WITH Foundation is pleased to present Expert Conversations, an ongoing series that features conversations with experts in the fields of healthcare, disability, digital health, and philanthropy.
Image Description: Headshot of Bonnielin Swenor, PhD, MPH, a white female with shoulder length blonde hair wearing a white top and a blue jacket.
Today’s Expert Conversation is with Bonnielin Swenor, PhD, MPH. She is an associate professor at the Johns Hopkins School of Nursing, the Johns Hopkins School of Medicine Wilmer Eye Institute, and in the Department of Epidemiology at the Johns Hopkins Bloomberg School of Public Health. She is the founder and director of the Johns Hopkins Disability Health Research Center, which aims to shift the paradigm from ‘living with a disability’ to ‘thriving with a disability’ through research, education, and policy.
Dr. Swenor’s research is motivated by her personal experience with low vision. Her work takes a data-driven approach to advancing health equity for people with disabilities. To achieve this, she focuses on three areas: (1) developing novel methods to assess and track health and healthcare inequities for people with disabilities; (2) testing innovative strategies to reduce these inequities;, and (3) building approaches that promote disability inclusion in research and higher education.
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What issue related to healthcare for people with IDD do you feel needs more attention/more funding? What role does research serve in advancing healthcare equity?
Much of my research uses data to advance equity for people with disabilities. Data is necessary for identifying disparities among people with disabilities and developing strategies to address these inequities. But for too long, the collection of disability data has not been prioritized, especially in healthcare settings. Often, we do not have the data needed to address healthcare inequities impacting disabled people. For people with IDD, these gaps in data are more significant as many of the methods used to collect disability information do not accurately capture people with IDD. There is a need for funding to support better disability data collection. This includes expanding where and when disability data is collected and improving existing disability data methods to include people with IDD.
What advice do you have for funders supporting research, especially research relating to intellectual and developmental disabilities?
Funders have an important and powerful role in advancing research. But funders must also recognize and embrace their role in dismantling societal injustice, including ableism. This includes ensuring that people with disabilities, including people with IDD, can participate in and benefit from all forms of research. There are a few actions funders can take.
First, funders should support disability research that uses community engagement and community-led approaches. For example, research questions should stem from the experiences of people with IDD and be developed in partnership with this community. Since disability intersects all groups and populations, funders should work to ensure that disabled people are included in all community-engaged research efforts.
Second, funders must support disabled researchers by including people with disabilities in all diversity efforts. People with disabilities are often excluded from funding opportunities to foster researcher diversity. Many unaddressed barriers lock out and hold back disabled people, especially people with IDD, from research careers. Funders have an important opportunity to change this.
Third, funders should prioritize research that shares back knowledge, data, and resources with the disability community. While publishing research results in scientific journals is essential, that is not where the work should end. In many ways, the results of disability research belong to the disability community. Funders must ensure this information reaches disabled people by focusing on accessibility of information, responsible data sharing, and creating meaningful networks within the disability community.
What advice do you have for people with a disability(ies) who are thinking of starting a career in science and medicine?
My advice is to go for it! There are more barriers than there should be, but more and more people with disabilities are blazing trails and tearing down those walls. Mentorship is critical. Find a mentor who is a champion for your career and who understands the barriers and biases you will face and help you tackle them. Often this is a person with a disability. Finding a community is also key. These are the people you call at the high and low points and who understand the barriers you will face. It is also essential to feel like you belong. Disabled people have every right to be scientists, nurses, and doctors, as well as leaders in these fields. For me, this has always been the toughest part. Daily doses of ableism, discrimination, and inaccessibility can make you question your career path. But that is when mentors and your community come in to help you push forward or pivot to a better place. I have more hope than ever before that this road is getting smoother. There is an increased focus on disability inclusion in research and medicine, and the next generation has a wide vision for inclusive science.
Thank you Dr. Swenor!
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