Jan 2024

By: Jasmine Lopez, B.S., B.A.

Introduction

A strong leader and unwavering voice for the disability community in biomedical research and beyond,  Bonnielin Swenor, Ph.D., M.P.H., is an expert researcher in disability equity, disability data, and accessibility. Dr. Swenor serves as the Director of the Johns Hopkins University Disability Health Research Center and has joint appointments at the Johns Hopkins School of Medicine Wilmer Eye Institute and Johns Hopkins Bloomberg School of Public Health Department of Epidemiology. In addition to her research, Dr. Swenor leads the Swenor Research Group, co-hosts The Disability Equity Podcast, and is a co-founder of the Disability Health Equity Research Network. Building on her legacy as a co-chair on the National Institutes of Health Working Group on Diversity, Subgroup on Individuals with Disabilities, she has been instrumental in advocating for the NIH’s recent designation of people with disabilities as a population experiencing health disparities. As a researcher, she also advocates passionately for equitable data collection for the U.S. disability community. As students, we can look to Dr. Swenor for inspiration on how best to use our lived experiences and identities to transform spaces and advocate for the communities we represent and serve.  

Interview with Dr. Bonnielin Swenor

Jasmine Lopez, Alumni Engagement Committee Co-Chair of the SHPEP National Alumni Advisory Board and AAMC Biomedical Research Workforce Specialist, interviewed Dr. Swenor to discuss the diverse perspective she brings to scientific research and policy. Furthermore, Dr. Swenor highlighted the importance of students’ representation in these spaces and mentorship. 

Disclaimer: For the purposes of clarity and length, the interview with Dr. Swenor has been edited.   

JASMINE: In your article “Losing Vision and Gaining Perspective”, you shared how you spoke with a research study participant who asked “If you can’t talk about your disability, then, how can I?”. How have your lived experiences influenced your work as a researcher? 

DR. SWENOR: “My life is full of opportunities for hypotheses and study questions. Every day, I face barriers, discrimination, and biases. I see where disability data is not being collected. To me, those are all research opportunities. That’s one way. The other way is that I think for all of us, our experiences and diverse perspectives are so valuable in how we interpret data. I quite literally see data differently. And the experiences I’ve had and who I am mean that when I am interpreting data results, I interpret that through the lens of my own disability. 

For so long, I wanted to be a scientist. I actually started my career in basic science. Along my journey, I realized I wanted to get involved with public health. It was right when I was applying to Master of Public Health programs that my vision loss began very suddenly and rapidly. As my vision loss began, that became a personal experience. When I did eventually enroll in my MPH program, I took a course called Eye Disease Epidemiology. Truly, to just learn about what was going on with me in my life. The professor was great. She was gracious enough to meet and was actually one of the first people I disclosed my disability to in graduate school.” Dr. Swenor described how that professor then became her mentor. She introduced Dr. Swenor to ophthalmology epidemiology because she believed her experiences with vision loss would propel and strengthen her research career. 

JASMINE: Why do you believe it is important to increase the representation of intersectional, underrepresented backgrounds, including of disability status, among biomedical researchers? 

DR. SWENOR: Dr. Swenor attended a seminar on open access data sharing where a member voiced concerns about data sharing from the perspective of Indigenous communities. “If we didn’t include those perspectives, we could potentially not know [about those issues] and be creating policies and doing work that’s actually harmful for parts of our communities,” she said. “Making sure we’re being inclusive, particularly if we know the work that we’re doing with the prevalence of what we’re studying, for example, is high in a certain population. Not partnering with the community and not including people with those lived experiences and those backgrounds on the research team means that we’re not doing all we can to address the problem.” 

JASMINE: You previously discussed the need for mentorship from faculty with disabilities. If students and researchers do not have access to a mentor who shares their backgrounds or experiences, where would you recommend they turn? 

DR. SWENOR: “Mentorship is so critical in research careers, medical careers, and academia. I always suggest find[ing] your community and think[ing] broadly about mentorship. That usually means having to look outside of where you are in an institution, unfortunately. Also, thinking very broadly about peer mentors. Looking at alumni, others within your cohort or who are still trainees. It’s also, I think, very important to think outside of academia. Our advocates, activists, policymakers, sometimes can provide really important expertise or advice, depending on the question. I always say the key is to have your home team, your home base of people where you don’t have to explain yourself or your identity.” 

If students find themselves in institutions where they don’t feel supported, Dr. Swenor encourages those who “feel empowered to speak out and try and create change in the environment they’re in,” to outline their concerns, propose solutions, and build support to advocate for institutional change. 

“It’s really the core of activism and advocacy. [Do] not be afraid to use that in academic settings. Again, I know it’s not always safe, but it is a really powerful approach.” 

She also recognizes the power imbalances between students and institutions. She shared, “Not every student is out about their disability, and that’s okay.” Student groups can be a source of social support and disability service offices can be valuable advocates. Furthermore, mentors may be able to advocate on their behalf, “protecting privacy when necessary,” according to Dr. Swenor. 

JASMINE: Can you please share your perspective on the importance of ensuring the inclusion of people with disabilities in policy decisions? 

DR. SWENOR: “We need more people with disabilities in leadership roles in federal agencies, health care institutions, and academic settings, so that moving forward, we are creating more disability inclusive policies. Not just people with disabilities in disability roles, [but] in leadership roles across the board. People with disabilities belong in all places [where] decisions are being made. We need to make sure that is happening, and that people feel safe disclosing disability in those spaces. The importance of having people with disabilities in policy positions is that it’s absolutely essential to addressing the exclusive practices that have historically happened in policymaking activities.” 

Dr. Swenor identified students as the next generation to create change. She noted, “People with disabilities are the largest minority group. Our health inequities have largely not been addressed, and it is exactly because we’re not represented in these places.” 

“I always say, if you’re solving an equation for health equity, and you’re not including disability, you’re never going to solve that equation and you’re never going to get to that outcome.” 

“I also, as someone who works so much in policy, [hope] that the next generation does get more active and involved in policy. We need healthcare professionals with disabilities in policy positions. Policies have large impacts, but we need people to get involved and there’s great opportunities. It just takes awareness and making people feel like they belong.” 

The Association of American Medical Colleges (AAMC) thanks Dr. Swenor for her work advancing health equity and the representation of people with disabilities in research. The AAMC dedicates itself to supporting people of all backgrounds in their pursuit of biomedical research careers. Please refer to the AAMC’s resources below if you are interested or involved in biomedical research! 

AAMC Medical Research Resources: 

• Medical Research 
• Diversity, Equity, Inclusion, and Accessibility in Biomedical Research 
• Predoctoral Programs by School 

• Summer Undergraduate Research Programs 
• MD-PhD Summer Undergraduate Research Programs 
• Postdoctoral Programs by School 
• AAMC Career Development Program for MOSAIC Scholars 
• Free at the AAMC Store: “Compact Between Biomedical Graduate Students and Their Research Advisors” 
• Free at the AAMC Store: “Compact Between Postdoctoral Appointees and Their Mentors” 

Dr. Swenor has published and been featured in a variety of resources linked below to support the disability community. 

Resource List: 

• The Disability Equity Podcast 
• NASEM webinar series: “Beyond Compliance: Promoting the Success of People with Disabilities in the STEM Workforce” 
• Johns Hopkins Medicine YouTube video: “Vision Loss and Mental Health with Dr. Bonnielin Swenor” 
• University of Michigan Medicine: “DocsWithDisabilities Podcast: Ep 9: Bonnie Swenor” 

• Nature Human Behaviour: “STEM doctorate recipients with disabilities experienced early in life earn lower salaries and are underrepresented among higher academic positions” 
• The New England Journal of Medicine: “Disability Inclusion – Moving Beyond Mission Statements” 
• The Lancet Public Health: “Including disability in all health equity efforts: an urgent call to action”