Hubstaff Report
/ Released on October 2, 2023
Bonnielynn Swenor is the founder and director of the Johns Hopkins Center for Disability and Health Research, which uses a data-driven approach to shift the paradigm of “living with disability” to “thriving with disability.” She is also an associate professor in the Johns Hopkins School of Nursing and holds joint appointments in the Wilmer Eye Institute at the School of Medicine and the Department of Epidemiology at the Bloomberg School of Public Health. Her own experience with disability drives her research; she was instrumental in the NIH’s designation of people with disabilities as a “health disparities population” last week.
Image caption: BonnieLynn Swenow
Image courtesy of Johns Hopkins University School of Nursing
What do you need to know?
Designating people with disabilities as a health disparity population is a milestone achieved after years of advocacy.
A population may receive such a designation if there is a “significant disparity in the overall disease incidence, prevalence, morbidity, mortality, or survival rate of that population compared with the health status of the general population.”The Director of the National Institute on Minority Health and Health Disparities (NIMHD), in consultation with the Director of the Agency for Healthcare Research and Quality, is the only person authorized to make this designation.
In 2021, the National Council on Disability, which advises Congress and the President, outlined overwhelming evidence showing that people with disabilities face “significant disparities,” reflecting years of advocacy from the disability community. The following year, I took a number of steps, including serving as co-chair of a working group for the National Institutes of Health (NIH) Director’s Advisory Committee that recommended this designation. In response, a committee was formed within the NIMHD Advisory Committee to consider this designation.
On September 1, the advisory committee rejected designating people with disabilities as a health disparity population, a refusal that outraged the disability community.
“Nothing about us, without us” is the disability community’s motto. However, this advisory committee did not include any disabled people, which likely impacted their understanding of disability. This rejection stood in stark contrast to recent groundbreaking efforts by the Department of Health and Human Services to address the inequalities faced by people with disabilities.
But there was only a short time to act: it was the advisory body that had rejected designating people with disabilities as a health disparity population, and the director of NIMHD had not yet made a final decision.
I couldn’t ignore this – as a disabled person and a disability equality researcher, I felt I had to do something.
I contacted my colleague, Washington State University professor Jay Kennedy, with whom I recently co-authored an op-ed explaining why this designation is important. I then called former Congressman Tony Coelho, a lead sponsor of the Americans with Disabilities Act (ADA). Together, we decided to collect signatures in support of this designation for people with disabilities.
In less than 48 hours, our joint letter from disability advocates, researchers, medical and public health experts and organizations had garnered more than 1,500 signatures, which was an amazing result for us and clearly reflected the broad support for this designation.
On September 26, NIH announced that the director of NIMHD would grant the designation. The announcement was doubly significant because it came on the 50th anniversary of the Rehabilitation Act, which predates the ADA and protects people with disabilities from discrimination.
In the announcement, NIH Acting Director Lawrence A. Tabak said, “To the disability community, we have listened to you and thank you for sharing your experiences with NIH. This designation marks an important step in our agency-wide efforts to advance disability health equity, including updating the NIH mission statement to accurately reflect our goal of translating scientific discoveries into improved health for all people, including those with disabilities.”
What do these changes mean for people with disabilities and their advocates?
This designation is necessary to ensure that people with disabilities are included in NIH funding and programs focused on eliminating health disparities and that research studies include more people with disabilities. This designation is also necessary to support efforts to address the sharp health disparities that affect people with disabilities from various marginalized groups, including people of color, members of the LGBTQ+ community, people living in rural areas, and people with low incomes.
At the Johns Hopkins Center for Disability Health Research, we have struggled to secure funding to address health disparities for people with disabilities, and this designation opens up much-needed opportunities to support research like ours.
Will this change by NIH have downstream effects?
The announcement of this designation coincided with funding announcements to support research addressing disability health and health care disparities, which is a fantastic, immediate impact.
The research we prioritize and the people involved in that research process impact society. In the long term, this designation opens the door to much-needed social progress for people with disabilities. It has the potential to shift society away from the stigma surrounding disability. And I am more hopeful for that positive change than ever before.