On 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.

Tags: templegrandin williamssyndrome autism hierarchies functioninglabels neurodiversity eugenemarcus hingsburger disability politics autismcommunities ethics