Sunday, June 7, 2015

Sunday Roundup - Autism Speaks Didn't Speak to Me

I had three published essays and five blog posts this week.

One of them was on the problems with Autism Speaks, published in the New York Times - Motherlode Parenting section. It was important to me to put this piece in a high profile, high prestige, publication. I keep meeting smart, well-intentioned, people who do not know the controversies surrounding Autism Speaks. So I wrote:
Autism Speaks is a charity which describes itself as dedicated to helping people who “struggle” with autism, funding research into “prevention, treatments and a possible cure.” They have been criticized for their mission, their rhetoric, the makeup of their leadership, and the way they use their funds. To me, the most important criticisms come from autistic individuals, who see the charity as “eliminationist” – seeking to eliminate autistic people. The Autistic Self-Advocacy Network has adopted the motto “nothing about us without us,” in part to criticize the lack of autistic leadership in Autism Speaks. Some autistic bloggers condemn the “light it up blue” campaign for “autism awareness” that takes place every April, because they want acceptance, not awareness. I am unable to find an answer from Autism Speaks to those criticisms; when invited to comment for this piece and given ample time to do so, they did not respond.
Autism Speaks is welcome to respond at any time. I sent an email on 5/21, a few hours after talking to a VP who said he'd offer a comment. I'll publish their response in full. If they believe in their mission, they should believe it strongly enough to publicly debate.

One issue is that they define autism in such a way to exclude any autistic person who contests their definition of autism.

I also wrote a piece for Al Jazeera America on "Inspiration Porn."
In 2014, a disabled woman named Stella Young took the stage at TEDx in Sydney and introduced the audience to the concept of inspiration porn. She explained that disabled people are most commonly seen only in stories and images that pornographically “objectify one group of people for the benefit of another group of people.” She had been writing and speaking about this topic for a while, exploring the various ways that disabled people were used to make other folks think mostly of themselves. For example, inspiration porn sometimes shames the viewer by showing a disabled person overcoming basic obstacles, implying that anyone less disabled has no excuse. Another variant focuses on individuals helping people with disabilities, suggesting that others should help too, centering attention on the helper, not the recipient. In all cases, disabled humans get treated as props.
I also wrote a blog post about  Reading Inspiration Porn Through the Social Model. I think that's going to be a useful tool down the road.

Finally, I wrote another Game of Thrones review for Vice: On Jon Snow as Hero. These are fun to write and I'll do another late next week, before the final episode.

Other posts:

No comments: