10 Scientific American, September 2019FORUM
COMMENTARY ON SCIENCE IN
THE NEWS FROM THE EXPERTSIllustration by Samantha MashDisabilities
Make Us Better
Scientists
But the research world raises barriers
to our full participationBy Gabi Serrato Marks and Skylar Bayer
Starting a science graduate degree was one of the most excit-
ing things to happen to each of us. We also knew that graduate
school would be particularly difficult. Skylar has a heart condi-
tion called polymorphic arrhythmia and has an implantable car-
dioverter defibrillator that ended her scientific scuba-diving ca-
reer. 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 de-
signed to accommodate scientists with medical conditions or dis-
abilities. 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 proj-
ect 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 con-
dition, 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 dif-
ferences. A research assistant we know who has obsessive-compul-
sive disorder (OCD) finds that some of her compulsions are useful:
Her attention to detail gives her a clear memory and a sharper re-
call of academic papers than most scientists have. She also is excep-
tionally 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 ent-
omologist at the U.S. Department of Agriculture and president of
the Foundation for Science and Disability, has had similar ex-
periences. 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 wide-
ly for fieldwork for more than 40 years, carrying light backpacks
and collaborating with other scientists who can transport equip-
ment. Next, he is headed to the Ecuadorian cloud forest to study
fruit flies. Mankin says his dis ability often results in “low expecta-
tions 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 stu-
dents 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 inst i-
tutional 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 success-
ful scientists because of our health. But now we know that those
of us with disabilities, differences in thinking, and medical chal-
lenges are well suited for scientific careers—as long as those ca-
reers are made as accessible to us as they are to everyone else.JOIN THE CONVERSATION ONLINE
Visit 2_w²í_Ĉ¬wÞ_C² on Facebook and Twitter
or send a letter to the editor: [email protected]Gabi Serrato Marks
is a Ph.D. candidate
in the MIT-WHOI
Joint Program in
Oceanography and
a patient advocate.Skylar Bayer is an
NRC postdoctoral
research associate
at the NOAA’s
Northeast Fisheries
Science Center.