An anonymous Senate hold hampering the first-ever nomination of a person with autism to the National Council on Disability is highlighting rifts within the autism community. But despite the political hitch, President Barack Obama remains solidly behind his nominee.
Obama nominated Ari Ne’eman, the 22-year-old founder of the Autistic Self-Advocacy Network, and seven others to the council in December 2009.
Now, The New York Times reports that under a highly secretive parliamentary move in the Senate, a hold was placed on Ne’eman’s nomination anonymously by one or more members of the body. Meanwhile, the other seven nominees were confirmed.
It is unclear why Ne’eman’s nomination was delayed, but the effort to derail his appointment is leading some to suspect that Ne’eman’s sometimes divisive views on autism could be the reason. A proponent of neurodiversity, Ne’eman has said he does not believe the disorder should be cured, but rather that it should be accepted and accommodated as part of a person’s identity.
Despite the holdup, however, Obama remains confident Ne’eman’s nomination will be confirmed.
“We are still behind Mr. Ne’eman and hope for a quick confirmation,” a senior White House official told Disability Scoop on Monday.
Though Ne’eman has largely stayed out of the spotlight since being nominated to the council — and declined interviews for this story — he made his name with strong opinions and has at times publicly butted heads with Autism Speaks, the nation’s largest autism advocacy organization. Most recently, Ne’eman’s organization waged protests against Autism Speaks after it rolled out a fund-raising video that presented a negative view of life with autism.
Many parents whose children are far more adversely affected by autism than Ne’eman pounced when they learned of his nomination to the National Council on Disability, which makes recommendations to the president and Congress on disability issues. Some at Autism Speaks have also publicly criticized the nomination.
Nonetheless, more than a dozen disability advocacy groups including the Autism Society of America, Easter Seals, Special Olympics and the American Association of People with Disabilities have expressed support for Ne’eman’s appointment.
Those close to Ne’eman say they’re trying not to read too much into the Senate hold. “It’s all kind of speculative,” says Scott Michael Robertson, who is vice president of Ne’eman’s Autistic Self-Advocacy Network. “I think it may just be politics as usual.”
I think it would be more accurate to describe the organization Autism Speaks as the one with the divisive views. Logic would dictate that the “Nothing About Us Without Us” position that Ari Ne’eman has espoused is both the correct, and “mainstream” disability rights perspective.
Those who would deny people with disabilities our voice, and who demand instead to speak “for us,” and get paid hundreds of thousands of dollars to do so, are in fact, the ones who are being divisive. Might (and tons of money and Hollywood connections) does NOT make right!
Congratulations to the White House for their continued support of an inspired and brilliant pick for the NCD in Ari Ne’eman. And thanks to Disability Scoop for sharing this great update.
I am so happy to know Ari and proud of the work he is doing for all children with disabilities in the public school system.
He is a great person and a great advocate for children and adults!!!
Thank you Ari for all you are doing!!!
Phyllis
It is extremely important that we have diverse views from people with disabilities such as Ari Ne’eman as members of groups such as the National Council on Disability. Folks on the autism spectrum, as with most disabilities, represent a range of abilities and problems. Too often, our policy and programs are targeted at the most profoundly effected individuals and ignore the larger number of folks a way up the scale. These policies and programs tend to be based on what non-disabled “experts” opine. Without personal, individual and directly-expressed opinions and information directly from recipients, there is no way to assure that programs are actually being operated in the best interests of their professed target groups and clients. Or, in the case of bad policy and poor programs, their victims.
If Mr. Ne’man’s views are controversial, all the better. Perhaps a clear understanding of what he is saying, and the positions he espouses, will give us more valid information regarding providing what folks with disabilities really need, rather than what they are thought to need, in order to live full, rich and productive lives – and these according to their standards rather than those politically or programmatically imposed on them.
Hummm…let’s see. As the parent of low functioning children with severe autism, the most important thing I want for my kids is for them to be accepted and included by everyone in society, and for them to serve society if they choose. To do that, the community needs programs and supports to help make that happen.
Meanwhile, the largest autism organization in America doesn’t spend one dollar on programs or supports, while at the same time attempts to stop the nomination of someone with autism from serving on a national committee along side his traditionally developing peers.
Huh?
Clay:
Where did you get the impression that Autism Speaks does not fund programs or supports?
Autism Speaks has spent over $120,000,000 over the past five years for scientific research, advocacy, family supports and awareness. Can you name an autism organization that even comes close?
Take a look at the following hyperlinks:
Science Research and Clinical Programs:
http://www.autismspeaks.org/science/programs/index.php
Family Service Grants:
http://www.autismspeaks.org/community/family_services/grants.php
First 100 Day Kit
http://www.autismspeaks.org/community/family_services/100_day_kit.php
Legislative Advocacy
http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909853/k.BE44/Home.htm
There is a lot more more information at http://www.autismspeaks.org/
Thanks, Marc, for the links. I was describing “programs and supports” in the context of practical community based programming that people with severe autism need in order to maximize advantage of society’s options. The Family Services Grants, of which $400k is outlined on the website, may in fact do that, so I stand corrected. However, Science Research and Clinical programs and Legislative Advocacy certainly don’t provide those types of services. The First 100 Day Kit is a nice manual, but again, not a support program.
Thanks again for the information.
Clay,
Full disclosure, I do not work for Autism Speaks but my wife and I are active supporters.
As I remember it, both NAAR and Autism Speaks started with the primary goals of funding biomedical research related to the cause and potential treatment of autism. NAAR (as well as CAN) merged into Autism Speaks (AS). That being said, the primary focus remains scientific research but AS has recently moved into advocacy and awareness, all of those public service ads on TV and in the papers and the move to change state laws to get autism treatment covered by insurance, as well as the new federal healthcare legislation. Don’t dismiss the importance of that effort. Who ever heard of autism 15-20 years ago? It was an orphan disease caused by refrigerator moms (remember Dr. Bruno Bettelheim?), now it is all over the news and good progress related to acceptance and programs is being made.
The 100 Day Kit is highly significant. When my wife and I stated this journey with our son over 16 years ago there was nothing, absolutely nothing to help us out. We didn’t know who to see or what to do. Forget our pediatrician, he was only good for strep throat. The Internet was in its infancy. We live near NYC and the NYC academic medical centers were useless in terms of providing guidance all they could do was diagnose a program (e.,g., PDD NOS, Autism, delayed communication/sensory disorder, etc.) and then wave to us as we left absolutely devastated. We had to find all of our own resources by networking with other parents who were in the same situation. My wife and other like minded parents developed their own local Resource Guide providing listings of therapists, doctors, dentists as well as a road map as to what the CPSE/IEP was and how to negotiate it. They placed it in local libraries and finally our school district picked it up and stared to disseminate through their Special Ed department and it spread to other school districts.
Why am I telling you all this? Well, the 100 Day Kit is a much more sophisticated and complete version of our original handbook but for a much larger audience. I am not claiming that they used ours as a base. They did their own and it is much better. I wish we had this sort of thing 16 years ago. We wouldn’t have felt so isolated and lost so much time. Its a roadmap. To me it is as significant as a social program.
In terms of support programs, I know that AS is developing a Transition Toolkit for older children. My wife and I would love to see funding for adult homes and job programs and we hope that is in the future as well. Our son is almost 18 and we are staring down that scary road.
The self advocacy movement has ironically allowed self advocates such as Ari Ne’eman to substitute their group judgment for that of disabled individuals, a practice just as bad as allowing doctors, government, insurance companies, or schools to make unilateral decisions about people’s lives without ever needing to include them in decision-making or respect the differences in their needs and choices.