Tuning in to deaf needs

It’s a team sport, but indoor polo doesn’t take much talking—which helped make it an instant fit for Peter Hauser. During his freshman year of college, a few horse hours were a weekly routine: polo three times a week, together with training ponies or coaching local students in the sport. But Hauser had a stronger motivation than his love of the game: The horses didn’t expect him to hear them.

At the age of 5, a bout of spinal meningitis left Hauser completely deaf. While in middle school, he attempted to use cochlear implants—considered an experimental treatment at the time—but the prosthetics proved ineffective. The procedures and monitoring nonetheless had an upside: They provided his earliest experiences working with researchers, which helped him become interested in pursuing science himself.

Hauser had a longstanding interest in human psychology. As a deaf student, however, he didn’t think he could work with people as research subjects, so he chose to major in animal sciences instead. But when his advanced courses proved challenging, he began taking evening sign language classes at a community college so that he could use an interpreter to keep up—he had relied on lip-reading up to that point—and the decision was life-changing.

Learning to sign gave him the means to connect with people. He switched majors and went on to earn his Ph.D. in clinical psychology at Gallaudet University in Washington, D.C., the only institution at the time that offered training in sign language linguistics and the study of deaf individuals. Now a professor at the National Technical Institute for the Deaf (NTID) at Rochester Institute of Technology (RIT) in New York, he studies various aspects of how learning sign language influences cognitive function differently than learning spoken language does.

Hauser also leads the Rochester Bridges to the Doctorate program at RIT, which prepares deaf and hard-of-hearing individuals for doctoral degrees in the biomedical sciences. Having experienced firsthand the challenges that such students face, Hauser’s aim is to provide training and support for these students so that they can transition smoothly into the careers they want. “I don’t want others to go through what I experienced [when entering academia],” he says.

Unheard-of obstacles

Grad school can be tough on anyone, with its challenges of finding the right mentor, developing a research project, and building career skills, to name just a few. For deaf students, many of these challenges are amplified. Identifying a supportive mentor and establishing a professional network can be particularly tough, Hauser notes. “Part of the reason there aren’t many deaf scientists or deaf individuals in science is that they don’t have a role model growing up to help them see that they can actually go in and work in these fields,” he says. And networking, which is already uncomfortable for many early-career scientists, poses added barriers to students who must rely on an interpreter to participate in a casual conversation. “Consider a deaf student who might want to try studying toxicology, for example,” Hauser says. “If there’s no one in that field who has experience working with deaf individuals, that student’s success relies on being able to find a hearing individual who is a good ally, already has a good network and contacts, and can mentor the student along with an interpreter.”

Hauser was able to find supportive mentors who contributed to his success, but most of them were hearing individuals, so he was on his own to navigate the additional challenges of being a deaf researcher, including discrimination. “They were strong allies and advocates, but they hadn’t shared my experiences,” he says. For example, he recalls companies returning his registration fees for training workshops when they found out he was deaf because they felt they wouldn’t be able to accommodate his needs, and job interviews being canceled when he requested interpreting services. Today, instances of discrimination and barriers persist, Hauser notes, particularly when attending scientific conferences. “I have gotten some very strange comments,” he says. “People say things like ‘this stuff is very complicated and too difficult to translate into sign language.’”

Even in a supportive environment where accommodations like interpreters are provided, being a deaf researcher among mostly hearing colleagues can be isolating, as Bridges student Sara Blick has experienced. Blick fell in love with chemistry in high school, and as an undergraduate she did a summer research internship at a small company. She was comfortable lip-reading and writing back and forth to communicate, but at weekly group meetings, she struggled to follow conversations and eventually relied on a summary from her boss in lieu of attending.

Now she works with associate professor Patricia J. Simpson-Haidaris of the University of Rochester Medical Center in New York, one of the many mentors affiliated with the Bridges program. Simpson-Haidaris is familiar with deaf culture and sign language, and the two also employ text messages and writing back and forth to communicate on a daily basis. In addition, Blick relies on an interpreter a few times each month to help her have more in-depth conversations with Simpson-Haidaris.

But in Blick’s experiences working in labs with mostly hearing researchers, she finds it tough to follow casual conversations as people talk while performing experiments. “I feel a bit frustrated that I can’t participate in those conversations to share my thoughts or learn what they know,” she says. “I struggle with showing my personality and having conversations—but it’s hard to do that while also being able to work. It would be nice to have a 24/7 personal interpreter for all of that interaction, but it can’t be done.”

She also struggles with finding deaf colleagues. “I would love to meet a deaf researcher who is studying cancer or infectious diseases,” she adds, “but I unfortunately don’t know of any.” 

Similarly, most deaf graduate students are the only ones in their class, which makes interacting with peers to form social relationships difficult, says Marie Coppola, an assistant professor of psychology at the University of Connecticut, Storrs. Coppola is a hearing professor who has advised Bridges graduates. “When I was a graduate student, I certainly learned easily as much from my peers as I did from my professors,” she says. “That part of [deaf students’] training is lessened, but also just the camaraderie and social support that’s really necessary for graduate students to succeed is not as available to them.”

Bridging the gap

These issues are among those Hauser aims to address with the Rochester Bridges to the Doctorate program, which is supported by a grant from the National Institute of General Medical Sciences. The program, which began taking students in 2013 and currently admits three trainees each year, is open to those who have been accepted at RIT for a Master of Science degree. In addition to offering traditional scientific training and a sense of camaraderie and community, the program includes weekly professional development seminars that cover topics such as working with interpreters and networking at scientific conferences as a deaf person. Hauser also often invites working deaf researchers to give talks so that students can learn from their experiences.

In the fall, Bridges student Jessica Contreras plans to start a Ph.D. program in psychological sciences at the University of Connecticut, where she’ll study how using sign language impacts the way children mentally represent numbers. Her future mentor, Coppola, has firsthand experience of the challenges that lie ahead: She was the adviser to Erica Israel, a graduate student who took a leave of absence from her doctoral program because of access issues. The university, like most institutions, was well equipped to handle the needs of deaf undergraduate students—but not those at the graduate level, Coppola says. After Israel’s experience, Coppola, Hauser, and Contreras are trying to ensure they have the resources needed for Contreras to succeed.

Not all deaf students want or need the same degree of accommodations, so it’s critical for each student to recognize their own needs early on and to negotiate with their institutions, Coppola says. While some students might choose to request an interpreter for a few hours each week, for example, others might prefer to have someone for all their coursework and research. Contreras has requested note takers and real-time captioning services for classes and a sign language interpreter who will remain with her for the duration of her degree.

But just making the request doesn’t necessarily mean that it will be granted, explains Mark Leddy, a program director in the Directorate for Education and Human Resources at the National Science Foundation. The Americans with Disabilities Act requires institutions to provide such accommodations, but it also states that this requirement can’t place an undue financial burden on institutions. So, Leddy says, “if the interpreting or captioning services prove extremely costly, then a university may decide to only provide what they believe is required by law,” even though “for some students that might feel insufficient.”

In Contreras’s case, because she is a student, the university’s Center for Students with Disabilities will pay for the accommodations she has requested. Coppola’s department pays for interpreting services for her deaf lab members who aren’t students. But this arrangement is less than ideal, Coppola notes, because “it’s a disincentive for departments to hire deaf people. … If they are a department that’s relatively well off it’s possible, but smaller departments can really struggle.”

Coppola sees a problem with this system. “This does not seem like something that should be left to individual departments or units,” she says. “Departments aren’t responsible for providing wheelchair ramps to all our buildings. I see this as an analogous situation.”

Even when universities are willing to foot the bill, interpreters can be tough to find. Few are trained to specialize in various technical disciplines, and many scientists work with their interpreters to create their own signs for their specific research area. As a result, an interpreter trained with one researcher may find it difficult to work with another, who might have developed different signs for the same terms.

Institutions such as Gallaudet University or NTID minimize many of these barriers. Students at such schools have a strong sense of community and support from several hundred deaf peers, along with easy access to interpreters and captioning services. But those attending mainstream graduate schools may feel the lack of such accommodations and must be prepared to advocate for themselves to get the support they need, Leddy says.

By taking some of these challenges head-on, Hauser aims to expand the number and kinds of institutions—and fields of study—where deaf scientists can feel at home. In addition to the Rochester Bridges to the Doctorate program, Hauser spends much of his time preparing interpreters to meet the growing needs of his students. He’s also expanding his efforts to deaf postdoctoral training at RIT, and a “mentoring the mentor” program at the University of Rochester that helps equip professors to work with deaf students.

The activities leave him little time for his own research these days—and even less for horses. He hasn’t played polo since his sophomore year of college, but he doesn’t mind. For now, he’s more interested in widening the scientific playing field for other deaf scientists.

Interviews with Hauser, Blick, and Contreras were conducted via Skype with interpreting assistance from Nikki Cherry, program coordinator and interpreter for the Rochester Bridges to the Doctorate program.

This article has been updated to reflect that Erica Israel was not a participant in the Rochester Bridges to the Doctorate program.

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