When I read about various issues surrounding disability on the net, some of the worst viewpoints about us seem to come from people who work in the healthcare system or as personal assistants.
I’ve started to cringe when I hear a sentence starting with “I’ve been in in-home support worker for 20 years, and…” or “I’ve worked with autistic children for 10 years, and…” or anything else like that. I know that frequently what will follow is some sort of misrepresentation of our lives. Whether it’s some myth about autism being repeated, or the notion of “…and I’d never, ever want to live like Those People live, not in a million years,” it really makes me wonder.
There’s an LNA cleaning my bathroom as I type this. She just finished giving me a shower. I wonder whether she harbors these “better dead than disabled” sort of thoughts or not. I wonder what she thinks my “quality of life” is. I know that “quality of life” is consistently underestimated by medical professionals as compared to how disabled people see ourselves. I wonder how prevalent this toxic mix of pity and revulsion is. I wonder how many of my staff can’t see me or my friends the way we see ourselves.
The way we see ourselves is of course pretty much as people. People who operate differently in some important ways, even people inconvenienced in some pretty important ways, and of course people shut out of society in some pretty important ways, but people. We are not necessarily any more unhappy than anyone else, and when we are, we tend to try to change our circumstances, not mope about how disabled we are.
But I’m not sure that’s how other people see us. When I read descriptions starting with “I work with Those People…” (including descriptions written by physically disabled people who “work with autistic children” or autistic people who “work with physically disabled people”) they depict our lives as unrelenting suffering and horror, burdening all we come into contact with and returning nothing of significant value. So… yeah, I wonder how many of our staff think of us as something much different than who we are. It’s a creepy thought.