Self Advocacy in Policy and the New OR Commission

I did a few things last week that will likely be blog-fodder for a long time to come, some pleasant, others not-so-much. On the pleasant list was a trip to Salem, my state's capital, to witness the signing of the executive order (PDF) creating the Oregon Commission on Autism Spectrum Disorder. Here's the press release (DOC) and some video and print news coverage.

As I wrote about previously, I have a lot of hope for true inclusion of autistic individuals on the policy level in Oregon based on the speedy correction to the town hall invitations to include autistic people, and on the addition of the self-advocate position on the Commission. Being invited to the signing last week also gave me hope as, based on my positive interactions with all involved, I was invited not as a token autie but as a citizen who had successfully participated in the policy making process.

I have hope as well because Oregon has had a good history of self-advocacy and currently has strong self-advocate organizations with members who participate actively in policy making. Self-advocates are also included seriously (as in, important council positions) on the policy level of the Oregon Council on Developmental Disabilities.

While autism, particularly for adults in Oregon, typically falls under the developmental or intellectual disability umbrella, the self-advocates currently included at the policy level of DD/ID programs and in DD/ID legislation tend to not be autistic; we are vastly underrepresented still. Hopefully that is starting to change.

At 9:45 AM in the temporary ceremonial office (the permanent one was still under repairs after a fire), I listened to Representative Edwards and Governor Kulongoski each give short, respectful speeches about the new Committee. I watched Edwards' autistic son play peek-a-boo with the state government staff. I remembered to take off my hat.

When this whole thing started, I had never been a direct participant in policy before. I had never been to a town hall meeting, had never spoken up to a council or to legislators, and certainly had never thought that I could influence policy at all.

I saw Kulongoski sign the order, which in some small way I've been told I did in fact influence, into being.

It is possible for autistic self-advocates to make a difference in policy. And we do not need to be experts at politics to do so--showing up to public meetings and speaking, typing, signing, or showing our ideas, thoughts, and needs can make an impact. If it's not possible to do this without assistance, seek out local self advocacy organizations which provide direct support to enable us to attend policy sessions. Remember that we have the entire, highly successful, history of the disability rights and self-advocacy movement to draw from, both as a resource, and as a precedent.

Nothing about us without us!

(And if you're in Oregon, here's how to apply to the new Committee.)