Friday, June 27, 2008

The show

I
On Tuesday night, I went out for Mexican food with four other Autism Hub bloggers. The restaurant was noisy and crowded. I was tired already. Steve worried he’d picked the wrong sort of place. Fresh corn tortillas in San Diego’s Old Town. What could be better? Someone pointed toward the ceiling. Everywhere I looked, there were parrots.
II
Sometimes I can still forget or discount some of those important-to-most-people scripts—Hello How Are You (and especially Goodbye) are less meaningful to me than to some. I do understand the importance and value of Thank You, however. To remind myself, I usually include a Thank You slide at the end of each presentation. This one was different. This time I put Thank You first. I wanted the attendees to know not only that but why I appreciated the invitation to speak about autism and advocacy. I needed to tell them about the times and the ways I’ve been asked not to speak about autism. Shut Up isn’t a script I ever hope to appreciate or embrace.
III
There was gluten in my breakfast. It was good. The five of us worked together and separately on our computers. Then it was time to go onstage. It’s time for the show, one of us said. It could have been anyone, I don’t remember. “The show” had become a part of our shared language, the culture of the group. As if we had known each other a very long time.

IV
Do’C of Autism Street talked about the autism “epidemic.” How many people believe there is an epidemic, he asked. Not one person admitted to it. He gave the presentation anyway. And it was brilliant. I’m pretty sure someone referenced Dr. Gernsbacher’s work in every session I attended. The day’s most popular question: How do you spell that?

V
About a year and a quarter ago, I started writing this blog. I saw it as an accommodation of sorts, one that would allow me to express some things I had not been able to get across to people in my life. Writing is my first language, the one that allows me to say what I really mean in a way that most people can hear. Somehow, this has led to people asking me to speak at conferences. Somehow, I have found I could do that. Not smoothly, not conventionally, and certainly not without PowerPoint, but as a person with something to say, nevertheless.

There are a lot of points I could make related to this. I’ll stick with this one for now: to all who have supported me in this work, thank you for presuming competence.
VI
A woman at the conference talked about her brother, a man who doesn’t use words to communicate, but makes other kinds of sounds. Not long ago, she and others in her family decided to presume competence by behaving “as if” he understood and as if his sounds and actions carried meaning. When she asked him if she was on the right track, he stopped making sounds and took a very long, very deep breath. Yes. The sister heard Yes. Another deep breath. For the first time, maybe the first time ever, in more than 30 years, someone had heard.

VII
Some people had a hard time understanding why anyone would be opposed to neurodiversity, a concept promoting respect for all human beings regardless of differences. We talked a lot about functioning labels, and how believing these not to be accurate descriptors of abilities does not in any way imply that all autism is the same or that all autistics have the same needs. This seemed not to be terribly controversial or difficult for most people to grasp. That was refreshing.

VIII
I was having a “good speech” day. Was I in danger of “losing my label?” Maybe…except for the stimming, the toy bird tucked in my shirt pocket (thanks, Burwick), drawing of squares, mumbling, pacing, trilling, minimal eye contact, avoidance of sunlight and light conversation... No, it wasn’t that good a speech day.
Fortunately, there was no need to pass (not that I’m very inclined to try unless I feel very threatened). After all, I wasn’t the only one repeating a single word. Respect. I heard it time and again until the entire conference became a concert of shared echolalia.

IX
The way we supported each other, each one taking the lead in turn as areas of strength and need came into view, each one stepping up naturally to offer technical assistance, emotional support or a ride to the airport as needed, this is a big part of what I will remember about this week. Support doesn’t always need to be complex or difficult. As we accepted and offered these small accommodations, we grew more powerful as a group and (at least from one perspective) individually.
X
Did we make a difference in anyone’s life? I can’t be sure, except in the case of my own. As I enjoyed some social time with a group, and shared work as part of a team, able to lead and to follow as needed, I became aware of a flexibility I have rarely known. As if development truly were lifelong, as if acceptance truly could promote growth. Here in the company of friends, I took a deep breath and enjoyed the ride.
For a much more thorough description of the conference presentation, be sure to read Steve's post.

18 comments:

  1. What a fantastic opportunity it was to meet and reconnected with Autism Hub bloggers. Berwick was a helpful ally for all as he held the intention that all were welcome. Please thank him for coming to the USD Autism Institute.

    For me, meanings emerge over time. I will cherish the unfolding of the many meanings of your work.

    Thank you.
    Martha Leary

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  2. Sounds like you had a good time to me Bev. I love Mexican food!

    I hope all the people there had a good time too!

    Patrick

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  3. Autism Diva/Ms. ClarkJune 27, 2008 at 4:40 PM

    There was a real (red) macaw across the street from the Mexican restaurant, too! Bev got pictures of it. I wasn't able to go across the street to see it, but I saw the photos on Bev's camera. I thought that was pretty cosmic. :-)

    I got chills reading your description of our group working together. It was so interesting. No one needed to post a sign over the entrance that said, "check your ego at the door." It was interesting to be part of that team when I really am not a team player.

    I'm not sure if you had a good speech day, but it was a very good presentation day, as far as I could tell.

    I enjoyed meeting Burwick and Penelope, too.

    It was frightening to speak in front of professionals who might notice our mastery of humor and sarcasm and our ability to understand things non-literal, and in shades of gray, when those professionals might decide to rescind our diagnoses... but we forged ahead, and I think walked out with our diagnoses intact. :-)

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  4. Bev, I was at the conference for both your Tuesday and Wednesday presentations. I found the conference enlightening is so many aspects but your story touched me very deeply. I left the conference with a new understanding and a much greater appreciation of all in the autism spectrum. While my son has the label ADHD I know it does nothing for him and have always been annoyed to hear everyone say "he must conform" to have a place in society. I do not believe that he should conform or that he has ADHD. Asperger's fits him better simply for the "signs". The conference gave me a much needed shot in the arm to know that I am not alone in thinking my child does not need to be fixed! Thank you so much for sharing with us. Sherrie

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  5. Thank you for sharing how it went. It sounds great. I would love to attend one day.

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  6. ...Did we make a difference in anyone’s life? I can’t be sure, ...

    Ah, but you all all have made a difference in mine, and I wasn't even there.

    The fact that you all presented as you did has made me just that much more hopeful for the future. Thank you.

    Joe

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  7. Bev,

    I so enjoyed seeing you again. Your presentations were most excellent.

    I'm really hoping you keep making videos - you choose great music, and they make it very difficult to miss the point.

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  8. Thank you (all) for doing this.
    Again.

    -- Phil

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  9. FYI: If you're having trouble speaking to people, I find it helps a lot to do an accent, or voice. Really gets rid of the stress.

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  10. Sherrie,

    Thank you so much for stopping by to comment. It means a lot to me to know that someone was encouraged by our work.

    Autism Diva,

    About that Macaw, and the restaurant decor: I described all of this to Martha Leary (who wore a beautiful parrot shirt on Tuesday, and showed her the pictures. You know what she said? That Steve choosing the restaurant was a way of saying that I was important to him. Personally, I think he might have chosen it for the great food, but I loved the idea of using this particular non-verbal communication.

    Meeting you was an awesome experience, and I hope to read your own perspective on the conference soon.

    Do'C

    Thanks for the kind words. It was a happy reunion for me, and I do hope we have many more chances to work together.

    Martha,

    Penelope says hello! Burwick is honored that you acknowledged his contribution. Sometimes he does struggle with being in the shadow of Squawkers McCaw.

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  11. AspieBoy,

    I agree 100%! I am not very good at accents, but use them liberally. Even Squawkers McCaw enjoys a bad accent once in a while. Pig Latin, backwards talking and whistle talk can also be useful at times.

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  12. Lovely, touching description of your time Bev. It was a joy to read.

    Thank you all so much for what you achieved. It makes me proud and gives me much needed hope for the future.

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  13. All sounds very interesting, and a good job done by all.
    VI is fasinating!

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  14. Bev, you are a woman of few, but very powerful words and I learn so much when listening to you. Thank you for taking the time to share your thoughts and a few tears with me. I could hardly hold mine back. You amaze me time and again.
    Thayis

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  15. Thanks from me too Bev.
    I'm sure you did a great job.

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  16. I enjoyed reading this post. At first glance, it reminded me of a seemingly unemotional way that I can come across with my choice of words, but it also held something deeper that I wish to come across at times - waves of emotion, rising and falling, peaking and cresting. Neat! thanks. :)

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  17. -wish I could attend one of your functions.

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