Monday, March 29, 2010

Obama Disability Nominee Ne'eman Says Curing Autism Disorders is Morally Reprehensible

The Autism Action Network has called for its American readers to contact their Senators to voice their opposition to US President Obama's disability council nominee Ari Ne'eman. I wish them success although from what I understand the nomination is unlikely to be disturbed.  This Canadian father of a severely autistic son  is very disappointed that Mr. Ne'eman will ultimately be approved and will be in a position to influence autism policies in the US and consequently around the world.  

I have followed with great interest the US Health Care debate and President Obama's historic struggle to bring health care to all Americans.  I am perplexed that the great US health care president would, at the same time, appoint  to an important disability council  a very high functioning person with Aspergers who does not believe that autism is a medical disability or disorder and  is opposed to curing autism spectrum disorders.  

Mr. Ari Ne'eman does not view autism disorders as disorders in a medical sense  notwithstanding his own medical diagnosis of Aspergers Disorder.  Nor does he restrict himself to  rejecting a cure for himself, or for other very high functioning persons with Aspergers Disorder.  He tells the world that all autistic persons do not want to be cured.  

The Autism Action Network has gathered a number of Mr. Ne'eman's more outrageous and offensive statements:

"June 10, 2008 on Good Morning America, Neeman said, "We do not think to aim for a cure is the right approach to take."
December 10, 2009 interview with the CBC, "Autism is currently viewed as a disease of the medical model---Something to be cured or eliminated. That doesn't reflect how we view ourselves, that doesn't reflect our realities."
In his essay Equality Demands Responsibility, 2006, Ne'eman wrote, "But if we are to demand equal legitimacy, if we are to assert that a 'cure' is not only unnecessary and undesirable but morally reprehensible, then we must accept for ourselves equal responsibilities.""

This very high functioning gentleman does not seem troubled by his Aspergers disorder but there are many low functioning persons with severe Autistic Disorder who do suffer. Some never survive to the age of 12, the age at which Mr. Ne'eman apparently received his Aspergers diagnosis. Some are lost forever in local traffic, neighborhood pools or snow storms. Some require intensive therapy to prevent dangerous self injurious behavior.  Some live their lives in institutional and residential facilities  dependent on the care of strangers.  The young university student with  a very mild variety of Aspergers disorder opposes curing those with more severe, restrictive types of autistic disorders and purports, with no common experience and no legitimacy,  to speak on their behalf.

Mr. Ne'eman speaks about "our" views, "our" realities, how "we" view "ourselves".  My son has an Autistic Disorder diagnosis, assessed with profound developmental delays. He is severely autistic.  Mr. Ne'eman the high functioning young university student with Aspergers, and the abilities to interact regularly with the New Yorker magazine, the NYT and Canada's CBC AND negotiate socially in Washington DC political circles  does not know how my son thinks or views himself. Mr. Ne'eman does not have any knowledge whatsoever of my severely autistic son's realities.  When he claims to speak on behalf of all persons with Autism Spectrum Disorders he is misrepresenting himself, and autism disorders, to the world.

Personally, I find Mr. Ne'eman's opposition to curing the autism disorders that afflict so many children and adults to be morally reprehensible and I am very disappointed in US President Obama for appointing him to a position from which he can influence the lives of so many persons with autism disorders.

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jonathan said...

You and the autism action committee forgot to mention that Ne'eman, a 22-year-old who has never had paid employment of any kind has stated that the solution for unemployment among autistics is to eliminate social pleasantry as a criteria in hiring. So, those who would argue for Ne'eman's nomination on the basis that the NDC does not control medical research looking for a cure, these type of simplistic answers on Ne'eman's part are a further reason for any senator to vote against confirming him.

Þorgerður said...

The luxury of looking at autism as an ability instead of a disability.
Not many are that lucky.
America is such a trendsetter for the whole world and your blog is absolutely spot on.