I have a lot to say on this topic, and the writing is fairly slow going. I’m trying to write about precisely why some of the people hurt worst by statements like “My child will need a cure, or else she will live in an institution the rest of her life, so you may not have to worry about that but my child does…” are actually the autistic people living or likely to live in institutions.
There is a rhetorical tactic lately where people who believe in curing autism make themselves out to be the only ones who notice or care about autistic people who live in institutions, and those of us who are anti-cure are being insensitive to that group of people. As an ex-institutionalized autistic person, this puzzles me greatly.
Ten years ago there were supposedly two points of view about my future. One said that I would be cured, or brought close enough to a cure that I could live with the same level and kind of support that non-autistic people get, and live “independently” by the time I was in my twenties. Another said that I was not capable of learning these things and would therefore require some form of lifelong institutionalization. Those were the two viewpoints and my two choices.
The first viewpoint was considered hopeful or optimistic. Both of them seemed equally dreary to me, because I was becoming well aware that I would not change enough to live the way non-autistic people live. Because of the false dichotomy contained in these ideas, I began to have absolutely no hope for my future. I knew that I would not become non-autistic — no matter what I tried or anyone else tried, it just wasn’t happening and it was clearer to me than to anyone else — and I thus “knew” that my only future was in institutions. That’s what each of those two viewpoints taught me equally.
What I needed — and what I believe everyone in that situation needs in one form or another — is to see adults like myself living outside institutions, to hear people talking about a future in which I was both autistic and non-institutionalized even if I remained exactly the same as I was back then. I needed to both hear and see stories of freedom that were not contingent on having a certain kind or level of ability. Despite it being the law by then, I heard and saw nothing of the sort. I either saw people who were able to struggle and manage the way ordinary people did, even if they barely hung on, or I saw people incarcerated. That was it.
It’s a serious thing to learn that who you are merits a life sentence without parole or recourse to the law. That is the message sent out by people who insist that certain kinds of people can either be cured, or institutionalized, that there are no other options. It’s also the message sent out by people who believe that the only way out of institutions is to gradually learn skills, and then get transferred to lower and lower security institutions until you’re finally released into community living. It’s the message sent out by people who believe that what often gets called functioning level or degree of disability (a concept that is more problematic than it looks on the surface to most people), is measured primarily by where a person lives. And people who say that someone they know could not possibly receive services in their own home, because that person is too “low-functioning” — probably the same people who magically transformed me from low-functioning to high-functioning as soon as I left institutions, despite me being the same person. And a lot of other things people say, directly and indirectly, day after day.
The kind of despair that sets in when you realize you’re not good enough to be let around running loose is pretty serious, especially when other options don’t even register as possible. I can’t imagine these attitudes are useful or sensitive to much of anyone, least of all people who are living like I did when I realized simultaneously that I would never be cured and what that meant in the worldview I’d been raised within. It might make it possible for some people to pass long enough to get out (not the only way to get out, but a common way), which is good, but in the long run the cost for people who don’t get out, and who get put in in the future, is devastating.
There are a lot of other thoughts on this, but I need to of course figure out how to weave them together into something coherent and readable in English. That, at any rate, seems to be my current writing project.
Ballastexistenz 