After Wooster, Part One: Vox humana

There's a great deal I could take away from my visit to the College of Wooster to give a speech last week.

I could share stories about good work being done by extraordinary people, or interesting new technologies and how they are being implemented by educators and therapists and companies like PRC (whose headquarters I visited and who couldn't have been nicer to me). The truth is, I took away more than I could ever explain. Wooster was a transformative experience. I showed up on Monday one person; I left on Wednesday a wholly different one.

But what I really want to talk about is dignity. Self-determination. What it means to be human, and to have value, and to recognize that value. And what it truly means to communicate.

Because this is the work being done. Its not about speech technology, or therapy, or language systems. Not entirely, or even mostly.

In part, it's about tools. After Wooster, I am more convinced than ever that the key to successfully unlocking communication among the nonverbal like Schuyler lies in giving them a toolbox that is bursting with options, many of them self-driven and perhaps hard for most of us to grasp, and then to get out of the way and let them take the lead in how they can most effectively and comfortably make themselves truly heard. That sounds obvious, but in fact it's an idea that frequently gets lost.

Many of us are out there trying to help our kids or our students or clients, and far too often we want so much to give them a magic pill that we ignore how we ourselves communicate, not just through spoken words, but through facial expressions, gestures, miming ("I said I'm walking against the wind! Also, I'm trapped in a box! Come on..."), text messaging, note passing, whatever. We don't think about this toolbox because we're accustomed to having a spoken language default. And I suppose we think in terms of a primary tool when we try to assist our nonverbal charges, to the point that we really only give them one or two big, impressive tools to be used in specific ways, dictated externally by others to somehow enable and allow expression of what's within. God knows I've been a serial offender in this regard. More ways to communicate means more options, and more possibilities. Using one tool does not make you less likely to use another. ("If he uses AAC/sign language/whatever, he won't be compelled to develop verbal speech.") It's a popular misconception, and it simply doesn't work that way.

The reality of communication defies the magic pill. Lindsey Cargill, speech language pathologist at the Helping Hands Center for Special Needs (and tireless advocate), points to a 1976 study by Mele Koneya and Alton Barber. It shows that a person's message is comprised of 55% body language and 38% facial expression and intonation. That leaves just 7% for the actual words themselves. Another study from 2009 shows that gestures are processed in the same part of the brain as spoken language, illustrating that gestures themselves are linguistic in nature. A third study found that kids with autism who gesture are judged socially to be more communicatively competent than their peers.

The other tools matter. And we need to pay attention to them, and treat them with seriousness when they are hard to read most of all. Depending on a single method of communication, one that we deem to be somehow appropriate or ideal, ignores the reality of how we communicate.

It can be complicated, too. In a way, Schuyler is the perfect illustration of how those tools really do matter. Her reluctance to use her AAC has grown over the past few years, in large part I believe because in everyday social situations, she brings all her tools to play. Facial expressions, gestures (oh, the gestures) and her intonation have been doing the heavy lifting for a while now. She's reached a critical point where she needs to seriously refocus on AAC to give her the ability to independently express herself more comprehensively and creatively.

How did that happen? How did a kid as deeply invested in assistive speech technology reach a point where she needs to recommit her efforts (and more to the point, the efforts of her team) to robustly utilize her speech technology? I believe it's because she has embraced the temptation to "pass" as much as she can as neurotypical, as most of the time, she's succeeded. I never want her to feel like she needs to pass, to hide who she is, but she's a thirteen year-old girl in the world of middle school. The pressure to fit in is enormous.

For Schuyler, and for a lot of nonverbal young people, there's a contradiction to be sorted out. She wants to be like everyone else, but at her age, communication has become central to that for her peers. Thirteen year-old girls talk, a lot. And it's a very specific kind of talk. It's constant, and seemingly random but loaded with subtext. For Schuyler to be a part of her peer group, she's going to have to find a way to truly join that conversation, and that is probably going to mean embracing her speech technology in a way that she's reluctant to right now.

The tool sets her apart. The tool gives her a kind of comprehensive language that she otherwise lacks, but it does so at a different pace, and in a way that is inherently unnatural. Our challenge in the coming months is to refocus her, yes. But it is also going to be to reconvince her. That's going to take some work.

Which is fine. I think it's going to be okay. I believe in Schuyler, as always, and in the possibilities. I've become a big believer in her future, and in my own. Our whole world seems transformative now. It's a compelling feeling.