Ari Ne'eman speaks about neurodiversity. Click here to watch.
On August 5, Ari Ne'eman, president of Autistic Self-Advocacy Network, gave the keynote address at a symposium on neurodiversity held at Syracuse University. Called “An Overview of the Neurodiversity Movement and a Discussion of Autistic Politics,” his intelligent and passionate speech is available to watch on video here.
The Thinking Person's Guide to Autism has also transcribed it, and published it in three parts. This is from Part Three, warning about the dangers of teaching autisic people that autism in itself is bad:
Because again, the thinking here is that eye contact is not a skill, it's a virtue. Hand flapping isn't just something that prejudiced people have a problem with, it's a sin. And once again, that has consequences for people.
Now people say in response to that -- and I always believe it's important to accurately reflect the views of my opponents -- "what about Autistic behaviors that cause problems? What about self-injury? What about struggling to communicate? You folks in the Neurodiversity movement just believe in leaving everybody alone, to rot and decay." That's quite frankly not true. The problem is not in trying to address issues like someone struggling to communicate -- anyone who has struggled to communicate, and there are many people in the room who are AAC and FC users, knows how important it is to empower communication and make it possible. The problem is when we define everything that is Autistic as "bad" and everything that is non-Autistic as "good."
We can pursue communication as good unto itself. We can pursue people not hurting themselves as a good unto itself. There is no reason one has to pursue those things as bad because they are associated with autism. Presumably we possess some form of judgment here, that we don't need that shorthand. But when we adopt the model that says, "Because there are some bad things that happen to Autistic people, autism must be bad," we end up with ridiculous contortions, we end up discouraging hand flapping -- why? because it's something Autistic children do, something Autistic adults do as well. We end up encouraging eye contact -- why? because it's something "normal" people do.
If you care about people with autism and other disabilities, especially those who require support for day-to-day living, please check out these opportunities to take action.
1. ASAN is encouraging people to contact the Center for Medicare and Medicaid Services (CMS) to support legislaton to prevent states from using funds designated to fund community living to pay for institutions.
Click here to read more and find out what to do, but do it soon-- the deadline is tomorrow, Tuesdau, Mune 14.
2. Beth Arky and Kristina Chew have put together a petition requesting laws to protect people with disabilities in New York State, in response to the shocking death of Jonathan Carey.
Ari Ne'eman: "What aggravates me is the idea that it's so inconceivable that we should have something to say about our own lives".Submitted by Landon Bryce on Wed, 06/08/2011 - 08:55
ASAN founder and president Ari Ne'eman recently did an excellent interview in the U.K. In it, he explains exactly why most money spent on autism research is wasted:
"The objective of autism advocacy should be to create a world that includes and supports autistic people rather than to create a world without autistic people. In short, we need to refocus autism education and research and interventions and policy towards a quality of life and a quality of opportunity agenda for all persons on the spectrum," he says.
"I have a list of every research study funded from a major funder, public and private in the US, around autism in 2009," he says, pulling pages from a pile of documents. "Less than 1% goes to research around adults. Only 3% goes to research around services. The vast majority is focused around causation, detection, ideas around prevention and cure.
Please read the whole interview.
A couple of months ago, I was on an international flight, despite the fact that I do not fly often or well. As the plane prepared to take off, it started making a noise that I found earsplitting. The woman in the row ahead of us complained about it and was assured that it would stop when the plane started flying. It didn't. Already anxious, I started to come unglued. I tried to speak to a flight attendant, and she was frightened by my level of agitation and threatened to have the plane returned to the gate.
Fortunately, I was with my boyfriend. Fortunately, he has noise-canceling headphones that he eventually insisted I put on. Fortunately, he was able to assure the pilot that I was safe and that he could "take charge of me."
Although nothing awful happened, I cannot write about this without crying tears of shame. It is truly awful to be adult with an advanced degree who can be completely undone by a high-pitched squeal and a snotty flight attendant. It is terrifying to know that under similar circumstances, I could be tased or even killed.
I understand the fear of being unfairly restrained.
So I understand why the Adult Self-Advocacy Network put a petition on change.org to protest a proposed change by the Center of Disease Control that would add a diagnosis of wandering as a possibility for children and adults on the autism spectrum.
On the other hand, I am a teacher who understands how terrifying it can be when someone with autism slips away. So I understand why Kim Wombles, a parent and advocate, would disagree with that position.
I wish that Kim would have focused her disagreement on the thing she does well: detailed analysis of the facts. Instead, she tried to attack ASAN on the basis on their rhetoric-- the way they expressed their ideas.
I have a problem with that. A serious problem.
I got a response from Ari Ne'eman to my complaint that he did not address the sensory needs of students with autism in a recent piece he wrote. I would like to thank Ari, both for his message and for his permission to share it with you:
Thanks for your feedback. I appreciate you taking the time to respond to my op-ed. You're right that sensory issues are one of the critical challenges with respect to general education school settings, as well as with respect to housing and employment as well. One of the issues we've been looking at with respect to this is how the Americans with Disabilities Act may be a useful tool in addressing sensorily unfriendly environments. The recently passed ADA Amendments Act of 2008 explicitly clarified that the definition of disability should be interpreted broadly and thus that the resulting protections of the ADA with respect to reasonable accommodation should be able to be claimed by people with hidden disabilities as well. With regards to more typical accessibility barriers in physical architecture (such as stairs or narrow corridors making it hard for wheelchair users to have full access) there exist architectural standards for new buildings and for buildings being renovated that help to address this issue. We believe that such standards should be applied to the issue of sensory access barriers too. The Access Board has done a small amount of work on this topic, and ASAN is currently considering sending an open letter to them to encourage further measures.
Thanks very much for writing on this topic and please don't hesitate to be in touch in the future.
If I had already read Spectrum Mentor's recent piece on what it is like for autistic students to physically be in school, I would have included a link to it in my letter to Ari. If you have a hard time understanding why sensory issues can make people with autism so miserable that they drop out of school, please read it:
How do you support a child (or yourself) in a place where your nose may be burning though you can't smell the cleaner the janitor used to clean the classroom.
There are lights that give you a headache when the task to be completed in that space required concentration.
It is common for others to focus on the task to be completed in that space, without considering the problems in that space that prevent the task from being completed.
My middle son has significant difficulty in school and at any given time would describe how he hated school and didn't want to go back. When I asked what he didn't like about it or what wasn't working, he'd say, "Everything."