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Breast cancer is a disease, but being female isn't. That is all.

Lucie1 Wrote:

dove nested towers Wrote:

To autistic self-advocates everywhere: Welcome to the disability community!

Yes, that’s right, you’re DISABLED. Yep, you can pick that word apart and tell me why you aren’t, but, trust me, you are.



I know you say you don't want to hurt anyone - but if so , why choose words the way you do and then post them on a forum such as this? If people choose not to see their asperger diagnosis - or if they have adapted their lives to cope - why (in specifics) would you say they are disabled.


She didn't choose those words, I don't think.  Joel Smith chose them, they are on his blog, which she posted a link to at the bottom.

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And why should anyone trust you - to determine whether or not they are disabled.  Your words come across as being condemning and judgemental. Aspergers can be disabling - but it can also have advantages.


The original post (on the blog it was originally posted on) is not about whether autism is "a disability" or not, it's about whether autistic people are disabled.  They are two very separate questions.  

In fact, I find arguments for and against autism being "a disability" identical because they both locate disability entirely within the person, and the way Joel thinks about it, and I do, and most of the disability rights movement, disability is a situation where you have a body (including brain) which is not planned for a society that does have norms that say another kind of body is the only one that should be planned for.

And I find most arguments against autistic people being disabled to, aside from being from an individual and/or medical model of disability, absolutely reek of the same disability stereotypes that every other disabled person is trying to get away from.  It's like if certain immigrants to America started saying "We're not immigrants because we're not stupid."  Even if the people saying it weren't stupid, that statement would be very derogatory towards other immigrants, and also incorrect.  

To a person who knows what the disability movement has done, then statements saying "I'm not disabled because I'm not _______" sound equally harmful.  And so does saying "Autistic people's issues aren't the same as disability rights issues because autistic people's issues are _______."  (And every blank I have ever seen that filled in with is one that other parts of the disability rights movement have not only covered, but covered more thoroughly than, as Joel says, the reinventing of the wheel autistic people are doing, suggests.)

That's why Joel is saying, read up on these things, find out about what the disability rights movement has actually done, before making these judgements of what disability is and what disabled people are.

My issue with comparing autism rights to disability rights is this:
There are people on the spectrum who quite honestly are not disabled in any way. There are also people on the spectrum with disabilities that do not directly relate to autism in such a way that it effects their rights. Someone who is incapable of coping with being in a loud room but is never in one and experiences problems due to prejudice in other ways does not have a disability rights issue - they have an autism rights issue. I know quite a few people who are autistic and not disabled - a very large number in fact. I also know several who are autistic and disabled, but the disability rarely is related to simply being autistic.

"Disability rights" and "autism rights" are both in my view part of civil rights, but they cannot be arbitarily exchanged for each other.

Zoran Wrote:

anbuend Wrote:
That's why Joel is saying, read up on these things, find out about what the disability rights movement has actually done, before making these judgements of what disability is and what disabled people are.


If the description given in the material quoted in the original post is correct, then what the disability rights movement has done is redefine "disability" to include everything, and I mean everything -- sex, race, sexuality, class, level of wealth, even geographical location -- as a "disability". Under that definition, am I disabled? Yeah, I'm disabled, but I don't think it's a good definition.


In the absolute most extreme form of the social model, that may be correct (and I have known people who are not disabled in any typical way, but are in that extreme way, who used the word disabled this way and meant it, as in a black woman who worked in a psych ward I was in, said to me once that she was disabled because she was black, and she meant it the same way social-modellers mean it in the most extreme sense of the word, she did not mean it in even the slightest self-disparaging way).

But really, using a bit more common sense here, most of them mean groups of people who've been disabled by society in a form that's been approached in a particular way -- largely a medical way in modern times, and a way that has to do with the way their body works not being planned for, more than anything else.  (Body here includes neurotype.)  

This can change over time and by culture.  For instance, yes, gay people were not that long ago, disabled in this sense just about everywhere, but in many places (not  everywhere) are not anymore.  I am gay, and I have no problem at all with this characterization because of my understanding of what the social model means, including that it accounts for shifts over time.  Being disabled doesn't mean something's wrong with you, it means your society says something's wrong with you and they cast it in a medical light or a similar light.  Some of my friends were locked up in psychiatric wards for being gay back when that was common.  At that time, gay people were disabled.  Now they are mostly not.  Being a member of one of the groups targeted by the psychiatric establishment makes you a disabled person under this model, regardless of whether you've personally been targeted or not (because it's possible that you could be).  Currently, autistic people occupy this role.

I don't agree fully with a strictly social model of disability, but at the same time I think it's a lot better than the current model that says essentially that disability means something's wrong with you, probably medically so, sometimes morally as well.

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The autism spectrum does extend across the "disability" line. That doesn't mean, though, that those who aren't disabled have nothing in common with those who are. The social prejudice is a major problem--possibly worse than any other problem autism can bring--and both the disabled and non-disabled autistics face it. That means that even if autism doesn't cause disability for you, you have a lot in common with those for whom it does cause disability--and thus have a good reason to join the disability community nonetheless. It's a lot like a Deaf person who is a very good lip-reader--he can function in society without using sign, and the only accommodation he needs is that people should face him when they speak. But he's still part of the disability community... same goes for a socially proficient Aspie.


Additionally, being a member of a group of people who's targeted by the medical profession as defective, even if you personally are not diagnosed or considered defective, means you're disabled because you could potentially be targeted in this way.  Just as being a woman who can pass for a man still means being potentially a target of sexism, being a black person who can pass for white still means being potentially a target of racism, and being a gay person who is in the closet or in a gay-friendly community still means being potentially a target of homophobia.  

Disabled in this sense basically means being a member of a group that is potentially a target of ableism.  And discrimination against autistic people, including the things telling us that an autistic body is inherently wrong for no other reason than that it's been medicalized, are forms of ableism, and take place in the exact same sets of moral and medical contexts that all other sorts of ableism do.  

There is nothing unique or special among autistic people that is not part of other disabled people's fights as well.  And I mean nothing, a hugely surprising amount of nothing.  I am working on a post, or maybe a page, for my own blog, that details every way that autistic people frequently say we're different from other disabled people, with quotes from non-autistic disabled people showing exactly how similar, er, really identical rather, we are to other disabled people in our opinions of ourselves and the stereotypes and discrimination we are fighting.

Many autistic people simply don't know the work that's been done in the disability community because they haven't seen it, and that is why Joel wrote in such a frustrated tone, despite knowing that a lot of the problem is just not knowing a lot about the disability movement, or knowing only bits and pieces.  He and I have both been involved in so many other parts of the disability community that we know autistic people's struggles are way within the realm of normal for the disability community, and yet autistic people are often distancing themselves from the disability community in ways that uphold stereotypes that the disability community is trying to overturn.  So basically, it's pretty much guaranteed that every time an autistic person says "We're not disabled because..." or "Some of us aren't disabled because..." they're unintentionally setting other politicized disabled people back, who don't want disability viewed that way either.  (And in case anyone's wondering, political views in the rest of the disability community say nothing as to severity under the medical model either.)

Wanted to add something that might also make the harshness of Joel's tone more comprehensible.  Remember, Joel and I have both had a lot of involvement in other parts of the (political) disability community, as well as many of the autistic communities.

Now, just imagine yourself in the following situation.  You are in a community you love and have a strong attachment to.  You like a lot of people in this community.  But you constantly, constantly, hear statements like the following, including from some people you really liked:

"I don't have Asperger's.  I'm not some asshole who thinks they can self-diagnose as an excuse for being a jerk who can't get a date."

"Hey, I'm not some kind of autistic retard here, you know."

"Being autistic means there's something wrong with you.  Period.  There's nothing good about it.  Ever.  At all."

"How can you even imagine that there's a good side to autism?  Don't you know what a tragedy it is?"

"Autism eats entire families alive."

"Being Asperger's means living a life of constant suffering."

Now, no matter how many times you try, politely, to explain that these are actually all misconceptions and/or just outright insulting no matter who they're said to, most people just go right on saying them.  Including a lot of people you like.

And you don't want to just leave this community because everyone's being so insulting, because aside from this there are so many great things going on in it.  But it really gets old after awhile, especially when these comments are being made on a regular basis.

And you put up with this for years.

That's what it's like running around the autistic community as an autistic person who has had extensive experience in other parts of the disability rights movement.  Except in the autistic community it's generally at times when people are trying to explain how autistic people and other disabled people are different from each other, and how autistic rights and disability rights are inherently different things.  (Or even, as some autistic people have done, justifying our distance from the disability rights movement by the fact that some disability rights activists are extremely ableist towards autistic people.  Everyone, after all, has biases, mostly unexamined.)

And the people don't mean to be insulting.  But they seriously, seriously are.  And, you can sit there and repeat to yourself that it's only because people don't know that every single thing they're saying has been covered over and over again in the disability rights movement, that in a lot of respects people are reinventing the wheel, that they don't mean to be insulting, and so forth.

But after awhile it gets to be too much and occasionally you end up ranting, and then people take you as the hostile and insulting one.

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I think we both have disability rights issues and civil rights issues.

Disability rights for the things we need and civil rights against discrimination.


The disability rights movement is a civil rights movement.  Among other things, it's against discrimination on the basis of the ways people are excluded from society based on what they can and can't do, which translates to, why are what disabled people have seen as "needs" and then the same things for everyone else just met by society?  And haven't people in every other civil rights movement needed things too!?  That's another area I get frustrated, is what on earth do people see the disability rights movement as if it's not a civil rights movement?  (Which is, exactly what it is.)

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When most people say "Autism is a disability" they mean that they think there is something wrong with autistics and that people with autism need to be fixed. If you don't agree with that sentiment, then I don't think playing word games in which you redefine "disability" is the best way to express that disagreement.


How about instead of griping at me for happening to come from a background in the disability community and happening to use words the way other disabled people use words, and instead of expecting me to write out a treatise on a community with decades and in some cases centuries of history just so you can be satisfied that I'm not playing word games, you actually look into some of the history of the disability community yourself?

A person could claim that you're playing word games for using the word 'autistic' in some manner other than the way most people do.  Just about everyone here does, you know.  Most people use the word 'autistic' to mean someone who has no concept of other people, no communication skills, and pays no attention to reality, someone who lives in an institution and has no hope for their lives.  You don't use the word 'autistic' that way, do you?  But it's not a word game when you don't use it the same way, is it?  I don't think it is.

The disability community uses the word 'disability' in a way that you don't happen to be familiar with it.  Your conception of disability is the same as the worst stereotypes of autism, in contrast to how most disabled people use it (and they all use it differently, just as people on here all use autism a little differently, but most don't mean it the way people here do).  (And when I say "your" I mean a lot of people here, but not all people here.)  

How on earth can you expect people to do the work to figure out you don't mean what everyone thinks you mean by autism, if you start accusing people of playing word games the moment someone uses a different definition of disability than the negative stereotype you're used to?

Every time you say, "We're not disabled, because we're not defective," you're doing the exact equivalent of people who say "I'm not autistic, because I have hope for my future" or "I'm not Asperger's, because I'm not a jerk who self-diagnoses just to excuse the fact that nobody likes him."

Here's some things to Google before you start distancing yourself from other disabled people again (because you're part of a history here whether you know it or not, the same way I'm part of world history, Western history, and American history whether I know a thing about it or not -- you can't escape this, it just exists):

Disability Rights Movement
Disability Politics
Disability Culture
Disability Pride
Disability Art
Self-advocacy movement
Social Model of Disability

Remember, the assorted disability movements have been around way longer than any but the most individual acts of autistic activism.  We're talking decades.  We're talking, a lot of the ideas that floated around in order to help form the autistic rights movement would not have existed without the disability rights movements, including also the self-advocacy movement.

You can turn your nose up at it all you want, adhere to the same stereotypes about it you were brought up with, but it'll still be there and autistic self-advocacy will still be a teeny tiny little twig growing off and surrounded by this huge branch called the disability rights movement.  Pretend that connection doesn't exist and we won't get anywhere.  And that's what Joel was saying.

One day, I'll be done collecting my enormous collection of quotes from assorted parts of the disability rights movement that shows that just about any stereotype autistic people throw at disabled people in attempts to distance autistic people from disabled people, is a stereotype that other disabled people are trying to escape.  And that anything autistic people are trying to accomplish, so are other disabled people.  Basically, we're not just similar, we're identical, we're right in the middle of all the things they're trying to do (when taken as the basic principles), not off towards the edge, and I really don't understand what on earth this instant impulse is to distance ourselves.

Especially since they've been at this a lot longer than we have.  And accomplished more.  We could learn a few things.  If we weren't so damn busy acting like we're better.  (And yes, saying "We're not disabled because we're not defective" is saying we're better.)

Oh, and a couple places to start:

Mouth Magazine
Ragged Edge Magazine

And a big day we started having recently:

Blogging Against Disablism Day

And... yeah.  I'm concluding the only reason some autistic people think we're so different from other disabled people is that they sit around in this insulated community only ever reading things by autistic people.  I could throw my bookshelf at you but I doubt it'd reach as far as wherever you are.  It's got stuff on disability from all kinds of angles, way more than the autistic community has got, we're just a tiny piece of that whole thing and I wish more of us recognized it.
Actually, the problem wasn't that people already need to know "everything" in advance.  The problem was that people indicated that they did know some particular things in advance, and then proceeded to show they did not actually know anything about those particular things at all, while insisting they knew it and therefore didn't need to actually learn anything.

Which, as I pointed out, is about as frustrating to deal with as someone who refuses to change their definition, ever, of the word autistic, no matter how much you point out that things in the world of autism have changed since around 1970.  And I find it very strange indeed that someone would find that aggravating yet not want to know about how conceptualizations of disability in general have changed since 1970 (and before).

And, yes, it's the conceptualization that changed.  It wouldn't matter what word we were talking about, in a sense.  Disability itself used to be seen as something permanently wrong with your body, then it became more and more (at least by disabled people) seen as a collision between variance in human patterns of ability and a pattern of discrimination, which tended to take certain moralized or medicalized tones.

I wish strangefairy had stuck around (and sorry for talking in the third person but I'd find it weird to use the second when someone isn't here) but have noticed before that they tend to see an attack when one isn't there (particularly around disability-related stuff, which I'd not only forgotten but didn't realize they were reading the conversation), proceed to lash out with a huge combination of "attacks" against them that have not actually occurred (presumably because they think they're about to and find the best defense... or something or other), and then vanish.

As for herding cats and autistic people just being off on our own, I don't buy it.  Not from what I've seen of autistic people.  I've watched autistic communities grow over years and years, and I've seen people new to the communities start repeating things before they know what they mean -- sometimes eventually learning what they mean, and then either deciding they do believe it after all, or completely changing their mind.  But at any rate, I've seen every single aspect of other communities in the autistic community.

And besides, it's not like we're each a bunch of isolated people wandering around.  We're a bunch of people talking to each other within a community.  We're clearly capable of everything communities do, both good and bad.  We're capable (as a group in general) of taking care of each other, but also of ganging up on each other, we're capable of spreading information rapidly, but also of spreading malicious gossip for stupid reasons, we're capable of building on each other's opinions collectively, but also of repeating each other's mistakes and groupthink through not examining each others' opinions carefully enough.  I think a lot of us have less experience in large groups than usual, but we're certainly capable of everything that a large group of any other kind of person can do.

I've seen enough I just plain don't believe autistic people are unique and special.  In fact, I know we're not.  We're not even alone in the collective delusion that we're unique and special, believe it or not.  It's all been done before.

The 'wider disabled community' doesn't have to understand anything about autistic people that isn't actually true.  And it is absolutely untrue that autistic people are so unique among all the variants of humanity that we are the only ones that ever feel like we just have to do it our way and couldn't possibly ever have a thing to learn from anyone anywhere else.  In fact, that's so blatantly common that there are several terms for it.  None of the assorted terms for it are flattering, nor should they be.  This is how people who aren't serious enough about what they're doing to actually double-check themselves against reality now and then, make sure they're completely ineffective.

There are a ton of things the wider disabled community doesn't understand or deal with well about autistic people.  But the fact that we're just too different to take any lead from anyone else, I'm sorry but I call bullshit, despite the fact that I can believe some autistic people really believe that (because it's a false stereotype of autism that's been drummed into our heads our entire lives, among other things).  I have read the books autistic people write over the years.  The early ones are heavily influenced by psychoanalytic theories of autism.  As they go on, what they describe changes, and changes, and changes again, based on outside theories of autism.  Most of what people sit around on these boards discussing, the terminology we use, the stereotypes we quite often adhere to, everything about autism we discuss almost, was created or inspired by professionals who are not autistic and know nothing about what it's like to be autistic.  The entire cultural climate around us tells us what it is to be autistic, and being autistic does not prevent us from absorbing at least some of us.

The little bit of it that's about how we're okay as we are, how we might have a hand in defining ourselves... that kind of stuff?  Well, a good deal of that stuff, and a good deal of the ideas of that nature that were floating around, long before AFF or any online message board of this nature ever existed?  While bits of that stuff come from stuff each of us have come up with, the autistic community didn't come up with it alone.  There'd be no autistic community -- I've seen what writing was like before the autistic community -- if a few autistic people hadn't gotten together and done a whole lot of things that were heavily influenced by the disability rights movement.  Otherwise we'd all, at most, be sitting around in support groups whining about how much we hate our lives, or even not gathering in support groups at all, because even that would be considered beyond us.  And even if we individually had qualms about some of this stuff, the ideas wouldn't have taken shape and taken off nearly in the form and direction they did without heavy influence from the disability rights movement.  And that's most of the ideas we get and toss around now.

So... wouldn't it be a lot better to actually look at what else they're doing?  We sit around all the time looking at what professionals are saying about us.  A whole lot of time doing that.  And that's not even about our rights.  So what on earth is so scary, or threatening to our uniqueness, or whatever else it is, about looking at the enormous body of knowledge that is out there, describing how to do a lot of the things so many of us seem very much to want to do?  That's what's out there in the realm of the disability rights movement.  If you dig deeply enough into it you'll see not only how non-unique we are but also a whole lot of strategies that we're still barely flailing at.

And seriously, if we can sit around getting all our knowledge from people like Simon Baron-Cohen or even the fricking Enneagram, and analyzing that to death for pages and pages of threads, what's wrong with looking up knowledge from people who, while their ideas might need tinkering to be shaped to us, are a lot closer to giving us a model for what we can do to make change?  What on earth is so threatening about that except for this bizarre and seemingly suicidal urge to drive a (false) concept of "disability" as far away from us as possible?  All the while apparently loving to sit around reading stuff from a very medical model of how we operate, while avoiding like hell a model of how to operate (as far as getting things done -- and by this I mean assorted aspects of disability rights movements) that, while it needs to be shaped to us, is a lot closer to be shapable to a political movement of autistic people than these weird medicalized theories of how we work are?

If these are cats around here, they're certainly all well-herded to a few particular points of view and a few particular favored activities, many of which aren't all that great for the goals they claim to want to accomplish compared to a lot of other things they could be doing.
I'm not going to get into all the assorted expressions of whether people are or are not mad at me and whether they can correct the minutae of my language usage.  Don't let the fact that I'm the messenger kill the message here, and there is one, and I'm hoping people won't just get caught up responding to the parts that have little to do with my main point.  So try not to respond to this paragraph.  Anything after it, fine, but try to make it about the main topic, not about whether I annoy you or not.

If you look into disability rights, you will see a whole lot more information that will help autistic people accomplish what most of us want to, politically, than you will see discussing Simon Baron-Cohen or theory of mind or any of that stuff.

You will find strategies that have already worked in some places.  You will find conceptions of disability that fit perfectly with what many of you find the real problems of being autistic to be.  You will find explanations that might even lead you to reconsider the source of problems that you think do stem entirely from being autistic.  You might even figure out why it is that my saying autistic people are disabled is different than saying autism is a disability.  You will find how people actually have closed down institutions before.  You will basically find all sorts of ideas that either already completely fit us but expand more than most of us have on them, and you will also find ideas that do not yet fit us but with a little tweaking will do just fine.

People have suggested that autistic people just plain don't get our ideas from other people.  But we do.  We're not different in that respect.  If we didn't get ideas from other people (which includes finding ideas to debate), there wouldn't be 416 hits for "theory of mind" on this site, 519 for "baron-cohen", 1870 for "empathy", 154 for "male brain", 651 for "temple grandin", etc., and that's all just in the parts of this site that can be Googled.  We clearly get a lot of our ideas from elsewhere.

So anyone who can get past the fact that they've gotten pissed off at me or I've gotten pissed off at them or my word use annoys them or whatever, look at the list of terms I described for googling, and the two or three links I gave, and the things Joel said to look up.  Those are just branching off points.  But while there is a place for debating the minutae of how the autistic mind works, that's practically all we do, and it certainly won't hurt anyone to look in a direction that's more useful in terms of ideas that will help get things done (things I know people want to see done, too, because people have mentioned it).
Regrading passing.  Someone talked about being uncomfortable identifying as disabled if they can pass.  

Actually, there are a lot of disabled people who pass for non-disabled some or all of the time.

A lot of the time, though, passing has to do less with whether it's possible to see something, and more with what people are conditioned to look for.  For instance, I can spot many sorts of neuro-atypical people who are supposedly passing.  I imagine that people familiar enough with assorted neurotypes would be able to, too.

One woman once mentioned that normally she passes as non-disabled, but if she and the other person were in a race to read a book, she would no longer pass at all.

Here's a couple things about this.  Warning that they're not just talking about most people's conception of "invisible disability", they're also talking about why this category might be less of a real one than most people imagine.  (Not because the people in it aren't really disabled, but because "invisibility" depends on so many factors besides the person's body.)  Also note the way this person uses language:  Disability is the collision between a person's body and an unsuitable environment (particularly in a medicalized way), barriers are the things, whether physical or attitudinal, that block the person from being able to function in that environment.

Tangled in the Invisibility Cloak
A Hard Look at Invisible Disability

Both by the same person.  (The reason I like her writing more than a lot of others is that she's both physically and cognitively disabled, and some of her physical traits include chronic pain, so she's doing something I described in my last post:  She's taking ideas formed mainly by physically disabled men, and trying to bend them into something better suited for lives like hers, mine, any of ours really.)

I should also note that for some bizarre reason I don't understand (any more than she does some of the time in her first paper), I sometimes pass for male.  This does not make me outside of or immune to sexism, and does not in fact make me male, and I'm only afforded certain aspects of the advantages given to men during that time (for instance, I'm not likely to be ogled or fondled in public -- although I was once publicly ridiculed for having "man-boobs") and there's always the possibility of that advantage being gone in an instant (the moment they realize I'm female, and at that point it could even be worse for me than if I just looked female in the first place).

Erving Goffman also writes about passing from a different standpoint in his book Stigma.  Those of us with a "stigmatized" trait (such as being autistic) that everyone already knows about, are called "discredited", whereas those of us who are passing are called "discreditable".  People who don't have the trait at all are not discreditable because they simply don't have it.  The category of "disabled" in the disability movement, encompasses both discredited and discreditable.

There are in fact people, usually physically disabled, who want to keep the definition of "disabled" narrowed down to encompass only people with certain traits and not others.  But that's also the same in any group of people, and just because people are discriminated against doesn't mean they don't also discriminate.  And it would be wrong to assume that everyone is disabled in exactly the same ways.  Like Cal points out in several of her articles, most people are aware of some people being disabled by ramps or by being required to walk for long distances, but most people are not aware that some people are disabled by fluorescent lights.

Sorry to keep quoting the same person over and over, but she also wrote something called Harry Potter and the Allure of Separatism about how nice it can seem to break up into our own little groups where we only have to deal with issues we already understand.  She talks about the problems that causes:

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Even within the disability community, even within the communities that work on disability rights, various subgroups adopt a strategy of tinkering with meritocracy so that the "right" abilities are rewarded and others treated as irrelevant.

A wheelchair user tells me that public transit does not need to be accessible to autistic people. She says that people should not be denied opportunity on the basis of physical ability, but that those with cognitive impairments should be under 24-hour-a-day supervision and control in special institutions built for us. An autistic tells me that public buildings do not need to be accessible to wheelchair users. She says that people should not be denied opportunity on the basis of cognitive ability, but that those with physical impairments should be under 24-hour-a-day medical care in special institutions built for us. And while we're fighting this one out in the disability communities and in the larger society, known barriers remain in place, barrier removal is treated as a handout and an unfair advantage rather than a just response to entrenched disadvantage, and I indulge in the guilty pleasure of imagining finding a group of like-minded, like-bodied people and seceding from disability rights. Wouldn't be too many of us: we'd be leaving a whole lot of people out. But we'd be the insiders for once, not the outsiders; and wouldn't it be great?


She then talks about how that kind of fantasy is good only as a means of keeping yourself sane, but not as a means of building a movement.

And in Critic of the Dawn (my favorite one) she discusses the caricatures of social-model and medical-model thinking.

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As I move through my life -- a disabled person -- two companions haunt me. They are imaginary, but in my dealings with other people, they are forceful. Sometimes other people cannot seem to sense me behind those phantoms. Sometimes I am forced into their masks, and falling out of character has consequences.

One I think of as an uncle. A descendant of Carrie Buck, of the Jukes and the Kallikaks, a cousin to the Rain Man and the wild children of the forests. You've seen him rocking in the corner, headbanging. He cannot speak and, people assume, has nothing to say. Sometimes he is a cute, incomprehensible child; sometimes a terrifying, incomprehensible adult. He is usually uncomprehending but sometimes manipulative; usually repellent but sometimes seductive. Violence swirls around him: sometimes he is a target, sometimes a perpetrator, sometimes both. He is an enigma, interpreted by others: he cannot define himself. He embodies the stereotypes, the paradigms of cognitive impairment, of my own particular set of labels. He's no different from me -- but he is. Get me in the right situation, and we look exactly alike. Get me in the right situation, and you can see no resemblance. Bruce, I call him in intimate moments, after a caricature I once saw on television.

The other I think of as a sister. A shadow twin. The daughter my parents wanted in my place, pretended they had. The sister my flesh-and-blood sister wished for. Me, but with impairment denied, defused, removed. Me, but with grace, stamina, social skills. She speaks for herself -- then again, she doesn't have to. She's no different from me -- but she is. Get me in the right situation, and we look exactly alike. Get me in the right situation, and you can see no hint of resemblance. Mary, I call her, after the aunt whose other name I was given.

I am encouraged to disassociate myself from my uncle Bruce, just as women, as African-Americans, as physically impaired people have disassociated themselves from him. People suspect, believe, that segregation, exclusion, institutionalization, may be best for him, for others. Best for that nebulous us. Bruce, they believe, would never participate in disability politics. He'd never be able to. But he represents impairment. So often, when people talk about protection and care, they imagine loving my uncle in my place.

If I am pressured to disown my uncle Bruce, I am also pressured to pass for my sister Mary. She's more comfortable for other people. She, of course, would never waste time on disability politics. It would never occur to her. But she represents disability. So often, when people talk about barrier removal and leveling the playing field, they imagine freeing Mary to live my life.


I'm sure "Bruce" and "Mary" are recognizable to a whole lot of us.  Bruce represents a model of disability where it's entirely inside the individual person.  Mary represents a model of disability where it's entirely inside the society and there are no "real" differences between the individuals.  

We're required to be "Bruce" when we're forced into situations where all anyone sees is that we're different from them, they don't see ways where we could actually meet, they don't even necessarily see us as having any mind or agency or anything.  We're hollowed out.  (This is, at least, how I'm often treated in person until and unless I type, and I've been treated like this off and on my whole life, but more and more as I've gotten older and the gap between me and other people my age has widened.  It's the way people treat you when they treat you like a THING, or when they talk baby-talk at you.)

We're required to be "Mary" when we're in situations where people pretend we're no different than them at all, or that we'd be no different from them at all if a few things were put in place.  I get this, offline at least, once I start typing.  I'm suddenly expected to function the same way a physically disabled person would, with a stable condition that won't change, and who has no cognitive differences from anyone else at all.  Suddenly I'm expected to, for instance, understand what people are saying to me, even though a huge amount of the time I've got no clue what they're saying.  And then my inability to match up to this standard leads to them getting really mad at me.  I bet people who pass better than I do get treated like her all the time.  I was treated like her more often when I was younger, sometimes but not always.

What she then tries to do, after describing them, is describe two ways of conceptualizing disability.  As entirely within the person (no changes to the environment necessary, because the environment's "already fair" and some people just never fit and never should,) and as entirely within the environment (with people "all the same underneath" as long as you remove a few, often simple-to-remove, barriers).  Then she tries to describe how these are both incomplete caricatures, and (as I read her, anyway) how the truth of disability lies somewhere in the intersection of unusual kinds of bodies (including minds) with outside situations that shut people with unusual kinds of bodies out.  Something that doesn't deny our difference at the same time as not denying the possibility of our participation in society.

And she gets into how, understanding these two major ways of representing disability, it's possible to find other ways of dealing with it that include both the realities of being different and the ways in which people who are different are shut out of things.

A person passing will probably identify with "Mary" in that description, the person we're all expected to be if we pass, but can never be.

At any rate, there's all kinds of interesting stuff out there like the things I just posted about.  And all kinds of disabled people... like certain people with MS, CFS, dyslexia, and other things like that, who can pass for non-disabled in certain contexts, but according to the more inclusive (read: less exclusionary) parts of the disability rights movement they're certainly disabled and have been fighting for the recognition of that for a long time.  

Oh, another thing is Coming Home to Disabled Country which is how a couple people were treated badly in some parts of the disability movement, because they were assumed to be non-disabled.  But one of them was the founder of the National Disabled Students Union, in fact.  (I understand why.  I went to the same university as her and their disability department sucks.)   ADAPT is a group in America that focuses on getting people out of institutions (mostly nursing homes, because of their physical-disability bias), for reference during that article.  (I was never offended by being called a "walkie" when I could walk, but YMMV.)  That shows how some disabled people are discriminated against within the movement.  But then again, some kinds of autistic people are discriminated against in some parts of the autistic community, and that doesn't mean we're not really autistic, any more than discrimination in the disability community means we're not part of it.

EvilZakkie Wrote:

erkolos Wrote:
Ofcourse it may be something great about labeling it as a disability right issue which I haven't heard of. To be honest I just have the feeling that disablity rights against autism discrimination would get less attention than civil rights against autism discrimination, but that may be prejudice.


The main advantage would be in strength in numbers. At the moment, with only 1 in 150 people diagnosed with autism, our numbers are pretty thin. By becoming part of the larger disability movement, our numbers are greatly increased.

Also, there's specific overlap with certain groups - for instance, I imagine that there would be Downs Syndrome advocates arguing against pre-natal testing, which is something we could join forces on. And there's plenty of non-autistic disabled people undergoing abusive "treatments", etc.


Indeed, the number of disabled people is closer to 1 in 5, and I suspect really more than that if you take it over a lifetime.

As far as overlap, I can't think of anything autistic people deal with that other disabled people don't.

This is why I have always found it easier to connect to the psychiatric survivors and ex-patients movement than the mental health consumers movement.  The mental health consumers movement tends to require a belief in the standard views of mental illness, the others tend to be more flexible and generally take anyone who's been within reach of psychiatry, regardless of diagnosis.  And they are less support-group-like and more political.

Not that politics shouldn't include assisting and supporting people, but there's a particular mentality inherent in most support groups that is anti-political.  Namely, the idea that it's mostly the person in particular who has to change, or at the very most their relationships with people immediately around them.  The broader context becomes lost, and focusing on the broader context is even sometimes viewed as a defense mechanism rather than a rational response to widespread injustice.

Ideally, I'd think that people involved in making change politically (by which I mean, in power relationships, and often in broad manners, I do not mean electoral politics usually), would be able to get together and support each other both in terms of practical stuff and in terms of being some kind of haven to go to when you're exhausted by the assorted pressures of sticking your neck out.  But it'd probably end up being called something other than a support group just to make sure that therapy-inspired ideas didn't get stuck into it.  Maybe it'd get called nothing at all.

Within the developmental disability self-advocacy movement, one book I read about starting your own self-advocacy group, said that, yes, you can start social groups, but keep it separate from the self-advocacy groups, because social groups are about having a good time, and self-advocacy groups are about getting things done.  And often if the two are combined, you end up with problems like, whether people's feelings are hurt being more important than whether people are endangered.  Etc.

Actually there's something I've noticed about all the really effective parts of any disability movement:  They're not divided based on diagnosis.  They may be divided, but it's far more broadly.

Within the developmental disability self-advocacy movement (the parts of it that actually work, anyway), there's no IQ police running around.  People seem to be welcome whether they have an intellectual disability, cerebral palsy, a brain injury or brain surgery (even if it happened when they were 16 or 17), autism, whatever.

Within the psych survivor movement, there's an outright disdain for psychiatric diagnoses.  They don't care what your label is or even if you have one.  They are not divided into a schizophrenia division and a bipolar division and a depression division and a trauma division.  They're just there.

Within the mainstream (and mostly physical) disability rights movement, there's people with a whole lot of different conditions, and a few without any, working alongside each other.

Yes, there are hierarchies, even in all of these movements.  I don't want to paint them rosier than they are.  There are divisions.  But, seriously, it's really, really rare that you get an effective movement that is into the label-police thing.  Because they're about making change for people who have been disabled (and the divisions going roughly along the ways in which they're disabled most frequently, but not according to specific diagnostic labels).  There's certainly work to do about connecting even the factions that do exist, but a lot of what is being fought against is the entire idea of medical people defining who we are.  And that includes being against the idea that just because we've all got separate diagnostic categories given to us by doctors, somehow means that we're oppressed in totally different ways.  In fact, the ways are often stunningly similar.  And most people start recognizing this after some point.

Autism was originally a psychiatric category.  Before it was psychiatric, those of us diagnosed and "treated" with things were split between the developmental and psychiatric realms for the most part.  And now it's considered neurologic and developmental.  Which means we've got feet in all the camps here by now, in terms of the sorts of common experiences we've had.  And it really amazes me at times to see a group that's been tossed around between all three groups more often than a whole lot of the others, claiming not to have any ties to any of them, and to be all isolated.  We're less isolated among the major disability categories than most disabled people, and we'll find common experiences in most of them.  (Although most of the major ones also have seriously common experiences with each other.  But we've actually been divided up between them to boot.)

strangefairy Wrote:
Anbuend-I recieved the orders you gave me.  I have to keep talking til you say i can stop, make myself available whenever you want,do and believe what you say, treat you the way you want, and your feelings take precedence over my PTSD and maybe my safety. Of course i will obey.


Okay, what I said was this:

Quote:
I wish strangefairy had stuck around (and sorry for talking in the third person but I'd find it weird to use the second when someone isn't here) but have noticed before that they tend to see an attack when one isn't there (particularly around disability-related stuff, which I'd not only forgotten but didn't realize they were reading the conversation), proceed to lash out with a huge combination of "attacks" against them that have not actually occurred (presumably because they think they're about to and find the best defense... or something or other), and then vanish.


What I meant was that I wished that you knew that people were not attacking you the moment disability rights was mentioned or a view that did not align entirely to yours was mentioned.

And thus that you did not feel the need to react in the particular way you do.  All of which translates to, I wish you weren't miserable.  

I wish a whole lot of things, none of which are orders.  I assumed you were going away for quite some time (much longer than you stayed away), so I talked about this wish in the third person.  If I were ordering you around I would do it in the first person.  It would look more like, "Hey strangefairy.  Don't under any circumstances go away.  You have to stay here and you have to respond to everything I and others say on this thread."  None of which I have said.

If you want (and please let me know about this, I am serious), I will no longer mention you or respond to you whatsoever, in the first or the third person, nor think about you, nor publicly wish that you were not miserable or wish that you were not responding in a way that miserable people do.  I will also not express any sense of caring about you, nor any sense that it is too bad that you are experiencing flashbacks.  Then you will probably not think that I am ordering you around, although I would also miss you (which is my problem, not yours, and you are under no obligation to do anything just because I miss you).

If this disclaimer helps:  NOTHING I am saying in this post is an order, an insult, or anything else of that nature.  You can do whatever you want to do as far as I'm concerned, and of course your and anyone else's safety takes precedence over my or anyone else's feelings.  You're under no obligation to respond, to stay here, or anything else, at least not on my account, and you never were, not even slightly.  You're probably hundreds if not thousands of miles away from me, and you are in control of your own life.  I do not need or want control over you.

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