Stutterers reach beyond the medical model of disability.
Originally published in The Baffler. Illustration © 2019 by L.T. Horowitz.
THE LIGHTS DIMMED IN THE HOTEL BALLROOM. Several hundred people, including myself, waited for the surprise announcement.
We were in Baltimore in 2015 for the annual convention of the National Stuttering Association (NSA). It was an emotional weekend, as it always is when stutterers gather en masse. These conventions are the rare time when we are in the majority. At home, we wonder how listeners will react to our speech, with its long silences, guttural fillers, and randomly repeated words and syllables. We brace for impatience or even mockery. Here, we set the pace of the conversation. No one finishes our sentences. No one laughs nervously or breaks eye contact. We feel temporarily, blessedly normal, unified and refueled for the return to daily life.
That unity, though, on this occasion, was about to fray.
The music began. On the ballroom screen flashed heart-tugging pictures: a child wishing on a dandelion; another tossing petals into the air. Interspersed were photos of scientists in lab coats, filling test tubes and studying brain scans. A caption overlay the images. “What if you had the chance to free the voice of millions of Americans for generations to come,” it said. “Would you do it?”
Then came the pitch: NSA was launching a research initiative “aimed at cracking the code for stuttering and discovering a potential cure.” Not everyone would understand the urgency, the caption said, but the organization hoped for “a few visionary leaders” to fund the endeavor. The music soared. A hilltop full of children, reminiscent of that 1970s Coca-Cola commercial, stared back at us. “Don’t delay,” the two-minute video concluded. “Our children are waiting.”
I could see some of my seatmates misting up. Stuttering can be a beast, affecting everything from employability to romantic prospects. Even ordering a pizza can be exhausting. Speech therapy can help us talk with more ease, but doesn’t offer a cure. Who wouldn’t feel inspired by the prospect of a drug or device that might lift our daily burden?
Me, for one. As the lights came up, I felt puzzled and blindsided. Curing stuttering, I thought, would eradicate the very condition that defines us as a community. The text messages lighting up my phone indicated that I wasn’t alone.
Like virtually all disabilities, stuttering has long been viewed through a medical lens—as a pathology in search of neutralization, an obstacle to a successful life. That lens is embedded in the language of speech impediments and speech pathologists. At best, stuttering has been framed as a “despite” condition: we can be happy and productive despite how we talk.
Some of us, though, have been trying to flip the paradigm, to reframe stuttering as a trait that confers transformative powers. We wear our vulnerability on the outside, and that invites emotional intimacy with others. We slow down conversations, fostering patience. We give texture to language. We gauge character by our listeners’ reactions. We are good listeners ourselves.
This impulse is hardly original to stutterers. We’ve drawn ideas from other minorities: autistic people, whose “neurodiversity” model declares that a society is richer when it embraces a wider range of thoughts and behaviors; gays and lesbians, who in 1973 convinced the American Psychiatric Association to depathologize homosexuality; and deaf people, whose well-developed language and culture have led some members to talk about “Deaf Gain” rather than “hearing loss.” A few years ago, some of my friends started talking about “Stutter Gain,” the idea that we stutterers, along with our smooth-talking neighbors, are better off for our dysfluencies.
From that perspective, the search for a “cure” feels wrongheaded: more like a homosexuality cure than a cancer cure. “To me, it feels a little bit eugenic,” my friend Emma Alpern, a New York copy editor and a stutterer, later told me for a radio report that aired on WHYY. “I don’t like the idea of us being wiped out.”
After the video, I gathered with some friends who shared my uneasiness about the new research initiative. I suppose those excited about a potential cure did the same. In the Baltimore ballroom, I looked across the fault line, wondering how our similar trajectories led us to such radically different conclusions.
The Talking Cure
There is, of course, an existing body of research about stuttering, which strikes about one percent of the population, more often men than women. Though the precise cause remains unknown, scientists associate it with differences in brain chemistry, including high levels of the neurotransmitter dopamine. There’s evidence for a genetic contribution, too. Recently, researchers engineered mutations associated with stuttering into mice and then listened to the calls that pups make when they’re removed from the nest. The “stuttering” mice had more gaps and pauses in their vocalizations than their “fluent” littermates.
That’s the current thinking. But for those of us who grew up in the 1970s, the medical model often led to Martin Schwartz. He was a New York speech pathologist who believed that stuttering resulted from “laryngospasms,” the tensing and locking of the vocal cords. By altering the breath to prevent these spasms, he claimed in the 1976 book Stuttering Solved, at least 83 percent of patients remained stutter-free after a year. Later, he notched that claim up to 93 percent.
I visited Schwartz’s office with my parents in 1978. I was a skinny, floppy-haired high-school student. As I recall it, Schwartz chatted with the grown-ups for a while. Then he turned to me. “I have one question for you,” he said. “What is your name?” I opened my mouth, but nothing came out. My chest constricted and my face contorted and I made choking sounds. It was a perfect setup and it worked: we signed up immediately for a two-day group intensive, followed by a year’s worth of remote therapy.
Those two days gave me tools I use even today. After the year, though, I still stuttered, making me a failure by Schwartz’s yardstick. Colleagues later disputed Schwartz’s numbers. In 1997, he told a stuttering listserv, “There is an assumption underlying the request for peer reviewed data: that I am interested in persuading others of the value of my approach through scientific means. Let me state categorically: I am not.” Schwartz is now retired and most recently promoted a new stuttering treatment involving vitamin B1. Reached for comment, he stood by his old therapy claims. But he but did not want to engage his former critics, saying, “I have moved on.”
I stuttered throughout college, and then through my first journalism jobs. With each career relocation, I switched speech therapists. Still, I saw no improvement, and my frustration grew. “Barry described some severe blocks during which he felt as if he had pulled a muscle in his throat or neck,” a clinician wrote when I was twenty-seven. “He described himself as very discouraged with his speech and commented, ‘I have not reconciled myself to the idea that there is really hope.’” That year, I quit speech therapy for good.
The seeds for my current thinking took root four years later, in 1992, when I attended the World Congress for People Who Stutter in San Francisco. It was thrilling to meet others who talked like me, and who were successful, kind, and good-looking. It was also the first time I heard anyone describe stuttering as a gift. “As stutterers, we were specially trained to give people insights into themselves, to make people more patient—with themselves, not us,” author Kare Anderson told us. I scribbled down her words like Gospel.
That gathering, and the many that followed, helped lift me from the hopelessness that my clinician correctly noted in my records. Grateful for new friendships, I eventually stopped viewing my stutter as something that required fixing.
As I moved away from the medical model, though, the organization that serves as our umbrella clung to it. Even though the National Stuttering Association’s 2015 research initiative fizzled, the NSA’s vision statement, until earlier this year, said, in part, “We will be a catalyst for research into effective treatment for stuttering while encouraging the search for its cause and cure.”
The NSA’s board chair is Gerald Maguire, the chair of psychiatry and neuroscience at the University of California, Riverside’s School of Medicine. He’s a respected drug researcher and a stutterer himself. Maguire declined several interview requests, saying he was overwhelmed by media interest in his latest research breakthrough: in August, he revealed in the Annals of Clinical Psychiatry that the dopamine blocker ecopipam reduced stuttering symptoms in five adults. This opens the door for a double-blind trial next year involving more than one hundred participants. If ecopipam becomes the first Food and Drug Administration–approved drug for stuttering, Maguire said in a statement, it would bring “hope and empowerment” to millions of people.
Maguire isn’t shy about his quest for a fluency pill. “It may be bold for us to say ‘cure,’ and that’s a four-letter word, but I really want us to start thinking about that,” he told the podcast StutterTalk in 2016, as he took the helm at NSA.
When I talk with others who stutter who want to put our collective resources into medication research, I can hear the corrosive effect of a lifetime of stigma. “From the time I was a child,” Frank Stechel, a retired vocational rehabilitation counselor from New Jersey, told me, “the teasing, the bullying, the fear, the anxiety that came with talking produces an entire mindset that simply makes you less confident in yourself. And while I’ve certainly matured, and I’ve certainly grown in terms of my abilities to interact with others . . . [and] to assert myself, . . . going into a situation where I’m going to stutter is still a source of chronic anxiety for me.” Just before Rosh Hashanah, Stechel told me that he planned to bring in the Jewish year by praying for a cure.
New World Disorder
Can we stop believing that the problem lives inside our bodies? Might the real problem lie in a society that, in its quest for order and efficiency, makes no accommodation for people who speak (or walk or think) differently? Might the solutions lie there too?
“Yes, it’s hard to stutter in this world,” says Joshua St. Pierre, an assistant professor of political science at the University of Alberta and co-founder of the “dysfluency-positive” Did I Stutter Project. “But, if we don’t understand the context”—from workplace norms to automated telephone menus—“we just internalize all that shit and think there’s something about stuttering in itself that’s bad. What would happen if you tried instead to create social conditions for these kinds of lives to flourish on their own terms?”
This taps into a bigger idea that transcends stuttering: a society in which everyone communicated and moved with ease, and became more alike, would be culturally and even spiritually barren. “Facing people’s disabilities causes us to touch a very raw part of our humanity that we are able to numb through the pace of our society,” says Vanessa Kelly Smith, an attorney by training who is deaf and who works in financial technology. “Whether you’re slowing down because someone is speaking in a cadence you’re maybe not used to in conversation, or whether you’re having to walk slower because you’re walking with someone in a wheelchair . . . that causes you to think about your assumptions. And that’s challenging . . . but it can be incredibly liberating.”
More than anyone, deaf people have resisted the idea of disability-as-defect. They have built a university, asserted political power, created complex languages, and developed their own cultural institutions. Some have fought the medical model by rejecting cochlear implants, which help simulate sound. And with the term Deaf Gain, they suggest that deafness enriches both the individual and society as a whole.
“My being able to model really good nonverbal communication and intuition—I would hope allows me to have really rich interpersonal relationships,” Kelly Smith says. Acknowledging the strengths that deafness brings doesn’t mean papering over the hardships. “When we can walk the interior terrain of ourselves, and tolerate the parts that are challenging, and the parts that are beautiful, and allow them to sit together—tolerate the complexity, the dissonance,” she says—“when we can do that in ourselves, we have the ability to offer that to others.”
We stutterers have been aware of Deaf culture for a long time because of the shared emphasis on communication. Newer to our radars are autistic people, with their growing advocacy of neurodiversity.
That term was coined in the 1990s, and the idea has gained traction throughout the twenty-first century. It’s a pushback against the assumption that there is a single, healthy way of thinking. “Search as you might, there is no brain that has been pickled in a jar in the basement of the Smithsonian Museum or the National Institute of Health or elsewhere in the world that represents the standard to which all other human brains must be compared,” wrote psychologist and educator Thomas Armstrong in the American Medical Association’s AMA Journal of Ethics in 2015.
Neurodiversity advocates reject the idea that autistic people need to be mainstreamed into making eye contact or avoiding self-stimulating behaviors like rocking and hand-flapping. “The medical model overreaches,” says Ari Ne’eman, co-founder of the Autistic Self Advocacy Network and now a PhD student in health policy at Harvard University. “For most of us, the way to be happy and successful and well-integrated into society does not necessarily involve imitating typical function. In fact, sometimes imitating typical function or typical appearance can actually be harmful.”
Self-stimulation, for example, helps autistic people manage difficult sensory environments. “The energy and time and effort that’s invested in trying to appear normal is actively in competition with, and actively harms, the underlying objectives that people have for their own lives,” Ne’eman says.
Plus, autistic people bring strengths: hyperattention to details, for one, and the ability to discern patterns. Those are important skills today and might have conferred evolutionary advantage in the past.
“If you got rid of all the autism genetics, you’d get rid of scientists, musicians, mathematicians,” Temple Grandin, a professor of animal sciences at Colorado State University who is herself autistic, told New York magazine eleven years ago. “Some guy with high-functioning Asperger’s developed the first stone spear; it wasn’t developed by the social ones yakking around the campfire.”
The Naked and the Misread
Last year my friend Chris Constantino wrote an article in the journal Seminars in Speech and Language titled, “What Can Stutterers Learn from the Neurodiversity Movement?” Constantino, who stutters, is an assistant professor in communication sciences and disorders at Florida State University. He argued that, with both stuttering and autism, the medical model mistakenly conflates natural variation and disease.
Yes, both conditions cause suffering, he acknowledged. That doesn’t make them pathological. As with gays and lesbians, “much of the distress of autistic people and stutterers is the result of severe circumstances and a hostile society rather than anything having to do with their bodies and minds.”
Constantino made a nuanced argument: we can extol the value of stuttering while also acknowledging that dysfluent speech takes effort, and that stutterers face discrimination. People who stutter might still want accommodations and therapy. Constantino himself worked as a middle-school speech therapist, but didn’t strive to make the kids fluent; instead, he taught them about self-advocacy, empowerment, and relaxed, shame-free stuttering.
Constantino’s article was a big step forward. What excites me even more, though, are the new conversations about “Stutter Gain”—how dysfluent speech really does enrich our, and others’, lives. Constantino told me the story of attending a bachelor party, where an acquaintance pulled him aside and confided that he feared inheriting his mother’s schizophrenia. “If he hadn’t heard me stuttering, we would never have had that conversation,” he said. “The fact that he recognized some sort of vulnerability in me is what gave him the opening to share his own vulnerability.”
In a time of curated social media images, the messiness of stuttering is a rare and inviting thing. “It’s as if we’re temporarily stripped of our clothing,” Constantino told me for the WHYY segment. “We’re temporarily naked. And we don’t have control over when we’re forced to be vulnerable. However, the more time you spend defenseless with others, the more chances you have to connect deeply with somebody, because they’ve seen you. And they’ve seen all of you. And all they need to do is reciprocate. All they need to do is strip down, too. And by stuttering, we give them that opportunity.”
I’ve experienced this reciprocity. Others have too. Abena Asare, an associate professor of Africana studies and history at Stony Brook University, always tells her classes upfront about her stuttering. “The fact that I claim it and own it and advertise it in every class—it frees the students to share things which feel vulnerable,” she says. Students confide in her about their own disabilities and anxiety, she says, and at the same time see a role model who doesn’t fit the mold. “[I can] show them: I stutter, I can lead the class, and I lead it excellently, and there are different ways to communicate.”
Once you crack open the Stutter Gain door, the conversation becomes more bracing. It veers deeper into the world of ideas, which might not seem immediately helpful when we’re stuck in the middle of a ten-second block or waiting for a callback after a job interview. (I do know that, as a college-educated guy with a professional career, I have more leeway to play the long game.) But the ideas unstick us from old thinking and can even be fun: we’re no longer pleading for compassion or equality, but rather questioning whether efficient communication is such a good thing at all.
“There’s something interesting about stuttering in a world that moves at increasingly breakneck speed,” says St. Pierre, the Alberta professor. For most of human history, we measured time in lunar cycles, menstrual cycles, agricultural cycles. Today we rely on “clock time,” standardized and designed for industrial production. Clock time values efficiency; it has no patience for silences and repeated syllables. “Stuttering highlights that fact: that clock time runs roughshod over all these other ways of creating time, but that they still persist and are still important,” he says. “Stuttering interrupts this hegemonic order of time.”
Alpern, the New York editor, has the most playful take on stuttering, as befits someone whose livelihood involves words. Stuttering, she says, infuses speech with extra significance; it pushes language to the limits and exposes the “atmospheric potential of words” and their “strange physicality.” Plus, she argues, stuttering can be thrilling.
Alpern wrote an essay for Stammering Pride and Prejudice, an anthology published this year in the United Kingdom. (The British use “stammering” as a synonym for “stuttering.”) St. Pierre has a chapter; so does Constantino, who is one of the book’s editors. In hers, Alpern tells the story of ordering a “Bl-Bl-Bl-Blue Moon” at a bar and finding unexpected pleasure in the extra syllables. Part of the delight is in using a voice that is uniquely hers; part is the hard-earned absence of shame.
Part is physical: “that little loss of control that resolves itself so beautifully sometimes,” she writes. “I am falling through the air for an instant, then catching the ground again, like Fred Astaire pretending to trip when he dances.”
And part comes from sabotaging the machine—what St. Pierre calls clock time and Kelly Smith, the deaf attorney, calls the numbing pace of our society. “Maybe by privileging the atmospheric power of the stutter, we can resist what we’ve been taught to value about talking: efficiency, cleanness, and transaction,” Alpern writes. “Stuttering more suggests another set of speaking values: passion, disobedience, curiosity.”
“Eugenics” is a strong word, and not one that I want to use casually when talking about those seeking a pharmaceutical cure. I feel especially queasy when the word is aimed within the stuttering tribe. The impulse to find relief from a debilitating, humiliating condition is natural and understandable and good, even if we disagree on the definition of “relief.”
I discussed this with St. Pierre, who has studied and written about the connection between disability and eugenics. He distinguished between the “authoritarian” eugenics of the twentieth century, which included involuntary sterilization programs in the United States and Canada, and “liberal” eugenics of today, which devolve choice to the parents and involve genetic screening. The latter is sometimes called “newgenics” and is enabled by such advances as pre-implantation testing of embryos created by in vitro fertilization.
These technologies are already being used to winnow out people with disabilities. In Iceland, almost all pregnant women screen for Down syndrome and abort the fetuses that test positive, according to the BBC.
“On paper, the doctor is trying to give the parent as much possible choice about the kind of child that they have,” says St. Pierre. “But within a culture that, from the start, assumes that a disabled life is less valuable, and within a context where there isn’t adequate social support and structures to raise a disabled child, the end result is eugenic. People choose again and again against having disabled babies.”
Rosemarie Garland-Thomson, a professor of English and bioethics at Emory University, talks about “eugenic logic,” the idea that humanity would be better off without disability. St. Pierre says that logic could easily be applied to stuttering, and that the impulse is there in efforts to find a pharmaceutical cure. “That is the core idea that I resist with all of my being,” he says.
I raised this question to Maguire, the psychiatrist and NSA chair, but he again declined to talk. To him, when we advocate for drug development, it’s an expression of our power. “People who stutter have been ignored for years and stigmatized and we are finally standing up for the better care we deserve,” he wrote in an email. Asked about those who worry about eugenics, he wrote, “I must decline an interview which includes anyone advocating for further discrimination, isolation and stigmatization of those of us who stutter.”
Even within Maguire’s own organization, though, the conversation is shifting. NSA removed the word “cure” from its vision statement this year. Its 2019 research symposium focused on neurodiversity and featured both stuttering and autistic speakers. (Constantino helped organize the event.) We are still divided, but these small steps give me hope that we who want to celebrate stuttering are making inroads. Our words, no matter how dysfluent, matter.