At The Stutterers' Convention
By Marty Jezer
A copy of Marty's weekly newspaper column for Friday, July 13th, 2001.
I recently attended a self-help convention for people who stutter: more than five hundred people from all over the country, including adults and children, their parents, partners and spouses, speech pathologists and speech researchers, all meeting together for four days at a hotel in Boston. I've stuttered all my life and have come to be pretty good at it. I've been attending these conventions for almost twenty years and the experience has changed my life.
What happens at a stutterers convention? Participants give workshops, make speeches, party, and talk and talk and talk. And if we stutter when we talk, as most of us do, we do so openly and without shame. And therein lies the significance of the stutterers convention. It's not only about stuttering; it is about empowerment, self-acceptance and overcoming fear. It's about resisting the cultural pressure of feeling a need to be (what society considers) "perfect." It's about (the lesson that the gay and lesbian community taught the world), the liberating experience of "coming out" and feeling the power to be oneself.
Stuttering used to be considered a "learned" behavior, or a result of nervousness, anxiety, or some other neurotic disorder. These theories are discredited, definitively so. The best evidence is that stuttering, at its core, is a complex genetically-based neurological disorder. That doesn't mean that there is one faulty gene that causes people to stutter. Likely it's a combination of genes dealing with the way the functions of motor-speech coordination interact with those parts of the brain that process emotional or psychological stress. The bottom-line is that psychology does not cause stuttering; but any adult stutter who is not affected psychologically by his or her stuttering is in denial.
No stutterers stutter alike, that's one of its mysteries. The syndrome ranges from mild to severe and is affected by situational factors. In my experience there are two aspects of stuttering. One is the disfluency itself, the frustrating spasms of broken speech. The other, just as debilitating, is the fear of speaking that results. Stutterers learn to monitor their listeners. We pick up the first trace of unease and discomfort. We're used to people turning away from us when we speak, or giving us "the look." Most stutterers learn early in their lives that it's easier to keep silent (even if they have something to say) than it is to risk stuttering when they talk.
Some stutterers learn to hide their stuttering by word substitution (they always have big vocabularies), facial or body movements, and other tricks. These covert stutterers live in fear that they might show their stuttering; and this fear can control their lives. I'm an overt stutterer. I couldn't hide my stuttering if I tried - and I have. It's taken me a long time to gain the strength to stutter comfortably, without feeling humiliated in the process.
Children respond to therapy (the younger the better); adults less so. It's easy to be fluent in a clinical situation; the real challenge is taking that fluency into the everyday world. Therapy has helped many people, but relapse is common and there is no sure-fire, guaranteed cure.
Too often, at least in the past, speech therapy focused on the mechanics of speech. Therapists believed that stuttering was curable, that if stutterers learned how to speak fluently the psychological-baggage of stuttering would fall away. Stuttering, they taught, was something to be ashamed of and, hence, had to be eradicated. Those who failed at therapy didn't practice hard enough and had only themselves to blame.
The self-help movement evolved as a challenge to this perspective. We said that feelings of shame are as debilitating as disfluent speech; that stuttering is something we do, not who we are; that attitudinal and emotional issues are important; that self-acceptance and effective communication (rather than 100% fluency) should be therapy's goal.
At first, therapists opposed the self-help movement as the adults who failed therapy. But some of the best therapists understood what the movement was saying and came to our conventions to listen and learn. Now we work and learn together. The best therapists understand that attitude is important, and that people can be good communicators even if they stutter and stumble on many of their words.
The cutting-edge stuff is with children. More and more young people are involved in the self-help movement, as are their parents who help one another and give their kids support. Young children who stutter learn that they are not alone. They are encouraged to be open about their stuttering and to not feel humiliated if they stutter when they talk. Some elementary school kids have talked about their stuttering in "show and tell." They explain what it is (that is, normalize what once was mysterious) and thus make allies of the other children. When I was in elementary school there was another boy in my class who stuttered. We never talked to one another; indeed, we were ashamed to be seen together. Take away the need to hide one's stuttering, and the world opens up.
The best thing about the stutterers convention and the self-help movement itself is the way people become role-models for one another. I came out of my own speaking-shell because I saw others accepting the challenge of overcoming their fears. We all become teachers in the stuttering community, inspiring one another and passing the spirit on. Because we can talk about our stuttering, we can confront those who turn away from our broken speech (and who, in the past, would shame us into silence). Perhaps they're confused and don't understand that we stutter. Being open empowers us to educate them and to diffuse situations that once made us cringe with embarrassment.
The convention I attended was organized by the National Stuttering Association, the largest support group for people who stutter in the world . Speak Easy is a smaller regional group in the Northeast. (233 Concord Dr., Paramus, NJ 07652-4543). Friends: The Association of Young People who Stutter is a wonderful organization for children and their parents. It's convention is in Chicago, July 26-28 (russnro@... or 1220 Rosita Rd., Pacifica, CA, 94044-4223). The Stuttering Home Page, accessed by any search engine, contains information about these organizations and anything else one would want to know about stuttering.
