If you have a disability, you likely have had a few bad experiences with the United States’ health care system and the medical professionals who populate it.
Recent surveys have exposed potential reasons for these experiences: Many medical professionals harbor significant bias towards people with disabilities. This is not a niche issue: About 1 in 4 Americans, or about 70 million people, reported having a disability in 2022, according to the Centers for Disease Control and Prevention. But more than 30 years after the passage of the Americans with Disabilities Act, only 40% of doctors in a national survey of 714 physicians said they felt confident in their ability to treat people with disabilities. And efforts to integrate better education remain slow.
A new paper in the Journal of General Internal Medicine confirms and extends these revelations of persistent ableism, showing how it bubbles up in medical education and other parts of the health care system.
Focus groups with 17 medical school students and faculty members found that disability issues are routinely omitted from curricula, framed as an individual responsibility rather than structurally determined, and only addressed through bottom-up efforts by student and faculty rather than institutionally led. Physicians with disabilities are also discriminated against by their peers and their patients. The focus groups painted a clear picture of how structural forces and individual physicians complicate health care for people with disabilities.
“Increasingly, what we’re hearing from doctors is that they know very little about what they’re supposed to do. Who determines what a reasonable accommodation is, and how that should be paid for within the healthcare environment?” said Carol Haywood, the paper’s lead author and an assistant professor in medical social sciences at Northwestern University’s Feinberg School of Medicine.
STAT spoke with Haywood about her study and potential strategies for rooting out persistent ableism in medicine. The new research — which builds on the work of Harvard Medical School professor Lisa Iezzoni, a co-author and one of Haywood’s mentors — arrives as the National Institutes of Health is formulating a strategic plan to improve disability health research and bolstering community disability health efforts.
Part of the title of your study is, “The forgotten minority.” Why did you choose this title?
What we know confidently is that people with disabilities experience disparities in access to health care, in quality of health care, and in the safety of their health care, and this has been associated with inequities in health and health outcomes for people with disabilities. And despite knowing this for many years — for decades, in fact — there’s been very little movement to address these inequities in care.
One of our participants in the group was directly calling out the ways that, in medical education, they talk about race and ethnicity, they talk about sexual and gender minorities and the various biases that influence health care related to these groups, but they weren’t talking about disability. It was often not talked about or very poorly prioritized within those larger conversations.
Prior work revealed discrimination against people with disabilities based on physician attitudes. But we didn’t know a lot about where those attitudes were coming from, or how physicians were really learning about disability. That’s what motivated this work.
What does good medical care for people with disabilities look like?
Good quality medical care starts at a systemic level to really ensure that there are policies and procedures in place that allow people to show up in health care spaces as their whole selves, that allow service animals into clinical environments, that allow power chairs into an exam room. Because if you can’t get in the door, oftentimes physically, then, of course, you’re not getting care.
Then there’s a lot that goes into the individual patient-provider interaction. We have a lot of other work that has shown that people with disabilities are often overlooked, and their voices are not directly incorporated into care, planning, and decision-making for their own health care. And there’s a lot of assumptions made around cognition or individuals’ ability to make choices for their care, based strictly on disability and not on any other marker.
So: acknowledge that they’re human, acknowledge that they have a voice, and acknowledge that they are autonomous beings who should be able to have a choice in their care.
Is there specific training that medical professionals need to have and typically lack? What are the effects of this training gap?
If you’re going to do a physical exam for someone whose body is unfamiliar to you, if you’ve never done a physical exam with someone who has spasticity throughout their whole body, do you have the skills to support their body position or how to do a procedure or exam with diverse bodies?
What we know is that for many physicians, it’s not part of their core curriculum. They don’t know how to work with people with disabilities who have diverse bodies, so that results in substandard care. There are examples of folks who have not had their weight checked for decades in a health care space because the clinic doesn’t have an accessible weight scale, and the staff haven’t come up with other ways to weigh them. There are examples of folks who have not been examined outside of their wheelchair, because the staff and clinicians don’t know how to facilitate a safe transfer onto an exam table, or they don’t have the skills or equipment to do so.
This results in failures or substandard primary and preventive care for people with disabilities and long-term care. We see this associated with higher health care utilization, higher use of emergency departments and acute care environments, and poorer health outcomes overall.
Where does the blame lie for these inequities and what should we target for change?
The gap in physician knowledge falls in part at the institution level, like medical schools are failing to teach trainees about these disability and civil rights mandates. At the same time, I think we can go even a step further to say that it’s actually a failure of accrediting bodies, that disability and related responsibilities for physicians are not mandated competency required for accreditation, according to the Liaison Committee on Medical Education.
There is not a lot of motivation at the level of medical schools to make space for disability in the curriculum, and that was one of the barriers that we heard among participants in this group, too, who are really pushing to get disability in the curriculum. Their curriculum committee is not prioritizing disability, because that’s not a requirement for accreditation.
What we’re doing is pushing back on that, and saying, actually, disability should be part of the curriculum throughout all four years. Disability is part of human life and diversity, it should show up everywhere and not be a standalone curriculum that you’re trying to squeeze into an already packed curriculum.
We have to look at physician training and not just undergraduate medical education, but also graduate medical education and continuing medical education. Because physicians who are practicing today do not know their responsibilities to care for people with disabilities, and they’re not going back to med school. So we’ve got to get continuing medical education to teach physicians what their responsibilities are.
Is it all bleak? Is there anything positive to look towards?
In 2024, there were two nondiscrimination rules that were passed, and I think it’s important progress. I’m optimistically skeptical. But it’s yet to be seen whether or not these regulations will actually be implemented, and what I know is that many hospitals or health systems actually don’t know how to implement them yet. There’s not a lot of guidance for implementation. There are health systems that are really asking for guidance to implement these new regulations. And so it’s forcing health systems to really think about it. And that is what I feel most optimistic and excited about.
Why does disability representation matter?
There’s this example in the paper where a student talks about the fact that their professor on the slides is using the term “mental retardation,” which is a long, outdated, and discriminatory term, and they’re using it as the acceptable term and teaching students to use that. Their peers started to use that language and adopt it as a normalized language and practice. And so it’s a very real example of how you can see this perpetuation of language and bias actually go from one generation to the next.
Another one of our participants, a faculty member physician who uses a wheelchair, reported that they’ve had people directly say to them, “No offense, but I just want the best doctor I could have, and I don’t know how you would be able to be that when you can’t even help yourself.”
There’s just really explicit discrimination within the field of medicine, and this also goes back to the importance of diversity and representation in the field, that there’s other work to show that when you’re exposed to diversity, you start to understand that it exists, that doctors can have disabilities and still be great doctors.
We have been building this evidence for a long time, and we’re at a moment when there has been a little bit more readiness to hear it on the part of the public, on the part of our national government. I’m concerned about how and if that readiness will maintain, especially as conversations about equity and diversity are shut down across our country. But I’m hopeful that some of these regulations that we’re seeing at the national level will give us space to continue the work.
STAT’s coverage of disability issues is supported by grants from Robert Wood Johnson Foundation and The Commonwealth Fund. Our financial supporters are not involved in any decisions about our journalism.