Getting the truth out on autism

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Omigosh! It’s her! The woman on the site Getting the Truth Out: https://www.gettingthetruthout.org/ is the very same woman who maintains the blog Ballastexistenz, Amanda Baggs: https://ballastexistenz.autistics.org/?p=52

This page is my favourite. You can say – oh my – some sort of splinter skill in that video. https://www.gettingthetruthout.org/pagee001.html

But I say – Oh wow – and now check out her blog. Doesn’t seem so low-functioning anymore, does she?

Getting the Truth Out spokesperson“My appearance and life are political in nature whether I like it or not. I often wish I could spend my time entirely around people who don’t have those two opposing views. People who just saw me. As roughly who I am. Without exaggerating the similarities or differences. Without awkward discomfort. Without rushing to prove they “understood that stuff all along” to mask the fact that they didn’t. And saw neither horrible empty tragedy shell for my appearance nor amazing genius for my typing. Nor the ghost of who they wish or imagine I was or would have been.

I’ve met people like that. But Getting the Word Out ensures that it will be harder and harder for any autistic person to meet people like that. Because they have more money and power and credibility in the eyes of many. They will be believed. Our voices will be lost and denied. All of us.”

Here she’s quoted in an interview with Cal Montgomery, ‘Autistics Speak’, on Ragged Edge Magazine:

“With Getting the Truth Out,” says Kim, “I wanted to write a site that started out like the typical descriptions people use to raise money, along with the typical photographs, and all that kind of thing, so that the people who would normally read that sort of thing would take interest and read further. And then to show what is really behind that stuff — not just ‘behind the autistic appearance’ or whatever, but how people use these images of us, how they stick their own captions on them, and how they pretend to know better and all that, when all of it is a way of getting money, power, recognition, etc, without truly making anything any better for us.”

6 thoughts on “Getting the truth out on autism”

  1. Dear Amanda,

    Was looking up the Eugenics movement in America, and how it led to the Holocaust. Found this Image Archive – OMIGOD, thanks for telling me.

    https://www.eugenicsarchive.org/eugenics/list3.pl
    The philosopher George Santayana said, “Those who cannot remember the past are condemned to repeat it.” This adage is appropriate to our current rush into the “gene age,” which has striking parallels to the eugenics movement of the early decades of the 20th century. Eugenics was, quite literally, an effort to breed better human beings – by encouraging the reproduction of people with “good” genes and discouraging those with “bad” genes. Eugenicists effectively lobbied for social legislation to keep racial and ethnic groups separate, to restrict immigration from southern and eastern Europe, and to sterilize people considered “genetically unfit.” Elements of the American eugenics movement were models for the Nazis, whose radical adaptation of eugenics culminated in the Holocaust.

    You can find a chronicle here. It’s so sad:

    https://www.dnai.org/e/
    Eugenicists were bound to try to apply their new knowledge of genetics to humans, but the movement lingered on even after it was clear their science was hollow. The families labeled as genetically unfit could just have easily been called victims of fate and poverty.

    … Hitler read Fischer’s textbook Principles of Human Heredity and Race Hygiene while in prison at Landsberg and used eugenical notions to support the ideal of a pure Aryan society in his manifesto, Mein Kampf (My Struggle). When he came to power in 1933, Hitler charged the medical profession with the task of implementing a national program of race hygiene – a key element of which was passage of an act permitting involuntary sterilization of feebleminded, mentally ill, epileptics, and alcoholics. Within a year, more than 50,000 sterilizations were ordered, and doctors competed to fill sterilization quotas. By the outbreak of the Second World War in 1939, an estimated 400,000 people had been sterilized.

    There are also video clips on Dr. Jamison, a manic depressive who’s written about manic depression. She talks about what it felt like when a doctor told her not to have children.

    I hadn’t thought that way and I don’t think that way and I wanted a house full of children, and so the, I didn’t, I wasn’t asking his permission to have children. I, it didn’t strike me that it was any of his business, and I told him to go to hell. I also told him that I was Director of the Mood Disorders Clinic at UCLA and I was completely aware that it was a genetic illness and I didn’t need to hear that from him and so forth. But I went out to the car and I just started sobbing, I just, I was, it was just uncontrollable anger, but mainly hurt. It was just a level, when people assault your genes and when those genes are involved in who you are so utterly in terms of temperament and the way you think and the way you feel and the way you view the world, as these genes are, these are very complicated, these affect every aspect of your humanity, that for somebody just essentially to say you ought not to have someone who has you, your kind of problems. It’s just like saying you ought not to have been born. And I must say I’m glad my father didn’t have that attitude, and I’m glad my parents didn’t take that belief.

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  3. Ballastexistenz, thank you so much for commenting. I love what you say about medicalization having a ‘subtle or not-so-subtle distorting effect’. It’s potentially dehumanizing too, when things are taken out of context, or put into wrong, or inappropriate contexts.

    I’ve just started to read your blog. It’s fascinating and so well written. Comments on your blog are also wonderful to read. There’s so much to explore.

    Your site ‘Getting the truth out’ is powerful. I’m very interested in that sort of thing – when words and images are used to prejudice and distort, to pathologize. I hope you didn’t mind that I linked to you, and posted a photo from your site, and excerpts. I was so delighted to see that you added a personal comment to explain more. 

    You probably know, if you’ve looked at some of this blog, that I’m no fan of psychiatry. And since low functioning/high functioning are psychiatric labels, I have no respect for the terms. But I imagine most everyone else does. Still, I should have written something.

    Again, thank you for explaining.

    Speaking about labels, I found the following on the Nazi psychiatric label ‘degenerate’. Don’t know if you’ve seen it, but I thought you might be interested …

    Psychiatrists: The Men Behind Hitler
    “In 1931, while Dr. Heinze was a physician at the children’s outpatient department at Leipzig, he collaborated with Paul Schroder on a book called Child Personalities and Their Abnormalities. In the first paragraph of the introduction, they define what they mean by the word ‘degenerate’: It ‘is not equal to ‘sick’. ‘Degenerate’ also includes the oversized or undersized person, the athlete, the highly talented, the genius. A degenerate in the psychological area is someone who…deviates above and below the average.’

    Heinze was dedicated to defining, segregating and exterminating certain classes of people, following the dictates of the state economy, Nazi doctrine and the precepts of ‘racial hygiene psychiatry.'”

    Isn’t that something? Conformity and uniformity taken to twisted extremes.

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  4. Don’t forget the thing about low and high functioning being fairly meaningless terms. 😉

    The descriptions and pictures of me on the first part of Getting the Truth Out are how I’ve generally been described when described in a medicalized light. They’re not false, as such, but they’re incomplete, just as they are incomplete for every single autistic person who they are used on. Medicalization has a subtle or not-so-subtle distorting effect.

    I was meaning to do exactly what I said above, and also to evoke hopefully what people seem to see and react to when they look at me in person for the first time with no other knowledge of me. Because in print, with no other knowledge of me, people immediately imagine something totally different than my actual appearance. I wanted to give people the reverse experience, of encountering me in print from other people’s eyes and then rapidly shifting to what I really think about things. (In order to accomplish everything I said in the interview.)

    So, no, I don’t seem that low-functioning in print (unless I’m having language problems), but then, low-functioning is a simplistic illusion anyway, as is high-functioning, seemingly convenient but ultimately useless. (As I tend to demonstrate every time I… uh… do anything.)

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