What Medicine Can Learn From Doctors And Researchers With Disabilities

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Bonnielin Swenor has devoted her life to studying visual impairment in older adults. But for a long time, she didn't often discuss the motivation fueling her work — that she herself has low vision.

Swenor, an assistant professor of ophthalmology at the Wilmer Eye Institute at Johns Hopkins University, has myopic macular degeneration, a condition that leaves her with extremely limited vision. Basic tasks exhaust her visual processing power, so she has to manage her time with precision. This hasn't stopped her from having a prolific career as a researcher and epidemiologist. But until recently, she rarely discussed her disability with her peers; she worried that they would judge or dismiss her.

Then one day, during the course of a study Swenor was conducting, something happened. "A patient said to me, 'If you can't talk about your disability as a researcher at the Wilmer Eye Institute, then why should I?' " she remembers. She has thought about this every day since. "If people in scientific and medical professions can't be open about this, what kind of message are we sending to our patients?"

Bit by bit, Swenor started talking about her disability — and found she had a lot to say. This year she has published several articles in high-profile journals, including JAMA and the New England Journal of Medicine, sharing her experiences with disability and urging institutions to include more doctors and scientists with disabilities in their ranks.

"The exclusion of people with disabilities from the biomedical workforce undermines the goal of achieving true diversity and is a missed opportunity for science and medicine," she wrote in the New England Journal of Medicine at the end of May. The life experiences of doctors and researchers with disabilities, she wrote, can help them treat patients and ask research questions that others miss.

Swenor is pushing for medical institutions to collect more data on individuals with disabilities in their workforces, invite people with disabilities to speak at seminars, and place faculty members with disabilities in leadership roles so they can help shape conditions and policies.

NPR spoke to Swenor about the importance of representation, the challenges she faces as a researcher with limited vision and the surprising upsides to having a disability in science.

This interview has been edited for clarity and length.

How does your disability affect your daily life?

[It affects] every aspect of it: How I raise my kids, how I do my job, how I interact with other people. It has a huge impact on things like reading. I don't drive anymore. I can power through and do a lot of tasks with the vision I have. But I get to a point where it doesn't make sense [to work] anymore. I only have so much good vision in any given day, and I have to conserve that resource. Literally everything I do throughout the day is focused on conserving that resource, [even] how I organize the milk in the refrigerator in my house — I can't waste visual resources on looking for milk. When I get home I have no vision left; I can't read a recipe.

How has your disability made you better at your work as an ophthalmology researcher?

I think it really surprises people when I say that I've gained more than I've lost. And what I mean by that is, I have a focus, a purpose in my life that is unwavering. I've come to realize how rare that can be in life. My motivation in my life is my personal life, and that's renewing and constant.

Since I've become more public about my disability, people have sought me out. I've realized it's a privileged perspective. Being a patient and also a researcher, you straddle two worlds. You see opportunity and innovation in ways others can't. I come to the table with a very different set of research questions [than others]. That's really what I want people to understand. To be sure, there are lots of challenges in disability, but in many instances our perspective is so valuable. Just like any other marginalized group, you bring to the table your life experience, your vantage point. It's at those points of difference that we can find innovation, we can make change, push forward science, and that's what we bring.

Do you know doctors who have feared to disclose their status as disabled?

Oh, yeah. I've had literally dozens of doctors from around the country contact me, a number of which have said, "Thank you so much for talking about your disability. I don't know if I'm in a space where I can talk about mine publicly because of the stigma; I'm afraid I'll lose my patient population, x y or z." That is a very real fear.

I hid my disability for a long time. Throughout graduate school I didn't talk about it very openly. It took me a long time to get to a space where I felt comfortable. And I'm in an extremely supportive ophthalmology department, where people devote their lives to taking care of people like me. And I was afraid! I was afraid people would see my disability and not my ability. I was afraid people wouldn't want to work with me. I was afraid I wasn't going to be able to do my job.

Have you felt stigmatized since "coming out" as having a disability?

I have had people say to my face that they don't trust my research, because how can I see my data? I've had individuals say, nobody wants physicians with a disability. They want physicians who appear healthy; they don't want someone who appears weak or sick. And that's crazy — that's not OK.

Why do you care so much about disability representation in medicine and science?

Disability is the group that anyone can fall in and out of. It's the most ignored and underrepresented group, yet it's the only group that anyone can become a part of at any moment, for any number of reasons. What I've found through my experience trying to make change is, we're not even part of the conversation around diversity in science and medicine. We're not at the table. That's what we're trying to change.

And we are there [at medical and research institutions]. Statistics show there's someone with a disability on probably every institution's faculty. But we are the most understudied group. Most agencies and institutions aren't even measuring how many people have disabilities, at least at the faculty level.

We need to survey this population to highlight needs. Maybe we identify that we have greater representation of persons with certain types of disabilities. We can recognize that we're not doing such a good job for individuals with all kinds of disabilities.

What's giving you hope for the future of disability representation in science and medicine right now?

A number of researchers, including deaf and hard-of-hearing individuals and individuals with other types [of disabilities], have created an [informal] research group. It's an amazing group of people who are trying to rally the troops and push forward. I think this represents a seismic shift — we have been in our silos with [our] disabilities. We are getting louder, starting to reach out to each other.

Another thing is the #DocsWithDisabilities movement on Twitter that my colleague Lisa Meeks started. The stories and comments have pushed me to keep this momentum going even when I have had hard days.

Susie Neilson is an intern on NPR's Science Desk. Follow her on Twitter @susieneilson or email her at sneilson@npr.org.