Content/trigger warning: Autism $peaks, eugenics, violent ableism
I don’t know what I’m doing. I feel like every other neurodivergent activist who writes as part of their activism knows what they’re doing. But I still feel like I have to try. “Stay afraid, but do it anyway,” right?
And yeah, I know, I know, I started this blog to work on destigmatizing mental illness. And being Autistic is not a mental illness, it’s a neurodevelopmental disability. But I’ve been talking about being Autistic a lot, right? It kind of follows that I might do an autism-related entry. And you know what? It’s my blog, and I’m officially calling it: This Is for You, Carrie is dedicated to destigmatizing neurodivergent conditions including but not limited to mental illness. It doesn’t sound as snappy, but it’s true. (Side note: “stigma” is really a manifestation of neurotypicalism. It’s a system of oppression, not just an unfortunate opinion. That’s important to keep in mind.)
Today I’m going to talk about awareness versus acceptance. And I’m going to talk mostly about autism, but mental illness too. Let’s start with autism.
April 2 was “Autism Awareness Day”. Some in the Autistic community call it “autism bewareness day”. (Note: you’ll always find an Autistic person with internalized ableism who is into awareness and says “person with autism” and believes autism is a tragedy. There will always be token minorities who are lickspittle to the kyriarchy because resisting is hard. That’s part of their journey, but it doesn’t mean they’re right.) Autism awareness campaigns are usually spearheaded by an organization called Autism Speaks, known to the Autistic community as “Autism $peaks” or “Voldemort Speaks”. Aside from promoting stigma, here is a brief list of shit that Autism Speaks has pulled:
- Misusing their funds. They have a very low score on Charity Navigator. Only 4% of their funding goes to supporting families with an Autistic family member. 44% of their funding goes to research, which…
- ..is pro-eugenics. Their research goal is selective abortion of fetuses that may turn into Autistic people. Not only is this, again, eugenics, but it doesn’t help Autistic people and promotes the idea that it’s better to not exist than to be Autistic. Read that last sentence a few times until you get it.
- They chased John Elder Robison, their only Autistic board member, off of their Science advisory board by being unresponsive to his feedback. For most of their existence, they haven’t had any Autistic people on their board of directors. I think they have a few now, but that’s still basically like having a women’s rights organization run almost entirely by men. Think about that.
- They use functioning labels and person-first language, which are inaccurate at best and dehumanizing at worst.
- They violated copyright and profited off an Autistic self-advocate’s writing for three years. Source: http://yesthattoo.blogspot.com/2014/01/autism-speaks-are-work-stealing-white.html
- -They don’t talk about Autistic adults. Apparently we don’t exist.
- They misrepresent Autistic people. They show the “quiet angel” stereotype and the “self-injurious, unpredictable screeching and rocking in the corner” Autistic.
Now let’s talk a little about Autism $peaks and my favorite topic: stigma.
- Their advertisements and films are about what a burden Autistic people are to society and the people around us.
- You know what? Let’s talk about those films. “Autism Every Day” featured a member of their board—their former vice president—talking about how she wished she could kill herself and her Autistic daughter. She also said that the only reason she didn’t do this was because she had an allistic child. Oh, and she said this in front of her Autistic daughter.
- “I Am Autism” is a short film that includes an ominous voice, meant to be the voice of disembodied autism swanning about the cosmos, saying things like “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails”. Yeah, you heard me. They compared my fucking brain to cancer, the thing I research for a living.
Credit to the amazing goldenheartedrose for providing a lot of this information here: http://goldenheartedrose.tumblr.com/post/17644810872/so-whats-the-problem-with-autism-speaks. The inimitable Autistic Hoya, who is a better writer than I could ever hope to be, also writes a lot of great stuff about Autism $peaks. http://www.autistichoya.com/2012/07/georgetown-say-no-to-autism-speaks.html
So I hope it’s clear why anything run by Autism $peaks is going to be shit. I’m not cursing just to curse here either. I mean reproachable, irredeemable, vile, evil shit.
Let’s talk more about their autism “awareness”. It seeks to make people aware, not of how Autistic people are disabled by society or of how we deserve accommodations, but of how our existence is tragic and how we need to be fixed. Their logo is a puzzle piece to represent how we are a puzzle that needs solving, and they have used the slogan “until the pieces fit” and the Twitter hashtag “MSSNG” to reinforce this. (They took this image from the National Autistic Society in London, which used a puzzle piece to represent how ~puzzling and ~mysterious autism is, and they included a crying child on the puzzle piece to represent how much Autistic people ~suffer from being Autistic.) They also bought into Simon Baron-Cohen’s bullshit “extreme male brain” theory to the degree that their logo is blue for boys, contributing to the idea that more boys are Autistic than girls. (Yeah, yeah, I know, the WHO says that too, but that’s because women and girls are underdiagnosed. I wasn’t diagnosed til I was 23 in part because I am a woman.) In short, autism awareness campaigns are bigoted and harmful to Autistic people.
Needless to say, I don’t like awareness campaigns. This makes me nervous when I see awareness campaigns for mental illnesses. “Awareness”, to me, will always have the connotation of “be aware, these people are Other”. It matters quite a bit, though, who runs the campaigns. Autism $peaks’ flavor of “bewareness” is motivated by allistics who hold an inherently bigoted view of Autistic people. Many mental illness awareness campaigns are actually run by people with the illness. That makes a huge difference. I would still prefer to see acceptance campaigns because I don’t like the connotation of “awareness”, but that might be me.
Of course, in a perfect world, we wouldn’t need awareness or acceptance campaigns. But in terms of what the mentally ill community currently needs, I would like to see more of an emphasis on understanding symptoms and what kind of support mentally ill people need. A lot of awareness campaigns do things like list statistics about how many people commit suicide every year or how many people have a particular mental illness. That is useful information, of course, but I would like to see it go a step further and give more information that humanizes those of us who are mentally ill. Numbers alone don’t give us faces.
I think that’s all I have for now. I meant to write more about acceptance vs. awareness for mental illness, but April is hard for me. I only have so many spoons to write about activism.
Carrie Fisher quote of the day, which feels pretty apropos: “I am a spy in the house of me. I report back from the front lines of the battle that is me. I am somewhat nonplussed by the event that is my life.”
Mentally ill activist and angry Disabled loudmouth. Neuroqueer as hell.