Ari Ne’eman’s appointment to the National Council on Disability on hold

28 Mar

In a piece in the New York Times, Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism, Amy Harmon discusses Ari Ne’eman and his nomination to the National Council on Disability (NCD).

Mr. Ne’eman’s name was submitted by the White House as part of a group of nominees to the NCD. His nomination is to succeed Robert Davila, whose term has expired. Mr. Ne’eman’s nomination was “ordered to be reported favorably” by the Senate HELP committee on March 10th and sent to the full senate. At present, the nomination is on hold.

Mr. Ne’eman is an autistic adult. If his nomination is confirmed he will be the first autistic to serve on the NCD. He is probably best known his efforts with the Autistic Self Advocacy Network (ASAN), which he founded. ASAN seeks to advance rights of autistcs as reflected in its mission statement:

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports and others, ASAN seeks to organize the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens. Working in fields such as public policy, media representation, research and systems change, ASAN hopes to empower Autistic people across the world to take control of their own lives and the future of our common community. Nothing About Us, Without Us!

I will repeat for emphasis: “ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens”.

I find that a position difficult to argue with. Who wouldn’t support access, rights and opportunities for autistics?

This mission statement is fully in line with the purpose of the National Council on Disability, which also promotes rights and opportunity:

The purpose of NCD 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.

As the parent of an autistic child with very significant disabilities, I can say without reservation we need groups working on improving the rights and access and opportunities of autistics. I believe Mr. Ne’eman and the National Council on Disability would be an excellent match.

In her piece in the Times, Ms. Harmon notes that it is unclear who put the hold on the nomination and what the reason may be. Senate rules allow for a single senator to place a hold, anonymously, for any reason (including just plain obstructionism):

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 Senate has been rather obstructionist in approving many Obama administration appointments, leading the President to employ recess appointments in order to get some of his nominees into jobs. Recess appointments are not the sort of action the President takes lightly, indicating the level of obstructionism in place.

Mr. Ne’eman’s nomination to the NCD generated some discussion within the online autism communities when it was announced. For many people this centered on a question of whether Mr. Ne’eman viewed autism as a disability. Many went so far as to outright claim that he does not see autism as a disability. It would seem clear that Mr. Ne’eman views autism as a disability merely from ASAN’s mission statement which places ASAN as a disability rights organization. For those who remained unsure, Mr. Ne’eman answered this claim quite clearly in a recent piece he wrote for Disabilty Studies Quarterly:

It should be stressed: none of this is meant to deny the very real fact that autism is a disability. It is only to point out that disability is as much a social as a medical phenomenon and that the “cure” approach is not the best way forward for securing people’s quality of life.

Mr. Ne’eman and ASAN have been very active in united efforts by multiple disability groups, such as the recent request for an investigation into the methods employed by the Judge Rotenberg Center (which includes electric shocks and seclusion). One thing lacking in most autism organizations, in my view, is the recognition of our place within a larger disability community. Mr. Ne’eman’s track record of collaborations within this broader community is another sign that he would be an excellent candidate for the NCD.

The Times article concludes with:

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.”

I agree with Mr. Grossman that this is a great thing to have an autistic nominated to the NCD. As I’ve already pointed out, Mr. Ne’eman’s goals fit those of the NCD quite well.

One notable piece of irony in this story is that the organizations which are critical of Mr. Ne’eman’s nomination have no positions held by autistics. The notable exception is Autism Speaks, which only recently added an adult autistic (John Elder Robinson) to an advisory position. As an additional irony, it is very likely that Mr. Ne’eman’s own advocacy efforts were partly responsible for Autism Speaks giving a position to an adult autistic.

Autism represents a “spectrum” of disabilities. All to often, Mr. Ne’eman’s efforts are framed as being part of some divide between the “high functioning” and “low functioning” ends of the spectrum.

The New York Times piece noted this in this section:

But that viewpoint [neurodiversity], 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.

Neurodiversity certainly does not represent only “high functioning” autistics as its critics would imply. I will not speak for Mr. Ne’eman nor ASAN, but from my own perspective. First, neurodiversity is not limited to autism. Second, within autism, neurodiversity does not apply only to the “high functioning” autistics. In my opinion, the neurodiveristy “viewpoint” is one that stresses rights for all, regardless of the level of “functioning” or presence or lack of any neurological “disorders”.

There are those who try to downplay Mr. Ne’eman’s disability. Keep in mind, we are talking about a man who spent part of his education in a segregated special education program. The fact that he was able to self advocate his way out of this program is to his credit.

For the record, my perspective is that of the parent of a young child with multiple disabilities including very significant challenges due to autism. I would argue that it is precisely children like my own who most need other people to fight to protect their rights. It is from that perspective that I welcome the nomination of Mr. Ne’eman and look forward to his confirmation in the full senate.

53 Responses to “Ari Ne’eman’s appointment to the National Council on Disability on hold”

  1. Nostrum March 28, 2010 at 07:21 #

    I agree. The parents seeking cures often engage in “no true Scotsman” arguments about the severity of my kid’s autism. After all, I’d just understand the whole cure thing if my child were “severely” autistic.

    Well, alrighty then. Guess you showed me.

  2. Uly March 28, 2010 at 07:46 #

    I haven’t read the whole post yet, but I thought I should point out that the journalist’s name is Amy Harmon, not Amy Hardon. It’s a bit of an unfortunate typo.

  3. David N. Brown March 28, 2010 at 08:00 #

    Uly,
    Might be even more untortunate if it were NOT a typo!

  4. L Capella March 28, 2010 at 11:01 #

    Two words that I’d hoped I wouldn’t have to say about Autism Speaks: Intellectual Cowards. And it’s also cowardice that the senator in question hasn’t divulged their identity ,unless they can’t because of procedural reasons. This is preaching to the choir but the messages and issues on autism and disabilities go beyond any one subset.

    It’s high time Autism Speaks got out of the tunnel that they seem to be digging for their members and hopefully Autistica won’t follow them to the same destination.

  5. Sullivan March 28, 2010 at 14:57 #

    Thanks for the heads-up on the typo. I think I was mixing up her name with Hardan is the last name of an autism researcher whose papers I am reading.

  6. Donna March 28, 2010 at 15:00 #

    The way the govt works…

    http://www.washingtonpost.com/wp-dyn/content/article/2010/03/19/AR2010031905088.html?wprss=rss_print

    Ari’s online politics have caught up to him no doubts about that. Holds are very hard to undo and Ari has annoyed many who I am sure applaud this blocked nomination and in an age of when it is real easy to email your congressperson calling this out will only increase the number of emails that applaud the hold or want the hold removed. The disability council can’t afford the politics of controversy and for the good of the community perhaps Ari should remove his nomination so another person with the hindsight of age combined with actual employment and living experience would be in the best interest to the PDD/ASD community????

    • Sullivan March 28, 2010 at 16:00 #

      Donna,

      what do you mean by actual employment? Are the jobs he has held not “real”? There is a rumor around that Mr. Ne’eman has never been employed. It isn’t true. It is also a nice catch-22 for those who would criticize him. Either he has held a job (or more) and is then “not disabled” or he hasn’t and is “inexperienced”.

      He’s created an organization which is shaping the autism rights discussion in America–all while attending college. I don’t know what his GPA is, but I know I would have flunked out if I had tried anything of this level of commitment.

      It is strange to consider Mr. Ne’eman controversial in light of the organizations who oppose him. I think of what would happen if, say, someone from one of the groups that denies the benefits of vaccines were to sit on the NCD with the polio survivors who have served in recent past.

  7. Donna March 28, 2010 at 16:21 #

    Ari is of the tender age of 22, therefore he can’t have hindsight. Ari is no Temple Grandin. Temple for a long time has been speaking out on education, living arrangements, job experiences and what not, with an emphasis on helping the individual on an individual basis with what they need at that given time. She brings to the round table that is called the disabilities council the children, teens and adults she knows in real life plus all the caregivers, teachers, therapists, medical doctors, and the thoughts that only hindsight can provide. Temple is not bogged down in neurodiversity or cure/no cure but championing for what the individual person needs are.

    Temple is not bogged down like Ari is with his political views that have overtaken his message because he has surrounded by cure/no cure and neurodiversity and only hears from people who share his ideology.

    There are tons of Temples out there. Ari at the age of 22, is not one of them!

    • Sullivan March 28, 2010 at 16:52 #

      Nostrum,

      you’ve likely noticed I rarely discuss my kid like this on this blog. I do that for many reasons, not the least of which is that I don’t think it matters for what I write about. But others have framed this debate as though “severity” matters for this.

    • Sullivan March 28, 2010 at 17:01 #

      Donna,

      There are tons of autistic Ph.D.’s who speak out and write on autism? That is news to me.

      Mr. Ne’eman only hears form people who share his” ideology”? Do you have anything which supports that assertion? Mr. Ne’eman is a man who seeks out information, he doesn’t wait for it to come to him. Quite obviously he hears from many who do not share his views.

      Mr. Ne’eman is not “bogged down” by anything. This is exactly the image people are trying to create, but it has nothing to do with reality and isn’t even backed up by anything you write. For example, I see that you don’t acknowledge that your information was incorrect in as much as you asserted that Mr. Ne’eman had never held a job.

      Your assertions remain exactly that: assertions.

  8. autisticsspeak March 28, 2010 at 16:27 #

    I note on first glance that the NY Times has used my video snap shot without my permission.

    On Ari’s nomination, I’m of two minds. I do believe he believes TODAY that autism is a disability and is unfairly criticized for things he wrote as a teenager with very mild Asperger’s Syndrome. I do think that he has done some good.

    However, despite the “some good” he has done, he has also done some bad, like refusing to put anyone with recognizeable Autistic Disorder on ASAN’s board. He has also supported the exclusion of autistic disordered people from Autreat, Autcom and most recently has expunged people that disagree with him and criticize the lack of autistic disorder from his ASAN group list.

    If I were to nominate someone from the autistic community, it wouldn’t have been Mr. Ne’eman but Sharisa Kochmiester.

  9. autisticsspeak March 28, 2010 at 16:42 #

    Upon further reading, Amy Hardon has used my interviews with no attribution at all. I’ve filed a complaint with the Times. If she wants to use my work, she needs to properly footnote sources I would think.

  10. Paula C. Durbin-Westby March 28, 2010 at 17:52 #

    Ari doesn’t need hindsight. He has qualities that all the hindsight in the world cannot make up for- innovation, inspiration, a thorough working knowledge of most, if not all, aspects of disability issues, not only including the “autism world,” but that of other disabilities. He has reached out to cross-disability organizations in ways that most of his detractors have not even dreamed of. “Hindsight” is for people who have regrets. Ari Ne’eman is moving forward, moving the disability and autism communities forward, reshaping the conversation about disability away from a narrow-minded focus on causes and cures, and toward a positive and accepting world for *all* people with disabilities, including all autistics. This is in keeping with what the National Council on Disability does: “It provides advice to the President, Congress, and executive branch agencies to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.”

    Ari does not need to attain “advanced age” or even one more year. Think back to when you were 22. What were you doing to help improve the lives of millions of people with disabilities?

    Paula C. Durbin-Westby Board of Directors Autistic Self Advocacy Network

  11. David N. Brown March 28, 2010 at 19:43 #

    Ari has certainly taken up controversial views, but I don’t see how it could be considered “online politics”. As far as I know, he has not spoken out for any political party or position, other than endorsing or criticizing legislation and policies directly affecting autism. I’m not even aware of him being particularly outspoken on the “vaccine-caused autism” issue, though that hasn’t stopped AoA from protesting his nomination.

  12. Katie March 28, 2010 at 20:24 #

    Thank GOD Ari isn’t Temple Grandin! I do have respect for Ms. Grandin, but I would much, much rather have Ari on the Council than her. Temple goes around the country giving the same talk over and over to groups of parents who pay to hear her speak. Ari helps write bills and works with leaders in Washington to make sure ACTION is taken – action that improves the quality of life of Autistic people directly. Temple does a lot of talking, but Ari gets things done. I know him personally and his ability and knowledge in the field of disability advocacy never ceases to amaze me. I’m confident he could run the National Disability Council brilliantly!

  13. Regan March 29, 2010 at 00:10 #

    For the purposes of this, I thought it might be apt to consider what the mission and purview of the NDC is and would Mr. Ne’eman be qualified based on his current and past experience (see in particular the “current issues under research”), and perhaps to highlight to those who are 3-no-trumps in coronaries, that this is for a term which would expire in Sept. 2012, not a lifetime appointment. Maybe it’s just me, and frankly speaking that I do not always see eye-to-eye with some of Mr. Ne’eman’s points of view, that based on current goals and his experience to date, that he seems quite qualified for service on the Council, and give input among the MANY members of the NDC who represent a broad slice of the the community and constituency it is meant to serve and develop policy in aid of. I suspect that for those interested in the research, “cure” and even reimbursement questions that venues such as NIH, NIMH, IACC and means such as legislation might be more apt and promising areas to address those interests to, rather than promoting that somehow it all hangs on this single nomination.

    National Council on Disability
    http://www.ncd.gov/
    Accessed on March 28, 2010

    “The purpose of NCD 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.”

    “NCD’s current issues under research include:
    -Housing and its impact on people with disabilities
    -Developmental Disabilities Assistance and Bill of Rights Act: -Implementation Evaluation and Recommendations for Reauthorization
    Workforce Infrastructure in Support of People with Disabilities: Matching Human Resources to Service Needs
    -Accessibility of U.S. Overseas Development Projects and Embassies
    -Improving Access to Health Care, Special Education, and Long-Term Services for Marine Corps Family Members with Disabilities
    -Keeping Up: Technology’s Rapid Changes and Effects on People with Disabilities
    -National Disability Policy: A Progress Report
    -2010 National Summit on Disability Policy
    -Health Care Financing
    -Comprehensive Review of Mental Health Systems”

  14. Regan March 29, 2010 at 00:41 #

    And my apologies for the typos -substitute NCD for the incorrect usages of NDC, and strike that strikeout (which I don’t seem to be allowed to edit). The rest stands.

  15. FreeSpeaker March 29, 2010 at 01:00 #

    Paula and Regan make excellent points. I suspect that the opposition is from groups which do not include one single person in their hierarchy who has a disability of any sort. As Regan pointed out, Ari reached accross to other disabilities, which shows an insight into the problems of the disabled. In NY, paratransit, which is available to those who cannot travel on regular means, is about to be severely cut back. Ari would understand that this affects all of the disabled.

  16. Clay March 29, 2010 at 07:07 #

    autisticsspeak said:
    “However, despite the “some good” he has done, he has also done some bad, like refusing to put anyone with recognizeable Autistic Disorder on ASAN’s board. He has also supported the exclusion of autistic disordered people from Autreat, Autcom and most recently has expunged people that disagree with him and criticize the lack of autistic disorder from his ASAN group list.”

    All of the “bad” things you mention are merely the opinions of someone who doesn’t even give his name. There is a recognizable autistic on the Board, and the exclusion of someone from Autreat and Autcom involved someone who was really disordered, and a threat to the peace. The person you say he “expunged” from ASAN was a true asshat who had been warned several times for his aggressive manner, and then posted information from that List onto a blog run by a blighter. So I reject your opinions.

  17. Clay March 29, 2010 at 07:10 #

    Oh yeah, and this particular asshat even tried to blackmail another ASAN member, saying that he’d better stop arguing with said asshat, or else the footage of him at an ASAN protest of Aut Spks would be put on Youtube. We’re talking ‘no class’ here.

  18. BelleNY March 29, 2010 at 15:09 #

    Part of me wants to applaud this young man. I don’t think we should be looking for cures anymore. Instead we need to think of how many senior citizens there will be with autism who will not be able to adocate for themselves, or even live alone. Who will help them?

    Will he be able to understand the needs of the lower functioning people? My children are 17 and 18 now and I pray daily that I outlive them. Can he speak for the needs of the low functioning autistic?

  19. Corina Becker March 29, 2010 at 15:58 #

    Given that the needs of the “low functioning” autistic is the same but more noticeable difficulties that “high functioning” autistic have, plus his personal experience in special needs education settings, I would say that it’s very likely that Ari is very aware of the needs of the autism spectrum.

    Part of the work that Ari does is to ensure that all autistics are able to self-advocate for themselves as much as possible, and to eliminate or at least lessen the devastating results of not being able to self-advocate. So that parents and autistic people do not have to worry that they will not get services or the help they need because of differentiating levels of ability.

    This is what most, if not all, autistic advocates are working for, because it’s a very real reality for us too.

  20. Ian MacGregor March 29, 2010 at 18:07 #

    I’ve read the articles and the posts. Corina Becker the needs of low-functioning and high-functioning autistics are not the same. The sets of needs do intersect, but they are not the same.
    expect Mr Ne’eman to push the needs of the high-functioning, and where the needs of the low-functioning intersect, some good will be done by coincidence. But I also expect he will downplay the disabilities of the low-fuctioning which lie outside the intersection. As they do not fit his posautive ideology. I expect he will try to defeat any research which seeks to cure. In what way is Mr Ne’eman a friend to the low-functioning?

    • Sullivan March 29, 2010 at 19:02 #

      Ian MacGregor,

      If appointed to the NCD I doubt Mr. Ne’eman will have much effect on research, whether the research is towards a cure or not. Research is not the goal of the NCD.

      Their stated purpose is:

      The purpose of NCD 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.

      If you look at the publications generated by the NCD, you will find that they concentrate on employment/workforce issues, emergency management, living conditions. They are not a research funding or policy group.

      I do not expect anyone on the NCD to promote only concerns related to his/her own disability. I would expect Mr. Ne’eman to represent much more than just “high functioning” autistics–and much more than just autistics in general.

  21. Clay March 29, 2010 at 18:58 #

    @ Ian, of the truly uninformed – The National Council on Disability has nothing to do with funding research into autism or anything else. They deal with the needs of the disabled.

  22. Regan March 29, 2010 at 20:08 #

    I noted that the NCD receives reports from groups at their meetings. They also have held public meetings and listening tours.

    One thing I am wondering is how many groups and individuals currently and vigorously protesting have invested time, interest, sponsorship or participation in the kinds of activities that the NCD does? While partially rhetorical, I actually am interested in knowing.

    Did any apply to be a particpant/delegate of the NCD National Summit on Disability Policy? – there was a process to do so. If those groups did and will participate, that is an opportunity to actively represent that point of view, and thank you. If they did not, then I would question whether protest is of lack of representation or any genuine concern as to what this group did and does (and some of the statements which seem to misunderstand the function and mission suggest that), except that it has now been brought to light as something to comment on and that Mr. Ne’eman possibly has some views that are unpopular with some people. I also wonder, no matter who is appointed, how many people will now actively participate and attend to the NCD or will it go back to the usual talking points once this is all said and done?

    • Sullivan March 29, 2010 at 20:33 #

      Regan,

      I will admit to not covering the NCD as much as, say, the Omnibus and the IACC. I have been getting the emails for some time. I have posted about meetings. I have not seen anything from Mr. Ne’eman’s detractors on the NCD. That is, except for their recent efforts to keep an autistic off that Council.

  23. Nostrum March 29, 2010 at 20:30 #

    I’ve met Ari Ne’eman. He very much supports the needs of the “low functioning.” He wants to make sure those who can’t speak for themselves have effective advocates to make sure they are treated humanely and given the chance to live with dignity at whatever their ability. He does support therapy. He doesn’t support aversives or excessive physical restraints.

  24. Ian MacGregor March 29, 2010 at 21:46 #

    Thanks to those who corrected my misunderstanding of the purview of the board. I was in part reacting to the comment concerning the “No true Scotsman.” However, even in these areas needs differ. What about residences? I don’t know if a group home will be able to take proper care of my daughter when my wife and I can no longer do so. Better run, better monitored, more modern institutions may be ideal for her.

    What about jobs? Right now my daughter has no job skills, but I expect she’ll be able to do simple tasks before her schooling ends. After all she is only twelve. How will Mr Ne’eman help those whose skills are limited?

  25. Clay March 29, 2010 at 21:49 #

    Ian said:
    “How will Mr Ne’eman help those whose skills are limited?”

    How is it his job, instead of yours?

    What can President Obama do for your daughter?

  26. Thomas Armstrong March 29, 2010 at 22:00 #

    It’s important to keep this whole matter in perspective. Regardless of what you feel about Ari Ne’eman, the metaphor the New York Times uses of him as a “lightening rod” suggests that his appointment, and the hold on his appointment, brings to the national media much needed coverage of the issues raging within the autism community.

  27. mcguffin March 29, 2010 at 22:21 #

    “Ari doesn’t need hindsight. He has qualities that all the hindsight in the world cannot make up for- innovation, inspiration, a thorough working knowledge of most, if not all, aspects of disability issues, not only including the “autism world,” but that of other disabilities. He has reached out to cross-disability organizations in ways that most of his detractors have not even dreamed of. “Hindsight” is for people who have regrets.”

    This is JUST amazing, Paula. AMAZING. Maybe he can just advance straight to the Presidency. Forget whatever that Amendment is! He’s just above everyone else, right?!

  28. Regan March 30, 2010 at 00:31 #

    I think Thomas Armstrong makes a good point, and “raging” sometimes seems to be the correct choice of words.

    To expect any single agency, entity, and certainly individual, for that matter, to be responsible for filling in all the pieces or every individual interest might be kind of unreasonable…a quick persusal of just the sheer number of agencies and private nonprofits across different areas from civil rights, education and human services from local jurisdiction on up makes that pretty evident, but as a community who might hope to influence policy at a meaningful scale it would be nice if we could spend more of what seems to be considerable energy looking at where those energies might best be allocated on a big picture basis, learning at some level to pull on the same end of the rope in a cooperative rather than competitive way, and also working collaboratively with other disabilities groups who have been at this far longer and have learned to play nicely together or at least realize that there may be shared interest and benefit, even given some individual differences.
    The continuous internal splintering, myopia and often hostile demand for special interest or perfection that would satisfy everyone is not helpful and probably not attainable. However, I think that there are matters, which if we can look for those, which cross all disabilities and I believe that is the sort of thing which the NCD reports on, which might inform needs and positive direction.
    Example:
    http://www.ncd.gov/newsroom/publications/2010/A_Disability_Perspective.html

    Anyway, I’ve more than said my piece on this. Thanks, and Sullivan, thank you for highlighting your efforts.

  29. Ian MacGregor March 30, 2010 at 02:42 #

    Clay, Isn’t the purpose of the job to help the disabled to have better lives? While we have raised a very happy and beautiful young lady, it is doubtful that she’ll be able to support herself. She will be dependent on society. I have no doubt that that many would not go out of their way to show my daughter any kindness. I am not a fan at all of Mr Ne’eman, but I cannot say for certain he is among them. Past statements he has made are of great concern

    The question stands, what does he plan to do to help the low-functioning in areas which will be under his purview.

    Your last comment about “What can Obama do for my daughter? Well actually quite a lot for her and others like her. The IACC is a great start. The interrogative statement also brings into question the use of advocacy at all. Is not ASAN asking President Obama, a synecdoche for the entire US Government, what he can do for them?

  30. Dedj March 31, 2010 at 12:19 #

    “Clay, Isn’t the purpose of the job to help the disabled to have better lives? ”

    Yes, through the mediums listed above under their remit.

    I’m not sure what you are thinking of, but you appear to be expecting a organisation which – by it’s nature – deals with disability issues on the national systemic level to somehow have a refined focus on the individual service provision level.

    Although your concerns are undoubtedly genuine, they appear to be based on a (already corrected) misunderstanding of the nature and purpose of the NCD and Mr Ne’emans intended post.

  31. livsparents April 1, 2010 at 02:51 #

    To all those who feel that Ari is not a good choice for ‘all’ the autism community, do you think an autistic person would be more or less sympathetic and cognizant of issues in the autism community that say, a deaf person or blind person? WOuld they be aware of, say, environmental impacts to an autistic (flourescent lights and ambient noise, NOT thimeresol)?

    Despite people’s disagreements, Ari has qualities that most other activists probably lack, namely experience in the political/governmental mechanics arena. I think experience and hindsight that many may have would not prove beneficial if they cannot function well in the areas of lobbying, legislative and coalition building. Temple may be inspiring and motivating but the council members probably have dozens of inspirational examples in other areas of disabilities. Ideas for change AND the saavy to work through internal politics is what I think is needed in this council; and I think Ari has and will prove himself in that area.

    As far as becoming President (or holding major political office for that manner), permit me to overgeneralize and say that most on the spectrum are too focused and set in their opinions to schmooze and lie their way into political office. Just like people like JB Handley can never be statisticians and scientists, most autistics will never be traditional politicians; consider yourselves complimented…

  32. Clay April 1, 2010 at 06:02 #

    I agree with most everything livsparents said, even the last sentence, but would point out that while most autistics will never become politicians, Ari certainly could. He’s kind of a natural born one, and I mean that in a good way. To me, that only means that he will be more effective than others would, because for him, he takes to it like a fish takes to swimming. He may find some other way than to schmooze and lie. I doubt if he has his eye on the Presidency, but on some other office where he can be even more effective as an advocate for us.

  33. livsparents April 1, 2010 at 21:53 #

    Agreed Clay, it really is the people pulling the strings who have the real power in Washington anyway. And in the lobbying, writing of legislation and coalition building, a person CAN be both effective AND maintain integrity, won’t say it’s easy…but possible. If anyone can politically represent disability issues for the autism community better, I invite them to step forward, but I doubt that they’d fill the shoes better…

  34. Regan April 2, 2010 at 20:34 #

    Actually, based on today being World Autism Awareness Day, I was reviewing the United Nations Convention on the Rights of Persons with Disabilities, since the day was originated with the UN and the day has alignment with that Convention. It might be informative to review that Convention and compare to stated points of view not only on autism, but disability in general, and then see what/whose views are more congruent with that of the NCD and the larger picture of disability rights.

    Autism Awareness Day – April 2, 2010
    United Nations Secretary General Ban Ki-moon states support for World Autism Awareness Day on April 2, 2010

    United Nations Convention on the Rights of Persons with Disabilities. Entered into force on 3 May 2008.
    http://www.un.org/disabilities/default.asp?navid=13&pid=150

  35. Ethan B. Ellis April 7, 2010 at 19:03 #

    I’m 76, have cerebral palsy and have been active in making national disability policy since 1980. From that point of view,I am deeply disturbed by the disunity among those representing people with autism as epitomized by the controversy over Ari Ne’eman’s appointment to the NCD. During my lifetime, several disabilities have achieved national recognition and support, only to see both wane because such internal struggles have become public.

    I’ve known Mr. Ne’eman since he was in high school. I have never known a person with a disability achieve such national prominance at such young age. While we have disagreed from time to time, I am impressed by his acceptance as a national leader by his peers.

    All who represent people with autism should support him and what he can do for them while the spolight is still on that disability, which at best represents 1% of the general population and 4% of the disability population. In this time of federal and state budget crises, you cannot afford this disunity and neither can those of us with other disabilities.

  36. FreeSpeaker April 7, 2010 at 22:49 #

    Mr. Ellis makes an excellent point, that should be taken heed of by all. The simple fact is, disability groups are highly fragmented, and the government, etc. takes advantage of this fact. Where I live, in the NYC metro area, the MTA proposed draconian cutbacks in paratransit, along with cutbacks in regular transit. Hearings were held, and people testified. The regular transit cutbacks were significantly reduced, BUT THE PARATRANSIT CUTBACKS ARE BEING FULLY IMPLEMENTED. Why? Fragmentation. However, today a law suit was brought to prevent these cutbacks and several politicians finally began speaking out. Now they have to hand-out the funds. The suit was brought by a coalition of groups. Perhaps they will wise up and form a more permanent alliance.

  37. Kent April 14, 2010 at 00:31 #

    Test to see if I’m being purposely censored.

  38. Kent April 14, 2010 at 00:31 #

    Yep, guess I am.

    • Sullivan April 14, 2010 at 00:42 #

      Kent,

      are you aware that wordpress blogs have the option to hold the first comment by a new user as a spam block?

      I set that on this blog a while back. You are using a new email address for this blog, so your first comment got caught in the trap.

      • Sullivan April 14, 2010 at 00:51 #

        Kent,

        I’m sorry–your email address was in the moderation list from a previous time when some comments by you were problematic.

  39. Clay April 14, 2010 at 00:39 #

    @ Kent – Looks to me like you’re being purposely stupid.

  40. Hi April 14, 2010 at 01:22 #

    What’s up?

  41. Imgoingtocontinue April 14, 2010 at 01:30 #

    What will you do when you go to sleep, how will you prevent me from posting?

  42. FreeSpeaker April 14, 2010 at 01:33 #

    Kent, you must have made a wrong turn, the only blog that permanently censors dissenters is the cesspool known as Age of Autism, to its friends, and the Al-Qwaeda of Autism to those who are in touch with reality.

    I hope this clears up your confusion..

    • Sullivan April 14, 2010 at 01:55 #

      FreeSpeaker,

      many of Kent’s comments have been moderated today.

  43. FreeSpeaker April 14, 2010 at 14:16 #

    Sullivan, that is perfectly understandable since this blog is in the libel lawsuit friendly UK. However, I suspect that Kent’s, and others’ comments are not moderated because of disagreement, but because of the manner that Kent, et al, presents his point of view.

    Another topic…I have never met Ari, but, I believe that merely because he is high functioning is not a reason to even suspect that he cannot speak for the lower functioning. My son is in a wheelchair (manual), and is greatly concerned regarding the proposed cuts in paratransit services in our county. He has been a part of the lawsuit against the cuts (preliminary injunction issued) and has been lobbying for better funding. Yesterday, he shot down one of the legislator’s by reminding him that people in power wheel chairs, cannot “fold them up and stick them in the trunk (boot) of their cars” as this legislator thought. He advocates for all. I have no doubt that Ari will, too.

  44. orquesta sinfonica October 9, 2013 at 09:45 #

    Whats up this is kinda of off topic but I was wanting to know if blogs use WYSIWYG editors oor if you
    have to manually code with HTML. I’m starting a blog soon but have no coding expertise so I wanted to get guidance from
    someone with experience. Any help would be enormously
    appreciated!

Trackbacks/Pingbacks

  1. Tweets that mention Autism Blog - Ari Ne’eman’s appointment to the National Council on Disability on hold « Left Brain/Right Brain -- Topsy.com - March 28, 2010

    […] This post was mentioned on Twitter by Kev. Kev said: Ari Ne’eman’s appointment to the National Council on Disability on hold: In a piece in the New York T… http://bit.ly/az7Wxt […]

Leave a Reply to Clay Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: