"What they want is for us to stop asking *each other* what they want."
Jess at Diary of a Mom links Todd Akin's ignorant comments on "legitimate rape" and abortion to the way that neurotypical "deciders", especially those at Autism Speaks, routinely treat autistic people with no consideration or respect:
Yesterday, President Obama said that Akin’s comments “underscore why we shouldn’t have a bunch of politicians, the majority of whom are men, making health care decisions on behalf of women.”
And that was when it hit me.
Last week, I had a pretty deep conversation with Liz Feld, the President of Autism Speaks. We were talking about the words that we use. About how we discuss autism in the public forum. About how difficult it can be to create a balanced perception of such a broad spectrum. About how we need to fight for help for the disabling aspects of autism while steering clear of demonizing it in order to do that. About how difficult it can be to set research priorities for such a wide array of people.
We had gotten into some of the nitty-gritty. I was explaining why a particular term was problematic and I said that I’d heard self-advocates condemn its use. She asked what they would prefer that we use. She really wanted to know how to better frame it. In context, the question came out, “So what do they want?”
And Jess gets the answer exactly right:
I can’t answer the question because I’m not the one of whom it should be asked. They are.
What they want is representation. What they want is to be included in the decision-making process. What they want is for us to stop asking *each other* what they want.