In an ongoing series of commentaries, Lynette Reid describes the work done at Dalhousie University to diversify the case-based learning curriculum in the medical program.

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The starting point for our medical curriculum project was “diversifying” the identities of patients portrayed in the pre-clerkship case-based learning (CBL) tutorials and addressing stigmatizing language. As discussed in other posts, the project evolved to take on goals of disrupting normative assumptions, improving patient-centredness, and reviewing the scientific literature.

Throughout the project, we set numeric goals for specific identities and worked to resist the medicalization of these identities, and so we “made” a substantial number of patients happen to be (for example) Black or Indigenous or queer.

Image Description: An AI generated photo of colorful outlines of different people standing together, showing diversity and inclusion.

For disability, some aspects of this approach didn’t fit. Disability scholars in our working group objected to counting disabled persons, in light of the diverse and contextual nature of disability. They raised questions about the relationship between disabilities and comorbid chronic health conditions. They argued that demedicalization wasn’t the same anti-oppressive move against ableism as it was against racism.

We did revise some of the cases so that the patient “happened to be” disabled. For example, a patient with breast cancer now has multiple sclerosis, and the case portrays her navigating different systems for disability support and illness support. It also highlights collaboration and communication between the oncology team and neurology – thanks to clinical expertise from Ruth Ann Marrie, who at the time was on faculty elsewhere but has since come to Dal. Even in cases where the patient “happened to be” disabled, it was crucial to include clinical considerations, and to challenge resistance that took the form of labelling these patients as “complex.”

Unlike for other identities, crafting these cases was a relatively small part of the work we did around ableism. Ableism is deeply woven into the practice and key concepts of medicine.

There were already many patients with disabilities in the cases. An anti-ableist approach meant challenging silence around their disabilities. We added patient-centered details around life impact, navigation and advocacy. We also named patients’ choices to “cope”—e.g. by limiting participation in leisure and work—and contextualized choices within structures.

There is a norm in medicine, we learned from our clinical collaborators, not to use the “disability” label, but to specify the patient’s medical condition, and only when necessary. We had to balance the goal of disrupting the pervasive silence around disability with deference to patient self-identification.

Clarisse Paron, a philosophy PhD student who worked on our Year 1 project evaluation, brought Kathleen Bogart’s research to our attention. Not everyone who fits the definition of a particular oppressed group adopts the identity. Decisions are relational—personal, pragmatic, and/or political—and affected by stigma and bias. People often reject the label unless their disability is visible, or until they see the benefit of epistemic, emotional, and practical support from others who share their experiences. Access to societal resources also plays a role. Research affirms that explicitly identifying as disabled improves well-being.

The privilege of non-disabled identities was also an invisibility we had to address. For other dominant identities, there are obvious descriptive terms (e.g. white, straight). In the case of privilege in relation to ability, this is not so. Many awareness-raising descriptors (e.g. “temporarily-abled,” “differently-abled”) are euphemistic and patronizing. We settled on “non-disabled,” despite its implicit message that disability and ability are binary and its double negative. I decided there was no “correct language” that would absolve ableism of having an unstable and circular conceptual scheme.

At the heart of ableism is normativity: establishing certain ways of being human as “normal,” healthy, and valuable. Is it even possible to learn medicine without learning to valorize normal functioning? Early in our group process, the basic scientist in the group recommended we do away with the word “normal”. This idea came to us from the lab medicine community, where they ask physicians to characterize test results as “within” or “outside” reference ranges, specific to a given population and lab. (See this description.) There was a lot of buy-in for acting on this as a scientific recommendation.

In most specialties, there is less stigmatizing and more precise language than “normal” (with its opposition to the stigmatizing term “abnormal”). Imaging results are “unremarkable.” Genes have variants (pathogenic or not), not “mutations” or “flaws.” These are not universally implemented. For example, the web page that we used to explain why “variant” is better than “mutation” still contained “mutation” in its url. Some specialties lack commonly accepted alternatives. Our general approach was to characterize structures and physiological processes as typical or atypical, or with specific frequency statements, and describe effects on physiology and on function factually. Similarly, whenever a patient was described as “healthy” in a case, we asked for a factual statement (for example, the patient had no other diagnosed medical conditions).

We also challenged specific ableist narratives. In place of pity narratives, we portrayed the impact of diagnosis in patient-centred and nuanced ways, challenging ableist assumptions about quality of life. In place of “miracle cures,” we showed how people access supports for disability rights alongside treatment, and we portrayed the active work of patients (for example) before and after surgeries, or fitting medications and their side effects into their lives.

In effect this meant that we were using the conceptual framework of the WHO International Classification of Functioning, Disability, and Health (ICF) in all the cases, distinguishing structure, function, and participation, while accounting for relationships and social structures. A physical medicine and rehabilitation physician had suggested this to us at the beginning. It had seemed like it was too much to take on. The combination of improving patient-centredness and using an anti-ableist lens in all the cases brought us there (implicitly or explicitly).

As Susan Wendell has discussed, features of chronic health conditions overlap with features of disability: the body doesn’t function in ways society defines as “normal;” stigma and “othering” are imposed; accommodations and/or universal design help everyone. This overlap is in tension with the disability rights rejection of medicalization. (Clarisse also brought this to our attention.) We didn’t impose a single “correct” resolution of these tensions. We portrayed people who consider themselves within a range of healthy variation, and people who see themselves as disabled because of a medical condition.

We were refining our approach well into the second year, after program evaluation and reflection on shortcomings in the first year. The process of “auditing” helped us see that we still had work to do on this theme at the mid-way point of the project, even as our ability to define targets and “count” disability in the cases was limited by the contextual, personal, dynamic, and structural nature of disability.

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Lynette Reid is an associate professor in the Department of Bioethics at Dalhousie University.