Sunday 9 April 2017

30 Days of Autism Acceptance: Day 9


Day 9:    

Talk about Autism Speaks.  Do you support them?  What’s your opinion about their policies? And/or Talk about special interests.  Do you have a special interest?  What is it?  Feel free to infodump.

I would rather gouge out my own eyes with a spoon than support Autism $peaks.

(The substitution of $ for S is intentional and widely-used in the autistic community.) And I'm leaving the above statement alone to reinforce how much I mean it. I'm fairly tired today so this isn't going to be as in-depth as I might like, but it's a topic I will come back to when I'm a bit more mentally with it to do it justice. A lot of other Autistic writers have written a lot on the subject and I don't know how much, if anything, I can add to it. So here's a summary:

  • They speak ALL THE TIME and claim to speak for us but they don't listen to us; they actively shut us down when we tell them they're wrong, when we tell them our preferences, when we question them in any way - I've been shut down, silenced, kicked off one of their pages for daring to use identity-first language (and getting shouted at by AWPs who told me I didn't know what I was talking about) and for questioning the accuracy of one of their posts, and I've come across a number of other people who've had the same and who've been harassed by A$ for expressing their feelings and for speaking
  • For a long time they had no autistic representation at all; John Elder Robison was the last one but he resigned in 2013 because he overwhelmingly felt that A$ weren't listening to us (you can read his letter here); recently they've got a couple but I, and many others, aren't convinced and feel it's nothing more than tokenism, a way of trying to win us round and persuade us to support them, rebranding themselves - it feels too manipulative and inauthentic
  • It's only recently (in the last couple of years, if I remember rightly, though I'll need to check) that they've stopped pushing the vaccines-cause-autism lies despite it being repeatedly debunked, and they've never apologised for it
  • Only 3-4% of all the money they raise goes to actually support for families with autistic children (they've generally not been interested in supporting autistic adults); they pay a lot of their staff ridiculously high salaries, way beyond what's needed to live comfortably, and they've paid a number of speakers insane amounts as well
  • Since their inception they've pushed for a cure, genetic testing and so on; about a quarter of their money goes into research. While in theory I'm not opposed to identifying autism genes if it will enable people to be identified much earlier (I was 28 when I was diagnosed and could have been saved many years' struggle if I'd been picked up at a young age) IF it means that they will more easily be able to access appropriate support, the reality is that it doesn't mean that, it means the enabling of eugenics, which means finding specific genes that they can then eliminate - after all, one of A$'s long-term goals has always been to eliminate autism completely. "Cure" also means elimination of autism, elimination of people like me and so many of my friends. It means completely changing our very essence. If I were to be "cured" I would be a completely different person. I will never take any kind of "cure".

    Recently they've changed their mission statement to remove the word "cure, but it strikes me as nothing more than a publicity stunt, more effort to manipulate autistics into thinking they've changed and are better, into supporting them. Especially because they talk about a "solution" - which, let's face it, is just another word for "cure" and it's pretty damn obvious that that's what they're going for. And a lot of us in the autistic community can't stop our brains from adding the word "final" before "solution" (I'm not just saying that; check out Un-Boxed Brain on Facebook for supporting articles).
  • Language use by A$ is generally pretty dehumanising. They presume our incompetence, they persist in pushing person-first language even though we've told them again and again and again that the vast majority of us favour identity-first language, they talk about us as "broken", "a burden", "a tragedy". They never talk about any of our positives; they focus solely on the negatives, because to them, we have nothing good to offer
  • And speaking of language, I Am Autism, their short PSA film from 2009. Look it up. It's truly horrific. It contains lots of the most dehumanising language regarding people like me that I've ever heard and if you want to have any idea of how they truly see us, this is it. They have never apologised for it, never said that they regret it. Nothing. It still sits there and people still watch it and believe it.
  • MSSNG - a campaign of theirs that pushes the notion that we are broken, trapped, a "normal" person held captive by autism. I am not broken. I am not trapped. I am not held captive by my neurology. It's more dehumanisation and demonisation of us and it is NOT ACCEPTABLE.
  • Did you know that their Light It Up Blue campaign inherently ignores autistic females? Blue is associated with boys (these days, at any rate), and they chose blue because most people diagnosed with autism are male (though there have recently been improvements regarding the undiagnosing of females, there's still a long way to go). By using blue they are sending the message that they don't care about autistic females.
  • Refusing accommodations - a woman got a job with them, asked for accommodations because of the care needs of her autistic son (nothing difficult), and then they withdrew the job offer; for an organisation that's supposed to be about autism and helping people affected by it, they've got a funny way of showing it; there's never been any kind of apology from them for it
  • A$ has a long history of supporting/being apologists for murderers; this is specifically regarding parents who murder their autistic children because they "can't cope" any more (Issy Stapleton, Alex Spourdalakis, etc). A$ tends to express sympathy and pity for the parents and support them, helping them get off with lesser charges, encouraging the public to side with the parents because these children were such burdens etc. You know what, A$? Maybe if you stopped using so much of your funding for your outrageous salaries, event costs and so on, maybe if you stopped throwing so much money into a eugenics agenda that autistics have repeatedly said we don't want, perhaps you could use that money to help way more families that need it than you currently do!
  • The Judge Rotenberg Centre is a centre that A$ has allied itself with that regularly practises ECT (electroconvulsive therapy - electric shocks to the brain) on autistics and promotes it as a "treatment", often without the autistic person's consent; many autistics have spoken out against it and it's caused permanent damage to people.
 There are other reasons that I'll discuss another time but this is the short version.

I might do a Part B post about special interests later.

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