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A Partnership

region10I’ve had a pretty good run in the area of public speaking. Since my book Schuyler’s Monster was published in 2008, I’ve done over thirty-five appearances, mostly at disability-related conferences and workshops. It has been an honor to do so, and frankly kind of a surprise. I never set out to do advocacy work in the very beginning, and now it has become the most fulfilling result of becoming a fancy pants author. Until yesterday, my appearances followed a pretty standard format, which was basically me standing up and jabbering until I ran out of speechliness or until someone waved me off or the audience pretended to be dead. My speeches became a little more about disability rights as the years went on, and I had to print them off in a slightly larger font as I got older, but other than that, things didn’t change much.

Until yesterday. Until I teamed up with a co-presenter.

We’ve always encouraged Schuyler to take on more and more self-advocacy as the years have gone on. I’ve been speaking and writing on her behalf since she was a little girl, and I’ve accepted the criticism that naturally comes for taking on such a public representative voice for a very young child with a disability. Much of that criticism was of the “who do you think you are to speak for her?” variety, and it’s a fair point. But rather than push back against it as she got older, at which time I would have gone back to writing about being a dumb old man and classical music that no one cares about (Fair warning, that’s still my plan one day), Schuyler has incrementally embraced a role as an advocate for people with disabilities like her. Now, at fifteen, she’s taking another big step.

When I stood in front of about three hundred and fifty attendees at the Region 10 Education Service Center’s Summer LifeSkills Boot Camp 2015 to speak on the topic of “Ten Years of the Big Box of Words”, Schuyler was seated next to me. In the weeks before the event, she carefully wrote an introduction for herself, and a paragraph of her observations about the assistive technology class she attended in elementary school, the one for which we moved to Plano, Texas in the first place. She also answered thirty-five reader-submitted questions. Her contributions were programmed into her device and interspersed throughout my speech. She spoke with her iPad and her speech software, her crisp British accent amplified by microphone for the audience. (Note to prosthetic voice developers: a Texas accent is desperately needed. I’m not kidding.)

In regard to how she was presenting, I felt it was important to say this first:

Now, in the interest of time, and also because she’s a little nervous about presenting today, Schuyler wrote her part of her presentation on her iPad, as well as the answers to some questions we’ll hear later, and we’ve programmed them into her speech software. I wanted to point this out because while it works well for a presentation like this, it does not accurately represent how she communicates on a daily basis. When she communicates with her iPad, Schuyler tends to move back and forth between her icons and simply typing out what she wants to say, usually utilizing word prediction as much as she can to cut down the amount of time it takes to put together what she wants to say. Schuyler depends on the patience of her audience, much like Professor Stephen Hawkings does when he speaks. But like Professor Hawkings does in his public appearances, we’re also going to cheat just a little today.

So no, it wasn’t really how she would answer questions in real time. One day, I feel confident that we’ll get there. For now, Schuyler prepared by programming her responses into the speech software in their entirety. But aside from a little help with her grammar (very much at her request), the words were entirely hers, as were the thoughts. We actually contradicted each other a few times, such as when I bemoaned the end of her AAC class and then she said “I learned a lot about how to use my devices back then. I don’t think I need a class now but I miss being with my other friends who talked like me.”

Schuyler was a hit. She got applause every time she spoke, and I think she impressed a lot of people who weren’t necessarily aware of the possibilities that assistive communication technology can represent for users like her.

You may consider this a new policy of mine. I’d love to come speak at your conference, but just so you know ahead of time, you should be prepared to buy two plane tickets. I’m going to have a partner from now on, advocating for herself in her own strong voice. This is the path she’s chosen, and I couldn’t be more proud. With every presentation we give, I expect her to take on more and more of the content every time. This is appropriate for a young adult coming into her own as a self-advocate. This is a part of a future which she will write for herself.

My favorite answers of hers to specific questions, and the ones that got the most approving responses from the attendees? There were two of them.

What made you decide to dye your hair?
I want to be different but I want to pick how I’m different.

What do you want to do in the future?
Maybe to help sick children and the poor and people like me with little monsters of their own.

I think she’s already begun.

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4 Comments
  1. Julie
    August 4, 2015 | Reply
  2. Kris
    August 4, 2015 | Reply
  3. Sheila Fuesting
    August 4, 2015 | Reply
  4. Sheila Fuesting
    August 4, 2015 | Reply

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