Text: If you really want to be an advocate, start by listening to the people you claim to be advocating for.
Earlier today, I sent the following email to Liz Feld, President of Autism Speaks. It is short and not particularly well-written, but it is what it is. I didn’t feel the need to repeat what I’d said in countless other emails. Clearly, they never had much of an effect anyway.
When I heard from a friend today about Autism Speaks’ new documentary, I was overwhelmed by sadness, anger and frustration and I had to say something. I don’t imagine that Liz will choose to respond given our last exchange following my most recent post about AS, but I had to send it.
I had to say something.
This community works so damned hard to create a world in which autistic people – no, in which ALL people – are viewed as fully human, whole, worthy of compassion, support, and respect. Autistic people fight every single day to find the smallest pockets in this world in which they can be safe. Not even comfortable, happy, productive, respected, loved … just SAFE.
No matter how hard I try to bite my tongue for the sake of continued dialogue with those who are still involved with AS, I simply can’t do it anymore. I can’t stand idly by while those who claim to speak in this community’s name tear our efforts – tear our community – apart.
I just can’t.
My daughter is depending on me not to.
I’m writing what feels like the same email I’ve written so many times before, but, well, here I am again, scratching my head.
I heard this morning from a friend (who has long been an enthusiastic supporter and fundraiser for AS) about a line in the documentary shown at the Lurie Ctr in which a mother says that she couldn’t trust her son to strangers because “most days *I* want to kill him. And I love him. How is someone else going to have the patience?”
(Ed note: Just to be clear, while I linked to Susan Senator’s post for information on the documentary and Susan is indeed someone I consider a friend, she is not the person to whom I refer above.)
An off-hand line meant to be wry humor? Probably. Even a little bit funny given that autistic people are routinely neglected, abused and yes, murdered by their parents and caretakers (and the parents and caretakers are then viewed with sympathy for *their* plight) and the fact that autistics have begged you all again and again (and again) to change the tenor of your rhetoric so as not to encourage / condone violence against them AND on the heels of the PR debacle of Suzanne’s call to action in November? No. How does this keep happening?
I’m lost. I’m just really, really lost.
Read about the widespread, autistic-led effort to boycott Autism Speaks HERE.
Read my post about AS Founder Suzanne Wright’s November Call to Action HERE.
Read Amy Sequenzia’s post about the conversation that followed HERE.
Read Peter Burns’ Open Letter To Suzanne Wright on behalf of the Arc HERE.