Ari Ne'eman

Ari Ne'eman (pronounced "ne-eh-man"; born December 10, 1987) is an American autism rights activist who co-founded the Autistic Self Advocacy Network in 2006.^[1] On December 16, 2009, President Barack Obama announced that Ari Ne'eman would be appointed to the National Council on Disability.^[2] After an anonymous hold was lifted, Ne'eman was unanimously confirmed by the United States Senate to serve on the Council on June 22, 2010.^[3] He chaired the Council's Policy & Program Evaluation Committee. Ne'eman has a diagnosis of Asperger syndrome, which made him the first autistic person to serve on the council.^[4] In 2015, Ne'eman left the National Council on Disability at the end of his second term.^[5]

Early life

Ne'eman grew up in East Brunswick, New Jersey, where he attended East Brunswick High School.^[6][7] He displayed autistic traits at an early age, and eventually developed an interest in public policy. He engages in stimming, such as pacing and hand-flapping.^[1] He also has sensory processing issues that affect his reactions to certain sounds and textures.

Early in childhood, Ne'eman was verbally advanced and socially isolated. Like many children on the autism spectrum, he was bullied, and in his early teens he struggled with anxiety and would engage in self-harm by picking his skin.^[6] For a period in high school, Ne'eman went to a segregated special education school. There, he was frustrated by the segregated school because he felt it was a "day care" that focused on "normalizing" disabled students instead of challenging them academically. He said that he and his fellow students "were being written off because of what society expects of people with disabilities." Using his advocacy skills, Ne'eman was eventually able to return to a mainstream school.^[8]

This experience had a strong effect on Ne'eman's view of the world. He has said that although he himself was successful at returning to a mainstream school, "What is, I think, most frightening to me is that for many students out there that kind of message is absorbed—the idea that they are inferior is absorbed, and that can be very damaging because it really puts a limit on people's potential." ^[9]

Upon graduating high school, he founded the Autistic Self Advocacy Network. He then attended the University of Maryland, Baltimore County where he became a member of Alpha Epsilon Pi and graduated with a bachelor's degree in Political Science as part of the Sondheim Public Affairs Scholars Program.^[10]

Advocacy work

After graduating high school, Ne'eman founded the Autistic Self Advocacy Network, a national advocacy organization run by and for autistic adults and youth. In February 2006, he had been appointed by the Governor of New Jersey Jon Corzine to the New Jersey Special Education Review Commission, a body tasked with developing recommendations on the educational needs of students with disabilities in the State of New Jersey.^[11] There, he authored a minority report to the Commission's main document expressing concern over the lack of substantive recommendations regarding aversives, restraint, and seclusion. In his letter to commission chair Joyce Powell, the head of the New Jersey Education Association, he noted, "It would have been our preference to find a solution in the main document to this issue. However, owing to numerous compromise proposals having been rejected, including one as basic as requiring parental consent prior to the utilization of these techniques, we feel it incumbent upon us to file a minority opinion."^[12] In the minority report, he and three other commission members argued for a total ban on aversives, restricting restraint to emergency situations only and a variety of other policy recommendations applying to public schools and other entities receiving public funds.^[12]

As ASAN President, Ne'eman continued his work against aversives, restraint, and seclusion in a variety of contexts, ranging from grassroots campaigns^[13] to comment on specific regulatory proposals.^[14] In late 2007, Ne'eman and ASAN began to focus their advocacy efforts against new targets. On November 30, Ne'eman gave public comment to the Inter-Agency Autism Coordinating Committee, a body within the Department of Health and Human Services that he would later join two years later. In his remarks, Ne'eman called for a re-focusing of the autism research agenda away from the priorities of causation and cure, urged increased representation for Autistic self-advocates on the Committee and condemned Autism Speaks as "morally complicit" in recent murders of autistic children, due to their Autism Every Day fundraising video.^[15]

ASAN opposed Kevin and Avonte’s Law, which would have provided money to fight wandering behavior in autistic children. After congress failed to pass Kevin and Avonte’s Law, Ari Ne'eman wrote an editorial claiming that wandering behavior among autistics was caused by physical and sexual abuse. In response, Amy S.F. Lutz wrote that according to the study that Ne'eman cited as the source for his argument, most autistic children that wander display positive emotions.^[16]

Under his leadership, ASAN's work has focused on both public policy priorities and social and cultural change. Ne'eman attracted significant public attention for ASAN's successful campaign against the New York University Child Study Center's Ransom Notes campaign ^[17] and the organization's long-standing criticism of Autism Speaks.^[18] Ne'eman and ASAN have also been frequent advocates on issues like expanding access to employment supports for autistic adults, fostering greater educational inclusion for youth on the autism spectrum, strengthening rights protection laws across the lifespan and other more tradition disability rights priorities.^[19] After the passage of the ADA Amendments Act of 2008, Ne'eman was one of a number of advocates specifically recognized by then House Majority leader Steny Hoyer in the Congressional Record.^[20]

On July 18, 2016, Ari Ne'eman announced that he would resign as president of the Autistic Self-Advocacy Network, to be replaced by Julia Bascom.^[21]

Autism self-advocacy

Ari Ne'eman believes that autism is a neurological difference and not a disease that should be cured. He is against what he sees as the stigmatization of autism in the media and views autism self-advocacy as a civil rights issue.

Ne'eman believes that social pleasantry should be eliminated as criteria for hiring and a good job evaluation.^[22]

Ne'eman believes that society should focus on developing supports for autistics rather than searching for a cure. He believes a cure for autism will not come anytime soon and genetic insight gained on autism may be used to develop prenatal tests for the condition that will result in the premature termination of autistic fetuses.^[6] He urges scientists researching the genetics of autism to be cautious of the ethical implications of their studies.

Proponents of a cure for autism, such as Cure Autism Now co-founder Jonathan Shestack, have criticized Ne'eman for this position. Shestack has stated that Ari Ne'eman doesn't understand the suffering those severely affected by classic autism and their parents endure. Criticism of Ne'eman's views may have been a factor in the hold on his confirmation.^[6] However, Daniel Pfeiffer, then the White House Communications Director, accused Republican senators of intentionally blocking many of President Obama's nominees; in May 2010, there were 96 people waiting to be confirmed to administration posts.^[23] His eventual unanimous confirmation supports this theory.

In addition to being on the NCD, Ne'eman is a public member of the Interagency Autism Coordinating Committee and a board member of TASH. He had been Vice Chair of the New Jersey Adults with Autism Task Force, and served on the New Jersey Special Education Review Committee.^[24]

He won the $100,000 Ruderman prize in 2014.^[25][26]

References

External links

• Sometimes a Lion
• National Council on Disability - NCD Council Members
• The Autistic Self Advocacy Network site