Part I: Why I’m writing things this way
I’m having trouble getting the words out any other way. Zilari, of Processing in Parts, has convinced me it’s possible because of xyr reply in the On Being Different post in 29 Marbles. But so much of the lines are scrambled that it’s going to be interesting getting the concepts in and out. Language is not doing what I want it to do right now. I am going to try to write this in pieces.
I am using myself as an example in many of these merely because I am near at hand and it is more difficult for me to observe things that are not near at hand right now. I should probably clarify that I am again not asking for “emotional support” or strange sympathy-esque emotions that make no sense, I’m trying to illustrate points.
Part II: On universality of attitudes
I once said I knew an autistic guy, been to many countries, he said it showed him how many different ways there were to do things.
I haven’t been to very many countries. But even in different parts of the United States I have seen many different ways of doing things.
I have been places where nobody bats an eyelash at my appearance and I have been places where people call the police at the mere sight of me.
I have been places where the way I act is seen as normal and the I have been places where the way I act is seen as way the heck not normal.
In the society that lots of people pretend is the only one, there is no way I am seen as normal, there is no way I do not face a lot of prejudice just based on my appearance, etc. In the society that lots of people pretend is the only one, the only thing kind of normal about me is the fact that I can use language, the rest of me looks very odd.
But I’ve been other places and I know better than to think this is all there is.
I know it is a false idea that people like me are always shunned to the degree we are where I live now. Your own society is never the whole of human nature.
Part III: On whether autistic people are “deliberately” this way
Personally I do not pass for non-autistic. I just don’t. There is nothing about me that screams normalcy unless you get me in an environment where stereotypically autistic-looking people are accepted to a larger degree (these environments do exist).
But it is true, a lot of autistic people can pass. But passing requires a lot of energy. For some autistic people, passing means not eating. It means being in constant unrelenting physical pain. It means in the end not functioning and not surviving. Our brains are built to function in an autistic way, not a non-autistic way. This is what we do.
We cannot just swap out autistic and “normal” behavior and have the “normal” be better for us than autistic. The autistic part has a reason.
As I type this, I am rocking, violently twisting, grimacing, finger-flicking (yes, while typing), and squealing. Does this look strange? Yes. Could I type this without doing that? No. I would be curled up in pain and banging my head on something while screaming. Is that better? No. (I am not sure I will not end up that way in a few minutes frankly.)
Yes, some people have more ability to pass than I do. But should someone be penalized for choosing to rock at a point when I cannot choose not to? I don’t understand why. I don’t understand why I guess we are being split up into deliberate and not-deliberate.
Part IV: On making an effort
Let me tell you something about effort.
If I let go right now on the iron grip I have on effort, I would instantaneously lose all ability to use the language I am typing and reading. I would perceive my surroundings as an array of patterns of color and texture and pitch and motion. Language would be switched entirely off. The whole concept of things existing that are not in my immediate environment and time would not exist anymore, nor would time. Movement might be iffy. It’s frankly tempting right now because the effort is pretty bad, and once I’m done with this it’s quite likely that I will lose momentum and slide into it involuntarily, if I don’t voluntarily give these things up first.
I obviously view communication as a high priority at the moment to divert all that energy into it.
Diverting this energy into communication means that I cannot control my body posture. I cannot control the noises my mouth is making. I cannot control how weird or normal I look. I am having trouble controlling the words I use to the degree of precision I would prefer and a lot more is getting lost in translation than I would like. I have just run and lurched and spun and crashed on the floor and rolled around and got up again in the middle of writing this. I am not kidding and this was not voluntary, this is a system trying to compensate for the fact that I am putting so much effort into one thing that I am stretching a lot of limits.
This is all for writing something, alone, in my apartment, with only a dog and a cat for company and no stressful input except possibly from my computer screen.
It takes this much effort to do this. It takes even more effort to do more non-autistic-friendly things, such as exist in a world that is not designed for us in the slightest. When I am interacting with people, I am putting immense effort into understanding and responding to them. I may be putting more effort into it than most non-disabled people have to put in except in crisis situations.
And I’m quite often, despite all this, seen as putting no effort in at all and in fact being rather lazy. Because no matter how hard I work I am never even close to the accepted standard of normal. It is just plain inconsiderate of me to have a body that moves and responds and perceives the world the way mine does.
Part V: On deliberateness being wronger than not being able to help it
In most cases, especially when the behavior is simply considered unsightly, I don’t get it.
Is a woman who is bald because she’s just more comfortable that way more wrong (especially when people yell “dyke!” at her) than a woman who is bald because she has had chemotherapy? People often stare at bald women (well, in some places they don’t, but in some places they don’t stare at autistic people either) and avoid them and think they’re strange. Is the woman who’s comfortable that way just bringing it on herself?
If an autistic person really could suppress rocking but doesn’t want to, is that worse somehow than an autistic person who cannot suppress it? Is the first person just bringing it on themselves when people call them a retard, bar them from certain facilities for “disturbing the customers”, etc?
Is an autistic person who is okay with who they are, automatically “choosing to be autistic” and therefore responsible for what other people do to them? Would it be better if I acted very pitiful and did the whole “I sure wish I could help it but I can’t” routine and prayed for a cure openly and publicly?
Part VI: Fitting in socially vs. fitting into society
Society would not be what it is if everyone in it were the same. The typewriter in my room would not work if it were made entirely of screws and nothing else.
A lot of people want to mold autistic people — and other neurologically atypical people — into shapes we are not. By shapes we are not I mean to try to recreate us in a non-autistic image because that image is more pleasing to non-autistic people. The same has been done to many other people, for instance paraplegics have been forced to walk badly using braces and crutches rather than use an “unsightly” wheelchair, blind people have been prevented from using Braille and cane travel because they were seen as “stigmatizing” by sighted people, and deaf people have had their hands tied behind their back because their “animalistic” way of communicating with each other was seen as evil and wrong and bad.
Disabled people of all kinds do operate differently.
Disabled people of all kinds do need to operate differently.
And disabled people of all kinds have a place in society.
Having a place in society is not the same thing as “fitting in” on a superficial social level and having everyone like you. Sometimes your place in society is to be the person that people don’t necessarily like but you’re serving a function whether they like it or not. Society needs a certain amount of autistic people and people with all kinds of different brain and body configurations, whether we’re liked or not, whether we’re accepted or not, we’re necessary. And not just again on a superficial level of someone else’s gauge of what is productive contributions to make.
Part VII: On accepting the consequences
The consequences for me are not trivial. But they do not strike me as just “the consequences of being me,” I have seen enough places to know better. I know that these consequences are interactions between cultures and people and places and kinds of people and so forth, they are not just the “consequences of having this trait,” whether the trait is the inability to do something or the ability to do something or the way something is done or the way a person looks or anything else.
But I have a problem with the idea that I should accept the sort of “consquences” dealt with in Project Cleigh as if they are inevitable and right and so forth. I also have a problem with the idea that I should accept the various “consequences” that make it literally physically unsafe for me to go outside alone because of how many people react to my appearance.
I could and have for instance just by looking the way I do get sent to the emergency room and given drugs that I have life-threatening allergies to. I refuse to accept the idea that it’s okay or a natural consequence of looking like me that going outside alone is life-threatening, it simply does not make sense. Whether or not I have chosen to look this way. And choosing is not bad, but not having a problem with the way I look is not the same as being able to choose how I look.
The way I look doesn’t just get people looking at me funny, it gets people trying to figure out what group home I got out of and surrounding me and detaining me and doing other unpleasant things to me. It means that I have to have someone with me who looks “competent” just so that I will be seen as being “supervised” even if I don’t need “supervision”. It is dangerous for women to walk outside alone in some places (not where I live, but where I used to live) but that is not accepted the way the danger to me is accepted.
And it does not seem either inevitable or acceptable for things to be this way. Not inevitable because I have seen it other ways, not acceptable because people shouldn’t have to put up with this kind of thing, autistic or otherwise. I accept that it happens but I do not accept that it should happen and there’s a big difference there.
Part VIII: Trying to tie this together in words
Which I’m not going to do too well right now. I hope the parts I am getting through are making sense.
I have just realized that echolalia of a sort will do the trick. Here is a quote from a friend’s unpublished autobiography:
[in describing being good at saying and doing things other people wouldn’t dare to say or do]
This is of course an ability that carries with it a high degree of risk. From a perspective that sees persons as atomic — discrete units of mass and energy floating in a vacuum — my ability to take these risks is “pathological.”
But humans are not the classicist’s atoms floating in a vacuum: they are components of a society, an ecosystem, and a universe. There’s an essential social role for precisely this kind of risk-taker. This is the part of the puzzle where I fit.
If I were to try to “learn” to avoid these risks, what I’d really be “learning” is how not to fit into my natural role in society, how to be a true misfit, rather than an apparent one. I can’t benefit from “skills” that would turn me away from taking these risks, but I have benefited from everything I’ve ever learned that has made me better able to recognize and manage these risks.
This is where I think most attempts to “help” autistic spectrum persons fail. They start from the assumption that the person does not fit in, and then seek to twist the person into some imitation of normalcy — usually at the expense of the autistic spectrum person’s sense of self and self-esteem — rather than starting from the position that the person has a role, already does fit in as a critical edge piece of the human puzzle, and seeking to help them develop the tools they need to fill that role effectively. We don’t need the skills it takes to be “normal”; we need the skills it takes to be different.
I’d buy the idea that NTs have a real (and not merely a majority-rules) grasp of things social if I didn’t find myself reminding them that they live in a society as often as I do…
And I am very glad she wrote it, because it’s everything I’ve wanted to say in this post, only shorter and better languaged. We already have roles. We just need to learn how to best deal with the roles we have. And other people should not be treating us badly, and when they do it is neither inevitable nor because we should have been efforting more and fitting in in the “true misfit” way and everything else.
Now if you’ll excuse me I think I’m going to go do something very loud and conspicuous and socially inappropriate. That’s what trying to force a non-language brain into language mode will do sooner or later.