Invincible vs Invisible: flipping the narrative on disability in academia

Last year, I had 68 doctor’s appointments.

I have an invisible condition, Ehlers-Danlos Syndrome (EDS), that results in defective connective tissues, the glue that holds our bodies together. Thus, everything in my body is affected; my musculoskeletal, cardiovascular, nervous, gastrointestinal, and integumentary systems all succumb to the fate of my mutation.  I experience dislocations, heart palpitations, tachycardia, loss of appetite, acid reflux, delayed wound healing, bruising, migraines, pain (a lot of pain), and so much more on a daily basis.

Despite these extensive symptoms, it took six years to receive a diagnosis. While tests like EMGs (electromyography) can be used to assess muscle function, there are currently no medical tests to understand the functional impact of connective tissue disorders; it is easy for doctors to dismiss your symptoms, when you look like a “healthy” 19-year-old. During my diagnostic odyssey, I realized that there were huge gaps in knowledge surrounding the etiology and downstream (tissue specific) consequences of mutations in genes that sustain the extracellular matrix (ECM). Curiosity and frustration from medical dismissals and lack of viable treatment options fueled by motivation and passion to dedicate my life to studying the ECM. After all, who better to study mutations in connective tissues than someone who lives with the physical, social, and economic consequences of it every day? This is precisely why I decided to pursue a PhD in Genetics.

I am now in my fourth year of graduate school, and while extremely taxing, I do not regret pursuing this path. My motivation and passion sustain my interest and dedication to science. However, motivation and dedication are meaningless without accessible, supportive environments that allow me to pursue my work. Part of creating this environment is becoming aware of the experiences of disabled scientists and supporting us by creating lab spaces, equipment, and policies that are inclusive. Disabled scientists are an asset to the scientific community. We are resilient, creative, and provide unique perspectives. Yet, there are still many obstacles to our inclusion in STEM. Inclusion and change cannot happen without first knowing how to improve the current environment and we can only learn this information by engaging with disabled scientists. I have decided to share aspects of my experiences as a physically disabled scientist with the goal of sparking conversation, challenging stereotypes, and motivating the pursuit of inclusive change in academia. Importantly, my experiences are my own and I do not speak for other disabled scientists. Below, I share what I believe are the most important aspects of the physically disabled scientist experience for all of those who work in academia to know about.

Living with an invisible disability is a privilege (and a nuance).

My physical disability is invisible. To most, I appear to be an average 26-year-old woman, but ask me to press the elevator button and my finger might dislocate. Being invisible has its advantages; I pass as an able-bodied individual, so I am not subject to overt discrimination, stereotypes, or the never-ending stares that individuals with visible disabilities endure. But my invisible disability is a double-edged sword. When I disclose my physical disability, I must always brace myself for the immediate invalidation that follows, usually to the well-intentioned tune of “but you don’t look sick”. It is emotionally and mentally exhausting to repeat this process. Ingrained societal stereotypes about what disability “looks like” means that many individuals with invisible physical disabilities are not considered “disabled enough”. In diversity-based grant applications, invisibly disabled scientists must strike a delicate balance and convince the reviewer that they are disabled enough to be worthy of the grant, but not too disabled so that confidence is not lost in their ability to pursue the proposed work. In the lab, it is easy for colleagues to forget about accessibility for individuals with invisible disabilities, perhaps because the visible reminder is not there. When accommodations are forgotten, disabled scientists must do additional work to receive their accommodations. This is often perceived as continually asking for “help” or “favors” instead of a necessary, guaranteed right. 

Living with a disability requires creativity.

Scientists with disabilities must be creative in how they adapt their environment to their needs. One avenue is to request accommodations through human resources (HR) and while this can be helpful for standard needs (i.e. accessible doors), HR cannot provide adaptive lab equipment that does not exist. It is here that the innovative nature of disabled scientists shines. I created #labdaptations (lab-adaptations) on Twitter, not only to start the conversation surrounding physical disabilities in STEM, but more importantly to share what I have done to adapt to the lab space. After a few posts went viral, it was increasingly clear that my tools were being shared by both disabled and able-bodied scientists. This is the beautiful thing about accessibility; it benefits everyone. If the standard lab bench were height adjustable, this would not only benefit individuals who use a wheelchair, but also scientists who are not of average height (i.e. if taller than average, the bench could be raised to avoid hunched posture). Ergonomic pipettes and dissection tools benefit every user, not just those with dexterity impairments. But our creativity is even broader and is present in the very essence of how we work. We must continually solve puzzles and adapt work schedules to meet our physical needs. If you have varying, unpredictable symptoms like me, the day-to-day decisions are like a game of Jenga; one wrong move and the tower collapses.

Living with a disability is expensive.

In December of 2020, I submitted my application for the F31, a National Institutes of Health (NIH) funded pre-doctoral training fellowship. When I received the news that my F31 would be funded, I cried. Not because I was happy or proud, but because I was relieved. Government funding meant I could afford to stay in graduate school. Government fellowships cover segregated fees, which constitute ~5% of my stipend and each year I allocate roughly ~10% of my stipend to necessary medical care; I could not afford to do both. The financial expense of training disabled graduate students extends into the lab space. At my institution, graduate students in the lab are considered employees (vs students). Therefore, any accommodations that are needed must be funded by the PI. This additional expense placed in the lab creates an uncomfortable system where disabled students must not only disclose their needs to their PI, but also heavily rely on the PI to provide this equipment. Perhaps this system, unintentionally, disincentivizes PIs to mentor students with disabilities.

Living with a disability is time consuming.

I truly believe I owe my current success as a graduate student to my keen ability to manage my time efficiently. What many do not realize is that this skill is a survival mechanism. Maintaining my health is a full-time job that requires so much of my time and energy. I need additional time to execute experiments that are physically challenging for me. I need time to see my physicians and to travel to and from those appointments (not to mention re-establishing medical care after moving to a new city). Most importantly, I need time to care for my body, physically and emotionally. Unless you are a close friend of a disabled individual, these necessary time allocations may not be obvious, but are an important part of understanding the challenges associated with having a physical disability in STEM.

Living with a disability is isolating.

The history of disability in America is gruesome; eugenics, forced sterilization, and “ugly laws” made integration into academia and society difficult, if not impossible. The ADA (Americans with Disabilities Act), which prohibits discrimination against people with disabilities, was only passed in 1990. It should, therefore, not be a surprise that finding a disability community in STEM is challenging, yet essential to feel included. We see that disabled undergraduates have the same intent to major in STEM, but these degrees are not being received at the same rate as able-bodied peers. This speaks to the dire need to create and foster the scientific disability community at the undergraduate level. In an effort to build this community, a friend and I co-founded CHAMP (Chronic Health Allies Mentorship Program). In this program, undergraduate students who have chronic health, illness, or disability are matched with graduate student mentors, who share similar experiences, to create a one-on-one mentorship experience. Graduate student mentors work to instill self-advocacy skills, confidence, and promote feelings of belonging in their mentees. Nearly all the graduate student mentors in the program (~30) noted that they would have benefitted from a program and community like this during their undergraduate studies.

Living with a disability has made me a better person and scientist.

The decision to publicly identify as a physically disabled person was a risky one. Many will choose to see how I am limited by my disability, instead of seeing how it makes me a better person and scientist. My disability has made me more empathetic; young and old people alike come to me to talk about their health ailments. For young people especially, I am a sanctuary, one of the few people of similar age who understands how they feel. I work more efficiently than many of my peers, allowing me to make time for both my science and health. I am creative in how I approach scientific problems and questions, providing a plethora of new ideas and hypotheses. As I have grown more confident in my identity, I have become a stronger, more motivated, and dedicated advocate. I want to help create an accessible academic environment where scientists with disabilities not only feel included, but also feel as though they can thrive. Creating this change starts now—Reader, learn about your institution’s accommodations and disability policies, engage with the disability community, and actively start working to change discriminatory barriers. We all must work together to make this change happen.

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