Disparities continue to exist for the more than 61 million individuals living in the United States with a disability. On July 20, in honor of Disability Pride Month, experts from Johns Hopkins University came together to discuss how to translate research into policy through the lens of "disability justice," defined broadly as the process of addressing inequities that affect people with disabilities. The virtual event, open to the public and part of the Johns Hopkins Congressional Briefing Series, included a panel discussion and real-time Q+A with scholars from a range of disciplines.
Bonnie Swenor, the director of the Johns Hopkins Disability Health Research Center and an associate professor at the School of Nursing, moderated the event. "Efforts to make society more inclusive for people with disabilities have resulted in great progress, yet there's often a disconnect between the disability community, researchers, and policymakers," Swenor said during her opening remarks, before launching into the multidisciplinary discussion.
"Mental health disabilities have received less legislation and policy than disabilities associated with the physical body," said Judy Bass, a professor in the Department of Mental Health at the Johns Hopkins Bloomberg School of Public Health. But mental health disorders are "actually chronic conditions … that need lifelong management," Bass emphasized. Therefore, more policies are needed to decrease disparities, increase access, and reduce stigma and other barriers.
Access to education is a fundamental right for every individual, but full access isn't a given for students with disabilities—largely due to ableism, which "can be subtle and easy to miss," said Linda Carling, the director of the Center for Technology in Education at the School of Education. "To eradicate ableism, we need a significant shift in mindset that involves recognizing, challenging, and dismantling the attitudes and beliefs that perpetuate discrimination against people with disabilities," Carling explained.
Physicians and medical researchers need "to understand the way multiple things interact [and] not reduce a person simply to a given biological marker," said Jack Iwashyna, a Bloomberg Distinguished Professor of Social Science and Justice in Medicine and a professor at the School of Medicine. For example, millions of people are now suffering from long COVID-19, and "we need research that takes into account their reality of ongoing [symptoms], even after the best possible care has been delivered," Iwashyna said.
Studies show that individuals with disabilities are often left out of research studies and clinical trials. "Action [and funding are] needed to advance the inclusion of people with disabilities in clinical trials and research, … and exclusion from participation should not be allowed without scientific justification," said Jennifer Deal, an associate professor at the Bloomberg School of Public Health. In addition, intersectionality, or a person's multiple identities, needs to become "a core demographic that's collected and reported in research," Deal said.
An overlooked segment of the disabled population includes those who are both disabled and serving as an unpaid caregiver of a family member with a disability. This population not only has to navigate the complex health care system for a family member but also for themselves, while often struggling financially and searching on the side for paid work that fits with their caregiving (and self-care) responsibilities, said Janiece Taylor, an assistant professor at the School of Nursing. "We're starting from the ground up to learn about this population, and we need funding, support, and policies in place to improve health outcomes and meet their unmet needs," Taylor explained.
Tune in for the full conversation via the archived video of the briefing at this link, and visit the website for the Johns Hopkins Disability Health Research Center to learn more about the center's mission.