Showing posts with label ASA. Show all posts
Showing posts with label ASA. Show all posts

Monochrome Autism Advocacy?

When I attend events like the recent Autism Society national conference, it reminds me that we do a lousy job reaching out to parents and providers with a broader set of experiences. Bluntly, the attendees tend to be white, middle-class, and female. That doesn't mean that there are not minority voices, or that there aren't some fathers present, but the gatherings are not reflective of our communities richness.

Conferences are expensive to attend, time-consuming, and not really something I do for social purposes. I admittedly skip the "town hall" gatherings, the fundraising gala, and other events. I walk the vendor exhibits when the hall is least crowded, often right after lunch. So, the events are not for everyone. Yet, they shouldn't seem so exclusive, either.

How can we attract more voices to the conference? I'm not sure, but when you are an insular group, even without meaning to be exclusive, you don't learn as much as you could.

The problem is, any "solution" sounds condescending. Scholarships and grants might help, but how would those be awarded? Some already exist, yet they don't seem to be adding to the diversity. Is there a better solution?

Fathers need to attend. People of all ethnicities, religious traditions, and economic backgrounds need to attend. We need to gather and learn.

Surely, I'm not the only person concerned that the "faces of autism" panel was pretty homogeneous. That's not to dismiss the importance of our voices, but a recognition that there are other voices, too.

Panel at Autism Society Conference

I am scheduled to participate on a panel at the 2013 Autism Society Conference:

Friday, July 12, 2013
3:30 PM - 4:45 PM
David L. Lawrence Convention Center
Pittsburgh, PA.

The topic is broad: life. That's a lot to cover in the 15 minutes each of four speakers will be granted. I don't know what I can say in 15 minutes, but I'll give it a shot. The moderator has offered the following ideas:

  • What did family do for you?
  • What were your school experiences?
  • What was a help and what was not helpful?
  • How has your adult life developed?
  • What are you doing and what would you like to do?
  • What are your sensory issues?
  • Do you have friends or relationships?

The quick answers, if I choose to tackle these topics in the short amount of time allotted:

Family, especially my mother, did whatever they could to guarantee a "normal" childhood. School was a miserable experience, even through graduate school. That's how many people would answer, including those without any disabilities. People telling me I need to change and need to be more "charming" annoy me. You want me to do my best work, leave me alone. Adult life has been a lot like high school, and sometimes worse. I'm teaching and writing, doing what I like and wishing I had more time in every day to do more. My senses are always overwhelmed. I'm married to my best friend.

What do people want to know? Why would my answers matter?

Autism Society of Pittsburgh, ASA Conference

Having moved from Minnesota to Pennsylvania in 2011, I have not been directly involved in autism advocacy and education for the last 18 months. I was busy enough moving and navigating my new workplace that I decided I was busy enough without volunteering to help others. Now that we are settling comfortably in Western PA and the job is now focused entirely on research (no teaching this semester), I want to do more.

On January 16, I had a nice lunch with Dan Torisky and Heidi Hess of the Autism Society of Pittsburgh (http://www.autismsocietypgh.org). Mr. Torisky is the president of the Autism Society chapter (or "affiliate") and Ms. Hess is the coordinator of community outreach. I look forward to working with the local chapter, because I respect the Autism Society of America (http://www.autism-society.org) and the work it supports.

The ASA annual conference is going to be hosted by Pittsburgh this summer, July 10-13, 2013. I look forward to helping the local chapter host this event.

I encourage parents, caregivers, educators, and support specialists to join the Autism Society chapters in their states and cities. ASA and its affiliates try to keep a local focus, something other organizations do not do well or entirely ignore.

As readers know, I am uncertain of what might be ahead for me. I do not know if I will be teaching next academic year, working in private industry, or finding some other adventure. (We hear the economy is improving; let us hope it truly is.) Yet, finding the regional Autism Society means that I will have supportive colleagues and hopefully new friends in Western PA. Having a social network and purpose beyond "work" reduces my stress significantly.

I also continue working with organizations in Minnesota, and elsewhere, via email and video-conferencing. Technology has made it possible to be engaged nationally without traveling. Admittedly, I love that I can stay at home and answer questions — but there is still something special about interacting with students, parents, and educators in person. If you are in Western Pennsylvania, Eastern Ohio, West Virginia, or parts of New York, I am willing to meet with local groups and attend regional events.

Again, I thank Mr. Torisky and Ms. Hess for welcoming me into the local autism support community.
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