The proportion of researchers who report disabilities in grant applications for the US National Institutes of Health (NIH) fell by more than one-third from 2008 to 2018, finds a study. It also determined that applicants who do disclose a disability are slightly less likely to win a grant than are those who say they are not disabled.
The report found that 1.2% of applicants for NIH grants in 2018 reported a disability, compared with 1.9% in 2008 (B. K. Swenor et al. PLoS ONE 15, e0228686; 2020). The authors used data gathered through a request under the Freedom of Information Act. “I think people are under-reporting” their disabilities, says co-author Bonnielin Swenor, an ophthalmologist at Johns Hopkins Medicine in Baltimore, Maryland. “They’re afraid to disclose.” Swenor, who has a visual disability, adds: “We don’t really have a handle on how many people in the NIH funding pool have a disability. How can we know if efforts to diversify the biomedical workforce are working?”
According to a 2018 report by the US Census Bureau, roughly 18% of all people living in the United States have a ‘severe’ disability, a label assigned on the basis of a lengthy questionnaire that covers daily activities, medical conditions and symptoms. The NIH application limits the definition of disability to four main categories, including hearing, visual, mobility and “other”.
Between 2008 and 2018, the average success rate for NIH grant applications in which the principal investigator reported a disability was 27.2%. When the principal investigator did not report a disability, it was 29.7%, a small but statistically significant difference. The success rate for researchers who didn’t answer the disability question was 18.6%.
In a statement to Nature, the NIH Office of Extramural Research, which oversees external grants, says that “a strong and diverse research workforce should be as representative as possible. This means the workforce should be inclusive of individuals with disabilities too.” The office notes that disability status is one of the focal areas in the 2019 Notice of NIH’s Interest in Diversity, which stated the agency’s commitment to improving representation. The office adds that grant applications ask about disability status only for the purpose of collecting aggregated information, and that the status is not visible to grant reviewers.
Among all applicants in 2018, hearing loss was the most commonly reported disability. That condition greatly complicates scientific collaboration, says Henry Adler, a researcher who studies hearing at the University at Buffalo in New York. He and his colleagues discussed the challenges faced by scientists with hearing loss last year in Acoustics Today (H. J. Adler et al. Acoustics Today 15, 66–70; 2019).
“I wear hearing aids, and I rely on lip-reading, captioning and sign-language interpreting,” Adler says. But interpreters and captioning technology aren’t always available, and he’s often left unable to communicate at impromptu meetings or informal encounters.
Fear of stigma
Adler understands why some researchers might be reluctant to disclose their disability status on a grant application. “That’s a difficult choice,” he says. “It’s nobody else’s business, and there’s a fear of attaching a stigma to the affected scientist’s research proposal.”
Lina Reiss, a hearing researcher at Oregon Health & Science University in Portland, doesn’t think that her own hearing loss has made it harder for her to win grants. In 2018, she disclosed her disability on an NIH proposal that was successful. In her view, the bigger obstacle for disabled researchers is the need to land a faculty position that makes it possible to apply for research grants.
Swenor says that the NIH could improve the overall understanding of the biomedical research community by explicitly expanding its definition of ‘disability’ to include issues such as chronic medical conditions and learning disabilities. She also believes that more research is needed to identify and address the factors that make scientists hesitant to disclose disabilities on grant applications. “The NIH aren’t the bad guys here,” she says. “We’re all in this together. We all have to do better.”