pardon j'ai pas encore la patience de faire la traduction:G.O.B. a écrit :Rien que la 1ère phrase (L’autisme est une maladie aux ravages grandissants.), en incluant juste après l'ensemble du spectre...
“In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.” -- Temple Grandin
https://ballastexistenz.wordpress.com/2 ... s-elitism/
etOn Wrongplanet.net, there’s a recent interview with Temple Grandin. In the interview, Temple Grandin says:
I would think in an ideal world, you don’t want to have people who cant talk, but on the other hand, you definitely don’t want to get rid of all of the autism genetics becvause if you did that, there’d be no scientists. After all, who do you think made the first stone spear back in the caves? It wasn’t the really social people.
She also says:
No, I would not support [something that cured all the autism genes]. because there is a point where mild autistic traits are part of normal human variation. Because on the other end of the spectrum you have Williams Syndrome, and if you look at the brain abnormalities, they’re exactly the opposite of autism. the whole back of the brain, where the hard drive is–there isn’t too much there. But all the social emotional circuits are hooked up so [people with Williams Syndrome] are hyper, hyper, social. I’m gonna bet you there’s a lot of yackety yackety salesman that don’t talk about much of anything who are Williams Syndrome variants. But then you get to a point where a person [with Autism] cannot talk, they’re self injuring themselves, and they cannot live independently. That [is something] you would want to eliminate, if possible, but you would not want to get rid of all the autism genes because you wouldn’t have any computers– you wouldn’t have any scientists.
And:
The problem with the whole thing on curing autism is we do want to do something about low functioning autism. But the upper end.
So, as far as I can tell, the only reason she wants people like me around at all, is because we’re genetically related to people like her and people like her are useful to society. This sentiment seems widespread.
As regards Williams syndrome, I can’t help but remember the end of another Hingsburger book I read. It was about a woman with Williams syndrome. She’d grown up with no exposure to other people like her, and while her parents loved her, a lot of the people at school gave her a lot of trouble for being different. She had, unlike some other people with Williams syndrome that Hingsburger knew, no other people with Williams syndrome to discuss this with, no chance to see that people like her could be valued, no chance to see people like her who were proud of what kind of person they were.
Williams syndrome comes with a certain shape of face. She knew this. And she started trying to destroy her face. Any time she saw a mirror, any time she saw another person with Williams syndrome, anything, she’d try to punch her face or claw it off. When she died, she died terrified that she was going to meet the God who made her into a “defective” kind of person.
If people think this has nothing to do with people making public statements to the effect that people with Williams syndrome are empty-headed and useless with “nothing back there”, they’re wrong.
If people think the reason that I am afraid to look in a mirror or at photographs of myself has nothing to do with people making public statements to the effect that people who have trouble talking and don’t live “independently” and self-injure are useless unless we’re either made into some other kind of person or repositories for the genes that “balance out” the human race from other useless people… they’re wrong too.
This is why I hate the whole concept of the “HFA/AS community”. I know someone who was told explicitly that people like him were not welcome at a meeting for “HFA/AS people” because he looked too “low-functioning” and couldn’t talk some of the time. If he’s out, then I’m certainly out. I suppose we offend people’s delicate sensibilities or something?
Note that I think the division between low-functioning and high-functioning is completely artificial. I do not regard myself as either one because I do not think it is possible to divide up autism that way. I do not think there is a straight continuum from Asperger’s to “full-blown autistic”. I think that there are too many aspects of autism, that can be different in each person, for it to be possible to just draw a neat line as if autism is one trait that varies in “severity”. I say this because sometimes people get the impression that I consider myself low-functioning. I don’t. I don’t consider myself high-functioning either.
But I know that the categories do have a sociological meaning, and that in various aspects of my life I get put on both sides of that sociological meaning. I have been officially labeled low-functioning for whatever it’s worth, and I don’t mean in early childhood. And on the net I’m regarded as high-functioning until proven otherwise because I can write well. I’ve been invited to otherwise “HFA-only” things by people who only know me from the net, and to otherwise “LFA-only” things by people who only know me in person.
And believe me, I would fight just as hard if there were a push to see “LFA” as the only valuable ones, or the only real autistics, or the most pure autistics, or the ones with the truly special gifts that “HFAs” can’t have, or anything else like that. And I have fought sentiments like that where I’ve seen them. Because they do exist. But they are nowhere near so rampant as the “HFA/AS” elitism I see all over the place. So I spend most of my time fighting that.
I think that my existence brings more meaning to the world than simply to pull the gene pool towards the really valuable people. I think that the existence of my friends brings more meaning to the world than simply to pull the gene pool towards the really valuable people. I think that the existence of people with Williams syndrome brings more meaning to the world than to serve as fodder for other people’s intellectual snobbery. And I think these things are true whether or not we hold jobs, or learn certain things.
The name of this blog is “ballastexistenz”. That means “ballast-existence”. It was once widely used in anti-disabled propaganda to try to weed us out of the human race entirely. The reason I titled my blog this, is to highlight that I’m fully aware that I and many others still hold that status in many people’s minds, and to expose that kind of hate for what it is. I don’t believe in ballast-existences. But most people so labeled, even those presumed to be unaware of it, become well aware in some way or another that we are regarded as useless ballast to be tossed away if possible.
That’s where you get people with Williams syndrome trying to rip their faces off. That’s where you get people like me afraid to think about what we look like. That’s the result of this garbage about what kinds of people are and are not useful in the world.
Unfortunately for Temple Grandin’s “ideal world,” we’re not going anywhere. As Eugene Marcus, who Temple Grandin probably also thinks is pretty useless, said, all people are real in the deepest sense of the word, there’s no such thing as a non-human human, even though many of us look, to say the least, non-standard. That sounds like a much better attitude to me.
http://ballastexistenz.wordpress.com/20 ... this-time/
This is an unfortunate addition to my previous post, Temple Grandin, displaying near-textbook “HFA/AS elitism”. Because I have obtained Temple Grandin’s expanded tenth-anniversary edition of Thinking in Pictures. Here are some quotes.
Page 56:
There is concern among people with Asperger’s that genetic testing could eliminate them. This would be a terrible price to pay. Many gifted and talented people could be wiped out. A little bit of autism genetics may provide an advantage though too much creates a low-functioning, non-verbal individual. The development of genetic tests for autism will be extremely controversial.
Page 122:
Many individuals with high-functioning autism or Asperger’s feel that autism is a normal part of human diversity. Roy, a high-functioning autistic, was quoted in New Scientist, “I feel stabbed when it comes to curing or treating autism. It’s like society does not need me.” There are numerous interest groups run by people on the autism/Asperger spectrum and many of them are upset about attempts to eliminate autism. A little bit of the autism trait provides advantages but too much creates a low-functioning individual who can not live independently. The paradox is that milder forms of autism and Asperger’s are part of human diversity but severe autism is a great disability. There is no black-and-white dividing line between an eccentric brilliant scientist and Asperger’s.
In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.
I don’t quite know where to begin with this. It’s not just autistic people who can be good inventors, and I’ll leave that part at that.
The really problematic part is, yet again, her view that so-called low-functioning non-independent non-verbal autistics are useless. If Temple Grandin reads this blog (and I sure wish she would read and understand Donna Williams’s and my responses to her anti-“LFA” sentiments), I hope she knows that she is essentially telling me that the world would be better off without me in it.
She draws a distinction between natural human variation and disability. It’s the usual stereotype, “natural variation good, disability bad”.
Well anyone who believes that, wake up! What you call disability is part of natural human variation and always has been. People with easily-recognized l33t Asp1e sk1llz, or whatever they are called these days, are not the only people of value on this planet, and the rest of us care just as much about impending genocide as you do. Don’t think that, if all us undesirable useless retards were all magically eliminated, you wouldn’t be next. The standards for normalcy only tighten when certain people are eliminated, and you would find yourselves in the position we now occupy. Even if you still want to throw us overboard to save yourselves, many of us will fight you on that.
(For anyone who has mischaracterized me as “angry” in the past, I really am angry while writing this post. But I tend to think that being told that you have no value in the world, especially by people in power, is enough to piss anyone off. Being pissed off in situations where it’s natural to be pissed off, doesn’t mean I walk around pissed off all the time. And the fact that I’m mad right now, doesn’t mean I’m wrong.)
Anya Souza is one of my heroes. No, not because she’s “overcome disability” or any of that fake-heroic crap. It’s because of the more traditional definition of hero, a person who puts themselves out there to fight for what is right. The article I Am A Person, Not a Diseasedescribes her fight to stop the prenatal eugenocide of people with Down’s syndrome, which she herself has. I’m not sure Temple Grandin would come up with a lot of “uses” for Down’s syndrome, but Anya Souza seems clear that it’s a part of natural human variation.
Before anyone tells me that Anya Souza is high-functioning for someone with Down’s syndrome, let me tell you about David. I was locked up with David. He had Down’s syndrome and, like a disproportionate number of people with Down’s syndrome, he was also autistic. He made one sound over and over again, and was regarded as “not being in there”. But everyone but some of the staff valued him for who he was. To us, he was another person, a real person, not a mistake or a defect. To some of us, he was a friend. The problem was not that he was autistic, not that he had Down’s syndrome, and not that he was classified as low-functioning, but that he was born into a world where these things are not considered compatible with full personhood.
Let me be clear: When I talk about neurodiversity, I mean all neurodiversity. Not just the people that Temple Grandin happens to find worth in. I am fighting for a world in which there is a place for every single one of us and our value is not even questioned. I know it’s a long way off, but it’s way better than fighting for a world from the standpoint of, as Cal Montgomery puts it, “a legacy…of exclusion rather than inclusion, hierarchy rather than egalitarianism, and an imagination that was meant to open the world to certain kinds of people and then slam shut forever.“
I honestly think Temple Grandin owes an apology to the many, many autistics she has used her position as the most famous autistic person on the planet to devalue. But more than an apology, she owes us a serious attitude change. Not, mind you, just because of our “feelings”: It’s our very existence she could help eliminate in the future.
