Letter from Rochester — From the September 2018 issue

Wellness Cures

Can hospitals learn to better treat Deaf patients?

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When I was nineteen, my grandmother suffered a heart attack. I sat by her side while she was slumped in her hospital bed, and watched her body, waiting for her to say something. My grandmother is Deaf—the capital D represents Deaf culture, those who use American Sign Language to communicate—and she taught me ASL when I was growing up. Signers must focus fully on one another’s bodies, as they use movements of the hands, face, and arms to convey meaning. In that moment, I drew from Deafness, studying the wrinkles of her fingers, the way her jawbone tucked back into her neck, the way her tongue moved like an oyster in the shell of her mouth. Her thin gray hair was heavy with oil and swept back from her face. Her eyes were blank and dark. It would be six days before she died, but something had already shifted. The roundness of her body, once so soft and warm, now seemed to weigh her down.

The Invisible Interpreter, by Nancy Rourke, a De’VIA artist, whose work focuses on the Deaf experience. Rourke’s artwork is on view through October in the exhibition 50 Artists, 50 Years at the Dyer Arts Center at the Rochester Institute of Technology, in Rochester, New York © The artist

Four days earlier, my grandmother had called 9-1-1 on her TTY, a device for the deaf that uses a keyboard to send En­glish text over a telephone connection. “HEART HRURT,” she typed. The ambulance came to the Deaf apartment complex where she lived and took her to the hospital, where she wrote out a list of things she needed: glasses, because her vision was her only access to language; TTY, so she could call her family; water; rosary. The TTY was delivered, but the phone line was never connected. It was two days before the hospital staff contacted us, three days before we received the message.

As I sat with my grandmother, I listened to my mother speak to the staff at the nurses’ station just outside. I couldn’t make out her sentences, but I could hear the way her voice began gentle and became firm; I caught Americans with Disabilities Act and informed consent and civil rights, legal code words that culminated in violation of federal law. Even though the ADA requires hospitals to provide effective communication for all interactions with hospital staff, my grandmother had an ASL interpreter only when the cardiologist came to see her. Even with the interpreter’s aid, my grandmother misunderstood her diagnosis. Knowing almost nothing of the seriousness of her condition, she waited for us to arrive.

Now my mother was talking with the doctor, who pulled her aside for privacy, and I could hear only his low murmur. When my mother came back into the room, my grandmother’s shallow breaths grew steady. Later, as we were leaving, the elevator doors shut, and my mother fell backward into the corner. “It just keeps happening,” she said. She was talking about Frank, Leo, Elise, Don, Rita, Harry—members of our Deaf family, each an anchor to a series of medical horrors.

My great-uncle Frank hated going to the doctor. It was only after his sister found blood-soaked pants in his laundry that he consented to seeing someone. He was diagnosed with colon cancer and spent his remaining days in a facility whose staff couldn’t remember he was Deaf. They dropped off his meals without giving visual cues to alert him, and later took them away without wondering why they remained uneaten. My great-uncle Leo had to move 1,500 miles away from his children and his home when his Alzheimer’s disease required him to have full-time care—there are only a handful of nursing homes for the Deaf in the United States. As my great-aunt Elise was dying of kidney cancer, her doctors would grab her arm and shake it to get her attention. These terrifying jolts punctuated her final days. My great-uncle Don wasn’t provided with an interpreter when he was hospitalized for a stroke. When Rita, his wife, was asked by a Department of Justice lawyer whether this was common, she said she believed it was; she, too, had been denied an interpreter at other hospitals. Rita and the lawyer did a quick survey in the Deaf community where she lived—of the ten or so people they asked, all but one had the same experience.*

* Eventually, the DOJ conducted an official investigation, which led to an agreement between the government and Beverly Hospital, in Beverly, Massachusetts, to bring the facility into compliance with the ADA by 2014.

Harry, my grandfather, was regularly hospitalized for heart problems. When I was seven, my mother and I arrived to find him with his wrists tied down—the nurses said he moved his hands too much, and they worried he would fall out of the bed. But now he was unable to communicate at all. When he saw us, he strained his arms against the straps, his eyes beseeching, his hands gagged.

Those who are Deaf see themselves as set apart not by biology but by language and culture. They identify as a linguistic minority with a different set of norms than the hearing majority. One of their unifying tenets is that deafness is not a disability—or at least it doesn’t have to be. Given social and linguistic equality, a deaf person’s lack of hearing is not a barrier to a high quality of life.

But in the context of health care, the hearing world’s ignorance of this culture can become a dangerous obstacle to a Deaf patient’s receiving proper medical treatment. Studies have shown that the deaf are less likely than the hearing to receive preventive care information from their physicians, and they demonstrate deficits of knowledge regarding sexual health, cardiovascular disease, and cancer screening. Deaf people regularly cannot read the instructions on their prescriptions, the health pamphlets handed to them by doctors, or the forms they are required to sign. In one study, nearly one third of respondents had a health-literacy rating below the ninth grade level, reporting unfamiliarity with such words as “potassium,” “jaundice,” “obesity,” and “rectal,” although 80 percent of participants held college degrees. In a study of more than 200 deaf people, more than 60 percent couldn’t list any stroke symptoms, compared with 30 percent of hearing people; only 49 percent identified chest pain or pressure as a symptom of heart attack, compared with 90 percent of respondents in a general-population survey. In a Chicago study, only 48 percent of female deaf respondents could define the term “Pap smear.” Other deaf study participants have said that doctors don’t seem to respect their motivation to be informed of, and involved in, their own care. They wonder why doctors seem preoccupied with the cause of their deafness, even when it has no apparent connection to their health complaints.

At the same time, the Deaf community is so fundamentally under-recognized that we don’t even know how many Deaf people there are. We do know that roughly ten million Americans are hard of hearing. Additionally, about one million people identify as functionally deaf. However, this data treats deafness solely as a physical ailment, and doesn’t include enough information to determine how many of those people consider themselves to be members of the minority culture. Estimates of the Deaf population and ASL users are based on data collected in the Seventies. The census does not recognize ASL as a language in survey results; whenever the language occurs in responses, it is recoded as En­glish, even though its grammatical structure is entirely different. It’s three-dimensional, for starters, tactile and spatial. In ASL, meanings can happen concurrently; a single root sign is given nuance by elements like facial expression, repetition, pacing, and movement. The hand shape for “to look” can mean leer, glance, stare, or look away, depending on how it is signed. With a second hand—a second “to look”—it can mean they see each other, or we see each other.

An intervention in health care services for the Deaf is necessary. Among non-English-speaking patients, Deaf people are at the greatest risk of being misunderstood by providers. The ADA requires language accommodation in medical settings, and according to a survey of 221 hospitals in 2008, ASL was the second-most-requested language, accounting for 41 percent of requests. Still, Deaf patients regularly report difficulty securing interpreting services. Clinicians rely on written or spoken En­glish, even though studies consistently show that the deaf population has considerably lower English literacy rates than the hearing community—the average deaf high school senior reads between the third and fourth grade levels. For those who lip-read, only between 30 and 45 percent of En­glish sounds can be read unambiguously.

The Deaf regularly move through the medical system without agency or dignity—not because they cannot hear but because they are not given the opportunity to communicate. The onus for change is put on the Deaf themselves, often in terms of changing their own bodies to accommodate the hearing majority. What if, instead, the Deaf were consulted about what changes they would like, or how they would like for them to happen? What if they were invited to take part in shaping the next generation of doctors?

The University of Rochester School of Medicine and Dentistry is working to do just this. The school is located in Rochester, New York, a city of 210,000 on Lake Ontario that has one of the highest concentrations of deaf people in the country. Through a daylong workshop held every fall, the school gives first-year medical students the opportunity to diagnose not the Deaf but themselves, to begin to face their own cultural illiteracy. The event is called Deaf Strong Hospital and has been held every year since 1998. It is now run by the University’s National Center for Deaf Health Research.

Last fall, in the atrium of a research building on Rochester’s campus, the medical students sat in rows, waiting for their names to be called. It was September, with autumn in the air, and the women were wearing tall boots and skinny jeans, the men khakis and tidy plaids. Two middle-aged signers were finger-spelling at the front of the group: D-E-A-N-N-A? A-L-E-X? The hearing people had been given the ASL alphabet ahead of time, to learn what their names looked like. But after just a few minutes their attention wandered, and they began to miss their names. They looked around the angular, high-ceilinged room, which had been divided up to create waiting areas, a general practitioner’s office, an ER, a pharmacy, and a psychiatrist’s office. For them the room was oddly quiet. But for the signers it was as noisy as a crowded coffee shop, language coming from all quarters, every mouth shape or eyebrow shift heavy with meaning. Though the hearing people outnumbered the Deaf, the latter dominated the space. They breezed among the stations, laughed big, quiet laughter, signed across the roomto one another. Some of the hearing people focused on these signers, mesmerized, instead of waiting for their names.

The workshop is organized into three parts: a simulation of a medical visit, a lecture on Deaf culture, and, at the end, a debriefing in small groups led by one hearing person and one Deaf person. The simulation is the crux of the experience. In it, a hospital’s usual power structure is reversed: Deaf community members act as doctors and nurses, and the hearing students act as patients seeking care. One stipulation of the workshop, suggested by the Deaf participants, is that the students surrender the authority conferred by their white coats and dress casually for the day.

The student-patients had each been given one of two tasks: those assigned yellow cards would go to the pharmacy for routine prescription refills; those assigned blue cards were ill and had an appointment with their general practitioner. Members of the blue group had various complaints: headache, fever, loss of appetite, difficulty concentrating, a stiff neck.

At the station representing the general practitioner’s office, Tiffany Panko sat sternly at a table. A recent graduate of Rochester’s medical school, Panko is probably the first deaf person to complete the program using ASL in her classes. She is now a postdoctoral fellow focusing on deaf women’s health. Before the simulation began, she was laughing and signing with the other Deaf actors, her perfectly shaped eyebrows sliding up and down in the grammar-dance of question and response. But when a student was led from the waiting area to the seat across from her, Panko’s demeanor turned serious.

“You seem confused,” she signed.

Her patient looked at her with a tense smile and offered a strained laugh. Her shoulders were hunched and her neck was compressed with tension. There was no interpreter to help her.

“You don’t seem to understand,” Panko signed. She was not exactly cold, but she was closed-off. “Can you draw a clock for me?” she asked, attempting to establish baseline communication—an extra step for the students’ benefit, one that is not usually extended to a Deaf patient. She nudged a pad of paper across the table. Her patient looked at it and then back at Panko. “A clock,” said Panko, describing a disk with her thumbs and index fingers. She tried a different approach, describing the disk on her wrist, “a watch.” The patient still looked confused. Panko placed the disk back in the air, gesturing toward the far wall, showing where the phantom sign might live. “A clock.”

Finally the patient’s eyes awakened in recognition, and she drew a clock.

“Good,” said Panko, though this most basic information had taken minutes to get across. They hadn’t even begun to communicate more abstract ideas of illness or diagnosis.

At the end of the appointment, the GPs handed each patient a card explaining their conclusions and directing them to the next station. Patients who had symptoms of meningitis but were nervous communicators were instead diagnosed with anxiety; others had their prescriptions withheld because of a miscommunication with their pharmacist and ended up in the emergency room as their symptoms worsened. Everyone had been asked to sign an informed-consent form written in sixth-grade-level Japanese and Albanian. They were given the option to choose their language, even though few, if any, could read either. On the back of the form, the students learned that the average consent form is written in eighteenth-grade-level En­glish, well beyond the literacy of the average American, let alone the average Deaf American. It is important to note that though Deaf literacy rates may be low, this has little to nothing to do with intelligence—the Deaf have limited access to En­glish, and their ASL may be considerably more advanced than their fluency in written En­glish.

The hearing students’ confusion as they struggled to communicate was visible, and their doctors read the confusion as an additional symptom. Some of them received a card that read:

Your doctor believes that you might be suffering from an unspecified mental illness and has referred you to a psychiatrist. Even though you disagree with your doctor, you proceed to visit the psychiatrist.

The students, in short, were learning about the myriad ways communication barriers could affect quality of care. But even when communication was restored, prejudices remained.

In the atrium, a batch of students arrived at the psychiatrist’s office, the one station where interpreters were available. One student sat across from Sophie Bleiweiss, playing a psychiatrist for the day, who had powder-white hair and boundless energy. This patient had some basic knowledge of ASL—it was clear by her demeanor—but couldn’t communicate with ease. She finished finger-spelling her name and her eyes, steady, receptive, respectful, rested on Bleiweiss’s. Bleiweiss gave a quick nod and shot her hands up in the air: “Interpreter!” she called, and suddenly one was kneeling beside them.

Culturally Deaf, by Nancy Rourke.

At first, this patient was timid with her interpreter but she slowly began to tell her story. She had been trying to get a refill of her antidepressants. She had started at the pharmacy, which refused to refill the prescription because of a miscommunication about side effects. Without her prescription, her symptoms worsened. She went to the emergency room doctor, who sent her to her general practitioner, who sent her to the psychiatrist. Now she had begun to wonder whether something really was wrong with her—why else would she be sent so many places for something so simple? She leaned in, worry on her face. “I don’t know if they know why I’m sick,” she confided to Bleiweiss.

For most students at this stage of the simulation, having an interpreter brought enormous relief. Students were no longer agitated or confused, and they sat up a little straighter. But while interpretation was a welcome assist, it couldn’t fix the damage that had already been done. Even though students could now communicate anything they wished, none that I saw suggested that any of their doctors might have been wrong; none fought back the way they might have before the simulation began. Instead, their voices were quiet and shaky as they gave short, direct answers.

Bleiweiss played her part perfectly—following her script, she was alternately harsh and warm, kind and condescending. She advised the young woman on her prescription, then looked at her with pity. “I just want to extend my condolences to you that you’re hearing,” she said. With that, the patient’s sense of ease vanished; she might have had an interpreter, but there was still no real dignity. She deflated ever so slightly, as though Bleiweiss had delivered a punch to her gut.

In the moments after, the alternate reality lingered. The student, Shireen Saxena, was still uneasy about the way Bleiweiss had spoken about her disability. “This is just the way I am,” she told me. “I just . . . hear.”

As the groups switched—those in the simulation headed to the lecture, and those in the lecture to the simulation—Ian DeAndrea-Lazarus stood in front of the auditorium, chatting with stragglers. DeAndrea-Lazarus, a student in the school’s combined MD/PhD program, was normally a classmate of the students taking their seats in the hall, but today he was their teacher. Impeccably dressed in a light-blue oxford shirt, a pink tie with a gold clip, and navy pants, he looked sharp but approachable. “Imagine if everyone in this room knew ASL,” he signed. ­An interpreter, out of sight of most of the students, gave voice to his hands. “We could all communicate with one another, and no one would know who was deaf and who was hearing. . . . Everyone would forget that I’m the deaf guy in the room.”

With his signs interpreted into En­glish, everyone already seemed to have forgotten that ­DeAndrea-Lazarus was the deaf guy in the room. He began by explaining some of the values of his culture and then focused the group’s attention on the power of his language, as he explained a myocardial infarction to a fictional patient. He tapped his middle finger on his chest in the sign for heart, and then plucked the heart out, holding it in his cupped palm in front of him and slightly to the left. He could let go of it now and it would still be there. If he pointed at it later, that empty space beside him, that meant the heart. He didn’t need a special word for artery. He just pointed to its location within the heart, then created a cylinder with his thumbs and index fingers. Essentially what he was saying was, “This is the heart-tube.”

Students who were taking notes before were now only looking at ­DeAndrea-Lazarus, his heart, his artery hanging in the air.

He went back to the heart held in space. Now it was beating—he squeezed his cupped fingers together a centimeter and then separated them back out again; squeezed, back. A normal heart: beat, beat, beat. Back to the heart-tube. He held the shape of the tube with one hand, and the other hand acted as the blood, moving easily through with each heartbeat.

He plucked a new heart from his chest, and placed it to the right of the first one. This other heart? The blood flow was halted. Only a very small amount was getting through.

Healthy heart: blood flow, blood flow, blood flow. Beat, beat, beat.

Your heart: blocked.

DeAndrea-Lazarus held a hall of hearing medical students captivated, watching his hands, his face, his fingers.

DeAndrea-Lazarus’s Deafness meant he had unique strengths as a medical student. It was easy to imagine him as an asset in a lecture hall, or a hospital room, yet Deaf medical students are rare. A study of eighty-nine medical schools found only thirty-four self-identified deaf or hard-of-hearing students in MD-granting programs in the United States between 2014 and 2016. There are a lot of reasons for this, but the most blatant is that technical standards at many medical schools require candidates to be able to hear, allowing for active discrimination against deaf students.

But DeAndrea-Lazarus believes his Deafness will make him a better doctor. His use of a visual and physical language means he has greater visual acuity and dexterity; he also has a better read on a patient’s body language; and he knows from life experience the importance of clear communication. DeAndrea-Lazarus doesn’t have to learn that communication is more important than hearing; this value is baked into his culture. He doesn’t waste any time with the ear. His work, like his culture, pivots toward the visual.

The day before Deaf Strong Hospital, in the corner of a common room, he showed me an app he’s been developing. It pairs with an augmented-reality device called the Microsoft HoloLens, a bulky visor that immerses the wearer in mixed reality, allowing him or her to interact with holograms projected onto the actual environment. DeAndrea-Lazarus’s app translates spoken English into text-based captions that he can read in real time. He can place the captions anywhere in his field of vision. In the classroom, this allows him to view his professor’s words beneath her face. Or the captions might be positioned to the right, moving with him as he moves his head. Even when he looks away from the speaker, he still sees the words.

For those deaf people who can speak and read English, this could be revolutionary. “People could wear it everywhere they go,” says DeAndrea-Lazarus, “and talk with anyone at any time.” This would require advances in speech-recognition technology, and probably a sleeker visor, but it’s a stunning idea nonetheless.

DeAndrea-Lazarus’s long-term goal is to develop technology similar to that of brain-controlled prosthetic limbs, to create a sort of translation machine for ASL. For now, he’s using his PhD to gain foundational knowledge, studying what makes deaf brains different from hearing brains—for example, he’s studying how ASL forms the brain differently, or why peripheral vision is greater in deaf people. His work reinforces the idea that the problems Deaf people face are not about hearing but about communication.

DeAndrea-Lazarus lifted the visor out of its box and rested it on his head. Like a modern-day Geordi La Forge, he sat up straight and began to pinch the empty air with mysterious precision, manipulating holograms to set up his app. When he caught me staring at him, he smiled. “My wife’s always looking at me like . . . ” He paused, laughed, pinched the air. “She tells me I look stupid.”

Once his app was ready, DeAndrea-Lazarus slipped the visor over my head. His eyes, big and brown and busy, focused in on me, seeming to talk a mile a minute even when his hands were still. As I began to talk, the machine picked up my voice and displayed a scroll of my words at the bottom of my field of vision—stopping me speechless. “Is it accurate?” he asked as his words, voiced by his interpreter, hovered brightly under his face. I nodded.

With Deaf people working on solutions, DeAndrea-Lazarus told me, there are ways to preserve Deafness while overcoming communication barriers. “We want to keep our culture,” he said. “We want to keep our language.”

The most obvious lesson of Deaf Strong Hospital is that non-signing doctors and signing Deaf patients need interpreters in order to communicate ethically. This is what the students see and experience most vividly. The subtler lesson is that Deaf people aren’t broken, but the medical system has the potential to break them. As the students move through the simulation, they are the ones tragically disempowered, and it has nothing to do with their bodies. All that has changed is their access to language. The beginning of the solution is as simple as providing language access to Deaf people, but the medical community’s view is stubbornly stuck on the ear.

Oralism Backlash, by Nancy Rourke © The artist

Since at least the 1850s, the Deaf have expressed the idea that linguistic and cultural autonomy was their road to healing and liberation. For the past 150 years, the Deaf have held fast to this tenet. Language was all the cure they needed—a language developed by Deaf people, not reliant on hearing, and a culture whose values support a view of the world geared toward the visual and tactile. With this language and culture, the Deaf find commu­nity, information access, literacy, and op­portunity.

But for the most part, the hearing gaze still misses this.

In Staring: How We Look, the disability theorist Rosemarie Garland-Thomson differentiates between types of looking, describing the unethical stare as “looking without recognizing, a separated stare that refuses to move toward one’s fellow human.” This is, in many ways, in line with strictly medical models of deafness, in which it is the equivalent of an injury. If the Deaf are seen only as their biological difference, then doctors will continue practices that bring them harm, never diagnosing themselves with the prejudice that is the root of the problem.

Critics of deaf-for-a-day-style activities argue that they are a form of minstrelsy, inviting the hearing gaze without complicating what it perceives and swinging the door wide open for mockery. But by the time of the Deaf Strong Hospital debrief sessions, it was clear something else had happened with these students. Malcolm Mezue, his face full of bewilderment and awe, said that the simulation was like being in another country. But the students also reported feeling the things so many Deaf people say they feel regularly in health care: like they were helpless, subjects of pity, tossed into a situation in which they had no control, that their initial instinct was to be passive, that they couldn’t communicate with the same sophistication as they could think.

Garland-Thomson argues that political equality begins when an encounter is sustained: “Being seen by another person is key to our psychological well-being . . . as well as our civil recognition.” This isn’t merely visual; it has to do with moving closer, with using observation as a road to understanding. To use a word suggested by Garland-Thomson, the ethical stare is a beholding. This is what Deaf Strong Hospital invites students to do: behold. It invites them to look closer and to revisit their ideas of Deafness. And on some level, this had worked, at least for some of these students. They had noticed many of the things they were meant to notice, and asked a series of thoughtful questions. When DeAndrea-Lazarus prompted them to take out their informed-consent forms, they looked worried.

“Did anyone understand what the form said?” DeAndrea-Lazarus asked.

There was a general rustling, a chorus of murmured noes, and then Blythe Fiscella nervously asked, “Did we give our lives away?”

DeAndrea-Lazarus, not missing a beat, raised his eyebrows and said, “You gave something away.”

Everyone laughed. For them it was merely a kidney, but it could have been much more. I laughed, too, though it was hard not to feel a familiar lump in my throat.

When my grandmother lay dying, nurses came in with a form they wanted her to sign. Her eyes grew wide with panic as she scanned the page, her index finger springing up by her temple as she shook her head. “I don’t understand,” she said to herself. Then her eyes met mine. She signed it again: the single hand motion for “understand,” her index finger curled and springing up, and then her whole face negating the verb, her mouth downturned and slightly agape, her eyebrows pinched up in fear, her eyes glazed over with tears, her head shaking back and forth so slightly it was almost imperceptible. She said it again and again: “I don’t understand. I don’t understand.”

Deaf Strong Hospital is a beacon, but the larger landscape still feels mostly untouched. I thought about how I tried to educate those nurses in that moment. I thought about all the times my family members had educated individual doctors and nurses, mustering patience during the most desperate moments. But then there would be a shift change and there would be a whole new group. There were so many of them, so few of us.

The number of students felt small, too. Could it be enough? One hundred doctors at a time, a single day in their education, a single Deaf student in their midst? I felt certain that many of these students had come closer to seeing Deafness, but there was still so much to do. What if this event happened at every school, for every incoming class—would that be enough? I still couldn’t tell.

As the debrief group broke up, several students waited to talk with DeAndrea-Lazarus. The rest gathered up their informed-consent forms and notes from their doctors. They laughed and joked with one another, thanked DeAndrea-­Lazarus, and filed out until he was the only student left in the room. He stood with his back to the whiteboard, looking out at those empty chairs. He looked exhausted and proud.

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is a John W. Kluge fellow at the Library of Congress. Her first book, The Illusion of Miracles, is forthcoming from Simon and Schuster.

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