A Genuine Advocate and a Frank Conversation at SXSW

Taking Schuyler to SXSWedu and SXSW Interactive for the panel on which I participated, Autism APPtitude: Using Apps to Target Skills, turned out to be an incredibly positive experience. I was easily the dumbest person on the panel, which is always a good starting point. Woe to the panel on which I’m the smartest person. Both festivals had their strengths and their shining moments, but it was at the Interactive session that Schuyler stepped up and took a little agency. She came up to the presenters’ table, and after her iPad was plugged in and her words were projected onto the screen, she demonstrated how she uses it to communicate. As other panelists continued speaking, Schuyler kept typing, at one point telling the gathering “We’re awesome and smart and helpful.” I see it every day, so it’s not exactly game changing to watch her, but the attendees seemed to be moved by the possibilities demonstrated by this young teenager, very much a child but perhaps not for much longer.

“I wrote poetry as a child,” tweeted one attendee. “Moved by @rumhud and the story of his daughter finding her voice as a writer using an iPad.”

“@rumhud’s personal story about his daughter (and her subsequent app use on stage) made #autismapps the most unique session at SXSW,” said another.

That’s very generous. Honestly, any time I reach someone when I’m speaking or writing about Schuyler, as much as I’d like to believe it’s because of my skills as a writer, the truth is that she’s her own most compelling story element. When she stood up and demonstrated just the basics of how her speech app works, the interest from the attendees was something you could sense immediately. We’d been talking about how this technology can work, and how it can transform lives. Schuyler put a face to that. She showed how the theoretical becomes real. And she did so despite more than a little bit of nervousness. I was immeasurably proud of her.

There are moments like that when I see what real advocacy can look like. Not from me, not at all. I can see how Schuyler might be growing into a kind of self-agency where she’s making choices and demonstrating to the rest of us just what the world might look like if we can make it accessible to everyone. Not just accessible in the legal or logistical sense of the word, but in ways that I can’t even begin to imagine. Accessible in ways that are meaningful, and equitable.

I had a conversation with an educational app developer while we were at SXSW. When I told him the name of my panel, I also explained that Schuyler isn’t actually autistic, but the communication and developmental issues that her polymicrogyria present are very similar to those faced by many in the autism community. I also pointed out that fairly or not, in our media and our popular culture, and also in the arena of public policy, autism usually stands as the face of disability advocacy, particularly for developmental and intellectual disabilities. As goes autism advocacy, I said, so largely goes disability advocacy in general. So I wasn’t hesitant to participate in a panel discussion that focused on autism issues. The rising tide lifts all the boats, etc.

He shook his head and said, “I agree completely. And that makes it hard for companies like ours. I have to confess that it’s not a stated policy or anything, but we do avoid partnering with disability groups specifically because of the divisions within the autism community. We’ve seen what’s happened with groups like Autism Speaks, and to tell the truth, I think the feeling is that the only way to avoid negative blowback is to simply avoid direct involvement with disability organizations at all. And I know we’re missing out, because we’re developing stuff that really could make a huge difference. But from a business standpoint, it makes more sense to just do what we’re doing on our own.”

I was thankful for his frankness. I’d never heard anyone come out and admit that their company had been spooked by the internal divisions of the disability community and the enthusiasm with which we seem to embrace the concept of the circular firing squad. But it was also deeply depressing to be reminded that the world is watching. If Schuyler does decide to become a disability advocate, the rest of us aren’t making that role any easier for her. Her boat isn’t being lifted, I don’t think. It might be taking on water.