Disability Perspectives on the Adverse Health Effects of Medical Ableism

PROJECT SUMMARY A growing body of research shows that ableist attitudes and beliefs are widespread among healthcare providers and that many healthcare settings still lack necessary accommodations for patients with physical, psychiatric, sensory, neurological, and learning disabilities. This medical ableism likely contributes to the substantial health disparities experienced by people with disabilities. However, public health research to date has not evaluated the frequency and variety of medical ableism experiences among patients with disabilities, nor has it measured how these experiences adversely affect the care and health of disabled patients. The long-term goal of our research is to develop a nuanced and comprehensive understanding of medical ableism that will ultimately allow us to develop targeted interventions to mitigate its effects on the care and health of people with disabilities. The objective of this observational study is to conduct quantitative analyses of the medical ableism phenomenon and its impact on the healthcare and health outcomes of people with disabilities. This research will move the field beyond abstract assessments of internal ableism among providers by providing detailed evidence about how people with disabilities experience medical ableism. The specific aims of the project are: 1) to create and field survey modules measuring medical ableism and its adverse care and health impacts, 2) to characterize experiences of medical ableism, and 3) to identify the adverse care and health impacts of medical ableism. These aims will be met using a large, diverse, and well-established survey developed by the research team: the National Survey on Disability and Health (NSHD). The 5th wave of the NSHD is currently open, and the previous wave had a sample size of 2,725 adults with a variety of disabilities, providing sufficient statistical power for subpopulation analyses. The project research team and its expert advisory panel, comprised solely of researchers with disabilities, will model best practices in disability inclusion and representation in disparities research. It will offer researchers and advocates a new, publicly accessible, and user-friendly data source on critical dimensions of medical ableism. The large and diverse survey sample will allow users to explore intersections between disability and race, ethnicity, gender, sexual orientation, and socioeconomic status. The survey questions can be adopted or modified by advocates to assess discriminatory practices and environments among local healthcare providers. The findings will also allow educators to develop and refine disability curricula and target anti-ableist practices in medical education. The project further the National Center on Medical Rehabilitation Research’s mission to foster the development of scientific knowledge needed to enhance the health, productivity, independence, and quality of life of people with disabilities.