Autism and the Ethics of Inclusion: A Matter of Civil Rights
Obama's appointee to the National Council on DisAbility, Ari Ne'eman spoke locally about what it means to be “different” in an America built on equality and "justice for all.”
When autism advocate Ari Ne'eman, Barack Obama's appointee to the National Council on DisAbility, recently spoke locally, the discussion was not about autism, per se, but about civil rights.
Specifically, Ne'eman discussed how the role of the disabled person relates to history and human rights, and what it means to be “different” in an America built on the tenents of equality and "justice for all.”
“Nobody should have to pretend to be something that they’re not, as a means of being included in their own society,” he said in an one-hour speech at Bloomfield High School on April 26. “We are taught at a very young age that to be ‘different’ is to be ‘wrong.’ [For those who are different] that’s a horrendous way of living.”
Ne’eman, who is himself autistic, addressed a range of issues facing disabled Americans, specifically those with autism. The definition of ‘normalcy,’ he said, largely determines a school district’s attitude toward classroom inclusion, as well as host of other issues from social acceptance to employability.
Ne’eman spoke movingly about his own experiences as an autistic child, where he faced isolation and segregation from his non-afflicted peers and was forced to leave his neighborhood school and attend a faraway “special school.” There, scrubbing dishes and mopping floors was seen as appropriate life training for the students.
Today Ne’eman, in addition to being Obama's appointee, is the president and co-founder of the national Autistic Self-Advocacy Network. He maintains that the ultimate goal of autism advocacy efforts is inclusion, not just in schools but in the larger world, and that anything less is a violation of human and civil rights.
Still, the challenge and complexity of inclusion becomes evident when one considers the wide range of autism diagnoses. Children with the mildest form of autism, Asperger’s Syndrome, often attend regular schools and later, can live without discrimination within “mainstream” society. But inclusion may be nearly impossible for those with severe autism, who are sometimes non-verbal and lacking the most basic forms of self-reliance. Even children who engage in disruptive outbursts and repetitive motions can be seen as unlikely candidates for inclusion in the eyes of many educators.
For this reason, treatment of autism has historically focused on helping patients acquire traits that allow them to fit more neatly into the existing social order. Citing one renowned researcher, Dr. Ivar Lovaas, Ne’eman noted that rendering autistic patients “indistinguishable from their peers” – in other words, able to mimic ‘normalcy’-- was widely seen as "success” in the field of autism treatment.
In describing Lovaas’ methods, his own website states, “half the children with autism who received his intensive treatment become indistinguishable from other children on tests of cognitive and social skills by the time they completed first grade.”
“I don’t know many people whose goal, when they wake up in the morning, is to be indistinguishable from their peers,” noted Ne’eman wryly in his speech. “Lovaas’ studies weren’t measuring independent living skills or academic skills like science or math, they were measuring indistinguishability from peers. Is that meaningful?”
Designing treatment methods based on conformity to an opposing ideal automatically defines the starting point, "acting autistic," as "wrong," Ne’eman said.
Exploring the notion of different = wrong in a separate context, Lovaas conducted other studies, notably the “Feminine Boy Project” conducted at UCLA medical center in the 1970s, which ran concurrently with the UCLA “Young Autism Project.”
“The purpose of the Feminine Boy Project was “to rescue children from homosexuality. Now, we understand this to be an astonishingly disreputable undertaking,” said Ne’eman, noting that Lovaas’ treatment methods for the Young Autism Project have not been challenged in the same way in the intervening years.
“The medical model of disability was viewed from a perspective of charity but not from a perspective of civil rights,” he said. “Horrible things happen in our society to people who are not ‘normal’.”
Still, Ne’eman is hopeful that increased awareness can vastly improve the lives of autistic people. Great strides can be made, he contends, by first recognizing the crucial difference between what society sees as problematic and what is in fact problematic to the person with autism.
“Acquiring social norms like hygiene are valuable because there’s a reason for it. It’s not like eye contact,” he said, referring to the difficulty many autistic people have with meeting other people’s gaze. “You have to ask, is this something that is a problem for the child or the people around the child? It’s perfectly legitimate to encourage skill-learning that will help children survive and get a job, etc. But hand-flapping doesn’t hurt anyone. It can be very important to us and very comforting to us.”
In fact, Ne’eman himself maintained constant eye contact with members of the audience throughout his presentation, and conversed calmly and knowledgeably with individuals at the conclusion of the program.
“You’re a great public speaker!” declared one audience member admiringly.
“The talk was great,” raved Hedi Kovacs of the Bloomfield Special Education Parent Advisory Council. “It’s an important message to be carried to people in our society: to include everyone.”
She added, “It’s easy to write out a check for the Special Olympics. We do have compassion in our communities but still, people don’t call someone with a disability and say, ‘Hey, want to go out?’ ”
For more information go to:
New York Times article on Ari Ne'eman, March 27, 2010