31 October, 2010

Autism is a world and you're not invited

(This was going to be my Autistics Speaking Day post but then I accidentally wrote something else. So this is like my pre-game.)

Now, I have a tendency to say things about other disabled people, like, "Well he can't see, but it's not such a big deal to him, he knows how to get around" or, "Well she can't walk anymore--so she's using a wheelchair now." I end up interjecting this tone of forced mellow when I hear other people saying things like, "Oh it's so sad she can't walk..." or, "Oh and he's *blind*...."

Sometimes people say that I am being insensitive and implying that just because someone has a way of getting by, they don't have a hard time because they're disabled. The reason I end up saying forced mellow things, though, is because I feel like saying, "Oh it's so sad..." or, "Oh I'm so sorry..." is really invasive. It's their thing to feel sad about, not yours. Glossing over the hard parts of disability, if that's what I'm doing, is not really any more biased than emitting massive rays of sadness in the direction of someone else's experience.

Especially if you have a lifelong disability, like I do, massive rays of sadness can really creep you out. When explaining I am disabled I find myself wanting to say something like, "I have autism, it's pretty boring. It's not a big deal." However, if I said that I guess it would have to be followed by a qualifier: "I mean, it's a big deal for me, but not for you."

I really don't like when people make a big deal out of the way I move, react, and speak (form and content). I used to think that I should be working harder to act and communicate in a way that people wouldn't have anything to say about. The thing is though that I already try to be polite and pay attention, and I feel like that should be enough--I don't know how many years it would take to blend in completely, if it even happens at all, and I don't know what the emotional effect on me would be. So I prefer to be like, "Hey, can you just chill out about the way I talk, I have autism. Thanks."

The problem is that my disability comes in two parts: the part that most people can see, and the part that I actually have to live with. I don't really think the way I talk is a big deal. However, I'm pretty affected by central coherence/transition problems and anxiety, and those things are a huge deal and often kind of a scary thing.

It is my choice not to try to get school or work accommodations, even though all my issues could be fairly easily accommodated. Because these kinds of brain problems are hard to quantify, I'm extremely leery of explaining them to people who might think I'm being dishonest. At school, the kind of tasks you're required to perform in order to get accommodations are things I'm often not mentally or emotionally capable of doing; so the process of getting accommodations would be harder than doing without them. I would never ask for accommodations at a job out of fear of being seen as incompetent (given the chance, I try to avoid them knowing I even have a disability diagnosis).

Actually now that I said all that I'm not sure "choice" is the right word to use, but I guess the point is that, for me at this juncture, the bad/internal parts of my disability are things that I very much keep to myself as much as possible. "Myself" is not just me though, it is also some of my friends who either have disabilities or just are awesome, who I'm able to talk to and get help from regarding the brain stuff. They are people who can come inside my disability with me, and it's nice to have their company.

But you can stay out there, please. I'm fine. I mean, I'm actually not fine as in "looks different but is able to do the same things as anyone else." I can't do some things and sometimes I feel super bad about it. But no matter how bad it gets it is never an occasion for some other person to feel bad about my disability in some existential, abstract way. I would really rather someone just be cheery about it--"okay you have autism, that's cool, just like some people have blue eyes"--than try to insert themselves into my disability with me when I didn't invite them.


  1. This is really interesting.

    I guess my reaction to learning that someone had a disability would be to ask them if there's anything I could do to help. Of I were their boss, I'd tell that if they needed an accommodation, they could ask.

    I get the whole not wanting people to be all sad about your life as a default though. I feel that way when talking about my social problems. I talk about my social problems on LJ in what can seem like a very negative/self-pity way, but it's really just me dealing with the those feelings and not an invitation for other people to somehow give me advice or feel sorry for me. Sometimes the best way for me to work things out is to verbalize them.

    I am going to do an Autistics Speaking Day post tomorrow. I've actually thought of something to say, which I'm happy about.

  2. Part of the reason I'm glad I didn't use this post is that it isn't exactly true. I mean, it's certainly not how everyone feels, but it's not even exactly how I feel either.

    The truth is that it isn't exactly that I don't want help, but just that sometimes I feel people just see the ways I am different, and don't see me. I would rather they see the whole thing, but maybe I don't trust people to do that.

    There have also been some people who have given me help and I ended up resenting them for it because I felt in their debt.

  3. I'm REALLY looking forward to your Autistics Speaking Day post. Your blog is one of my favorite blogs.

    I haven't figured out a way to react when other people are talking about their disabilities. We've been taught to say, "Oh that's so sad!" our whole lives. I can feel the pull to say something, but I feel like I can't say that, and I don't have an alternative phrase that doesn't sound ableist.