Feb. 1st, 2012

amorpha: (Default)
Seeing autistic people make the argument that autism is worse than cancer because people can be cured of cancer, in trying to explain why it's legitimately a disability.

*thud*

I don't remember where we first read it. But we've seen it brought up in several different places. That disabled people who can be "almost normal" can be more unhappy than those who couldn't, or never had a chance of looking like it in the first place. Partly because a lot of people, as long as they keep thinking they can look "almost normal" if they just try hard enough, will keep trying to grab what they think is the prize being dangled in front of them, the passing-for-normal, no matter how much it takes out of them and how little they actually enjoy it. Partly because the realization that you'll never be "normal" no matter how hard you try can make you look deep down into yourself and re-evaluate what you had defined happiness to be, or what you let other people define it as for you. And some other things I can't describe in words right now.

(And because I'm feeling a little filter-beaten tonight, some disclaimers: This doesn't happen instantaneously, for anyone. Support from other disabled people who can't be Almost Normal either can be one of the most important things in getting to that point. I'm not saying that if someone can't look normal and is suicidally depressed or something, they just need to suck it up or it's their fault or whatever. A lot of us were beating our heads needlessly against that wall for years, decades even, because everyone and everything around us was giving us the message that there was no future for us if we couldn't become Almost Normal.

It took coming into contact with various people offering us different views of the world, radically different ones that said we could be happy even if we couldn't be Almost Normal-- not just about disability-- over several years for us to get to the point that we're at now. And no, I am not saying every single thing labeled as a disability is just a different way of being with no downsides. We'd be rid of several of our chronic health problems if we could. It's just better to assume common sense and assume a person does NOT mean the most ridiculous, extreme extrapolation of a concept you can imagine.)

But anyway, we have seen a few discussions going around lately about how non-autistic professionals tend to say autism is about impaired socialization, "theory of mind," stereotyped repetitive behaviors, etc. While autistic people say that it's about profound differences in cognition, perception, and communication. (And often the autistic people disagreeing with the professionals about this, are the ones who've been labeled as severely affected or low-functioning or thought by other people at some point in their life to be incapable of understanding what was going on around them. And no, these things are not mutually exclusive with having been labeled high-functioning, mildly affected, etc at some other point in a person's life.)

And... one other thing we've noticed is this:

Autistic people who believe that autism is primarily a deficiency in social skills, "theory of mind," etc, often tend to be more unhappy than autistic people who believe (as we do) that the most important aspects of it are profound differences in perception, cognition, and communication. To actually have a lower "quality of life," when it comes to what they want versus what they have.

And this probably has a lot to do with the fact that they have been taught to believe that their entire life is going to consist of trying to strive after Almost Normal even though they will never quite get all the way there.

That their life is going to be defined by what it lacks, rather than what it has. That their personal relationships, with friends, relatives, and partners, are always going to be defined by inability to really understand and relate with other people, in a way that everyone else can do effortlessly. That they'll constantly be having to strive after pale imitations of "real" relationships in which they must constantly pour forth immense effort into "interpreting other people's emotions and facial expressions," and that this will be the best they can ever do as far as having meaningful connections to other human beings.

That whenever things go wrong, whenever they accidentally upset someone, whenever they mess up, it will be blamed on their autism, their deficiency. And they have probably experienced this plenty of times, experienced being scapegoated as the one who causes all the problems by being "different" even before they were diagnosed, in many cases.

Looking back, I realize that for everything our family did wrong, they did give us one thing that was very important, even if it wasn't something they deliberately set out to do. Namely, there has never been a time in our life, from the moment we were born, when we were not in contact with other neuro-atypical people (even if they weren't necessarily autistic).

Growing up with several neuro-atypical people in our immediate and extended family, we experienced the profound connections and the deep beneath-words communication and, yes, even the body language that can exist between us. The everyday acts of kindness done by our relatives. The fact that they had the capacity to do as much good, and as much wrong, as anyone else. (And that when they did wrong, they did it for the same reason "normal" people did it-- not because they "couldn't imagine other people's mental states." We learned that there are neuro-atypical people who are perfectly aware that they're hurting another person but just don't have a problem with that fact. We can be as good or as evil as anyone. Our evil is not a special type of evil, contrary to what Famous Researchers would like to believe.)

We did often feel that the overwhelming majority of other people, in the dominant culture around us, were just completely alien to us and that we would never understand them. There were many years when we despaired of ever having friends at all, and considered suicide because of it. But then we also had our connections with the other neuro-atypical people in our family, the ones that went so deep that we could often tell things that hadn't been communicated in words.

So with that foundation established, it was difficult for ideas like "autism is primarily a disorder of empathy" to get too deeply into our head and break us apart. By the time we heard that line, we had already connected with several other neuroatypical people through the Internet and formed friendships with them, when we didn't know we weren't supposed to be able to do it.

And we see people talk about how wonderful it is that children are being diagnosed at younger and younger ages. And we see people who have grown up, or are growing up, in the shadow of "intervention"-- of being told that the goal of their entire life is almost becoming a person, even though they will never be able to make it all the way.

And thinking about that, we can see how a person could believe that being autistic is worse than having cancer, if that's what they're being raised to think. Because there is no cure for "almost being a person but not quite"-- except to realize that there is actually no such thing as a non-person person in the first place, a person who is not really a person.

Which is the crucial piece of information being denied to them.

Along with the knowledge of the deep bonds and friendships that can form between autistic people, where it's okay if there aren't always words because words aren't always needed.

And seeing how that affects people, especially people who are in a phase of their lives (adolescence) when most people crave some sort of acceptance and validation by people around them, is saddening. Heartbreaking, even. And if someone believes the entire goal of their life is to try to be as much like other people as possible even though it's an impossible goal for them, to strive after something they can't attain, to be forever separated in some way from the rest of humanity, it's more surprising if they don't respond by becoming depressed, despairing, and thinking at some point or another they'd be better off dead.

We've seen people throw off the shackles of these ideas, and suddenly start being a lot less miserable, even when there are still various non-autism-related factors in their lives making things difficult. We've seen people who could not by any means be called "unimpaired" or "only mildly impaired," start feeling better when they realized they were autistic, or atypical in some other way, when conceptualizing it as a different way of perceiving and interacting with the world rather than as a series of deficiencies. It can be an incredibly powerful force for change.

But even if you know this because you've lived it, and seen other people live it, it's hard to talk about it when people constantly try to shut you up about it-- to insist that the only reason anyone would ever see autism that way rather than as a series of deficiencies is that they're "too high-functioning." Even if, again, a lot of the people saying this most vocally are autistic people who need a lot of help to survive in their everyday lives. And a lot of the people who are talking about how miserable it is to be autistic are the ones who have been deemed "high-functioning" and told they have a disorder of empathy.

...and I don't really have a conclusion because language is kind of disintegrating all around us now, has been for the last two paragraphs. So I'll just end it here.


-S/Tamsin/Julian and maybe various other blendyish contributors

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