As a disabled scientist, I must balance my research and health. I live with chronic pain and have to manage my spoon levels, or mental and physical energy I have, from day to day. I have spent nineteen years in undergraduate studies where a thesis is all I need to complete my bachelor’s degree in human health psychology at the University of California San Diego (UCSD).
Little did I know when starting lab work at UCSD that I was also starting down the path of advocacy. For example, there was a point when I requested a low-pressure pipette. Sadly, I never received a different pipette, and working at the bench never became accessible for me, but I did get better at advocating.
I successfully taught myself how to engage in systematic reviews by learning how to leverage UCSD’s Systematic Review Service. Now, as a project manager of two research teams, I have four reviews in progress and won the Undergraduate Library Research Prize.
I discovered my voice and continued to pursue advocacy on campus- and system-wide levels as an Underrepresented Student Officer for the University of California Student Association. At one point, I was told that I was doing too much advocacy and should just focus on research. But I ignored this advice and followed my heart, and I was honored to win the 2020 Inclusive Excellence Award at UCSD.
During my undergraduate years, I followed my principal investigator (PI) into the Twitter-verse, where I found other disabled students and researchers. I was excited to finally have a community and ultimately co-founded Disabled In Higher Ed on Twitter, a community of 7,317 people and counting.
After experiencing medical trauma last year, I only applied to a few graduate programs. I received the puzzling feedback that they didn’t know if I was more interested in research or advocacy. This still feels like a false choice to me: why should I be forced to pick one or the other? Research and disability advocacy can and do coexist.
Gaining true accessibility requires each disabled student to advocate for their needs, so that they can do the science they are passionate about. This advocacy is only the beginning of the journey as students need supportive leadership. Existing attitudes must change where responsibility is placed on the student to find funding and research proper accommodations. Their doctors, disability office, program/administration, and PIs are also responsible for accessible lab spaces, otherwise ableism results, and applies at all levels for disabled scientist.
Disability advocacy on a CV is not a weakness or a distraction; it is a strength to be harnessed. Each person who engages in disability advocacy has a network and knows how to deliver information to that network. This skill is evidence of our ability to disseminate academic research and use our network to generate opportunities furthering our scientific work. In fact, getting into programs or obtaining grants require self-advocacy. Let’s end the stigma that advocacy skills are not valuable.
Syreeta Nolan is a disability justice advocate. She serves as co-founder of Disabled in Higher Education on Twitter, as founder of JADE (Justice, Advocacy and Disability Education), and as a board member of Health Advocate X. She will earn her bachelor’s in human health psychology from the University of California San Diego later this year and plans on pursuing a PhD in health or public policy. (Photo and Graduation Cap Design Credit: Jen White-Torres)