Temple Grandin, displaying near-textbook “HFA/AS elitism”

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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

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

21 responses »

  1. The funny thing is, if one measures the value of people by their contributions to society, then it should be the other way around. I’ve learned far more actually useful and eye-opening things from you, Cal Montgomery and others who don’t fit Grandin’s idea of the “useful autistic”, than I ever did reading what comes out of the “AS elite” community, despite the fact that until six months ago, Grandin would probably have put me in the “useful” category.

    • “But I still don’t think I could describe what I think my main contribution to society is, or what anyone’s main contribution to society is. To me it is like we are all pieces of something larger than even human society and each piece has a definite and exact place, and the shape of that place is the shape of our lives, which even we can’t totally understand.”

      I think this is quite possibly the most beautiful thing I have ever read. What an amazing world we could live in, if all of humanity shared your clarity, Amanda. Thank you for being here!

  2. I would think that contributions to society (if measured at all) take a lot of different forms. Cal and I both contribute certain ways of looking at life. Temple Grandin is usually looking at an entirely different area, from a totally different angle, when she’s doing information-stuff. Most of her work is in animal science.

    But I still don’t think I could describe what I think my main contribution to society is, or what anyone’s main contribution to society is. To me it is like we are all pieces of something larger than even human society and each piece has a definite and exact place, and the shape of that place is the shape of our lives, which even we can’t totally understand.

    Which is why I draw a huge distinction between “I can’t figure out what this person contributes” and “This person doesn’t contribute” — that’s a distinction that a lot of people don’t make. I tend to view all people as integral in some way to the overall shape of things and to be integral in ways that are not possible to understand, and that are never going to be quantifiable in terms of rather transient human cultural values such as “having a job” or “being a very polite person” or “giving out certain information” or whatever.

  3. I tend to view all people as integral in some way to the overall shape of things and to be integral in ways that are not possible to understand, and that are never going to be quantifiable in terms of rather transient human cultural values such as “having a job” or “being a very polite person” or “giving out certain information” or whatever.

    Yes, that’s the sentence I was looking for. Thank you.

    I never could understand why people with certain jobs (or no jobs) were less valued than others, I guess at least partly because so many important people in my life have been on disability. I did internalise such values for myself, however, to be able to push myself past the breaking point before my diagnosis. Since my collapse, I’ve had to reverse that conditioning, which led to a conclusion much like yours even including me.

    Hmm, I feel a blog entry forming.

  4. Dr. Grandin’s comments are awful.

    I know a man who is absolutely, positively Williams syndrome. He had the blood test which is conclusive in WS world… He’s mostly normal looking but has traces of the ‘williams face”. He’s quite attractive, by my standards and his wife is really pretty. When I used to exchange emails with him on a regular basis, he was in a masters-degree program studying some kind of physiology/biology.

    He wasn’t “normal.”

    Anyway, he’s unusual for WS, maybe, for his level of education, but it proves Grandin’s stupid broad statement about having “nothing back there” is wrong, besides being rude and unethical.

    This young man had his photo and information on one of the main WS websites for a day or two, I saw it, then he asked for them to take it down. He got hate mail from parents of “low functioning” WS kids who seemed to hate him for being “high functioning”, so he didn’t want people to know his email or his story. So I won’t tell you his name.

    Things may have changed for him, I don’t know, I don’t follow WS news now.

    I resent that she values the analytical side of autism so highly. My ASD kid is more like the WS people, which is how I got into WS. Xe’s not that analytical, not obviously, and xe loves people, though xe’s not very sophisticated at all at chit-chat or understanding others’ motivations, etc.

    I’m guessing she’d say that I contribute to society or to the gene pool enough to justify my existence, but that my child is so much dead weight to be tolerated.

    I resent that.

    Hard to say what she’d say about my ex-husband–my kids’ father, or his mother or her mother….

    Grandin just dodged a bullet, she could have ended up in a back ward somewhere and dead at age 15 from neglect, but she was born into a rich educated family. She’s only “high functioning” because of all the extensive help she’s received. Not that support is the only thing that makes people “high functioning.” My child couldn’t be “high functioning” like Grandin with all the support in the world.

  5. I admire Dr. Grandin, and I confess I need to go back and read the complete interview, but feel compelled to note that as a vegetarian, I question the value of her own contributions to society. From my perspective, she makes it easier to justify the slaughter of millions of animals each year just because we believe they’re suffering a little less than they used to. I’m not really that radical a veggie, but it is worth considering that a person’s overall value to society is a very relative quantity.

  6. I’m glad you brought this up…the entire Autism community, from within and without, is far too fractionalized and Temple’s arguments are ridiculous. I can’t believe she can segregate like this!

    Estee

  7. Could you tell me the title of the book that talks about that woman with Williams Syndrome? Or what the book was about?
    It’s ironic, in a sad way, because of all the various rare syndrome groups I’ve found, the Williams Syndrome community seems to be more tolerant of diversity than many others. There are things on this on WS page about looking for the silver linings of troublesome traits, and about recognising that “mentally retarded” people should be given jobs related to their strengths/interests, which for WS people tend to be music and interacting with people. And WS broke my stereotyped view that chromosome anomalies (WS appears to be due to 7q11 deletion) never result in increased ability in any area. I thought the only possible “benefits” of a chromosome anomaly would be character traits like the tendency for Down Syndrome people to be very caring (not saying all are like this, but I know of some examples where a DS person did a nice thing an NT wouldn’t have done. For example, my Dad knew this guy who decided to try to pick a fight with a “retard” and the guy he decided to fight with, who had Down Syndrome, was very reluctant to fight. He kept saying “people get hurt in fights”. But finally he gave in, punched the NT guy, knowcked him out, then burst into tears, saying he’d told that guy people got hurt in fights.)
    This one phrase I particularly like, “mentally assymetric”, was coined by someone involved in Williams Syndrome, I think maybe a parent of a WS child.

  8. OK, so I guess my comment on another tread about Temple Grandin was not all that welcome…
    My question is the same. I would really appreciate a dialogue with folks who have Autism to help me.

  9. Pingback: Sweet Perdition » Blog Archive » Outlander!, or, Whose Neurodiversity is It, Anyway?

  10. I once knew a woman with Williams Syndrome- she seemed quite content being
    herself- very outgoing, friendly lady who did improv theatre and loved to
    party. She was so friendly and outgoing and much loved by her friends and
    collegues yet often stressed by the lack of response she got from people-
    definately not a case of “nothing back there”.

    I wholeheartedly agree with everything you write Amanda
    (We have chatted at TMOB several times). I am so-called
    neurotypical but not so vain as to not realize that I am both high functioning
    AND low functioning-depending on the situation. Who is to judge? When I am
    with a group of autistic people-suddenly deficits I didn’t know I had,
    come to light (my awful memory or my vague communication style for instance)
    I always say, some of the highest functioning people I know are
    low functioning! Indeed I have one friend on the spectrum who is considered
    low functioning by everyone in his life yet he has the most profound sense
    of ethics- he has taught me so much about feeling powerless and policing
    behaviors… Perhaps functioning, like beauty, is in the eye of the beholder?

    This HFA/AS Elitism is becoming rampant-keep up the excellent work in
    debunking these myths.

  11. Pingback: Ballastexistenz » Blog Archive » Temple Grandin devalues us again, in print this time.

  12. So sad the world. My son would definitely be regarded as low-functioning, but most who meet him like him, and he brings so much love into this home. My fear is not because of him but because of what others will try to do to him when his Dad and I are gone.

  13. Despite the fact that Lorna Wing has disowned both the AS label and the autism spectrum, the aspies are still trapped inside their little bubble that they’re somehow the alpha autistics of this fabricated hierarchy.

    Even though I’ve been diagnosed with the AS label, I can’t stand the AS demograph online for these misguided views. Too arrogant for my liking.

  14. B”H

    Shalom Aleichem,

    I have noticed that *SOME*, not all, but *SOME* of my fellow AS have adopted the elitism that you describe. That is unfortunate. I want you to know that I do not share in it. I do not think that most AS folks do share in it.

    Now, as for the cure vs. anti-cure issue, my problem with the “cure” faction is that they never define what they mean. Do they intend to identify the genes responsible for autism and then to terminate pregnancies based on gene detection? Do they intend to make such terminations *MANDATORY*? What does “Autism Speaks” mean when it suggests a cure? The ethical issues are tremendous, and the “cure” party does not tell us what they mean by the term. They make it impossible to have an honest discussion.

    Let me be clear. I oppose eugenics. That is a form of evil that the world should have eschewed in 1945 at Nuremberg.

  15. B”H

    Improper Grammar: “I do not think that most AS folks do share in it.”

    Correction: “I do not think that most AS folks share in this elitism.”

    Improper Grammar: “What does ‘Autism Speaks’ mean when it suggests a cure?”

    Correction: “What does ‘Autism Speaks’ mean when this organization refers to a ‘cure’?”

  16. I love how you expressed your thoughts on the quotes from Temple Grainden. I just saw the movie based on her, fabulous! You are very articulate and well spoken, I hope through practice to be a strong writer like you! I have been diagnosed with some disordes that make school extra stressful for me. I will continue to read your page:D..this is a neat page you have!
    -Adrienne

  17. I don’t believe Temple meant to be rude on purpose when she said that people with WS don’t have much going on in the back part of their brain. If you look up any stats on WS you will find that at least 75% of people diagnosed suffer from some kind of mental retardation. So clearly, the other 25% would represent the people that “do not fit” the label. Temple is not making rude comments just to be rude, she probably didn’t even realize she was being “rude,” anyway. I think you are misconstruing her message.

    Also, to the vegetarian, you are hoping to realize a utopian dream where slaughter houses won;t have to exist, but this reality will never actualize. As long as there are people in the world who love meat (and there are BILLIONS), there will always need to be huge conglomerate corporations to “get meat to the masses.” Temple Grandin is trying to make the process more humane. She is all about “respecting the animal,” which is a much better solution than saying “we should justget rid of the entire meat industry.” That is NEVER going to happen. No matter how much you want it to happen. We NEED meat to function and anyone who says we don’t is dead wrong. We get vitamin B12 from meat, and there’s no other way to get it other than eating MEAT. We have two canine teeth; the purpose of canine teeth is to TEAR MEAT. Obviously the propensity for eating meat has evolved within homo sapiens and is something that we need to survive. Our brains are so large, most likely due to the protein we got from EATING MEAT. Meat is here to stay, sorry to burst your bubble.

    • My problem with what she said has nothing to do with rudeness. It has to do with casual dismissal of the idea that people with intellectual disabilities actually have things going on in their brains — in other words really offensive prejudices. Your attempt to defend her by pointing out the existence of intellectual disabilities as if that explains everything, really doesn’t work. At all. I’ve spent more than half my life in programs alongside people with intellectual disabilities and they have as much going on in their brains as anyone else. I can’t even believe I’m having to say that. Makes me wonder what you guys think an intellectual disability is.

  18. It’s been my experience that ability to speak doesn’t make one high functioning (I know a lot of verbal neuronormal people who can’t do anything useful) and inability to speak doesn’t make one low functioning (two words: Stephen Hawking). My own son is verbal, but sometimes just barely, he’s super funny and loves to laugh and I believe he would make a great character actor some day maybe. That is, of course, if he doesn’t become a musician or a writer (he gets music and writing from both me and his dad.) He has great potential, and I am grateful to all the autistic adults I know who are working toward neurodiversity, providing me with insight, teaching me, to help make his future brighter.

    I don’t care if you can speak or not and in the information age with ready access to texting and internet chat, who needs to be verbal as long as they can type! If you can hold a conversation, tell jokes and are an interesting person, who cares about the other stuff? I certainly don’t and people who think they are somehow better then others with the same diagnosis simply because they can speak, are full of it. Sure Temple Grandin may have contributed to more humane treatment of cattle, but she doesn’t do anything to help with the more humane treatment of those who share her diagnosis and she should be ashamed of herself for that.

  19. I agree 100%. That is why I wrote this blog a while ago: http://nornwen.wordpress.com/2013/06/10/i-have-been-waiting-for-more-people-to-say-this/

    People normally consider me HF but I consider the label gross =P and inaccurate. They also question me calling myself an autistic, rather then an aspie.

    This might seem strange, but I have noticed that a lot more of the people who associate themselves away from the plain label “autism” also tend to not see the problematic aspects of organizations like Autism Speaks and the use of cure and fix language.

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