A few months ago, Ari Ne’eman, the president of the Autistic Self-Advocacy Network (ASAN), was nominated to the National Council on Disability by President Obama. Ne’eman, who has Asperger’s Syndrome, is currently a senior majoring in political science at the University of Maryland, Baltimore County; I’ve known him since 2007, after a conference on Autism Advocacy: Witness and Hope that my husband, Jim Fisher, organized. As reported in the March 27th New York Times, Ne’eman’s nomination (which requires Senate confirmation) is currently on hold. The NYT notes that an “anomymous hold” has been placed on the action to confirm him, possibly due to criticism of him from autism advocates, and in particular from advocates who are parents of autistic children.
Originally from New Jersey, Ne’eman has served on New Jersey’s Special Education Review Commission (for which he wrote a report calling for the end of the use of aversives, restraint and seclusion on students with disabilities in public schools). Ne’eman also played a key role in proposing legislation to end institutionalization of individuals with developmental disabilities in New Jersey (go here to read more about New Jersey De-Institutionalization Bill A3625). In December of 2007, Ne’eman and ASAN took the lead in protesting “Ransom Notes,” a “public service” campaign launched by the New York University Child Study Center (NYU CSC) to raise awareness about various childhood psychiatric disorders including autism and bulimia. The campaign involved advertisements in the form of ransom notes posted on billboardsaround New York. Autistic self-advocates and parents joined together to call for the NYU CSC to pull the ads which, after media coverage in the New York Times and Wall Street Journal, indeed occurred.
Ne’eman’s name has become associated with controversy in the autism community due to his stating that he does not believe in a cure for autism and his association with neurodiversity, according to which individuals on the autism spectrum should be understood as different rather than as “disordered.” As a May 25, 2008, New York magazine article by writer Andrew Solomon put it, “atypical brain function” is to be “celebrated as a positive identify,” rather than as something dysfunctional, as an impairment. Ne’eman was featured in the New York magazine article along with Kathleen Seidel, who oversees the website Neurodiversity. He has also been the subject of articles in Newsweek and in the UMBC magazine, in which Ne’eman details his difficulties in school, which included bullying, being placed in a separate school for students with disabilities, and advocating for his own transition back to a mainstream school setting.
Regularly overlooked in criticisms of Ne’eman are his account of his own painful school experiences (which are certainly familiar to many individuals on the spectrum and their parents); his advocacy work for individuals with developmental disabilities in New Jersey and beyond; and his and ASAN’s consistent call for quality of life concerns, including the use of assistive technology to help people communicate and the de-institutionalization of individuals with disabilities. Critics of neurodiversity tend to be parents of autistic children, such as Jonathan Shestack of Autism Speaks, who is quoted in the NYT article (Ne’eman and other self-advocates have been critical of some of Autism Speaks’ awareness campaigns). Such critics focus on Ne’eman statements about there being no need for a “cure” for autism and on his own speaking, writing, and other abilities. How (they say) can such an articulate 21-year-old college student be thought to have anything in common with a severely autistic individuals who is non-verbal, self-injurious, unable to read or write?
I’m the mother of a child who is on the moderate to severe end of the autism spectrum. And I’m in favor of Ari Ne’eman being appointed to National Council on Disability. I understand the concerns of parents such as Shestack. Certainly my own son is very different from Ari, and has a very different range of needs and challenges. And yet, from my conversations with Ari, I’ve noted many overlaps (especially about sensory sensitivities). Further, as evidenced by his support of New Jersey De-Institutionalization Bill A3625, Ari seeks to make changes for individuals with disabilities in concrete, meaningful ways that directly affect their and their families’ everyday lives. His understanding and sympathy for individuals like my son are far deeper, and more informed, than his critics convey. “‘From our perspective, it’s great to have a person on the spectrum being nominated to this committee,’” Lee Grossman, president of the Autism Society of America, is quoted in the NYT, and I concur. It is indeed significant that an individual on the spectrum has been nominated to the National Council on Disability. Rather than continually debating abstract notions of “cure,” we should acknowledge that we’re all in this together and work to make real, positive change in the lives of individuals on the autism spectrum.
Photo by the author.
Kristina Chew, Ph.D., Assoc. Professor of Classics at Saint Peter's College in New Jersey. Since 2005, she has been blogging about autism, disabilities, and education, previously at Autism Vox and now at We Go With Him, a daily journal about life with her 12 1/2 year old son. She has recently published essays in Disability Studies Quarterly and in Gravity Pulls You In: Perspectives on Parenting Children on the Autism Spectrum (ed. Kyra Anderson and Vicki Forman).