Monday, April 16, 2012

Choosing to protest for autistic rights

This afternoon, I happened to mention to a friend that I wasn't going to make it to Maker Faire this year. It's May 19-20, and I'd just realized I couldn't realistically turn down a chance to sell crafts somewhere else on the 20th. And on the 19th, I had a much bigger commitment: Protesting for disability rights. She asked me to explain, but I was too tired to access the right mental files to explain why the Autistic Self-Advocacy Network is protesting the Autism Speaks fundraiser in San Jose on May 19, 2012. It was difficult to decide not to attend one of my favorite annual events to go get heckled by people who think I'm not really human, but I don't think I can justify skipping the protest this year.

The autistic community is in a justifiable uproar because of a recent string of parents killing their autistic children (often committing or attempting to commit suicide afterwards). How much of the actual blame for the murders is the mothers' own problems and how much is their misconceptions of their children being tragedies and burdens on society we can't know, but we do know that most of the public response to news reports has been sympathy with the killers. Sympathy based on the picture of autism as a tragic, devastating disorder that replaces children with mysterious automata and destroys families--the picture promoted by Autism Speaks to generate pity and raise funds.

Most of the funds Autism Speaks raises go to fundraising expenses and disproportionately high executive salaries. They have been so successful in positioning themselves as the go-to source for autism information and donations that other autism/autistic groups can't compete successfully. Of the funds spent on research, only a few percent goes to research into improved communication methods or anything else useful to autistics. Most goes to biomarker research so that parents can choose not to give birth to autistic children. Very little funding goes to programs that would support or teach necessary skills to autistics.

Public criticism (mostly by ASAN and local autistic blogger Landon Bryce) has encouraged Autism Speaks to tone down the derogatory language and fund a few token projects. It's hard to forget that a former leader of Autism Speaks, Alison Singer, discussed in a video her decision not to drive off a bridge with her autistic child in the car--and the reason she didn't was that she didn't want to abandon her non-autistic child. This was portrayed as a natural response to difficulty finding a good school for the autistic child. (Is it only a coincidence that this was the same motivation George Hodgins' mother claimed before shooting him and then herself in Sunnyvale last month?)

I don't know if our protest (7 people RSVPd so far) will change any of the hardcore members' minds about the organization, but we hope to have some effect on management (incremental) and perhaps friends of members who are just going to the walkathon due to social connections.

Here's what a fantastic non-autistic mother has to say about the whole (Autism Speaks-led) Autism Awareness campaigns:

Theoretically, I could do the protest in the morning and catch part of Maker Faire, but after a morning where I'm likely to have people shouting bad names at me, I probably won't be up to pushing through crowds at Maker Faire or representing TechShop.

I am a person, not a puzzle.

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