One of my favorite one-person blogs, Angry Black Bitch, talks a lot about the author's brother—a 40-year-old man with autism, lost in a system where services and funding are focused on curing autism or treating very young children. ABB writes: "So, be aware...that my brother's life isn't wretched or sad. My sister and I work very hard to make sure that it isn't. Bill is not a cure that didn't happen or a diagnosis...he's a human being, who gets up every day and goes about his bitness."
Ari Ne'eman is poised to be a champion for people like Bill. This 22-year-old recently became the youngest person, and the first openly autistic person, ever given a presidential appointment—to the National Council on Disability, which advises Congress on the changes that need to happen to make sure all Americans can live full lives and be equal members of society.
Today on Wired, Steve Silberman has an interview with Ne'eman, centered around the new appointee's perspective on what it means to be autistic and what it means to help people with autism. To Ne'eman, much of the money donated and attention given starts with the assumption that autistic people are just normal people who've been possessed by a disorder. The current goal seems to be about finding a cause and a cure, rather than supporting autistic people and setting up the program that allow them to make their way in society on their own terms. Ne'eman wants to change that, and his position has already made him controversial. He says:
We need to stop making autism advocacy about trying to create a world where there aren't any autistic people, and start building one in which autistic people have the rights and support they deserve.
Wired.com: What are the goals of the neurodiversity movement?
The neurodiversity movement takes the concepts of self-determination and equal legitimacy that we as a society have applied to differences of race, religion, gender, sexual orientation, and other disabilities, and applies them to the fact that people are born with different types of minds as well. Instead of asking, "How do other people think we should be?" we're asking, "What do we want for our own lives?"
The goals of the neurodiversity movement coincide with the goals of the broader disability and civil rights movements. We have a lot of solidarity between us. When a hold was put on my nomination last spring, I was grateful to have the support of groups like the American Association of People with Disabilities and the Leadership Conference on Civil and Human Rights. What we're all trying to do is in the grand historical tradition of people fighting to achieve equal opportunity and control their own destiny.
When the Child Study Center at New York University launched its "ransom notes" ad campaign in 2007—which defamed autistic people by depicting autism as a criminal who kidnapped your "real" child -- the whole disability community fought alongside us. I think it was Ben Franklin who said, "We must all hang together or we'll surely hang separately." Right now, we're trying to put that into practice in the disability community with coalitions like the Justice for All Action Network, a collaboration of the country's leading self-advocacy groups.
Image: Paul Morse/Wired.com