by Debra Hosseini
Suzanne Wright, a founder of Autism Speaks, published a controversial op-ed piece on Monday this week. I don’t follow Autism Speaks and I try to stay out of politics so I didn’t even know of the blog. Kelly Green, founder of Autismhwy.com who is very involved in the advocacy movement for autistic people, called me in fumes.
“I can’t believe what she’s saying. She has the entire autism community enraged,” Kelly says.
I tell Kelly I think Suzanne Wright’s piece ia politically driven to make potential donors feel sorry for autistic people and their families. I’m used to this tactic. Many years ago I was involved in an organization involved in state-wide advocacy in California. One of the leaders of the organization, who was a former Secretary of the Senate and is now a lobbyist, told us that we had to make politicians feel sorry for us in order to get funding. He also said “there is nothing good about autism.” Shortly thereafter I resigned from the California Autism Coalition. I also turned off the news.
Our kids internalize the messages they hear in the media and I don’t want Kevin (my son) hearing these negative messages, especially from an organization who’s mission is to support autistic people. Autism Speaks has a huge media presence. What is the message they are spouting?
From Suzanne Wright’s blog autism “families are not living.” We’re living a life of “despair.”
Why are they spreading a message of fear? I’m sure they have many media specialists they consult with before they blog. Do the media specialists tell them that fear will get them more donations?
I try to teach my children discrimination. What we see on TV and in the media is often wrapped in a package that has no substance. According to the Autism Self Advocacy Network, Autism Speaks only gives four percent of it’s entire budget to Family Service Grants. You’d think if Suzanne Wright was so concerned about families more money would be allocated.
Today, Kelly called me with hopeful news. John Elder Robison, author of Look Me in the Eye and Raising Cubby, resigned from his roles with Autism Speaks. I hope you read his blog because he’s eloquent in his reasons why he’s resigning.
John Elder Robison’s blog is so well-written, it speaks for itself. I asked people on the spectrum to comment on this topic.
April Dawn Griffin says, “I was horrified to discover how autism is seen. A lot of things happened to me growing up but I was never told I was disabled.” she goes on to say “We speak with art, song, poetry, even in silence we are speaking for ourselves.”
Jennifer O’Toole writes “Who is anyone else to say that my life is defective? That my genes are less? Our nation fought a war about 50 years ago against the notion that one life is less human, less valuable, less real than another. What’s the difference now? We are again hearing of barbarous bleaching treatments – of efforts to “undo” the genetic differences that make us, us. I believe, word gymnastic aside, that’s called eugenics.”
The Art of Autism will keep you abreast of other’s opinion on our daily newspaper.
The Art of Autism’s mission is to shift the dialogue about autism. We support John Elder Robison in standing for his truth. We also don’t deny that many families have significant challenges and would love if Autism Speaks morphed into an entity that actually helped people on the autism spectrum, instead of devoting so much of their time to finding an elusive “cure.” We publish articles about what self-advocates say. Young Finn Christie has an opinion about What’s Wrong with Creating Perfect Babies.
April writes about the piece above “This is about being hushed and ignored – based on gender the day I drew this self portrait but it applies to autism too. That’s what it feels like when someone hushes you and speaks FOR you.”
Why doesn’t Autism Speaks support little organizations by having a free resource fair? Don’t they want to help the families living in “despair”? The fees to be a vendor at their fairs are exorbitant. Many “little” organizations that do much good can’t afford to be at Autism Speaks Walks. What’s that about?
I usually don’t write negative blogs because I choose to focus my energies on supporting positive change. This is an exception. I hope on April 12 in Covina people who really support autism and their families decide to attend the Autismhwy.com Autism Chalk Walk Festival and opt out of the Autism Speaks walk event at the Rose Bowl. My vision is that people who give money will know and embrace what they support. Give donations with intention.
Here are a few wonderful organizations that the Art of Autism supports. They all accept donations.
Artists with Autism
The Autism Chalk Festival
The Celebrate Autism Foundation
Autism Movement Therapy
The Miracle Project
Seeds for Autism
I know there are so many organizations that support people on the spectrum, feel free to comment about your own.