White House Appointee Ari Ne’eman on the Power of Autistic Community

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Ari Ne'eman of ASAN. Photo by Aristide Economopoulos, used with permission.

Ari Ne'eman of ASAN. Photo by Aristide Economopoulos, used with permission.

Editor’s note: I’ve never been a fan of campaigns that propose to get people talking about important issues by telling them to shut up. (No “Day Without A Gay” in my name, thanks.) That’s why, when I saw a press release [PDF] a year ago from an organization promoting a social-media blackout for autism awareness called “Communication Shutdown,” it seemed like an awful idea. The goal of the event — touted by a roster of “celebs” including actor Steven Segal — was to give non-autistic people a taste of the frustration some people on the spectrum face in trying to communicate by convincing them to log off of all social networks for 24 hours (while downloading a $5 “charity app” that funneled money to the organization.) It seemed almost perverse to honor autistic people by shunning the very medium that has empowered many of them to find their own voices at last, after decades of being silenced behind the walls of institutions and well-meaning organizations that claim to speak for them.

Then I read an inspiring post from a young woman named Corina Becker calling for a counter-protest on November 1 that she called Autistics Speaking Day. She wrote: “What’s the tragedy? That people can’t speak? Or that too few are listening? Whether we’re verbal or nonverbal, does telling people to stay off social communication networks really create empathy for us? The Internet is how we find one another. It’s where many of us feel heard. It’s where many of us feel most comfortable.” I offered Becker this forum for a day, and I’m glad I did. Her essay “25 Things I Know as an Autistic Person” was honest and provocative. Yielding this space to someone on the spectrum each November 1 feels like a tradition worth maintaining.

This year, I’m honored to feature Ari Ne’eman, co-founder of the Autistic Self-Advocacy Network, and the first openly autistic White House appointee, nominated by President Obama in 2009 to sit on the National Council on Disability. Ne’eman — who is also one of the youngest presidential appointees in history at 23 — is one of the most passionate and articulate leaders of the neurodiversity movement, an emerging force for social justice that brings the empowering message of the disability-rights movement to those who think differently. From his seat on the Interagency Autism Coordinating Committee, which oversees policy initiatives within the Department of Health and Human Services, Ne’eman has been a powerful advocate for autistic people and their families, fighting for services and support, inclusive education, and public policy that will enable people on the spectrum to live and work in their own communities, while battling unethical research agendas and entrenched stereotypes of what autistic people can and can’t do.

I did the first major interview with Ne’eman on Wired.com after he took his seat on the NCD, and have followed his career as I write my book on autism and the neurodiversity movement. Ne’eman and I don’t always agree on everything, but I’ve often found myself mulling over things he says long after he says them. I’ve also watched him talk to autistic people and their families, to folks with other disabilities, and to student organizers and self-advocates across the country, and I’ve been consistently impressed with the depth of his knowledge, his compassion and empathy, and the earnestness of his commitment to civil rights for all. I’m grateful to him for speaking out today on the Public Library of Science.

Steve Silberman

Ari Ne'eman of ASAN. Photo by Aristide Economopoulos, used with permission.

Ari Ne'eman of ASAN. Photo by Aristide Economopoulos, used with permission.

Community Matters

by Ari Ne’eman

Community matters. One of the things I always appreciated about my first few weeks in college was the existence of the local Hillel — the Jewish student center active on my campus, and many hundreds of other campuses across the country. I was an out-of-state student going to a university where most of my classmates had grown up within no more than an hour’s drive of the campus. Having an immediate sense of community as a Jew was incredibly meaningful for me — and yet, I always felt a profound sense of regret that I didn’t have the same opportunities as an Autistic as I did as a Jew. Walking into the university disability services office was a far cry from the warmth of Shabbat dinner or outreach by campus Jewish organizations. Instead of being connected to others who could relate to my experiences as someone on the autism spectrum, I and other disabled students were usually greeted by a bored work-study student handing us a card upon which we could check one of a few “standard” accommodations — extended time, alternative print/braille, note-taking and a few others, crafted without thought to the needs of students like me. Anything else required a long wait and an uphill battle.

There are a lot of issues worth unpacking here — the low quality of support offered to disabled students in post-secondary education, the vast gap between programs focused around compliance and those focused around quality of life — but the one that I want to focus on today is the value of community. Being part of any minority group is always a challenging experience. Living in a world built for people who are not like you is alienating, whether it’s because of the way your brain works or because you don’t celebrate Christmas. In the disability world, we use concepts like the social model of disability to explain this experience. Service-provision and reasonable accommodations and any number of other things we fight to receive are intended to bridge the gap between the world as it is and the world as we’d like it to be. Yet, we still have so very far to go to create a more just society. The last few months have seen some heated discussions about privilege in both the autism community (that is, the community of non-Autistic parents and professionals with an interest in autism) and the Autistic community. I think one of the things that makes privilege such a hard topic to discuss with those who are, or would wish to be, our allies is that it continues to exist, even when we get the things we’re advocating for. In the best of all possible worlds we can create, we will still be expected to explain ourselves to others in ways that no neurotypical person would have to do. We will still frequently face assumptions and stereotypes that require us to work twice as hard for the same results.

So, what can we do when our best efforts to change the world we live in are simply not enough? What salvation exists for us, when our lives are still more difficult, even when we do get the supports and accommodations we want? These are vexing questions. Some people try and find the answer in the search for a “cure.” They believe that the best way to solve the problems facing Autistic people is make us appear as non-autistic as possible, or to prevent future generations of Autistic people from existing.

The first option bothers me deeply. When a child or adult is called “recovered,” they don’t change into a different person. All the things — good and bad — that we call autism don’t go away because you lose a word. Instead, that person no longer has language for what they experience. That person goes through the same struggles, the same difficulties, but lacks the context and the community to know how that it is okay for them to be who they are. Sometimes that prevents them from accessing needed help. Other times it just traps them in a place where they have to constantly look over their shoulder, worrying about who might notice them being just a little bit “off.” Either way, it isn’t an outcome we should wish upon anyone.

Not too long ago, a colleague commented that I should be proud for being so nearly “indistinguishable from my peers.” Only in the autism community would anyone consider that a compliment. Despite the good intentions behind the remark, I felt a profound sense of hate and disgust motivating it — not of me as an individual, but of the person I was growing up, and of the person I still am, hidden underneath layers of mannerisms and coping strategies and other social sleights of hand. Those kinds of statements define our worth as human beings by how well we do looking like people whom we’re not. No one should have to spend their life hiding who they are.

As for the path of prevention, I’ve never seen that as particularly realistic. Not only because I like my brain the way it is and am worried about the ethical consequences of breeding “better” human beings, but also because I know that if people like me didn’t exist, the stigma and prejudice that sometimes makes our lives difficult wouldn’t go away – it would just move along to another group. Disability has always been a fluid concept, and I don’t imagine for a moment that preventing the existence of the next generation of disabled people would or could eliminate the place we’re put in within the social hierarchy. Besides, I think we have better solutions available to us.

To me, the better option has always been filling the gap between what we need and what we can get from society with each other. As we work to make the world better, we can provide ourselves with a place where we feel safe and understood, even if we don’t yet feel that way in the broader society. Every time we speak up about what being Autistic means to us as opposed to those who speak on our behalf, we can empower other Autistic people to do the same thing. Every time one of us comes out of the closet in a place where people don’t expect people with our kind of brain to be, we carve out a little bit more cultural space that we can claim for our community. What if the next generation of Autistic people grew up with the idea of Autistic community and culture an ever-present factor in their lives? What if we took our individual experiences and turned them into a collective narrative, as so many other minority groups have done across history? What if we knew, that even when life was hard and the world at large didn’t understand, that we would always have the chance to connect with those of us who have gone through the same struggles? Whether it’s through creating resources by and for our community – like ASAN’s new Navigating College handbook – or just connecting with other autistic adults informally in social groups or online, I feel that Autistic community is and can be a revolutionary concept.

That is what Autistics Speaking Day means to me. For those of us who have spent our lives being discounted as voiceless or being told that our experiences don’t count, the act of speaking up matters. And while we should do it every day, this holiday gives us the chance to do it not only as individuals but as a community, to braid our individual narratives into a collective one. Most importantly, it sends a powerful message to any Autistic person who hears in the voices speaking up today an echo of their own lives: no matter where you are or what you’re going through, you aren’t alone.  Community matters.

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