01 December, 2010

Finding it (well, sort of)

So I've read the piece Hell-Bent on Helping: Benevolence, Friendship, and the Politics of Help (which is a really great piece about how inclusion doesn't work if you always put the non-disabled students in the position of giving charity to disabled students, because they can't develop real friendships) and I realized maybe I should actually go to the domain it's at and see what kind of website it is. It's pretty great! It's a guy with CP and his wife, who do training and speaking about including people with disabilities at school work etc. And some other stuff.

So (I'm still on the same topic, you guys) there used to be this post at an "autistic" blog, which doesn't seem to be there anymore, and this post was saying something like, "I don't like when people compare the Deaf and autistic communities, because being Deaf vs. being deaf is about using sign language, so being Deaf instead of deaf is a decision, but there isn't a language that autistic people can decide to use and there aren't two ways of being autistic like being Deaf and deaf are two different ways of being deaf." I'm not naming the blog because I think I may be oversimplifying the post, and I don't want to attribute statements to them that they might not have said, or might no longer agree with since they apparently deleted the post.

But based on my reading of the post? I could not disagree more. My understanding of Deaf culture is very basic, but it seems parallel to Autistic culture for reasons I will discuss below. I don't use a capital A specifically to reference Deaf culture; but I think my reasons for using capital A are because I think there's a big difference between the identity I have now, and the identity (or non-identity) I used to have and the one some people still have.

For people with autism, it's not as simple as sign language vs. lip-reading and speech as a mode of communication. But it is the case, just like for deaf people historically, that lots of people with autism grow up with parents and professionals trying to teach them to communicate in a "normal" way, and just as it is often unpleasant and difficult for a deaf or hard-of-hearing person to have to communicate only through lip-reading and speaking, it is unpleasant and difficult for someone with autism to have to always express themselves exactly as someone without autism would, and understand exactly the things that someone without autism would. (Plus of course there are people in both groups who can't even reach the point that is deemed to be "success," even mediocre success. And those people, from that perspective, are just doomed.)

Here's a simple way of putting, in my mind, what constitutes the difference between being only a person with an autism spectrum disability, and being a person with ASD who is also Autistic.

I used to think of myself as being like a mosaic. I was very smart, I thought, so the mosaic was very complicated--the squares were getting smaller and smaller, and to most people, the mosaic looked like it was an ordinary picture. But it was really just a calculation, and there would always be things that looked a little too sharp or disjointed, parts of the image that required soft curved lines; so occasionally, my mosaic would fail as an image. It would get to be more and more like a real picture, but it would never get all the way there; if you zoomed in close enough there would always be squares.

When I thought of this, less than two years ago, I just thought it was an interesting way of explaining why some things were hard for me. It didn't occur to me how incredibly sad it was that I thought I wasn't a real picture.

Now I know that I'm a real picture, and I live as a real picture. As I've discussed, this is both more and less self-centered than the way I used to live. In one way, the things that I think are appealing and cool and smart, or the things that I'm naturally moved to do, now form the center of my experience in a way they didn't before. I make all my decisions as myself. However, this leads to a calmness and makes me more open to other people (whereas I used to sort of hate most people because I was constantly thinking, "they get to just be themselves and that's allowed").

I could go into a bunch of detail about what "living as a real picture" looks like for me in real life, but that isn't really the point of what I'm saying. What I'm saying is that I imagine a person with autism choosing to live as a real picture (i.e. to be Autistic) is comparable to a deaf or hard-of-hearing person choosing to communicate primarily in a way that is comfortable for them, instead of in a way that is comfortable for other people and difficult for them (i.e. choosing to be Deaf).

To cycle way way way back, I have really enjoyed reading Norman Kunc and Emma van der Klift's website, because they are very smart, but one thing that struck me was Kunc's description of his childhood and adolescence. He went to various types of therapy where he was constantly encouraged to change the way he walked, talked, etc. As a teenager, he tried to keep track of and control situations (like eating and moving in front of people) so that his cerebral palsy would be less obvious. As a young adult, he suddenly realized that, as he puts it, "I had the right to be disabled."

I don't exactly want to say I think it's cool to read about Kunc's awful childhood experiences or deaf students historically being forbidden to use sign language, or the article I linked to a few days ago about someone with CP being forced to get a painful, useless operation because it might make her walk more normally--but there is something extremely powerful in seeing that passing as ethics and passing as cure have been used to hurt so many different people with such different disability experiences. I guess I can say it's sort of a relief. Parents and professionals who support passing as ethics/passing as cure for people with my disability will end up saying, "Oh well autism is different." They basically defend their obsession with passing on the basis that autism is a "social disability," or whatever.

And while I don't think that "autism is different," I think when I started figuring out passing as ethics, I thought I was almost the first person to start figuring out these things, and I thought it mainly related to autism and maybe intellectual disabilities. There's something really deep and lovely--they're not lovely facts, but it's a lovely feeling--about realizing how many different kinds of people have had to put up with this exact same thing, and that people have been fighting it for much longer than the twenty years Autistic culture has been around.


  1. (whereas I used to sort of hate most people because I was constantly thinking, "they get to just be themselves and that's allowed").

    Oh god, I've definitely had that.

  2. (whereas I used to sort of hate most people because I was constantly thinking, "they get to just be themselves and that's allowed").

    YES. Thank you so much for writing this.

    As I could read adult books at nine while not understanding why I should say hello and goodbye, people would get so stuck on telling me how weird I was. Now that doesn't sound like such a big thing but it has made me think "oh well, I'm not allowed to be like this so I must pretend to be different".

    But reading this has reminded me that that attitude is wrong. And unhelpful.

    Yes, I did just sign up to wordpress to comment on this ... what have I done.

  3. yeah, don't do it, blogging will ruin your life.

    Thank you though.

  4. I don't know about that. I don't know how I would have gotten through my late 20s without Livejournal. It was a prime place for airing your angst, back in the day.