This week has been good and bad.
A major autism organization started this off by posting a really horrible essay (the comments are actually good on this one, though – another thing that makes me proud of my community) about their policy summit. Besides for other horrible stuff in the essay (we’ll get to that), the actual summit will apparently consist of a bunch of people chosen by Autism Speaks to tell government “what autism says.” One group is absent though: autistic people. Our voice isn’t important to the group that claims to tell people what autism says.
Immediately, several autistic-run organizations sprang into action. I was thrilled to see an organization I’m part of, Association for Autistic Community, quickly decide, YES, this is something we need to speak out about. We joined with ASAN, an autistic-run group that is extremely effective in advocating for the well-being of autistic people, in issuing a joint statement about what Autism Speaks has done. But we weren’t the only ones to make a statement: Autism Women’s Network made a statement of their own.
Then, we saw a powerful advocate organize a protest of the Summit. From all accounts, it was a successful protest.
See that? In the span of about 48 hours, we’ve (autistic people, that is) issued formal statements and organized a successful protest against an event. But, uh, sure, we’re not qualified to sit at the table for discussions about what to do about the problem of our existence put on by an organization claiming to understand something intrinsic to our being.
I’m proud that our community did this.
But that’s not all we did. Many, many autistic bloggers wrote about the event. Here’s just a few:
- Paula wrote, Autism Speaks Kidnaps “Policy Summit”
- I wrote about what I thought about the horrible essay Suzanne Wright wrote.
- Elsa wrote, Autism Speaks Doesn’t Speak for Me.
- (edit: this item and any below it were added after the post was initially made) Lydia wrote, Autism Speaks and Representation
- Autistic BigBro wrote, Why I am Angry Against Autism Speaks, and Why it Matters
Of course some of us did a bit more digging. Lydia discovered that Judge Rotenberg Center was one of the featured exhibitors at the Washington DC Autism Speaks Autism Walk (edit: I thought it was an upcoming walk, but it was a past walk). Lest you don’t know about JRC, you can watch the below horrific video used in a trial against them:
Again, this video is very disturbing, only click if you can handle that. In the video, a kid is shocked for refusing to remove his coat.
Ironically, Autism Speaks previously issued a statement against the use of shock by JRC. Now, they featured them as a resource to parents at their most well-known event, their autism walk. Disturbing indeed. For what it’s worth, the trial ended in a settlement. I’m proud our community stands up to this and continues to fight – and publicized the support given by Autism Speaks to the only school in the USA to use electric shock to discipline students (and, yes, other students get students that had problems in other programs, a common refrain used by people to justify awful behavior).
This morning, another surprise event – John Elder Robison, one of the only (if not the only) autistic voices on an Autism Speaks advisory panel, resigned. He wasn’t the only one. A mom, invited by Autism Speaks, who personally knew Suzanne Wright (one of the founders), spoke out about the hate as well in one of the most powerful pieces written this week.
But this wasn’t all – our other allies have been here too. Parents are fed up with being told that their kid is a horrible, diseased, terrible, a drain on society, and destroying their families. And they’ve shown themselves to be the allies we (and their children need) – and very much in disagreement that they aren’t “living” but merely existing (as, apparently, a family with an autistic family member exists, and doesn’t live, according to Autism Speaks). They’ve all written brilliant texts that show their main worry about Autism Speaks isn’t political gain, but rather the well-being of their child. Autism Speaks hurts their children.
- Sharon wrote, “Dear Ms. Wright, Autism Speaks, and any others out there who may read this.” She wrote of what how the hate affected her autistic son, who read Suzanne Wright’s essay over her shoulder.
- A dad wrote, “A Mouse that Roars – Standing in Defiance of Autism Speaks“
- Heather wrote, “The Price We Pay for Autism Speaks“
- Deanne wrote, “Why are so many people mad at Autism Speaks right now?” to try to explain the situation.
- Stuart wrote, “Autism Speaks is not and has never been listening despite their slogan“
- (edit: the below were added later…) Neil wrote, “Living, not Existing“
- Jo wrote, “Why I Won’t be at the Autism Speaks Walk this Saturday“
- Jessie wrote, “Autism Speaks Isn’t Speaking for Us“
- Emily wrote, “Why Autism Speaks Doesn’t Speak For Me“
- Shannon wrote, “No Misery, This is Autism, Suzanne Wright“
- Lucy wrote, “A Reporter’s Guide to the Autism Speaks Debacle“
- Laura wrote, “Who Does Autism Speaks Speak For?“
(edit: I also came across this after I made the initial post) And then there’s people like Spaz Girl who aren’t parents of autistic or autistics but might be classified as “just an ally” (there is no such thing as “just an ally” – you all are very important). She wrote This is the Week that Autism Speaks Meets its Downfall.
(edit: added to the original post) Special education professionals also are speaking up! Tim wrote, “The Best Argument Against Autism Speaks: A Special Educator’s Perspective.”
(edit: also after I made the initial post) Even the Autism Society of America (historically hostile to autistic people, but this organization has seen tremendous change in the last few years) has made a statement.
I am proud of my community. I’m proud of these allies. I’m proud that there are people in my community who get it. Who understand that slick advertising isn’t enough, that there actually has to be some substance behind saying you care about autistic people.
I’m so damn proud. We don’t need Autism Speaks to speak for us. Thank God.