I'm not sure I qualify as "mildly" autistic. (I don't identify as either "mildly" or "severely" personally, but people who actually know me don't tend to say "mild" anything about me.) But I don't want a cure. As far as I've seen, pro-cure and anti-cure sentiment don't have to do with real or perceived "mildness" -- they happen across the board among autistic people.
It does interest me how much some people want to find an explanation other than the one that exists. It's like, they see a rock in front of them, and they want to psychoanalyze it and say "That's not a rock, it's a tree that thinks it's a rock." Because they don't expect a real rock to be sitting there and the idea of a rock sitting there is incomprehensible, so there has to be some kind of psychoanalytic tangle to explain why the rock is sitting there.
But, in my case, I really do think being autistic is an important part of who I am. Autistic is just the word they use for certain aspects of the way my brain works, and I happen to think those aspects are pretty fundamental, more fundamental than personality even. I don't hate them. Even when I do experience bouts of self-hatred, they seem external in origin -- if I had not been taught these aspects of me were bad, I would not ever feel like they were.
I also think that it's a misnomer to call the way autistic people talk about CAN "abusive". Disliking an organization is not the same as abusing someone.
But at any rate, to me it's the hatred of autism that seems foreign, external, from outside, from all sorts of little insidious expectations of what a person should experience and be like. Insidious and narrow expectations. The idea that I am okay as I am is more the default, more how I would be in a more neutral society, and as far as I can tell the saner option. And it is real. It's not some mirage I cooked up to hide a deep hatred of autism or something. That deep hatred of being autistic is simply not there.
I wrote this awhile back about the strange things people come up with for why some disabled people don't want a cure:
People do not generally understand the real reasons that many people are not all that interested in cures. Those reasons can include: Rejecting entirely a medical model of disability (or of some categories of disability), having different priorities in life than endlessly searching for a cure, the absence of safe and effective cures available, the fact that yanking on one thing may inadvertently yank on several others, believing that we have had valuable experiences that we might not have otherwise had, and believing that what other people call “our disabilities” are actually an important part of us. Those are the real reasons that I hear over and over again.
But there are other reasons that I hear over and over again, usually invented by others because they refuse to believe our real reasons could ever be the case.
Even some disability rights activists get into it. Billy Golfus, in “Some Thoughts For the New Kids” (Mouth Magazine, May 2001) says “Now some gimps will tell you they wouldn’t trade their disability for all the wonnaful-wonnaful things they’ve learned. Rhetoric. That’s just rhetoric. If you started a line for who wants to be brain damaged and have memory trouble, lack of mobility, and surprises with their elimination functions, you’d find the line pretty goddam short.”
It’s not just rhetoric though. And it’s not all just about “the things we’ve learned”, either. Many of us genuinely don’t want people to rearrange important aspects of who we are and how our bodies function, just because they think their way is the better way. He’s got it right in the same article when he says that the real problem disabled people face is “MacSameness,” the idea that all people have to be the same. He’s just a little off when it comes to why many of us don’t want to be “the same” in all respects.
Last night (as of writing this part), I got into a conversation with someone who compared me to an inhabitant of Flatland who had never seen the three-dimensional world and had no interest in it. Flatland is a book by Edwin Abbott Abbott, where two-dimensional creatures are baffled and frightened by the existence of three-dimensional creatures. This is
view-from-above thinking, right down to the spatial metaphors. The idea is that I live a constricted life and cannot see the beauty of the other way of living, therefore I don’t want it, but only because I’ve never seen it, and if I’d ever experienced being non-autistic I would jump at the chance to stay that way.
That view starts from the assumption that being non-disabled is automatically superior and that those who don’t believe this to be the case, are fooling ourselves somehow, or limited by our experiences.
Then there is fear.
Some people believe that those of us who don’t want to be cured are afraid of responsibility, afraid of having to get a job, afraid of not being taken care of, and so on. They imagine that we’re just too scared to get better, that we prefer to remain in the ‘
sick role‘, in ‘dependency’. (Never mind if we’ve fought the standard notions about what the ’sick role’ and ‘dependency’ actually are, this is irrelevant, disability is, according to people who take this viewpoint, wholly individual after all.)
There’s a wonderful passage in Laura Minges’s article
Disability Shame Speaks, that deals with this in the context of physical therapy:
Quote:
Sure, every once in awhile they get a rebellious patient. Physical therapy is hard work, and some people are just used to having things done for them. It’s easier. Certainly, when such patients cry, they are simply feeling afraid of gaining more mobility. That’s all there is to it. I mean, after all, not everyone cries. It certainly isn’t about exhaustion, lack of privacy, feelings of powerlessness and abuse. Yes, the therapists find it interesting that adults who have been disabled from birth don’t come in much. But it’s just as well. They are the ones who always cry. Many complain of traumatic flashbacks of abuse when stretched, but everyone knows that a therapist’s job is to deal with the body, not the mind and heart. Better to concentrate on the ones who really want to get better.
The newly injured. Oh, what a dream they are. Motivated. Bright. Determined to beat the odds. Working with them is never a waste of time. They always comply, and they beam with pride. Witnessing their determination is a powerful experience. The newly injured look at the tears of the “disabled from birth” crowd and reinforce the idea that it is just fear, tell them you don’t want to move. Tell them it’s all going to be fine, that it’s an excellent thing for you. That disability is bad, wholeness good. That if you do not believe that, you have some serious soul-searching to do as to the reasons you prefer dependency.
After hearing this, those who have been disabled all their lives bolt from the treatment rooms in tears, and nobody questions why. Sometimes therapists even think it serves them right. Wasting all that time with tears and trauma when the choices are so clear. Become independent or don’t.
Then there’s the ones who just think I’m unambitious, in a bad sort of way. Clearly because I do not make it my life’s ultimate dream to be made Whole and Normal™, and because I do not expend much if any energy into that direction, I must not really care about anything important in life. The fact that the things I want to do in life don’t depend on being cured (and that some might depend on not being cured, depending on what’s being “cured” that day), apparently means I don’t really want to reach my potential. Because we all know our potential isn’t in finding the sort of person we need to be and then being that person (whether that person is “normal” or not by any arbitrary standard), but rather in how close to normal we can make ourselves. Or something.
Or, of course, we’re lazy. We don’t want to work hard. My only answer to people who believe that of me, remains, “If you spent one day in my body you wouldn’t be able to move. At all. Or understand what was going on around you. No matter what you did. So what was that you were saying about not making an effort?”
There’s also some really interesting psychoanalysis that goes on, that ends up revealing more about the person’s views of disability than anything else. A number of people have flat-out equated disability with being pitied (and with self-pity, for that matter) and have assumed that anyone who wants to remain disabled, must want to be pitied (or to pity themselves — or of course both). Apparently they can’t disentangle disability from pity enough to understand why disability activists might so commonly wear a shirt saying “PISS ON PITY”.
I got into a very frustrating conversation with someone who combined the above three (which I’ve also seen each on their own) recently, who appeared to have absolutely no acquaintance with the concept that a person they considered intelligent might be unable to move their body on demand. When I attempted to describe the reason in detail, the person told me that they, at least, weren’t going to pity me. I found this very strange, but it took awhile to convince the person that I do not, actually, want to be pitied, even if I do occasionally want people to have some grasp of how my body works.
That reminded me of Eli Clare’s
Exile and Pride, where the author wrote a description of the interaction of zir body with cerebral palsy and the environment, and ended each paragraph with, “I am not asking you for pity. I am telling you about impairment. […] I am not asking you for pity. I am telling you about disability.” It seems that around some people, we can’t even describe how our bodies work without there being an assumption that we are looking for pity (or pitying ourselves) — and therefore without having to disclaim everything we write, the way Eli Clare did.
But, yes, some people assume that if we don’t want a cure, we are wallowing in self-pity and expecting everyone else to pity us as well. Short answer: No.
Then there is the response my psychiatrist gave in the letter I quoted before. That one is a classic. I’m just “giving up” if I refuse to go with what the medical profession wants of me. No.
This is one of those things where I never even know how to have a conversation with someone who thinks that way. Someone who believes my entire life revolves around concepts that I don’t even believe in, and that they somehow have the special knowledge of everything I really believe about myself, and all my real motivations. How psychiatry-like of them, really.
Telling people our real reasons never seems to get much of anywhere, people go on believing whatever they believed to begin with.
Of course, one person's response to that entire post was to express sadness that my "identity was derived from my disability". Which is not the case at all. What it is, is that I happen to see myself as a whole person, and part of the person I am happens to seamlessly include things like being autistic, in an inseparable way. That's very different from taking the concept of "disability" (and the various prejudices that person no doubt harbors about what disability means) and spreading it out to cover the entire identity or something.
But some people will never get it, and will continue to psychoanalyze us, assuming that we are somehow twisted up inside in order to come to what to us are pretty natural conclusions. (Just as some people will continue to refer to all people who don't want a cure as "mild".)
12 Mar 2007, 10:26 pm
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in all honesty the reason I don't want to be cured is that I Iam Used to doing things in my own way and I don't want to have to get used to a different way. I admit, though, the idea of rewiring or changing a persons brain seems a bit creepy to me 
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