Formal iPetition Asking President Obama to Rescind Ari Ne'eman Nomination to Council on Disabilities
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Dear President Obama:
We the undersigned oppose the nomination of Ari Ne'eman to the National Council on Disability. Although we salute your effort to include a person with an autism spectrum disorder on the council, the choice of Mr. Ne'eman is wrong for the autism community and wrong for our country.
1) We are a nation in the throes of an autism epidemic, with 1 in 110 afflicted and hundreds of thousands of families struggling to confront the enormous financial and emotional hardships of this disorder. 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. Mr. President, how can you praise this nominee's "depth of experience" when he has not held a job, earned a degree or experienced life after college?
2) Mr. Ne'eman vehemently opposes curing autism, calling cure "offensive." However, many individuals who would benefit from a cure are incapable of disagreeing with him. Mr. President, will your appointees also recommend ending the search for cures for childhood cancer and diabetes? Or just autism? Mr. Ne'eman opposes the mission of the country's leading autism organization, Autism Speaks, which supports efforts to prevent and cure autism. He also opposes the depiction of autism as a crisis and does not address the very significant needs of the large population of individuals who are profoundly disabled by autism.
For a member of the National Council on Disability to not advocate for a cure on behalf of tens of thousands of people who suffer from disabling problems such as self injury, inability to speak, incontinence and dependence on others for their care - and who will cost society $3-5 million over a lifetime - is unconscionable. To fight against prevention and cure for such a serious disorder is inhumane and not representative of the majority in the autism community or the general population. Mr. Ne'eman's views are extremist.
3) Finite resources will not stretch far enough to support the large number of people now diagnosed with autism. Without making the goals of prevention and cure a top priority, there will not be sufficient funding to adequately provide for the growing population of people with autism, rendering Mr. Ne'eman's goal of providing better quality of life for those on the autism spectrum unachievable.
4) Many aspects of Mr. Ne'eman's agenda coincide with the interests of the pharmaceutical industry, and he is publicly promoted and supported by individuals and organizations close to that industry. He harshly criticizes non-pharmaceutical treatments that have been clinically proven to benefit individuals on the autism spectrum. Research he does not support could lead to safer and more effective treatments for people on the autism spectrum.
5) Rather than unifying the autism community, Mr. Ne'eman divides it. He equates the search for a cure with outright rejection of all autistic people. Mr. Ne'eman and a small faction within the autism community may personally oppose prevention and cure as is their right, but they do not represent the majority of people on the spectrum, particularly those who are so impaired that they face a lifetime in institutional settings at taxpayers' expense.
6) He erroneously claims the concept of recovery from autism is not scientifically supported. However, recovered individuals have been documented by medical science, and one university study puts the potential for recovery from autism at 10% (of children with autism). His denial of the possibility of recovery will impede efforts to improve the lives of people on the autism spectrum. Mr. Ne'eman, a very high-functioning individual whom Newsweek magazine described as a "master networker" and "fluent in policy-speak" does not require the interventions and treatments he disparages. He does not acknowledge the pain, isolation and life-threatening behaviors of our community's neediest individuals, nor their need for recovery or lessening of their associated medical problems and autistic behaviors.
7) The late Dr. Bernard Rimland challenged the prevailing "refrigerator mother" theory and replaced it with the theory that autism is a biological disorder. Despite Dr. Rimland’s important role in removing the burden of guilt from parents, Mr. Ne'eman now calls on the autism community to stop admiring Dr.Rimland and find new heroes. Among his contributions, Dr. Rimland championed vitamin B-6/magnesium therapy which has been conclusively shown to confer benefits to about half of all children and adults with autism who use it. Thousands have benefited, but Ne'eman maligns Dr. Rimland and belittles his contributions. Mr. Ne’eman’s vilification of a great hero of the autism community is further evidence of his estrangement from the people he is meant to represent.
8) Mr. Ne'eman has obscured the harsh reality of autism with rhetoric. His litany of words - "paradigms, infrastructures, neurodiversity" - does not address the real life problems of people with autism, particularly those most profoundly impaired. Rhetoric and denial will not end the suffering. It will not provide futures for people with autism. And it will not prevent the next generation from being afflicted.
I feel in this day and age with so much information and technology available to us, it would be foolish not to persue all avenues related to autism and disabilities. It could be that many people do have genetic related issues that result in autism but that does not negate the need to research environmental effects or causes as possibilities as well. It makes sense socially and fiscally to help a growing percentage of the population. I think we, as a society, need to find the cause of autism and a cure if possible. It's just common sense.
Posted by: Destiny32 | April 07, 2010 at 10:07 AM
The comment by "NC" shows how Ne'eman divides the community. This commenter lumps all high-functioning people on the spectrum (as well as their parents) together with Ne'eman. I've seen this kind of hatred before - directed against people with aspergers because of Ne'eman and other ND's. Ne'eman is not just hurting autistics who are at the severe end of the spectrum. He is hurting everyone.
The comment about autistics "barely on the spectrum...bitching about their lives" discriminates against people with aspergers and HFA, and has no place on this otherwise supportive blog.
Posted by: Aspie Mom | April 06, 2010 at 09:20 AM
I surely hope that what I am about to say does not have the ring of "mean" to it, but I did all that I could to avoid appointments and policies that would not be good for our country, our people, and our children with autism or other disabilities, bu not voting for Mr. Obama. I so hope that we have learned out lesson. Yes, he has kept his promise as he is moving forward with "change." How in the world did the voters accept such a generic word as "change." Our best bet is to carefully choose our next leader based on his or her promises that are specific, not generic, that show best interest for your country and people, THEN HOLD HIM/HER RESPONSIBLE TO KEEP THEM ONCE HE OR SHE IS IN OFFICE.
Posted by: Andrea Owens | April 06, 2010 at 05:47 AM
I have signed the petition, however, I would like to say that in my opinion, its content is not sufficiently focused and tight and contains too many unrelated political views.
This is the content of my message to the petition:
Mr Ne'eman does not show sufficiently balanced and broad views of autism to represent it. His attitude is to divide our community and actively exclude the voices of others on the spectrum that either disagree with him or shed an uncomfortable light to his concepts of autism. The rise in autism rates, across westernized countries is a real phenomenon, not solely attributed to better recognition or changes of diagnostic criteria. This requires full and non-bias investigations, treatment and prevention, in addition to better accommodation and services. Effective biomedical interventions have emerged, but they do not benefit everyone and often do not address the issues affecting individuals fully. This also needs investigating. Educational and early intensive interventions are very beneficial too and must be provided, as early as possible and at no cost to families. These are not Mr. Ne'eman's agenda, partly because of his insufficient knowledge of the fuller spectrum and partly because he presents with insufficient open mindless to other views.
Posted by: Lorene Amet | April 06, 2010 at 02:42 AM
What a shame they're nominating such a divisive figure. How can someone so set in his views tackle and accomplish something for those in a very varied spectrum? How can he open the dialogue when he thinks only he is right? They don't want to find out the truth, they just nominate someone they know will keep pharma safe and hiding from the truth.
Posted by: ML Garcia | April 05, 2010 at 10:44 PM
I am so sick of people like Ari Ne'eman and parents of autistics who are barely on the spectrum claiming they can speak for lower functioning individuals or bitching about their lives. They have no clue and shouldn't be the voice for our kids.
Posted by: NC | April 05, 2010 at 03:52 PM
"Mr. Ne'eman's views are extremist."
That pretty much says it all. If Obama goes through with this horribly conceived plan, he too will be guilty of extremism, and there will be a price to pay. 40% of the country ALREADY think that Obama is an extremist - when they learn about this, it will only reinforce their oppinion that the President is callous, tone deaf and dangerously irresponsible.
But, he undoubtedly carries the Sebelius Seal of Approval - he's one of the "good," pliable autistics, you see.
So he's in.
Posted by: WarnerC | April 05, 2010 at 02:25 PM
Don't forget to ask spouses to sign. And friends. And relatives. And your entire e-mail contact list. Tell them they can make a difference during Autism Awareness Month - without spending a dime. And ask them to forward your e-mail to their list too.
Thousands of signatures are needed to make an impact.
Posted by: Keep getting signatures! | April 05, 2010 at 12:15 PM
I agree with Alison. Though I feel proud of what Ari N. has accomplished in his life already, I do not think he represents the broad spectrum of concerns regarding Autism. There are 2 distinct views on Autism within the greater community. For the President to nominate only someone from the Cure or Neurodiveristy position is him choosing sides, whether he realizes it or not. But, there are people, such as Stephen, and Temple, and John who walk the line between these two positions beautifully. They are a much for appropriate fit, IMO.
Posted by: AnaB | April 05, 2010 at 11:02 AM
Hello, community people: I do think it's important to have a self advocate representing the myriad needs of individuals with autism. However, there are many wonderful advocates that will ensure all our loved ones' needs are highlighted, addressed, and met. We need someone who is understanding of and knowledgeable about the serious chronic medical illnesses many of those who cannot speak for themselves face.
I have heard some say they are not a ham and do not need to be "cured". For them- great! They are comfortable in their own skin. But I have a son who can speak for himself and if he could have his autism ripped out of him, he surely would!
Until society fully understands autism is not one disorder, we need someone who will be fully-inclusive when advocating on a national level. I'd go for Temple, John Elder Robision, Stephen Mark Shore, or Valerie Paradiz.
The statements that the current nominee has made are not inclusive; not at all!
Posted by: Alison Davis | April 05, 2010 at 09:36 AM