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

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

  1. Pingback: Unschooled « Blue Dog

  2. Douglas says:

    Nice U. of Montreal study released yesterday that kind of relates to the above ideas:
    “Recent data and my own personal experience suggest it’s time to start thinking of autism as an advantage in some spheres, not a cross to bear”…
    http://www.sciencedaily.com/releases/2011/11/111102161045.htm

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  3. Pingback: On autism, disability, and community

  4. Rachel says:

    It’s interesting — and a bit worrisome — that Ari distinguishes between the membership of the autism community (non-autistic parents and professionals) and the Autistic community (autistics). As a woman with autism, I consider myself a member of both, and much of the reason that I’ve been able to build bridges with parents is because I feel a sense of belonging in the autism community. It’s where I go to have an influence on parents and professionals and to create a space in which we can all co-exist. A lot of parents feel utterly unwelcome in Autistic community, and while there are plenty of places in the autism community in which I feel unwelcome too, I still go there because it’s where parents hang out. Bridge-building, I think, is critical for informing the ways in which parents advocate for their children before the children are ready to do so for themselves.

    One of the things that’s been on my mind for some time about the rift between parents and autistics is that so much of it seems to be driven by generational conflict — young adults trying to break away from the paradigm of their families, and parents of younger children having difficulty embracing the idea that their now-dependent children may grow up and move on. To be honest, as an older autistic, I’m getting very weary of the generational conflict driving the issues, because it leaves out a whole lot of us who are older than either party. Many of us were not visible as autistics when we were younger, and I sometimes feel as though we are still invisible when it comes to what drives Autistic community. Groups like ASAN do good work when it comes to looking at autism over the lifespan, but when so much of the energy goes to college/employment issues, and to the where-do-parents-belong-in-the-equation issues, and not to the challenges of having autism at 50, 60, and 70, we older folk can feel very out of sync. It’s an extension of the primacy of youth in our culture, and I think it’s something for people in the Autistic community to look at.

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  5. Pingback: Autistic Disorder Info & Resources » Blog Archive » White House Appointee Ari Ne’eman on the Power of Autistic Community – PLoS Blogs (blog)

  6. Nathan Young says:

    I have autism. The reason I say ASAN does not represent my views and those who do not choose to associate is becuase of their approaches. It’s not becuase everything they stand for is wrong it’s becuase they alienate really good ideas with very bad approaches. Using abortion politics to make demands toward tax-payers for services estranges the needs of real people and estranging compassion as pity in protests signs is just wrong. Caring people are called Nazi’s, their intents manipulated as if they meant harm and I just cannot ethically not speak against the propaganda because I think it’s wrong to warp others intention and everyone should be treated fairly. I am one advocate and I’ve spoken to hundreds of others about my concerns with ASAN in their approaches they have used to not only gain attention with political manipulation but bully out the voices who are more so polarized. Everyone deserves respect and when disagreements happen I believe there should be a diverse conversation going on and not just those who politically bully the most.

    Proudly doing my own thing independently which is the nature of “self” advocacy.

    Sincerely,

    Nathan Young

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    • Nancy says:

      Awesome comment Nathan. I’m glad you express yourself and I think you speak for many!

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  7. Matt Carey says:

    Zoe,

    I’m not objecting to the post. I am pointing out that

    Perhaps I only focussed on a portion of the article, but it does go beyond just an autistic community for yourselves. The article discusses making a more just society. It discusses privelidge. How do we work towards that goal? Who works towards that goal? Who represents thise who are Not representig themselves?

    Also,, how do we work towards that goal If “autistic community” is defined as a group that doesn’t include children? Is my kid not autistic or just not a part of the community? Socially, my kid has as little interest in participating in the adult autistic community as that community has of including my kid. So i consider that point irrelevant. But politically? My kid has a right to be represented. Am I, my kid’s representative, to be excluded because I am not autistic? That excludes my kid. That makes the “community” incomplete.

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    • I think you’re the one who might not understand here. No community of adults, socially, will include children on the level you seem to expect. They’re kids. What would you expect? At the same time, children are most certainly represented politically, and the issues that surround what autistic children ACTUALLY need, including educating parents and so-called “professionals” with no qualifications other than some piece of sheepskin and an ego. Yet somehow, autistics are expected to mysteriously treat children like adults in the political world. That doesn’t happen in ANY community, ever.

      However, there is an emerging youth empowerment movement that has been gaining political ground, primarily from the ages of 13-29, embodied by various organizations that initially spawned from the family movement and became their own entity with concrete and solid objectives. Additionally, you don’t know who’s involved with groups like ASAN, other than those like Ari who stand out in the spotlight. Many of them (I no longer affiliate myself with ASAN, though I am on excellent terms with them) rely on AAC, or would be considered “low-functioning” by half-wits compelled to slap one-dimensional labels on a three-dimensional world. You’d never know that, because you choose to condemn rather than converse.

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      • Steve Silberman says:

        Marc, if Matt chose to condemn rather than converse, he wouldn’t have posted in a comment thread and then proceeded to converse. Matt’s a very caring, open-minded, and respectful guy, even if you don’t agree with him.

        I’m not going to say too much here, and Ari is not going to participate in this thread at all, a decision I understand. But I do think it’s important to respect the desire of autistic people to form their own culture, outside of neurotypically-determined culture. It’s not a perfect metaphor by any means, but in the ’70s, it was very important for gay people to form their own “separatist” space, even actively excluding straight people, so they could discover who they were and what gay community felt like without having straight people around.

        Like autistics, gays had been medicalized, subjected to horrific “treatments” (even by Ivar Lovaas himself, father of ABA), defined consistently as “sick,” stereotyped, bullied, and subjected to all manner of societally-sanctioned violence. I don’t blame gays at that historical moment for wanting to get off by themselves for a while and build places for themselves where they could find the leverage to become a force for social change. That’s precisely what happened. I haven’t even heard the phrase “gay separatist” in like 20 years, but it was a necessary phase to fully develop, articulate, and experience “gay pride.”

        Obviously, autism is profoundly different in many ways, not least of which is that some autistic people would be unable to actively participate in building autistic community. But I don’t think we’ve even begun to know where to draw that line, since it wasn’t long ago that the same brilliant, articulate, even visionary autistic people who use AAC devices to speak were written off as “non-verbal” and probably “retarded” (a word I would only use in scare quotes, because it’s hate speech.) I saw some kids at Autreat a couple of years ago who were non-verbal, some who didn’t even use AAC while I was there, but who were clearly enjoying being around other autistic people. The least dangerous assumption is that all autistic people should be offered the chance to participate in self-advocacy in whatever ways they can. I was surprised by one non-autistic woman I met at a conference with a severe intellectual disability who turned out to be a passionate and industrious self-advocate. She had spent her youth in institutions, being abused, raped, and every other horror of which humankind is capable. I doubt most neurotypical people meeting her would have judged her capable of advocating for herself, much less others. Yet she was, and she was an inspiration. It’s not for others to decide, at least once a person grows into adulthood.

        In other words, I think it’s possible for different, distinct groups with distinct agendas to eventually unite under the banner of neurodiversity — social justice for everyone. But it may not be the time yet for that, or at least not in every case. I think the desire of some autistic people to create a “separate” autistic culture must be honored at a respectful distance by NTs. It’s not the time for NT parents to rush into every situation like that and say, “But what about me? What about my kid and my feelings about him? Can’t I be a part of this too?” — though I think many parents who would say that have the best of intentions.

        In the end, I’d like to see many different groups working together strategically to make the world a better place for people on the spectrum. Those alliances are beginning to happen. But they won’t happen if those who are trying to build exclusively autistic spaces are constantly challenged and pestered by non-autistic people, even those with good intentions.

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      • Matt Carey says:

        Marc,

        first, let me apologize for making such a big comment, first off the bat in this discussion. It isn’t really in keeping with ASDay. Also, to be clear, in my experience Ari does work as an advocate for the wide range of the autism spectrum. His work on the IACC gets the most prominence, but I find that his work on the NCD to be highly valuable.

        My effort here is not to condemn, but to open up the conversation in another direction. I realized when I wrote the above that it would likely be misinterpreted. The conversation for so long has been dominated by parent activists whose methods have been harmful to the people they were supposedly allied with that it was a natural reaction.

        That said,

        “I think you’re the one who might not understand here. No community of adults, socially, will include children on the level you seem to expect. ”

        Just to be clear: I don’t expect that social interaction with adult autistics, either for myself or my child. What I do expect is that the autistic community will include my child’s voice in political/advocacy efforts. What I need to do is find out how to make that happen.

        I think the time is now to really move beyond the era of parent-dominated autism advocacy. For example: ASAN is five years old. Autistic self advocates within and without ASAN are more prominent than before. The question is not whether autistics should be leaders in the autistic and autism communities, the question is how parents should integrate into that world. This is the key question I’m posing. Personally, how do I make sure that my child’s voice is a part of the mix? That child is a minority within a minority, for multiple reasons. Just as autistics should not have their voices lost in greater society, kids like mine should not have their voices lost.

        “Yet somehow, autistics are expected to mysteriously treat children like adults in the political world.”

        I think the above exemplifies the misunderstanding I think we are having rather clearly. I don’t think that anyone should treat children like adults in the political world. I do think that everyone needs to recognize that children do have rights within the political world. Autistic children even more than most. I’d like to see the autistic community include that concept in advocacy. Just as I strongly believe that non-autistic parents need to strongly support adults in their advocacy, a stance which I have taken.

        For now, I have the right and the responsibility to be that child’s representative. But I live for the day my kid says, “shut up, dad. I’ll take it from here.” I also have to prepare myself for the possibility that doesn’t happen. What then? How do I insure that voice is still heard?

        That seriously is a question, not a statement hidden as a question. I post these questions here and now because I am at a place where I need to start answering them, and this is likely a place where this can move forward as a conversation. As Ari mentions above, conversations on these issues have been heated. We don’t need the “heated” part, but we do need the conversation part. I need the conversation part.

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  8. Matt Carey says:

    It is, or should be, a community. It must be a community that encompasses everyone. This leaves us with the tricky question: how to incorporate those who, either because of age or disability (or even just desire), are not self-advocates? Or, as I’ll discuss below, are not obviously self advocates?

    I need allies for my child. I am that child’s representative. I have not only the right, but the responsibility to be that advocate. Very likely, my child will always need a representative. Not to determine what should be advocated for, but to interpret and stand for the needs and rights of that adult.

    …we will still be expected to explain ourselves to others in ways that no neurotypical person would have to do.

    In my experience, parents also find themselves having to explain themselves to autistics in ways that we would not have to with a neurotypical person. For example, I find myself having to remind people exactly what I have said above: it is not only my right, but my responsibility to advocate for my child. The difference for a disabled child is that this responsibility will likely endure into adulthood, and I need to prepare for that possibility.

    I believe there is a fear amongst some parents that a community of primarily self-advocates will disempower them (the parents). That’s an easy stereotype to make, though. There is also the fear that a primarily self-advocate community will disempower their children, now and into adulthood. That those children, be they minors or adults, who are not self-advocates will be left effectively voiceless in a community built around the goals and needs of a different segment of the community. It is a valid concern, and one which should not be brushed aside with the stereotype.

    If my child needs my advocacy into adulthood, again that is my responsibility. But there is a difference between advocate and caregiver. They are not one in the same. When my (then adult) child makes needs or wants known, I will act as the advocate. In this case, I will be acting as the conduit of that child’s self-advocacy. Just because I am the face presented in that advocacy doesn’t mean that my child is not a self-advocate. No more than if I hire an attorney for some project, I am no longer advocating for my self.

    Yes, this should be a community. But when it comes to advocating for a better world for the community and its members, it can neither be a community entirely of representatives or of self-advocates. If it is to be a true community, it must encompass both.

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    • Matt Carey says:

      “The difference for a disabled child is that this responsibility will likely endure into adulthood, and I need to prepare for that possibility.”

      I should have written: “The difference for *my* disabled child is that this responsibility will likely endure into adulthood, and I need to prepare for that possibility.” Certainly the statement above does not apply to all disabled children.

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    • Zoe says:

      This post is about the need for Autistic people to create our own community, amongst ourselves. That means creating Autistic organizations and spaces that are Autistic-controlled, not dominated by neurotypical people. Those kind of communities don’t have to include neurotypical people, just as queer social spaces and organizations aren’t required to include straight people, just as women’s organizations and women’s spaces don’t have to include men. I kind of don’t understand what you’re objecting to in the post. Are you saying that whenever Autistic people congregate — either politically or socially — to build community, there have to be a lot of neurotypical people there?

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      • Sunshine says:

        “I kind of don’t understand what you’re objecting to in the post. Are you saying that whenever Autistic people congregate — either politically or socially — to build community, there have to be a lot of neurotypical people there?”

        No. He has yet to object to anything and has sincerely asked autistic community organizations and leaders how they plan on representing his son, who is by default a member of the autistic community, on the account of being autistic. He is concerned that excluding ALL non-autistic individuals from autistic community efforts would mean excluding the very proxies that may serve to help non-verbal minors participate in their own community.

        The exclusionary approach is bunk. Separatism is vile discrimination. And it is disingenuous to claim that this is simply about a minority group “congregating.” ASAN has been misrepresented by its leaders as THE autistic community. If you want to be THE autistic community, you have to let autistic individuals participate fully. What is it that you object to, here? Are you offended by the very suggestion that an autistic minor unable to easily participate in this discussion should be part of the discussion? Do you find the autistic minor’s father’s sincere attempt to figure out how to best involve his son in such discussions offensive? Nothing he said suggested that he or any other non-autistic individuals should dominate the conversation. He rightly assumed that you would want to include his son is the community you and his son share. Why does that threaten you?

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