Saturday, May 28, 2011

Ari Ne'eman and company oppose the combating autism act

In answer to my question from my last post, the answer is yes. Ne'eman and ASAN have gone on record as opposing the reauthorization of the combating autism act which is now currently a bill that has been introduced in both houses of congress. Gadfly wonders why this is, since Ne'eman has accepted public membership on the interagency autism coordinating committee which was authorized as part of the combating autism act. Ordinarily, this would seem a strange inconsistency. As has been documented meticulously on numerous occasions on autism's gadfly, these sort of waffling, hypocritical and contradictory actions seem par for the course for Ne'eman and ASAN. If the combating autism act is indeed sunseted then Ne'eman will lose his coveted bully pulpit to preach his fire and brimstone neurodiversity homilies and call those who oppose him perpetrators of genocide as was done when economist Michael Ganz presented his cost/benefit analysis to the meeting that Mr. Ne'eman was in attendance of.

If Ne'eman is so adamantly opposed to this law why would he not refuse his position with the IACC and refuse to be a beneficiary of a federal law and the tax dollars that go along with it?

Ne'eman makes the dumbfounding statement:

This legislation would keep in place a status quo without services, without consideration of the needs of adults and without inclusion of self-advocates. We urge Members of Congress to oppose any long term extension without needed program reforms.”

To the contrary,the status quo is including Ne'eman, a self-advocate opposed to a cure and an at least one time proponent of the idea that autism and Asperger's are not disabilities. Though the combating autism act was designed to prevent and ultimately cure autism and the IACC was authorized by the CAA for that purpose, and provided that at least one person on the spectrum would serve on the IACC, to date, two anti-cure individuals (one of them Ne'eman) serve and to date not one pro-cure autistic has been appointed to the IACC or allowed any input on how government research should be funded. This also includes Stephen Shore (the other autistic IACC member) and John Robison (also opposed to curing autism) being able to make decisions on which government projects should be funded, though Shore's doctorate is in special ed and not in a scientific discipline and Robison never even completed high school. Not one pro-cure autistic, to my knowledge, has ever been allowed to review government studies, which should have, according to the law, as its intention to ultimately find a cure for autism.

Ne'eman goes further to state:

Many self-advocates also find the language of the act offensive and out of step with the mainstream of disability policy.

If anyone is out of the mainstream of autism policy, it is Ne'eman and ASAN themselves, as most rational persons who are stakeholders believe autism is a disability and want it cured. If this were not the case, congress never would have passed the combating autism act in the first place and Bush would not have signed it into law.

So far, the combating autism act has not done much good or helped anyone, let alone finding a cure for autism. My guess is it will be passed though.

I would have been intrigued by Ne'eman's silence, given his appointment to the IACC. I guess that is no longer an issue and I now have the answer to the question of my previous post.


Anonymous said...

The problem with Ari Ne'eman and his definition of "self-advocates" is that people like Ari Ne'eman are the self advocates. Ari Ne'eman, Alex Plank, Katie Miller and other hypocrites who states that they want to help people, especially financially, but then spend thousands on college degrees, spend thousands attending conferences and so on and so forth. Basically, rich, white barely disabled "autistic" people who have zero experience with SSI, Medicaid and poverty are making decisions for more disabled people who actually live of SSI checks, are lower-middle class and so on and so forth. Why should someone with an art degree from MICA, who is barely "autistic" have any voice for people who actually have Autism? Why should a barely "autistic" Yale Law student have any say about disabled people who get SSI checks and live in Section 8 housing? They're just typical politicans, just like Obama making decisions for disabled people on SSI checks though he is not a disabled person getting an SSI check. Typical politicians: I just laugh at them because they just spout facts but have no idea how the system works because they haven't lived it: just their happy, maybe-a-few-bad-things-happened $75,000+ college degree, white lives.

Anonymous said...

The problem with Ne'eman and his disability ideal is the reality of most people with disabilities: living off SSI checks, unable to afford a $75,000+ degree in art, philosophy or film studies, unable to work, dependent on parental support. You have a few who are lucky and whose parents pay for and support everything (you can't earn a college degree and live of SSI without parental support), those who work "under the table," which is illegal. What next: pass a law so the disabled could work under the table without being accused of fraud? That wouldn't be fair to the non-disabled tax payers: those who pay for your SSI check. Autism is a very disabling condition, perhaps more disabling then being in a wheelchair because the mind functions differently. I see people in wheelchairs hold down jobs more easily than autistic people since Autism, by its definition, would cause difficulty in attending college and having a job since they often cannot function in a "neurotypical" environment. And it isn't quite as easy to build a ramp to accommodate an autistic person: ASAN just needs to face that reality.

Ender said...

Anon: Who should make the decisions for autistic people? I get that Ari is speaking for too many (in fact I think I have told him that to his face, well to his email account before), but who does speak for severely autistic people? Around most Asperger's people I know, myself included (I can show you my papers Jon) his opinions are quite popular, and many aspies do accept him speaking for them. The problem is he reaches to far, but no one realitically speaks for the people he is reaching to far to speak for. It is a problem all around.