The dreaded Senate hold strikes again, this time to an autism advocate

[KamaAina]

http://www.nytimes.com/2010/03/28/health/policy/28autism.html

When President Obama nominated Ari Ne’eman to the National Council on Disability, many families touched by autism took it as a positive sign. Mr. Ne’eman would be the first person with the disorder to serve on the council....

A hold has been placed on Mr. Ne’eman’s nomination, which requires Senate confirmation. Whether the hold is related to the criticism of Mr. Ne’eman (pronounced NAY-men) and what it might take to lift it is unclear....

He founded his self-advocacy organization, which has grown to have several chapters across the country, in 2006, and he served on New Jersey’s Special Education Review Commission, where he wrote a report calling for legislative action to end the use of aversives, restraint and seclusion on students with disabilities.

Mr. Ne’eman also became a critic of Autism Speaks, the largest advocacy group in the country, organizing protests last fall over a fund-raising video.

Now to find out which Senator would do this at the behest of Autism Speaks, or as i call it, "Neurotypicals Speak for Autism". It could well be a Dem. It might even be Franken: Autism Speaks founder Bob Wright was chairman of Franken's former employer, NBC, for years.

Memo to Obama: Why no recess appointment?

edit: A number of Autism Speaks' board members have donated to Specter. Thanks, Newsmeat!

[sharp_stick]

1. At the very least

holds need to be public, we should know who is placing the hold and why they are doing it.

Even better, they should get rid of this shit all together. No wonder nothing ever gets fucking done in the Senate.

[earth mom]

2. Good! I'm glad someone is trying to stop this guy. He is NOT the right person for the position!

What in the hell is Obama thinking?!!! :wtf:

Parents and care givers are proving EVERY DAY that there are ways to recover to a degree from Autism.

And I'm not saying "cure" Autism completely, but make those with Autism able to function better.

I am pissed off that Obama is putting a bandaid on such a huge gaping wound!!! :grr:

Obama is NOT winning any friends or voters in the Autism community with this idiotic move!

[KamaAina]

3. Well, I'll agree that I would have been better

:-)

I'll even agree that Ari can at times be somewhat abrasive and confrontational (a dear friend of mine who is also a prominent autism self-advocate calls him a "pain in the Aspie"!) He has, however, compiled an impressive advocacy resume, the more so considering he's still an undergrad.

And this is an historic opportunity to have a person with autism, not a parent, teacher or psychiatrist, in a position of power, with direct access to policymakers. And if this hold stands, we could lose it (unless Obama gives up and turns to me instead :-) ).

[earth mom]

4. Sorry, but I don't want someone in that job who is turning his back on what will help

children recover somewhat from Autism so that they can lead more productive lives.

I'm all for you having the job instead if you do not smear parents by calling them "curebies" and do not try to stop parents from helping their kids get better by using alternative treatments.

[KamaAina]

5. I have not "recovered" from autism

and I'm at my full-time job right now.

[Name removed]

10. Deleted message

Message removed by moderator. Click here to review the message board rules.

[earth mom]

14. FYI-Name calling is against DU rules. nt

[earth mom]

15. That's great for you but I'm not talking about you. I'm talking about kids that can't communicate,

can't speak, who will probably never hold a job unless they are helped to recover as much as possible.

I'm talking about kids who will probably have to be cared for like infants even when they are adults unless they are given alternative treatments.

There are ways to help these children so that they can function in the world and can maybe-just maybe-become productive members of society and take care of themselves to a degree.

What I object to is that your friend Ari is pushing the idea that these kids don't need help when they do.

I don't think Ari is the right advocate for these kids because he does NOT have the same kind of autism as they do and he can NOT relate or understand what they and their families are going through.

[Pithlet]

6. He absolutely is right for this position.

His stance on cure research may be wrong, but his experience on accessibility is right. That is what the position is, and he is right for the job. It has nothing to do with funding or research for a cure. So why block this position? It is political and nothing more, and it is a shame.

[Feron]

7. He's exactly the person this autistic would like to see there.

You speak for yourself and not for the autistic community.

Parents and caregivers have made any discussion of autism all about them and transforming their autistic child into a NT one. Autistic people, and especially ones that can't "pass", are considered non-persons in our society. Burdens, objects to be pitied, and people that are okay to kill if we can't function like a NT. That autistic people are inherently broken and in need of fixing. And any autistic person that isn't self-loathing and yearning to be NT is either lying or messed up.

Autistic people can and do speak for themselves and do not need a parent, caregiver, or professional to speak for them. But all too often when autistic people do speak up, they are then ignored, patronized, and shoved aside.

True autistic people can have the potential to become better functioning, but that's not the point. You're so wrapped up in what you want that you don't even consider what an autistic person may want.

Instead of forcing conformity, I'd be nice if these so-called advocacy groups would promote acceptance instead. It's one thing to encourage and develop needed skills, it's quite another to put your child through the wringer in hopes that one day your child will be able to fake normalcy.

Certainly parents, professionals, and caregivers should have a seat at the table, however autistic people should have the predominant voice. It's our lives and community after all.

I may not always agree with Ari, but it's nice to see an autistic person that isn't a self-hating milquetoast token get a shot at a seat. Saying that an autistic person has the same worth as a NT person is unfortunately radical in our society.

[KamaAina]

11. Welcome, fellow spectrumite!

:hi:

I lived in NOLA briefly around 1990. In fact, that was where I rediscovered my identity, the A-word having been dropped in childhood.

[earth mom]

16. Sorry, but parents & caregivers are trying to help their autistic children

into becoming the best THEY can be.

There is a huge misunderstanding on this thread (and so many others on DU in the past) as to why parents/caregivers are trying to help their kids.

It's NOT about parents/caregivers "curing" their kids so they can turn them into a neurotypical children. The "curebie" smear is nothing but bullshit!

What it's about is bringing these children to a level where he/she can take care of themselves and not have to be cared for as an infant for the REST OF THEIR LIVES!

Don't you realize that most of these children can't wipe their own rear ends, let alone hold a job when they grow up?

Why the hell would anyone NOT expect parents/caregivers try to help their kids recover to a degree where they can function somewhat in the real world?! :wtf:


I hear what you are saying and agree that acceptance of autistic people is a worthy goal.

BUT

Helping these kids be the best they can possibly be comes FIRST.

[Name removed]

8. Deleted message

Message removed by moderator. Click here to review the message board rules.

[Odin2005]

9. CALL FRANKEN RIGHT FUCKING NOW!!!

:grr:

[KamaAina]

12. You think it's him?

He did work for NBC, whose longtime chairman, Bob Wright, founded Autism Speaks/Neurotypicals Speak for Autism.

But my thinking centers around Specter, who, as mentioned above, has received donations from several NSFA board members, none of whom live in PA.

[Odin2005]

13. You might be right, I was going off without thinking.