If you ever want to restore your faith in humanity and bolster your hopefulness that we have the capacity to create an environment of true inclusion and respect, then do yourself a favor and get thee to the next ICI Summer Institute. Many of the offerings of Syracuse University's Institute for Communication and Inclusion are probably equally worthwhile, but since we've just returned from the 3 day Summer Institute, that's what I want to tell you about. The experience of being part of this gathering was profoundly moving.
For three days, Oliver and I were among nearly 300 other people coming together to talk about how to better support individuals who communicate primarily through typing. As I wrote in an earlier post, I was maybe like some of you reading this, skeptical about the whole concept of supported typing. And maybe if Oliver hadn’t shown me the way last year as we worked it out on our own with handwriting, I might never have looked at facilitated communication seriously as something worth exploring. What we did together was organic and intuitive if incredibly low-tech. But it was clear that Oliver would need to type if he ever wanted to communicate and be understood by a broader audience. At home I quickly realized that typing would not, at first, follow the same organic, intuitive path by which handwriting unfolded for us. By the time we arrived in Syracuse, we were ready to embrace whatever support we could find amid a group of people who have spent their lives helping people like Oliver to achieve their full potential through communication and from the many, many individuals who have found a way to make themselves heard despite the inability to speak. I came with an open mind and I left with a grounding in a specific set of skills based on widely accepted teaching philosophies and an enormous respect for everyone I met.
Presuming the competence of all individuals to be intelligent and to be capable in determining the course of their own lives is not just an idea, it is a fast-held belief and constant practice for the people I met in Syracuse. The most profoundly moving part of the three-day experience for me was to be surrounded by professionals and parents who treated those individuals with disabilities that they supported with respect and the presumption of competence. You might ask what I found so moving about actions that most probably agree is the standard for how we should treat all people without question or regard for ability. Who among us thinks there is an exception to the Golden Rule? But the truth is that it is too easy to treat someone in a manner consistent with our assumptions based on nothing more than that person’s appearance and behavior.
I know this to be true because (and here is my first shameful confession) I am as guilty of it as anyone. Before Oliver gave me a reason to question the assumptions I formed about people with disabilities I’m sure that without any real consideration, I assumed that if a person could not speak or if they behaved in a way that I didn’t understand, that they somehow innately lacked the ability to express themselves in an equal and reciprocal way. In short, I didn’t expect much of them. And further, because of my assumptions I was so uncomfortable about my inability to interact in a way that was prescribed by social norms that I never spent the time trying to consider that other person at all. Ironically, the impairment was all mine, because if it had occurred to me that the solution was simply a matter of presuming competence, then I would have had a basis for embracing my role in the social interaction as I would with any other person I meet. Had I done this, my discomfort is likely to have evaporated, opening a whole world of possibilities for friendship and growth.
Parenting Oliver gave me a sharply distasteful dose of what it feels like to be on the receiving end of this kind of thinking. Or perhaps I should call it non-thinking. No words of assurance from me would convince people – doctors, teachers, therapists, friends, family -- to abandon whatever assumptions they made about Oliver’s intelligence based on his behavior or performance. In all the years of his life, I can think of hardly anyone who treated him with the presumption of competence. I was very lucky, in that one of the very first books I read after Oliver was diagnosed was Douglas Biklen’s: Autism and the Myth of the Person Alone. Although there were a lot of ideas competing for my attention in that first year of knowledge building, the idea of Presuming Competence that is the basis for this book, thankfully, stuck with me throughout.
And yet. …
A funny thing happened in March 2011. Over the course of just a few short days Oliver demonstrated to us that he could read and write and communicate to a much higher degree than we imagined. My second shameful confession of this post is to admit that, although I had always believed in Oliver, during that period the way we treated Oliver changed virtually overnight. Let me say that again: even though I thought I was parenting from a place of presuming competence, the way we treated Oliver changed once he demonstrated his abilities in a way that we valued. Oliver was the same kid he always was but the subtle shift in our behavior was noticeable enough that it became a frequent topic of late night conversation and self-flagellation for both Nik and me. Our assumptions about what Oliver was processing, thinking and feeling turned out to be inadequate and misleading.
Oliver is now typing every day. He is telling us his thoughts (sometimes not always what we want to hear) and helping us better understand what kind of support he needs and it is getting easier for both of us. He now has an e-mail buddy – another boy of the same age who types. And I have connected with other parents who have had the same experience watching their non-speaking child of varying ages finally find their voice. I was surprised to find just how many of us there are out there.
I can’t tell you if the people we met in Syracuse were any better at presuming competence from the beginning than we were. But each and every one of them is a role model for me as I continue on this journey with my son.