Thursday, March 21, 2013

Autism Speaks, I Want to Say....

I realize your campaign this year is targeting my family. You are trying to tell me you represent my nonspeaking son and me as his parent. I can tell you if you want my attention this is not the way to get it. Let me give you some help, so your next film effort is less, how should I put this, offensive.

1. Don't "hack" my son's brain. I find the concept of "Hacking Autism" offensive. When I use dictionary.com to look up the definition of the word hack the first things I see are:

hack1   [hak]  Show IPAverb (used with object)
     1.  to cut, notch, slice, chop, or sever (something) with or as with heavy, irregular blows (often followed by up  or down  ): to hack meat; to hack down trees.
     2.  to break up the surface of (the ground).
     3.  to clear (a road, path, etc.) by cutting away vines, trees, brush, or the like: They hacked a trail through the jungle.     4.  to damage or injure by crude, harsh, or insensitive treatment; mutilate; mangle: The editor hacked the story to bits.     5.  to reduce or cut ruthlessly; trim: The Senate hacked the budget severely before returning it to the House.
The word brings gruesome things to mind! So associating this verb with my son's Autism, which primarily rests in the wiring of his brain, makes me want to grab him and run far away from you.

2. Stop degrading the Autistic individuals in your films by allowing their own parents to insult them. Example: During your film, a mother describes words spoken about her own son: "he's really sweet for a kid with Autism". This is called socially ingrained ableism. You know a type of socially ingrained bigotry. Here is another example from my own life as a woman of color. When it was announced that I had gained membership in the National Honor Society, a guidance counselor followed with "I'll be damned. She's pretty smart for a black girl!" Your film shows this young man's mother is ableist about her own son.  Sadly she doesn't even realize it. She thinks she's said something kind about him.  This brings back memories of Autism Every Day, which I have been trying to forget since I saw it.

3. Be Inclusive of the Whole Spectrum. All Autistic people can and do benefit from Augmentative and Alternative Communication (AAC). The video, by excluding Autistic people with verbal speech who can and do use AAC  supports, perpetuates the "not like my child" and function label tropes. This video could have  included everyone in the community to show how AAC and FC positively impact the lives of all individuals on the spectrum regardless of age. My son is an AAC user, but I also know children who have verbal speech and use AAC support to help with challenges to expressive and receptive communication such as auditory processing disorders and selective mutism.

4. Let Autistics Speak Freely. Here was a great opportunity to turn things around. Have Autistic people of all age ranges use AAC and FC support to "speak". Families placed their nonspeaking children before your cameras, trusted you to present their families fairly and your organization again went and turned them into "Jerry's Kids".  I grew up with the Jerry Lewis telethons, the wheeling out of the poster children and circus-like atmosphere, all in the name of raising money. My advice is to leave those tactics out of your fundraising efforts.

5. Give Equal Representation. It will never happen, but I must keep insisting you provide equal representation by adding Autistic Adults on your board of directors and including Autistic adults as part of the real decision-making process in your organization. The world is full of capable Autistic individuals, who communicate with verbal speech or type. They have advanced college degrees, solid careers, and are quite capable of sitting on the board of your nonprofit organization. Many of them use their unique expertise in their chosen professions and their personal understanding of Autism to continually help many others in our Autism Community. I know how I would feel if the NAACP had a board of directors and every position except two were filled with White people. And if that organization insisted loudly that they knew what was best for people like me, people of color? I asked myself what I would do.  What if they attempted to drive public policy based on the idea that Black people, due to our racial differences, could not be allowed self-determination, the right to vote, or the right to be included in all aspects of public life?
Sound familiar?



Until you show you understand and respect the civil rights of my son and all those like him, you don't speak for him. And sadly, your latest fundraising film effort makes it clear that won't change.