My disability experience begins with stuttering. I have stuttered for as long as I was able to speak. Stutters take many different forms; mine expresses itself as a verbal block. Rather than repeating words or sounds, I am sometimes unable to say the word I want to say. The blocks are accompanied by involuntary facial expressions, and my eyes often roll back into my head—which I was wholly unaware of until a third-grade schoolmate pointed it out, in the way that third-graders do.
I attended speech therapy nearby university for about three years. This was the early eighties, and my therapy for stuttering consisted of being presented with pictures, commonplace objects, or toys, and being asked to tell a story about them. As I did, the speech therapist would take notes and offer instructions: slow down, breathe, enunciate, “let’s try that again.” As anyone with any experience with speech disabilities will know, this guidance did nothing to make my stutter go away. It did, however, demonstrate that people did not have the patience to hear what I had to say in the way that I needed to say it.
If my childhood and adolescent experience of stuttering was Dante’s Inferno, the devil sitting in the innermost circle was my own name. It’s not uncommon for people with speech issues to have trouble saying their name, and mine would reliably get stuck on the back of my tongue. There’s no way to measure the amount of social anxiety this created for me as a kid—dreading the first day of school when everyone had to introduce themselves to the class, meeting new kids on the playground, and all the day-to-day interactions that required me to perform this one simple task that everyone else seemed to be able to do without even thinking about it.
The anxiety didn’t stop with my childhood, but folks’ reactions grew sharper and more sophisticated. Instead of simply laughing at me, or mimicking my head movements and gestures, they would ask me if I’d forgotten my name, if I was having a seizure, if I needed someone to perform the Heimlich maneuver. It wasn’t until I was in my 20s that I began to understand this as an expression of discomfort on their part. I’d thrown them a curve ball. If we were in the middle of shaking hands, they didn’t know what to do. Let go? Keep touching? Something in between? I realized that the way people react in sudden, unexpected circumstances instantly revealed something about them. It gave me information about their personalities, very quickly. People who insulted me or asked demeaning questions were people on whom I didn’t need to waste time. They didn’t need to know my name.
But then there were people who reacted the other way. People who waited patiently, who didn’t end the handshake, who I would find still listening once my name was out of my mouth and my eyes had returned to their original position. I got to learn their names, and these people became my friends.
The place where my disability intersects with technology is the telephone. I was barely able to use it for most of my life, and this was another vortex of anxiety. I have been hung up on countless times because the person on the other end of the phone thought I was a crank call. And as hard as it was to say my name in person, it was nearly impossible over the telephone. Whenever I started a new job, I would explain to my boss and my coworkers that using the phone was difficult for me, and it would be great if I could get a pass on using it. This was met with varying degrees of acceptance, and my length of time in any given job was directly related to that degree.
Before email and texting came along, people often framed my inability to use the phone as a major shortcoming, an inability to reckon with how everyone else in the world communicates with each other. And I internalized it. My request for an accommodation from my employers didn’t spring from a well of confidence, self-awareness, self-respect; I was begging not to be kicked out of my seat at the table. What I understand now—what informs my life and my work—is that I wasn’t failing the telephone. The telephone was failing me. It was technology that had been developed without any thought for speech disabilities. Or Deaf culture. Or blind people. It was created by and for people with able voices and bodies as defined by ableism.
I am not one of those people.
More . . .
This radio commentary about my stutter was the September 2, 2003 edition of the Perspectives series on KQED-FM in San Francisco.
What’s more interesting, though, is the collection of odd, humorous, and sometimes disturbing things I do to get words out of my mouth. I roll my eyes back into my head in pure horror-movie style, as if possessed by a demon. I also turn my head slowly from side to side, as if easing the consonants and vowels through their invisible obstacle course. I have no idea why these things work, and they’re not always voluntary.
But the most insidious thing about my stutter is what you’re hearing right now. If I sit down in front of a live microphone, the stutter simply evaporates. When I was a teenager, this led me to believe that if it could go away some of the time, it could be eliminated entirely. The right set of thoughts, the perfect conditions, the magic words, would throw a rope around my stutter and haul it in for good. I wouldn’t figure out for many years that my stutter’s capricious, random nature is also part of the disability. Approaching it as a riddle with a single answer is to give in to the crazy cycle of fluency and disfluency. The only solution is to accept the absence of a solution.
In my most enlightened moments, I embrace that absence. I move with my verbal blocks and repetitions the same way a dancer moves with his partner. The rest of the time, I’m like everyone else; struggling with my own personal version of imperfection.