Project to document medical ableism experienced by people with disabilities

A woman holding a white cane stands alone in a spotlight while a team of doctors line up in the darkness behind her

Medical ableism is described as practices or policies in health care that treat disabled people as invisible, disposable or less important than other patients. Credit: Adobe Stock

Mon, 11/25/2024

Christina Knott

LAWRENCE — From inaccessible facilities to inappropriate treatment plans or inaccurate assumptions, people with disabilities experience challenges in health care that may be rooted in prejudice, even by members of the medical community who are entrusted with providing care.

A new project at the Institute for Health and Disability Policy Studies (IHDPS) at the KU Life Span Institute aims to examine how these prejudices, known as medical ableism, affect people with disabilities.

The project, conducted in partnership with researchers at Washington State University, is supported through a $1.2 million, three-year grant from the National Institutes of Health. It is the first large-scale study to investigate the prevalence of medical ableism and its effects on health outcomes.

“The long-term goal of our research is to develop a nuanced and comprehensive understanding of medical ableism,” said Jean Hall, director of the IHDPS and one of the study’s lead investigators. “That understanding will ultimately allow us to develop targeted interventions to reduce the effects of ableism on the care and health of people with disabilities.”

The study will gather information directly from people with disabilities about their experiences using the long-running National Survey on Health and Disability, an IHDPS initiative that regularly collects responses from about 2,000 individuals with a variety of disabilities from across the nation on various topics. The ableism study will introduce new survey questions to identify disparities in care with the aim of improving health outcomes for the estimated 70 million disabled adults in the United States.

Hall noted that the research team also plans for the project to shed light on which groups are most affected by medical ableism. The team will explore how ableism intersects with other forms of discrimination — such as sexism and racism — that together contribute to worse outcomes for certain populations.

The National Survey on Health and Disability will be conducted in spring 2025.