chaoticidealism ([info]chaoticidealism) wrote,
@ 2008-06-04 14:08:00
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Entry tags:asperger syndrome, disability

Disabled or not?
When Asperger's as a disability is discussed, people seem to be thinking along the lines of, "Disability must be severe to be called disability." That's true only in the legal sense, when it has to prevent you from working.

Many Aspies feel they aren't disabled. Sometimes it's true; sometimes it's just a way of saying they don't mind having Asperger's, that it doesn't stop them from doing what they want in life. But there's a difference between that and not being disabled.

Disability is in large parts a social construct; it compares someone to the requirements that society places on him, and asks whether he needs anything more than most people to fit into that society--whether it's extra energy, extra education, technology, or outside help. Move someone to a different society, and he may no longer be disabled.

Realistically, though, there are an awful lot of conditions that are disabilities and yet don't hamper you too much once you have adjusted. For example: Let's say you're self-sufficient but you use a wheelchair. You have access to ramps and elevators. Nothing's really closed to you--even mountain-climbing has become accessible. So are you still disabled? Most everybody would say yes, you are, because you can't walk... Okay, so let's take a Deaf guy with a talent for lipreading. He learns to speak with what sounds like a bit of an accent. All he has to do is look at someone to understand them. Is he still disabled? Most people would say yes, he is, because he still can't hear...

But how is that different from an Aspie who has learned to cope in social situations? You still have the basic difference that cause you to put forth a lot more effort when you're in a social situation--like the deaf guy who's using a lot more brain power to lip-read than he would watching people sign.

Disability can be mild. It can be almost or completely compensated for. And in those cases, the only reason it's still called a disability is because you do have to use extra effort, or extra technology, or accommodations of some sort, to compensate. Disability isn't always something you can NEVER do.. it's often something you do differently. Like an Aspie's socialization.

Some Aspies aren't disabled, but I would not call it that until they got to the point that they take no more effort than an NT when they socialized, got no more stressed than an NT from sensory input, and could, if desired, spend no more time on special interests than an NT spends on hobbies... Only the milder cases get to that point, and usually not until middle adulthood. Whether that's necessarily better than staying "disabled"... I doubt it, really. It's life, either way; doesn't have much to do with happiness.

And to complicate matters, some things aren't thought of as disabilities when they really ought to be; for example, ADHD can cause more problems than Asperger's, but it is not commonly categorized as a disability until it reaches an extreme level. Without the technology afforded by eyeglasses, someone with 20/200 vision can't drive and can't navigate well--but because so many people wear eyeglasses, it isn't considered a disability. Chronic illness is on the borderline, too; diabetes requires extra effort and extra technology, but it too isn't quite considered a disability.

A whole society is determining what "disabled" means. Depending on how unusual a condition is, it might be put on either side of the line without real thought. Some things that cause less trouble than Asperger's are considered disabilities just because they aren't the norm--for example, having a prosthetic leg. (Granted, that causes more trouble than Asperger's at the beginning; but let's say you were born without the leg and grew up using a prosthesis)...

Let's face it: Society determines what "disability" is. And our society thinks socializing is awfully important--possibly the most important skill, if you don't count basic self-care, or even if you do count it. Many Aspies are considered disabled; and because disability is determined by society, that means that at the base of it they ARE disabled, just because of the mismatch between what society demands and what they can give; because they have to fill in the gap with extra effort, extra education, extra technology...

The Aspies in question--disabled because society says they are--usually do not think this is a tragedy or an impediment to doing what they want with their lives. But that is true of so many people who are disabled by any measure of the term--everything from Down syndrome to quadriplegia to blindness. People exist with those conditions and just about any other who consider themselves to be quite functional, not deprived or "worse off" than anybody else, not impaired in doing what they want to do.

Just because you do not think that having a certain condition is a problem, doesn't mean it isn't a disability--because what you think isn't in the definition, really. That's why the disability community is so important; our status is defined by those around us just as a racial minority's status; and what those around us think of us affects us quite a bit more, psychologically and socially, than the actual impairments we deal with.




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[info]catana1
2008-06-04 10:21 pm UTC (link)
I can't agree that society is the sole arbiter of disability (and I'm not even sure you meant it that way). I've had severe ADD all my life, but didn't have a word for it until just a few years ago. I can see how it impacted my life when I was young, particularly in terms of what was expected of me by my parents and teachers. Today, it still impedes me in fairly serious ways, but it's an entirely private thing. When it comes right down to it, it's much more of an disability than any of my aspie traits, which are pretty mild.

I also have a problem with the usual perspective on disability--which centers around pragmatic things like accessibility, holding down a job, etc. Quality of life seldom seems to be taken into account, all the things that make our lives richer, that some disability might cut off entirely. No matter how many aids my husband might have had if he had lived long enough, he never would have truly understood what plaid is from my description, or art, or the way a sunset or a garden full of flowers looks. Compensatory technologies, as useful and necessary as they are, can't make up for some serious losses. The deaf person, no matter how skilled at lip reading, will never be able to experience and enjoy music. The examples are endless. A life with serious disabilities is a narrower life than most of us are able to enjoy. We need to think about enrichment as well as usefulness.

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(Anonymous)
2008-06-05 09:11 am UTC (link)
In response to very similar sentiments, I wrote this (http://ballastexistenz.autistics.org/?p=204) a long time ago.

I mean... seriously. A non-disabled person will never see the vast majority of light frequencies nor hear the vast majority of sound frequencies. They will never breathe underwater without special equipment, nor will they fly without special equipment. They also require special equipment to see things that are either smaller or more distant than a certain amount. Much of the equipment designed for seeing really far will have to translate the raw data into something that the person's limited senses can figure out, because they won't be able to directly see the vast majority of what they're looking for. Only a small number will travel to outer space, and an even smaller number will walk on other moons or (possibly) planets. It's unlikely that anyone will get much beyond our solar system if even that.

All of which is to say, we're teeny-tiny parts of a huge world. The difference between the limitations of experience produced by living in the body of a disabled human being versus a non-disabled human being, is infinitessimal. And it's not always even a matter of non-disabled people being less limited by their bodies than disabled people in the first place. (And even when it seems to be, it's rarely that straightforward.)

Basically, what I don't get is how with a world this big, full of things that nobody will ever do, why it's supposedly impossible for people to enjoy life if there's something we can't do. (And I'm saying this as someone who by normal standards would be considered severely limited by a combination of things.)

I also don't think it's so easy to divorce the expectations a person is raised around, from how they experience the world and their own limitations as a disabled person. I mean, I only have to look at the fact that people seem to expect and even encourage in some disabled people, what would be considered unacceptable levels of self-pity in non-disabled people, to see that how we feel about ourselves is shaped by a lot of subtle reactions to us that aren't always noticeable. It's not like every aspect of an environment that does this sort of thing to people jumps out and screams "Here I am," it's usually the sort of thing that you really have to look for, and then once you notice it you wonder how you didn't see it before.

And the difference between what limitations we accept and what limitations we see as totally unacceptable is influenced heavily by our surroundings whether it's obvious or not at any given time. These experiences aren't separate from our surroundings, they're very much a part of them.

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[info]catana1
2008-06-05 01:34 pm UTC (link)
Is it useful to make a comparison with things that nobody can experience because the human senses aren't built that way? We compare ourselves with each other, or with being able to experience what we know is out there, even if only from someone's else's description. And let's not forget that people can *become* disabled and lose the ability to experience something that they once enjoyed, loved, or even depended on. If that was something they shared with others, it's an even greater loss. And all it does is feed into the stereotype of autistics as non-social beings if we deny that sharing can be a pleasure or that pleasure is important. If we limit ourselves strictly to autism, it's clear that some autistics do wish they had some of the abilities they lack, and some don't. That's a personal thing, no matter what society has to say about it.

Self-pity is a personal decision, though it can be strongly influenced by society. And it's all the more likely if compensatory technologies are purely pragmatic and ignore the things that provide pleasure. That's why I ended with a statement about enrichment. Whether through technology or other means, whether individuals are mildly or severely disabled, as human beings they deserve a life that is as rich in aesthetic and sensual enjoyment as possible.

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