Bodies Stuttering Genes: On Family and Communication
“Why would I need scientific corroboration to make my disability legitimate?”
Carlos tells me to think of chocolate. Think of steak. “My first time took thirty minutes,” he says, hunched forward in his folding chair. He smiles. “So no rush.”
“Thank you-u-u-u-u,” I say.
He hands me a sturdy plastic tube and a box of tissues. In a few moments I will position my mouth over the tube and begin to spit. When I draw back, a string of saliva will spin from my mouth, thin as a spider web. I’ll grab a tissue in response and find it transparent, scratchy, like the leaves dying on my mother’s crape myrtle back home. “Japanese beetles,” she sighed, just weeks before. “Nasty little things.” She rubbed a nearby leaf, once green and waxy, now spotted with holes. “All they leave behind are skeletons.”
But I am no longer in my mother’s garden. I am in a makeshift clinical laboratory three hundred miles from home, providing a saliva sample for the National Institute on Deafness and Other Communication Disorders. This research team—Carlos included—is attempting to locate more genes associated with stuttering. I am eligible to be a test subject for several reasons, the most important being that I’m a twenty-four-year-old person who stutters. I’ve stuttered since I began to speak and have never stopped.
The other reason my saliva is valuable to them has to do with my heritage. Another researcher showed me family trees where stuttering seems traceable, perhaps even inherited, from father to daughter or grandfather to grandson. In their attempts to uncover the causes of stuttering, they’ve already confirmed four genetic mutations that seem common in people who stutter. They’re hoping to find more, but their research is still novel.
“If you’re part of the 20 percent of stutterers who have one of the four known stuttering genes,” Carlos says, “you’ll receive a letter in about eight weeks.”
I nod, imagining the relief that would come if I had scientific proof of my stutter. In my selfishness, I imagine a banner proclaiming This is not my fault. But there’s an 80 percent chance that I won’t have a stuttering gene, not yet anyways. The research is still too early. There might be something else in my biology that they haven’t even thought to look for.
“Who else in your family stutters?” Carlos asks, making notes on my paperwork.
“My uncle.” I glance up suddenly. “Do you nnnnnnnneed his nnnnnname or phone number?” I ask, hoping the answer is no.
Carlos shakes his head.
After I give my sample, he explains, he’ll record me reading a passage. I cross through the archway and into the next room, sit in the closest chair and clear my throat, letting my saliva gather, gather, gather, until my lips tighten and spit trickles down the tube. I expect it to come quickly and in globs, like the men who dip chewing tobacco and spit into aluminum cans. But my mouth is drying fast, like water on asphalt. One minute it seems warm and damp, the next minute, it’s all gone.
Before arriving in West Virginia, my dad’s church spent weeks gathering bottles, blankets, breast pumps, and baby powder. We delivered them in boxes to a prison, one where women raised their babies, sang to them, slept with them, until one day someone came—maybe a relative, maybe a state worker—and held the tiny stranger, took him home, looked at him with hesitation. Prison babies: Inspect them; twirl them like thread. Aloud: Is he healthy? Whispered: Was she using?
Dad and I went as missionary volunteers. Some did construction, some cooked or sorted supplies. I was only fifteen at the time, and talked with the mothers who had minor charges and would be released in a few years. Once the babies were weaned and the milk ducts were dry, they were taken from the facility. Most of their children would be in kindergarten or elementary school by the date of their release. I wondered if the mothers wished sometimes to have never seen them, to not know how they slept or laughed or cried for them at night. Did knowing make it harder?
I knew nothing of motherhood. The closest I’ve come now is through my nephew: curls spun gold, tall for his age, smart for his age, five-year-old Montgomery. Sometimes I have dreams that Montgomery is in the road and I’m there, but there’s a car coming, sometimes a motorcycle or a semitruck. I push him to the sidewalk, knees scraped, crying—but he’s fine, mostly. His back is turned. Then I’m hit.
I wake from the dream shaken. How have I not felt love like this before? I think of the women in the prison holding their children, mouths to breasts, warm cheeks, rocking, surrendering into dreams.
Ten years have passed and yet I think about these women whenever I imagine my future family. Genetically, I could contribute brown hair and brown eyes—boring, but fine. Chubby cheeks and fingers. Stubbornness, excitability, a slow but unrelenting temper. Nothing too damaging.
But then there’s the stutter. If persistent stuttering can be passed on genetically, which experts now believe, then it may continue as an impediment within my family tree. There’s a high risk of sharing it with my children, or their children, or their children. Having kids despite all this feels careless, though my sister believes otherwise. “You stuttered as a kid,” she said once, while we folded clothes in her newborn daughter’s nursery. “And look at you now.”
I looked into the nearest mirror, wondering who there was to see.
My uncle and I have never spoken about our stuttering. For the first decade of my life, we lived two miles apart but only interacted on holidays. These were short, uncomfortable exchanges—not just because of the stuttering but because my uncle felt awkward around children.
He would ask me something like, “How-how-how-how’s school?” And I would say, “Fine,” and then we wouldn’t speak for another few months. It was peculiar to me, even as a child, that I knew my father kept a pen and metal ruler inside his shirt pocket; that he’s worn plain, white underwear his whole life (what my mother calls tighty whities ); that he always grabbed an extra biscuit when his mother used her special buttermilk recipe. But I know next to nothing about his brother.
There are things I’ve noticed about Uncle Bob, of course. He’s just under six feet tall, with hair dark and brown and, like all the men in his family, in decent shape except for a slightly protruding belly. Apart from his stutter, the most notable thing about him was always the sheer volume of his voice. Those who stereotype stutterers as meek have obviously never met my uncle. With a sharp pitch and volume at a constant high, you could wander into the back bedrooms of my grandparents’ house and still hear Uncle Bob talking in the kitchen. His abrasive way of speaking seemed similar, in a way, to my childhood aggression. As a kid, when I couldn’t use words the way I wanted to, the way I thought I should—I channeled the frustration kinetically, rough-housing constantly, giving my friends accidental bruises and nosebleeds. For years, my sister had a small scar on her arm where my fingernails once dug. I had a tendency to snap, to become brutish and forceful, what my family called “going full Tasmanian Devil.” Though the aggression subdued with age, I sometimes wonder if the outbursts were my nonverbal way of demanding that the world stop and listen.
Uncle Bob spoke almost exclusively about his job with the city government and the Jack Russell Terriers he bred. And like his father and brother, his favorite sport was racing. He had strong opinions about these things and no opinions about others. His wife, for instance, came from a family of cello players. After four decades of marriage, they must have had conversations about string instruments versus brass, or what her family loves about the orchestra, or even discussed their favorite records as teenagers. But for whatever reason, these are conversations not even my father can imagine my uncle having.
I asked my father offhandedly one day if anyone in the family ever discussed Uncle Bob’s stutter. Surely his mother, or father, or sister mentioned it? What about Uncle Bob himself?
“Never,” he said.
I didn’t ask him to elaborate.
At the National Stuttering Conference in Atlanta, a professor from the University of Mississippi spoke on emotional intelligence. He made one of those philosophical observations that sound apparent once you hear it. “Emotions are a foundation for thinking,” he said. “For people who stutter to really connect, we must have a higher understanding of our emotions and ourselves.”
In 1997, two leading psychologists defined emotional intelligence as “the ability to perceive emotions, to access and generate emotions so as to assist thought, to understand emotions and emotional knowledge, and to reflectively regulate emotions so as to promote emotional and intellectual growth.” Emotional intelligence is associated with optimism, flexibility, stress management, and embracing realistic situations. Those with a higher emotional intelligence are able to identify and describe emotions in themselves and others.
“Human understanding empowers us to overcome stuttering,” the professor said. I looked around the lecture hall and heads were nodding—especially my new friend, Julia, whose parents were both persistent stutterers.
After the lecture, we walked to the nearby food court. Julia attended fluency shaping camp about a year ago and her stutter has practically dissolved, though it still flares up occasionally. I asked her if having parents who stutter made the condition easier. “You mmmmmust’ve had good talks about it,” I said.
She cast her eyes down. “You would think so, but no,” she said. “We never talked about it.”
“W-w-w-w-w-wonder why,” I said quietly.
Julia shrugged. “They just weren’t there for me,” she said, reaching into her wallet. She looked at me while the cashier gave her change. “Which honestly, had nothing to do with stuttering.”
I was twenty-three when I decided to call my uncle for the first time.
“I don’t have his number,” my mother said. “You’ll have to ask your dad.” I paced around the kitchen island, cell phone against my ear, chewing on a pen cap.
“I don’t think he’ll give it to me,” I admitted. My father and his two siblings have barely spoken since they settled their father’s estate. There were too many problems after their father’s death, too many miscommunications between the siblings. My mother has long criticized my father’s side for their secrets. In turn, he’s pointed out the shortcomings of her upbringing—the crippling sensitivity, the wild unpredictability.
“We never swept things under the rug,” my mother would say, proudly.
My father would smirk. “Maybe some things are better left down there.”
Out the window, I saw clouds rolling overhead—odd-shaped and threatening. But the only storm I expected was the one I’d have with my father, who is generous and gentle, who sends me messages at random just to say he’s proud of me. He’s wary of anything having to do with his siblings.
“Just call him,” my mom said. So I started dialing.
I could tell by the sounds in the background that I caught him in the middle of something. There’s the shrill, electric pulse of a drill and several voices in the background.
“Sssssorry to bother you,” I said quickly. “Just hoping to get Uncle Bob’s phone number.”
He paused. “What for?”
“Just to talk about something.”
I heard him walking, breathing into the receiver. He shut a door behind him, entering his office. “Okay . . . what do you need to talk about that you can’t tell me?”
“Nothing,” I said, surprised by his tone. “Nothing, I just . . . wanted to talk to him about ssssstuttering. About how we both have one. I think it’s time.”
He sighed, adjusting his cell phone. I imagined him rubbing his hands clean with a grease-stained rag, the red one he keeps in his pants pocket. “I don’t think that’s the best idea.”
I opened the front door and sat on the porch. The warm heat of the approaching storm struck me. “Why not?”
“He doesn’t talk about that kind of thing,” he said. “That would be like, going up to cheaters and asking them about their cheating. They’d just deny it.”
It took me a minute to process. “Wait . . . so you’re saying ssssstuttering is as shameful as a-a-a-adultery?”
“No, no.” His voice was rushed, his inflection high. He wanted to avoid an argument as much as I did. “I just don’t see him taking it well, is all. But you’re welcome to try.” He took a deep breath. “Who knows? Maybe he’ll surprise us.”
He sent me Uncle Bob’s phone number a moment later—but by then, I’ve lost my eagerness, my nerve. I sat on the porch swing and thought about how my father cried after speaking to his mother on her deathbed, in more shock than sadness, as she chose her last moments to reveal things long kept buried. “The things she told me,” he had said, shaking his head, his eyes cast sideway.
“What did she say?” I asked, begging to know. But I was only fourteen at the time. He shook his head and never answered.
I brought my feet to the porch swing, hugging knees to chest. In twenty minutes, rain would fall like heavy, slanted slaps. Thunder would shake the windows and doors. The dogs and I would run inside, huddled over beach towels. The power would go off and the dogs and I would sit in silence, their eyes watching me, wondering what I’ll do next.
While he finishes my paperwork, Carlos makes small talk.
“So,” he says, over the click of his mouse, “do you want to have a stuttering gene?”
It’s a personal question, one I imagine he wouldn’t ask if he hadn’t held a tube of my saliva just moments ago.
“Proof would be nnnnnnice,” I say, though I have my doubts. What am I supposed to do with that information if I receive it? Do I allow my fear of continuing the gene to prevent me from having children?
He shrugs. “I don’t think it makes a difference either way. You’ll live your life the way you’ll live it,” he says. “Right?”
“Right,” I say, agreeing instinctively, wondering if I mean it.
In the weeks following, I wait. I wait for the letter, for the confirmation that stuttering was a genetic inevitability for me—as integral to my DNA as hair or eye color. I compulsively check my parents’ mailbox, then my mailbox, then their mailbox again. Wondering about the test results becomes a daily fixation. I give the post office a forwarding address when I move, nervous the letter might get lost in the shuffle. Eight weeks pass—then ten, then twelve.
When the letter doesn’t come, part of me feels slighted—as if my identity depended on this proof. Eventually, though, a stronger self begins to surface: more realistic, more self-assured. Why would I need scientific corroboration to make my disability legitimate? Is my speech itself not audible confirmation, measurable as a sound wave? And more importantly: Isn’t the validity of my own experience enough?
My trepidations towards motherhood are now quite ordinary. If I have kids, how will I raise them? What will I name them? Will delivery hurt as much as I imagine? Though the fear of passing on my speech impediment is still present, its power in my life has begun to finally cease.