An interview of Noreen, a woman with a developmental disability, by Dave Hingsburger, about her time in institutions:
“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.”
[I Witness: History and a Person with a Developmental Disability by Dave Hingsburger.]
When people find out the dystopian hell that exists for many of us underneath the utopian dream of community-based developmental disability services, a lot of them respond by saying we need to build institutions again. Sometimes they think they can make the institutions better. Sometimes they don’t bother with that (hello, VOR, nice to loathe you again). They think there is something wonderful or protective about institutions that has been lost. That is not true. Anyone who uses my words to promote institutions is misusing my words, stealing them, twisting them.
The problem is not that we have moved too far away from what institutions are.
The problem is not that we just haven’t found the magic formula for the perfect institution yet but these new ones will be wonderful.
The problem is that in most of the service system we have barely moved away from what an institution is, at all.
An institution is not created by the shape of the building. It’s created by who holds the power, and what kind of power they hold.
Many community-based service agencies for people with developmental disabilities work like this:
- You take what a traditional institution was.
- You take all the people out of it so that we’re all living in individual apartments or houses.
- The same people at the top have all the same kinds of power.
- The same people in middle and lower management have all the same kinds of power.
- Staff are still staff with their combination of lack of power within the agency and total power over clients.
- And because all of those things are the same, lots of things don’t change at all, or don’t change nearly enough.
I will fight to the death for my right to live in my own home. For Medicaid. For the HCBS waiver programs. Not living in a traditional institution means the world to me.
But I will no longer pretend that my agency isn’t institutional in the way it uses power over people like me.
I will no longer pretend that I am not trying to scrabble together some kind of meaningful life living on the ragged side of a nightmare.
I will no longer pretend that what any of us roughly 670 adult HCBS waiver clients in my particular agency get is good enough for any of us.
Because if we all pretend these things, if we play along with the story we’re supposed to tell, more people will live this story.
And more people will die.
So no. Don’t frigging build institutions because of what I say.
Change things so that they’re less institutional. Not more.
And no you can’t build a magical institution that isn’t an institution because you waved your hands and cast a spell that called it an intentional community. That’s glamour. Or in other words bullshit.
People with developmental disabilities have to live with the consequences of your bullshit. That’ll be another post, or three.
But you can’t just change the surfaces of things and expect the insides to change.
You have to change the insides.
And while I will never deny the importance of what people have done. The ability to live in my own apartment. All these things that are meaningful to my survival. The amount of people with developmental disabilities, and sometimes families, who have worked hard to get me the good parts of the life I have.
I also can’t deny that the way many agencies pull this off is more a surface change than a deep change.
And without a deep change, you won’t get anywhere near enough change.
So when I tell horror stories, don’t think “Institutions are better.” Think “We haven’t moved anywhere far enough away from institutions yet.” And keep moving away from institutions. Because our lives depend on it.
And listen to any person with a developmental disability you hear, whether it’s Noreen or me or anyone else, who says our lives are not getting better or our lives are not getting better enough. Because there’s a lot of pressure on us to play shiny happy brochure-ready client brimming over with wonderful changes, and if any one of us is saying otherwise, you want to listen carefully.