American Sign Language, ASL, Deaf community, Deborah Gilboa, doctor, family health, hearing impaired, parenting, Pittsburgh, Pittsburgh Schweitzer Fellows Program, Squirrel Hill Health Center, University of Pittsburgh School of Medicine
As a 1998-1999 Pittsburgh Schweitzer Fellow and a student at the University of Pittsburgh School of Medicine, Deborah Gilboa (then Goldberg) worked to extend health care education and access to Pittsburgh’s Deaf community.
Now, as a Fellow for Life, a family physician at Squirrel Hill Health Center, and a clinical assistant professor at the University of Pittsburgh School of Medicine, Gilboa’s hands-on commitment to empowering vulnerable communities continues. She was recently named one of Pittsburgh Magazine’s “40 Under 40” for making a positive impact on the development of the Pittsburgh region—and she chronicles her work in family health (and her adventures parenting four young boys) on her recently-launched website, www.deborahgilboamd.com, as well as on Facebook and Twitter.
Read on to learn more about Gilboa’s journey of service.
Why did you decide to develop your particular project?
My undergraduate education was in theatre, and one of my first jobs after school was with the Deaf West Theatre Company. In our performance of One Flew Over the Cuckoo’s Nest, the executive director decided to portray all the patients as Deaf and all the staff at the mental institution where it takes place as hearing, further widening the void between the two groups. Considerable rehearsal time was spent examining the divide between the experiences of the four hearing actors with doctors and the lifelong frustrations of Deaf individuals who tried to get medical care. At this time, the thought of medical school had not occurred to me; however, I was dismayed at the disparity in care that existed between two groups of people.
My interest in Deaf culture and American Sign Language (ASL) persisted as I spent the next several years traveling the country for my theatrical work. Each place I went I found a Deaf person to teach me some ASL (I often traded theater tickets for lessons). Once I decided to attend medical school, many Deaf individuals told me the story of their own mostly nonexistent medical care. By the time I entered med school, having finished an unofficial post-baccalaureate course at University of Pittsburgh to meet the requirements, I was also a trained, fluent ASL interpreter.
In my first two years of medical school I interpreted for over 200 Deaf clients in hospitals, ERs and doctors’ offices. Over and over, I realized how low the expectations were for good communication, especially on the part of patients. Further I was struck by the medical illiteracy of many Deaf patients, as I witnessed their surprise that smoking was harmful, seatbelts helpful, obesity dangerous.
My Schweitzer project was two-fold. I offered a menu of health classes to all the Deaf organizations in Pittsburgh: Substance Use, Sexual Health, and Good Nutrition. At the end of each session, I gave new participants an opportunity to take a survey in ASL about their experiences with the medical field since the passage of the Americans with Disabilities Act, and their expectations for the future.
What was the lasting impact of your project on the community it served?
Several of the organizations that invited me to speak continue to offer health information workshops for their members and clients to this day. The idea that basic knowledge about wellness and safety should be offered to adults in the Deaf and hard-of-hearing community was not new, but clearly gained more attention and traction due to this project.
The research piece was complicated by the need to perform a survey in a language that can’t be written—but it definitely opened lines of communication. Since that time, other medical students from University of Pittsburgh have taken motivation from some of the results and prepared and distributed information to physicians about the need for, and logistics of using, interpreters in the ASL-using community.
The organizations around Pittsburgh that serve the Deaf are very receptive to partnering with physicians to improve the healthcare of their consumers. Our mobile unit currently goes to two different sites that serve Deaf individuals who are mentally ill and/or mentally retarded. At each of these sites the case managers (Deaf and hearing) work to raise awareness of health-related lifestyle issues among their clients.
What do you think is the most pressing health-related issue of our time, and how do you think it should be addressed?
People talk often, and rightly, about the disparities in health care in America and around the world. I think the biggest disparity is in expectations. Since the Tuskegee experiments, and probably earlier, there have been groups of people in this country who expect to get the short end of the stick when it comes to medical care. This leads to the myriad problems that are the results of learned helplessness, and worsens health outcomes for many individuals. As this survey demonstrated, people who do not expect good communication or respect from a doctor stop seeking medical care altogether, even when they believe that something serious is wrong.
Globally, if we could improve knowledge sufficiently, we could raise the expectations of all, even those in poverty. If mothers know that cleaner water saves lives, they will move mountains to get there for their children’s sake. If people can raise the expectations of their policy-makers to agree that each person has a right to immunizations, fund allocation will change.
Lastly, if we can change the expectation of prolonging life only for the sake of longevity, we could save money on futile end-of-life care that could be used to raise the bar for everyone.
What was the most surprising element of your experience as a Schweitzer Fellow?
I was overwhelmed by the welcome I got from this underserved and fairly insular community. My ASL is clearly that of a hearing person—like any language learned as an adult, there will always be an “accent” and miscommunications—but I received only help and encouragement. The lesson my mentors reinforced was that asking questions, rather than making assumptions, opens hearts and doors.
What does being a Schweitzer Fellow for Life mean to you?
The ability of one person to ask new questions and shed new light cannot be underestimated. As I teach and mentor medical school, and as I raise my four sons, this is the lesson I feel compelled to pass on. To be a Fellow for Life means never turning my back on the problems exposed by that light, and to partner with the underserved to find good solutions.
Deborah Gilboa, MD is a Schweitzer Fellow for Life in Pittsburgh, PA. Click here to read more about the Pittsburgh Schweitzer Fellows Program and the Fellows like Gilboa it supports in creating and carrying out yearlong direct service projects.
Each week, Beyond Boulders delivers a new installment of “Five Questions for a Fellow” – an interview series with Schweitzer Fellows and Fellows for Life (program alumni) across the country and in Gabon, Africa who are leading the movement to eliminate health disparities. For an archive of previous “Five Questions for a Fellow” interviews, click here.