Tuesday, September 4, 2012

Invite self-advocates to explain what ‘they’ want

Nothing about us without us
Image credit: A Diary of a Mom
“Jess,” the author of A Diary of a Mom, recounts a conversation with Liz Feld, president of Autism Speaks, in her Aug. 21 blog.

Specifically, Jess shares her thoughts about a question that she felt uncomfortable answering:
“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?’
“It took me four days to answer the question. I finally wrote the following.
‘The other day, you asked me what they (self-advocates) want. I don’t know if you caught it – but I was somewhat stymied by the question. And it’s bothered me ever since. I wondered if I couldn’t answer it because perhaps I just didn’t have the handle on this that I thought I did.
‘But then I had a revelation.
‘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.
‘What they want is to not be the “they” in this conversation but the US.
‘That’s the answer to your question.’”
Jess expresses gratitude that Feld has begun reaching out to self-advocates.

I appreciate Jess deferring this question to “us” and I second her hope that through these conversations, “the gap can be bridged, changes will be made and that when Autism Speaks it will be autistic voices that we hear.”

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