Monday, January 04, 2010

Obama Disability Nominee Doesn't View Autism as a Real Disability, Marginalizes Role of Parents, Caregivers

US President Barack Obama has nominated Ari Ne'eman, a  University student with an apparently very mild form of Aspergers Disorder, to a national disability council.  Since that nomination was made public Mr. Ne'eman has issued statements through friendly bloggers, all too willing to uncritically promote his views,  stating that he DOES see autism as a disability.  Mr. Ne'eman in fact only sees autism disorders as disabilities in the social model sense, in the sense  that society fails to accommodate persons with autism, thereby creating the disability.

The following quote is from a June 2008 NPR  (obviously well before he was nominated by US President Obama) interview:

"As its name suggests, the Autistic Self-Advocacy Network aims to help people with the disorder represent themselves, instead of relying on families and care providers to speak for them. They share a credo with other disability groups: "Nothing about us without us."

Ne'em describes Asperger's and autism as disabilities — but with a twist. "We're disabled by society," he says. "What disables us is, for instance, an education system that's only designed to meet the needs of one kind of student, or societal prejudices which say that autistic people will never be able to live in a community."

[Highlighting added for emphasis - HLD]

Ari Ne'eman, a very high functioning young University student with Aspergers, who is capable of communicating with NPR, the New Yorker, CBC, Newsweek, and Washington politicians, officials and dignitaries,  including the First Lady of the United States, feels entitled to speak authoritatively about Aspergers AND autism, including the 75-80% of persons with Autistic Disorder and cognitive impairments.  He does so on the premise that autism is a disability ONLY because of society's  treatment of people with autism whatever he means by the terms autism and Aspergers.  It is not clear what he in fact means by these terms since he does not endorse the medical model of autism disability.

Apart from not viewing autism disorders as medical disabilities  the  University student with Aspergers feels that his views about Autistic Disorder and other autism  spectrum disorders should be given greater weight in relation to autistic children than the parents and caregivers of those children.  Mr. Ne'eman clearly does not respect the role of parents in representing the interests of their autistic children, particularly those severely autistic children who can not speak for themselves and with whom Mr. Ne'eman has so very little in common. Many parents seek treatment and cure for their autistic children's autism disorder disabilities.

US President Barack Obama is seen by many, including this Canadian, as an outstanding leader on many fronts.  With respect to autism disorders though Mr. Obama has signaled, at best, a lack of understanding of  the real challenges facing the severely autistic ... and the family members who care for them ... by nominating a  University student who does not understand the seriousness of the challenges faced by those with actual Autistic Disorder and their families and caregivers.  President Obama has nominated as a disability representative a person who, at best, views autism as a "social",or societally caused,  not a real disability, who opposes the rights of autistic children to be cured of their autism, and who marginalizes  the role, the right and the duty of parents and caregivers in advancing their autistic children's best interests.

At least  Mr. Ne'eman will be  happy. His presidential endorsement will garner him more interviews with NPR, the New Yorker, CBC, Newsweek, TIME etc., etc., etc., etc., etc., etc.  Meanwhile parents and caregivers will continue to struggle, day in and day out, to actually care for and help their autistic children, the  autistic children on whose behalf Mr. Ne'eman claims to speak.

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Adrianna said...

I encourage people to put aside, for the minute, how they feel about Ari Ne'eman, whether as a person, a leader, or a legitimate autistic. Instead, let's look at the facts.

Ari Ne'eman has little to no work experience, so he is in no position to talk about employment.

He has no educational or medical background.

He is studying public policy, but has not yet gotten his degree.

He has limited political experience. Sure, he has met a few politiciaans and lobbied for a few causes. Has he been elected to office? Served on lower committees? There are politicians far more experienced and educated than him who spend most of their lives trying to get promotions like that.

Lastly, he has little experience with...disability. First, he has little to no experience with any form or degree of autism other than the one he (allegedly) has. He certainly knows very little about severe autism. Autism also isn't the only disability he will have to know about. What does he know about treatments for schizophrenia? Accomodations for people with cochlear implants? The barriers low-income lupus patients face to receiving quality care? Has he ever tried to tutor, care for, or supervise people with disabilities in any setting? Has he ever had to prosecute or defend them, or be their advocate, in a courtroom?

People who worship him need to face it. He may be bright. He may be well-qualified for a lot of different jobs. He is, however, woefully underqualified for this one.

Claire said...

Adrianna...very well put!

Celeste Jean said...

I was hoping that it would get easier for parents to get help during the Obama administration, but it looks like that will not be the case.

farmwifetwo said...

Completely OT but I wanted to know if you saw this. LBRB had a 'see leaky guts having nothing to do with autism' post... of which my comment still hasn't been approved.

This is the actual article. Not their cut and paste about how "credible science... etc" How anti-vaccine holds back credible research - it's in my favs. I don't know where they got the header from since it has NOTHING to do with what's in the article AND the article does say that "gut issues" will increase autism behaviours and it DOES SAY that more research needs to be done.

Amazing what one can do, when one cuts and pastes and article...

Adrianna said...


Thanks a lot.:)

Actually, I want to add a little bit to what I said before.

Not only does Ne'eman know nothing about the world of employment, but he really doesn't know anything about life in general. He has wealthy, influential parents, has few impairments, and is in relatively good health.

My father is a bipolar alcoholic and my mother is a housewife with only a high school diploma and little income. I'm on food stamps, Medicaid, and stock coolers for a living. Back in the day, I could stock coolers for the rest of my life, make a good living, have benefits and rights, and be in a union. That's not true anymore. I have medical complications that may eventually impair my ability to do the job. Do you really think theu'll keep me around?

And no, I can't just get another job. I'm not in good enough health, I can't pass the job interview, and I don't have the skills. No department store wants a sales rep whose tics scare off customers and who has barely intelligible speech. No one wants a cashier whose motor impairments slow her down on Black Friday. It's not gonna happen.

I stock coolers because it requires minimal social skills, multi-tasking, or any high-level cognitive function. (I'm capable of high-level cognitive function, but not at the speed or in the environment I will be required to perform them in.) I like the quiet and the simplicity and I'm a good worker. I'm strong, I don't complain, and I'm polite to my co-workers. But I'm not good enough that they will let me get away with costing them money.

I actually am in the process of getting an advanced degree, but that will be years. Again, I don't have wealthy parents so I can't just dip into my trust fund. I'm too capable for SSDI, and I don't WANT to live on the dole. I have aspirations. Moreover, who knows if I will ever get a job outside of stocking coolers? Will I get past the interview stage? Will I be able to handle the environment and the people?

Never mind those autistics that will never have advanced degrees.

Again, Ne'eman's educational and financial future is not in doubt. He has never lived in poverty or at the mercy/off the labor of others. What does he know?

lurker said...

I don't know what knowledge he has that would suit him for the position, but I only know he's skilled at using benevolent and eloquent rhetoric about disabilities. If he or anyone else in a similar position were to really tackle the problems of getting necessary services to those with autism, he would have to challenge the lackluster bureaucracy that isn't implementing things well. But to me, he seems like the type who wants to hobnob with the bureaucrats.

I wonder if he would even have the time for this position considering all the other things he's involved in. Knowing that he has tried to sneak out of his previous statements about disability and autism as if he hasn't said them that way, and that he is so dismissive of and resistant to any criticism, he has characteristics unbecoming of a decent leader.

Roger Kulp said...

Adrianna,you sound a lot like my sister,who has a joint diagnosis of bipolar and HFA/Asperger's,and has a lot of the same medical issues I do,only less severe.She has never been able to complete college,after many tries,and has always worked in menial jobs where she just types data into a computer.

Thanks to an intensive,and for me costly,biomedical treatment program,I am now very close to complete recovery from my long as I keep taking all this crap.

I still have all sorts of serious medical problems,that keep me from working,though,and even "without" autism I am very sick.

As Jake Crosby has said over at Johnathan's blog,Ari Ne'eeman has never had to deal with any of the menial labor,or other garbage like this that most people on the spectrum have had to.He is no spokesman even for most high functioning like himself.His job is to put a false face on autism,and portray it as a lot more minor a condition than it really is.He is being put in by Obama,so the government and their cronies in the vaccine/chemical/ pharmaceutical industries can say to parents autism is no big deal. Even if your kid is nonverbal, banging his head all day,and still in diapers at six or seven,he too can grow up to be like Ari Neeman.