Ari Ne’eman, First Autistic Presidential Appointee, on Living with Autism, Finding a Cure, and Neurodiversity

ari-neeman

Ari Ne’eman

Last December, President Obama appointed Ari Ne’eman to the National Council on Disability (NCD), a panel that advises the President and Congress on ways to reform health care, schools, support services, and employment policy to better the lives of people living with disabilities.

His nomination was controversial to many in the autism community, due to his criticism of organizations such as Autism Speaks, which he claims places too much focus on research to find a cause and a cure, rather than on ways to improve the lives of people who are living with autism in the world, today. Other groups, such as the Autism Society of America and the American Association of People with Disabilities, applauded his appointment.

Ne’eman is an advocate for neurodiversity, a civil rights movement for people with disabilities. He says,

“The neurodiversity movement takes the concepts of self-determination and equal legitimacy that we as a society have applied to differences of race, religion, gender, sexual orientation, and other disabilities, and applies them to the fact that people are born with different types of minds as well. Instead of asking, ‘How do other people think we should be?’ we’re asking, ‘What do we want for our own lives?”

Ne’eman dreams of a world where autism is accepted as simply another way of being, rather than as a disease that needs to be cured. Some parents and groups within the autism community have criticized him as being a “high-functioning” person who doesn’t understand the challenges that others, who are more severely affected, are living with. While he concedes that he is able to function in ways that many other with autism cannot, he prefers to focus on helping those in need get access to the services and supports that will help them live as fully as possible. He says,

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“It’s much more productive for us to focus on how we can improve people’s lives than to keep presenting people as pitiable burdens.”

Ne’eman hopes to use his position to help the hundreds of thousands of people across the country who are currently on waiting lists hoping for access to community services. The Community Choice Act would require states to pay for supports and services at home and in the community, rather than paying for institutional placements, which are actually more expensive.He criticizes therapies that focus on making an autistic person appear “normal,” and instead would like to see approaches that focus on increasing the quality of life for the individual.

While he’s grateful for the attention autism has received in the media over the past several years, he feels it is only a first step.

“People shouldn’t have to learn about autism from Temple Grandin, John Elder Robison, or Ari Ne’eman. People should learn about autism by virtue of the fact that there are autistic people in their schools, workplaces, and communities. We’ll know we’ve really made progress when having autistic people in your life seems totally unsurprising.”

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Copyright 2017 Autism Daily Newscast

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About Laurel Joss

Laurel Joss is a freelance writer with a Master’s Degree in Early Childhood Education. She worked as an RDI® Program Certified Consultant and has published articles in Autism Spectrum Quarterly and on her blog www.remediatingautism.blogspot.com. She is a mother to two children, one of whom is on the autism spectrum. You can also follow her on https://twitter.com/speaking_autism and https://www.facebook.com/speaking.autism.ca