By Stacey Kusterbeck
There is increasing attention to the issue of ableism in healthcare. One concern is that medical education is not doing enough to include the perspectives of people with disabilities.
“I’m a disability studies scholar and I identify as disabled, and I’ve heard folks in my community talking for a long time about the need for better education of health professionals, and asking how we can get our perspectives into the spaces in which they are trained,” says Liz Bowen, PhD, an assistant professor of bioethics and humanities at Upstate Medical University and a Hastings Center presidential scholar.
Bowen and colleagues authored recommendations for medical educators to develop a disability-conscious curriculum.1 The motivation was a 2021 survey showing that 82% of physicians believe that people with significant disabilities have a worse quality of life than nondisabled people.2
“Though the results were hardly surprising, the study was remarkable in that it put hard, stark numbers to the testimonial evidence that had been coming out of disability communities for decades,” says Bowen.
Anecdotally, individuals with disabilities reported that healthcare providers viewed them as having a poor quality of life, misunderstood them, and did not provide accommodations.
“The training of health professionals is really where the rubber meets the road in terms of creating a more ethical and equitable healthcare system,” says Bowen.
“For clinical ethicists who have teaching responsibilities, ethics training can be an ideal place to begin integrating anti-ableist habits of mind into medical education,” she adds.
For faculty who provide ethics education to medical students, it is important to address finding ways to address ableism. “Because disability is so often a component of bioethical concepts and debates, ethics education is a particularly fitting place to challenge prevailing assumptions about disability,” says Bowen. However, faculty can address ableism even in the biomedical educational components of the curriculum. For example, OB/GYN training might caution medical students against assuming that disabled patients are sexually inactive.
In the hospital setting, ethicists can provide education on issues relating to disability or ableism. “Concepts like quality of life, futility, and capacity, which inform medical practice and decision-making on a regular basis, are inherently bound up with our understandings of what disability means,” asserts Bowen.
Many people, including physicians, tend to have stigmatizing and biased views of disability. “When ethical issues arise that involve disability, physicians are often ill-equipped to think through them,” says Bowen.
For example, a newly disabled patient may refuse treatment because they think life is not worth living with a disability. Doctors might think there is an ethical obligation to validate the patient’s view to respect patient autonomy. From a disability-conscious perspective, the physician first would question whether the patient is really making an autonomous decision. Then, the physician would inform the patient about what their future could look like with adequate support and adaptive devices. The clinical team also could provide the patient with an opportunity to meet others who have led flourishing lives after becoming disabled.
“Assumptions about quality of life and capacity drive physicians’ thinking about what is medically appropriate on a regular basis,” says Bowen. This can lead to all kinds of disagreements among patients, families, and care teams. Often, care teams disagree with families about the appropriateness of life-sustaining or other treatments for people with disabilities. Ethicists can help clinicians and patients to resolve these conflicts by developing a shared understanding of what the patient’s disability actually means for quality of life. Ethicists themselves, though, “are by no means immune to ableist bias. In fact, clinical ethicists are often steeped in the same medicalized and deficit-based models of disability that characterize the healthcare system at large,” according to Bowen.
Ethicists can begin by examining how their own biases could influence their recommendations. “There is a vibrant world of disability bioethics scholarship that can help guide this introspection. When equipped
with those tools, ethicists are well-positioned to identify when ableism is part of the dynamics of a consult case, and to provide alternative perspectives,” offers Bowen.
Ableism is not unique to the hospital setting, observes Catherine McCarty, PhD, MPH, HEC-C, affiliate faculty at the University of Minnesota Center for Bioethics. During COVID restrictions in 2020, McCarty conducted discussion groups via Zoom for a quality improvement project to identify what support people with disabilities needed in healthcare settings. The participants were individuals with spinal cord injuries who used wheelchairs for mobility. Many noted that they were treated differently during remote meetings, when healthcare providers did not know they used a wheelchair. Participants described how providers would speak in a normal tone and volume and would address the patient directly. In contrast, the participants stated that during in-person encounters, healthcare providers usually spoke loudly and addressed whoever was accompanying them, instead of the patient directly.
“People with a visible disability are more likely to experience bias. People are less likely to seek out their opinion,” says McCarty. McCarty experienced this personally after developing Bell’s palsy, a facial paralysis that makes it difficult to pronounce some words. “In a recent ethics consult that I attended, I did not want to speak up because I have been self-conscious about my looks and speech. My son challenged me that, by avoiding direct contact with people, I was missing the opportunity to confront potential ableism, and he was right.” The ethicist leading the consult made sure to specifically ask everyone who had not already spoken if they had anything to add. “Often, we see people with disabilities not having their voices heard or their opinions valued. This makes sure that everyone has the opportunity to be heard,” says McCarty.
- Bowen L, Cleveland-Manchanda E, Cyr PEP, et al. Anti-ableist medical education: Meeting the challenges. Hastings Center Issue Brief. https://www.thehastingscenter.org/anti-ableist-medical-education-meeting-the-challenges/
- Iezzoni LI, Rao SR, Ressalam J, et al. Physicians’ perceptions of people with disability and their health care. Health Aff (Millwood) 2021;40:297-306.
