Impact Report

Khalilah Johnson’s research with disability communities encourages health systems and policymakers to address persistent access gaps and invest in community-engaged solutions with real-world impact.

More than 1 in 4 U.S. adults report having a disability, according to the Centers for Disease Control, highlighting the scale and urgency of increasing access to health care services for all individuals.

Khalilah Johnson is an assistant professor in the Division of Occupational Science and Occupational Therapy in the Department of Health Sciences within the UNC School of Medicine. She examines pathways to health care for racially diverse people with intellectual and developmental disabilities.

How did you discover your specific field of study?

Occupational science and therapy sort of found me. I was first introduced to it following a medical incident with my father. I was familiar with physicians, nurses, case managers, and physical therapists, but not occupational therapists. Rehabilitation appeared to be more than restoring and remediating function. My dad was more than his condition. If health care could look like this, I wanted to know more.

To my surprise, there was a school of occupational therapy (OT) at a women’s college a little over an hour from where my family lived. So, I added Brenau University to the list of schools I was applying to and declared pre-occupational therapy as my major. Thankfully, it all worked out. Fast forward to the end of my time at Brenau. I expressed my interest in becoming a clinician scientist to a couple of faculty mentors who suggested UNC-Chapel Hill as an ideal place to pursue my interests. I applied to the Doctoral Program in Occupational Science in 2011, and 15 years later, here I am.

Academics are problem-solvers. Describe a research challenge you’ve faced and how you overcame it.

One of the greatest challenges I face as a community-engaged health services researcher working with diverse people with intellectual and developmental disabilities is convincing funders that disabled people are experts in their care and can lead research efforts and mobilize knowledge to impact change in their communities.

In an interview for the Health Equity Scholars for Action program — a career development award funded by the Robert Wood Johnson Foundation — I stated that as long as the needs and concerns of disability communities remained absent from funding priorities, efforts to reduce health disparities will continue to fall short. While few appeared somewhat stunned by the statement, others nodded in agreement and affirmed these enduring challenges require approaches centered on the community in ways that had not yet been celebrated by the academy.

Describe your research in five words.

Disability communities deserve equitable care.

Who or what inspires you? Why?

Broadly, my work is inspired by my clinical experiences working in intermediate care facilities for people with intellectual and developmental disabilities. I found it difficult to provide quality OT services in ways that centered their needs as well as their wants and interests. Much of what was expected from me, and the residents of these facilities, was based on problematic attitudes about what people with disabilities can and should do, and that engaging in meaningful activities as habilitation was something that OT should not be concerned with. I made a personal and professional commitment to do something about it. 

If you could pursue any other career, what would it be and why?

A professional clarinetist. I have to toot my own horn (pun intended) because I was quite good. I actually ranked top player in Georgia for several years in a row. I love music. It’s the only discipline that combines art, history, language, math, aesthetics — you name it!