The shame of the adult stutterer

As a boy, I thought I'd grow out of it, but I didn't. Life would be so much easier if I could just say my name

Topics: Life stories, Disability,

The shame of the adult stutterer

I should write this first, since it’s what people notice first: I stutter when I talk. I involuntarily extend certain letters or sounds and, more conspicuously, experience total “blocks,” wherein my lips, face, throat and chest all tighten, my breath stops, and no sound comes out at all. I am 26, and suspect that I’ll stutter for the rest of my life. But as a kid, I figured that just as I’d grow, one day I would speak normally, and get on with my real life. That life never started, and I remember the place where it became clear that it wouldn’t.

“Just because I can’t speak doesn’t mean I don’t have anything to say.” A poster with those words hung in the waiting room at my speech therapist’s office, a place where I spent an evening or two a week during much of my childhood, from the age of 7 until 12, and then intermittently until I went to college. The phrase was meant to be empowering, but even then, I saw it for what it was, a plea to the wider world: Please excuse me, but I’m about to speak, and it’s going to take a minute.

I was always uneasy in that room. The toys there were for younger kids; most of the furniture was tiny. It was a room for children, just as the reason I was there, my stutter, was a children’s disorder. At least, that’s what I hoped when I was young, and then later, when I wasn’t young anymore, what I told myself in disgust. Each object in the room — the stuffed animals, the toy train set — was a reminder of the people who passed through every day, my people, the disabled and disordered.

I tried to ignore the voice coming from the other room, where a patient like me was trying — and failing, I hoped, since I was failing — to learn to speak fluently. I tried, as well, to ignore that patient’s mother or father, who I was certain was using that moment to reflect on the unfortunate turn their lives had taken, how they’d never thought they’d be sitting in a room like this. But such thoughts really weren’t about those parents, but instead about mine, who were spending thousands of dollars for this and who had driven an hour to get me to this room — trips I recall always being late at night and over snow-covered roads. (My memory here is surely false, though I think my parents did, in fact, spare me the sad prospect of going to therapy during the summer.)



Often at night, in bed just before I’d fall asleep, I imagined my life without a stutter. One day I’d be cured, and everything about me would be different and better. It wasn’t a crazy idea. All the great stuttering heroes have one thing in common: They don’t seem to stutter anymore. James Earl Jones was the shining example I heard about again and again. He had a terrible stutter as a child, but went on to be the voice of Darth Vader, the badass of the universe. But therapy wasn’t working. Though I had learned techniques to speak more fluently — slowing my speech, easing into words, controlling my breathing — I could never seem to use them in the classroom, or on the phone, or when I ordered food at a restaurant. The hour or two a week I spent playing Trivial Pursuit or reading aloud with my therapist was so unlike the rest of my life — speaking was so comfortable and easy — that it came to seem useless and false.

The worst moment in the waiting room was when the hour changed and my turn came. Then I underwent a dismal transfer: the current patient out, replaced by me. It must have been the same few people who went before me each week — just as my appointments were regular, so must others have been — yet I cannot remember anything about my fellow patients. That makes sense, though, since I rarely met their eyes, and under no condition would I speak to them, since the two of us in conversation would have been a reminder of the shameful thing we had in common. And so I ignored the other kids, never joined group therapy classes, and convinced myself that we shared nothing. They were weird, stupid or pathetic. I was different.

As I grew older, that aversion only increased. I stopped reading about stuttering, ignored the latest research, and stopped seeing a therapist. I became, finally, a petulant, terrified subject of a malicious and incomprehensible god. One of my biggest fears, along with the low hum of fear that I always felt about speaking, was the prospect of meeting other stutterers, and in hearing their voices and seeing their contorted faces, confirming my own grotesqueness.

—–

You know this kind of story. One that follows an arc from despair to self-acceptance and emotional growth. Well, we’ve covered despair, or something close to it. So, now, it’s straight ahead to acceptance, right? Let’s find some peace, and get on with it. I even have the perfect setup, because last spring, after years of hiding from other stutterers, I finally started to meet them. I began reporting for a story about adult stutterers in New York, confident that if I heard their stories, I’d start to understand my own.

Three million adults stutter in the United States, roughly 1 percent of the population. Unsurprisingly, then, my people were not hard to find. There’s the National Stuttering Association, headquartered in midtown Manhattan, which sponsors local chapters in the five boroughs and throughout the United States. And there are other groups: the Stuttering Foundation of America, the American Institute for Stuttering, Friends (a group for young people), and Passing Twice, a group for gay, lesbian and transgendered stutterers.

I was suspicious of self-help, and became more so when I read the National Stuttering Association’s mission statement, which ends with this groaner: “We who stutter, and those who support and help us, are not alone. Together we are strong.” I expected stale coffee and teary hugs, but the meeting I attended at Brooklyn College on a weeknight in March was more complicated than that. In a sterile, brightly lit classroom on the second floor of an old building, a handful of people, mostly young men, spoke eloquently about their lives, and I joined in. The same frustrations came up repeatedly: how we felt we had failed our parents, who so desperately wanted us to get better; how we thought we would outgrow stuttering but never did; how embarrassed we were at the various acrobatics of avoidance we practice to hide our stutter.

That night I was both at ease and entirely uncomfortable. When a person blocked or set off on a run of errant sound, I tried not to break eye contact, but I felt myself nodding in a form of pitying encouragement. Worse, when someone stuttered halfway through a sentence or word, I jumped to finish it, at least in my mind if not out loud, something I’m sure people do when I’m speaking. With deep shame, I realized that I can’t stand the way stuttering sounds.

Still, I was intrigued, and for the next few months, I made what seemed at the time to be an earnest effort to understand adults who stuttered. I went to a meeting of the Manhattan chapter of the NSA, and spent a day walking around the city with Steven Kaufman, the Long Island chapter leader. I had lunch with Taro Alexander, the founder and artistic director of Our Time Theatre Company, a nonprofit that helps kids who stutter write, direct, choreograph and perform in stage productions. (He knows James Earl Jones, and shared the reassuring news that Darth Vader still stutters.) And I got in touch with Gregory Snyder, assistant professor of communicative disorders at the University of Mississippi, who talked like a stuttering vigilante: “What if stuttering isn’t a bad thing? What if stuttering just is? If we stop thinking that stuttering is a bad thing, then there is nothing to feel shame over, or embarrassed about.” I was almost ready to throw a fist in the air. Solidarity, brother!

Soon, I was talking more than listening. I sat in on an episode of StutterTalk, a podcast hosted by Eric Jackson and Peter Reitzes (both stutterers), and later spoke, as part of a panel, to Peter’s class of speech pathology students at Long Island University in downtown Brooklyn. The panelists all knew each other through Peter, but also seemingly from way back — from NSA group meetings, Our Time events, or the far reaches of what I was starting to see as the adult-stuttering social network.

That night, several people on the panel spoke excitedly about the upcoming NSA national conference, which was being held in July at a Westin in Scottsdale, Ariz. (There was much talk of a pool.) I left thinking that I’d buy a plane ticket and go, something that Steven Kaufman had been urging me to do since the moment we met. A stuttering convention seemed a bit ridiculous — I was picturing Trekkies — but I imagined that walking into a giant room full of people like me would represent the final great coming to terms with my stuttering. But I never bought a ticket. Since last spring, I haven’t been to a group meeting, I’ve declined invitations from Eric Jackson to record more podcasts, and I delete e-mails from Our Time, the stuttering theater group. I had thought I was undergoing some transformation by meeting other stutterers and talking to strangers about my speech, but I realized that I’d been faking it, not maliciously, but nonetheless simply parroting the wisdom of these well-adjusted stutterers. I talked about the benefits of being open and honest about my speech, sharing my feelings — all things I’d never done. I didn’t want stuttering to be at the center of my life; my great story idea — the self-loathing stutterer meets his people and comes away changed — finally just seemed opportunistic and crass.

—–

Stutterers, it seems, often ask each other a question, in low tones, as if acknowledging its sordid nature: If there were a magic pill to cure stuttering, would you take it? Most of the people that I met — Gregory Snyder, Steven Kaufman, Taro Alexander, Eric Jackson — said they wouldn’t. I believed them, even envied them, but couldn’t imagine refusing an easy cure. After all, my thinking about stuttering has long fit into one of these categories, depending on my mood:

Why this? My life would be perfect if I could speak normally. I’d be fearless and famous.

Why me? Why didn’t I work harder as a kid — do my therapy homework, implement the techniques more diligently — when my chances were greater to eliminate stuttering altogether?

Why you? Why can’t the world just celebrate my way of speaking as different and wonderful, rather than disordered? I’m a perfect snowflake, dammit.

It’s perhaps here that I should say that despite bouts of stuttering-related dread, I was a confident and happy kid — a good student, never last picked for sports, suitably popular. My parents made it clear that stuttering should never be a handicap, and it never was. I rarely suffered from the emotional side effects of stuttering — I wasn’t shy and was never silent. The small town in Maine where I grew up was peopled with compassionate teachers, parents and coaches, most who made me feel exceptional in a variety of salutary ways, and normal in the ways a kid wants to be normal. That sense of being normal has continued into adulthood.

Well, almost. Like most people, not a day goes by that I don’t speak with a stranger — ordering a cup of coffee or a beer, answering the phone when I don’t recognize the number (everyone screens calls, but I do it more), and most pointedly, introducing myself at work or a party. I try to get through every one of these moments without stuttering, to have as many interactions where it’s not the first thing about me that people notice. But it never works, because I stutter more when I am nervous, and I never know when I will block. The most basic modern interaction — the exchanging of names — is a daily stage for failure. I start to speak, but block on my first name, leaving people, well … puzzled. They gape, laugh, look away or keep their eyes fixed straight ahead, making the honorable effort to seem as though nothing strange is happening. The effect of all this is humbling, not in the good way that leads to empathy, but in the sense of being laid low. Though I don’t blame them. Stuttering is strange. It is unexpected. It introduces long silences into speech. And silence makes people uncomfortable.

Most of the stutterers I met wrestled with the competing desires to accept how they talk or to “get better.” Advocacy groups such as the NSA emphasize that while fluency can be greatly improved with therapy, especially when started at an early age, there is no cure for stuttering. A small number of patients have seen improvement when taking anti-anxiety medication, though these drugs have terrible side effects, and the results remain inconclusive. Others have experienced great benefits from in-ear prosthetic devices that provide altered and delayed “auditory feedback.” Roughly the size of hearing aids, these devices replay the speaker’s voice at a higher pitch and with a short delay, acting on the long-known fact that stutterers rarely, if ever, experience speech interruptions when speaking in unison with another voice. (I never do.) And recently, researchers discovered what they identify as a stuttering gene, which would put to rest the idea that stuttering is a behavioral disorder. But for many people, despite hard work, stuttering persists.

It would be nice — for this story, at the very least — if stuttering had provided me with compelling or unique insight into our common experience. Do I have a greater capacity for empathy, or a heightened sensitivity to the secret torment of others? No, I do not. But I have lately been asking people this question: What are you afraid that others first notice when they meet you? Most people point to external deficiencies –  I’m plain or weigh too much, I have ugly clothes or I sound stupid when I’m nervous — that much like my stutter, might be at once so frustrating and terrifying because they put us squarely in the power of others; they define us before we get to define ourselves. My stutter is what I’m most embarrassed about in a public sense, and most ashamed of in private. But if a magic cure ever came, I suspect something would take its place. The voice of self-criticism rattles around in all our heads. We endure that voice, by staying too busy to hear it or recognizing that it’s never as accurate as it is insistent. But it’s there — just another condition of life, of the real real life, that little boys, despite expansive imaginations, can never quite foresee.

Ian Crouch is a contributor to the Book Bench blog at newyorker.com. He lives in New York. 

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