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Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Marcia - 03-28-2010 09:43 PM
I'm posting this thread for adriant.esq as he's keen to have us see this, but doesn't know how to post a new thread.
http://www.nytimes.com/2010/03/28/health/policy/28autism.html
Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism
By AMY HARMON
Published: March 27, 2010
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.
But he has since become the focus of criticism from other advocates who disagree with his view that society ought to concentrate on accepting autistic people, not curing them.
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.
But Mr. Ne’eman, the 22-year-old founder of the Autistic Self-Advocacy Network, seems to be a lightning rod for a struggle over how autism will be perceived at a time when an estimated 1 in 100 American children and teenagers are given such a diagnosis.
Mr. Ne’eman is at the forefront of a growing movement that describes autism as a form of “neurodiversity” that should be embraced and accommodated, just as physical disabilities have led to the construction of ramps and stalls in public restrooms for people with disabilities. Autism, he and others say, is a part of their identity.
But that viewpoint, critics say, represents only those on the autism spectrum who at least have basic communication skills and are able to care of themselves.
“Why people have gotten upset is, he doesn’t seem to represent, understand or have great sympathy for all the people who are truly, deeply affected in a way that he isn’t,” said Jonathan Shestack, a co-founder of the advocacy group Autism Speaks, whose mission is to help finance research to find a cure.
Mr. Obama’s seven other nominees to the council were confirmed this month. But parliamentary procedure in the Senate allows one or more members to prevent a motion from reaching the floor for a vote by placing an anonymous hold on the action, which an official with knowledge of the proceedings said had been done in Mr. Ne’eman’s case.
The hallmark of autism is impaired social interaction, but the disorder can take an array of forms. Some people may hurt themselves or be unable to speak. Others may be hyperarticulate but unable to parse body language or facial cues. Some may have cognitive disabilities; others may have savant skills.
Mr. Ne’eman declined to be interviewed, citing the pending action on his nomination. But in previous interviews with The New York Times and other publications, he has argued that those most severely affected by autism are the ones who benefit least from the pursuit of a cure, which he suggests is unattainable anytime soon. Instead, he says, resources should be devoted to accommodations and services that could improve their quality of life.
Historically, the kind of genetic research supported by many parents of children with autism, Mr. Ne’eman has said, has been used to create prenatal tests that give parents the ability to detect a fetus affected by a particular condition, like Down syndrome, so that they can choose whether to terminate the pregnancy.
“We just think it makes more sense to orient research to addressing health problems or helping people communicate rather than creating a mouse model of autism or finding a new gene,” Mr. Ne’eman has said.
A senior majoring in political science at the University of Maryland, Baltimore County, Mr. Ne’eman himself has a diagnosis of Asperger syndrome, a form of high-functioning autism.
Mr. Ne’eman, who grew up in East Brunswick, N.J., has said his condition caused him to be bullied in high school. His social anxiety was so great, he sometimes picked at his face until it bled. He was eventually transferred to a school for students with developmental disabilities.
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.
But the split among autism advocates, suggests Lee Grossman, director of the Autism Society of America, may simply reflect the unmet needs of a growing population, for both research into potential treatments and for programs to support jobs and independent living.
“We have this community out there frustrated and bewildered and reaching out for any assistance, and that makes us battle-hardened,” Mr. Grossman said. “We need to reframe the discussion. From our perspective, it’s great to have a person on the spectrum being nominated to this committee.”
A version of this article appeared in print on March 28, 2010, on page A16 of the New York edition.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-28-2010 10:05 PM
the real holdup on this nomination is the republican holdout,in that they refuse to cooperate with anything that President Obama wants. They are the ones who have taken up autsqueaks banner. Doesnt mean they believe in autsqueaks at all. They use anyone who objects, to accomplish their goals.
talk about nasty trolls, they are it
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-28-2010 10:13 PM
It does bring Ne'emans views to the forefront , which is good for the cause.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - windy - 03-28-2010 10:40 PM
Obstructionists!
Against, instead of For...
(sigh)
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-28-2010 11:02 PM
they are only against because they are not the party in power. they do not represent the people (neither do most dems.)just their own re-election bids.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Ruby2010 - 03-28-2010 11:12 PM
Oh. I think that person has been personally emailing me the last couple weeks with advice on advocacy issues I am having at my school. Cool! Maybe we should write to our senators and show our support?
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-28-2010 11:16 PM
that would help!
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Ruby2010 - 03-28-2010 11:22 PM
I just wrote both of mine!
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - adriant.esq - 03-28-2010 11:51 PM
I am grateful to Marcia for setting up this thread. I picked up the story by Google Alert and thought you guys and gals might wish to discuss it, especially those in USA. I am not as familiar with US politics as I am with UK politics, but I have just retired from working in a government post, so I am well familiar with the dirty tricks that go on in Committees. On the surface it seems very wrong that a valid representative can be so barred; but, I agree with skyblue1 - the story is bringing Ari Ne'eman to a far wider audience than would have been the case if he had been accepted 'on the nod'. I hope something really good comes out of this for the auties and aspies in USA.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-28-2010 11:55 PM
thanks for the story , for some reason I had thought he was already in.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Ruby2010 - 03-28-2010 11:59 PM
Here is a web page to help those of you who are Americans in locating your senators...
http://www.senate.gov/general/contact_information/senators_cfm.cfm
There have got to be millions of people in the US who take the stance that we do, if we organize them we can give the senate hell! Let's do it!
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-29-2010 12:33 AM
Ruby2010 Wrote:
Here is a web page to help those of you who are Americans in locating your senators...
http://www.senate.gov/general/contact_information/senators_cfm.cfm
There have got to be millions of people in the US who take the stance that we do, if we organize them we can give the senate hell! Let's do it!
http://www.senate.gov/general/contact_information/senators_cfm.cfm
There have got to be millions of people in the US who take the stance that we do, if we organize them we can give the senate hell! Let's do it!
just like we want republicans to vote for him, we need democrats to stand up for him.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Ruby2010 - 03-29-2010 12:36 AM
I've emailed Senators Stabenow and Levin for Michigan, and will be calling and writing letters tomorrow. I've also posted a request on another aspergers forum, and I sent out a mass email to my school's disabilities club. Unfortunately our autism group is a branch of autism speaks, but we'll make do without them. Mr. Ne'eman deserves our support!
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-29-2010 12:40 AM
he will of course be working for other causes ,also, if he gets in. But he is the perfect representative for us
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - windy - 03-29-2010 12:52 AM
skyblue1 Wrote:
he will of course be working for other causes ,also, if he gets in. But he is the perfect representative for us
I had thought he was already in as well...
(I recall other nominees were blocked, but cannot think of whom...anyone know where I can find a list?)
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-29-2010 01:03 AM
Senate gone, Obama seats nominees
President Barack Obama will bypass the Senate and for the first time since taking office unilaterally install 15 nominees to his adminstration, including two members of the National Labor Relations Board, in a move that infuriated Republicans.
Obama used his executive power to install Craig Becker, who was blocked by a GOP filibuster last month, and Mark Pearce, whom Republicans also oppose because of his ties to labor unions.
In announcing the recess appointments Saturday afternoon, Obama presented his decision as a last-resort move forced on him by the Senate Republicans. The president issued a statement in which he blamed “partisan politics” for bottling up 77 of his nominees.
“The United States Senate has the responsibility to approve or disapprove of my nominees. But if, in the interest of scoring political points, Republicans in the Senate refuse to exercise that responsibility, I must act in the interest of the American people and exercise my authority to fill these positions on an interim basis,” Obama said in the statement.
In addition to Becker and Pearce, nominees include four appointments to the Equal Employment Opportunity Commission and two each to the Department of Homeland Security, Commerce Department, Treasury Department and the office of the U.S. Trade Representative.
“Most of the men and women whose appointments I am announcing today were approved by Senate committees months ago, yet still await a vote of the Senate,” Obama said in his statement. “At a time of economic emergency, two top appointees to the Department of Treasury have been held up for nearly six months. I simply cannot allow partisan politics to stand in the way of the basic functioning of government.”
Senate Republican leader Mitch McConnell (R-Ky.) criticized Becker’s appointment in a statement, calling it “yet another episode of choosing a partisan path despite bipartisan opposition. . . Additionally stunning is the administration’s decision to recess appoint two Democrat nominees to the NLRB and leave the Republican behind. This is a purely partisan move that will make a traditionally bipartisan labor board an unbalanced agenda-driven panel.”
Obama did not install Republican Brian Hayes, the other pending nominee to the five-member labor board, which some thought he might do to take the partisan edge off the Democratic appointments.
The White House tried to pre-empt the GOP criticism by outlining a detailed defense of the president’s decision. Officials even included the number of days the 15 nominees combined have been waiting: “3204 days or almost nine years,” according to the White House release.
The administration was also quick to point out that Obama’s predecessor, George W. Bush, had used the same presidential prerogative. Obama’s 15 recess appointments Saturday do not exceed Bush’s total at the same point into his first term, the White House noted.
Democrats applauded the move.
“Nominees under President Obama have fared worse than others in recent memory. Regrettably, Senate Republicans have dedicated themselves to a failed strategy to cripple President Obama’s economic initiatives by stalling key administration nominees at every turn,” Senate Majority Leader Harry Reid (D-Nev.) said in a statement. “President Obama has shown that he is serious about getting the right team in place to create jobs and protect the American work force, and I support his decision."
Pages
Read more: http://www.politico.com/news/stories/0310/35111.html#ixzz0jW0Z0WQ4
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Ruby2010 - 03-29-2010 01:05 AM
What does all that mean?
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - windy - 03-29-2010 01:08 AM
Wow, hot off the presses - article dated march 28th 2010.
I remembered the treasury nominee,,..
this was also from your linked article... was mentioned
“At a time of economic emergency, two top appointees to the Department of Treasury have been held up for nearly six months. I simply cannot allow partisan politics to stand in the way of the basic functioning of government.”
Read more: http://www.politico.com/news/stories/0310/35111.html#ixzz0jW1fLOTl
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Shnoing - 03-29-2010 11:23 AM
Thanks for posting this.
I even worked out what obo means
.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - crickey96 - 03-29-2010 12:57 PM
I was seriously disappointed when I heard of Ari's nomination being put on hold. I was excited to see Ari achieve such a position... But now, because of politics, the best possible "Spectrum Spokesperson" we could ever hope for is not going to be given a voice... this is exactly why I don't like politics!
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Shoneh - 03-29-2010 03:00 PM
I did some research about this but I wasn't able to find out who is placing the hold. I'm not clear on whether it's that they're anti-neurodiversity or just anti-Obama. Whichever it is, it's just not right and not fair. If this was the first African-American or the first woman appointed to a position, no one would be making these types of objections. Sonia Sotomayor can cross the line and say that her race and gender make her a better judge than a white male, and she gets confirmed with bipartisan support. Yet, if Ari Ne'eman simply says that autistics should have equal rights, the same as neurotypicals, then it's a problem. It's a clear double standard.
If we can't figure out who's behind this, then we should all make phone calls or write letters to our senators to express our support for his confirmation.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Gareth - 03-29-2010 06:39 PM
Autism speaks behind it - seems about right.
In other news, "blackness speaks" recently protested the appointment of a black man to an anti-racism committee.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-29-2010 06:44 PM
Gareth Wrote:
Autism speaks behind it - seems about right.
In other news, "blackness speaks" recently protested the appointment of a black man to an anti-racism committee.
In other news, "blackness speaks" recently protested the appointment of a black man to an anti-racism committee.
LOL.......
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-29-2010 07:08 PM
Ari Ne’eman and the Controversy Over An Autism Cure
Claudia Kalb
Last week, I called attention to a candid and illuminating memoir about autism in Harper’s Magazine. The piece, as I pointed out, is refreshingly devoid of controversy. But that is rare in the world of autism, as this story in Sunday’s New York Times about Ari Ne’eman, the founder of the Autistic Self-Advocacy Network, makes clear. Last December, President Obama nominated Ne’eman to be a member of the National Council on Disability. Ne’eman, 22, and his supporters—who include other people on the autism spectrum disorder—were thrilled. His critics were not. Charges: he’s too young and inexperienced, he’s out of touch with the most profoundly affected on the spectrum, and he doesn’t support the hunt for a cure. Now, a hold has been placed on Ne’eman’s Senate confirmation—he would have been the first person with autism to serve on the Council—though it is unclear why. Ne’eman, as the Times points out, is a “lightening rod” for a dispute over how autism should be perceived and treated.
Ne’eman’s viewpoint about a cure is indeed surprising. In a profile I wrote about the college student last year, Ne’eman talked about his concerns that a focus on genetic research would lead to a prenatal test for autism, which might one day mean that people like him would cease to exist. Ne’eman, whose organization aims to “advance the principles of the disability rights movement,” is on the Asperger’s end of the autism spectrum. He can talk, read, write, look you in the eye, and have high-level conversations with high-level people. Rather than try to fix autistic people, he says, society should accept their differences and help people on the spectrum function better and live more independently.
Parents whose kids are severely affected by the disorder want autism to go away for good. At the very least, they want their children—many of whom are incapable of feeding themselves and using the toilet—to get better. Ne’eman, they charge, can’t possibly understand this and he shouldn’t be appointed a representative for the entire spectrum. The National Council on Disability, however, isn’t interested in genetic research; it’s purpose is to “promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.” This is exactly the kind of dry, laborious and important work that gets Ne’eman so excited. Opposing his nomination won’t get anybody closer to a cure; instead, it could deny a passionate advocate the unique opportunity to lobby for autism rights and opportunities at the very highest levels.
http://blog.newsweek.com/blogs/thehumancondition/archive/2010/03/29/ari-ne-eman-and-the-controversy-over-an-autism-cure.aspx
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Greginjersey - 03-29-2010 07:54 PM
well hopefully president obama with his cabinet staff and democrats can pass the on hold decision automatically to allow it to come to pass like the health care bill passed I mean it was
president obama's decision to appoint Ari Ne'eman to the post so... it should be the president's final call on his decision whether to allow it or let it be and fail / falter
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Ruby2010 - 03-29-2010 10:43 PM
I wonder if I can write to the president, too... Be sure to contact your senators, they work FOR YOU and it only takes a moment. I have some connections with the president's grassroots movement so maybe I can use those lines of communication, too. We can't take this quietly.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Gareth - 03-30-2010 01:20 PM
A thought:
Could none-US citizens write to congress too, citing international respect (or lack thereof) for america?
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-30-2010 02:49 PM
Gareth Wrote:
A thought:
Could none-US citizens write to congress too, citing international respect (or lack thereof) for america?
Could none-US citizens write to congress too, citing international respect (or lack thereof) for america?
suppose so , couldnt hurt
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-30-2010 03:02 PM
March 29, 2010
Ari Ne'eman Nomination to National Council on Disability on Hold
By Kim Stagliano
The New York Times reports HERE that Ari Ne'eman's nomination to the President's National Counctil on Disability is on hold. When the autism community learned that Ari Ne'eman, a 22 year old man diagnosed with Asperger's syndrome at age 12, had been nominated to represent the autism community, questions arose about his willingness and ability to speak for the broad spectrum of disability within the community.
Mr. Ne'eman is vocal advocate for self-advocacy. I know of no one opposed to self-advocacy for those who are able, despite the cries within the Neurodiversity community that we in the treatment community are "anti-autism." The reality is that many of our loved one can not self-advocate due to the severity of their autism. We use treatments in order to elevate our children's functioning to a place where they too can self-advocate. We bristle when we're told that our children do not deserve treatments and research that could move them "up" the spectrum. Mr. Ne'emans organization, ASAN states:
Research priorities should focus on areas that have the most potential to improve the daily lives of Autistic people, such as communication and assistive technology, best practices in providing services and supports, and educational methodologies. Health care disparities need to be remedied and beneficial therapies made more widely available; however, the use of scientifically unproven treatments and those that focus on normalization rather than teaching useful skills should be discouraged.
"Normalization" for many of our children means the ability to use the toilet, eat and digest food, remain safe in public and much more, all related to survival, quite frankly.
In fact, the organization that has helped put autism onto the "mainstream" map, thus giving Mr. Ne'eman his platform, was launched not because of a bright pre-teen who was able to communicate, but a severely affected toddler who was seriously ill and still needs treatment every day, young Christian, grandson of Bob and Suzanne Wright, and son of Age of Autism contributor Katie Wright.
Do the highest functioning with the community have a right to dictate the services and research that should be available for their less fortunate "peers?" I don't think so.
I can't imagine vocally advocating against corporate employment training or college social skills and living support programs for students with autism simply because my child may never attend college or hold an independent, paying job. I feel no threat from the high functioning autism and Asperger's community - in fact, I look to them as beacons of hope as to what my children might someday achieve. When a self-appointed spokesperson speaks out against the care my children need, I worry about his ability to represent the community. And I'm not alone, as you can read in the New York Times article.
Meanwhile, a nationally known autism advocate with Asperger's, John Elder Robison, author of Look Me in The Eye , has said that while he does not need a cure, he understands how more severely affected people with ASD may indeed require a different degree of care and treatment. His keen logic allows him to see that my children need far more than a high functioning adult with Asperger's Syndrome. In fact, Robison is now working with Autism Speaks to advance a promising new treatment called Transcranial Magnetic Stimulation that has already proven to successfully ameliorate some of the less beneficial traits associated with his Asperger's, while retaining the strengths.
Is Mr. Ne'eman able, within the parameters of his Asperger's, to see the larger picture of disability within the commiunity and act on behalf of those who do not share his level of functioning? This is the concern throughout the community.
In January, we ran a posted a letter HERE from Autism Action Network to Mr. Ne'eman asking him to clarify his views on research and treatment for autism, and his response. In short, he declined to asnwer until after his appointment was complete.
From the New York Times
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.
Ari Ne'eman would be the first person with autism on the National Council on Disability.
But he has since become the focus of criticism from other advocates who disagree with his view that society ought to concentrate on accepting autistic people, not curing them.
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.
But Mr. Ne’eman, the 22-year-old founder of the Autistic Self-Advocacy Network, seems to be a lightning rod for a struggle over how autism will be perceived at a time when an estimated 1 in 100 American children and teenagers are given such a diagnosis.
Mr. Ne’eman is at the forefront of a growing movement that describes autism as a form of “neurodiversity” that should be embraced and accommodated, just as physical disabilities have led to the construction of ramps and stalls in public restrooms for people with disabilities. Autism, he and others say, is a part of their identity.
But that viewpoint, critics say, represents only those on the autism spectrum who at least have basic communication skills and are able to care of themselves.
“Why people have gotten upset is, he doesn’t seem to represent, understand or have great sympathy for all the people who are truly, deeply affected in a way that he isn’t,” said Jonathan Shestack, a co-founder of the advocacy group Autism Speaks, whose mission is to help finance research to find a cure.
Mr. Obama’s seven other nominees to the council were confirmed this month. But parliamentary procedure in the Senate allows one or more members to prevent a motion from reaching the floor for a vote by placing an anonymous hold on the action, which an official with knowledge of the proceedings said had been done in Mr. Ne’eman’s case.
The hallmark of autism is impaired social interaction, but the disorder can take an array of forms. Some people may hurt themselves or be unable to speak. Others may be hyperarticulate but unable to parse body language or facial cues. Some may have cognitive disabilities; others may have savant skills.
Mr. Ne’eman declined to be interviewed, citing the pending action on his nomination. But in previous interviews with The New York Times and other publications, he has argued that those most severely affected by autism are the ones who benefit least from the pursuit of a cure, which he suggests is unattainable anytime soon. Instead, he says, resources should be devoted to accommodations and services that could improve their quality of life.
Historically, the kind of genetic research supported by many parents of children with autism, Mr. Ne’eman has said, has been used to create prenatal tests that give parents the ability to detect a fetus affected by a particular condition, like Down syndrome, so that they can choose whether to terminate the pregnancy.
“We just think it makes more sense to orient research to addressing health problems or helping people communicate rather than creating a mouse model of autism or finding a new gene,” Mr. Ne’eman has said.
A senior majoring in political science at the University of Maryland, Baltimore County, Mr. Ne’eman himself has a diagnosis of Asperger syndrome, a form of high-functioning autism.
Mr. Ne’eman, who grew up in East Brunswick, N.J., has said his condition caused him to be bullied in high school. His social anxiety was so great, he sometimes picked at his face until it bled. He was eventually transferred to a school for students with developmental disabilities.
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.
But the split among autism advocates, suggests Lee Grossman, director of the Autism Society of America, may simply reflect the unmet needs of a growing population, for both research into potential treatments and for programs to support jobs and independent living.
“We have this community out there frustrated and bewildered and reaching out for any assistance, and that makes us battle-hardened,” Mr. Grossman said. “We need to reframe the discussion. From our perspective, it’s great to have a person on the spectrum being nominated to this committee.”
Below is Ari Ne'eman's response to the letter sent to him by the Autism Action Network, with the letter after his response:
From: Ari Ne'eman
Subject: Re: Request for clarification of your views
To: "John Gilmore"
Date: Friday, January 15, 2010, 10:48 AM
Hello John,
I apologize for the delay in responding. I was asked recently by the White House to avoid any further public appearances and speaking to the media until after my confirmation process is complete and I was checking with them as to whether or not it would be acceptable for me to respond to the questions you have sent. Regrettably, they've asked that I avoid answering any questionnaires not provided to me by Senate offices as part of the confirmation process. As a result, I cannot submit my responses right now. With the exception of an article I submitted early last year (before I knew about the nomination) for the upcoming issue of Disability Studies Quarterly, I will not be publishing any writing until after the confirmation process completes. I mention the DSQ piece now because I don't want you to think I'm not being honest with you when it comes out.
However, I would be very interested in providing a response for distribution to your members after my confirmation process is complete. I would see it as a welcome opportunity to communicate some areas of shared belief and advocacy and explain, in a polite, respectful way, the reasons for some of the differences in opinion that exist between our perspectives. Would that be alright? Feel free to e-mail or call me if you have any questions or queries.
Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
Dear Mr. Ne'eman,
Below is the text of a letter that you will receive as a hard copy shortly from the Autism Action Network (formerly ACHAMP). We are seeking clarification from you on some of your statements and opinions prior to your confirmation. We look forward to your response.
Sincerely,
John Gilmore
Executive Director Mr. Ari Ne’eman
President
Autistic Self Advocacy Network
c/o Karen Buford
1025 Vermont Avenue, NW, Suite 300
Washington, DC 20005
January 6, 2010
Dear Mr. Ne’eman,
Congratulations on your recent nomination to the National Council on Disability. The Autism Action Network applauds your work on behalf of people on the autistic spectrum to end the use of aversives and to increase support for people with autism in the community. You have made public statements, however, that have cause some measure of concern among our members. The vast majority of the members of our organization are parents or caregivers for low-functioning minor children with an autism diagnosis. Consequently, issues that affect low-functioning people with autism and their families are our primary concern. We would like clarification of your positions on a number of crucial policy issues to assist us in determining whether we will support your nomination. It is our understanding that you believe that a cure for autism is neither desirable nor should it be a federal research priority, and that too much research funding is used for finding the causes and potential cures and treatments for autism. For example on June 10, 2008 on Good Morning America your said, “We do not think to aim for a cure is the right approach to take.” Would you please clarify for us what your position is on the need for research to find the causes, treatments and possible cures for autism, and what levels of research funding you believe are appropriate?
Would you please clarify your position on health insurance reform for people with autism? There are a variety of bills at the state and federal level that seek to end health insurance discrimination against people with autism. Would you please identify specific autism health insurance reform legislation that you endorse? And would you please provide us what the minimum services and levels of coverage you believe are necessary?
According to your website you received a diagnosis of Asperger’s Syndrome at the age of twelve, you also appear to be a very articulate young man attending college and launching a successful career. Please explain how your circumstances equip you to understand and represent low-functioning people with autism and their caregivers?
The CDC recently released new epidemiology that show the prevalence of autism is now 1 in 110 among eight-year olds born in 1996 which represented a 57% increase over the number of eight year olds born in 1994. Do you think the real rate of autism is increasing or not?
We welcome your prompt reply, which will be distributed to our members. Please do not hesitate to contact me if you have any questions.
Sincerely,
Autism Action Network
Kim Stagliano is Managing Editor for Age of Autism.
http://www.ageofautism.com/2010/03/ari-neeman-nomination-to-national-council-on-disability-on-hold-.html?cid=6a00d8357f3f2969e201310ff3ece6970c
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - q w e r t y - 03-30-2010 03:07 PM
I will try to write a letter this weekend. I don't know much about him, but if he's a critic of Autism Speaks then he is probably closer to who I'd like as a representative than someone else. Edit: Mail to senators is SLOW though, since they have to make sure there are no bombs or anything in it, and then they have to actually read all of it.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-30-2010 03:28 PM
e-mails are better and cost less
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Shoneh - 03-30-2010 03:32 PM
Gareth Wrote:
A thought:
Could none-US citizens write to congress too, citing international respect (or lack thereof) for america?
Could none-US citizens write to congress too, citing international respect (or lack thereof) for america?
Under free speech, you can say whatever you want. I doubt that they'd give it as much weight as if it were someone who lives in their state, but there's nothing to lose.
On a different note, if I called the senators' offices and told them that I'm autistic, I wondered how many would be surprised that I can talk or think that I'm lying.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-30-2010 03:36 PM
Shoneh Wrote:
Gareth Wrote:
A thought:
Could none-US citizens write to congress too, citing international respect (or lack thereof) for america?
Could none-US citizens write to congress too, citing international respect (or lack thereof) for america?
Under free speech, you can say whatever you want. I doubt that they'd give it as much weight as if it were someone who lives in their state, but there's nothing to lose.
On a different note, if I called the senators' offices and told them that I'm autistic, I wondered how many would be surprised that I can talk or think that I'm lying.
LOL@ last paragraph
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-30-2010 03:39 PM
the important thing is , there needs to be as many people as possible standing up for Mr. Ne`eman. To oppose those ranting against him. Support from anywhere is important.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Greginjersey - 03-30-2010 04:05 PM
Gareth Wrote:
A thought:
Could none-US citizens write to congress too, citing international respect (or lack thereof) for america?
Could none-US citizens write to congress too, citing international respect (or lack thereof) for america?
I would esp if it meant double or triple the usual responses received the more people who write and voice their opinion, concerns and feedback are more likely to be heard when it comes to important issues such as this
can you imagine the amount of mail that will come pouring in? 
if via postage and if by email it may be likely that their email server would crash due to the large volume of email responses
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-30-2010 04:16 PM
Greginjersey Wrote:
Gareth Wrote:
A thought:
Could none-US citizens write to congress too, citing international respect (or lack thereof) for america?
Could none-US citizens write to congress too, citing international respect (or lack thereof) for america?
I would esp if it meant double or triple the usual responses received the more people who write and voice their opinion, concerns and feedback are more likely to be heard when it comes to important issues such as this
can you imagine the amount of mail that will come pouring in? if via postage and if by email it may be likely that their email server would crash due to the large volume of email responses
^ QFT
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - christopherjustice - 03-30-2010 04:20 PM
Mr. Ne’eman (pronounced NAY-men)
bias report by Kim Stagliano
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-30-2010 05:31 PM
this is the link for direct responce to the whitehouse
http://www.whitehouse.gov/contact
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-30-2010 05:39 PM
christopherjustice Wrote:
Mr. Ne’eman (pronounced NAY-men)
bias report by Kim Stagliano
bias report by Kim Stagliano
In order to become more fully informed , it is important to see all sides.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - q w e r t y - 03-30-2010 06:09 PM
skyblue1 Wrote:
e-mails are better and cost less
I'm not sure they actually read their emails though. It's so easy to do that people will do it for the most inane reasons.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Ruby2010 - 03-30-2010 06:16 PM
I have gotten responses via email though. I worked for a political organization recently that canvassed requesting people contact their senators, and it is best to call and write letters, or even show up if you can (we got a few thousand people to show up at our senators office once, that was fun XD), followed last by email. I am going to write, call, and email, personally. SOMEONE will read it even if it's an email, but if you take the time to write a paper letter they are going to take it more seriously. Envelopes and stamps mean you mean business.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Ruby2010 - 03-30-2010 06:18 PM
"I will try to write a letter this weekend. I don't know much about him, but if he's a critic of Autism Speaks then he is probably closer to who I'd like as a representative than someone else. Edit: Mail to senators is SLOW though, since they have to make sure there are no bombs or anything in it, and then they have to actually read all of it. "
I am in a hurry and need to get out the door for class, but you can find a little mini bio thing for him on the autistic self advocacy network webpage.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - ericj1985 - 03-30-2010 07:40 PM
I highly doubt that Mr. Ne'eman or anyone else on the so-called "higher" end of the spectrum opposes any therapeutic methods which are used to help autistic children with activities of daily living and coping skills. This is not the same as "normalization" and not the same as a cure. As Mr. Ne'eman himself stated, the focus should be on improving the quality of life for all autistic spectrum individuals. I'm baffled as to how anyone could construe that as a bad thing.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Ruby2010 - 03-30-2010 09:32 PM
^That is precisely correct, as I understand it.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - piePIEpie - 03-30-2010 09:47 PM
At least Obama seems to be on our side.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Gareth - 03-31-2010 12:10 AM
I find it very sad that the "autism action network" (wow, wonder what kind of action they support......) believes that an adult on the spectrum is less suited to represent autistics than an NT - that could be a major point to raise.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 03-31-2010 12:50 AM
a major , major point ^
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - q w e r t y - 03-31-2010 01:00 AM
ericj1985 Wrote:
I highly doubt that Mr. Ne'eman or anyone else on the so-called "higher" end of the spectrum opposes any therapeutic methods which are used to help autistic children with activities of daily living and coping skills. This is not the same as "normalization" and not the same as a cure. As Mr. Ne'eman himself stated, the focus should be on improving the quality of life for all autistic spectrum individuals. I'm baffled as to how anyone could construe that as a bad thing.
I oppose a lot of the methods that are used to "help" autistic children. Which doesn't mean I want nothing to be done.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - ericj1985 - 03-31-2010 01:25 AM
q w e r t y Wrote:
ericj1985 Wrote:
I highly doubt that Mr. Ne'eman or anyone else on the so-called "higher" end of the spectrum opposes any therapeutic methods which are used to help autistic children with activities of daily living and coping skills. This is not the same as "normalization" and not the same as a cure. As Mr. Ne'eman himself stated, the focus should be on improving the quality of life for all autistic spectrum individuals. I'm baffled as to how anyone could construe that as a bad thing.
I oppose a lot of the methods that are used to "help" autistic children. Which doesn't mean I want nothing to be done.
Certainly there are a lot of controversial therapies out there, and these should be evaluated on a case by case basis as to whether or not they serve any benefit. My major point being that I think it is grossly inaccurate for anyone to portray Aspies/HFAs as trying to prevent those on the lower end of the spectrum from receiving services that may assist them with basic life skills such as toiletry, eating, etc. People should not be confused into thinking that opposition to normalization and cure means opposition to quality-of-life issues. By the way, I use the terms "higher" and "lower-functioning" very carefully because I think they tend to cause even more division and negative feelings within the autism community.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - q w e r t y - 03-31-2010 01:49 AM
Quote:
Certainly there are a lot of controversial therapies out there,
Erm, the overall treatment of "classically autistic" children is abusive and demeaning. This is the rule, not the exception, and saying anything less than this is a huge disservice to those children. This is not somewhere that you can cut corners or play things down. Saying that there are "Oh yes there are certainly some controversial therapies" does not cut it in any situation.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - ericj1985 - 03-31-2010 02:02 AM
q w e r t y Wrote:
Quote:
Certainly there are a lot of controversial therapies out there,
Erm, the overall treatment of "classically autistic" children is abusive and demeaning. This is the rule, not the exception, and saying anything less than this is a huge disservice to those children. This is not somewhere that you can cut corners or play things down. Saying that there are "Oh yes there are certainly some controversial therapies" does not cut it in any situation.
I am not disagreeing with you. Just to be clear to everyone, I do not in any way condone or agree with behavior modification techniques and other such horrors. The point of my original post was more about general treatments for the individual, not treatments aimed at autism.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Ruby2010 - 03-31-2010 04:01 AM
"Erm, the overall treatment of "classically autistic" children is abusive and demeaning. This is the rule, not the exception, and saying anything less than this is a huge disservice to those children. This is not somewhere that you can cut corners or play things down. Saying that there are "Oh yes there are certainly some controversial therapies" does not cut it in any situation. "
Are you even sure that the nominee in question disagrees with you, or are you just arguing for the sake of arguing and attaching even more controversy to the nominee needlessly?
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - q w e r t y - 03-31-2010 04:16 AM
ericj1985 Wrote:
q w e r t y Wrote:
Quote:
Certainly there are a lot of controversial therapies out there,
Erm, the overall treatment of "classically autistic" children is abusive and demeaning. This is the rule, not the exception, and saying anything less than this is a huge disservice to those children. This is not somewhere that you can cut corners or play things down. Saying that there are "Oh yes there are certainly some controversial therapies" does not cut it in any situation.
I am not disagreeing with you. Just to be clear to everyone, I do not in any way condone or agree with behavior modification techniques and other such horrors. The point of my original post was more about general treatments for the individual, not treatments aimed at autism.
Okay, but you said...
"any therapeutic methods which are used to help autistic children with activities of daily living and coping skills."
And the people who advocate these "treatments" claim they do exactly that. If you really are opposed to this, you need to make it absolutely clear that you're opposed to it at all times, because these kinds of things are highly entrenched, and the people who are claiming that we're trying to stop treatment more often than not DO have these things in mind. Saying "I oppose a lot of the false treatments for autistic people that are in place now, but I recognize that some kind of treatment is usually necessary" communicates a very different message. This is not nitpicking either, because these kinds of ideas translate directly into the lives of other people.
I can absolutely accept that what you've just said is what you actually mean, but it's important not to try to tone this down just to try to stop people from misrepresenting you or people with similar viewpoints. Protip: People are going to try to misrepresent you anyway.
Ruby2010 Wrote:
Are you even sure that the nominee in question disagrees with you, or are you just arguing for the sake of arguing and attaching even more controversy to the nominee needlessly?
I was responding to ericj1985, who posted in this topic, and who I quoted. I don't consider trying to defend young children from abuse "arguing for the sake of arguing" either, and putting out statements like "I highly doubt that... (higher functioning autistics) opposes any therapeutic methods..." is going to, at the very least, ENABLE those kinds of things.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Ruby2010 - 03-31-2010 07:39 PM
And was there a reason to assume when eric, as a member of the autistic community and AFF, said "help" he meant anything but "help?" Why did you jump to the conclusion that when he said "help" he meant from the therapists point of view, and not OURS? That doesn't make any sense at all.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - ericj1985 - 03-31-2010 08:11 PM
Ruby2010 Wrote:
And was there a reason to assume when eric, as a member of the autistic community and AFF, said "help" he meant anything but "help?" Why did you jump to the conclusion that when he said "help" he meant from the therapists point of view, and not OURS? That doesn't make any sense at all.
Thank you, Ruby. I think this was just a simple misunderstanding. What I was trying to say (and maybe did a bad job of it) is that parents of autistic children and others who oppose Mr. Ne'eman's nomination seem to believe that he and Aspies like those of us here on AFF want to take away help/support services from their kids. That is utterly not true. I personally don't see the kind of support services I am talking about (i.e. counseling, help with activities of daily living, treating anxiety) to be the same thing as autism eradication therapies. I certainly don't feel comfortable being portrayed as somehow condoning child abuse... This is the last thing I am going to say on the subject because we have now gotten way off track from the OP's intent.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Sebastian - 04-02-2010 03:12 PM
For those of you who use Facebook, there is a Facebook page in support of Ari!
If you use Facebook, please support Ari here:
http://www.facebook.com/group.php?gid=108956302461753#!/group.php?v=info&ref=ts&gid=108956302461753
Sebastian
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Ruby2010 - 04-03-2010 07:07 PM
Thanks, Sebastian! I looked for one and couldn't find it, I am glad you pointed that out.
I've now written and emailed my senators! I am going to call on Monday, might stop by their office later in the week. Remember, your senators work for YOU! Put them to work supporting Ari Ne'eman!
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Shoneh - 04-07-2010 05:07 PM
I just called my senators and expressed my support for Ari Ne'eman. We should all do it, regardless of where we live or what party our senators belong to, since we don't know who's behind this.
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Genesis - 04-07-2010 06:06 PM
I'll support Ari but there is somethings that need to be done, before this whole world becomes gullible....
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 04-07-2010 07:31 PM
Genesis Wrote:
I'll support Ari but there is somethings that need to be done, before this whole world becomes gullible....
LOL you got my curiosity up. Become gullible about what ?
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - Genesis - 04-07-2010 08:47 PM
That were not suitable for anything Aspie or HFA...
RE: Ari Ne'eman's nomination to NCD on hold (posted obo adriant.esq) - skyblue1 - 04-07-2010 08:53 PM
ah , okay