What It Means

Trigger Warning: Ableism/erasure

This is a piece I wrote for the MOOC on Disability. Yeah. Um. I'm a wee bit nervous about it because I see plenty of disabled perspectives on other disabilities, but autism seems to get mostly relative (esp parent) perspectives and that's seriously not OK.

Disability has meant different things to me at different times. When I was little, really little, it didn't really mean anything to me because I didn't know anything about it. It wasn't really talked about, which is weird, considering that I'm partially named after my aunt who had multiple disabilities. My middle name was her name. But it wasn't talked about much.

Like, really, it wasn't talked about. My first memory related to disability is one that I didn't even realize at the time was related to disability. I was eight or so, and I'd just read an article in a magazine talking about a family with an autistic son. He sounded a lot like me. I asked my mom if I was autistic. I don't remember all the details, but the answer gave me several impressions: 1) Autism is bad. [Not a good impression to give the autistic 8 year old...] 2) Autism is the kid rocking in the corner [something I do when upset, actually] who can't speak [I vary from no speech at all to here let me tell you all about everything have all the words depending on a lot of things.] 3) Gifted kids are weird, and that's all that's up with me. [Wrong, wrong, wrong.] I don't think the word disability came up in the conversation, though I'm sure it was in the article. It didn't stick out. The fact that this boy had so much in common with me and that I had most of the traits they said were signs of autism? That's what stuck out.

When I was nine, they sent me in for testing. Disability wasn't talked about there, either, at least not to me. I've since found out that my elementary school was convinced I had something pretty much from the start, so I'd guess that's related. I've also since found out that there were some “findings” the person evaluating me wanted to talk to my mother about but left off the report to the school.

I think the first time I heard about disability where people actually used that word was when my mom was talking about her sister. One story that I've heard a ton of times was about how my aunt, who didn't speak until she was eight or nine, carried around a Sears catalog and pointed to words to communicate. Considering other things that we know about her and the fact that autism runs in families, my guess is that she was autistic too, in addition to the other stuff she had.

I wasn't really sure what disability meant, still. People didn't talk about it. I might have defined it as “that thing no one really talks about.”

Eventually we managed to find out that yes, I really am Autistic. The meaning of disability had to get a lot more defined at that point, since it became a label that I knew applied to me.

Disability is a part of a person, but it's also imposed on a person. It's complicated. The set of abilities that we have? The stuff that we can and can't do? That's part of us, part of who we are. The discrimination, the lack of accommodation, the stuff that turns it from “this is a thing I can't do” into a disability? That comes from outside- it's a social construction. A lot of people get confused because they think that social construction somehow means not real, and that's not what it means at all. A lot of the time, it means assigning values and expectations to things that are already there, maybe trying to fit people into boxes that don't really work, like when people think disability means “can't do anything.”

At this point, I think disability is what we get when society fails at making things accessible and Disability is the community and identity of when those of us who are excluded for this reason band together. Or being autistic means having a certain neurology, being Autistic means being part of a group of people who support each other and work together and have some culture stuff and are also autistic. Language. It's cool like that.