Starting a science graduate degree was one of the most exciting things to happen to each of us. We also knew that graduate school would be particularly difficult. Skylar has a heart condition called polymorphic arrhythmia and has an implantable cardioverter defibrillator that ended her scientific scuba-diving career. Gabi has Ehlers-Danlos syndrome, a disorder that weakens the protein collagen in her body and causes widespread pain.
Although our conditions challenge us in different ways, we are able to cope and function at high levels. But as we have continued in our careers, we have learned that the research world is not designed to accommodate scientists with medical conditions or disabilities. The frequent barriers could be more understandable if we were part of a tiny group, but around 26 percent of U.S. adults have a disability. Scientists with disabilities have creative and unique ideas that are important for pushing research forward, provided we have access to health care, support and institutional backing.
We can be better scientists because of our challenges, not in spite of them. When Skylar could not scuba dive anymore, she could still design dive plans. She improved her abilities to carry out laboratory work and do computer modeling. She focused on project management, a skill that will serve her throughout her career. Ehlers-Danlos syndrome is rare, so explaining the condition has honed Gabi's science communication skills. Because of her condition, she is hyperflexible, which comes in handy in caves during fieldwork. We have learned to advocate for ourselves and persevere through challenges, both in our health and in our research.
We are not the only ones who experience benefits from our differences. A research assistant we know who has obsessive-compulsive disorder (OCD) finds that some of her compulsions are useful: Her attention to detail gives her a clear memory and a sharper recall of academic papers than most scientists have. She also is exceptionally careful about procedures—always sure, for instance, that the lab freezer is closed, avoiding a common mistake that has ruined many experiments in numerous institutions.
But we must spend extra time and money taking care of our health, and that can hamper our careers. Richard Mankin, an entomologist at the U.S. Department of Agriculture and president of the Foundation for Science and Disability, has had similar experiences. He was born without some muscles in his legs and arms and uses crutches for mobility. He gravitated toward government work because of the stability it offered. Mankin has traveled widely for fieldwork for more than 40 years, carrying light backpacks and collaborating with other scientists who can transport equipment. Next, he is headed to the Ecuadorian cloud forest to study fruit flies. Mankin says his disability often results in “low expectations from persons who did not know me well and assumed my disability causes reduced levels of productivity.” He feels he has to work harder just to show he is equally capable of success.
Although the Americans with Disabilities Act provides legal protections for disabled people, accommodations are just one part of the access puzzle. True access goes beyond legal requirements—it involves a culture of inclusion that allows everyone to perform at the highest level. The researcher with OCD said that part of the challenge of living with a mental illness is the stigma. “I don't want to be viewed as someone who just obsesses over things,” she wrote in a private communication. Mankin has been turned down several times for manager positions because he is not viewed as a leader. He wants to be a role model and encourage disabled students to pursue science but worries about how discouraged some folks may be, especially without better support systems.
We work hard to fit into academic culture, so we ask institutional leaders to think beyond legally required accommodations and to support all scientists. We hope that science will become more inclusive and lower barriers against anyone with conditions like ours. Initially we were terrified that we could not be successful scientists because of our health. But now we know that those of us with disabilities, differences in thinking, and medical challenges are well suited for scientific careers—as long as those careers are made as accessible to us as they are to everyone else.