Chicago Tribune
SECTIONS: News | ChicagoSports.com | Business | Tech | Leisure | Health|Family | Travel | Classified | Community
SITE TOOLS: Search archives | Recommended plug-ins
CLASSIFIED: Homes | CareerPath | Cars.com | Merchandise
ADVERTISING: Internet Edition | Print Edition | Other Products | Creative Specs
SERVICES: Customer Service | E-mail the staff | About the print edition


Copyright and terms of service | Privacy policy

This article was published on the Chicago Tribune Website (http://chicagotribune.com) on September 24, 2000
All rights reserved

FINDING THE WORDS
HOW SOME STUTTERERS ARE TALKING THEIR WAY OUT OF ISOLATION


September 24, 2000

There's a storm front moving on Comiskey Park. It's a balmy Friday night, the very essence of a low-key summer evening, but as dark clouds mass in the sky above the ballfield, the easy pace of things grows edgy and sharp. All around me, fans lean forward as the rain starts falling in liquid needles; "Come on, Jim," they call in ragged unison, exhorting pitcher Jim Parque to finish out the game. With the White Sox leading the Yankees 2-0 in the top of the fifth inning, all Parque needs are three more outs to make the game official, and he's working fast, efficiently, as if in response to the shouting from the seats. This is one of the great joys of baseball, the way that our shared affection for a team or a player somehow draws us closer together, making us part of something larger than ourselves.

Unless, of course, you're rooting for the other team. As one of the few Yankee fans scattered throughout the stadium, I feel a subtle distance from the crowd around me, invisible but unbridgeable. As Parque retires the Yankee batters, and the rain slowly builds into a torrent, I turn to the man next to me, a middle-aged engineer named Ed, and jokingly tell him, "I've never felt so alone." For much of the game, Ed has been giving me good-natured grief about my loyalties, but now he grows serious and flashes a rueful smile.

"Everybody here," he says, waving his arm to indicate the 50 or so people seated with us, "understands that. Everybody here knows exactly how that feels."

I am watching the game with members of the National Stuttering Association, an advocacy and self-help group for people who stutter, which is holding its annual convention in Chicago. Featuring two full days of panels, workshops, discussions and informal get-togethers, the NSA convention is an immersion in the world of stuttering. An all-inclusive education for the outsider, it provides stutterers a safe haven and a sense of affirmation to carry with them throughout the year. Of the organization's 3,000 members, nearly 600 have come to the Holiday Inn O'Hare International, where the conversation ranges from the latest neurological studies to strategies for daily living, and it is the fluent speaker, not the stutterer, who stands out. Our Comiskey Park outing is one of several NSA-sponsored field trips meant to get people talking, not only about their stuttering but also about their lives.

As for why this is necessary, just consider your own reaction to the idea of a convention of stutterers, the little barbs and jokes that rise unbidden in your mind. Stuttering is one of the last remaining refuges of political incorrectness. We make fun of the disorder almost unconsciously, laughing at such caricatures as Porky Pig and Ken, the stuttering jewel thief played by Michael Palin in the film "A Fish Called Wanda," both of which have sparked protests by the NSA. Ken may be a sympathetic figure, acknowledges longtime NSA member Elizabeth Kapstein, but "each time he stuttered, the crowd began to laugh, and it felt like growing up all over again. . . . Some things are still acceptable to make fun of, and stuttering is one."

The mask

More than 3 million Americans, or slightly more than 1 percent of the population, suffer from the disorder, but it's not uncommon for a non-stutterer never to meet one--or to know they've met one. Many stutterers go out of their way to "pass" as fluent, using a variety of masking strategies. Some speak as little as they can get away with, while others plan their conversation several sentences in advance, scanning ahead for sounds that give them trouble, then substituting different words. One woman used to have her husband order for her in restaurants, going to the bathroom whenever she saw a waiter coming so she wouldn't appear incapable of ordering herself.

Therapy can help, but it has its limitations, especially if fluency is the therapists' goal. As recently as 25 years ago, recalls Michael Sugarman, an Oakland, Calif., social worker who co-founded the NSA in 1977, speech pathologists regularly "timed out" their clients, stopping them from speaking each time they were not fluent. The NSA, in fact, evolved from an incident in which Sugarman, during a dinner out, got fed up with his therapist for marking down his stutters and, with several other clients, moved to a table of his own. But even that therapy for stuttering was a lot better than the way things used to be: Throughout the 18th Century, flogging was a common remedy; in the 1840s, surgeons treated stuttering by severing the nerves at the base of the tongue. This kind of ignorance lingers even today. One speech therapist told me about a client who, as a child in the rural South, was beaten every time she stuttered because her mother believed she was possessed.

Part of the problem in treating stuttering is that no one really knows the cause. It arises from an elusive combination of physical and psychological factors and manifests itself in a seemingly endless array of patterns--as many, it has been suggested, as there are stutterers. Although for many years stuttering was seen as a sign of emotional weakness or instability, the current understanding is that it's physiological, a breakdown in the brain's ability to coordinate speech. In many cases it appears to be hereditary, and it affects men more than women, at a ratio of about 3-1. Beyond that, researchers are at a loss to explain it. Many children go through a stuttering phase early in speech development, and between 70 and 75 percent of them outgrow the condition. Yet what distinguishes them from long-term stutterers remains unknown.

Also clouding the issue is the tendency of stutterers to construct layer upon layer of coping mechanisms, which may start out as ways to circumvent a stutter but ultimately create more difficulties. Most of the unnatural gestures we associate with stuttering--the twitches and tics, the rolling eyes and stamping feet--aren't really functions of the disorder, but secondary symptoms that stem from early attempts to literally force the language out. All of this is a response to the tension of being unable to speak fluently; the more stressful a circumstance, the more trouble one is likely to have. Virtually all people who stutter know someone they just can't talk to because that person makes them nervous. And virtually all block, or stumble, on words with powerful associations--words like "stutter," for instance, or the peaks and valleys of their own names.

For all its commonality, the stuttering community is as varied as any society--young, old, straight, gay--people whose disorder is so mild you barely notice it and others, such as Vicki Schutter, an effervescent Texan, with a stutter so severe it literally takes her a minute or more to ask my name. Standing there, maintaining eye contact while I wait for her to finish, I wonder how it is for her to function in the world. But tonight she seems relaxed, comfortable, having a drink and laughing. She asks friends to pass on the latest gossip, and talks about the people she has seen. It is a resolutely normal moment in which, if you can see past the stutter, you find the essential human impulse for interaction, the same desires and fears that anyone feels in a social setting.

The wall between stutterers and the rest of the world is built not only by childhood mocking and insults, but also by silence, the reluctance of nearly everyone--stutterers, their families, even therapists--to talk about it. As speech pathologist Lee Caggiano says, "We're taught to sit still and not interrupt when someone is stuttering, and never to discuss it," as if drawing attention to the disorder would only make the stutterer feel worse. If you ask around, though, you quickly realize that what's true is just the opposite, that most stutterers want nothing more than to talk about it, if only to defuse the self-consciousness and shame they deal with every time they hit a block.

"When I'm in a severe block," explains Lee Reeves, chairman of the NSA's board of directors, "it feels like the whole world stops, like everything is focused on my mouth. I feel very helpless, yet there's a tremendous amount of pressure, and my mind is racing. It's like being called on in class, and everyone is looking at you, and you're stuck. And there's this big clock on the wall, and it's going tick, tick, tick, and all I can hear is that."

The situation is only worsened by the stutterer's sense of isolation, of going through this all alone. Many children who stutter refuse to accept that there are other people like them, and even older stutterers, Caggiano points out, often lack the necessary language for connection, conditioned to believe that "stuttering must be so horrible we can't talk about it, since we talk about everything but this."

This sense of isolation is what gives the NSA convention its focus, making it a place not only where stuttering becomes part of the conversation, but also where people who stutter can create their own community of words. Everywhere are slogans, statements and dialectics, from T-shirts ("I Stutter," one declares, "What Are You Good At?") to the jokes people offer, as at any convention, often at their own expense.

At the closing-night gala, a postal worker named George Laday tells me about a hearing-impaired man who tried to buy stamps from him; as Laday stood blocking, mouth moving but silent, the man slammed down his hearing aid and grumbled, "Three hundred dollars, and the damn thing doesn't work." Later, after NSA Executive Director Annie Bradberry declares, "It's hard to put into words what has happened here," someone in the audience laughs, "It's hard for us to put anything into words."

Freedom of speech

These lighthearted moments serve a serious purpose, allowing stutterers to alter their relationship with the disorder merely by speaking about it, engaging with it, bringing it into the light of everyday discourse. It's a useful skill to have, especially after they leave here and must deal with the indifference and sometimes hostility of the outside world. Nowhere is this more vividly demonstrated than in storytelling, which stands at the heart of NSA's philosophy. There's a certain logic to that, since who's more ready to tell stories than people who have been shut up all their lives? As Marty Jezer notes in his 1997 book "Stuttering: A Life Bound Up in Words," "The speech that was in me was never dormant. It was always wanting to get out."

Jezer, a 60-year-old activist and writer from Brattleboro, Vt., and a severe stutterer, considers stories a form of liberation, a way of facing his fears by revealing them. Even as it makes him vulnerable, it opens up the world. Jezer came slowly to this realization: As a civil rights and anti-war demonstrator in the 1960s, he "was never afraid of taking part in sit-ins. . . . My great dread was having to give my name to the arresting officer and later stand up in court and make my plea." But language still attracted him, and that eventually led him to the NSA.

"Like a lot of NSA stalwarts," he elaborates in an e-mail, "I entered the self-help world kicking and screaming. I was afraid it would be made up of losers and whiners. I write in my book about a guy who gives a speech and stutters on every word. `This is crazy,' I thought. `If I were him, I'd end the speech as fast as I can and get off the stage.' After, people applauded him and hugged him. I took this memory home and had an insight that what they were affirming was his courage, something I didn't then have. He was not ashamed of his stuttering. I was.

"I finally realized it was OK to stutter. Once I got that realization, my speaking improved. I still stuttered like hell, but people saw I was confident and enjoying myself and cued off that.".

The convention features a variety of storytelling, from formal speeches--former Bulls star Bob Love recounted the agony of blocking at a father-son sports dinner--to open-mike sessions, where anyone can get up and talk for a few minutes to have the experience of speaking before a crowd. At a workshop, speech pathologist Judith Kuster passes around printouts from her Web site, www.stutteringhomepage.com, which contains information on where to get help, clinical data, discussion forums and a list of famous stutterers (including Bruce Willis, Winston Churchill, Marilyn Monroe, Thomas Jefferson and even, purportedly, Moses and Aristotle). What's notable about Kuster's site and her workshop is how simple some of the stories are. One consists of just six words: "I hate it. Sometimes I cry." Yet within that koan-like phrasing, the stutterer's struggle comes vividly to life.

As Kuster goes around the room, asking participants to read from other people's postings, a subtle transference occurs. "When I talk, they say, `S-s-s-shut up,' " reads one woman, and even though it isn't her narrative, she stumbles all the same. This is partly because of the pattern of her own stutter, but there seems to be more to it, that sharing stories breaks through the stutterer's isolation, allowing communication to be reclaimed.

`It's OK to stutter'

The storytelling and other convention activities are intended to help stutterers see themselves not as damaged but different, a purpose that goes all the way back to the NSA's roots in the civil- and disability-rights movements. "That's all we initially wanted," recalls Sugarman. "The notion that it's OK to stutter was basically an anthem for us in the early years." More than two decades later, that idea not only has altered the way stutterers think about their condition, but it has changed the goal of therapy as well.

"There has been a coming together with the speech pathologists," says Jezer. "Instead of a cure (or total fluency), we long for enough fluency to communicate effectively. The best therapists no longer promise a `cure' --though some still do, falsely. What they promise are the skills to manage one's stuttering effectively so we can get on with our lives."

To encourage this, Sugarman has spent the last three years promoting International Stuttering Awareness Day on Oct. 22, together with an on-line conference on the Stuttering Home Page. But even though, as Jezer says, "the public's attitude is better (and) our stuttering, which used to make us fearful, now gives us strength," there's no simple accommodation with society at large.

Even within the NSA, there are subcultures that have complicated relationships with each other. A group called Passing Twice, for instance--the name refers to the fact that a gay stutterer must either pass or come out two times, as a homosexual and as a person who stutters--is officially recognized, but exists along the organization's edges, like an outpost even of this outpost world. "There are still a lot of people who don't come out because they're scared," says Elizabeth Kapstein, a co-founder of the group. "The folks who come to an NSA convention have to change not just how they think, but how they live their lives. That's difficult enough with stuttering, but when you bring in sexuality, it complicates their whole idea of who they are." Surprisingly, she says, "It's easier to come out sexually than as a stutterer. You have events to attend, and friends, and places to go. It's about love, and stuttering doesn't do that for me."

Listening to Kapstein, I am struck by the complexity of these emotions, especially from someone who appears to have made her peace with stuttering. I'm also reminded of a comment by Marty Jezer. "We need to embrace the contradiction: I stutter, and I accept myself as I am, and feel no shame or fear. But I would also like to be fluent." So every day, through all the odd geometries of human interaction, stuttering remains, like a specter, on the fringe of language. No matter how one addresses it, it refuses to dissipate.

`Advertising' agents

I get a small sense of this on the final afternoon of the convention, when I attend a seminar on "advertising," run by Caggiano's son Michael, a stutterer, and Peter Reitzes, a 27-year-old stutterer and speech-pathology graduate student at New York University. Advertising is a confrontation strategy, in which a person who stutters is forced to face not only his or her own worst fears, but the judgment of the world. It's a simple process: A therapist takes a group of stutterers, usually teenagers, out into a public setting, and has them approach random strangers with a questionnaire. The questions themselves are fairly basic--"What do you think causes stuttering? Do you feel uncomfortable or embarrassed when you talk to a stutterer?"--but the act of asking is a profound challenge to the stutterer's sensitivity about the disorder, the anxiety over rejection by people you don't know.

"So much of how you see yourself," says Reitzes, "has to do with what other people think. And by advertising, you get to see their reactions, and realize that even if the worst thing happens, and they walk away from you, it's nothing to be ashamed about."

Although advertising is usually part of an intensive therapy process, there is value, Reitzes believes, in even a quick exercise. So, no sooner does the seminar room fill with teens and parents than he and Caggiano break the participants into groups of four or five and shepherd them outside to Des Plaines River Road in Rosemont. It's not ideal advertising territory. Just off the O'Hare Expressway, occupied primarily by chain hotels and convention centers, it offers only sporadic foot traffic, and most of the people we encounter are not inclined to talk.

Undaunted, Reitzes leads us forward, stopping the first person he sees to do his own interview. Then he turns the initiative over to Kim, a teenager who scans the sidewalk for "a really cute guy." Elaine, one of the milder stutterers, approaches a pedestrian, only to watch him walk away in the middle of the survey. "He didn't even see me," she says, bursting into tears as Reitzes tries to console her. "It's like he didn't notice I was there."

Advertising is supposed to teach stutterers that, even in the face of rejection, they must find a way to keep on. This is just what Elaine does, jumping back in with someone else and completing the interview. It's a courageous move, and as I'm thinking that I'd never have the guts to do it, Reitzes asks if I would like to have a go. "But I don't stutter," I almost say, then think better of it. Were I willing, after all, I could try "voluntary stuttering," a technique used by stutterers to ease their tension, and by fluent speakers looking for a taste of what it's like. Finally, I mumble something about journalistic objectivity, and not wanting to compromise my work. The group seems to accept this, but it's a lie, a cover for my own fear and insecurity.

Embarrassed now, I hang back a bit and watch as Danny, a severe stutterer, takes his turn. Blushing, the cords of his neck rigid, he fights to frame the simplest syllables, but mostly emits no more than a sibilant hiss. After two or three people walk past him, unaware that he's trying to speak, Reitzes stops a pedestrian and introduces him to the boy. What happens next is a remarkable balancing act of bravery and empathy, as Danny somehow struggles through every question, while the middle-aged man to whom he is speaking never breaks away. When the interview is finished, the two shake hands, and the group crowds around Danny, hugging him and patting his back.

Like the moment in Comiskey Park, it is both a unifying event and one in which I stand apart. Even if I had summoned the courage to join the advertising exercise, stuttering would be a choice, something I could stop when I wanted. For the others in the group, there is no such choice, no matter how they may present themselves. But it was also a lesson in commonalities, the insights stuttering offers into how we live our lives. Most of us, at times, feel alone or damaged or ashamed, that we are less than we might be, that the world has marked our every failing, that other people are keeping score. Each time stutterers advertise, or reaffirm their claim to self-expression, they are speaking for everyone. They are talking about our right to be flawed, our right to be imperfect, our right to be human to the core.

"That's exactly why we do this," Reitzes says after the advertising session. "Because of what we have to deal with every day."

E-mail this story to a friend
More articles on the Tribune Magazine home page