Starting a graduate degree in science was one of the most exciting things to happen to either of us. But while we knew that graduate school would be difficult, both of us experienced medical hurdles early in our PhD programs that we never expected. Skylar has a heart condition, polymorphic arrhythmia, and had an implantable cardioverter-defibrillator inserted that ended her scientific scuba-diving career. Gabi has Ehlers-Danlos Syndrome, a collagen disorder that causes widespread pain, especially during lab and field work.
While our medical conditions have challenged us in different ways, we both have noticed that scientific research is rarely designed to accommodate scientists with medical conditions or disabilities. That could be understandable if we were part of a tiny group, but around 26 percent of adults in the United States have a disability. Scientists with disabilities have so much to offer: we have diverse, creative and unique ideas that are important for pushing research forward. We, along with other scientists with disabilities and medical conditions, have found success in our careers, but only because we have had access to health care, emotional support and institutional backing.
In fact, we feel that we can be better scientists because of our challenges, not in spite of them. When Skylar couldn’t scuba dive for her field research anymore, she could still design dive plans and carry out other aspects of fieldwork as well as laboratory work and computer modeling. She focused heavily on project management, a skill that will serve her throughout her career. Ehlers-Danlos syndrome is rare, so explaining the condition frequently has honed Gabi’s science communication skills. Consequent to her condition, she’s also hyperflexible, which comes in handy when she needs to squeeze into tight spaces in caves during fieldwork. More importantly, we both have learned how to advocate for ourselves and persevere through challenges, both in our health and our research.
We’re not the only ones who see benefits that come from our differences. Some people with mental illness and neurodivergence have found that thinking differently can be helpful in their roles as researchers (though we note that not everyone with a mental illness or neurodivergence identifies as disabled). For example, one study found that autistic traits were linked to new idea generation and creative problem solving, and there has been extensive research on bipolar disorder and creativity.
A research assistant with obsessive compulsive disorder (OCD), who asked to remain anonymous, sees that some of her compulsive behaviors are useful in the lab: she always makes sure that the lab freezer is closed and her workspace is clean. Her attention to detail also gives her a very clear memory, which “comes in handy when citing literature,” she joked.
Nonetheless, we are only able to use our creative skills when we are healthy enough to do research. Both of us have found that we have to be particularly vigilant about making sure our access to health care and health insurance is consistent and supportive. We have become acutely aware of both the financial and time costs of visiting specialists regularly, and the emotional weight of making decisions with our health in mind.
Richard Mankin, an entomologist at the U.S. Department of Agriculture and the president of the Foundation for Science and Disability, has had similar experiences in academia. He was born without certain muscles in his legs and uses crutches to get around, but his condition didn’t start to impact his mobility severely until the end of graduate school. At the time, he didn’t think he really needed a support system, but now says that supportive colleagues and friends pushed him to get the help he needed with his mobility. He gravitated towards working for the government because of the stability in health care it offered.
Mankin long feared an early death because disabled individuals in the U.S. are likely to die at a younger age than those without disabilities, so health care access has been extraordinarily important to him throughout his life. He has also made lifestyle decisions for his health, like moving to Florida, where the warm climate allows him to walk for at least an hour every day.
Mankin travels around the world with collaborators to remote locations; this July, he’s headed to the cloud forest of Ecuador to study fruit flies. “To travel more effectively, I learned to travel light (with a backpack—no suitcases),” he writes. He relies on collaborators to transport bags or equipment in the field but has been able to do field work for more than 40 years. He was supported by mentors early in his career.
However, unrelenting hard work is what has made him successful, he says. Mankin says that his disability has often resulted in “low expectations from persons who did not know me well and assumed my disability causes reduced levels of productivity.” He feels that he’s had to work extra hard just to show he’s capable of being as successful as a scientist without disabilities.
Although the ADA provides legal protections for disabled people, accommodations are just one part of the access puzzle. We have been able to stay in our positions (as a postdoc and PhD candidate, respectively) in part because we have understanding mentors, colleagues, and friends. When support like that is missing, disabled people might end up leaving academia altogether. Hundreds of tweets posted with the hashtag #WhyDisabledPeopleDropOut illustrate what can happen when talented students don’t receive the accommodations that they need. When people leave STEM because of discrimination or poor treatment, science suffers.
True access goes beyond legal requirements; it involves thoughtful dedication to creating a culture of inclusion and understanding of all disabilities that allows everyone to perform at the highest level. The researcher with OCD, for example, said that part of the challenge of living with a mental illness is the lack of understanding. “My OCD diagnosis becomes confused with my personality and my identity,” she wrote. “I don’t want to be viewed as someone who just obsesses over things and worries.”
That stigma is why she chose to remain anonymous. Moreover, it’s hurtful when people joke about having OCD when they’re simply cleaning or working carefully. Those types of comments “make OCD out to be a preference, rather than a disorder that affects all aspects of someone's life.” This is where allies can come in: if you want to foster an environment that includes disabled scientists, don’t make jokes about real disorders.
Furthermore, allies should be sure to include disabled scientists at all levels. Mankin feels that his disability has enforced some barriers to leadership opportunities, having been turned down several times for manager positions. He feels a responsibility to be a role model to encourage students with disabilities to go into science. But he says science has become more competitive, so he worries about how discouraged some folks with disabilities may be, especially without better support systems.
We are expected to work extra hard to fit into the current academic culture, so we expect similar effort from institutional leaders to think beyond legally required accommodations and support all scientists. Both of us are hopeful that inclusion will improve in the future, reducing barriers for anyone with conditions like ours. We remember being terrified that we couldn’t be “successful” scientists because of our health when we were first diagnosed. But we now know that there’s more than one kind of “successful” scientist, and that those of us with disabilities, differences in thinking, and medical challenges are well-suited for rich scientific careers—as long as we have true access.