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Medical ableism refers to practices or policies in health care that marginalize disabled individuals, treating them as invisible, disposable or less important than other patients.

Patients with disabilities often face barriers to health care, including inadequate facilities and biased treatment. A research group is hoping to change that.

Disability challenges are said to be rooted in “medical ableism” — a form of discrimination against people with disabilities that can negatively impact patient care. The Institute for Health and Disability Policy Studies, or IHDPS, at the University of Kansas Life Span Institute, in collaboration with Washington State University, is studying how medical ableism affects patients.

The project will develop a study that will be supported through a $1.2 million grant spanning three years from the National Institutes of Health. The study will collect data directly from individuals with disabilities regarding their experiences with medical ableism through the National Survey on Health and Disability, an ongoing initiative by IHDPS. This survey regularly gathers responses from approximately 2,000 individuals with diverse disabilities from across the country on a range of topics.

“There’s research that shows that when a physician sees a person with a disability, they’re much less likely to ask about exercise habits, smoking habits and sexual history,” said Jean Hall, principal investigator of the study.

But these are important questions to ask any patient, she said. Hall and project coordinator Kelsey Shinnick-Goddard told the Journal-World that it’s important that doctors be specifically trained on patients with disabilities.

“A lot of times, health care providers will attribute everything that they’re coming in for to their disability,” Shinnick-Goddard said. “If a wheelchair user is coming in because their back is hurting, (experts will say) it’s because they’re sitting all the time, and they’re not doing additional tests that they probably would do with other patients.”

Shinnick-Goddard said she sensed some medical “gaslighting” by health care professionals of people with disabilities, resulting in their health issues being minimized or ignored.

According to a study published in Health Affairs, over 61 million Americans had a disability as of 2016. Additionally, individuals with disabilities are less likely to report satisfaction with their care compared to those without disabilities. Despite the Americans with Disabilities Act and the ADA Amendments Act of 2008, which require equal access to health care services, significant disparities in health care access and outcomes for people with disabilities continue to exist.

In the 2022 National Survey on Health and Disability, Hall said, about 40% of those surveyed said they had experienced some kind of medical ableism.

The goal with the new study will be to identify which groups are most affected by medical ableism and explore how it might intersect with other forms of discrimination like sexism, racism or homophobia. Additionally, the team will explore how this treatment affects people’s health.

“The next step is that this research will address the effects of that ableism on people’s health outcomes and really quantifying how ableism in the health care system affects the lives and health of people with disabilities,” Hall said.

The goal is to help encourage health care facilities to be more accessible and to build awareness around care for those with disabilities, Hall said.

“The awareness is a really big piece and then taking those concrete steps to change it, whether that’s requiring better accessibility, changing medical school curriculum or supporting people with disabilities (by helping them) know what their rights are and how to request them, so that they can also be agents of change for themselves and then advocate for themselves.”

The National Survey on Health and Disability is scheduled again for spring 2025. Before its launch, a panel of experts representing various disability populations will assist in developing survey questions. These questions may cover topics such as physical access to health care facilities, the clarity and accessibility of information provided, the support received in making medical decisions, and the level of respect shown during health care visits.

The survey will be conducted over four months, after which the team will start collecting data. From 2026 to 2027, the team will examine the prevalence of ableism, analyzing which segments of their sample experience it most — whether based on specific types of disabilities, geographic location or other factors. In addition, they will investigate how this discrimination affects participants’ health and access to care.

“There’s a saying in the disability community, ‘nothing about us without us,'” Hall said. “You shouldn’t be making laws or policies without asking us what our needs are.”

“We really want to put our money where our mouth is as far as asking people with disabilities about anything that’s going to change their access to care or services or whatever it might be in real time and not just after the fact,” she said.