Friday, June 27, 2008

Inadequate Summary, Part 2

In my first conference summary, I wrote about the morning before the presentation and the presentation itself. I left out at least 100 anecdotes, but the gist is there.
Later that day, we were scheduled to do a breakout session for 90 minutes. And to close the conference, all speakers were invited to be part of a panel discussion.

First, let me finish relating a bit about Peyton Goddard.
During the presentation, we were each to choose subject matter that was important to us and relevant to our understanding of the value of the Autism Hub community. One thing that was quite profound to me was the compelling difference of views of autism that are embodied by the Hub's overarching philosophy versus someone who could actually take the life of a child, as happened to Katie McCarron. I am deeply respectful of Katie's family, especially having gotten to know her grandfather a bit, and I wrote to ask him permission to talk about this during the conference. Mike McCarron gave me his blessing.
On that topic, I chose to read Mike's Open Letter to the Autism Hub, followed by a moment of silence to honor Katie. What I didn't realize, mainly because I never looked up from Mike's letter as I read it for fear of being a bit overwhelmed by 200 stunned, silent pairs of eyes on me and the emotion of trying to grapple with the loss of a precious little girl, is that Peyton had been unable or unwilling to remain in her seat while I was reading. She had moved to the edge of the theater, perhaps even left for a bit.
(I said in my last post that I would talk about what Peyton wrote if she granted permission to do so. Today, she gave me permission via her father, Patrick).
Fast forward to the moments before we were to begin our "breakout" session. Peyton was in the auditorium again, in the front row typing a message. She finished typing and then immediately left. Her mother had transferred her words to a slip of paper, which she gave to Estee. She told us that Peyton had written the message for Estee and Bev. Consider the subject matter I just related to you when reading Peyton's words:

"Queer is equated to fear and pity. It should = Love."

Peyton also wanted us to know something she has said at an earlier time, but is also relevant to the content of the conference.
"We need to stand on each other's shoulders in order to reach our common goal."

I hope you are now getting a better feel for why I am referring to these posts as 'inadequate summaries'. How am I supposed to impart to you how all of this felt as it occurred, moment after moment, all day long? I can't do it. I don't have the words.

Okay, so back to the breakout. Our morning presentation ended at 12:30 (...sorry, Jodi, I know we were supposed to be done at 12:00. But we were kind of on a roll at that point). Lunch was one hour long. At 1:15 the five of us convened on stage to admit to each other that we had nothing for the breakout. We were done, we had exhausted our repertoire of videos and slides and anecdotes. But wait! James had a great video we hadn't shown - Belong. We would play that to get things going. And Bev had a slide show we did on Tuesday's breakout - Myths about Neurodiversity and the Autism Hub (good stuff). Estee has a chapter in a new book, and she would do a reading. Camille and I would, well, um, we would lend support.
We made it through James' video and as Bev's slideshow went on, the audience and us Hubbers began a dialogue. Long story short, Bev never got the chance to finish her Powerpoint. What happened, instead, was a fantastic discussion covering all kinds of topics. I want to point out in particular that this breakout group had just sat through a long, 2-hour session with us and opted to come back to interact with us some more. I wish I had taken notes during all of this, as the discussion was deep and important. A round of lattes and slices of lemon loaf would have made this feel like a fireside chat. It was really refreshing, thought-provoking, and productive. Thanks to that small group of people for selecting our breakout.
I need to take a moment here to also acknowledge and thank HollywoodJaded for her attending the conference and for her overall support of all our efforts. HJ is one of our Hub webmasters, and none of this would be possible without hers and Dave's efforts to keep a good thing going. HJ also took some pics, and I'd like to use one to segue to the next session - the panel discussion...

A bit of lead-in. I worked in the weeks before the conference to increase the attendance of autistics. Dr. Anne Donnellan and Dr. Jodi Robledo worked with me to ensure that a minimum of obstacles existed for autistics to attend. I then asked Ari Ne'eman to help me spread the word that at least one "Autism" conference had every intention to include "Autism". Though I hope we do better next time, several autistic folks did attend. I'll keep to a first name basis for now and say that Steven, Lauren, and Sara were the attendees. They had attended the entire conference, but only in the last moments before the last session - the panel discussion - we asked them to join us on stage. It was time to provide a voice to the self-advocates that were not presenters. Lauren opted to stay in the audience. In the following picture, you will see some of the panel members, L-R:
Stephen Hinkle, Darlene Hanson, Steven K, Sara L, Me, and Kate McGinnity:

What I really enjoyed during this segment was the interchange between various people on the autism spectrum. In one memorable moment, a young woman in attendance with her mother stood up and declared her preference that she be considered to be a "person with autism" as opposed to an "autistic person". She cited several reasons for feeling this way. I utterly respect her assertion of this viewpoint, and the way in which she clearly and diligently stated her case. We often throw the word "self-advocate" around, but here is a case where actions speak louder than words. I would be remiss if I didn't also mention Steven K, Bev, and Camille's responses on the same topic. Though they all disagreed with the original speaker's viewpoint, it was eminently clear the respect that existed between all individuals with divergent points of view. Moreover, the point was not lost on me that here were 4 autistic people, engaged in a really good discussion that is highly relevant to self-esteem and identity, while close to 150 NT's observed, and learned, and for the most part stayed out of it. Is this not what it is all about? From Peyton's note to this exchange of ideas, I hope you can grasp the importance of all that transpired.

Thursday morning, I woke up at 4:45 to go to work. The conference was over. I was exhausted, but felt really good about what had happened. I was still processing the many levels of information I had immersed myself into, I was still in a mildly unsettled state I often feel after putting myself "out there" like that (I am not a highly social creature), I was physically tired and even more so intellectually, and I was acclimating to the fact that - several years now after becoming an active participant in the Autism community as I know it - many people have forgotten more than I have yet learned.
And before I drove off to get back into the workaday routine, I did a quick email check.
I had received an email from Autreat. Several people had listened to the MP3 of the interview Bev and I had done on NPR and were writing to express their enthusiasm for the message we sent that day. One person was listening with xyr child, a young adult, who was "squealing and cheering" during the playback.

For a community which is supposedly impaired in the area of relationships and communication, the "experts" may be surprised at the prevailing level of interconnectedness.


Niksmom said...

Steve, I sit her in awe of what you and the other folks--presenters, panelists, attendees--accomplished together.

Though I am not yet at a point of getting involved in any significant advocacy, I know that you and others along with you are paving the way.

Thank you for your passion, fortitude, and willingness.

Club 166 said...

Many times I get the feeling that the internet is only a tool for any immature 14 year old (or adult acting like an immature 14 year old) with a keyboard and internet access to spew whatever screed they deem important to them at that instant.

Then things like this come along to remind me that the internet can also be an essential tool in linking people of disparate locations but similar circumstances. And that the net can facilitate intelligent discussions, which can lead to increased levels of understanding by all, which can lead to people taking action "off the net" both locally and regionally, which can lead to large, grassroots movements.

The stone's a rolling, and it's picking up speed.


Phil Schwarz said...

I think it was truly amazing that both the USD conference and Autreat were going on, the same last week of June.

(Next year, try not to collide on dates :-). I think Autreat 09 is locked in already for June 29-July 3, 2009.)

(And we really need to get one of these blogger symposia going here on the East Coast! For a number of reasons, shoehorning a blogger panel session into AANE's summer conference for adults on the spectrum didn't work out, but a separate standalone program for sometime in the fall or winter might be a possibility.)