I made this:
"I want to know why my brother has autism."
"I want my sister to stop telling people that I'm a public health crisis."
Autism Speaks put out a video yesterday. It looks different from what you may have seen them do in the past. For one thing, it prominently features autistic adults speaking for themselves.
Are people going to find plenty to take issue with? Yup. They always will. Autism is far too sticky and messy and God, it affects us all in so very many different ways – I can imagine almost nothing that will please everyone in one fell swoop. But is it a hell of a closer? Yup. Is change happening? It is.
The other night, I listened to Liz Feld, the President of Autism Speaks, speak to a room full of some 220 people. She talked about autistic young people transitioning to adulthood. She talked about transportation and housing and employment. She talked about bullying and respect. She talked about research as an avenue to make life better – to mitigate the challenges of those on the spectrum. She talked about returning money to the communities from which it comes – supporting services for autistic individuals and their families.
Speaking to her at the end of the evening, she said, “See, Jess? I listened.” I told her I’d heard it. That I’d heard my words reflected back to me.
She looked at my friends Judith and Jersey who were standing with us. “She taught me,” she said, “that our words matter.”
Miss Montana, Alexis Wineman, blogs for Autism Speaks about being diagnosed with autism at age 11 and finding success in high school:
Autistic? Great, another name for people to call me other than retarded. Whatever this autism thing was, it ruined my life before I had a chance to live it. But to my surprise things started to get better in high school. People started to back off and through programs like speech & drama and cross country I was able to make some great friends. Graduation became possible and I finished high school with high grades. When I told my parents that I wanted to compete in the Miss Montana program it was a complete shock to them. I grew up hating anything that resembled a pageant. I remember how I would watch the Miss America program when I was younger and seeing those beautiful, intelligent women who, no matter the outcome, had a great future ahead of them. I thought that I could never have a future worth looking forward to and I thought that the confidence and grace these women had was too out of my reach. Looking back, I realize how foolish I was. I have already done so many things I never thought I could do. I’ve run three miles without stopping, spoken in front of many people, qualified for the National Honor Society, and was able to graduate high school with an acceptance to college.
My friend Jennifer wants Autism Speaks to be better.
She does a lot of things to encourage this, and one of them is making the video above, about her wonderful son Charlie.
I'm not as confident as she is that Autism Speaks can get better.
But I like this video. And if Autism Speaks looked like this, it would be better for us all.
Jess at Diary of a Mom links Todd Akin's ignorant comments on "legitimate rape" and abortion to the way that neurotypical "deciders", especially those at Autism Speaks, routinely treat autistic people with no consideration or respect:
Yesterday, President Obama said that Akin’s comments “underscore why we shouldn’t have a bunch of politicians, the majority of whom are men, making health care decisions on behalf of women.”
And that was when it hit me.
Last week, I had a pretty deep conversation with Liz Feld, the President of Autism Speaks. We were talking about the words that we use. About how we discuss autism in the public forum. About how difficult it can be to create a balanced perception of such a broad spectrum. About how we need to fight for help for the disabling aspects of autism while steering clear of demonizing it in order to do that. About how difficult it can be to set research priorities for such a wide array of people.
We had gotten into some of the nitty-gritty. 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?”
And Jess gets the answer exactly right:
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.
GRASP publishes a letter from nine-year Autism Speaks volunteer Michele Montanez to new president Liz Feld on why it is important that the organization stop using the word "cure":
For many years, autistics themselves have been fighting to be heard. Their voices are getting louder and louder. We purport to speak for autistics as well as the parents that form our backbone. The vast majority of them, the ones that advocate for true acceptance in our world of autistics as they are instead of as close to neurotypical as we can therapy them into, are emphatically opposed to the word cure. We promote advocacy and acceptance, and yet when the very people we promote advocacy and acceptance define what that means for themselves, we continually ignore it. Ironic for an organization who’s tag line is “Autism Speaks. It’s time to listen.” We are not listening to the group who matters most in our mission. Our attempts to get autistic self advocates to the table to work with us, instead of vilifying us, will never work as long as we continue to overtly, persistently, and knowingly continue to be offensive.
Thanks to Michele for referencing this piece I wrote about why it bothers me that Autism Speaks-branded school supplies being sold at Walmart carry this message: "6% of the net proceeds will be donated to Autism Speaks, a non-profit organization dedicated to finding a cure for Autism."
Thanks to Amy Sequenzia for pointing out to me that she did.