Friday, August 19, 2011

Ari Ne'eman at the Syracuse University Neurodiversity Symposium, Part 1

Two weeks ago, Syracuse University hosted its first regional Neurodiversity Sypmosium, with Ari Ne'eman as the keynote speaker. Mr. Ne'eman is President and co-founder of the Autistic Self-Advocacy Network, as well as a presidential appointee to the National Council on Disability. He spoke both fiercely and wittily about both neurodiversity and self-advocacy in the past, present, and future.

TPGA was given an audio copy of Mr. Ne'eman's talk by neurodiversity-immersed journalist Steve Silberman, who said it needed to be shared. This will be the first of three posts covering the talk; this excerpt focuses on Mr. Ne'eman's coverage of the history of the neurodiversity, self-advocacy, and disability rights movements as civil rights movements, as well as "...the peculiar concept that people with autism could be a minority group like any other."

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I see this symposium not only as the beginning of a process that's being going on some time -- the infiltration of the neurodiversity movement into academia, and also as the continuation of the recognition of neurodiversity and of Autistic self-advocacy and of this broad stroke of activity that we can refer to as moving forward the frontiers of the disability rights movement, as things that are being accepted into the mainstream of American life.

And that is something that people have been very resistant to; there are people who look at the neurodiversity movement, and think that we are trying to advance some radical or strange concept by saying that people with autism and people with other disabilities should not be considered second-rate minority groups, that we should be considered equal citizens of society, that the focus of autism advocacy should be to try and create a word that is better for Autistic people, as opposed to creating a world that has no Autistic people. There are people who think that that is a novel and unique idea, and they don't like novel and unique ideas. But by moving forward on these kinds of events, we send the message that this is not something that's happening on the fringe. This is something that's happening over the course of our society, and that is not going to go away.

In keeping with that, I think one of the things that always jumps out at me at these kinds of events is a sense of history. And I believe that history speaks to us, and I mean this in a number of senses. First, I want to acknowledge the history from which the neurodiversity movement springs, if not from the fact that Jim Sinclair [who also presented at the symposium] wrote "Don't Mourn for Us" when I was five years old, I certainly would not have gotten involved in the neurodiversity movement or the Autistic self-advocacy movement, and I think the same can be said of many of the people who are involved with it today. So some recognition of the history of our own movement is important. But equally so, it's essential that we recognize that neurodiversity is an outgrowth of disability rights, and disability rights is an outgrowth of the civil rights movement.

I often think of an anecdote that a friend told me -- she's a major midwestern researcher on disability -- and when she joined the faculty, she heard about something that occurred 20 years before: In the 1940s or 1950s, this university decided to take the novel step of hiring female faculty members in the hard sciences. It was a novel idea that a woman could do chemistry and physics and things that involved the mind. And there were opponents to this controversial new plan, new policy. And one of the issues that emerged was that the science faculty building had no women's restrooms. Because why would a science faculty building need women's restrooms? And immediately, when the opponents of this policy realized they would have to pay money to retrofit these restrooms, they started talking about how misguided the entire policy was, because look how expensive integration is.

Now, today, when we build a building, we generally remember that it should include both men's and women's restrooms. And we're starting to remember that it should be accessible for people with disabilities. We haven't gotten all the way there, even on the issues of physical architecture. But when we move forward the conversation to discussions around schools, or to discussions around curriculum, or discussions around events, or any number of other things, that component of access -- that component of thinking the way to do it "right" from the beginning, and the cost of doing it right from the beginning, is accessible and inclusive -- is often forgotten.

This is something that is not new in the neurological disability world. We often talk about autism as the main area where the neurodiversity movement is growing, and playing out its perspectives, goals, and objectives; but it's really much broader than that, and I'm very pleased that we have here today a number of people from other disability communities who see the neurodiversity construct as something that's relevant to them. This is something that's frankly not novel to the neurodiversity movement. There have been people who have been fighting over what the proper objective for disability advocacy should be, all the way back to not just the last century -- which is not that long ago -- but the century before that. If you go back to the 1880, it was the year in which the very first self-advocacy group was formed: the National Association of the Deaf. And it was formed for a variety of reasons, but one of them, and one of the reasons it grew rather quickly after that, was a growing concern about the American eugenics movement.

How many of you have heard of Alexander Graham Bell? Bell was a very strong supporter of eugenics. A quote:
"Those who believe as I do, that the production of a defective race of human beings would be a great calamity to the world, will examine carefully the causes that lead to the intermarriage of the Deaf, with the objective of applying a remedy."
Going all the way back to that early period in American disability history, there were those who defined their ideas about what a country should be striving for about disability not as greater employment, greater inclusion, greater quality of life, but a world that only had people within it that were deemed as appropriate and acceptable to their modes of thinking. Now this was something that was not limited to the Deaf community and the issues that emerged there. We often talk about disability history and we think about the Deaf because the Deaf were organized long before other groups were organized. But in the 1920s and '30s as the Great Depression roared on, and in the period of the New Deal, there was also efforts for disabled people to organize on our own behalf, to try to secure equal rights and recognition -- that we are not just a health category, but a minority group like any other.

In the late 1930s, the New York League of the Physically Handicapped came together to stage a sit in of the Works Progress Administration Office in response to the fact that the New Deal was doing a lot of things to offer Americans jobs, but nothing to offer disabled Americans jobs. And what I find interesting about this is that this is a precursor to modern efforts by ADAPT and other disability rights groups to try and see disability included within progressive policy making efforts. And that's a challenge that persists to this very day.

If you go forward another decade, the National Federation of the Blind was formed by Jacobus ten Broek, a blind law professor, who stated something that I think is still very applicable to this day:
"There are forces abroad in the land who in their disregard of the organized blind view consumers not as individuals to be served, but as defective mechanisms to be services." 
And once again, this is something that we continue to see today in the approach of many parts of disability policy platform and service provisions that view people with disabilities as very effective ways of getting large Medicaid reimbursements, for example, or of getting access to a service provider industry -- but does not view disabled people, does not view us as people with our own thoughts, aspirations, and dreams. And too many who make their business disability do not define us in any terms other than how they interact with us -- in medical contexts, in service provision contexts.

You can view the full talk in the webcast of Mr. Ne'eman's keynote.