Kenny Koroll, the chairman of the board at the National Stuttering Association (NSA), has a favorite phrase: “We are the cure.”
He says it during the closing ceremony of this year’s NSA conference, to a room full of people who stutter, their families, and speech-language pathologists. “If you’re here to be yourself, to let your guard down, to stutter all you want, we got the cure for that,” he tells them. “We are the cure.”
He doesn’t mean, in the literal sense, that people can cure their own stuttering—in fact, there is no cure for stuttering, which can be managed but not eliminated entirely. The communication disorder is believed to have a neurological basis, and it’s been shown to run in families, but it otherwise remains largely mysterious.
That doesn’t stop many people who stutter from looking for something that would take the repetitions, tension-filled pauses, and other “disfluencies” out of their speech. There are a host of stuttering therapies, clinical drug trials, and even electronic devices and apps that attract stutterers in search of a cure.
But while the goal of most therapeutic approaches is increased rates of fluency, almost all the conference attendees I spoke with were adamant that speech without stuttering is not their goal. For some, “fluency” is a bad word. A “cure”—as Koroll means it, and as they understand it—is about learning to live comfortably with a stutter. Many conference attendees tell me that change in their life came when they stopped fighting against their disfluencies.
“There’s always that question,” Koroll tells me. “If you had a magic pill, would you take it? And for me, the answer is no.”
The NSA, which started as a tiny cohort in San Francisco in 1977 as the National Stuttering Project (the name changed in 2000), holds a conference every year. It’s a flurry of research presentations; self-esteem workshops; open mics, where people who stutter take the stage to share stories and insights; and social events.
The organization also has more than 100 chapters across the United States that meet once or twice a month. The leaders must use specific words to open and close the meetings, but otherwise, they’re largely freeform. Anyone who stutters, or who has an interest in stuttering (speech-language pathology students often attend), is welcome. The organization has roughly 20,000 names on their mailing list, and about 700 to 900 people have attended their annual conference in recent years.
It’s a small number, though, compared to the number of stutterers in the country: Approximately 1 percent of the population stutters, or around 3 million Americans. Lee Reeves, the former chairman of the NSA, says it’s a question he has heard often: “Where are all the stutterers?”
Koroll and Reeves both believe that stigma is one reason why many people are hesitant to join an organized community of stutterers. “It’s not something they’re proud of or want to be associated with,” Reeves says. Many people I talked with told me they knew someone else who stuttered growing up, yet studiously avoided the subject of their shared trait whenever they spoke.
In contrast to this tendency in stutterers to avoid the topic, organizations like the NSA base their missions on a simple idea: Witnessing each other’s speech and then talking about it openly can have a powerful emotional effect.
“I think I only said my name at my first NSA chapter meeting, right at the beginning,” Michael Turner, a filmmaker based in Portland who attended his first NSA conference last year, told me. “And I heard everyone else say their names too, and everyone stuttered on them, and I left floating in a cloud.”
And as the NSA—which calls itself “the world’s largest self-help group for people who stutter”— gains prominence within the field of speech-language pathology, some people want to carry this idea of acceptance to its logical conclusion: a future where stuttering is no longer a pathology at all, just another way of speaking.
Most stutterers are familiar with the experience of being told to slow down, to breathe, to try this or that trick—meditation, speaking in a singsong voice, reciting poetry à la James Earl Jones or Joe Biden (both stutterers).
About 65–75 percent of children who develop a stutter see it disappear within a couple years. Some of them grow out of it on their own, and others benefit from early-intervention speech therapy. But after adolescence, a stutter will likely stick around for life. Some people who stutter can erase stuttering from their speech almost entirely, but the disappearance of visible disfluencies does not mean that they are cured—it just means they have to consistently work to keep the stutter under wraps.
“Covert stutterers” often rely on a set of avoidant behaviors to keep their stuttering hidden from view. (In fact, these behaviors were added to the entry for Childhood-Onset Fluency Disorder in the DSM-5.) Because stutterers can typically sense when they are about to get “stuck” on a word, they have the option—particularly if their stuttering is on the mild side—of swapping one word out for another. People who stutter may also avoid stressful situations, use “filler words” like “um” or “like” to ease themselves into a difficult sound, or rely on a series of tricks that keep the stuttering at bay. Surreptitiously tapping one’s fingers, swallowing before speaking, and even speaking with an accent, for example, can produce temporary fluency.
But these tools address the motor process of speaking, not what’s happening in the brain, explains Luc De Nil, a speech-language pathologist at the University of Toronto. There is “strong evidence that a disruption of normal brain processes involved in planning and executing speech are a central cause of stuttering,” he says—and because these tricks do not address the core of the problem, they tend to wear off over time.
To some covert stutterers who rely on these methods, any slip in the façade can feel like a catastrophe. Peter Reitzes, a speech pathologist in Chapel Hill, North Carolina, who developed a stutter around the first grade, began hiding his disorder at the age of 10. He managed to conceal it for more than a decade; throughout his teenage years, his family thought he had grown out of it. “I think there were literally two people who caught onto the fact that I stuttered between the ages of 10 and 21,” he says.
He avoided certain stressful situations that might trigger his stutter, quitting the baseball team and rarely raising his hand in class, and developed a knack for last-minute linguistic shuffling when he felt a word would give him trouble.
But after Reitzes graduated from college, the stuttering stopped responding to his old tricks. The disorder may fluctuate over the course of weeks, months, or years, and he was experiencing a significant uptick. Stuttering openly for the first time in a decade—with close friends, family, and strangers—was terrifying.
Growing up, Reitzes had never really known anyone else who spoke like him. But shortly after his disfluencies started resurfacing, he began seeing a speech therapist, Phil Schneider, who tried to help Reitzes accept his stutter rather than work on hiding it. Around the same time, Schneider introduced him to a tight-knit stuttering community in New York City.
“I was very reluctant to meet other people who stuttered,” he admits. “Phil literally came to my Manhattan apartment and drove me to my first meeting … That day changed my life.”
It was a crew that promoted “a stuttering existence,” not fluent speech. “They broke every stereotype I had about stuttering,” Reitzes says. “I met the coolest, smartest, funniest, handsomest stutterers. I loved these people.”
Over the next few years, he became more comfortable with his speech, eventually earning a degree in speech-language pathology at New York University. Now, in addition to his speech-therapy practice, Reitzes runs the podcast StutterTalk, whose episodes have titles like “Breaking up with Fluency” and “The Stigma of Stuttering.” He speaks with “voluntary stutters”—fake, stutter-like repetitions designed to give him a sense of control. (Voluntary stuttering, although it seems counterintuitive, is a common feature of many stuttering therapies.)
“I tried so long to be happy without stuttering, but it didn’t work,” Reitzes says. “For me, talking about stuttering”—which was only possible once he stopped hiding it—“made all the difference.”
Koroll wouldn’t take the “magic pill” now, but he didn’t always feel that way. For years, he tried a series of speech therapies, but the effects never stuck.
The turning point for Koroll came during a job interview several years after graduating college, he says, when an interviewer told him that, because of his stutter, he couldn’t hire him. Koroll sank into depression, eventually ending up in a hospital. It was there that he decided he had had enough of speech therapy.
Koroll had been going to NSA meetings and conferences for a few years, but after he let go of trying not to stutter, he threw himself into the community. Within a few years, he was volunteering as the adult-programs coordinator for the NSA, and then as the chairman of the board.
“For some people who stutter,” Koroll tells me, “this is the only time of the year when they feel safe and welcome.”
I think back to his words during the speeches at the opening ceremony, the ballroom at the Baltimore Marriott Waterfront filled with an attentive crowd—no one raises an eyebrow when speakers pause (or “block”) for 15 or even 30 seconds between words. This extreme attentiveness is something I notice all week: While fluent people, perhaps in an effort to be sensitive, tend to look away when someone is stuttering, conversations here are defined by unbroken eye contact through prolonged stutters and silences.
Much of the NSA conference is about remembering that “it’s okay to stutter,” but there are conflicting messages flying around, too. Specifically, it’s hard for some people to take “We are the cure” literally when the organization also puts resources toward finding a medical cure.
“There’s this sort of cognitive dissonance,” says Chris Constantino, a stutterer and conference attendee who is working toward his Ph.D. in speech pathology. “The NSA is, on the one hand, saying it’s okay to stutter, but speech pathologists and researchers continue to try to get at the underlying cause of it so it can be eliminated.”
Others don’t feel as though the community belongs to them. “It’s very friendly with [speech-language pathology], and they’re promoting acceptance, but they still think it would be better if we didn’t stutter at all,” says Erin Schick, who blogs at the disability-rights-inspired website Did I Stutter. She’s been to NSA chapter meetings, but not the conference.
Since the mid-1990s, the NSA has become increasingly friendly to speech-language pathologists and researchers—in fact, at the closing ceremony of the 2015 conference, Reeves introduced a video targeting high-level donors for stuttering research. His goal, he says, is to raise several million dollars from NSA members so that the organization can help direct future research projects.
At the conference, the crowd was mostly quiet as the words “What if you had a chance to free the voice of millions of Americans … for generations to come?” flashed on the screen. Immediately afterwards, the Baltimore City Commissioner of Health Leana Wen delivered a keynote speech in which she talked passionately about learning to embrace her stutter.
Much of Wen’s address had to do with the therapy she received from the speech pathologist Vivian Sisskin, a University of Maryland professor who encouraged her to stutter openly. “The moment I try to hide my stutter,” Wen told the crowd, “is the moment I feel shame about who I am … It is a core part of my identity to be a person who stutters.”
Sisskin’s approach, which she calls avoidance-reduction therapy, is based on the notion that although stuttering is neurological, the majority of a stutterer’s suffering is caused by his or her anxiety and negative reactions around the disorder.
“I used to talk about avoidance-based issues [to other speech pathologists],” Reitzes says, “and people would look around like, ‘What is he talking about?’ I don’t sense that anymore. I think there’s some greater understanding that stuttering is more than what you hear.”