A Congressional Oversight and Government Reform Committee hearing took place this week.
Its purpose?
To better understand the needs of children, adults and families living with autism.
Just ten days before the hearing, we were dismayed to learn that the original list of invited witnesses did not include a single Autistic person from a self advocacy organization.
Self advocates and their allies mobilized quickly to press for representation. On the eve of the hearing we celebrated when the final list of official witnesses included:
- Ari Ne’eman, President and Co-founder of the Autistic Self Advocacy Network (ASAN), and
- Michael John Carley, Executive Director of the Global & Regional Asperger Syndrome Partnership (GRASP)
Many other Autistic people faxed in their testimony.
Why are the testimonies of Mr. Ne’eman and Mr. Carley at the November 29 Congressional hearing so significant?
Nothing About Us Without Us
A basic tenant of the disability rights movement is “Nothing About Us Without Us”. It’s been a slogan of self advocates for decades. With good reason.
When we exclude the voices of persons we claim to “serve” - we are both disrespecting their personhood and ignoring the essential contribution they bring to the conversation.
This seems self-evident, right? But self advocates know they must assert themselves to be heard - on Capital Hill - as well as in their personal lives.
Autistic self advocates swiftly and effectively mobilized for a voice at this hearing. A precedent has been set upon which to move forward.
Re-examining priorities
Mr. Ne’eman and Mr. Carley voiced priorities ignored and/or underemphasized by other witnesses.
You can find an analysis of the hearing, and can download pdf documents of the testimonies of all witnesses at The Thinking Person’s Guide to Autism blog here.
You can download Mr. Ne’eman’s testimony here and Mr. Carley’s testimony here.
How should Federal research dollars be spent?
Given limited resources, what should be the focus of federal funding for autism research? This was one of the key questions at the hearing.
Here’s an excerpt from Mr. Ne’eman’s testimony:
“Of the approximately $217 million dollars that the National Institutes of Health (NIH) invested in autism research in 2010 (the most recent year for which data is available), only a meager 2.45% went towards improving the quality of services and supports available to Autistic people and our families. Only 1.5% went towards research that addresses the needs of Autistic adults. When compared to research on questions of causation, etiology and biology and diagnosis, the percentage of the autism research agenda focused on the actual needs of Autistic people in order to improve their quality of life is miniscule. We are pro-research, but the research agenda must be re-balanced to incorporate both causation and quality of life.
“This matters. It matters more than I can possibly articulate, but I will try to do so, nonetheless. I remember recently visiting a service provider in Manhattan earlier this year to learn more about how we can improve disability employment outcomes for people with severe disabilities. While I was there, a non-speaking Autistic man in his mid-20s came in with his father. They were looking for some help trying to find him a job or at least something meaningful to do with his day. I asked him some questions and his father helped give responses, but it was immediately clear that his son knew exactly what I was saying, he pointed out what he was interested in, he shook his head at what he had no interest in, he raised his hands when he was excited. He had plenty to say and clearly rarely got the opportunity. I think about that young man – who probably wasn’t that much older or younger than me – often, and particularly at times like this.
“Members of the Committee: Why can’t we do better for him? Why can’t we give him a chance to communicate more clearly, to not only sit here and testify before Congress someday but also be able to tell his supporters and friends what he wants for his life, to tell his parents that he loves them and how important they are in his life? Some people say that until we unravel the causation of autism, that is impossible. That is quite simply not the case — Augmentative and Alternative Communication technology has existed for many years now and can empower even those of us who cannot speak to make their voices heard.
“If we invested a mere one-tenth of the amount of money that we currently pour into causation into empowering Autistic people to communicate, that young man and hundreds of thousands more like him would be able to communicate their needs to us today.
“I am not here today to speak for every Autistic person – that’s impossible. What I am here for is to argue for every Autistic person to have the same opportunity to communicate that I have come to enjoy thanks to the support that I have been lucky enough to receive in my life.”
- Ari Ne’eman, testimony to Congress November 29, 2012
Broadening the public conversation
The November 29 Congressional hearing has led to media interest and opportunities for broader public conversations about the Federal role - not only in autism research - but also in services in support of children, adults, and families living with autism.
Yesterday, Mr. Ne’eman was featured in a C-Span “Washington Journal” interview that included call-in questions.
This twenty minute interview is a truly significant contribution to the public conversation about autism. I encourage you to watch it here.
Moving forward
As Mr. Ne’eman said in his testimony, it is impossible for one person to speak for all Autistic people. To me, there’s nothing more foundational to quality of life than speaking for oneself. When a person does not use verbal speech, this means access to other forms of communication. And for all persons it means the opportunity to learn and practice self advocacy.
This week, a door opened. Self advocates are part of the national conversation about autism and the federal government’s role in research and support services.
Organizations like ASAN and GRASP empower self advocates to organize and exert collective influence.
But what about our kids’ personal lives? What skills and support do they need to communicate effectively and advocate for what matters most to them? That’s the day to day challenge of parents, mentors, teachers, and allies listening to and partnering with individual young people as they plan for their lives after IEPs.
Your turn
What are your thoughts about this week’s events, and your own child’s self advocacy?
Let’s start a conversation in the comments!
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Graphic credit - Autistic Self Advocacy Network (ASAN)
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