Today my friend Jess at Diary of a Mom makes public the story that tells you everything you need to know about Autism Speaks.
It's a story about Suzanne Wright, who founded the organization Autism Speaks with her husband Bob.
And who knows nothing about autism.
Suzanne Wright is the visitor in this story. The one who does not know not to touch an autistic girl's face. The one who ignores the child who tells her she hates it.
Someone walks over to our step to say hello. She bends at the waist, looming over Brooke.
Brooke doesn’t look up. She doesn’t stop stripping her stick.
Dig. Pull. Dig. Pull.
Our visitor reaches out a hand and cups it below Brooke’s chin.
I freeze. Oh God.
She uses the hand to pull Brooke’s head up by the jaw.
A thin line of panic starts somewhere deep. I know that Brooke is going to scream. 5,4,3,2 …
She does scream, but not in the way that I expect.
“I HATE BEING TOUCHED!!” she shouts.
I am flabbergasted.
Words. Self-awareness. Communication. Self-advocacy.
I know the sentence will need to be reformatted. But I am drenched in pride.
I turn to Brooke. “Great job telling us how you feel, Brooke. Really great job.” I hope that my words send a message to both of them. I stand with my girl.
Our visitor is undaunted.
“I just want to see that beautiful face,” she says. “Lift up for me.”
I am stymied by etiquette. By deference to our host. By generational difference. By convention.
Brooke is not.
She lifts her head as instructed. And growls.
Autism Speaks is willfully ignorant of the people they claim to serve.
We tell them that the way they talk about us hurts us. I started this site in 2009 to protest their video "I Am Autism." Because of Jess, I have talked directly with Autism Speaks president Liz Feld, who listened very nicely. We have told them it damages us when they tell people that we are a tragedy or a tsunami or a crisis. They pretend to care. People pretend they are changing.
They will not change.
They cannot change.
This is Suzanne Wright, writing about the Autism Speaks to Washington forum happening this week:
This week is the week America will fully wake up to the autism crisis.
If three million children in America one day went missing – what would we as a country do?
If three million children in America one morning fell gravely ill – what would we as a country do?
We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.
We’d leave no stone unturned.
Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.
We’ve let families split up, go broke and struggle through their days and years.
This is the same rhetoric that launched Autism Speaks with the hideous "Autism Every Day."
Autism Speaks is controlled by a person who does not know not to touch an autistic child's face. Who will not listen to an autistic child who tells her not to touch her.
And, honestly, that is all you need to know about Autism Speaks.
