I Donated My Stuttering Brain to Science

This is dis/fluent, a column by Sophia Stewart on stuttering, self-understanding, and disability in private and public spheres.

On a recent summer afternoon, I lent my body to science. In a little laboratory a couple blocks from Washington Square Park, I spent two hours lying on my back with my head cradled by a giant white machine, while technicians in another room listened to me read a list of words. I only remember three of them: Philadelphia. Photosynthesis. Sophia.

A week before, I’d received an email from the National Stuttering Association, of which I am a member, with the subject line “Local (NYC) stuttering research study seeking participants.” They were looking for subjects—adult stutterers who were native English speakers—for a study about the “temporal dynamics of stuttered speech,” whatever that meant. I’d never participated in any kind of study before, let alone one that dealt directly with such a sensitive, significant facet of my life. There was mention of modest compensation and I needed money, so I inquired.

I first spoke over Zoom with the clinician-scientist who headed up the study and would determine my eligibility. He was mellow and soft-spoken as he explained his research to me and then disclosed that he was also a person who stuttered. The dynamic of our conversation shifted: I no longer felt like an anomalous specimen under a soulless microscope; rather, we were two people of shared experience, working together to figure ourselves out.

He screen-shared a document made up of floridly written paragraphs about a remote region of Italy and asked that I read it for him. I was alone, in my bedroom, speaking with a person who stuttered, who knew that I was also a person who stuttered, and in fact wanted to hear me stutter. But reading aloud is an arduous task regardless of circumstance, unpleasant at best and painful at worst. I halted and sputtered and gasped through the passages, an oral trudge so grueling for a moment I considered slamming the laptop shut and putting an end to it.

When I finally finished, red-faced and defeated, my throat was sore from producing so much strained speech. Hot shame diffused across my cheeks and I held back tears surging in the corners of my eyes. But I knew at least my dramatic show of disfluency would prove me eligible for the study, which meant eligible for the payout. You’re here for a little extra rent money, I reminded myself, a quid pro quo. I wondered if the sum was worth the still-fresh humiliation. The clinician-scientist scheduled my lab visit for the following week. I told no one.

*

The day of my appointment, the study now near at hand, all thought of rent money disappeared. I woke that morning energized by a sense of purpose. How noble I was to share myself this way, for science! To contribute data to the corpus, to open up my brain to the world! Maybe I would be cited in future research papers as Patient 123 in the landmark XYZ study, that anonymous Samaritan whose data transformed our understanding of stuttering forever. Yesterday’s sore throat and bruised ego were small sacrifices for the difference I could be making to the field of speech pathology.

Yesterday’s sore throat and bruised ego were small sacrifices for the difference I could be making to the field of speech pathology. 

A few hours before I left for the lab, the clinician-scientist emailed to ask if I had any metal in my body, as metal interferes with the signal from the MEG machine. He also requested that I avoid wearing any metal that would be difficult to remove.

“For example,” he wrote, “some women have bras with metal wiring in them.”

I assured him I had no metal in my body—no cavities, pacemakers, nothing—and dug out a wireless sports bra from deep in my closet.

I arrived at what Google Maps said was my destination: a towering black building conspicuously labeled a Center for Neural Science. Neural science felt oddly cold and clinical. Stuttering is so much more than a matter of neural science—it’s an emotional experience and a physical strain, not to mention it’s freighted with social and cultural meaning. But seeing the phrase neural science was also reassuring, proof that disfluency is not a personal defect or a psychosomatic problem. It is, fundamentally, a neurological phenomenon. As much as I hated being told that my stutter was “all in my head,” I liked being reminded that it was localized in my brain.

After a few minutes of waiting in the lobby, the clinician-scientist arrived. I was hoping he’d be wearing a stiff white lab coat; instead he descended toward me in a fitted black T-shirt, dark jeans, and the kind of sneakers that signaled to me someone who knows their sneakers. He looked different than the angled, pixelated version of him I’d seen on Zoom. Much different. When I stood to shake his hand, I realized that he was the most handsome man I had ever seen in my life.

He guided me up to the lab, like I presume an angel would lead someone to heaven. Inside, I met the rest of the research team, a crew of youngish guys, all surprisingly cordial and unsurprisingly a bit awkward. I filled out a brief questionnaire—Which is my dominant hand? Do I play music? Can I speak any other languages?—and then they gave me a piece of stretchy green material in the shape of a swimmers cap. As I struggled to fit it over my head, stuffing my hair inside, a technician drew a bunch of dots on my face with a black marker.

“Don’t worry,” he said, I’d only need to keep the cap on for a moment while they took a scan of my head.

I sat very still in front of a computer while imaging software produced the scan; I felt the clinician-scientist watching and, in horror, pictured how unattractive I must have looked—a superficial thought that I was disappointed to have, here in this sanctum of science, but let slide.

My questionnaire completed, head scanned, and lack of claustrophobia confirmed, it was time to enter the MEG machine, which sat in a dark room separate from the lab. On the walls around it were giant stickers that looked like windows with views of outer space, making the little room feel like a starship.

“We work with a lot of kids,” one of the researchers said. Then he explained that the machine would map my cerebral activity by measuring the electrical currents in my brain.

The more I thought about it—that my thoughts and actions are powered by electrical charges, that my mind literally runs on electricity—the more anxious I became. I don’t take well to things I don’t feel capable of understanding. Like outer space. Or neuroscience. Or stuttering.

Up close to the machine, the self-satisfaction I’d felt that morning took on a darker dimension. I didn’t feel very noble anymore; I felt traitorous. Yes, here I was generously donating my data—but how would it be used? What would be its real-world application? Would my brain provide a road map for able-bodied researchers hell-bent on curing people like me? And if there ever was a cure, would I want it? Yeah, probably. But there is no cure and therefore no use in wondering.

The future research papers I’d imagined came into sharper, unnerving focus. I would be Patient 123 in the landmark XYZ study, that anonymous Samaritan whose data helped rid the world of stuttering forever. Some newspaper article about the study and its star subject would read, “She lent her brain to science so others could live a better life than she did, so that no one would ever have to stutter again.” How much worse had stuttering made my life? I didn’t know. Of course the question had crossed my mind before. But I tried not to think about it.

*

Two researchers stuck little wiry sensors to my head and handed me a pair of foam earbuds that would allow us to communicate from opposite sides of the wall. As they headed out of the MEG room and into their lab, the clinician-scientist asked me if I wanted him to take a picture. He said most participants wished they had taken a picture once the study was over.

“Of me? Like this?” I said. “I’ll pass, thank you.”

He shut the door and I was alone, lying on my cushioned cot, head snug inside the big white machine. A little monitor hung above my eyes. A voice entered my ear.

“Sophia?” It was the clinician-scientist. “Can you hear me?”

I said I could. It felt like that scene in Contact where Jodie Foster has ground control talking in her ear while she prepares to launch into outer space. What was it she says back? “I’m okay to go. I’m okay to go.”

I had to pay closer attention to the task than I’d expected. A symbol would tell you before the word appeared on-screen if you should read it out loud or not. If you were supposed to read it out loud, then you only had as long as the word was on-screen to say it; once it disappeared, you needed to stop, even if you were in the middle of speaking. Philadelphia. Photosynthesis. Sophia. I did this for about an hour and a half. After a while it became not just rote but soothing, hypnotic even. Like this one task was all I had to do in the world.

Once I got into the rhythm of it, I felt less like Jodie Foster in Contact and more like Patrick Stewart in X2. Like that part when Professor X is hooked up to Cerebro, a machine that harnesses his brain waves to connect him with all the other mutants in the world, everyone else like him—call it the greater mutant community. I thought about how many other stutterers—how many members of the greater stuttering community—had lain where I was lying, with their heads nestled where mine was now. Maybe the clinician-scientist had studied himself. I wondered how the electric currents of all our brains would compare. We all stutter in our own way; some of us speak with more blocks, others more repetitions, yet others more prolongations. But when translated into data points, would our stutters still be unique?

Data points. That’s what my stutter and I would be by the end of the day. A lifetime of anxiety and alienation compressed into—what? A number, a Greek letter, a line on a graph? I didn’t know how the technicians would measure my disfluency. In high school, I’d learned that the left hemisphere of the brain is responsible for speech, specifically a part of it called the Broca’s area—maybe they would look for a certain part of my brain to light up when I stuttered. As a kid, I remember my teacher showed our science class two contrasting sets of lungs: the nonsmoker’s, which was pink and perfect, and the smoker’s, which was black and malformed. I imagined future classrooms using the image of my brain as a similar foil, to contrast the fluent brain and the disfluent brain. To differentiate between normal and abnormal, healthy and sick, good and bad.

There is, understandably, a resistance among some stutterers to feeling pathologized. Disfluency, they say, should be seen as a variation, rather than an aberration. As a distinct “style” of speech, almost like an accent, and not a dysfunction. I worried my decision to participate indicated that I felt I ought to be pathologized. That something was wrong with me and surrendering to science was my only recourse. At the same time, I reminded myself that science is not only interested in defects—hadn’t similar studies been conducted to understand the mechanics of eye color, of hair texture, of why cilantro tastes like soap to some people and not to others? Wanting to understand difference is different from wanting to eradicate it.

I worried my decision to participate indicated that I felt I ought to be pathologized.

I assured myself that I was not here as a guinea pig—I hadn’t volunteered my brain to be altered or “improved.” No, I’d donated my brain as a resource to learn from. Taking place inside my head were processes that no one on earth fully understood. And if I was going to share something so valuable, I was glad that I could share it with the clinician-scientist, with another person who stutters, whose scientific interest in disfluency was rooted in firsthand experience. His aims were descriptive, not prescriptive—he was trying to understand the disfluent brain, not just fix it. I tensed at the thought of entrusting my brain with researchers who would be approaching disfluency from the outside; it’s one thing to wonder how stuttering works—it’s quite another to know how it feels.

I’ve written thousands of words on how stuttering feels and have published them widely. It’s important and often therapeutic work—to center the individual within an experience that is so commonly pathologized. But I also liked the idea of contributing to a body of knowledge with something other than a subjective personal narrative: cold, hard, indisputable data.

Suddenly, I reached the end of the study. The clinician-scientist appeared in my ear again. He said my data was so good that they wanted to have me do one more module. Would I be all right with that?

“Of course,” I said. But what did it even mean that my data was good? I didn’t ask.

Maybe it was because it had changed so much over the course of the task: by the last module, I was reading with near-total fluency. It was embarrassing how quickly my disfluency could vanish. How words I could barely spit out at one o’clock I could say with ease by two. At least I was of use; at least my data was not only viable but good. They queued up one last round of words.

Then it was done. The team entered the room, helped me take off all the wires that had been stuck to my face, and led me back to the lab. I asked them what exactly their research question was—I did my thesis on stuttering, I said, still trying to score points with them—and they struggled to articulate an answer that my layman’s brain would comprehend. But I got the gist: There have been lots of studies about what stutterers’ brains look like when we speak fluently but few that have captured what’s going on cerebrally at the moment of disfluency. The clinician-scientist wanted to change that. I asked when the study might come out; they exchanged uncertain looks and said they didn’t know.

Then the clinician-scientist said that the bathroom was around the corner, if I wanted to wash my face. Wash my face? Oh. I forgot I’d had those black dots drawn around my cheeks and forehead this entire time. Flustered, I went to scrub them off at the bathroom sink, and by the time I got back, the clinician-scientist gave me a handful of fifties.

“Go get yourself a nice dinner or something,” he said charmingly. I’d almost forgotten about the money. He encouraged me to tell my friends in the National Stuttering Association about the opportunity. I never did.

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