Researchers at the Washington State University Elson S. Floyd College of Medicine were awarded a $1.2 million R01 grant from the National Institutes of Health (NIH) to study medical ableism through a national survey of people with disabilities.
The WSU scientists will develop and deploy new questions for the National Survey on Disability and Health, an ongoing and nationally representative survey of over 2,000 U.S. adults with disabilities. The research is supported by funding from the NIH’s National Institute on Child Health and Human Development.
More than 70 million adults in the U.S. report having a disability and can face discrimination in health care settings because of it, a phenomenon termed medical ableism. This includes not being able to access medical facilities and being dismissed by providers who mistakenly attribute unrelated health problems to a patient’s disabling condition.
“A growing body of research suggests that ableist attitudes and beliefs are widespread among health care providers, and this likely plays a role in the health disparities experienced by people with disabilities,” said Principal Investigator Jae Kennedy, a professor in the Department of Community and Behavioral Health. “Ableism in health care can result in misdiagnoses and incorrect treatment plans as well as being unable to obtain needed care.”
Despite this, no large-scale studies have established how often people with disabilities experience medical ableism or how it impacts their health. Kennedy and the project’s research director, Assistant Professor Elizabeth Wood, plan to change that.
Ableism in health care can result in misdiagnoses and incorrect treatment plans as well as being unable to obtain needed care.
Jae Kennedy, principal investigator and professor
Department of Community and Behavioral Health
Washington State University
The additional survey questions will allow the researchers to develop a more nuanced and comprehensive understanding of medical ableism and will lay the groundwork for future interventions. Medical ableism is a complex problem that demands structural solutions, but potential interventions include improved medical education about disability, self-advocacy training for people with disabilities, and measures to increase the representation of people with disabilities in health care fields, the researchers said.
Managed by the Institute for Health and Disability Policy Studies at the University of Kansas, the national survey is inclusive of all types of disability, including physical, psychiatric, and intellectual disabilities, and all health care disciplines and settings.
“Health and well-being can coexist with disability,” said Wood. “For instance, someone with a spinal cord injury might develop cancer. They should be able to see their provider in an accessible space with an adjustable exam table, and their provider should treat them respectfully and take their symptoms seriously.”
The survey will also shed light on which groups are most affected by medical ableism since ableism intersects with sexism, racism, and other forms of discrimination that compound to produce worse health outcomes.
The project will include people with disabilities at all stages of the research, with an expert panel of disabled scholars and advocates from the Cincinnati Children’s Hospital, the Disability Economic Justice Collaborative, Johns Hopkins University, Rutgers University, the University of Colorado, and the University of Washington.
“Historically, the biomedical research enterprise has not welcomed people with disabilities into its ranks,” said Kennedy. “We want to ensure this project is fully grounded in the experiences of the disability community.”
Research reported in this R01 grant was supported by the National Institutes of Health under award number R01HD116323.
