18 May, 2010

Our shrinking island

I

Recently I saw a person on the Internet defending neurodiversity by saying that intellectual disability and brain injuries aren't part of neurodiversity. (This was in response to a person who was arguing against neurodiversity by talking about how bad their kid with a brain injury has it.) Later, the person said that they weren't sure about what they said and maybe they do consider ID to be part of neurodiversity. The thing is, though, that while that had especially bothered me since I feel especially invested in ID issues, the idea of saying which disabilities are and are not covered by neurodiversity is inherently not okay with me. Letting ID, or any other disability, under the neurodiversity umbrella doesn't change the fact that according to this person only particular disabilities are allowed.

Although I don't mean to imply that all or most people who identify as supporting neurodiversity think about it as not being for everyone, the comment I saw just seems like a really extreme embodiment of what it means to use the term neurodiversity at all. I get very hung up on terms and neurodiversity is a term that has for a long time hung me up. Why not just say "disability rights," or if you are being specific, "autism rights," "developmental disability rights," "learning disability rights," and so on?

I do have trouble with this myself because "rights" implies that I am talking about concrete changes and I'm frequently not, and neither, frequently, are other people. I believe the personal is political and I generally write about personal things from a frame of deconstructing ableism. So maybe "disability rights" isn't the best thing to say. But at least it has the word disability in it.

I'm starting to think that every tenth or fifteenth post on this blog is exactly the same post. But bear with me.

II

Defending your disability (or, sorry, "way of being") by saying that it isn't so bad or you are really good at other things that make up for the things you are bad at is a tack doomed to failure. Especially if you have ASD, is what I was going to say, because a lot of people with ASD "have no skills" as Alison Singer once charmingly said about her daughter--this isn't how I think about people, but I'm just saying it's definitely possible for people who do think that way to pull out lots of ASD people to use as examples of how someone with ASD can't necessarily be mathematically calculated to be equal to a normal person.

I was going to say that. That, like, maybe it makes a little more sense with something like ADHD that doesn't ever result in people not being able to talk and usually doesn't result in people not being able to live independently. Because with ASD it's very easy for someone to be like "oh look at this person who can't live independently, their life is bad."

Unfortunately, I realize that's not even an argument that the people I'd be addressing are unaware of. They know, and their tactic is retreat. They defend neurodiversity by saying they are only counting some people with ASD. They are only counting the people who are equal to non-disabled people, good at memorizing pi or killing cows creatively--and again, no, that is not what I think the world equal means. But if you accept the idea that the word equal means that, or that a good life is a life where a person reaches certain "milestones," then you will always be in retreat.

(I also think that, while a person like me will be safe for a long time, they're capable of moving the milestones.)

III

I recently met the most severely disabled person I've ever met, a girl in Joe's class who can't walk, can't talk, can't eat, and doesn't lift her hands from the desk of her wheelchair. H. is fourteen, and she can and does look at things and have emotional reactions to them. I haven't known her long and I would not claim to know her well, but anyone can see her smile when she sees a new person or object, or laugh when the kids in her class are screwing around.

I think this is really important and is maybe the core or the base of what I believe in. I have no idea how H. feels about her life, and wouldn't try to extrapolate from the fact that she frequently laughs. At the same time, she does laugh. I'm dissatisfied with this world's conception of disability because I think it tries to erase the individuality of PWDs. Or to say that individuality (including joy) is incompatible with disability that is severe past a certain point--that a life that is something more complex than endlessly grim is not possible for you, or if it is, you're different from other disabled people who really are tragic.

This is a hard thing to put into words because I often feel that some people who use the wrong words are nonetheless expressing things in tune with my values. It is almost impossible to say that my beliefs are about a principle because they're highly specific. They are about a way of looking at and thinking about people, and not writing people off because of a list you can make in your head about what such a person can't do or can't experience.

I feel that I have to express my values using a term that includes the word disability, because I don't want to use any term that could be used to say, "my disability isn't that bad or it isn't really a disability because I'm good at math." I do not think that having a disability that is "that bad" disqualifies anyone from being looked at honestly and valued as an individual. I'm not prepared to say I'm "anti-cure" in some concrete way, but I tend to feel thankful that God allowed disability into the universe. I'm not good at overarching principles and ideas, but I do experience some kind of spirituality and joy, and that joy often comes from realizing that someone is much more complex than I thought. So that's what I believe in.

Every single person who has ever lived deserves to be talked about and portrayed not as someone who Will Never or Can't Even, but as someone who Is. There is no point at which someone stops deserving to be an Is.

8 comments:

  1. hi!

    just left a comment on your other post, but realised it's old. Was looking for an email address - would like to email you something! Mine is emmythegreat at gmail.com

    Emmy x

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  2. I do not really know what to say. Only a person with ID could answer whether or not she would consider herself "neurodivergent." Same with anyone on the autistic spectrum, dyslexia, bipolar, ADHD, and so on. I am not too fond of labeling all non-autistics as "neurotypicals." Obviously you cannot say one is either autistic or typical when there are so many other significant disabilities out there. My definition of an NT would be somebody with evenly displaced essential skills, give or take some strengths and weaknesses. Yet for the most part, the society suits them best, since they make up the majority.

    I recommend you watch this video by Nervous Neuron. Her main pont is that whether one considers herself disabled or merely different, that is really up to the person possessing the particular difference.

    http://www.youtube.com/watch?v=as9bv9nRg0U

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  3. Now that you're being so honest, tell me how my awful mental disability benefits you, making you think it should exist.

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  4. Hi lurker. Is your disability a disability that causes you to give other people frozen yogurt all the time? That's all I can think of in terms of disabilities that would benefit me.

    But I haven't had frozen yogurt in a while, so I guess I don't understand what you mean.

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  5. waaaaiiit
    do you mean you have ASD and you're wondering how my ASD benefits me?
    That's an easier question to answer. I don't think it benefits me in and of itself. It's a trial. Like other trials, it can make life richer. Sometimes it just makes life shitty, but my shitty life is still my life so I like it because it's mine.

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  6. I'm diagnosed with an ASD, and wonder how the way things are with ASD benefits you. I wonder how my being disabled through it benefits you. I'm getting the idea that the same circumstances that are causing many of those of you who are high-functioning to have lots of intelligence/aptitude, are the same ones that are causing the lack of basic functioning and aptitude for the lower-functioning.

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  7. I don't have lots of intelligence/aptitude as far as I know. So I'm afraid I can't help.

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