Ari Ne’eman is the President and co-founder of ASAN (Autistic Self Advocacy Network). In 2009 he was nominated by President Obama to the National Council on Disability, and in 2010 he was confirmed by the Senate and currently chairs the Council’s Entitlements Committee. It is with the utmost confidence and respect that I acknowledge Ari Ne’eman as the foremost leader in the autism advocacy movement.
ASAN works to advance the principles of disability rights, to the benefit of all of us that live with autism. Much of their work directly influences policy that affects the disabled population, such as affordable healthcare and equal education and employment opportunities. In 2013 they co-hosted a national day of mourning to “remember people with disabilities who have lost their lives at the hands of their family members or caregivers.” They’ve been outspoken about murders of autistics by family members, as well as their opposition of the organization Autism Speaks.
ASAN’s work is important and influential, yet I can’t help but notice their absence in recent months regarding autistic children that have gone missing. During the last year, it seems that at least once a month there is news about yet another missing autistic child. This past October, news of Avonte Oquendo‘s elopement gained national attention. The 14-year-old somehow walked right past staff and out an unlocked side door at his school and disappeared.
Those of us in the autism community take stories like this very seriously, and the boy’s information was shared far and wide, in hopes someone had seen him and report it to the authorities. His family endured three long months of heartache and despair as they wondered if he would ever be found. Sadly, yesterday’s news reports that human remains clad in clothing that matched Avonte’s description was found in New York’s East River. The family may finally have some closure to this horrible nightmare, but they will likely never have peace.
Although most of us don’t support Autism Speaks, including ASAN and Ari, it was that organization that posted information on their site about Avonte, as well as raising a great deal of money as a reward for information leading to finding him. For me, that’s a bitter pill to swallow, when an organization with so much negativity about autism (and no autistics on their board) shows that kind of investment in the autism community, but the leading organization for autism advocacy remains silent.
You may wonder how any of this relates to Ari Ne’eman. You may recall the tragedy involving Kelli Stapleton and her daughter occurred this past September. A source close to the family reports that during the first couple of months following her arrest, Ari made repeated calls to the prosecuting attorney’s office, demanding that Kelli Stapleton be charged with a hate crime. I’ve written previously about Kelli Stapleton here and here, so it’s no surprise that I don’t agree with labeling the event as a hate crime. There’s no need for me to enumerate the reasons why I disagree, again. But I would like to note that Landon Bryce, from Thautcast, who I’ve found myself in disagreement with in the past, wrote this piece about Kelli Stapleton and also disagrees with categorizing what happened as a hate crime. His post was thoughtful and logical, and I appreciate it when we can meet in agreement on an issue.
While Ari was making phone calls, the autism community was looking for Avonte. They were circulating posters and conducting searches. While Ari made phone calls, ASAN made no statements and circulated no information about Avonte Oquendo. There was nothing posted to their website, and nothing posted to their Facebook page.
While others asked about school security, and how a disabled child with a history of elopement could walk right out of his school, Ari made phone calls.
While people questioned whether Avonte’s IEP (a legal document that states what services and supports a school will provide to a student) included procedures and protocols to prevent elopement, Ari made phone calls to demand that a mother be charged with a hate crime against her daughter.
There were many missing children that came before Avonte, and it’s true that in none of those cases did ASAN or Ari Ne’eman release a statement or get involved in any way. And neither did many other self-advocacy organizations, although parents and bloggers engaged in a flash blog to honor those children that never came home. It’s also true that during the year preceding Kelli Stapleton’s attempt to take her life and that of her daughter’s, she blogged and conducted interviews far and wide, begging for help for her daughter’s aggression. And during that year neither ASAN nor Ari Ne’eman ever made a statement or offered resources to help her. And again, neither did other self-advocacy organizations.
When a parent was crying out for help for her autistic daughter, Ari wasn’t there.
When countless autistic children have gone missing and their parents begged the community for help, Ari wasn’t there.
When it’s possible, and even likely, that school negligence contributed to an autistic child going missing and dying, Ari wasn’t there.
But when a parent reached the end of her tether and tried to commit an unspeakable act, Ari started making phone calls. Without knowing Kelli or her family, without knowing the full history of Issy’s challenges, without knowing school personnel that have tried to support Issy, and without any knowledge whatsoever about the events that transpired that day, Ari made repeated calls to the prosecutor requesting she be charged with a hate crime.
Two days before writing this, I sent the following message to Ari on Facebook:
Hi Ari, a few people have mentioned to me that they haven’t seen ASAN or you post anything about Avonte Oquendo, either when he went missing, or as of today. I was wondering if there was something in the works to address the tragedy of how he managed to get past staff and out of his school, and had nothing in his IEP regarding supporting him and his tendency toward elopement.
I did not receive a response in return.
While I have no doubt that ASAN and Ari Ne’eman support and promote the rights of autistic people, I’m left with questions about their role in the community.
Do they support the health and well-being of the families that support autistics?
Is ASAN’s ultimate aspiration to simply be a political action committee?
Why was their sole advocacy for Issy Stapleton aimed only at prosecuting her mother to the fullest extent of the law? Did they ask Issy if that’s what she wanted?
Is the reason they do no meaningful work for Autistic children because they feel they’re already adequately represented, or because they resent the coverage of autistic children and feel their issues will smother the issues of autistic adults?