02 February, 2011

shaky bases

(kind of worry that this post is developing an Oppression Olympics tone, which is so not my intent, to say that one group of disabled people has it worse than another group--I'm just trying to articulate what I'm feeling and why it's different from what people with other disabilities might feel.)

This is hard. I identify as disabled, or Autistic. Or developmentally disabled, person with autism, picture of NOS energy drink bottle, or a headcrip (thanks Samantha). Also sometimes a bad brains, but let's stick to what I'm saying in a better mood. Or let's stick to what I say when I'm trying to be objective, which is: autism. ASD.

Something that's really hard about identifying as disabled and having autism, that I don't think is an aspect of being blind or having cerebral palsy or being deaf, is the feeling that the base of your identity is subjective or could be taken away at any time. Like--identity comes in two parts, the objective fact and the actual identity. You're deaf or hard-of-hearing and then you're also Deaf. Or you have a physical disability and then disabled or PWD or crip can become one of the important things about you.

Anyone can argue with the idea of disability identity or indeed any kind of identity, but generally they can't argue that someone who has cerebral palsy and identifies as a "crip" doesn't have cerebral palsy. They can argue with the word crip and the idea behind it, but they can't deny the CP; or if they do because it's not that obvious from the person's physicality, I can't imagine it can shake you up as much. Because...if you have CP, you know you have it.

Whereas the idea of autism is this incredibly odd thing that almost no one can live down to in real life. I always hear (and read) doctors saying things like, "this kid had an autism diagnosis but he hugs his family," and instead of the response being, maybe I had the wrong idea about autism, it's always, "so many kids are misdiagnosed with autism!" (and this is not a new thing, I read it in a book that's 15 years old). And, technically, they have the authority to say that, and so many of them do, so it's like, you objectively have autism only as long as a particular doctor said it, but you're just waiting until the next minute when another doctor will say you don't. Because all these things--not necessarily accomplishments but feelings, qualities, where your eyes go--will mean that to some person or other.

The doctor I went to recently to get learning tests didn't have particular experience with autism, and I didn't think that would be a big issue for me. I did want a rediagnosis of PDD-NOS, which I was able to badger him into, but I mainly just cared about knowing what my learning and thinking problems are and I didn't really care if he called it ASD or NVLD or ADHD.

But, you know, he called it the last two, and it made the process of talking to him really strange. We talked a lot about personal stuff before the testing started, and obviously I mention I have autism when I talk about myself; it's part of my life, and sometimes I say, "I also think this might be going on, because I talked to some of my friends who also have autism, and they have also experienced this..." The doctor, while very nice and very good at thinking about learning disabilities, obviously didn't know anything about autism--I'm not being a bitch, it was just clear that it wasn't his field. So there would be this little record-scratching sound whenever I said the word.

"You keep saying you have autism. Who told you that?"
"Oh, this isn't about autism..."
"Autism? I thought we decided to throw that out."

Like, I was seriously at a point of wanting to be like, "Whenever I say I have autism, just pretend I'm saying I'm Catholic or I have arthritis or I have dual citizenship or I'm a twin. It's not up for debate, it's part of my life."*

It just is really weird to have the base of one of your identities be something that everyone always thinks they can argue the legitimacy of. The untoward lady helped me about this a little bit by saying that maybe the most objective way to define autism is by whether people who identify as having it recognize it in each other. And I guess we are the people who have thought about it the most and lived with it the longest. But we can still never prove it even if we know it ourselves, and that's something that makes us different from most other people who identify with disability culture, I think.

*these things=actually not true


  1. I think that one needs to find ones' place in the world, and you have found yours in autism culture. I, however, do not fancy myself always thinking about what I might be less good at and then use it as an excuse.

    Like, it was this incident a few days ago at school, where I was unsure if I was being made fun off or not. I got really angry and thought about becoming physical (violent) or leave it alone. Point being: I didn't know what was expected of me, and what kind of reaction would be the right one.

    But how would it help me always thinking about it as if I'm "disabled"? It doesn't help me at all. For me it feels like as if you are trying to make excuses for what kind of things you're less good at. And yeah, if you really have ASD and haven't been misdiagnosed, you were born with it, but I believe that we can change certain things, and that thinking "oh, I'm disabled", doesn't really help one - at all. But, as I said, we all want to fit in somewhere. I'm not blaming you for wanting to fit in with autism culture.

    So I don't mean to offend or anything. When it comes to ones' identity, I suppose it would feel a bit weird if someone suddenly took away my diagnose, but I would also have it easier in life, and it's not like I would miss a piece of paper saying that I'm "bad at this" and "bad at that", because I already know what I'm bad at, and Wikipedia about Aspergers/Autism doesn't really give me much more knowledge about myself, only excuses. My life isn't written down on a piece of paper. My identity is not written down on a piece of paper. I refuse to live by these standards of an Asperger-victim. I am more than that.

    People aren't perfect. I suck at understanding difficult and stressful social situations, but I can learn to deal with them. I have a hard time starting up with this, but I can learn to deal with that as well. I hate people, but I'm trying not to. I suffer from severe social anxiety, but it gets easier for every day I go to school. I live alone in my apartment, and it has started to make me negative towards it, and even wanting my friend to come over more often. These are huge steps for me. Although I may never want people too close to me physically, why do I need a diagnosis to say "you were born with this disability"?

    With kind regards,


  2. Hi Alex,

    I guess I would appreciate it if you would read over stuff like this before you post it on the blog of someone you don't know. I don't care if you identify as disabled--as you can probably tell from the fact that I didn't go on a blog of yours and start giving you advice--but your understanding of why someone else would consider themselves disabled is not very informed, and is downright insulting. The reason I and my friends consider ourselves disabled isn't because we want an "excuse" for something, but just because we feel it's the accurate way of describing us, and it's hard to understand your life if you're not being honest about how things really are.

    Let's say there's a guy with a bad leg and it hurts him to walk long distances. If he refuses to think about his leg because he thinks it's making an "excuse," then he could end up hurting himself because he doesn't take his disability into account and overtaxes himself. He'll probably also feel lazy if he doesn't walk as much as other people do, if he's holding himself to the same standard.

    On the other hand, if he thinks of himself as disabled, he can make decisions about what to do so he can make the best use of his abilities (like deciding to take the bus, use a cane, or stay in for the day). If the guy does do something that's hard for him, like walking a long distance, he can feel good about his accomplishment. Because he considers himself disabled and approaches his life this way, he both feels better and is more productive.

    (Christine Miserandino, a woman with lupus, wrote the excellent piece The Spoon Theory which explains what it's like to think about life this way; and a lot of disabled people now use the word "spoons" to describe their reserves of energy and ability.)

    I don't call myself disabled as some kind of excuse to not do anything--in fact, because I do call myself disabled, I can do more because instead of having unrealistic expectations for myself that are overwhelming, I think about things practically and concretely. I'm glad that you are making "huge steps," but I don't see why you think that identifying as disabled would prevent you from doing so.


  3. This is really interesting and prompted me to comment (I usually lurk everywhere).

    I have ME/CFS (Chronic Fatigue Syndrome) and when I was at university I lived with two friends- one of whom (G) is a wheelchair user with cerebral palsy and the other (L) who has aspergers and dyspraxia.

    Even though from the outside people would expect me to relate to G's experience of disability more (we both have mobility limitations), I actually related more to L, because of the stuff you talk about.

    ME is a controversial diagnosis based upon self-reported symptoms and a lot of people (including doctors) don't believe in it, so I have this feeling that people are constantly thinking I'm lazy/a hypochondriac/"just" depressed/making it all up and that I don't really need mobility aids or accomodations. It feels very unstable, like what I need to survive and make sense of myself could be jerked away at any time.

    L has also faced people thinking that she's lazy/making excuses/not trying hard enough/not really autistic because she's not like the boy in The Curious Incident of the Dog in the Nighttime.

    We both identify strongly as disabled and have talked about this problem a lot.

  4. I think I saw a comment you wrote in livejournal community--I remember the way you spell aspergers. Anyway, I'm interested to hear this. It is weird when you think about the aspects that define different types of disability experiences and how unrelated they can be to the actual facts of the disability.

  5. Was the comment in response to someone arguing that neurotypical wasn't a useful term since it had no clear boundaries? Cos in retrospect I kind of regret making that comment, because I am neurotypical and I don't want to co-opt my friend's experience.


    Yeah, this stuff is entirely about the social construction of who "counts" as disabled, rather than self-definition and self-determination.

  6. I think it was in the feminist lj community and it had something to do with people seeing you and L and reading you but not her as disabled even at times when she may need more support. I have a habit of noticing very specific things about how people write and then identifying them a long time later, like a creeper.

    I'm having some weird feelings about my former best friend, although I don't know if I should post about them. But basically we have a lot of similar brain problems but he's also physically disabled and has been identified as such from birth and the way we were raised in terms of our disabilities and the way we respond to the same impairment in ourselves is so different and has led to such extreme differences in our lives...I don't know. Maybe this is something I should write fiction about, since it seems like an insensitive thing to start analyzing.

  7. No worries, I'm just very anxious about commenting, hope I'm not spamming you with annoying/irrelevant stuff.

    That's right- a guy was treating L (according to her, I didn't hear) as me and G's carer on a fairly bizarre evening out.

    I want to talk about my relationship as a disabled person with other disabled people, but I don't want to fall into the trap of being like "my best friend is" so I know what I'm talking about or making it all about me. Or like you say, be analytical in an insensitive way.

    It does sound like something that would be better off in fiction. I read a Laura Hershey post that talks about how poetry (and I guess by extension fiction) can go beyond simple dichotmies in a way that argument can't.