Ari Ne'eman, seen here in East Brunswick, is the first person with autism nominated to the National Council on Disability. East Brunswick man with autism, controversial advocate nominated to federal council
January 05, 2010
Ari Ne’eman keeps a copy of the U.S. Constitution folded in his wallet. It’s a constant reminder that his "war" — his advocacy and activism on behalf of people with autism — is worth fighting, even if it engenders controversy and the occasional death threat.
Eight years ago, the 22-year-old East Brunswick native was an unhappy, bullied child with few friends. At the private special-education school he attended, staff members prepared students for the future by teaching them to wash dishes, he said.
Today, after a swift and sometimes bumpy ascent in the realm of national autism politics, he is the first person with autism to be nominated for a seat on the National Council on Disability. If confirmed by the U.S. Senate, he also will be the youngest person to serve on the board in at least 20 years, council spokesman Mark Quigley said.
President Obama submitted Ne’eman’s name last month, sparking a decidedly mixed reaction on autism blogs and message boards.
Ne’eman, who sometimes uses aggressive language and who has attacked the views of some of the best-known autism-advocacy groups, is untroubled by his critics.
"The real war is against prejudice, discrimination, lack of support and abuse," he said. "That’s a war I’m proud to say we don’t believe we should be taking any prisoners."
Some find fault with Ne’eman because, in their view, he’s not quite autistic enough. Ne’eman has Asperger’s syndrome, a relatively mild form of autism. Those with Asperger’s typically have difficulty with social interaction, a hallmark of autism. They’re often physically clumsy and intensely focused on a few subjects, almost to the point of obsession.
But they’re also typically of average or above-average intelligence, with good communication skills. Many people with more profound autism can’t speak at all, leading families to suggest Ne’eman isn’t the most appropriate advocate.
Ne’eman’s views and tactics are another matter.
He’s tossed verbal firebombs at Autism Speaks, one of the nation’s best-funded autism groups, accusing the organization of insulting people with autism by directing most of the money it raises to researching autism’s cause rather than helping those who already have the condition.
The exclusive focus on a cure, Ne’eman contends, amounts to medically engineering people like him out of existence.
"We should be spending at least as much money on improving our quality of life instead of trying to get rid of us," he said.
He occasionally complements his comments with guerilla tactics. Last month, he organized a protest outside of Carnegie Hall in New York City, where an Autism Speaks fundraiser was being held, he said. Ne’eman knows he’s a lightning rod, saying he’s received death threats. After one threat last summer, he said, he had to be escorted by police to speak at an event in New Hampshire.
But there’s little debate about his growing voice in the national autism debate.
As founder and president of the Autistic Self Advocacy Network, he’s watched his group spawn sister chapters in 12 other states.
He’s also served on state boards in New Jersey, fighting for the rights of people with disabilities.
The young activist’s efforts come at a time of growing awareness and worry about autism across the country. According to the latest data from the U.S. Centers for Disease Control and Prevention, one in 71 boys and one in 110 children meet the criteria for autism, making it one of the leading childhood developmental diagnoses.
Ne’eman has risen to prominence while still in college. He attends the University of Maryland-Baltimore County on a full scholarship.
Supporters say his voice, however unwelcome to some, is needed now more than ever.
"He’s our future," said Monique Dujue Wilson, the mother of a 23-year-old son who is severely autistic. "Within uncomfortable is honesty."
Staff writer Mark Mueller contributed to this report.
I've known Ari for about five years now, first "met" him when he wrote a guest article at Neurodiversity weblog. We had an interesting discussion, and acknowledged each other's points. He's a very practical and diplomatic young man, and I can't think of anyone who would be a better representative, for all of us on the spectrum. Those who say he "isn't autistic enough" simply don't know the challenges he has had, and overcome, and those same people wouldn't listen to anyone who is "too autistic". They just love to put us in these "Catch 22" situations. I know that he, (and many of us), can understand perfectly the needs of those who are labeled "autistic disorder". It's only a label, imperfectly applied, to a condition that is essentially the same.
We've been on several Lists together, and from all that I've read of him, I know that he is very passionate about disability rights, for everyone. I met him in person last year at Autreat, listened to him speak, and can understand how people (and politicians) who meet with him are impressed with his fervor for his mission. ASAN, the non-profit organization he founded and directs, is all about helping people; whether it is helping to inform public policy towards the disabled, writing effective letters supporting or opposing proposed laws, protesting organizations who claim to speak for autistics, but don't, or who torture developmentally disabled people of all kinds, the whole gamut of civil rights issues. And now and then, it takes an interest in individual issues, such as the one down in Arkansas. It's an issue that every parent should be deeply concerned with, if they don't want a similar thing to happen to their child.
I feel as proud and hopeful about Ari's nomination as I was when President Obama was elected. I know I won't be disappointed with either one, that they will each do their best to live up to their own expectations of themselves. Sure, they'll both have to fight the "other side", maybe sometimes make compromises, but I know that with them, we're going to be a lot closer to our goal.
ACTION ALERT by Ari Ne'eman, ASAN President.
Hello,
In the past, we've written to you about advocacy issues relating to the rights of adults and youth on the autism spectrum. Our voices have made a difference on all manner of policy concerns and have sent a clear message that those who seek to deprive Autistic people of any age of their rights will have our community to answer to. Now we'd like to ask you to help us take action to help protect an 11-year old Autistic boy in Arkansas named Zakhqurey Price, currently being charged with felony assault after fighting back when two staff members restrained him in response to behavioral challenges. The school has ignored repeated efforts from Zakh's grandmother over the course of the last five months to obtain needed IEP supports to improve his educational options and manage his behavioral difficulties.
According to the suspension notice, the restraint was in response to Zakh destroying school property - something beyond the scope of what would be allowed under recently introduced federal civil rights legislation around restraint and seclusion in schools. Disability advocates, including ASAN, are fighting to pass this crucial legislation that would broaden the protections available to students like Zakh as well as those with other disabilities and with no disability at all. We have asked for your help in passing this important legislation, and together we can succeed in bringing proposed civil rights protections into law - but not in time to help Zakh. That is why we need you to take action now. Find out how below:
School Principal:
Pam Siebenmorgan (One of the charging parties in Zakh's felony hearing - polite but firm calls and e-mails encouraging her to drop the charges would be helpful)
Phone: 479-646-0834
E-mail: psiebenm@fortsmithschools.org
School Superintendent:
Dr. Benny Gooden (The Superintendent runs the entire school district - polite but firm calls and e-mails communicating how this situation is damaging Fort Smith Public Schools' reputation would be helpful as well)
E-mail: bgooden@fortsmithschools.org
School Board Office: 1-479-785-2501 Ext. 1201
We recommend that you both e-mail and call if you can. If necessary, e-mail is the preferable option. If you would like your e-mails to be passed along to Zakh's grandmother, please bcc: info@autisticadvocacy.org. Please stress the importance of Fort Smith Public Schools taking the following steps:
-Drop the charges against Zakhqurey Price
-Work with his grandmother to put in place an IEP that will fulfill Zakh's right for a Free and Appropriate Public Education in the Least Restrictive Environment
-Improve training for school personnel to prevent future such incidents and to ensure that students on the autism spectrum as well as with other disabilities are included, supported and educated in Fort Smith Public Schools.
If Zakh is declared incompetent as part of the hearing scheduled for January 12th, state law requires that he be placed into a mental hospital for at least 30 days. His grandmother fears that, due to the negative repercussions of being taken out of the community and being forced into an institutional setting, Zakh may lose skills in such an environment and not be returned to her indefinitely. That is why we need you to act now. Please distribute and repost this action alert. Thank you for your time and your advocacy, and as always, Nothing About Us, Without Us!