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Raising visibility for people and students with chronic illness and disability

"Medical students are uniquely positioned to open the door to this discussion about disability and chronic illness," argues Stanford med student Claire Rhee.

Last year, during her first year of medical school at Stanford, Claire Rhee underwent knee surgery. The months of recovery that followed helped her see from a new perspective: how difficult life as a medical student can be when you are not able-bodied. That spring, Rhee and her roommate, Maïté Van Hentenryck, also a first-year medical student, turned lemons into lemonade, launching an advocacy group for medical students with disability and chronic illness.

As a baby, Van Hentenryck had suffered from meningococcemia, a rare form of meningitis. The infection resulted in the loss of her right leg and in other orthopedic issues. Her early experience with medicine inspired her to pursue it as a career.

Individuals with disabilities and chronic illness are not frequently found in the profession of medicine, but have the potential to be unique advocates and role models for patients and other aspiring physicians and nurses. Authors of an article in the October 2016 AMA Journal of Ethics noted, “Although about 20 percent of the US population has a disability, only 0.56 percent of medical students who were enrolled between 2001 and 2010 had a physical or sensory disability at matriculation.”

I talked with Rhee about how she hopes to change that.

What inspired you to start the group for medical students with chronic illness and disability?

Seeing how many microaggressions Maïté had to deal with on a day-to-day basis and spending a good part of my first year on crutches, I realized how ableist medicine can be. As an activist undergrad at Brown, I had debated race relations, socioeconomic status, gender, LGBTQ rights, and more, but never once encountered a debate about ableism. Even at Stanford, where I’ve organized events for and recruiting first generation students, Asian American students, LGBTQ students, etc., I realized there's no space set aside in the community for students with chronic illness or disability. For many people with disabilities, just living with disability can be so exhausting that it leaves them very little room for advocacy. Medical students are uniquely positioned to open the door to this discussion about disability and chronic illness — to consider how we will be treating patients who might have gone through the same things we have, or that a family member has, and how that affects (in both good and bad ways) our ability to provide care. I wanted to be sure that there was a forum for those conversations at Stanford.

Do you mind sharing what your disability is?

In the long term, I've struggled with mental illness for over a decade. It's been a really poignant discussion at the medical school and I've been lucky to find people to support me through all of it. In the short term, the ableism became more evident last year when I had a knee injury and then a foot injury and then another knee injury that left me on crutches for the better part of MS1 [first year of medical school]. You don't notice how quickly people walk during rounds or how very few places in the medical school are accessible until you can’t keep up anymore.

Eric Sibley, MD, PhD, professor of pediatric gastroenterology, who uses a wheelchair to accommodate his symptoms from primary progressive multiple sclerosis, agreed to be the faculty advisor for your group. How important/valuable is it to you to have a faculty advisor for your group who has a chronic illness/disability? And why?

I think it’s incredibly valuable for a variety of reasons. One of the biggest reasons is to just know and see that with a disability or chronic illness you can succeed in this profession — this is a common theme throughout all advocacy, but seeing people you can relate to in positions of power lessens the self-doubt a little bit more. On the practical side, it gives the group a lot of legitimacy, especially when applying for official university recognition. It also gives us an invaluable resource — as experienced as we might be in living with chronic illness or disability, we have yet to see a lot of how it interacts with healthcare on the provider side. Having Dr. Sibley there as a resource to provide insight on this will help us be more thoughtful in the future, and will give us the guidance to be maximally impactful.

Why is this group important? In other words, what impact do you hope to have?

I think, given the current status of advocacy for people with chronic illness and disability, the best we can hope for in the short term is to raise awareness — to make people realize how harmful it can be to walk too quickly, to make offhand jokes about injuries or mental illness, and to see how little things they can do in their day-to-day life can help so many people. The visibility for people and students with disabilities and chronic illness is lacking, and I hope that this can be the first step to minimizing ableism in our society and in medicine. In a more specific sense, we'd want to create a community for students with disabilities and chronic illness, and to give all students at the medical school a chance to process the personal and emotional challenges of medicine.

To sign up for information about the student group for chronic illness and disability, contact stanfordmsdci@lists.stanford.edu or email Claire Rhee to get in touch with the group.

Photo by Ariel Pilotto

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