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First Autistic Presidential Appointee Speaks Out
First autistic Presidential appointee speaks out
When Ari Ne’eman walked onstage at a college campus in Pennsylvania in June, he looked like a handsome young rabbi presiding over the bar mitzvah of a young Talmudic scholar.
In truth, Ne’eman was facilitating a different kind of coming-of-age ceremony. Beckoning a group of teenagers to walk through a gateway symbolizing their transition into adult life, he said, “I welcome you as members of the autistic community.” The setting was an annual gathering called Autreat, organized by an autistic self-help group called Autism Network International.
Ne’eman’s deliberate use of the phrase “the autistic community” was more subversive than it sounds. The notion that autistic people — often portrayed in the media as pitiable loners — would not only wear their diagnosis proudly, but want to make common cause with other autistic people, is still a radical one. Imagine a world in which most public discussion of homosexuality was devoted to finding a cure for it, rather than on the need to address the social injustices that prevent gay people from living happier lives. Though the metaphor is far from exact (for example, gay people obviously don’t face the impairments that many autistic people do), that’s the kind of world that autistic people live in.
Now, as the first openly autistic White House appointee in history — and one of the youngest at age 22 — Ne’eman is determined to change that.
In December, he was nominated by President Obama to the National Council on Disability (NCD), a panel that advises the President and Congress on ways of reforming health care, schools, support services and employment policy to make society more equitable for people with all forms of disability.
Ne’eman spoke to Wired.com in July in his first interview with the media since his appointment.
His nomination proved controversial, in part because some self-proclaimed allies of the autistic community think national dialogue on the subject should focus primarily on finding causes and cures so that autism can be prevented in future generations.
In March, the editor of an anti-vaccine website called The Age of Autism challenged Ne’eman’s ability to serve the needs of more profoundly impaired autistic people. “Do the highest functioning with the community,” wrote Kim Stagliano, “have a right to dictate the services and research that should be available for their less fortunate ‘peers?’ I don’t think so.”
Some of these online attacks escalated into threats. One anonymous emailer to a federal agency in Washington wrote that “assholes like Ari Ne’eman” should “have their tongues cut out” for suggesting that autistic people need respect, civil rights, and access to services more than they need pity and a cure. This conviction has made him a leader of the emerging neurodiversity movement, which Ne’eman sees as a natural outgrowth of the civil rights, women’s rights, and disability rights movements o...
How to Become an Advocate for Your Child
How to become an advocate for your child
Peter W. D. Wright, Esq.
Good special education services are intensive and expensive. Resources are limited. If you have a child with special needs, you may wind up battling the school district for the services your child needs. To prevail, you need information, skills and tools.
Who can be an advocate?
Anyone can advocate for another person. Here is how the dictionary defines the term:
(ad-vo-cate) – Verb, transitive. To speak, plead or argue in favor of. Synonym is support.
1. One that argues for a cause; a supporter or defender; an advocate of civil rights.
2. One that pleads in another’s behalf; an intercessor; advocates for abused children and spouses.
3. A lawyer. (The American Heritage Dictionary of the English Language, Third Edition)
Advocates perform several functions: They support, help, assist and speak on behalf of others.
Different Types of Advocates
Special education advocates work to improve the lives of children with disabilities and their families. You are likely to meet different types of advocates.
Lay advocates use specialized knowledge and expertise to help parents resolve problems with schools. When lay advocates attend meetings, write letters and negotiate for services, they are acting on the child’s behalf. Most lay advocates are knowledgeable about legal rights and responsibilities. In some states, lay advocates represent parents in special education due process hearings.
Educational advocates evaluate children with disabilities and make recommendations about services, supports and special education programs. When educational advocates go to eligibility and IEP meetings, they are acting on the child’s behalf. Some educational advocates negotiate for services. Others are less knowledgeable about special education law and how to use tactics and strategies.
Teachers and special education providers often see themselves as advocates. Teachers, administrators, and school staff often provide support to children and their families. Because they are employed by school districts, however, school personnel are limited in their ability to advocate for children with disabilities without endangering their jobs.
Parents are natural advocates for their children. Who is your child’s first teacher? You are. Who is your child’s most important role model? You are. Who is responsible for your child’s welfare? You are. Who has your child’s best interests at heart? You do.
You know your child better than anyone else. The school is involved with your child for a few years. You are involved with your child for life. You should play an active role in planning your child’s education.
The law gives you the power to make educational decisions for your child. Do not be afraid to use your power. Use it wisely. A good education is the most important gift you can give to your child.
As the parent of a child with a disability, you have two goals:
1. To ensure that th...
I love autism
I love autism
I was recently invited to be part of a committee responsible for planning an event to raise awareness, advocacy and funds for autism research and treatment. I was asked to help with the entertainment.
Last Tuesday, after a series of email virtual "meetings," we all gathered, some in person, some on phone lines. I was soon to learn that among the committee members were T.V. and Film Executives, journalists, publicists, a former Broadway producer, film producer, writers, each and all dedicated to optimizing outreach resources and channels of communication in order to help raise the profile of the current short and long term needs of families living with autism.
We began to introduce ourselves to one another as we went round the table. The director started, then the organizer of the meeting, and then since I was seated closest to the organizer, I was the third person to speak. "I'm Elaine Hall, I am the founder of The Miracle Project, a theater and film arts program for children with autism. Additionally, I lead a Bar and Bat Mitzvah program for children on the spectrum at Vista Del Mar Child and Family Services in Los Angeles, CA. Most importantly, I am Mom to 14 year old son with autism. I love Autism. I suppose I am an autism geek!" Responded to by chuckles.
As we continued our introductions, I was struck by how many of us, including these high-powered executives, have been impacted by autism. "I have a 17 year daughter with autism." "I have a 14 year old son." "I have an adult son." An 11 year old daughter. A Niece, a nephew, a neighbor, a friend, cousin, with...
We had one more introduction before concluding and moving onto the nitty-gritty of the actual event planning. Our final attendee was on the phone, so I could not see her expression. "Hi, she began, "I am "Kate" (name changed) and I have a child on the spectrum. Contrary to what that one person said about loving autism, I hate autism."
At that moment her words reverberated up and down my spine like a shot of adrenalin. Had my initial comments offended this woman? I thought I was just trying to be cute. Had I offended this entire committee? What was I saying? How can I love autism? Shouldn't this autism, like cancer, like diabetes, like war be obliterated. Be destroyed from the planet? Shouldn't all children be able to socialize, go to public schools -- for G-d's sake, to speak?
How dare I say I love autism. Who do I think I am to be so flippant? So Shallow. How dare I even think it. Especially in this room full of such wonderful, selfless committed people. Those who have chosen to make lemonade out of lemons and take their experience to be of service to others.
I want to correct, to comment, to qualify. Say something. But it was time to move on to the task at hand. So be still my heart -- I hope that I then offered some worthwhile information to help with the fundraising efforts.
"Is it possible to both lo...