As on many things relating to autism, Age of Autism has it wrong, yet again. This doesn't come as a great surprise to many, I'm sure. Ari Ne'eman doesn't divide the autistic community. The outcry generated against him is but a symptom of the divide between parents of autistic individuals on the internet (probably not a representative sample) who on the one hand think their child's autism, recovery/cure or not, is about themselves, the parents, and those parents who think their child's autism is primarily about the child: the child's needs come first.
I suspect that a great many parents of autistic individuals don't have much interest in what's going on in the internet world because their real world experiences leave them too busy to get involved, or that what free time they do have they find better spent elsewhere. In other words, I think the internet activism represents the personal interests and proclivities of the individuals online and skews the sample. In other words, I refuse to use the availability heuristic and draw from the internet pool and believe it represents the wider world of autism. We don't really know what most parents think of Ne'eman's appointment, and I'd bet you that most are completely unaware of it.
Ne'eman, as someone with a neurological difference, who navigates the disability world from the inside out, is well-suited to serve on the council. He is erudite and well versed in the autism world. In 2008, he was coauthor, along with Alicia Broderick of the article "Autism as metaphor: narrative and counter-narrative," which was published in the International Journal of Inclusive Education.
Broderick and Ne'eman write:
The autism spectrum in its many variations is an ‘invisible disability’ and so we have to work to be able to explain the myriad ways in which it is experienced to those who are not autistic or who are not intimately familiar with someone who is. (p. 473)
It is ironic in some ways that parents and self-advocates should be so divided, as that they do share many goals for public policy and social change. It is the rhetoric of the autism community — as well as its upside down perception of the self-advocate narrative as secondary to the parent one — that divide the two groups. (p. 473)
By improving public education and funding for transition and adult supports, we can reduce the perceived and actual difficulties imposed upon families. (p. 473)
Ne'eman is not the cause of the divide, but he clearly represents all that the AoA parents stand against: an articulate and capable spokesperson for those with disabilities, one who stands for "improving public education and funding for transition and adult supports."
The powers that be over at AoA write: "It is an insult to our community and to the people of this nation who will bear the enormous costs of millions of children and adults with autism that a 22-year-old student has been nominated to this position."
If by "our community" they mean the anti-vaxxing militant biomedders who wish to recover their children who are empty suitcases to them, well, then yes, I suppose he is an insult to them. Ari is far more than a student, and he's certainly proven a depth to him that I am sure makes AoA's token autism self-advocate squirm. The eloquence and intellectual curiosity that Ne'eman displays is extremely mature and robust. He's worked actively to speak out for autistic individuals, to support their own advocacy. No, he's not perfect, we none of us are, and I'm not suggesting hero worship. I am stating that AoA's contention that Ari Ne'eman is unqualified is an inaccurate assessment based on a collective temper tantrum because nobody in power or in a position of informed knowledge will listen to them and take them seriously.
AoA writes, "Mr. Ne'eman opposes the mission of the country's leading autism organization, Autism Speaks, which supports efforts to prevent and cure autism." So do I, but more because they fund themselves before funding research and they offer little real help to the community from which they take so very, very much. I don't support Autism Speaks because AS has proven it isn't about autistics speaking.
For AoA to write "Mr. Ne'eman's views are extremist" is hilarious in the extreme. AoA is a fringe element whose views are beyond extreme.
AoA writes: "Rhetoric and denial will not end the suffering."
Thankfully, we agree on something, but not in the way they intend. AoA's empty rhetoric and denial of the science showing no link between autism and vaccines and their need to pursue woo beyond all measure of rationality only propagates the suffering of autistic individuals. Seeing your children and individuals with autism as stolen away and in need of recovery furthers suffering. Putting your children through crackpot treatments increases suffering.
Sending parents of newly diagnosed children down the woo hole behind you furthers the suffering of children and parents alike.
Parents who want to recover their children at all any cost, who view them as stolen, soulless, and damaged have no business anywhere near the Council on Disability. Disabled individuals do. They can offer insight, empathy and understanding that the AoA parents will never be able to offer.
Comments closed on this post due to, well, if you read through the comments, you'll have no problem with figuring out why. I have no problem with a wide variety of perspectives being presented by commenters, by disagreements between commenters, but I have my limits and two FC posters pushed it.
If you'd like to discuss the lack of cohesion, what I've come to see as a very necessary thing, in the autism-related community, please see Miscommunication: And the Center Does Not Hold.