Teach MEDisability with Leah Crawford

Earlier this fall, Leah Crawford, a disabled medical student from Colorado, reached out to SRNA asking for help in spreading the word about a very special project: Teach MEDisability. 

As someone with achondroplasia dwarfism, Leah is passionate about inclusivity for disabled people within the medical school community, and was more than happy to answer some questions for us in this week’s blog. 

Leah, thank you so much for sharing with us about the Teach MEDisability project! Can you go into more detail about what the project is?

L: Teach MEDisability is at its core an online photo collection. Organizations and individuals fill out photo release forms for themselves or their children that show the features of a given disability outside of the medical context. The idea of this is to show people with disabilities as whole people, not just the top item on their problem list. The photos people have submitted so far are amazing! In early August, parents were submitting lots of “back to school” photos. I have photos of people playing sports, hanging out with their families, posed photos, candids, annoyed teenagers, everything. All together, the photos show a full spectrum of life with a disability, and how it is so much more than that. The hope is that medical science lecturers will start to use these photos in their lectures to teach about the disabilities, and that while medical students will still need to learn that achondroplasia is caused by a gain-of-function mutation in the FGFR3 region of chromosome 4, they’ll also see a kid at the children’s museum playing with bubbles who just happens to have short stature, frontal bossing, and trident hands. 

When did you first become aware of the need for more inclusive photos of people with disabilities in medical programs? How did those experiences make you feel?

L: In the spring of 2022, my class was to be given a lecture on skeletal dysplasias, the umbrella under which achondroplasia falls. I previewed the slides and was disappointed with what I found. While all the scientific and medical information about achondroplasia was correct, the photos that accompanied the information left something to be desired. There were several photos of Peter Dinklage, then many photos of kids or adults with their eyes blacked out in doctor’s offices, and only one photo of a kid with achondroplasia who was smiling. This smiling photo was on an advertisement for a recently available “treatment” for achondroplasia that is super controversial and has disputed efficacy. To me, this felt problematic. I reached out to the lecturer to see if they would be willing to use some other photos of people with achondroplasia who were outside of doctor’s offices and smiling, but they said that they didn’t have the permission to use any photos like that. From that interaction, this project was born. The lecturer ended up taking out all the photos of people in doctors’ offices and with their eyes blacked out and replaced them with more photos of Peter Dinklage. Not ideal, but I guess better than nothing? From this experience, I felt frustrated, but also energized. This felt like a concrete problem that someone could really do something about. If the primary problem is that lecturers don’t have the necessary permissions to use more true-to-life photos, why don’t we provide the photos with permissions included?

Can you tell us a little bit about yourself? What sparked your interest in pursuing a medical degree?

L: There are people who have known for their whole lives that they would grow up to be doctors. That wasn’t me. I took an anatomy and physiology class in my junior year of high school, which decided that I would major in Human Biology in college. In my junior year of college, I started volunteering at an Early Childhood Education (ECE) program that was connected to the local women’s shelter. It was an incredibly low resource setting with just the best kids and families. I realized at the end of that semester that doing half science and half working with kids had been my busiest and happiest time in college. From that conclusion, though many others could have been drawn from the same data, I decided that a great way to combine my two passions was by pursuing pediatric medicine. Like I said above, I think that I’m headed for pediatric primary care because I love the idea of preventative medicine and longitudinal relationships with families, but mostly, when I think about what the world might bring for the next generation, what comes to mind is the Mister Rogers quote about “look[ing] for the helpers.” I think that everyone has a passion or skill set that can be built upon as they become one of those helpers. I hope this can be mine.

Why does perception of disability matter when it comes to medical professionals/providers?

L: The thing about medical providers is that we like to fix things. Blood pressure too high? First line, diuretic. Still too high? Beta blocker. Still too high? You get it. Doctors tend to have a schema running in their head for any diagnosis that walks through the door before it does. Disability throws a wrench in that. When you can’t cure, you manage. But manage to what end? And what does manage really mean?

In some cases, with some doctors, the disability becomes the only part of a person that they can see. If there is any acute concern in a patient, the first thing that the doc comes back to is their disability. Even once the disability is ruled out as a cause, it still informs the thought process, and treatment. In the movie “Crip Camp” (on Netflix, highly recommend), a woman with cerebral palsy tells the story of going to the ED with pelvic pain and being whisked off to the OR even though her appendix wasn’t inflamed on ultrasound, to have the appendix removed. The surgery didn’t resolve her pain. Sometime later, it was discovered that she had gonorrhea. No one thought to do an STI test. No one did a pelvic exam. No one thought that she could be having sex because she was disabled. This is a classic example of medical perception of disability causing harm. There are also the atrocities of forced sterilization in women with intellectual disability, and other examples that showcase how autonomy and the diagnostic schema that would run for anyone who doesn’t have a disability get thrown out the window. 

Therefore, the way that future medical professionals are taught about disability matters because I hope that if I present to the ED someday, they not only consider the conditions endorsed by my disability, but the ones they would consider for anyone else.

Who is involved in the project?

L: Right now, the people working on the project are limited. I’m reaching out to organizations to gauge their interest and ask for their help in collecting photos. Then I put the photos on the photo collection website that is accessible only to those with credentials at my school. I have a mentor who is an MD and wrote the disability curriculum for the medical school. And, more recently, a few of the medical science content directors have started helping me to promote the project for use by lecturers in their content areas. But those are only the people who have actively worked on the project. We have had several organizations that joined to spread the word and recruit people to submit photos (thank you, again, SRNA!), and nearly 50 total photo submissions as of this morning! As the photos start being incorporated into lectures, more students will be involved as they are taught a different perception of disability than those who came before, and I’m hoping that a few students want to get super involved in the project to keep it going after I graduate! 

What are your thoughts on the idea that disabilities are “problems that need to be solved”?

L: There is a tendency in the medical setting to see patients as a collection of problems. We have something in each patient’s chart called the “problem list” that delineates the current factors impacting the patient’s life. Some of the items on these lists aren’t problems at all. For example, I wrote a note yesterday for a baby check-up where the two problems on her list were “well child check” and “parent with anxiety about baby.” Not problems, just things that are happening in her life. So, in this way, disability is a “problem” because it would be on my list. But it is more complicated than that because it’s also a part of how I identify. 

My personal philosophy aligns with the social model of disability, that many parts of disability are only a problem because the world makes them disabling. Of course, there are symptoms of disability that require treatment. For example, chronic pain needs to be treated and elevated intracranial pressure needs to be relieved. But if it is going to create greater risk or more harm to have a go at the underlying cause (or more often phenotypic effect), just because we can fix something doesn’t mean we should.

What kind of impact or outcomes do you hope the Teach MEDisability project will have?

L: The demographics of the people who go into medicine are changing already. My class is 55% female, and 18% LGBTQ+, 27% are from backgrounds underrepresented in medicine, and there is more that needs to be done. On our applications, 2 of us disclosed physical disability. To me, that suggests that the population who gets to medical school, may at least be unfamiliar with disability, and that their first exposure to many conditions will be in the medical school classroom. My hope is that by changing the photos that accompany the text, future students will walk into the clinics with a perception of disability that is different from providers that came before. Maybe they will understand that the lives of those individuals and families don’t solely revolve around disability, that sometimes complications associated with the disability pop up and need treatment, but that the condition itself doesn’t need to be “cured,” and that the teenage girl who presents in the ED with pelvic pain needs an STI test before they rush to the OR to take out an appendix that isn’t inflamed. 

My biggest hope for Teach MEDisability is that someday it can expand beyond my school. I’d love for the pictures to be used by other medical schools so that future doctors have more positive perceptions of disability, and by extension, people across the world with disabilities will receive better care.

How can others get involved? Can those with “invisible disabilities” support the project?

L: First, I want to say it loud, invisible disabilities are disabilities. Us with the very visible disabilities often get more attention and for some reason people, including medical professionals, tend to “believe” us more when we come to them with concerns. This pattern is awful and needs to change and I’m sorry. For that reason, I hope that those of you with invisible disabilities will also submit your photos. While there won’t be any “diagnostic physical findings,” there’s an important point to be made there. Disability can and does look like anything and that doesn’t make it any less impactful or any less real. 

As for involvement, the best thing that anyone can do is spread the word. Please feel free to share the link with anyone you know. Send it to your mom so she can give it to her bridge club, your aunt, your former teacher, anyone! In this photo collection phase of the project, the real challenge is reaching people who might like to submit a photo, and I am so grateful to anyone who is able to help with that.