by Marty Jezer
Like other stutterers, I live on both sides of the disability dilemma. As long as I keep silent, I'm completely normal. Indeed, my persona is that of poised and focused friendliness. But every time I talk, I put this identity on the line and risk the loss of whatever confidence I've been able to muster by being silent. The need to speak and the probability of stuttering are -- as with most stutterers -- the dominant facts of my life. I have sometimes planned my day so that I won't have to risk stuttering in public. The most commonplace telephone call can be a terrifying experience. Asking for a date has at times seemed unimaginable. Ordering something I don't like in a restaurant has often been preferable to ordering something that I can't say. I'd rather be late, lost, and driving around in circles than have to ask a stranger for directions to my destination. The irony that has governed my life is that despite my severe stutter, I live by talking. Efforts to cultivate an identity as a strong, silent type have, despite my best intentions, been consistently undermined by my gregarious nature and my delight in conversation. It has taken me most of my life to accept the fact that the only way I can be true to myself is to forget my stutter and to not fear talking. As a stutterer who is always afraid of speaking but yet is rarely able to keep his mouth shut, I have a story to tell.
I want to write a book about stuttering that, by necessity, will also be a book about speaking, silence, and the pleasures and pitfalls of everyday communication. As a person who can never take fluent speech for granted, I want to address the complex dynamics of verbal communication and describe the barriers that are erected when the mechanics of speech break down. I see stuttering not only as a disability that is challenging to live with and difficult to overcome, but as a metaphor for other impediments -- physical and psychological, real and imagined -- that inhibit so many peoples' lives.
Everyone has flaws, after all. Even fluent people are often terrified of speaking in public. Some people see themselves as being either too fat, too thin, too small, too tall, too ugly, too awkward, too oafish, too this or too that -- suffering always in comparison to the perfection we perceive in others. The pursuit of perfection is a characteristic of our media-driven, celebrity-conscious society. Many people, earnest in their desire to succeed, strive to achieve an ideal that few people can meet -- and blame themselves when they fall short of their goal. The idea of perfection -- whether it be in health, beauty, athletic ability, or in something else -- engenders a negative self-image and feelings of inadequacy and defeat.
A Life Bound Up In Words will be semi-autobiographical. The chapters will integrate my own life story as a stutterer with the insights of speech therapists and psychologists and the experiences of other people who stutter, using the autobiographical sections to frame more far-reaching discussions -- not only about speech and stuttering, but about issues of self-esteem, identity, disabilities, self-help, and, on a broader level, the distorted values that drive individuals in their quest for perfection.
The book will be begin and close with an account of my experience as a guinea pig in a study conducted by the National Institute for Communication Disorders at the government-run National Institutes of Health [NIH] to test a drug, Clomipramine, that some medical researchers believe might help people who stutter. Although theories abound, the causes of stuttering are still unknown. The most interesting hypothesis, and the one on which the NIH study is based, is that stuttering has a neurobiological origin; that is, it is caused by an organic disfunction of the brain. Evidence indicates that the predisposition to stutter is inherited. Under situations of stress, the complicated neurotransmitters that coordinate the mechanisms of speech misfire or otherwise run amuck. Scientists have not yet traced the exact neurological failure and, given the complexity of speech, the breakdown is probably multifaceted and different for every one. Moreover, stress is a subjective phenomenon; what's stressful for one person is a goof for another. For example, most, but not all, stutterers have difficulty speaking to authority figures whether it be their parents, their teachers, or a police officer who has stopped them for reckless driving. Almost everyone who stutters, on the other hand, can speak fluently to animal pets and to babies who can't talk back. Some stutterers do well reading aloud from a printed text; I do better winging it. Some do well speaking before an audience of strangers, but public speaking terrifies me. I'm more fluent with meaningless banter than I am in a serious conversation with heavy intellectual stakes. But often in a serious conversation the intensity of my convictions overwhelm the fear that I feel as a self-defined stutterer and cut short the stress that provokes my speaking mechanisms to go awry. At that point my brain seems to get into a groove and, for as long as I am focused on the substance rather than the process of speech, I become a passionately fluent speaker.
The theory behind the Clomiphamine study, simply put, is that under conditions of stress, Serotonin, a neurotransmitter surges from the right or emotional side of the brain into the left side of the brain and blows the complex neurological connections that control the mechanics of speech. Clomiphamine is known to affect the action of Serotonin. The researchers hope that it will inhibit the emotional overload on the speech circuitry.
The narrative will begin with my swallowing the first pill and wondering what I will do if, by the miracle of chemistry, I am suddenly rendered fluent. After 50 years of striving to create a positive self-image incorporating the fact of my stutter, I might suddenly find myself in a full-blown identity crisis. If I'm not the stutterer I've always known myself to be, who then am I? And what will I become if all of a sudden my stutter is gone? Although I volunteered to try this pill, I am ambivalent about the notion of a pharmaceutical cure. But with a desperation typical of most people who stutter, I am willing to swallow almost anything to rid myself of what I generally feel (despite a determined effort to maintain a positive attitude) is a horrendous disability.
I'm also worried about the side effects of ingesting a powerful chemical. What would I give up for fluent speech? Is fluency a fair trade for drowsiness, constipation, physical sweats, shakes and tremors -- and impotence -- that the doctors at the NIH say are common, though temporary, side-effects of taking Clomipramine? When does the urge for self-improvement take on the qualities of a Faustian bargain?
By beginning with my participation in this experiment, I create a tension in the book's structure. Readers will immediately want to know if the pill worked and what its effect on my life has been. The final chapter will close with an account of my experiences on Clomipramine. I wish the book could announce an actual cure for stuttering, but the pill didn't work for me, or for most of the other people in the experiment. Moreover, the side-effects were so bad (I seemed to have suffered the worst of anyone in the study) that in the middle of the experiment I decided that even if the drug made me totally fluent, I would be better off stuttering. Nevertheless, I believe that the theory behind the experiment is promising (and I will briefly review the most recent discoveries about the working of the brain). Despite the disappointment, the experience reaffirmed what will be a major point of the book, that what counts is the willingness and perseverance to rise above one's fears and not get caught up in striving for an abstract notion of perfect speech and the impossibility of a perfect existence.
I will begin the main text with an account of the onset of my own stuttering problem. Like most adult stutterers, I began stuttering when I began talking. What caused it? A blow on the head? A psychological trauma? My left-handedness? The uptight and judgmental way my parents reacted to the first incidents of my stuttering? These theories, among many, are all considered. My mother recalls that when I was still crawling, a mouse ran across the floor on which I was playing. Despite the assurance to the contrary from speech therapists and child psychologists with whom she and my father consulted, she always wondered if it wasn't the mouse scampering across her living room floor that caused me to stutter.
Moving from the particular to the general, I will describe how thoughts and perceptions about stuttering have changed throughout history. Many of the supposedly scientific theories about stuttering that were considered authoritative in their time seem just as crazy as the fluency-demolishing mouse that so impressed my mother. Most children at the age of two or three experience bouts of disfluency that they quickly and naturally outgrow. Speech therapists can usually distinguish between disfluency that results from the newness of speech and disfluency that is rooted in a genetically inherited predisposition to stutter. One famous theory about the origins of stuttering, originated by Dr. Wendell Johnson of the State University of Iowa, places the blame on adult listeners (usually the parents) who, in reacting negatively to a child's natural disfluency, make the child self-conscious about speaking and thus start him or her down the road of serious stuttering. Johnson's advice, that adults should react to a child's difficulty with speech by ignoring it, is a good one. Although his theory has been convincingly refuted, vexing feelings about guilt and blame are commonplace in families of people who stutter.
I never outgrew my stuttering; indeed, the more verbal I became as a child the more severe was my stutter. Consequently, I was dragged by my mother from one child psychologist to another and for most of my adolescence to twice-weekly sessions of speech therapy. The best advice my parents ever got from the experts (in this case, from a child psychologist) was the suggestion that they encourage whatever it was that I liked to do and was good at, even if it was foreign to their own interests or different from the aspirations that they had for me. My parents did the right thing by encouraging me to find my personal strength as a street kid, playing sports and hanging out with my friends. This was in the Bronx, New York, during the late 1940s and early 1950s. Many people consider this to be New York City's "golden age," and the book will provide warm-hearted descriptions of what I recall as the privileged social milieu and physical setting that contributed to my inner self-assurance. Thanks to the acceptance I felt from my friends, I recall childhood as a happy time in which my stuttering didn't seem an important handicap.
But memory is a trickster. People make use of it not only to search for an objective truth about their past, but to construct a personal history that serves the image that they have of themselves -- or want to project for themselves -- in the present. I could easily create another story of my childhood, one, just as true, that was a continuous series of embarrassments and humiliations.
An embarrassing incident, for me, is something that I can quickly shrug off and forget. It is usually a result of my stuttering in public, something I do so often that it no longer comes as a shock. Humiliation, however, cuts deep. It is often triggered not by an incident of my stuttering but by my feeling of being recognized as a stutterer. The shame of being identified and defined by my disability is overwhelming. The sensation becomes etched into my consciousness and the pain absorbed by my very being. Thirty and forty years after the fact I can still feel my gut tighten as I recall the humiliation of these incidents.
A humiliating incident can be as trivial as a momentary glance in my direction. As a teenager, I went with a friend to see the British comedy, "I'm All Right, Jack." In one scene a wizened old trade unionist severely stutters as he tries, incomprehensibly, to articulate his support for a strike. The scene is a cheap shot at rank-and-file trade unionists; they can't effectively articulate a reason for going out on strike. What upset me was not the movie's retrograde politics, however. Instead, I felt shame because my friend turned towards me to gauge my reaction to the stutterer in the movie. Correctly, she had understood that I would identify with that stutterer, and, as I interpreted her glance, she wanted to see if I was as embarrassed by the portrayal as she (as I projected my feelings on to her) thought I ought to be. As for myself, I was admitting to nothing. My response, typical for me, was to steel myself against any show of emotion. "I'm All Right, Lynn," was the message I wanted to convey by my frozen body language. But I felt naked just the same, as if all my efforts to cover up my stuttering problem were stripped from me. Although I often stuttered in talking to her, I could not tolerate her recognizing me and (as I interpreted it) defining me as a person with a stutter. I literally never spoke to her again after that movie.
My way of coping with my disfluent speech was to deny that I had a disability. When people would ask me about my stuttering, I would give them my best smile and say, sure I stutter but it doesn't bother me at all. This was my pat answer for more than 40 years. The truth was that my stuttering was the defining fact of my life. If I couldn't hide the fact of my stuttering, I could at least try to conceal the suffering that it was causing me.
Why did I become so dogged an optimist, determined to repress my suffering, deny my pain? Others whom I will interview surrendered to their speaking difficulties and recollect only the humiliations of growing up a stutterer. Denial is often both an act of courage and a self-destructive act. If it discouraged me from retreating into myself and totally surrendering to my stuttering-induced fears, it also encouraged me to pass up opportunities to learn better speech. For example, my speech therapists wanted me to practice my fluency-building exercises for half an hour every day. I would not do it. I could not get past the first exercise, slowly shaping and speaking the five vowel sounds -- a, e, i, o, and u -- without starting to cry. For to practice my speech was to acknowledge to myself that I had a speaking problem. Practicing undercut the positive self-image I was struggling to create. Therapy, as I experienced it in the 1940's and 1950's and as many stutterers experience it today, meant working towards fluent speech. What I needed -- and what most stutterers need -- was for attention to be paid to my feelings about my stuttering and to the way my speech affected my feelings towards myself.
The Book will take a critical but supportive look at the various programs of therapy for stutterers, but will suggest that a "cure" for stuttering, however tempting the idea, may -- like all quests for perfection -- be a trap to be avoided. Most therapy programs can help a person who stutters to become fluent without any difficulty -- as long as speaking situations are confined to the speech clinic. Transferring fluency into the public arena, and maintaining it for any length of time, is much more difficult. Some stutterers, by the constant practice of controlled speech, manage to etch patterns (or, to put it another way, rewire the neurological circuitry) that lessen -- or even eradicate -- disfluent speech. But it's not a perfect science, and therapy, as stutterers who have tried it know, rarely leads to a permanent cure. The experience of Charles Van Riper, the 85-year old dean of American speech pathologists, is typical. As he wrote in a letter to the self-help newsletter Letting Go,
During my career I have worked with thousands of stutterers, done a lot of research, and published several books and many articles on the subject. More importantly, I have stuttered myself all of those years and have tried almost every sort of therapy ranging from rhythmic controls and relaxation and slow speech and breathing exercises to psychoanalysis and hypnosis. All of these failed to help me attain any more than some temporary fluency followed by relapse. Nevertheless, I finally managed to become very fluent even though I continued to stutter.It's not uncommon for stutterers who do not achieve fluency in speech therapy to blame themselves for their failure. And the way therapy programs are structured, it's easy for speech therapists to reinforce this sense of failure, to insist that the program works (the patient, after all, was fluent while in the clinic) and that the cause of the failure is the patient's lack of motivation, dedication, perseverance, or ability to pursue the strict objectives of the therapy program. Relating my experience in various programs (and balancing my own relative failure with therapy against the experiences of friends who have done better), I will discuss why therapy works for some people and not for others.
I'll also discuss why many people who stutter, although taught the therapeutic tools for fluent speech, resist the "cure" by refusing to use the tools. Those who learn to function effectively with a handicap often gain a stake in maintaining it. Stutterers who have the grit to overcome their fear of speaking will often subconsciously deny that their disfluent speech is a problem that they need to overcome. They have created a powerful self-identity based on their triumph over silence and their stubborn refusal to let their stuttering get them down. To admit they need help is to undermine the basis of their confident self- image. A Life Bound Up In Words will explore the many ways, both positive and negative, that people with disabilities use denial and other psychological stratagems in order to get by.
The situational aspect of stuttering makes it seem like a psychological problem. If I stutter when confronted with authority then obviously if I overcome my fear of authority I will no longer stutter. That's the way many psychologists see the problem. To be sure, if I overcome my fear of authority my stress-level will probably go down and the brain-wave sequences that govern my speech would, perhaps, function in a more orderly fashion. But the brain is constantly monitoring and responding to stimuli -- of which fear of authority, though major, is only one. Moreover, the brain is a living organism. Each speaking experience, good and bad, weakens or strengthens neurological connections. Techniques for stress management and the self- understanding that comes from psychotherapy or psychoanalysis can help a stutterer become more fluent. But the predisposition to stutter is not so easily altered. There are psychologists and psychoanalysts who continue to offer long-term psychotherapy as an antidote to the stuttering disorder. Despite my criticism of those who believe that stuttering is a psychological problem, I will argue that psychology does have a complementary role to play in speech therapy; anyone who stutters and isn't made neurotic as a result is probably crazy!
My mother was the parent who took me to speech therapy and sat through my clinic sessions week after week and year after year. My father, who never saw me struggling inside the speech clinic, always felt that I was on the verge of outgrowing my stutter. In a sense I got my desperate optimism and proclivity for denial from him. Every time I got out a fluent sentence in his presence, he took it as evidence that my speech was improving. And every time I stuttered in his presence, which was most of the time, I felt further defeated for not living up to his hope and expectation. My father, a powerful figure within the family and among his clients (he was a lawyer), was not one to give in. Everytime he heard of a new therapist (which some client had told him was "the best in the field"), off I would go -- my father's hope in my mother's hand. As for me (oh stutterer of little faith), I just wanted to be with my friends playing ball. The fact that my father would promise that each new therapy program had a reputation for curing every other stuttering kid only reinforced the sense of being trapped in my own stuttering curse everytime I failed.
Speaking in school was always exhausting and anxiety- provoking, and many was the time I played sick rather than give an oral presentation. Reading aloud in class was also difficult and I would try to shrink into nothingness in order to avoid being called upon. But when the teacher went around the room and called upon everyone but me, I felt singled out and just as lousy. My parents and teachers tried many different approaches to ease my difficulty. I was, however, in a no-win speech situation. If I raised my hand to answer a question and stuttered when I got called on, I felt defeated and, despite having the answer, stupid. If I didn't raise my hand when I had the answer, I felt frustrated and just as stupid. Some of the people I will interview never spoke up in class, and, despite their obvious intelligence, were treated by their teachers as "dumb." I, on the other hand, usually got good grades and was popular in class. Except for the times when I had to speak, school was a positive and happy experience. Or is that my selective memory speaking? When I was shooting baskets or playing ringaleevio in the schoolyard, listening to my teachers talk about other places and other times, reading books about heroic adventurers, and taking tests, which I loved to do, I would forget that I stuttered, and I grabbed at those chances.
As I grew into maturity, I consciously modelled myself, first, after John Wayne, whose tough-guy silence seemed worth a thousand words; then, as a teenager, after Marlon Brando in "The Wild One" whose mumbled inarticulateness made my own reluctance to speak seem sexy and cool. These were identities carved out of desperation. More than anything, I wanted to be able to speak confidently, to flirt with girls, say the witty things that were always on the tip of my tongue, and show off everything I knew, for I had a lot to say. I learned how to make the most of my limited speaking skills. For example, if I kept to the background and commented on what other boys said, I could usually get out a few clever sentences without stuttering. But when I actually liked a girl, I always stuttered. And when I fell in love, my fluency failed me totally. On the other hand, love would ultimately compel me to overcome my speaking fears. It might take me weeks to muster the courage to ask a girl I liked out for a date; it might cause me sleepless nights and the mastery of complicated logistics to manipulate supposed chance meetings in order to avoid my having to use the phone. But I did what I had to do to get that date. This determined and persistent round-about-way of getting things done became a pattern of my life.
Like most boys, I wanted to be a star athlete when I grew up -- any sport would do. I could easily fantasize myself as a basketball star or as running a mile under four minutes like Roger Bannister, who, as the first to do it, was very much in the news. But I could never figure out how I'd get through postgame interviews. The more I thought about the requirements of being a sports hero, the more I saw my options dwindle. The first crack in my desperate optimism was an awareness that because of my speech I could not be a superhero. With my confidence breached, I began to feel more at the mercy of my fractured speech. I was a hotshot schoolyard basketball player, for instance; sometimes outscoring the other team with my deadly jump shot. Around my 13th year my basketball skills left me. Instead of shooting, even when I had an open shot, I would pass the ball off. For a while I persuaded myself that I was becoming a playmaker like ny New York Knick hero "Tricky Dick" Macguire. But my passes were forced; I had simply lost my confidence and was afraid to shoot. I was afraid that I would miss my shot just as I was afraid that I would stutter when I talked. Once playing baseball, I struck out in a game-winning situation in which a base hit would have made me a hero. Retiring to the bench with tears in my eyes, I thought, "if only I didn't stutter...."
I began to see myself as both George and Lenny, the two main characters in John Steinbeck's novel Of Mice and Men. Like the character George, I felt capable and confident. I sensed, when feeling good about myself, that I even possessed a certain quiet and stolid charisma. My peers looked up to me. I was a natural leader, not a follower. But all this collapsed whenever I stuttered or when I wanted to speak but chose to be silent. At that point I would feel myself instantly transformed into Steinbeck's pitiful character Lenny, an oafish and uncoordinated, slow and witless retard. Oh how I fought to keep Lenny suppressed. I stifled and squelched him, struggled, with all the power I could muster, to keep him from showing himself in public. In private, though, I learned to grudgingly love him. With Lenny, I could wallow in self-pity and use him as an excuse for everything I felt that I did that was wrong.
There was something bittersweet about becoming pitiful Lenny. And there was something wonderfully triumphant about remaking myself into proficient George. In my interviews with other stutterers, I will ask how they manage to maintain their self-confidence. My way has always been to listen to jazz, especially the blues. Unwilling to confront my own troubles, I immersed myself, however tangentially, in the pain of black Americans. I'd listen to Joe Williams shouting the blues over the Count Basie band. Joe Williams might sing of having "bad luck and trouble," but the power of the music and his own absolute refusal to feel sorry for himself lifted me out of the doldrums of my self-pity. The feeling of soaring, of emotional transcendence, is a powerful rush. I began to like being Lenny so I could put on my jazz records and instantly and triumphantly become transmuted into George. And so a pattern took shape: I needed to feel myself as Lenny so that I could remake myself as George.
My stuttering and the ways that my parents and I dealt with it didn't happen in a social vacuum. My father grew up in the Jewish ghetto of the Lower East Side and was educated in New York's public schools. He wanted better for me. I should apply to Harvard, he said. Knowing my limitations, I refused even to imagine the possibility of becoming a Harvard man. In addition to my marks, which were not up to Harvard's grade, I knew I couldn't handle a Harvard interview and saw no reason why I should want to try. My father, who I surmised wanted to be able to boast to his clients that I interviewed at Harvard, called me "negative," and implied that I was a quitter. We fought about that, as we fought about everything else. I never once talked to him about my stuttering and how inadequate it made me feel. Nor did I talk to my mother about how I felt about going to therapy and not making any progress. And I never discussed these feelings with friends or to the girl I went steady with in high school for almost two years. Most amazingly, I never talked about stuttering to my speech therapist. One professor in college, a man who had lost an arm in the war, took an interest in me and tried to draw me out. I rebuffed his overture, conscious of his motive, outraged that he would equate his handicap with mine and shamed that he had recognized my need. Occasionally I would realize that I was destroying myself with pride. But in retrospect, I see that I was also a victim of the times. Yes, I needed help; but, this being the 1950's -- the "silent fifties" in the personal as well as the political sense - - I lacked a conceptual framework and a descriptive language to seek it out.
My father wanted, indeed expected, that I'd become a lawyer like him, or better, a doctor like my uncle, his older brother, whom my father considered the expert on all personal matters, including my speech about which, as a cardiologist, he knew nothing. I felt that, because of my speech, I was unfit to pursue those careers (and felt, also, that my becoming anything below a doctor or lawyer in status would disappoint him and prove, once again, my own personal failure). As graduation from college neared, my optimism became hollow. I was becoming desperate; I was at a loss to know what I should do, what I could be, and how I would fit in in the adult world. I turned down history honors in college because the seminars required oral presentations. My excuse to the history faculty was that I wasn't interested in the subject; no one challenged my lie. Neither speech therapy nor psychoanalysis, which I did at different times throughout college and graduate school, addressed the very real and pressing practical problem of what I might do with my life. In therapy, the goal was fluent speech. In analysis, I was supposedly trying to uncover the psychological roots of my stuttering.
My father had rebelled against his orthodox Jewish past and, in a similar manner, I rebelled against the upper middle-class aspirations of my father. In high school, I read Jack Kerouac's On the Road and declared my intention to become a beatnik when I grew up. I began hanging around in Greenwich Village desperate to become part of that scene but too frightened of speaking to ever talk to anyone. In the eyes of my family, my rebelliousness was a symptom of my stutter. At least that's how I interpreted their dim view of my bohemian conceit. Prideful as I was, I felt that I could not become a bohemian until I proved to them, and to myself, that I could succeed in their successful career-oriented world.
I always wanted to be a writer. Writing is an obvious compensation for a person who stutters. If I couldn't communicate by talking, I would do so by writing. (But it's also a personal solution. The percentage of stutterers who write is probably no different from the percentage of fluent talkers who write.) I was always good at writing, but my talent was for non- fiction. Having created a strong sense of my self, I could not imagine myself in anybody else's life, living a fictitious character's story. (In this same way, I've always found it hard to imagine myself as a fluent person. I've always felt myself as Marty Jezer, the stutterer). I was shocked when I realized that writers had to talk to people in order to have something about which to write. And I felt that I could not interview people, especially strangers on the phone. An alternative, or so I thought, was to seek a job in advertising. I went bravely through the motions, circling the want ads in the New York Times, presenting myself and my resume at employment agencies that specialized in advertising careers. I stuttered my way through one job interview after another, hardened to the final handshake and the dismissive, "don't call us, we'll call you." I must have been in an existential stupor because I kept on going. Finally, one personnel director told me the truth; yes, I had the talent to become a good copywriter; but in advertising image is everything and the men who hire for advertising agencies would never give me a job. Until I conquered my stuttering, he said, I was wasting my time.
In a way I was relieved to hear said what I thought I knew. But the decisiveness of the rejection made me even more determined to make it in the world that didn't want me: not only to show my father, but to defy those fuckers in advertising as well. I got a friend to do my telephoning to set up interviews. The fact that he was English and spoke with a pronounced accent didn't phase me; at least he didn't stutter. On another level, I probably found the whole situation so hopeless that I secretly reveled in the absurdity of the deception. That it worked only lowered my opinion of the world I was so desperate to enter. Groucho Marx once said, "I wouldn't want to join a club that would have me as a member." My version went, "I wouldn't want to work at a firm that would hire me as an employee."
The job I finally got was writing advertisements for a department store. In terms of status, this was the bottom rung of the advertising world. But I had to wear a jacket and tie and take the subway to work. I was ecstatic in my normalcy. I even got married during this time, essentially for the same reason that I wanted a job in advertising. My wedding band, which I wore proudly, didn't symbolize married love as much as it represented my standing in the world. A woman would have me.
After a few years I quit this job to become an editor of an encyclopedia. I loved this job, and if I were sensible and realistic, I would have dug myself in and made job security my priority. But I remained true to my real ambition. My desire to live a bohemian life was based on a real conviction. I wanted to make my mark as a writer and, like so many young people in my generation, fulfill the role of a responsible citizen. Because of my love of jazz and my identification with the African- American experience, I became active in the civil rights movement. The Vietnam War was heating up. I read everything I could about it and I felt I had to oppose it. Opposition was building, not in the Congress, but in the streets. In 1965, when I became active, the number of protestors was so small that anyone with wit, intelligence, and a will to do hard work was welcome in the anti-war movement's inner circle. I helped start and edit an influential anti-war publication, Win Magazine, and worked closely with protest leaders like Abbie Hoffman and Dave Dellinger, sending them memos because I could not talk. I was new to the movement and had original ideas. Despite my stutter, they took me seriously.
For the past thirty years I have lived close to the cutting edge of social and cultural change in America. My father's son, I pursued success: if not along the road to affluent suburbia, then certainly on the path of downwardly mobile, countercultural bohemia. As an activist beginning in the 1960s, in the civil rights and antiwar movements, as a founder of one of the best known communal experiments in the country ("Total Loss Farm"), and, currently, as a political consultant on the issue of campaign finance reform, I am consistently putting myself forward, taking risks for the ideas and causes I believe in. But the risk for me has always been verbal rather than physical. I was never too frightened of being clubbed and tear gassed (as I was) during anti-war demonstrations in New York, Washington, and Chicago or of going to jail for civil disobedience demonstrations. I was terrified, however, of having to give an arresting officer my name or having to testify in court. My apprehension was both personal and political. The inability to speak my name without blocking on both Marty and Jezer shamed me. But I also feared that as a stutterer I was fostering a lousy image of all civil rights or peace activists.
When the first wave of feminism hit my activist circles in the late 1960's, I was in an interesting position. As one who was scared of speaking in public, I was able to elude the charge of being one of those arrogant men who dominated meetings with self-important speech-making. I also felt the anger and frustration that many women reported experiencing in feeling pressure from men to keep silent. My disfluent speech put me in a very special place in which my own limitations helped me to understand the frustrations and yearnings of others.
In my discussion of my political activism, I will focus on the challenge of being a stutterer in a situation that demanded skills in effective communication. The issue here is not radical politics but the challenge of becoming a public person. In that regard, I will compare my experience with those of other stutterers who have taken on a public role and had to confront their fear of stuttering in public. But I won't ignore the political dimension of this topic. The idea of empowerment evolved out of the 1960's movements for civil rights and women's liberation, was taken up by gay liberationists, and eventually by people with disabilities, powerfully affecting the way those of us with handicaps see ourselves.
In the 1970's and in the early 1980's, I once again tried speech therapy. The Precision Fluency Program at Hollins College and Dr. Martin Schwartz's airflow program were known as offering the best hope for adults who stutter. I did the Hollins program twice; the second time for free because even after the first three-week session I hadn't mastered the fluent speaking techniques within the clinic. I worked in the Schwartz program for over three years, practicing my speech technique an hour a day, making hundreds of phone calls to telephone operators in order to desensitize myself to using the telephone, exchanging tapes with "tape pals," and going to the self-help practice groups that Schwartz encouraged his clients to establish. My speech improved but I was still stuttering. Stutterers in therapy need a sense of accomplishment to keep going. The stutterer who goes from blocking on 30% of his or her words to blocking on just 10% feels real progress and is motivated to continue practicing. Statistically, I made the same progress. After three years of practice, and by diligently monitoring every sound I made, I was stuttering on 50% of my words as opposed to my previous 80%, and the effort to speak fluently detracted from the spontaneous creativity of my stuttered speech. And I was still stuttering.
In desperation, I sent away for the Edinburgh Masker, a portable gizmo that looks like a hearing aid and emits a white noise or masking sound that drowns out the sound of my voice every time I start speaking. Friends of mine had seen it work on such television programs as "That's Incredible," which made me wary. Moreover, every speech therapist I had ever met had denounced it as a "crutch" that would not help a stutterer gain complete fluency. I unthinkingly accepted their critique; it never occurred to me that people who can't walk benefit with a crutch, just as people with hearing disabilities benefit with a hearing aid. Why, then, should a person who stutters be denied the benefit of a verbal crutch? One day, at a fish store, I asked the clerk for wa-wa-wa--one pound of f-f-filet of s--s- sole. The clerks eyes lit up. "You stutter," he said. "You should get an Edinburgh Masker. I'm wearing one now and I hardly ever stutter." He told me how to order it and I went home and did. The Masker doesn't make me perfectly fluent (as it does, apparently, for some who use it), but it does lessen the number and tenseness of my stuttering blocks. I feel I can live with the P-p-porky P-p-pig like repetitions of my speech because my ability to communicate isn't totally obstructed. Despite the repetition of sounds, my words are moving forward. And because I can't hear myself stutter, I sometimes forget that I stutter. Increasingly, I'm noticing that I no longer evaluate verbal encounters in terms of my relative fluency. I feel as if I'm going through a slow and (when I think about it) startling conversion from a person who stutters to a regular speaker who delights in good conversation. Giving up one's fears is occasionally frightening and often exhilarating. The feeling is, I imagine, like a religious experience. In discovering the natural innocence of speech, I've become a born-again speaker. Over the past ten years, I've became active in the self-help network for people who stutter. It evolved during the 1970s out of the self-help groups that were part of Dr. Schwartz's therapy program. Schwartz understood that stutterers who go through a therapy program need the support of other stutterers to help them transfer their clinic-learned fluency techniques to real world situations. He saw self-help as a means of encouraging his clients to stick to the program. But his clients, in talking to one another, began to challenge aspects of the program and, over Schwartz's objections, opened their group to all people who stuttered. They began to hold conferences and the idea spread across the country.
I found my first self-help conferences intimidating. It was the first time I had ever interacted with a group of people who openly stuttered and I found myself comparing my disfluency to the fluency of all the others. I found it depressing that so many people who called themselves stutterers seemed to be acceptably fluent by my standard of stuttering. But gradually I got the nerve to speak up at these conventions and was astonished to find that some of the people I envied for their fluency envied me for my willingness to stutter in public. Soon I was selected as a speaker on workshop panels and then helped start and edit a self-help newsletter.
The evolution of an assertive self-help movement among stutterers is similar to what is happening among other people with disabilities. Clients, including the deaf and disabled, are rising up to tell, out of their own experience, what they want out of therapy and how they want to fit into everyday life. While focusing on self-help for stutterers, the book will discuss the various models and philosophies of self-help. (There are always people trying to foist the twelve-step model on self-help meetings of stutterers. While it obviously helps people with addictive problems, it is irrelevant for people who stutter. Indeed, when self-help becomes too assertive and leads one to expect that there is a realizable personal solution to all of life's problems, it changes from a positive supporting mechanism to another false path in the quest for perfection.) A Life Bound Up In Words will encourage people who stutter or have other disabilities to acknowledge their handicap, face up to their limitations, harness their strengths, learn about and utilize opportunities for self-improvement (through professional therapy and self-help groups), and get on with life.
Over the years, the self-help movement has changed direction. At first most members saw self-help as a means of helping them improve their fluency. But in comparing personal experiences, we began to realize that even the best therapy programs promise more than they deliver. And we began to question why it was that therapy programs often led to feelings of failure on the part of the clients. Best of all, we learned that there is no shame in being a stutterer, and that even people who stutter lead self-fulfilling lives and become effective communicators.
In recent years, the stutterers' self-help movement has challenged the traditional approach to stuttering and speech therapy, insisting that the goal of fluency, however desirable, should not be primary. Instead, therapy should help people who stutter accept the fact of their stutter and treat not just their faulty speaking mechanisms but their whole person. It's better to speak and to stutter than to be silent and therefore never stutter. Issues of self-acceptance and self-esteem are as important to individuals who stutter as speaking techniques that enhance fluency and limit the instances of stuttering.
I waited until I was 42 to father a child, fearful that a child of mine would inherit my genetic disposition to stutter and apprehensive about my ability to perform all those parenting acts in which fluent speech seems a requirement. My verbally precocious daughter is now 11. One of the most gratifying achievements of my life was her selection of me, before she learned to read on her own, as her designated bedtime reader. Of course I was dependent upon my Masker to get through Dr. Seuss without stuttering. But so what! When Katie was younger she would often explain to her friends, "My daddy has a handicap when he speaks." And so I do.
I'm writing this book for a much broader audience than the immediate stuttering community. A Life Bound Up In Words will place the experience of stuttering in a broader social context. However unique stuttering is as a disability, the daily embarrassments and deeper psychic indignities that stutterers have to confront and overcome are similar to the problems many non-stutterers experience. Feelings of shame and personal inadequacy, if not universal in our society, are certainly commonplace. The challenge of confronting these feelings -- the defeats of giving in to them and the triumphs of overcoming them -- is, for many people, the drama of life.