Scientific institutions need to work toward a more inclusive environment for disabled scientists. That’s not just because it’s fair, but also because it’s crucial to the scientific enterprise.
While I was applying for grad school in the winter of 2015, I noted that most university websites carry a statement something to the effect of “we encourage underrepresented minorities and individuals with disabilities to apply.” I was elated at how progressive and welcoming this statement sounded as a scientist navigating this world with a life-altering and disabling disease. But I quickly found out that beyond that statement, there was never any support or even mention of providing an inclusive environment for me at any of the universities at which I interviewed. Over the course of my education, one thing has become clear: the topic of disabled students is not talked about enough. We don’t have a voice and that needs to change.
I have an invisible illness—when you look at me, I don’t look disabled. When I was 17 I was diagnosed with fibromyalgia syndrome (FM), an ailment known for chronic pain and fatigue. But those symptoms just scratch the surface of how this disease has transformed my entire life. FM also presents with sleep disorders, irritable bowel syndrome, cognitive disturbances and memory loss, Raynaud’s disease, muscle tightness and stiffness, hormonal dysfunction, anxiety and depression and much more. FM is a very mysterious illness; there are no tests for it and no one knows what’s going wrong or why, let alone how to treat it. I know what it’s like to feel like a helpless patient going from doctor to doctor and test to test, not knowing what’s wrong. I know firsthand the effects of a malfunctioning signaling pathway, and the surprise at being diagnosed so young.
Johns Hopkins (my institution) is part of the Coalition for Next Generation Life Science, a group of universities dedicated to fostering transparency by reporting admissions and matriculation data of PhD students; time to degrees; demographics by gender; citizenship status; and minority status. It does not, however, list the number of students who wish to disclose disability status. When I was applying for fellowships, however, I was proud to see that the National Science Foundation (NSF) reported how many grants were awarded to students with disabilities. In 2012, according to the NSF, 7 percent of graduate students reported a disability. This means they’re underrepresented in the science and engineering workforce compared to the college educated population as a whole. In 2010, the share of PhDs earned by underrepresented minorities in science and engineering was also at 7 percent.
Now in my third year of graduate school, I see many research symposiums, awards, student groups, and fellowships, for diversity through underrepresented minorities—a commendable sight to behold in 2018. But I can’t help but feel forgotten. I have fought tooth and nail to hold onto my dreams and to pursue a challenging advanced degree at Johns Hopkins. I have suffered through unyielding symptoms and unethical judgement or actions from peers or professors and still completed my undergraduate degree.
I did it in spite of all those who said I’d never be able to or cautioned me to put my education off and pursue disability status. I am here against all odds, and I am proud of all I’ve accomplished. I faltered, I struggled, I had moments of doubt and weakness, and I wasn’t able to do all I could if I were healthy, but I haven’t given up. Not a single person around me in grad school knows what this is like, and that’s OK, but it’s also isolating. Through the internet, I’ve connected to other graduate students across the nation who are disabled; they have been my only source of community.
For that I’m grateful, but universities need to step up and do better. Some individuals in disability services I’ve worked with in graduate school have been supportive and advocated for me. My principal investigator is as accepting of my specific issues and challenges as I can expect him to be without knowing what it’s like. But I long for opportunities for all disabled students to shine; I hope for community; I desire recognition that my firsthand experience of disease makes me a valuable asset in biomedical research. My illness contributes to diversity by giving me an advantage and a perspective that’s vital to the scientific community. That background and knowledge should be celebrated and cherished, not ignored. We must ignite discussions on the value of disability in the sciences.
I belong to the physiology department. Those of us who are disabled are the ones who experience for themselves what happens when physiology fails to function as intended. In undergrad, my PI during my summer research program had an autoimmune disease herself. I felt connected to her, comfortable around her, and I valued her empathy. She knew me in a way only other disabled individuals can, and that relationship was meaningful and powerful. She made me realize that we can provide disabled students with a safe and comfortable environment and continue to encourage them and acknowledge their contributions.
Diversity in science is necessary in order to tackle a variety of problems and questions important to a wide range of individuals. Because of this, I feel a calling to use my passion and knowledge long-term to help investigate questions in science to help patients get answers and advocate for such research. I feel I am able to contribute to the graduate school community’s diversity in this manner. So where do I fit in?