How doctors and researchers with disabilities change medicine: shots

Bonnielin Swenor has dedicated her life to studying visual impairment in the elderly. But for a long time, she did not often discuss the motivation that fueled her work – that she herself had a low vision.

Swenor, an assistant professor of ophthalmology at the Wilmer Eye Institute at Johns Hopkins University, suffers from myopic macular degeneration, a condition that leaves her with extremely limited vision. Basic tasks exhaust the power of visual processing. She must therefore manage her time accurately. This did not prevent her from having a prolific career as a researcher and epidemiologist. But until recently, she rarely spoke of her disability with her peers. she feared that they would judge her or return her.

Then one day, during a study that Swenor was conducting, something happened. "One patient said to me, 'If you can not talk about your disability as a researcher at the Wilmer Eye Institute, then why should I?' "she recalls. She thought about it every day. "If scientific and medical professionals can not be open about this, what kind of message are we sending to our patients?"

Gradually, Swenor began talking about her disability – and discovered that she had a lot to say. This year, she has published several articles in leading journals, including JAMA and New England Journal of Medicine, share experiences with disability and urge institutions to include more doctors and scientists with disabilities in their ranks.

"The exclusion of disabled people from the biomedical workforce jeopardizes the goal of true diversity and represents a missed opportunity for science and medicine," she wrote. in the New England Journal of Medicine, late May. The life experiences of doctors and researchers with disabilities, she writes, can help them care for patients and ask research questions that are lacking for everyone.

Swenor insists that medical institutions collect more data on people with disabilities in their workforce, invite people with disabilities to speak at seminars and place teachers with disabilities in leadership roles to help them define the 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 benefits of a scientific disability.

This interview has been modified for clarity and length.

How does your disability affect your daily life?

[It affects] every aspect: how to raise my children, how do I do my job, how do I interact with others. This has a huge impact on things like reading. I do not drive anymore. I can accomplish many tasks with the vision that I have. But I arrive at a point where it does not make sense [to work] more. I have only one good vision every day and I have to keep this resource. Everything I do during the day is focused on the conservation of this resource, [even] how do I organize milk in the fridge of my house – I can not waste visual resources to look for milk. When I go home, I have no vision; I can not read a recipe.

How has your disability improved your work as an ophthalmic researcher?

I think that really surprises people when I say that I've earned more than I've lost. And what I mean by that, is that I have a goal, a purpose in my life that is unshakeable. I realized how rare this can be in life. My motivation in my life is my personal life, renewed and constant.

Since I became more public about my disability, people have been looking for me. I understood that it was a privileged prospect. As a patient and also a researcher, you ride two worlds. You see the possibilities and the innovation in a way that others can not. I come to the table with a set of very different research questions [than others]. It's really what I want people to understand. While disability presents many challenges, in many cases our perspective is so valuable. Like any other marginalized group, you bring your life experience, your point of view. It is at these points of difference that we can find innovation, change, advance science, and that is what we bring.

Do you know of doctors who feared to reveal their invalid status?

Oh yes. Dozens of doctors from across the country have literally contacted me. Some of them said, "Thank you very much for talking about your disability, I do not know if I'm in a space where I can speak publicly because of stigma, I'm afraid of losing my population." of patients, xy or z. "It's a very real fear.

I have hidden my disability for a long time. During graduate school, I did not talk about it very openly. It took me a long time to get to a space where I felt comfortable. And I am in an extremely favorable ophthalmology department, where people dedicate their lives to taking care of people like me. And I was scared! I was afraid that people see my disability and not my abilities. I was afraid that people would not want to work with me. I was afraid of not being able to do my job.

Have you felt stigmatized since your "exit" as a disabled person?

People have said in front of me that they did not trust my research, because how can I see my data? Some people said that nobody wanted disabled doctors. They want doctors who look healthy; they do not want someone who seems weak or sick. And it's crazy – it's not going well.

Why do you care so much about the representation of people with disabilities in medicine and science?

Disability is the group in which everyone can fall. It is the most ignored group and the least represented, and yet, it is the only group to which anyone can be a part at any time, for all kinds of reasons. My experience of attempts to change has revealed that we do not even participate in the debate about diversity in science and medicine. We are not at the table. That's what we try to change.

And here we are [at medical and research institutions]. Statistics show that there is probably a disabled person in the faculty of each institution. But we are the least studied group. Most agencies and institutions do not even measure the number of people with disabilities, at least at the faculty level.

We need to survey this population to highlight the needs. Maybe we recognize that we have a greater representation of people with certain types of disabilities. We can recognize that we are not doing such a good job for people with all kinds of disabilities.

What gives you hope for the future of the representation of people with disabilities in science and medicine at the present time?

A number of researchers, including the deaf and hard of hearing, and individuals of other types [of disabilities], have created a [informal] research group. This is an amazing group of people trying to rally the troops and go ahead. I think this represents a seismic shift – we have been in our silos with [our] disabilities. We are getting stronger, we are starting to reach out.

Another thing is the #DocsWithDisabilities movement on Twitter launched by my colleague Lisa Meeks. Stories and comments have pushed me to keep up this momentum even when I have had some difficult days.

Susie Neilson is an intern at NPR's Science Desk. Follow her on Twitter @susieneilson or write to her at the address [email protected].