An anonymous Senate member has placed a “hold” on President Obama's nomination of Ari Ne'eman (pronounced NAYmen) to the National Council on Disability (NCD). The hold prevents the nomination from being sent to the Senate floor for a vote. Mr. Ne'eman , the 22 year old founder of the Autistic Self-Advocacy Network, has Autism and is high-functioning. When—and if— confirmed, he will be the first person with Autism to serve on the NCD.
Some critics are concerned about Ne'eman's youth and lack of experience, but others have more specific concerns. Jonathan Shestack, co-founder of Autism Speaks, a group dedicated to financing cure-based Autism research and the largest Autism advocacy group in the
The Senate recently confirmed President Obama’s other seven NCD nominees.
SOURCES:
Ari Ne’eman and the Controversy Over an Autism Cure
Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism
http://www.nytimes.com/2010/03/28/health/policy/28autism.html
19 comments:
I can sincerly say that I am very appauled by how this man is being treated. How can the co-founder of Autism Speaks say that Ari Ne'eman doesn't undertsand or sympathize with what they are trying to represent if he has Autism. Needless to sya this this man is being very biased because who else should be better for that position that this man who has the disability and has risen against its odds. It's said to see how Mr. Jonathan Shestack negative effects toward Mr. Ne'eman are seen even beyond the disability. However, its must be in great honor if Mr. Ne'eman were to hold a position on the National Council on Disability.
Nancy L.
It is sad that Mr. Jonathan has no faith to what he preaches. People with disabilities have the rights to follow their dreams. If the president have faith in this man so be it. It sadness me to hear this type of things because I myself have a disability and brings me down knowing that people have this type of stigma it does effect me but at the same time makes me stronger and to prove that even if you have a disability you are able to make things come true. This man have gone a long way and has proven that he is able to accomplish things.
Nora
I can understand both perspectives of this debate/story. But I suppose my personal opinion is that without a doubt Mr. Ari Ne'eman should be appointed to the National Counsel of Disabilities. I do not feel that his age should play a factor on why he should not be assigned to the NCD, on the other hand, it should be looked at as an asset. Mr. Ne'eman should be praised for his efforts in founding the Autistic Self Advocacy Network at such a young age. This is a wonderful example of how Mr. Ne'eman has taken the initiative to form a platform for Autism, promote awareness, and be a model for other young individuals living with Autism. I feel that he is relatable, as he too is a person with Autism, and therefore can be an example to others, so they too can create a voice, no matter what age, race, or gender. I do understand though, the reasons for not wanting Mr. Ne'eman on the NCD. Those individuals who criticize Mr. Ne'eman for wanting to embrace Autism and not looking to cure it, believe that research is necessary in order to cure Autism. They feel that Mr. Ne'eman is not concerned with a cure because he cannot relate to other forms of Autism that unlike Aspergers, severely impair individuals from appropriate social interaction and independent living. I do believe that research is very important and necessary to treat and eventually cure Autism. I also believe that one should try to embrace this disorder but for those who suffer greatly it is a very challenging and overwhelming task. I disagree with Mr. Ne'eman in not promoting research, but I do agree with him that Autism should generate accommodations in everyday life workplaces and in the community as with other physical disabilities. I believe both accommodations and research are necessary in the fight against Autism. Mr. Ne'eman will not be the only voice heard and have the last deciding factor regarding choices within the NCD, therefore he should be assigned a position on the NCD. I do not believe he should be seen as a threat but merely a committed young voice promoting positive change.
As part of a San Francisco alliance of disability advocates/service providers and as a disabled person myself, I am trying to get the word out about the following campaign. The goal is to build national buzz around this summer’s ADA anniversary—what ADA law has meant, how much still needs to be accomplished and in general, what it means to be disabled today. We want to hear many, many voices. Please read below and consider joining our blogroll and other networks.
It’s Normal: Celebrating the 20th Anniversary of the Americans with Disabilities Act
Disability is a natural part of the human condition. People with disabilities come from all walks of life, in all colors, sizes, genders and ages. Those of us living with disabilities bring something to the table whether it is fresh perspective, political savviness, indomitable spirit, energizing presence, bold intellect, etc. We contribute to society BECAUSE of who we are. Human difference and diversity enriches community. Disability is not special; it's just a part of life. We are asking everyone to sign in support of this rational view of disability and to help spread the word far and wide!
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1. Sign the on-line statement of values:
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Many thanks!
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What comes to mind for me as I read this article is a quote by Albert Einstein" Great Spirits often encounter violent opposition from medicocre minds." I think that a man such a Mr. Ne'eman stepping up to serve on the National Council on Disability sparks the interest and motivates others with high functionaning disbilities to break the barriers that have been set by others. Change starts one individual at a time and in small steps. My hope is that Mr. Ne'eman aside from all things that are being brought up aside from his disability. Will have an opportunity to serve and start the chain of change to motivate others with diabilites to break barriers and be seen as individuals that have so much value to contribute to society.
I would really like to know the main reason behind the anonymous senate member’s decision to place a hold on Ari Ne'eman nomination for the National Council on Disability membership. In my honest opinion I believe despite his age Ari would be an excellent contribution and member for the council. I understand why his lack of support for further research in finding a cure for Autism is causing controversy, but in my opinion I believe he has a valid point. He is not exactly saying he disagrees with finding a cure, Ari is just concerned about the changes technological advances may have on the population of individuals with Autism. Ari concludes that in the near future prenatal pregnancy screenings and tests will be available for parents to detect whether their fetus is affected by potential conditions such as autism, just as how they are currently available for early detection of a fetus that may be affected by down syndrome. Providing future parents with this options gives the right and option to abort a child if they so please. He is not categorizing all autistic individuals in the same genera, as many may conclude he is simply taking a more broader futuristic approach to the problem. Ari also stresses that resources should be more attentive in improving the quality of life of an autistic individual, by expanding the level of accommodations and services throughout society, just as they have done so for individuals with physical disabilities, and I agree. With all this said, I do not think there is any reason to why Ari should not be a nominee for NCD committee, I believe he would be a great asset, especially being that he has a disability, which will provide the committee with great insight and a different perspective for future policies, laws, programs, and practices.
-Sukania Mendez
I personally believe that it is wonderful to see a person with a disability like Mr. Ne'eman take a stand and voice his views. He is showing the world what can be accomplished despite having a disablitiy and serving as a role model for all in the process. Wheather you agree with his views or not, his leadership skills cannot be questioned. While I understand the concerns about his take on Autism research,I absolutely believe that he should be appointed to the NCD. Despite his age,disability,and lack of experience, he has proved himself a leader that is not afraif to go against the majority to fight for what he believes. As someone mentioned before, the fact that he would be a member of a board comprised of other individuals means that he would be unable to solely make any decisions anyways, so why keep him from bringing his thoughts to the table and challanging us to consider his views? I believe that Mr. Ne'eman's case is just one more example of the progress is taking place in this field. I commend Mr. Ne'eman for his leadership and would like to see him appointed. I feel that the board should have an open mind.
M.G.Garza
I am some what shocked by this article. I find it a little difficult to understand Jonathon Shestack’s, co-founder of Autism Speaks, view when he says that Ari Ne’eman does not understand, represent or is sympathetic towards those who are affect in ways he is not. I understand that he is high-functioning but regardless of that fact he is Autistic and knows first hand the hardships and difficulties that may come along with having a disability. I can however see the point made that he is young and does not seem to have much experience. I am just a little taken aback by Jonathon Shestack’s comment. I would like to hear what Ari Ne’eman has to say in response to Mr. Shestack’s comment about his lack of understanding. If I had a child who was Autistic, I would feel very proud to know that a member of the National Council on Disability is Autistic as well. I hope that this gets worked out and both sides can come to a reasonable conclusion without anyone feeling discriminated or belittled.
Victoria Lopez
I agree with many of you, and I would also like to know why the Senate member was opposed to Ne'eman's nomination. Without any logical explanation, it appears that there are multiple forms of discrimination in play. First, Ne'eman is being discriminated against for his disability--but not in a way we usually hear about. It seems that Ne'eman isn't disabled enough to satisfy his critics. His disability is not enough to allow him to empathize with other forms of disability! This is ridiculous! There is also the issue of blatant ageism. Ne'eman is more experienced as a disability advocate than many people twice his age. This is no excuse to deny him of such a prestigious nomination. I hope more information about Ne'eman's nomination gets released. Without enough details, the decision to place a hold on the nomination looks like nothing short of discrimination.
Looking at his perspective, I think that Mr. Ari Ne'eman is a brave gentlemen trying to be the speaker of those with this type of disabilty. Ne'eman has of first hand the qualification that are involved in functining with his condition and he has made his point accross that a person has lead a "normal" lifestyle with proper education. By him being appointed as memeber of the National Councl on Disability will benefit those to better understand this issue. I personally have a daughter with this disorder and I have read about different stories that people can be anything they set their mind to it. Great news for the disabiltiy people on having nominated Ne'eman to be the representative!
Although I find it alarming that another advocate for people with Autism would not support the President's decision to appoint Ari Ne'eman to the National Council on Disability, I can understand where he is coming from. Although it is a great idea to appoint someone who lives with Autism and is an advocate for that disability to the council, I can see how this person may not understand fully the ways in which others who are low functioning are effected by this disability. As a high functioning person with Autism Ne'eman can give a personal perspective on Autism to the council. In order to dissolve the resistance against his appointment, Ne'eman can spend more time with others who live with Autism in order to understand how they are effected and bring their concerns and issues to the National Council on Disability's attention. The bottom line is that regardless of age and experience, it would be a great addition to the council to have someone with Autism on the council as well as someone from a younger generation who understands the obstacles that younger people with disabilities face today. Jonathon Shestack's organization is committed to finding a cure for Autism which is a highly commendable cause, until a cure is found he should support Ne'eman's joining the NCD because until there is a cure, people with Autism like with this disability everyday and they need someone to advocate for them in the council. Who better to advocate for people with Autism than someone who has Autism?
I do not feel that the “hold” on Ne’eman’s appointment to the NCD is a case of age or disability discrimination.
If appointed, Ne'eman has made it clear that he will not support scientific research because he feels it will lead to eradication of autism.
In his view, autism is not something that needs to be cured. However, not all research is genetic. The NIMH funds research in the areas of diagnosis, prevention and treatment.
His current mission for the ASAN network is to seek autism diversity and advocacy. However, this is a stark contrast to the message delivered by his opponent, Jonathan Shestack. In the film, “I am Autism” the need for unity and research was stressed with lines such as, “You have no cure for me and I relish their desperation.”
Nevertheless, as a potential NCD member, he will advise the President, Congress and executive agencies on promoting practices and procedures. He already has done a great job of advocating for autism rights and I support him in his new position.
B. Ramirez
From looking at both websites it seems to me that the two organizations are taking different approaches to Autism. The Autistic Self advocacy network seeks to embrace the differences that make up a person who has Autism. They seek to be heard as individuals with rights and equal opportunities. They wish to make it know that Autism does not need a cure. They state, "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." I can see how they are very similar to people with physical disabilities, such as the Deaf community that sought to be accepted as a people and not as a disease that needed to be cured. On the other hand Autism Speaks looks at Autism as a disease that need to be cured. They believe that people with autism are oppressed by an illness that they wish to eliminate. Their main goal is to raise awareness and develop ways of changing the "condition." I watched the video posted by Autism Speaks along with other commentary posted by individuals who have autism. The insight I gained was amazing. One girl with Asperger's expressed she found the video extremely offensive because it implies that children with autism break families apart and cause pain. She made a good point by saying that people would watch the video and treat people with autism as if they were enemies. Viewing the approach that Autism Speaks has taken make people in the Rehabilitation field wonder if years of advancement, education, and advocacy has made any change in the human nature. Why would a person with persona experience and a good mindset on the individual issues be stopped from helping and advocating for people with autism? Preventing the nomination from being voted on is setting this country back decades in Rehabilitation rights reform.
If my client didn’t want a transplant I would encourage them to get one and specify the reasons. I would do some research and quote the facts. I would specify positive reasons of course and the advantages. If they still didn’t want a transplant I would accept their choice, but would want an explanation from them of why not. It is the client’s choice to choose if they want their life to be different or stay the same. I would encourage my client to talk to someone who has had a transplant before. Maybe the client will change their mind by talking to someone who has actually experienced it. If the client still doesn’t change their mind I would try to get some background and do some counseling; maybe someone in their life had a bad experience with a transplant. There always has to be a reason for a choice.
Jennifer Valerio
Its crazy that this a member of the senate would do something like this. I feel that Ari Ne'eman is more than qualified. The fact that he has a disability only gives people with disabilites inspiration and home that they too can follow thier dreams. I can't believe that someone would say that he wouldn't "understand or doesn't seem to represent" people who are affected. In my opinion Ari Ne'eman is actually more than qualiified and has the experience and knowledge of know about people with disabilites. Overall I think that it's great that Ari Ne'eman was nominated for the National Council on Disabiliy.
ALINA LIMONn
I do not feel that the “hold” on Ne’eman’s appointment to the NCD is a case of age or disability discrimination. If appointed, Ne'eman has made it clear that he will not support scientific research because he feels it will lead to eradication of autism. In his view, autism is not something that needs to be cured. However, not all research is genetic. The NIMH funds research in the areas of diagnosis, prevention and treatment.
His current mission for the ASAN network is to seek autism diversity and advocacy. However, this is a stark contrast to the message delivered by his opponent, Jonathan Shestack. In the film, “I am Autism” the need for unity and research was stressed with lines such as, “You have no cure for me and I relish their desperation.”
Nevertheless, as a potential NCD member, he will advise the President, Congress and executive agencies on promoting practices and procedures. He already has done a great job of advocating for autism rights and I support him in his new position.
B. Ramirez
How could he not sympathize when he himself has the disability but like the say he is high functioning? To me I think that it is just the fact that he has the disability and really they just do not want him there. Sad but true it is all about who you know all about politics and not whether you have the ability to do what the person should to do. Why should he not have the chance of accomplishing something that to a person with a disability is so important because having a charge like that is awesome and a big load? They should at least consider him a little more or give him the opportunity to try and do a good job and if for some reason he is not able to do it then they should reconsider someone else.
Ari Ne'eman is representative of any figure in the spotlight that represents a controversial issue, for you can never satisfy everyone. As an individual with Asperger Syndrom, Ne'eman has relevant experience and perspectives to represent the Autistc community. He may not have experienced the entire severity of Autism, but due to the inability for individuals with Autism to communicate publicly, perhaps an individual with Asperger could be beneficial to the cause. His concerns about prenatal testing can be argued, but if you view individuals of disabilities as unique and deserving of placement in to societal culture, then you must acknowledge that perhaps the manipulation of who enters this world may be prejudice.
I think that Ari Ne'eman is a good candidate for the job, not only because he has Autism, however because he has worked on helping others with Autism as well. I would think that he knows what he's doing being that the President is recommending him to fill the position. Some people will never be happy for others and cannot see the big picture which for Ari Ne'eman is an accomplishment.
-Anna Ocanas
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