As an occupational therapist used to live in the metropolitan Atlanta area, Dr. Khalilah Johnson viewed her community as a racially, linguistically and ethnically diverse population of “black, brown, and everyone else in between.”
However, even in such a diverse city, Johnson seemed to repeatedly only serve white patients.
“I could not understand how [it was], that I was living in a place that was as diverse as – I lived in Gainesville and Alpharetta even further into the city – that you had all these people, [with] more than 100 languages are spoken in Atlanta, but I always had just white patients,” Johnson said.
This was the impetus for Johnson’s race-focused clinical practice and research. When she moved to North Carolina to pursue a P.h.D. at the University of North Carolina at Chapel Hill, she began working in public developmental centers to help institutionalized people.
While working in these centers, Dr. Johnson noticed disparities in services provided to Black individuals. For example, families weren’t informed about certain medical waivers that existed, and they lacked knowledge about accessing autism evaluations. Even in areas considered “resource-rich,” patients from marginalized communities were consistently excluded from the available resources.
“It directly impacted how I was providing services, [and] how I saw my responsibility as a practitioner and an emerging researcher at the time,” Johnson said. “My research needed an equity focus, but also needed to be accessible in terms of how the communities I was working with participated, but also benefited, from the research I was doing,”
The beauty of occupational therapy
Johnson was first introduced to the field of occupational therapy – a field of therapeutic medicine focused on assisting people in everyday activities – in high school, when her father had a stroke.
Initially unfamiliar with rehabilitation sciences, Johnson hadn’t considered it as a career option.
“It was really interesting that I, in my head, conceptualized it as the aesthetics of medicine,” Johnson said. “You were still connected to the medical system, doing things that were highly scientific, but there was an art and a beauty and a different sort of craft in how they brought medicine and rehab to the therapeutic space.”
After taking a health professions elective to learn more about the field, Johnson ultimately applied and was accepted to the occupational therapy program at Brenau University in Gainesville, Georgia.
Johnson’s interests centered around adults with intellectual and developmental disabilities, a “forgotten about” group compared to more popular specialties like pediatrics.
“Kids with developmental disabilities grow up to be adults with developmental disabilities,” Johnson said.
After graduating from Brenau, Johnson pursued her P.h.D. at the University of North Carolina at Chapel Hill, the only P.h.D. program she applied for. She noted that, though she took a big risk, her acceptance demonstrated her strong connections to her former mentors and her confidence in where she focused her attention.
“It really happened from there,” Johnson said. “Falling in love with research as a Master’s student and continuing to cultivate those relationships with professors, particularly around my research interests … really helped me land clear where I am now.”
Community-engaged research
Johnson became the first Black student to graduate from the P.h.D. of Occupational Science program at the University of North Carolina at Chapel Hill.
Currently, Johnson works with community-engaged research benefiting adults with intellectual developmental disabilities. As the name suggests, community-engaged research involves working in the community, which includes parents, guardians, aunts, uncles, and anyone who provides care to patients with disabilities.
“Their needs and concerns are really what make up my research questions,” Johnson said. “The data collection process happens with their guidance, [the] analysis with them, the writing of the product with them — I do not do anything that is outside of working with the community.”
Community-engaged research is time-intensive, Johnson noted, so she partners with researchers and faculty who she connected with over 10 years ago as a doctoral student.
Johnson also received the Robert Wood Johnson Foundation grant, awarded to research that addresses the root causes of health inequities in the United States linked to structural and systemic racism. The grant was significant, because it is difficult to persuade big foundations and federal agencies to fund community-engaged research. Such projects require large amounts of money to operate in a way that is both sustainable and beneficial to the community her research serves, she noted.
“Getting the Robert Wood Johnson grant was huge, it was a big deal for me,” Johnson said. “As a junior faculty member, getting funding is always a big deal.”
However, as for many researchers and healthcare professionals, COVID-19 disrupted many aspects of Johnson’s work, which is deeply connected to interfacing and interacting with the community. Thus, the pandemic altered the way she conducted her research, forcing her to reconceptualize how community-engaged research could continue, away from the community.
Looking to the future, Johnson hopes to create a model of what culturally-affirming community care looks like – one that follows how people live their lives. She also hopes to impact legislation, such as Medicaid.
“The other part of my work is working with big data,” Johnson said. “Understanding Medicaid information and how our Medicaid dollars are used to provide care, making sure people have access.”
In the long-term, Johnson hopes to build her own research center dedicated to allowing people with intellectual developmental disabilities run their own research projects.
“The more immediate thing is to survive these next few years and really continue building capacity not just for my own program of research, but around here for adults with intellectual and developmental disabilities [to] become their own researchers,” Johnson said.
