18 October, 2010

take one

I have been thinking about the interesting fact that I am now as developmentally disabled as I'm ever going to be unless I get hit by a car in the next three weeks. Which is to say, people who receive brain injuries before the age of 22 have those injuries classified as a developmental disability. Since I found this out a few years ago, I have occasionally thought about it because I often get confused when I am driving and crossing the street. It would just take a minute and then I'd have two developmental disabilities instead of one.

I think this is just a fact that has stuck with me. Obviously the possibility of acquiring another disability will exist for me all my life. And just as one sometimes thinks, "I wonder what if I decided to be a pastor," "I wonder what if I decided to be a social worker," "I wonder what if I got married to someone who isn't a US citizen" (although regarding a lot of the job things, I try not to think too hard because I think I couldn't do most jobs and should be satisfied with what I have planned)--I sometimes think, "Oh, I wonder what if I became blind, or had to use a wheelchair."

I'm pretty sure I'm not resourceful enough to be a wheelchair user so that gives me a bit of pause (as soon as I encountered something that wasn't accessible, I would just go home) but in terms of having to use other mobility aids, or having a sensory impairment, it's not so different from "what if I was a lawyer, what if I was a living statue." Which I think is unusual and probably offensive. I mean, Real Disabilities are hard. I shouldn't just think of them as being like a different hair color.

But sometimes I do.


I was thinking/talking about what it means to be "born disabled." I identify this way and I feel different from people who acquire disabilities or people who have disabilities that only matter in certain contexts (like specific learning disabilities). However, it is certainly the case that I haven't identified as disabled my whole life. I have at times identified as Autistic to various degrees over the past ten years, but I often haven't, and I've identified as disabled for not even really two.

So how can I have been born disabled? If I couldn't walk, I just would be disabled, it wouldn't be a matter of identity.

If I had to make a choice to identify, am I appropriating an identity that isn't mine, that would just automatically be mine if I really deserved it?

I will tell you why I think otherwise--because the decision to identify was and is always like falling asleep. It is a sense of something that was always there that you always wanted, that you thought you weren't allowed and tried, exhaustedly, to stay away from. I didn't grow up not disabled, I grew up Not Disabled.

I grew up different and, by the time I had a modicum of sense, working around something I just didn't look at or name because I thought I was not allowed to call it autism or Asperger's because I didn't act like they were supposed to and must therefore have recovered, and very interested in disability issues but knowing They Were Not Mine (they just drew me for some reason).

Eventually I found out I was allowed to have one and then the other too. Or if you consider Asperger's a weaker identity than autism, and I do, I was allowed to have three things I had always wanted.

When working with people who have more severe developmental disabilities, I find myself wondering if I have any right to think of us as belonging to each other. After all, I can remove myself from this environment, not take any more disability-related jobs, never talk about it again, and just not be disabled. No one has to know. But then when I think of this life I realize that like childhood it would be suffused with a sense of Not Being.

I am not working with those people. I do not look like them. I will do anything not to look like them.

In addition to being unlivable for me, this option simply isn't the same thing as not being disabled.


To receive one Asperger's diagnosis can be regarded as a misfortune; two seems like carelessness. Seriously--and is this ever embarrassing--I would like to get rediagnosed because I haven't gotten a diagnosis since I was 14. That's not the most embarrassing part, I mean. But I have a diagnosis preference. I want my other ASD diagnosis, PDD-NOS, the one I got when I was 9. I'm not really willing to admit this out loud to my parents, but I want to find a doctor who will give me a PDD-NOS diagnosis.

I can't believe I'm writing this. Who the fuck cares. "It's all autism," as my friend said. The whole reason they are taking the little categories out of the DSM is because they don't mean anything and lots of people could end up with at least two of them depending on which doctors they go to. Some people could end up with all three.

I know, but like, even though I know it's all autism that doesn't mean other people do. "Hi I have autism." "Oh you have Asperger's you mean." "No autism." "But you must have Asperger's..." (Oh fuck, I do, why don't I just say it and let myself fall into a whole pop culture mess where I am just a socially awkward genius and there is no room for me to say, actually, I am afraid to live alone because it is so hard to initiate action including eating, moving, etc.; also my anxiety is sort of a little like using a wheelchair because I know there are buildings I just can't go into and that's that. But I guess I look pretty normal, all things considered, compared to what you've seen on TV) "...and it must be very mild because you're looking me in the eye." (which hurts but whatever it only matters how you look, but then INSPIRATION STRIKES) "Well, actually my diagnosis is called Pervasive Developmental Disorder Not Otherwise Specified and it means atypical autism. I don't have Asperger's. I have autism. But I mean, we all do. It's not that simple."

I know this is ridiculous, but it's sort of my lifeline. I know it's an incredibly stupid reason to want a particular diagnosis, I mean we all have atypical autism and it sounds like I think I'm more atypical than people who have Autistic Disorder or Asperger's. But I'm just worse at talking than some people, and better at passing than others, and if I have to use that horrible word Asperger's to talk about myself, I might as well not talk about myself at all.


I want to fall into disability. I want to fall into community. I want it not to be something I have to say out loud or prove. I don't want to have to make decisions about forcing myself into a visibility that many people ignore or don't accept or downplay, anyway.

I think, as bad as I feel for saying this, that if it was just something people could see, if it was just something I could obviously never do instead of this set of problems rearranging themselves in endless useless patterns. If I could just state my identity or ask for help; if I could just not do things that hurt, and even if I do them, it would just be something I did one time. It wouldn't mean I am better.


  1. Sometimes I like to imagine that I am living somewhere that nobody knows me and I don't talk at all. I feel happier and more like myself. Talking is hard. Sometimes I am insanely jealous of those people labeled aspergers because it seems like it is so easy for them.

  2. I don't think there's anything wrong with you wanting a diagnosis. Or wanting to identify as disabled. It's important know what you need and try your best to get it.

    Now I know you won't agree with this, but I really want an NLD diagnosis because even though if I got one I'd probably be a shoo-in for Asperger's as well, I don't want to go around telling people I have Asperger's, because of the exact pop cultural stereotypes you mention. And I don't think I'm autistic enough to be autistic. But I think if I framed my problems in terms of a learning disability most people don't know anything about, I have a much better chance of having my needs understood than a pop culture diagnosis that everyone thinks they understand but really don't.