Disability advocacy is critically important, now more than ever. Major reports on the health of people with disabilities cite the lack of physician training on disability as one of the most significant barriers to healthcare for this population. The ongoing COVID-19 pandemic has revealed undercurrents of ableism in medicine that adversely affects their healthcare quality and access. Despite this, a 2017 survey of American medical schools estimated that less than 25% of schools include any disability-focused training. The authors of the study note that the primary barrier reported by medical schools without disability training was that no one was advocating for inclusion of this topic in the curriculum. In order to increase disability inclusion and representation in medical education, schools need a disability champion [1].
When I first started medical school in 2018, I was eager to learn more about healthcare for people with disabilities, but I soon learned that the curriculum offered little to no training specific to disability. There also weren’t many opportunities to interact with patients with disabilities until third year clerkships. I was motivated to initiate curricular reform to incorporate disability training, but I was uncertain of where to start – and I was certainly no expert. Over the next three years, I collaborated with disability activists in the local community, faculty, and classmates to design and teach four sessions on disability issues in healthcare. For every success, I experienced failure. Although the curriculum includes teachings on disability, we do not have a longitudinal disability curriculum as I had planned. Furthermore, my school still does not employ any standardized patients with disabilities to teach students in our clinical skills course. Still, I believe there has been a shift in the culture at my institution and students are better equipped to care for patients with disabilities in whatever specialty they choose.
Medical students with an interest in the healthcare needs of patients with disabilities can be instrumental in addressing this gap in our training. Importantly, my experiences in medical schools have demonstrated that, with support and guidance, students can be agents of change and promote anti-ableism at their institutions, working towards disability consciousness rather than disability competency. Disability consciousness was defined in a 2020 paper as a novel approach in medicine that utilizes disability studies and the principles of intersectional disability justice to confront systemic injustice and address health disparities for people with disabilities [2].
This blog post is written as a guide for any medical student interested in implementing or improving training on disability within their medical curriculum. Below I describe several key tips for student advocates initiating curricular reform at their medical schools.
When initiating curricular reform, you may experience barriers to change, like I did. When I met with course directors about how to incorporate more teachings specific to disability, I frequently encountered three obstacles: a lack of faculty knowledgeable on disability, insufficient space in the curriculum, and deprioritization of disability relative to other topics. With help from my faculty champion, I was able to better circumvent these barriers.
After orienting yourself to medical school, identify a supportive faculty member who can become your “faculty champion”. A faculty champion is a person who supports your curricular reform goals and will advocate on your behalf to other faculty. Recommendations for faculty champions include physicians who have disabilities themselves or have experience and training working closely with patients with disabilities (such as physiatrists, geriatricians, developmental-behavioral pediatricians, and internal medicine physicians).
However, your faculty champion does not need to have an extensive background in disability or even be a physician! It is more important that they value your ideas and demonstrate commitment to curricular reform. My faculty champion was not a physician, but an attorney with a focus area in health disparities research who directed our public health course.
If you are having trouble finding a faculty champion at your institution, it is perfectly okay to look elsewhere for mentorship and support. I identified a second faculty champion at a different medical school when I attended a national conference on disability. MSDCI can also help to connect you with faculty champions across the country – just ask!
Although I felt strongly about the need for curricular reform, I did not have a strong plan at first. When I sat down with course directors as a first-year medical student, I avidly advocated for a longitudinal disability curriculum but without any specific “asks”. For this reason, the first meetings with faculty were unproductive and frustrating. My faculty champion encouraged me to create a list of learning objectives that were not covered in the curriculum, and I took this suggestion. I quickly learned that curricular reform is best achieved with evidence-based “asks” that involve concrete, manageable changes to preexisting curricula.
The “asks” process has three general steps:
a) First, identify specific topics or skills that the current curriculum does not adequately cover or areas of a preexisting curriculum that need improving. To do this, I highly recommend consulting the “Core Competencies on Disability for Health Care Education” developed by the Alliance for Disability in Health Care Education. [3]
b) Design learning objectives that address the gaps in teaching. The learning objectives can be simply taken or adapted from the “Core Competencies”. Having this document on hand, as well as other papers or articles citing evidence for change, is extremely helpful.
c) Recommend the addition of the learning objectives to specific areas of the curriculum.
This ‘ask’ process also works well for improving pre-existing disability curricula. When advocating for curricular changes, I recommend sending an email to course directors and involved faculty, looping in your faculty champion, to arrange a face-to-face meeting to discuss curricular reform.
Be prepared for course faculty to ask you to help design and teach the learning objectives you brought to their attention. If you have this opportunity, seize the chance to ask for more comprehensive, longitudinal disability training that spans all four years of medical school and actively incorporates people with disabilities as teachers. Although the responsibility may seem daunting, this is an incredible opportunity as a student to liaison with the local disability community, your faculty champion(s), and other experts on disability (physicians, researchers, disability organization leadership, disability rights lawyers, politicians, etc.) to create high-quality curricula specific to disability. You may also be able to evaluate the effect of the curricula on student perceptions and/or skills then publish your results, adding to the literature and serving as a model for other medical schools.
The MSDCI webpage has a resource tab with a comprehensive listing of books, papers, guides, videos, and more. You may also consider reaching out to the MSDCI leadership to be put in touch with medical students who have experience with curricular reform.
The mantra of the disability rights movement is “Nothing about us without us!”, a slogan of power and pride emphasizing the need for disabled people to participate in decisions involving and affecting them. People with disabilities have expertise about their lives that, when integrated into medical curricula, enriches students’ understanding of disability and how to provide patient-centered care to patients with a wide range of disabilities.
During my first year of medical school, I worked hard to forge connections with local disability advocacy groups and organizations through outreach and volunteering. I was able to meet and befriend many disability activists in my local community whose lived experiences informed the courses on disability incorporated into the curriculum. Many of these community members also reviewed the class materials and offered valuable feedback on them. When designing curricula on disability, include people with disabilities as content experts and/or patient-instructors. For example, when I had the opportunity to develop a problem-based learning case on disability, I first interviewed members of the disability community to understand common barriers affecting their daily lives and access to healthcare. With their testimony, I designed a case based on actual patient experiences, which required medical students to research real community programs and resources accessible to patients with physical disabilities.
Disability panels are one popular and relatively easy way to include disability perspectives, but the interaction may be brief and limited by the question-and-answer format. I would try to push for more longitudinal and dynamic interaction, such as advocating for patients with certain diagnoses to speak about their lives or including people with disabilities as standardized patients. Formal clinical skills training on disability and learning from people who have disabilities will prepare students for clinical clerkships. It may also serve to reduce the potential harms of the “hidden curriculum” where students may be exposed to ableist modeled behaviors on rotations.
In collaboration with a medical classmate, I founded a student-led disability advocacy group that stays active through community outreach, service, curricular reform, and political advocacy. Students with disabilities are underrepresented in the health sciences, and face stigma and discrimination on the basis of disability. Student-led disability advocacy groups are fundamental for creating a safe space for students with disabilities and/or chronic illnesses as well as promoting the spirit of allyship at your institution.
To become an MSDCI chapter, check out the MSDCI website (www.msdci.org) and/or contact the MSDCI leadership board. MSDCI also has resources and guides to help you start a chapter from scratch at your institution. You are also always welcome to join MSDCI as an individual.
As I transitioned from the preclinical to clinical years, I had a lot less time to devote to my extracurricular passions. I wanted to make sure that the student advocacy group would continue to grow and stay active in the community, so I transitioned leadership to two invested preclinical students at the beginning of my third year. It is vital to include younger students in advocacy to not only foster comradery and collaboration, but to ensure the longevity of your hard-earned successes.
I joined MSDCI as a third-year medical student, and wish I could have joined earlier! There is exciting momentum in disability advocacy at the national level and countless opportunities for mentorship, education, and activism. If you have a relatively small, tight-knit disability community at your institution like I do, joining a national network and engaging with students from around the country is invigorating and galvanizing. National networks open to students include MSDCI, as well as Disability Advocacy Coalition in Medicine (DAC Med) and the Alliance for Disability in Health Care Education (ADHCE).
Advocacy is uniquely exhausting. You may feel demoralized and frustrated, as I did, by a lack of progress. There may be times you are wronged by faculty and experience stigma and discrimination because of this work. You may be uncertain about how to proceed, or feel like you may be asking for too much. But change is wrought from hardship. All physicians, regardless of their specialty, will care for patients with disabilities and must be prepared to meet their needs. Advocating for disability training at all levels of medical education is key to prevent and mitigate health inequities for patients with disabilities and promote disability consciousness. Take pride in your advocacy and your dedication to this human rights and social justice issue. Advocacy necessitates empathy, perseverance, and resilience. Practice polite persistence and continue to push for much-needed change. Know that you have allies, MSDCI included, to support you every step of the way.
1. Seidel, E., & Crowe, S. (2017). The state of disability awareness in American medical schools. American journal of physical medicine & rehabilitation, 96(9), 673-676.
2. Doebrich, A., Quirici, M., & Lunsford, C. (2020). COVID-19 and the need for disability conscious medical education, training, and practice. Journal of Pediatric Rehabilitation Medicine, 13(3), 393-404.
3. Alliance for Disability in Health Care Education. (2019). Core Competencies on Disability for Health Care Education. Peapack, NJ: Alliance for Disability in Health Care Education. http://www.adhce.org/
