time, we were just coaching basketball together and we just had a good time. I started liking this girl and she liked me..and I could just tell. We just started talking, and then dating and then we realized our lives were becoming intertwined. And our futures were becoming intertwined and we had a lot of conversations. I remember her giving me a book or telling me about a book called Lamb’s Farm, which was a farm for people with disabilities up in Chicago. And we thought that was so cool. Looking back on it now, that would never happen. We actually think that that is the worst thing for people with disabilities to be shoved away by themselves on a farm, by themselves. We visited Lamb’s Farm just to see what it was like… It’s a farm with an ice-cream shop and a pet store and people live there, but it’s separate. It’s very separate. I actually visited and realized “thank god we didn’t follow that model.”This idea that even our dream of what we thought we wanted to do ended up becoming true in a way: what we wanted was just a place where people could become themselves and step into their own story. We just had to learn why that original vision wasn’t the best way to go about it…When I got the job at Starfire that was in 2000…at some point I volunteered to go on an outing with Starfire and we went down to the Showboat Majestic and we saw this play and myself and Maria who was a member of Starfire at the time got chosen to go on the stage and be in the play. I was Mrs. Claus and she was Rudolph or something and it was just a good time. The next week my roommate gave me this flyer from the paper, this was when they still had ads for jobs in the paper [laughs] and it said Starfire hiring full-time activity coordinator. My roommate Kathy gave me the ad and it was like “oh wow, this is perfect timing.” I was about to graduate college, Bridget was doing a year of volunteering at the Christian Appalachian Project so she’s not going to be up here for a while, so I went for this job and I got it. I remember they said I was too enthusiastic, that was the one knock against me. I was too enthusiastic about it. <figure class=" sqs-block-image-figure intrinsic " > Then I got hired and my job was to lead outings, recruit members and to double the amount of outings. Within about two months they gave me the job of being volunteer coordinator as well. I had to recruit all these volunteers, so I did all that. And my goal was to get community people. They wanted me to get parents and families, and I got citizens, like college students and community members, and then we grew those outings to like 100 a month. When I came there were about 40, and then were 100. Lynn, the executive director then, she was a really good executive director. She did the right thing all the time. She always tried to say, is this honest? is this right? That was really helpful to learn that lesson very young- what’s the right thing to do? And then eventually…she asked if I wanted to be the executive director. I said sure. She and the board spent 6 months teaching me how to do all these things, and then she went on maternity leave, and then it was mine from there. That was 2006. September of 2006. So it’s now been 8 years and along the way, Bridget and I moved to Bellevue in 2002. We bought a house and we got married. We had two children there. Around 2007 or 2008 we started learning the deeper parts of this work that was by meeting Jo Krippenstapel and having coffee with her and she started giving me articles and started challenging some of my previous assumptions about the work; but also honoring the core of what we believed in. That story about Dominic and the whiskey, those stories were honored, but the one about wanting to start a farm [laughs] was like challenged. It was hard to have those things I thought I was right about and being told I was wrong, but then again it was helpful to have a mentor to hold my hand through that.We had started Starfire U already which is a big giant program which got a lot of excitement around and quickly started to learn from people like you, Candice that this should be taught by citizens and not by us, and then from Jo and Bridget and Erica, figuring out PATH plans; it should be your vision Chris, instead of my vision. Ever since 2008 it’s really been about really getting deep in learning and learning what’s even better and what’s even better. Questioning ourselves and being okay with that and being okay with change and imperfection. And then, that’s coupled with the story of being in Bellevue. We realized people needed people to care about them again. We noticed that we didn’t care about our neighbors and we didn’t think our neighbors cared about us. We started to say, what if what we had to do was figure out how to live this, while we were helping other people figure out how to live it in their neighborhoods. That’s where it got really tangled up. And we said, let’s just live in Bellevue forever and work on this neighborhood building and relationship building stuff and we’ll hopefully learn something from that. And we’ll take that and learn something from it for disability work and inclusion. And then what we learned from inclusion and disability was listening to people and honoring people’s individuality and finding a way to make a stand against structures and rules that keep people out and then we would take what we heard there and bring it back to Bellevue. And all these things play against each other and it’s really awesome now because we get to see all the ins and out of this stuff. We see people with disabilities overall marginalized in society, but then we also see how people were just marginalized in Bellevue and they don’t have disabilities. Or we can see people marginalized in Bellevue on a real local level, not on a program level. We can see it through the eyes of a citizen.It’s like we’ve woken up. We’ve been able to see things that are real simple to do. Like on the way up the street to school, we notice Onyx across the street who has Down Syndrome. He’s walking by himself and he’s kinda distracted a little bit like he’s looking around, looking at us. We’ve met him a couple of times, but we don’t know him very well. About half way up the street we notice the crossing guard is calling to him, “c’mon Onyx, hurry up! Hurry up!” I guess she knows him pretty well and she wants him to focus and keep moving. I said to Aaron, [my son] “do you want to walk across the street and walk with Onyx?” <figure class=" sqs-block-image-figure intrinsic " > He’s getting to the stage where he’s noticing differences and he probably also feels that, I’m guessing here, that Onyx isn’t the cool kid. He’ll learn this but not without me teaching him. We walked over there and started walking with Onyx. And of course we notice, it’s slow to walk with Onyx. We might even be a couple of minutes late is in the back of my mind. And it’s probably in the back of Aaron’s mind too. But we get there and I introduce Onyx to Bridget and we just said “have a great day!” It’s just simple moments that we’ve discovered that are really important to us. Don’t miss a moment you have to put yourself out there…you have to wait for them. You have to cross the street and say I’ll walk with you, even if it makes me a little bit late. And it’s only for a few minutes and it doesn’t even matter in the grand scheme of things. Onyx would have gone on with his day… But something would have been lost.We have to be awake citizens and notice the moments when we can create a small connection. And we don’t think that– I’m not foolish, I’m not Pollyanna. I don’t think those moments make a hill of beans difference, unless they are cumulative. If we do them every single day, I think they are transformative. I think they make Onyx’s life better. I think they make our lives better. I think they make Bellevue better in a really significant way. <figure class=" sqs-block-image-figure intrinsic " > CS: What advice would you give to a young person starting out?TV: That’s a good question. What I was tempted to do was to just learn it on my own. I would have loved to have had a mentor earlier but not just one but like 10 mentors. If I was a young person I would say from the age of 12 or 13, find people, your parents, your parents’ friends, someone that you look up to, and ask that question intentionally and then ask them that question over the course of a few years. Any person in their twenties should do that too. If you want to know how to have a good relationship with your spouse, you should go find some people who have a good relationship and go ask them that. If you want to know how to be a chef, you should go find some chefs and go ask them… I believed this story that if you just worked hard enough and studied by yourself you’d become something. And what I just understand now, is that it’s the relational aspect of learning…it’s just so important and it comes with a whole network now. It comes with credibility and experience and that brings so much more. You can study anything. You learn anything. You can try to do anything. The only way to really be successful is to have all those magic ingredients experience, advice. And I think that comes from having mentors… I don’t necessarily like the question “will you mentor me?” I like the question “can we talk about this?” Then I really love when you get in a few years of that conversation then you can look back and see that it was mentoring. There’s this pressure around mentoring that someone has to mold me and I just don’t think that should be a part of the conversation. With my most beloved mentor, Jo, I remember thinking, I never knew she was mentoring me. We were just having coffee that’s all we were doing. And then, maybe two years ago we were sitting at that table back there [at RedTree] and we were presenting an idea and somebody said, “Now Tim, how are you learning all of this stuff? Do you have a mentor?” And I was like “yeah” and I pointed to Jo. She’s my mentor. That was the first time I had already said it or knew it and we had being having coffee for four years. I want people to say I want to have conversations and I want to learn. I don’t like it to be named. Or singular either. I’ve learned it from Tom Kohler, and Candice, and Mike Holmes, and Bridget and books that I’ve read. I’ve learned a lot from a lot of people. It has to be bigger than one—mentors.
Getting unstuck from "successful outcomes" part 2
Getting “unstuck” from our previous work required loads of reflection (part one). And along the way, our transformation emerged. In bits and pieces, elements of our new support model grew out of the design thinking process: empathize, define, ideate, prototype, test, repeat. Empathizing with parents was one of our most valuable lessens. After 20 years of “successful” outcomes for people with developmental disabilities, parents, who had also aged with us as we served their son or daughter over the years, were asking, “What’s next?”“Who is going to care for my child after I’m gone?,” parents asked.I recently sat in on a support meeting with my friend living with disabilities – and when the topic of “employment” came up it was explained to be an “initiative” by Governor Kasich:“…to ensure that all people find a place in community through employment or volunteering- no matter how severe their disability.”I was SO excited to hear this other disability support agency say the words “find a place in community”– it was a departure from the typical conversations spent discussing my friend’s “behaviors” or eating habits. But where the conversation led from there crushed any new momentum that could have been built from this initiative’s true intentions. Instead, staff began offering suggestions for how she could keep doing what she’s already doing – but have it appear like employment. So the day program she goes to said she could start going on day trips to volunteer in groups of other people with disabilities – calling this “career discovery.” The other day program she attends said they have office tasks around their facility, like shredding and tidying up that they can start paying her for, which will fulfill what technically it means to be “employed.” I want to be totally transparent about these workarounds because they are rampant in the disability service system- and because they are happening in part as a result of a penchant to measure for successful outcomes. Yet they don’t get people anywhere new, and they don’t bring anyone closer to success, at least not in the way most people define the term.Had I been in that meeting and not known any other way to help my friend “find her place in the community” besides just maintaining business as usual and not upsetting the status quo, I would have left feeling defeated, angry, and spent. That was how I used to leave those meetings, before I started working at Starfire. But Starfire has given me hope as an advocate that my friend, as a person with developmental disabilities, isn’t trapped in a life no one wants. That’s because we know (and openly will say) that even in the best case scenario, propping up the status quo in disability supports is only getting people more stuck in their label of “disability,” and inching us away from any type of meaningful work.Starfire’s work is worth working for because it seeks ways to connect people with developmental disabilities to positions that interest them, at places where they truly belong. That’s why our model is so different than most other organizations supporting people with developmental disabilities. We aren’t just after the results. What we are after is one day being able to answer that question so many parents have on their minds, by seeking out those people who might be the answer. We aren’t going to accelerate our goals and outcomes – and in turn leave behind the people with developmental disabilities. We will go at the pace of each person we support, individually.By choosing not to serve for outcomes, we actually started to serve people with developmental disabilities, and this meant a lot about our work changed for good. It meant Starfire stopped measuring people with developmental disabilities’ “social life skills,” and started measuring whether or not a person has a social life – and how that affects their well-being, their opportunities, their lives, and our communities. It meant we couldn’t just check off boxes anymore. So we stopped measuring things like does a person make “eye-contact” – because we know that checkboxes like this do not help staff understand their work –and they don’t determine what a good life really is. Instead, what we measured had to be weighed on the scale of how well connected our members are, and how well we are doing at navigating and securing meaningful ways for them to contribute in the community. And finally, it meant staff needed to see themselves not as teachers of people with developmental disabilities, but as models of inclusion for the community –so that ordinary citizens can begin to understand what it looks like to love and include every person “as-is,” and let go of our desire to “fix.” Adequate InadequateMessy, serendipitous, risky, gradualTools developed by social inclusion leaders and researchers help us track change in a person’s social network, participation in the community, and well-being over time. I’d love to share them with you if you’re interested. Our staff, the member, and their family come together bi-annually to complete these instruments, which helps to educate families on our process so they can carry the work forward with us. We have been careful in our phrasing and language as well- to avoid any inadvertent devaluation through data collection.All of this isn’t happening overnight. But when it is done in tandem with meaningful outcome measurement, the hard work can be visibly proven to pay off. Below is an graphic representation of a conversation our staff had around our data outcome system. On the left are the stories about data they are letting go of – that numbers are used for compliance and building false narratives. On the right are the stories they are letting emerge: that data can validate the small victories of our work, honor the struggle along the way, and help us claim our success. In that way – data can be freeing. <figure class=" sqs-block-image-figure intrinsic " > Starfire’s staff conversation around dataToday, we can say we are over half-way through our transformation from an organization that groups people into a one-size fits all service, to one that works closely with one person and their family at a time to accomplish together sustainable and personalized impact.Today we can say we are changing lives, measurably.Not only that, but our staff’s ability to do their job well, and family’s understanding of what we are trying to accomplish with their son or daughter is becoming clearer as we edge toward the future. On average, we have seen 75% of the people we’ve served in this new way increase their social networks and community participation during their time with us. And we are just getting started.To do this job of outcome measurement for Starfire the way Tim has asked of me, he suggested early on that I tattoo this quote on the back of my eyelids:“I’m not opposed to success. I just think we should accept it only if it is a byproduct of our fidelity. If our primary concern is results, we will choose to work only with those who give us good ones.” -Fr. Greg BoyleStarfire got unstuck from what looked like successful outcomes – and that freed us up to do work that was true to our values. We saw the way that good numbers and good results can have the potential for harm. We know that when the system is detached, unaware, and devaluing of the people being counted numbers can be used to serve the system. It’s all of our responsibility to know this, and to question the data being shared. Not just so that we can know where our money is being spent, but so we can actually strive to make changes in people’s lives.