I had a few comments on my Facebook page today wondering why I was posting links to blogs protesting against what Autism Speaks is currently doing, so I thought I’d write a quick primer.
The problem with Autism Speaks
I’ve written before about why I don’t support this organization. Boiled down to headings the four main reasons are:
- They’re eugenicists (it’s right on their website!)
- They are anti-autistic
- The money they raise doesn’t get spent on support or services for autistic people or their families
- They spend a ton of money on executive compensation and independent contractors
What’s Autism Speaks doing right now to get people worked up?
They’ve arranged a “Policy Summit” at George Washington University
Why is that bad? Well, as is usually the case with Autism Speaks, no autistic people are involved, invited or wanted. You can read the joint ASAN-AAC statement on that travesty here.
Suzanne Wright, co-founder of Autism Speaks, wrote a heinous ‘Call to Action’
You can read the full thing here. Jess, who blogs at Diary of a Mom, has tried for years to work with Autism Speaks because she believed their attitudes towards autism were evolving. Her extremely eloquent post about her feelings towards Ms Wright’s call to action can be found here. I strongly recommend that you read that post.
What exactly is so bad about Suzanne Wright’s Call to Action?
After reading Jess’ post you may still be thinking to yourself, “ok, the language is over-wrought and dramatic but that’s just used as an attention grabber! It’s used to raise awareness, attention and money. Think about the ends, not the means, Deanne!” Here’s why that’s not ok:
- I don’t want Autism Speaks to get more money because they don’t spend the money on helping autistic people or their families. If you follow my blog then you know how passionate I am about AAC. Only 4 cents out of ever dollar Autism Speaks raises is spent on services for autistic people – guess how much of that 4 cents is spent on AAC? My friend Kerima points out in her post here, “no research funding is going to technology that provides more effective augmentative alternative communication devices, when the primary challenge to autistic individuals throughout their lifespan is communication. Assistive technology solutions for autonomous living are not funded by Autism Speaks research money.”
- Autistic children and adults are reading things like this Call to Action and believing that they are burdens; destroyers of families who impoverish the people they love and make them ill. Don’t believe me? Read this.
- The ripple effect of the sort of language Ms Wright uses is immeasurably damaging. When autistic people are viewed in these terms it dehumanizes them, which makes them easier to abuse and easier to murder.
If your reaction to this is – “got it, what can I do?” then Paula C. Durbin-Westby has handily summarized it for you.
If you live outside the United States, don’t give Autism Speaks your money and don’t ‘light it up blue’ in April. If you live in the U.S. then in addition to those two things, you can contact your congressional representatives and tell them that Autism Speaks doesn’t speak for you or your family – the details of how to do so are in Paula’s blog post above.