Ari Daniel Ne'eman (/neɪəˈmɑːn/; born December 10, 1987) is an American disability rights activist and researcher who co-founded the Autistic Self Advocacy Network in 2006.[1] On December 16, 2009, President Barack Obama announced that 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 making 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] He currently serves as a consultant to the American Civil Liberties Union.[6] He is currently an Assistant Professor at the Department of Health Policy and Management of Harvard University.[7]
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.[9] He had to leave the Solomon Schechter Jewish day school around the fifth grade, which distressed him.[11] 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.[12]
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."[13]
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.[14]
Advocacy work
Founding and leading the Autistic Self Advocacy Network
After graduating high school, Ne'eman founded the Autistic Self Advocacy Network (ASAN), a national advocacy organization run by and for autistic adults and youth. In February 2006, he was appointed by the Governor of New JerseyJon 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.[15] 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."[16] 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.[16]
As ASAN President, Ne'eman continued his work against aversives, restraint, and seclusion in a variety of contexts, ranging from grassroots campaigns[17] to comment on specific regulatory proposals.[18] 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 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.[19]
Under his leadership, ASAN's work 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[20] and the organization's long-standing criticism of Autism Speaks.[21] 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 traditional disability rights priorities.[22] 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.[23]
On July 18, 2016, Ari Ne'eman announced that he would step down as president of the Autistic Self Advocacy Network, to be succeeded by Julia Bascom.[24] He subsequently joined the American Civil Liberties Union as a consultant on disability policy.[6] As of 2019[update], he is writing a book for Simon & Schuster on disability history in the United States.[25]
Other autistic advocacy
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.[9] He urges scientists researching the genetics of autism to be cautious of the ethical implications of their studies.
Ne'eman believes that social pleasantry should be eliminated as criteria for hiring and a good job evaluation.[26]
In 2010, President Barack Obama nominated Ne'eman to the National Council on Disability. Criticism of Ne'eman's view that society should not be curing autistic people may have been a factor in the hold on his confirmation.[9] 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.[27]
In addition to serving on the NCD, Ne'eman was 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.[28]
Ari Ne'eman led a campaign in Washington State to get a bus advertisement removed which advocated the "wiping out" of autism. Far more diplomatically, Arzu Forough of Washington Autism Alliance & Advocacy worries that the recent press coverage in Seattle could mislead the public about the nature of autism and obscure how serious the condition can be. Forough supported pulling the ad, and repeatedly calls for various autism groups to work together to advocate for support. But she says the points made by ASAN in many media over the last week are only part of the picture.
“A lot of people don’t understand what autism is, they don’t understand that it’s actually a disability,” says Forough, the Eastside mother of an autistic son. “Their perception is that these are individuals who may be quirky and they may just have some minor differences, and they really don’t understand the depth of support that some individuals with autism need.
“To that segment of the population, what played out with Seattle Children’s last week really won’t help them understand autism better.”[29]
Ne'eman has advised several Democratic presidential candidates on disability policy. In the 2016 election, he advised Hillary Clinton's campaign on autism and disability policy proposals.[32] In the 2020 election, his advice was acknowledged and credited by both Bernie Sanders and Elizabeth Warren in the development of their disability plans.[33][34]
ASAN was initially neutral on Kevin and Avonte's Law, which would have provided money to fight wandering behavior in autistic children, until a provision was introduced into the bill that would have allowed for tracking devices to be installed on people with disabilities that could be used for purposed other than locating them if they were lost. ASAN then opposed the bill, which failed to pass.[35] Later, a revised version of Kevin and Avonte's Law passed which did not include the language ASAN had objected to.[36]
During the 2020 COVID-19 pandemic, Ne'eman has advocated for the rights of people with disabilities to get access to necessary services, prescription drugs and lifesaving treatment when necessary. In an op-ed in The New York Times, he argued that ventilators and other scarce medical resources should not be denied on the basis of disability, provided that the care was not medically futile. Early in the pandemic, Ne'eman urged states to allow early refills on prescription drugs. He also articulated a series of recommendations to states to help ensure continuity of long-term care services for people with disabilities.[38][39][40]
In 2014, Ne'eman co-founded MySupport, a technology platform that enables people with disabilities to find and hire support workers. MySupport was acquired by RISE Services in April 2020.[41]
Views on autism
Multiple media sources have claimed that Ari Ne'eman sees autism as a difference as opposed to a disability. In response to those claims, Ne'eman has stated that he actually believes that autism is both a neurological difference and a disability, 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.[42] Proponents of a cure for autism, such as Cure Autism Now co-founder Jonathan Shestack, have criticized Ne'eman for his views on autism. Shestack has stated that Ne'eman does not understand the suffering those severely affected by “classic autism” and their parents endure.[9]
Personal life
Ne'eman married Rabbi Ruti Regan, a Conservative Jewish Rabbinical scholar and disability rights advocate, in July 2017.[43]
^ abcdeHarmon, Amy. "Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism", The New York Times, March 27, 2010. Accessed September 9, 2013. "Whether the hold is related to the criticism of Mr. Ne'eman (pronounced NAY-men) and what it might take to lift it is unclear.... Mr. Ne'eman, who grew up in East Brunswick, N.J., has said his condition caused him to be bullied in high school."
^Network, Autistic Self Advocacy. "Position Statements". Autistic Self Advocacy Network. Archived from the original on 2016-04-16. Retrieved 2021-01-16.
