Debra and I read this during our Autreat presentation in 2004. It’s a quote from a book that’s out of print, but well worth getting your hands on: I Witness: History and a Person with a Developmental Disability by Dave Hingsburger. (Some autistic people will be interested in the fact that it includes a description by someone who once wrote a program for someone to have a cattle prod used on them, and now thinks there is no excuse for that. But that’s not what I’m quoting here.) And I think it ties into a conversation I just had with a guy from my service agency today, who asked me what I thought about assorted people who write theory about “person-centered planning”. This is an excerpt from an interview that Dave Hingsburger did with a woman named Noreen.
“Do you remember your first days there?”
“Do you remember being happy, being frightened, being sad?”
“I think the first thing I felt was lonely.”
“That must have been hard.”
“But it’s not a nice feeling, to be lonely.”
“No but that’s pretty much all I ever felt, from long before I went in there. So it was just the same really.” Pow! She moved from the community to the facility and it was the same. It is not a place. How do I describe the thoughts that poured inside me and all around me. Noreen stared at me as it was clear that something was happening inside me. I just knew, all of a sudden knew, that one of the errors we had made was assuming that HOME WAS A PLACE. And it isn’t, it isn’t at all. By focusing solely on community living, we focused on COMMUNITY and not LIVING. By focusing on community, we focused on the popular definition of community being a place that was outside a facility. A community is not a place. It is a sense. It is a feeling. It is belonging. It is having anchors. It is being wanted. It is being necessary. I thought that I was hearing about Noreen’s institutionalization as if it was the first time she was segregated. Noreen’s life was made different not by the fact that she was placed behind walls, but because she was of the type that people thought should be placed behind those walls. Noreen began her journey the first time she was turned down for adoption because of who she was. It means that we do not move a person from a place to a place as this ensures failure or even worse CONTINUANCE OF THE SAME THING; we need to move a person from a situation to a situation, an attitude to an attitude. I’ve made so many mistakes.
“Are you alright?”
“Yes, sorry Noreen, but I have so much to learn from you and sometimes the lessons are hard.”
“What did you just learn?”
“I don’t know if I can explain it.”
“Noreen, when you said that you felt lonely just like you always had, I think I realized that the problem isn’t where a person lives but how a person lives. I think I always just saw the institution as a bad place and the community as a good place. Just like the black hats and the white hats in the movies.”
“I know. We’re not supposed to think this, but sometimes people get mad at me because I say that you don’t just move people out of the institution but you move them to somewhere better.”
This shouldn’t be taken, of course, as an endorsement of institutions or saying that people should go back to larger ones. I’ve seen this kind of thing misused to say we should make more big institutions and put everyone back in those. Which I don’t believe and I don’t think either Noreen or Dave believe. But a lot of the things that have been substituted for them are just as bad. (In fact this is why I refer to small institutions as institutions just as much as big ones.)
But what that quote illustrates a lot of, to me, is what is wrong with the policies that have been shifted around on the basis of words and not on the basis of realism and practicality. Realism and practicality are often used as synonyms for “settling for less”. But in fact I mean the opposite of that when I talk about them. I mean that I’ve lived through changes that were all form and no substance, leaving disabled people in the same position we were always in. I saw a guy on TV the other day talking about being patronized by white liberals, and his comment was “If you show me a duck, and I can see it’s a duck, don’t tell me it’s a chicken. Calling a duck a chicken doesn’t make it a chicken.”
Practicality in this sense means dealing with the fact that changing policy, changing the words used, changing that kind of thing, from the top of a power structure, does not necessarily mean that anything changes for those of us at the bottom.
Practicality means dealing with the fact that, to pull an example out of where I live now, having people unfamiliar with the people in question, interviewing developmentally disabled people, in the office of our service provider, allowing the service provider to hand-pick which disabled people get interviewed, without making much effort to learn our individual ways of communicating, not taking into accont the power imbalances involved, not taking into account things like one staff person told me where the guy being interviewed was just sitting there laughing at how stupid the interviewers were being, not picking people who are necessarily demographically representative of clients (people who use communication aids for example are very underrepresented), and so many other things… is not a good way to ensure quality in services.
Practicality means that when you work in this field, you look at a problem and try to find a good way to solve it. Not just a way that makes you look good or makes people think you’re a great person because of the great things you write.
There’s so much that seems to be geared towards either generating pretty words on paper (that people then, still in power, subvert to do the same old things all over again), or generating a pretty reputation for the service providers, and none of that will work in the end. Stuff like this requires constant conscious reflection on ethics and power with a willingness to admit when you’ve screwed up. There is no room in this situation for self-congratulation, patronization, tokenism, or empty words, nor for “Good intentions make up for everything.”
And it’s amazing what happens when you actually start focusing on solutions with ethics in mind, instead of rewriting the words that describe and contribute to the exact same situations all over again. Changes actually start happening. People actually start living better lives instead of living the same old lives under new shiny pre-packaged labels. And institutions start getting out of the power structures instead of just the building shapes. Unfortunately, what a lot of people want is a formula. But where you have a formula, you have an institution, and a trap is still a trap whether it’s got little shiny pretty ribbons tied all over it or not.