Photo of Stephen Kuusisto holding a white cane and standing beside a sign that says “Use Vision”.
Some days I admit I don’t know what to think. I feel like the linnet high in the apple boughs, tricked by light. That’s one of the things about my version of blindness: its brilliant, confusing, and beautiful always. This fact reflects my larger life, what we might call the life of the mind if we were in a literature classroom. The life of the mind for me is bright, confusing, driven by accidents of geography, and often despite the joys, the business of mentation is tiring. In the realm of disability studies the operative stance toward the successful disabled self is centered around the resistance of inspiration–successful people with disabilities don’t want to be known as being inspirational. But despite the conditional reflection of independence and egalitarian citizenship, disability is often hard and triumph is steep. I’m often fatigued by my brand of blindness. I take way too much Advil for daily headaches caused by stress. Reading and writing are challenging things. And I live with the self-directed impulse to make this all appear easy. I’m in mind of these things because I’m attending the Syracuse University Institute on Inclusion and Communication, a conference devoted to autism and language.
All around me are people for whom language and community are “dear things”–things precious and challenging. I see non-speaking autists typing sentences, parsing their seconds, carving meaning in expectant air.
When I was a young writer and studying poetry at the University of Iowa I had the habits of an aesthete: my desk had to be in the right location, light had to fall on the page in the proper way, my pencils had to be arranged just so. These were the habits and accommodations of an anxious young man who wanted to make a difference in the world with his art. I remember my 24 year old self with affection. He meant well. He wanted to make topiary gardens with words. I suppose now that I think about it I was Edward Scissorhands with a typewriter.
Nowadays I can write anywhere. The airport, on the plane; right now I’m in the lobby of the Syracuse University Sheraton. There’s some kind of Muzak coming from a speaker in the hanging tiles behind me. And a woman with her autistic grandson is looking at family photos across the way. Its a busy world and writing has to keep up. I still have my precious desk in my closeted study but I write all over the place. I write because my disability dictates it. Because I can’t afford the 19th century atelier. I’m busy, exhausted, depressed, anxious, confused, cerebrally itchy, struck by the beautiful or made angry by injustices–and take them together or separately I don’t have time to loiter with words the way I once imagined I might.
My autist friends, typing for their lives are really my brothers and sisters. We write so the world will do more than presume our competencies–we write for our place at the table.