by Alexandra Capellini
A year and a half ago, I sat in a lecture hall with more than one hundred of my medical school classmates, listening to a panel of patients speak about their experiences as wheelchair users. The purpose was to give my class an opportunity to learn about the lives of patients who spend most of their days in wheelchairs. These patients were not ill, nor were they being actively rehabilitated for anything that was wrong. They were healthy patients whose modes of mobility were simply different than most of ours.
As an amputee, I have been mindful of how medical schools teach students about disability. Because of my personal experience, I feel better prepared than most of my peers. Throughout my hospital rotations, I have felt particularly drawn to patients who have disabilities. After all, when I step out of my doctor-in-training role and attend my own doctors’ appointments, I am right there with them.
But what about my classmates? What do I want my medical school to teach them about patients like me?
During the panel, the speakers recalled their experiences navigating a public transit system that’s not designed for wheelchair users, and how this can limit where they travel. One panelist described what sexual pleasure means to him as someone who is paralyzed from the waist down. Another spoke about the challenges he faces in speaking with a delay, and finding recreational sports opportunities to pursue. As I sat in the lecture hall, listening and absorbing all that I could, something dawned on me: This was the only way my classmates were ever going to learn about disability.
As medical students, we spend many hours, day after day, month after month, learning the mechanisms of disease processes that target every part of the human body. We don’t spend nearly as much time learning about the lived experiences of our patients. And that makes it difficult to communicate effectively when we encounter patients with disabilities. Do my classmates know common ways that amputees alleviate chronic back pain? Do they know to inquire about our access to mental health resources? Do they know why dermatology is a common referral for us? Or how to ask about prosthetic function?
Medical school students get extensive training in how osteosarcoma is diagnosed, imaged, and treated. We should also have opportunities to speak with osteosarcoma survivors: What do physical activity, mental well-being, and recreation look like for them? How do they define and achieve a high quality of life?
Medical students learn how the nervous system functions in patients with paralysis. We should also know how to speak knowledgeably with these patients about sexual intimacy, fitness, and body image, which are important to overall health for everyone. How do people with spinal injuries meet these universal needs, and how can doctors support them?
Medical students understand how rod cell dysfunction can affect patient’s vision. We should also understand what living with a spectrum of vision disability actually means. How do these patients interact with their surroundings, and how does that affect their comfort levels in new settings?
For medical students to care effectively for their future patients with physical disabilities, knowing the mechanisms of illness and injury is not enough. We also need to learn how amputees cope with phantom limb pain, why it’s important to speak at eye level to someone in a wheelchair, and how people with visual impairments navigate the world.
Some argue that these details go beyond the scope of what physicians must understand. I disagree. If quality healthcare means meeting patients where they are and tailoring recommendations to each patient’s preferences and values, then medical students have to understand the factors that uniquely affect the daily lives of people with disabilities. We need to know what challenges they face, but we also have to recognize their full range of capabilities. We need to be prepared to ask relevant questions about fitness, recreation, travel, education, work, romance, and sex. And we need to help our patients make good choices and find the right resources regarding home accessibility, mental health support, physical exercise, and assistive technology.
There is so much more to know about disability beyond diagnosis, treatment, and “How are you doing?” Medical schools also need to let physicians-in-training hear more narratives from people with disabilities. Let us listen to them. Let us learn from them.
Alexandra Capellini is a medical student at the Icahn School of Medicine at Mount Sinai in New York City.