You Should Know… Ari Ne’eman

Photo by Rina Ne’eman

Silver Spring resident Ari Ne’eman, 29, has spent more than a decade working on disability rights issues. Ne’eman grew up in East Brunswick, N.J., and was diagnosed with Asperger Syndrome at age 12. After graduating high school he founded the nonprofit Autistic Self-Advocacy Network in 2006, and three years later was appointed by President Barack Obama to the National Council on Disability. Today he runs a company aimed at providing states with technology that helps expand disability and aging services. He is also a consultant on disability policy for the American Civil Liberties Union and other groups.

What was your Jewish upbringing?
I grew up in Conservative Judaism. I’m the child of two Israelis, so of course I’m very connected to that part of the Jewish community. Up until around fifth grade I went to a Jewish day school and it was around then or a little bit before then that I had been diagnosed on the autism spectrum. After that I had to leave [the Jewish day school] because they were not very welcoming or accommodating to students with disabilities. I went to public school for a number of years. I went to a segregated special education school for about two years, and I returned to my local neighborhood school after that.

Which educational environments were the best for you?
I found, and I think the vast majority of people find, that inclusive environments in a general education classroom tend to be better. Certainly it’s what we know from the research and data and it’s also consistent with my own experience. One of the problems that we see is that in segregated contexts there tend to be lower expectations and less academic instruction for students with disabilities, and that was fairly consistent with my own experiences in the school system.

What was the genesis for the Autistic Self Advocacy Network?
There was a growing level of public attention to autism but very little attention to the voices of autistic people. So we had a profound frustration in that regard, that at a time when there was more media coverage, more research funding, there was virtually no acknowledgement of the voices of autistic people.

How were you selected for the National Council on Disabilities?
I was active in the ’08 Obama campaign on disability issues, like a lot of other people in the disability community were. During the five years I was on NCD I worked mostly on issues associated with the Medicaid program and working to improve home- and community-based services for people with disabilities. I also worked on addressing discrimination against parents with disabilities. It’s a widespread problem that parents with disabilities are often discriminated against by the family law system and child welfare agencies, and as a result of work we did on the council a number of states have passed legislation protecting the rights of parents with disabilities.

One of the big issues we worked on is trying to encourage, and we’ve made a lot of progress in this regard, a transition away from sheltered workshops — segregated work centers that often pay disabled people less than the minimum wage — and instead supporting people with disabilities to have access to the same kinds of integrated jobs and workplaces in the community.

Is it actually legal for the disabled to be paid below minimum wage?
Regrettably it is. In both my years at ASAN and my years at NCD, we worked to try and stop it. Right now there are over 200,000 people with disabilities being paid less than minimum wage because of a provision in the Fair Labor Standards Act called 14c that allows certain types of employers to pay sub minimum wage to disabled people.

What is one problem facing the Jewish community that you see?
One problem that we know is that there’s a lesser set of rights that typically apply to private schools, and that’s [Americans for Disability Act] rights: the right to get accommodations in the form of a ramp or stairs so that you can enter the building if you’re a wheelchair user, sometimes some extended time on testing. The right of nondiscrimination — the school cannot say because you have that diagnosis we’re just not going to accept them, even if it’s a private school.

Religious schools have an exemption to the ADA. And so a big problem in Jewish communal life right now is that day schools and Jewish summer camps are not subject to disability and nondiscrimination law. And there’s a big problem with them not complying with the standards for inclusion and accessibility that are legally expected in a secular setting. I would say at least in Jewish day schools and summer camps the Jewish community lags behind the secular community in expectations of disability and nondiscrimination.

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Comments

  1. Nancy Shapanka says

    Great job. I have several family members on the autism spectrum. Aspergers Syndrome was misdiagnosed at the time, but as a family we worked to help them to fully realise their potential. Thank you for your work. If I can be of any help, please contact me. Sincerely. Nancy

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