inclusion in action

by marjorieingall on October 22, 2010

Here’s a terrific interview (by Steve Silberman in Wired) with Ari Ne’eman, the first autistic presidential appointee in history, as well as one of the youngest appointees ever. (He’s 22.)

The issues Ne’eman raises remind me of my concerns with initiatives like Make It Better. Ne’eman makes the point that people often speak for people with autism without listening to them. We need to hear the voices of the people we mean to advocate for. And unfortunately, the “autism community” is far more divided than the LGBT community, maybe even — chas v’challila! — as divided as the Jewish community!

Silberman writes:

[Ne’eman’s] nomination proved controversial, in part because some self-proclaimed allies of the autistic community think national dialogue on the subject should focus primarily on finding causes and cures so that autism can be prevented in future generations.

In March, the editor of an anti-vaccine website called The Age of Autism challenged Ne’eman’s ability to serve the needs of more profoundly impaired autistic people. “Do the highest functioning with the community,” wrote Kim Stagliano, “have a right to dictate the services and research that should be available for their less fortunate ‘peers?’ I don’t think so.”

Some of these online attacks escalated into threats. One anonymous emailer to a federal agency in Washington wrote that “assholes like Ari Ne’eman” should “have their tongues cut out” for suggesting that autistic people need respect, civil rights, and access to services more than they need pity and a cure. This conviction has made him a leader of the emerging neurodiversity movement, which Ne’eman sees as a natural outgrowth of the civil rights, women’s rights, and disability rights movements of the late 20th century.

Ne’eman criticizes organizations (like Autism Speaks) that focus only on causes and cures, at the expense of making life better for people with autism RIGHT NOW. He says:

Going back to the dark days of Bruno Bettelheim and “refrigerator mothers,” the focus of the conversation has been on placing the blame for autism, and on trying to make autistic people something we are not and never can be: normal. This focus on a cure has prevented us from actually helping people. There’s been a lot of progress in the disability rights movement over the past 20 years, but people on the spectrum haven’t benefited from it because those representing us at the national level have been focused on causes and cures.

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. That’s the goal of groups like ASAN, Autism Network International, and of the neurodiversity movement as a whole.

He goes on to discuss the “neurodiversity movement,” the problems with an ad that depicted autism as a criminal who has kidnapped the parent’s “real” child, portrayals of autism in books and TV shows (“now autism is considered an appropriate subject for ‘very special episodes'”) and how the Community Choice Act facing Congress would help people with disabilities more easily access services. He’s a great talker and the whole interview is totally worth your time. Read it!

You know, the divide between parents of autistic kids and adult activists with autism also reminds me of a story I did for Sassy long ago on the Deaf Rights movement. To these activists, Deafness (capitalize the D, just as you would with African-American) is a community and culture, with its own language (American Sign Language) and heroes and referents. And what “hearies” want for their Deaf kids is often very different from what Deaf people themselves value. The media love to do heartwarming stories about cochlear implants, which drive Deaf Rights activists nutballs. To them, putting electronics in a child’s head, in a surgery with attendant risks performed on someone too young to give informed consent, deprives the child of his culture. Spending time with teenage and 20something Deaf advocates was truly revelatory for me. (So was reading Leah Hager Cohen’s amazing book Train Go Sorry: Inside a Deaf World.) It may be very hard to listen to the beliefs and concerns of people with disabilities (especially young ones! because they’re dewy and clueless and we know better!) but too bad. We don’t get to discount their wishes when it comes to their own lives and bodies.

I love Ne’eman’s conclusion, about how we need a paradigm shift in the way we view autism. We’d still focus on helping people communicate, make friends, stop injurious behaviors. But we’d do so with a different attitude:

[T]he current bias in treatment — which measures progress by how non-autistic a person looks — would be taken away. Instead of trying to make autistic people normal, society should be asking us what we need to be happy.

Amen to that.

{ 2 comments… read them below or add one }

Robin Aronson October 24, 2010 at 2:12 pm

That IS terrific! thanks for the link.

Ellen October 25, 2010 at 7:50 pm

I so love what Ne’eman has to say. As I’ve been immersed in special-needs social media, and exposed to more autism blogs/sites, I have similarly felt the focus has been too much on a “cure” (and the cause) and not enough on quality of life. There’s no comparison to the world of cerebral palsy. I’ve minded that it gets barely any attention compared to the kind autism gets, but cp is not at all political and much of the focus is on quality of life, and for that I am thankful.

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