In a recent new york times article we see that the united states senate may be showing some good common sense and may be delaying a vote on confirming Ari Ne'eman's appointment to the national disabilities council due to his controversial neurodiversity views. 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. the article stated.
I have noticed on looking at the stats of my blog that I was getting some hits from the United States senate seargent at arms URL. I can only hope that gadfly's pointing out that Ne'eman is being nominated to a disabilities council in spite of the fact he clearly does not even believe that autism is a disability or he considers himself disabled, yet presents himself as a disabled stakeholder could be the reason. Of course greater powers that be, such as autism speaks board member Jonathan Shestack may also realize that this is a bad nomination and may be intervening Shestack stated:
“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.
This statement on Jon Shestack's part is interesting in light of the fact that he is on the board of directors of autism speaks, an organization that solicits for donations and advertises that it will go for a cure for autism, yet has helped authorized nearly half a million dollar funding for rogue neurodiversity researcher Laurent Mottron who has said that curing autism is nonsensical and has also said that autism is not a defect but merely a difference and has even said that autism is not harmful. Shestack justified Mottron's grant by saying that although the man made statements that were politically annoying he was doing work that was very important for nonverbal autistic persons. This is likely nothing more than wishful thinking on Shestack's part as he has a nonverbal son with autism who is about age 18.
One possibility is some very right wing republicans who have contempt for Obama are merely holding up the nomination for political reasons and it has nothing to do with Ne'eman's neurodiversity beliefs. However, another line from the article makes that scenario less plausible:
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
This likely is a propitious sign that perhaps at least a few senators have seen the light, and see what a scam ND is and how harmful it is for persons with autism and their families. Had it just been a republican rebellion against Obama the other seven nominees most likely would not have been confirmed.
The article goes on:
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 stress was so great, he sometimes picked at his face until it bled. He was eventually transferred to a school for students with developmental disabilities.
This is interesting in light of the fact that we can judge Ne'eman by the company he keeps, such as ASAN members in good standing Harry Williams and Clay Adams who have spent extensive time bullying me on the internet yet Ne'eman has never censured these individuals in any way let alone expelling them from ASAN internet lists and other ASAN activities. I do know that Ne'eman had some sort of special education experience during my correspondence with him a couple of years ago, but I don't remember the exact circumstances. The statement that he was transferred to a school with developmental disabilities makes me wonder if he was ever mainstreamed before the age of 14 unlike myself, excluding one regular education private school that I was expelled from after about a half a semester due to my serious behavioral problems. So I wonder if Ne'eman could know what it was like to have gone to special ed schools for the greater portion of his childhood.
I can only hope that this is an omen for a longshot senate rejection of Ne'eman's confirmation. I expected Ne'eman to be confirmed routinely, as I did not think anyone (not even John Shestack or individuals at Age of autism) had the stature or the numbers to actually affect the senate's vote on this type is appointment. NDC appointments are probably rubberstamped in most cases.
I suspect Ne'eman will be confirmed in the end, but I can only hope that I am wrong. I certainly hope that during this hold up of Ne'eman's appointment that the senate will ask Ne'eman about his "difference is not disability" statement which he later edited. He will have a harder time covering up or editing his post that I pasted a couple of blog posts ago where he stated that he did not believe that Asperger's (which he has) is a disability. I certainly hope the senate asks him how he can legitimately present himself as a disabled stakeholder on the council on light of those statements. If this were a confirmation to the supreme court rather than the NDC I can imagine the hardball questions a number of senators would be asking him.
I suspect the miracle of the senate rejecting Ne'eman's appointment won't happen, but I guess in light of this new development I can still hope and dream.
Addendum: In light of this new development, I have once again written to senators Boxer and Feinstein urging them to reject Ne'eman's appointment to the council
I assume that is why Ne'eman is under marching orders to refrain from talking to the media.
ReplyDeleteNe'eman does not believe Autism or Aspergers are disabilities, does not believe in curing autism and opposes the right of parents to seek treatment and cure oriented research for autism.
I assume is views are compatible with the views of the Obama administration?
Clay Adams is a member in good standing with ASAN. I've read his blog on rare occasion. He makes fun of you because you struggle with things he has apparently mastered. In another words he makes fun of your disabilities, and thus the disabled in general.
ReplyDeleteHe may not speak for ASAN, but his standing with that organization speaks volumes. Has Mr Nee'man ever condemned the statements?
Has Mr Nee'man ever condemned the statements?
ReplyDeleteNo, not to my knowledge. Perhaps we can assume that Mr. Ne'eman is morally complicit with bigotry against persons who really do have this condition.
Regarding the position of Obama on autism, this kind of information was floating around before the election (main points copy/paste below). This suggests strongly that autism is seen as a disability that requires further research, screening and intervention. I was told though that there were changes and that the pledge to support was not to be carried out as initially intended, but I have not followed these developments closely. I would welcome more information on this, if anyone could spare the time sharing.
ReplyDelete-----
Barack Obama and Joe Biden will seek to increase federal ASD funding for research, treatment, screenings, public awareness, and support services to $1 billion annually by the end of his first term in office.
As an Illinois state senator, Barack Obama sponsored legislation that became law to create an ASD diagnosis education program, an initiative designed to promote the implementation of evidence-based practices. The goal of the project is to offer educational opportunities at all levels of care, including physicians, early intervention (EI) specialists, psychologists, teachers, day care providers, parents, respite workers, and speech and language therapists.
Barack Obama supported the Combating Autism Act of 2006, which was signed into law in December 2006. The Combating Autism Act authorizes increased federal funding for ASD research and efforts to boost public awareness and early diagnosis of ASD. Since the bill has been enacted, however, federal funding for ASD has not increased to the levels authorized by the Combating Autism Act.
Part of the Obama-Biden early childhood intervention plan will be directed at coordinating fragmented community programs to help provide all children access to screening for disabilities as infants and again as two-year olds. Achieving universal screening is essential so that disabilities can be identified early enough for those children and families to get the special supports and resources they need.
http://www.barackobama.com/pdf/AutismSpectrumDisorders.pdf
http://www.care2.com/causes/politics/blog/controversy-over-ari-neeman-the-national-council-on-disability/
ReplyDeleteThis is just pathetic---as usual.
(Part II)
ReplyDeleteFifth, he wants Autism Speaks to put the majority of their research dollars into community funding. While I definitely think that more money should be put into community funding I still believe that the majority of it should be in research. He is famous for his "Anti-cure does not mean anti-progress" line but how are we supposed to make any progress for the 99% that are more disabled than him if we don't do any research? Putting money into community funding will help one community while putting money into research has the potential to help millions.
Sixth, many "NDers" will harass those that dare to disagree with them with and Ari associates with these people and is in good standing with them. Like Jonathan I have been the target of much harassment. When I speak of my own life and difficulties I have been told that I am just "jealous" of the successful "autistics" (thank you Captain Obvious) and to just get over myself. So, apparently, some "NDers" just want me to "get over myself" and continue to live off SSI, unemployed, with my parents, etc. rather than to have a "real" life. Sometimes I think some "NDers" are just angry that some people with high-functioning autism are more disabled than they think and don't particularly enjoy it and, god-forbid, want a "real" life, one that includes less autism.
Seventh, I know he wants people with ASDs to have a good quality of life but not everyone with an ASD is blessed with good fortune and privilege. Many of us live of SSI, in section 8 housing, in poverty, etc. How is this a good quality of life? I know that health care is now government mandated but this doesn't affect me because I have Medicaid. Does he have any experience with trying to get help through Medicaid and other government funded programs? My knowledge of him tells me no. I know he went to a special school for people with developmental disabilities but I assume it was a private school. Where I live such a thing could have never happened to me because such a school doesn't exist and I would have never been able to afford such a school. I realize there are "vouchers" one can get for special needs students to attend private schools for free but that situation just isn't possible for everyone because there are way too many students and not enough resources; and those with the most money get the most resources and vice versa.
(Part I)
ReplyDeleteI don't think Ari should be appointed, not because I hate him or ASAN (I don't) and not because I disagree with everything he says (I agree with some and disagree with others, just like I do with you, Jonathan) but because I simply don't think he has enough experience and understanding of the issues surrounding disability and autism in particular. At least earn a college degree and prove that you can actually hold down a real job before embarking on such a thing.
For now I only want to make ten points:
For one, as far as I understand, he believes that facilitated communication is a valid communication technique. He doesn't believe that vaccines cause autism because the science obviously tells us they don't but believes that facilitated communication is a valid techniques even though the science obviously tells us that it isn't. I realize that FC has worked for a handful of people, literally. But for 99%+ it doesn't work and to promote it as a proven therapeutic technique is highly unethical; I find FC itself to be extremely unethical unless there is solid scientific evidence that the non-communicative person is actually the one communicating, which is very, very rarely the case.
Second, he is very atypical for someone with an ASD. As I have said before, he is the highest functioning ASD person I have ever heard of and he is just not representative of most with ASDs. Ari Ne'eman, Katie Miller, Alex Plank, et. el. are atypical ASD cases so it is no wonder that people question whether or not they truly have an ASD. It is not realistic to expect that most people with ASDs will come anywhere near their level.
Third, he associates himself with questionable "autistics" (e.g. Amanda Baggs) merely for political reasons; this just shows me how "ethical" he truly is.
Fourth, he believes, without credible evidence, that Autism Speaks is working on developing a prenatal test for autism to abort autistic fetuses. I have never found any evidence of this, ever, except coming from very radical "NDers." When asked for evidence they always state, "This is always what prenatal tests lead to." I read that AS is working on such a test to determine who has autism in the womb so that treatment can begin as early as possible, not to commit genocide on autistic fetuses through abortion. The more radical "NDers" just have this belief that AS is pure evil and that no one who works there has any kind of ethics.
Eighth, it is not financially feasible to give every disabled person all of the support they need to live the life they want. I wish it was but it isn't. If it was financially possible I would be much, much more supportive of many views I disagree with. But it isn't and I don't like to set up false hope for people.
ReplyDeleteNinth, many "NDers," ones that Ari associates with, say they want people with ASDs to be successful and have a good quality of life but many of them are unemployed and/or live with their parents. Some of them have college degrees, some more than one, and they are still unemployed and/or live with their parents. And they all seem perfectly content with this because they seem to be more interested in "being autistic" than having a real life. Most of them don't seem to even want to make an effort to get a job and/or live independently and are perfectly happy being a dole on their parents and/or government. Way to be a "role model" for people with ASDs.
Tenth, Ari associates with many people who are self-diagnosed with an ASD. A self-diagnosed person should have zero voice in the discussion about autism. If a self-diagnosed person receives an official diagnosis then they can speak. I am suspicious about the self-diagnosed because it makes me believe that some were unable to get an ASD diagnosis. Perhaps they self-diagnosed, tried to get an official diagnosis but were unable to so they claim that they are "self-diagnosed." There is no excuse why a person who suspects they have an ASD cannot get an official diagnosis: doctors are becoming more and more aware of ASDs everyday; being too poor isn't an excuse because I see a shrink for free.
Stephanie,
ReplyDeleteYour reasoning continues to astound me. Why would someone on the spectrum who believes that his or her autism is neither a disease nor a disorder feel the need for a doctor's diagnosis in the first place? Wouldn't that in itself be an act of hypocrisy? I am an Aspergerian. I am not "self diagnosed." I make not the slightest claim that I have a disease of any type. Nor do I state that I have disorder. The medical community (and the pseudo-medical community of behaviorism)are not political gatekeepers. They have no more right to admit or bar people from the autistic community than they did to do the same to those who were seeking identity with the gay community when homosexuality was listed as a disorder in the DSM.
Walt,
ReplyDeleteThat was one of the most amazing things I have ever read, amazingly stupid. Your logic and reasoning truly, TRULY astounds me.
"Why would someone on the spectrum who believes that his or her autism is neither a disease nor a disorder feel the need for a doctor's diagnosis in the first place? Wouldn't that in itself be an act of hypocrisy?"
Than perhaps that person is NOT on "the spectrum." I think the whole ASD spectrum has spiraled completely out of control. Simply being "gifted" is now thought to be "on the spectrum." Don't like to talk about the weather? You're "on the spectrum." Are you an introvert? That means you are "on the spectrum." Good with technology? Then you're "on the spectrum." Everyone can now said to be "on the spectrum" in some way and it needs to stop.
"I am an Aspergerian. I am not "self diagnosed." I make not the slightest claim that I have a disease of any type. Nor do I state that I have disorder. The medical community (and the pseudo-medical community of behaviorism)are not political gatekeepers."
No, doctors are not "political gatekeepers," they are doctors who are trained to know what an ASD is and an ASD isn't: they are the "gatekeepers" to who truly has an ASD and who doesn't: there is nothing political involved. Why are some so afraid to go to a doctor and get their ASD confirmed? If you really have it than what is the big deal? If you get your self-diagnosis confirmed and you still feel the same way you do than your opinion will matter. If an ASD person has an official diagnosis I will respect their opinion even if I don't agree with it. Until then, their opinion means absolutely nothing to me.
Why can't all of those who claim to have an ASD but won't/can't get an official diagnosis just say that they feel they can relate to those truly on "the spectrum" for whatever reason (e.g. gifted, abuse history, artistic, etc.) Why can't they say this and STILL support "Neurodiversity" (whatever it is). Why lie?
You don't have to be gay to support gay rights; you don't have to be black to support black rights; and you don't have to have an ASD to support "autistic rights."
If you don't have one that shouldn't stop you from supporting the cause of having autistic people live the best and happiest lives possible. Perhaps you have a friend, a family member, just find it a very worthy cause...whatever.
We would rather everyone be honest and instead of saying that they have an ASD or "Asperigan" or are "self-diagnosed" just say that you relate to those who truly have and ASD and that you support the cause.
As a person with an ASD I just can't associate myself with liars. I just can't...