Ari Ne'eman

Ari Daniel Ne'eman (/neɪəˈmɑːn/; born December 10, 1987) is an American disability rights activist 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. 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] He currently serves as a consultant to the American Civil Liberties Union.[6] As of 2019, he also is a Ph.D. candidate in Health Policy at Harvard University.[7]

Ari Ne'eman
Born (1987-12-10) December 10, 1987
East Brunswick, New Jersey, United States
Autism rights movement
People

Early life

Ne'eman was born to American-Israeli and Israeli parents and raised in Conservative Judaism.[8] Ne'eman grew up in East Brunswick, New Jersey, where he attended East Brunswick High School.[9][10] 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.[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, 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.[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 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.[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 tradition 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, 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 having served 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. Arzu Forough of the organization Washington Autism Alliance & Advocacy supported the campaign, but claimed that ASAN and press coverage of the campaign could obscure the degree of difficulty and the true nature of autism.[29]

He won the $100,000 Ruderman prize in 2014.[30][31]

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 opposed a version of Kevin and Avonte’s Law, which would have provided money to fight wandering behavior in autistic children, expressing concern that the proposed legislation would allow the use of tracking devices "for purposes other than locating missing persons". After Congress failed to pass Kevin and Avonte’s Law, Ari Ne'eman wrote an article in Vox stating that while ASAN had originally been neutral on the legislation, it switched to opposition because of civil liberties concerns, noting that many autistic children and adults were subject to abuse by caretakers and family members.[35] 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.[36] Later, a revised version of Kevin and Avonte's Law passed which did not include the language ASAN had objected to.[37]

Ne'eman supported the FDA's ban on electric shock devices at the Judge Rotenberg Center in 2020.[38]

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.[39][40][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 Ari Ne'eman doesn't understand the suffering those severely affected by classic autism and their parents endure.[9] Liz Bell, the wife of former Autism Speaks executive Peter Bell, told Ne'eman that while she was fine with acceptance for high-functioning autistic individuals, her low-functioning autistic son should receive medical treatment or a cure.[43]

Personal life

Ne'eman married Rabbi Ruti Regan, a Conservative Jewish Rabbinical scholar and disability rights advocate, in July 2017.[44]

gollark: Mass I could kind of see in the "minimum configuration necessary to represent it somehow" sense, but not charge.
gollark: How does, say, the bit string "00101010000101010" have *charge* and *mass*?
gollark: ... what?
gollark: For example, "particle X is 0.5m from particle Y".
gollark: I mean, isn't much of the "information" content of stuff... relative to other things?

References
  1. Kalb, Claudia (May 15, 2009). "Erasing Autism". Newsweek. Retrieved April 10, 2012.
  2. "President Obama Announces More Key Administration Posts, 12/16/09" (Press release). The White House. December 16, 2009. Retrieved April 10, 2012.
  3. Diament, Michelle (June 22, 2010). "Senate Confirms Controversial Autism Self-Advocate To National Disability Council". Disability Scoop. Retrieved April 10, 2012.
  4. Young, Jonathan (September 19, 2011). "Letter to Secretary Duncan Regarding Forthcoming NCLB Waivers". National Council on Disability. Retrieved May 10, 2012.
  5. Ne'eman, Ari (17 September 2015). "Leaving NCD: Accomplishments and Disappointments from Five Years of Public Service". Sometimes a Lion. Retrieved 19 July 2016.
  6. "Ari Ne'eman". American Civil Liberties Union. Retrieved 31 January 2018.
  7. "Ari Ne'eman". healthpolicy.fas.harvard.edu. Retrieved 2019-12-20.
  8. Schere, Daniel (2017-03-24). "You Should Know... Ari Ne'eman". Washington Jewish Week. Retrieved 2019-12-20.
  9. Harmon, 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."
  10. Marx, Greg. "Another View on Autism: Self-advocates reject the term disease; seek accommodations instead.", New Jersey Monthly, June 26, 2009. Accessed September 9, 2013. "Ne’eman, a graduate of East Brunswick High School, can be sensitive about how he is portrayed, and not without reason."
  11. "Autistic Self-advocate and Obama Appointee Ari Ne'eman Wins $100,000 Ruderman Prize". Haaretz. 2015-01-26. Retrieved 2019-12-20.
  12. Edelson, Mat (2009). "Abnormal Ambitions". UMBC Magazine. Winter 2009. Retrieved April 10, 2012.
  13. "Madness Radio: Autism Self Advocacy Ari Ne'eman". Northampton, MA: Madness Radio. October 14, 2009. Retrieved April 10, 2012.
  14. "Alumni Accolades: Mu Delta" (PDF). The Lion. 98 (1): 8. Winter–Spring 2010. Archived from the original (PDF) on July 17, 2011. Retrieved January 3, 2011.
  15. GOV. CORZINE MAKES DIRECT APPOINTMENTS TO SPECIAL EDUCATION REVIEW COMMISSION, US Fed News, February 27, 2006. Accessed September 9, 2013. "Appoint Ari Daniel Ne'eman (East Brunswick, Middlesex)"
  16. Special Education Review Commission Report submitted April 2007, Garden State Coalition of Schools. Accessed September 9, 2013.
  17. ACTION ALERT: Autistic Six-Year-Old Charged with Assault | Autistic Self Advocacy Network
  18. Testimony on Aversives & Restraints, Autistic Self Advocacy Network, March 2, 2007. Accessed September 9, 2013.
  19. Comments at November 30, 2007 IACC Meeting | Autistic Self Advocacy Network
  20. Kras, Joseph F. "The 'Ransom Notes' Affair: When the Neurodiversity Movement Came of Age", Disability Studies Quarterly, Vol. 30, No. 1 (2010). Accessed September 9, 2013.
  21. Wallis, Claudia (November 6, 2009). "'I Am Autism': An Advocacy Video Sparks Protest". Time.
  22. Position Statements | Autistic Self Advocacy Network
  23. CONGRESSIONAL RECORD—HOUSE September 17, 2008 Archived December 5, 2010, at the Wayback Machine, Congressional Record. Accessed September 9, 2013.
  24. Ne'eman, Ari. "A Message from ASAN President Ari Ne'eman". Autistic Self Advocacy Network. Retrieved 19 July 2016.
  25. "The Right to Live in This World". www.goodreads.com. Retrieved 2019-12-20.
  26. "Autistic adults vie for a place in the work force". New Jersey. September 26, 2009. Retrieved December 28, 2016.
  27. Pfeiffer, Dan (May 6, 2010). "Obstruction as a Political Strategy". whitehouse.gov. Retrieved April 10, 2012.
  28. "Leadership, Autistic Self Advocacy Network". ASAN. Retrieved April 10, 2012.
  29. Person, Daniel (17 July 2013). "Who Should Define Autism?". Seattle Weekly News. Archived from the original on 2016-05-08. Retrieved 1 March 2016.
  30. "2014 Morton E. Ruderman Award in Inclusion Recipient". Ruderman Family Foundation. Archived from the original on 5 April 2016. Retrieved 4 April 2016.
  31. Sommer, Allison Kaplan. "Autistic Self-advocate and Obama Appointee Ari Ne'eman Wins $100,000 Ruderman Prize". Haaretz. Retrieved 4 April 2016.
  32. Mathews, Dylan (2016-01-16). "Hillary Clinton's autism plan shows just how far the autism rights movement has come". Vox. Retrieved 2020-02-18.
  33. Powell, Robyn (2020-01-03). "Elizabeth Warren Just Proved She's Serious About Disability Rights". Rewire.News. Retrieved 2020-02-18.
  34. "Fighting for Disability Rights". Bernie Sanders.
  35. Ne'eman, Ari. "117 Safety versus autonomy: advocates for autistic children split over tracking devices". Vox. Retrieved 14 February 2019.
  36. Lutz, Amy. "117 Autistic Children and Adults Who Died Deserve Better". Psychology Today. Retrieved 25 December 2016.
  37. Congress, US. "117 S.2070 - Kevin and Avonte's Law of 2017". Congress.gov. Retrieved 14 February 2019.
  38. Adams, Heather (9 March 2020). "After FDA bans Massachusetts school from using electric shock devices, advocates seek public apology, reparations". masslive. Retrieved 13 March 2020.
  39. "How the Disability Community Can Respond to Covid-19". American Association for People with Disabilities. March 13, 2020.
  40. Ne'eman, Ari (March 23, 2020). "'I Will Not Apologize for My Needs'". The New York Times.
  41. Ne'eman, Ari (March 24, 2020). "How governments should maintain disability services during the pandemic". Spectrum News.
  42. Carey, Matt (23 December 2009). "Ari Ne'eman on disability". Left Brain Right Brain. Retrieved 5 May 2019.
  43. Donvan, John; Zucker, Caren (2016). In a Different Key: The Story of Autism. Crown. pp. 523–528. ISBN 978-0-307-98568-2. Retrieved 13 March 2020.
  44. Silverstein, Barbara (2018-04-05). "American disability advocates to speak at conference". The Canadian Jewish News. Retrieved 2019-12-20.
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