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’s
Actually 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 PURGATORY
T: 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?
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