Thursday, December 11, 2008

Four hours

Four hours is a very long time to talk. For me, sometimes, four minutes is too long. It’s worth the effort though, when minds are changed, and there are many strategies I use to keep things moving when words don’t work. On Saturday, Squawkers and I presented a workshop at TASH 2008 on the topic of “autism advocacy” and autistic advocacy as it can be. I called this presentation, “Speaking of Autism: Who Speaks for Whom?”

The first segment was a PowerPoint with narration by text-to-speech software, outlining some of the struggles I faced prior to diagnosis. These are not things I can say with my own voice, but I need to say them. This is the part that, when giving a talk in Alcoholics Anonymous, people sometimes call “qualifying.” I find that this works for me in allowing people to see past the Notlikemychild condition they may see before them.

This was followed by introductions amongst the attendees, who were given Hello My Name Is tags with names like “Train Wreck” and “Destroyer of Families.” They found they had a hard time making friends or being trusted with these labels on their backs. Who knew?

To ease the burden of speaking, I also used a number of videos to illustrate points about good and bad advocacy, including work by Christschool, Amanda Baggs and others. I told the stories of Teddy Willis, Adam Race, Alex Barton, Katie McCarron, Jacob Grabe and many others through a combination of pictures, text, video and speech. I tried to do as much listening as talking, and this turned out, unsurprisingly, to be a very productive strategy.

In the audience were two people on the spectrum, including a well known FC user and a woman who told me that she is a regular reader of this blog. Also present were a few family members of autistic adults, several educators, an employee of ARC of New Mexico, and a woman who said she had recently attended a DAN conference.

It was an adventure. Someone (not me) used the word “eugenics.” Someone complained that she saw nothing wrong with Autism Every Day. It had helped her, she said. I tried not to argue; I had asked for, and promised, a suspension of judgment during the workshop. By chance or fate, my video of Autism Every Day would not play. I asked those who had seen it to help me describe it, just the first two minutes, before any mention of murder was made. I asked them, what did you see?

Several people spoke. They had seen frustration and challenges, parents at the ends of their ropes. They saw worry for uncertain futures, hopelessness and desperation. This is where the whole topic of empathy gets very interesting for me. I heard people talking about the way they saw the parents feeling. This makes sense to me. The people talking were parents and they were not autistic.

Do you know what I saw there in those first two minutes? Three children spoken about as if they were not there. “She is like a baby.” “He’s never said a single word.” I empathized as much as anyone, I argued. I empathized with those children. I know that feeling, and it wasn’t hard to see it in their eyes, in their gestures.

There in that conference room, I saw subtle changes in some faces. Lights were coming on, not everywhere, but somewhere. By the end of it the woman who had liked Autism Every Day asked me for recommendations. She had some money saved, and she was no longer willing to give it to Autism Speaks. I was happy to point her in more positive directions.

The woman who had been to DAN! had visibly relaxed. Now she spoke up, “Defeat…I never realized how bad that sounded.” I was glad I hadn’t said anything the first time she'd mentioned it. Sometimes, being at a loss for words can be a pretty good thing.
Ari Ne'eman of ASAN was a keynote speaker at the TASH 2008 conference.


  1. Hi, Bev. I've been waiting for this post. ;)

    First, thank you and Squawkers again, so much, for presenting! I think you can see just how important it is that our voices are heard within places like TASH and also in the direct care provider's agencies. It sounds like you were also surprised by some of the things said and seen there... both for good and bad.

    I was Killer of Dreams in that exercise, and I thought it was a great one. In fact, I insisted (because people kept asking if they could take the label off my back, heh) on wearing the sticker for the rest of the day and on the airplane - and it is still on my jacket - as a sort of protestawareness raising thing. Maybe people just thought I was nuts, but I have had the chance to explain it to some folks who did ask about the sticker - which I find useful myself in learning how to talk to people about autism, the fact I am autistic, and the fact that I do not find that to be a bad thing. So, thank you for that, too!

    When I got home, my friends said it was untrue and why was I wearing it? I explained and they understood and thought it was a good exercise, too. But I know that not everyone share that opinion.

    I loved your videos! Especially the airplane one with the motivational sayings... is that available online anywhere? One of my things is airplanes, so I really liked it. And the other videos were good, too. I know there was another I wanted to ask you about for the human rights training, but I can't remember which one it was now.

    I'll look at the links you gave there and just may find them. :)

    Yes, I'm the regular reader who was there. It was great to meet you and to be able to tell you how much I appreciate your blog!

    Yes, I very much had to bite my tongue several times - and at other times I thought it'd be better not to. It was, after all, a time for education. And I saw some lightbulbs go off, too. Of course I cringed a bit at the mention of DANI - the woman was sitting right by me! - but I didn't want to be too confrontational about it. On the other hand, people often tell me they'd never have known I was autistic if I hadn't told them.

    I remember the woman from DANI, too, and that was a moment I really enjoyed, too. Sometimes not saing anything and just showing people - as in the old writing maxim "show, don't tell" really is best.

    Thank you again, and may we continue to open minds and hearts and change the way people are looked at, both within the system and without. And maybe one day soon I'll make good on my promise or threat to join the autism hub ring. :)

    Oh yes, and the fellow at the New Mexico ARC said I'm welcome to visit any time... we spoke several times in the course of the conference. I wish I could remember his name!

    Maybe he'll show up here and give it. Here's hoping lots of folks from the workshop come here to your blog. I really liked seeing those lightbulbs go off!

  2. 4 hours! Wow. But sounds like you did an excellent job.

  3. Yes, sounds like a fantastic presentation. Wonderful, wonderful. And dude, I want a shirt that says "Killer of Dreams".

  4. Hi Ari,
    Thank you so much fo doing this and then writing about it. We need more fellow aspies like us that will go out and be a voice for those of us that can't speak. I loved some of your ideas and exercises and may incorporate some into the next time I have to speak. I know how difficult it its to hold your tongue when dealing with people that think Autism speaks and organizations like that are a good thing. I've bitten my tongue til it bled to stay politically correct, and not go off on parents.

    Parents, teachers and people in general so need this education. Our numbers are growing at a rapid rate. So thank you so much for doing this, I know how difficult and draining it must have been. Make sure you take time for yourself to regenerate.

    BTW, I am a fellow Aspie, one of Tom's FAMSS people, the mom of an Aspie, and a board member on the Greater Philadelphia Autism Society of America, I write a biannual news article fo the newsletter.

    Keep up the good work

  5. Emily,

    It was great to meet you. Thanks for commenting here, and please keep in touch. I hope you do start blogging, you have a lot to add to the discussions. The day before I left for the conference, I was wearing a Disaster name tag all day. It really seemed to make people uncomfortable.

    The airplane video is by Do'C at Autism Street. There is a link to his blog in my sidebar. The video is called A Little Left Rudder; I love that one too.


    Great idea, we should do some t-shirts! You are a Killer of Dreams! (I the nicest way possible of course...)

  6. Bev,
    Thank you for making the effort to present at TASH. It is a happy thing that you and Squawkers had many gentle listeners. You are changing our world.

    I'm looking forward to seeing you at the USD Autism Institute in January.

    Oh, Squawk - nice photo with Ari!
    Be well,

  7. I'm all in favor of the T-shirt idea!

    Seriously, I am. I think it would be a wonderful way to get the word out.

  8. The name tag thing sounds cool -- and was apparently effective. Would be curious to hear more details about how you coordinated that part of your activities (how you passed out the labels, how you instructed people for dealing with or responding to them, how you led discussion related to them etc).

    Sometimes people NEED to be a little uncomfortable for a while in order to learn. If people are TOO comfortable for TOO long, then chances are, they aren't growing. We only grow by challenging, and thereby stretching, our boundaries.

    Hope that was not too drenched in cliches :-)

  9. Hi, Andrea Shettle! These are very good questions and I'm glad you asked them. It was a small group, so I just walked around the room, starting at the back and applied the labels (after asking if anyone had an objection). I allowed about 10 minutes for people to circulate and ask each other questions, as they tried to determine who they were.

    I had a list of suggested questions on a slide and left that up during the exercise. It included, "Would you invite me to a party?" "Would you allow me to take care of your child?" etc. I also participated in this, applying a label to my own back, and demonstrating some other questions, such as "Would you recommend me for a job at your company?"

    After that, I asked people to discuss what they thought was the purpose of the exercise. How many friends did you make? How did you feel while you were doing it? What other consequences, beyond bad feelings, might there be for having your assigned reputation?

    Later, we did another discussion, after the many examples of "advocacy" and better ways of talking about autism. This part had questions like When someone said that (train wreck, etc.) about autism, what was the underlying message? Who was the intended audience? Do you think this could be harmful to autistic people? And for labels that were more about describing challenges, is there a better way to say it?

    Both parts worked in encouraging group discussions in which nearly everyone chose to participate.

  10. I hope someday you present in the SF Bay Area so I can see/hear you and also tell you in person how much you have helped me be a better mother to my dear boy. Congratulations!


  11. Bev,
    this is excellent. I especially like the idea of listening in a non-judgemental way. One of the problems with the "Autism Wars" is that we judge people by what we perceive their position to be. By listening we learn what they really think.

  12. Yay, Bev! And I love that picture of Ari and Squawkers!

  13. Semi off topic here, but:

    CNN recently had an article about how some public schools make excessive use of seclusion as a form of punishment particularly for children with disabilities, including Autistic students:

  14. Merry Christmas Bev!


  15. You're so thoughtful, Bev - this sounds like an excellent session and I'm so admiring of your being willing to stretch to do it.


Squawk at me.
Need to add an image?
Use this code [img]IMAGE-URL-HERE[/img]