How Ableism Holds Back Scientists—and Science
Researchers with disabilities are speaking out. NIH is starting to listen.
Throughout her academic career, epidemiologist Bonnielin Swenor has managed—with endless persistence—to navigate a research enterprise that was not built to accommodate a researcher like herself with a visual disability.
In the process, she has become a leading advocate for researchers with disabilities of any kind who also run up against barriers to doing their work.
A turning point in Swenor’s efforts came in 2020 when she published a study showing that the percentage of NIH-funded researchers in 2018 who reported having a disability was 1.2%—down from 1.9% a decade earlier.
“Data is tough to argue with,” says Swenor, PhD ’13, MPH ’09, who had to file a Freedom of Information request to obtain the data. “With evidence, there was a little more push to the advocacy.”
In 2021, as part of its work to improve diversity, NIH appointed Swenor to co-chair a Subgroup on Individuals with Disabilities to develop ways to increase disability equity and inclusion. In December, it published nine recommendations that were endorsed by a top-level NIH committee, and within a year it must report on progress in implementing the recommendations.
“I never thought I would see this day,” says Swenor, founder and director of the Johns Hopkins Disability Health Research Center. “We’re at a place where disability inclusion is being prioritized and recognized.”
In a Q&A, Swenor, associate professor in Epidemiology at the Bloomberg School with appointments at the schools of Nursing and Medicine, reflects on her advocacy work, her life as a researcher with a visual disability, and how language around disability matters.
Can you point to a particular time or moment that set you on your path to becoming a prominent voice in seeking equity for researchers with disabilities?
About 10 years ago I was kicked off a project when a potential collaborator found out about my disability. They basically said that they wouldn't trust my work. They didn't understand how I did it, didn't understand how I saw my data, and as a result they didn't think I'd be a good fit to work on the project.
That was really a turning point, because it was my biggest fear. I spent a lot of time in graduate school hiding my disability, for that exact reason. I was so afraid that people wouldn't want to work with me or wouldn't trust my work. And when that exact fear became a reality, I thought for sure my career was over and this was going to just keep happening.
At that time, no one was talking about disability inclusion in research and academia like we are today, and there were almost no efforts to address the barriers that people with disabilities face in this career. But at some point, I just let go of that fear and thought that I might as well just try. I figured I was going to be squeezed out of a research career anyway, so why not go out trying to make a bigger change. I felt I had nothing to lose, and that allowed me to start speaking up more.
How does having a visual disability impact your professional life?
I can talk through a hypothetical day. Let’s say that I get to work and go to a talk, but I can't see the slides. Is someone going to give an audio description? Am I going to be able to get the same content and information? Likely not.
Then I go to my office and try to read a paper. Is it accessible? Often it’s not, and it's a struggle. I want to submit an article for publication. Is the online portal accessible? Likely, it is not either. I want to submit a grant application. Is that process and information accessible to me? So many times, parts of it aren’t. I need to give an update on the work I've done under a grant. Is that process accessible? Many times, the answer is no. There's a thousand preventable barriers holding you back, making it seem like you can't do the job. But in reality, it is that society hasn't been built in an equitable way to allow people with disabilities to have a decent shot at success.
How do you overcome these barriers?
I have a trusted network of colleagues I work with to help me in certain moments. I have figured out software options and workarounds, and I’m not afraid to send an email saying “your system is not accessible; let’s work on trying to change it.”
One of your group’s recommendations is to eliminate language about “reducing disability” from NIH’s mission statement. Why is this important?
We recognized how much language matters. The NIH mission statement actually had been revised previously to remove “the burden” of disability. We decided it needed to go further, because wording in the current statement, which includes “to reduce illness and disability,” perpetuates an idea that is so tightly held in research—that disability is without a doubt something to prevent, treat, or even erase.
There certainly are some types of disabilities, those that come with severe pain, for example, for which people do want to find cures or to be prevented. But there are also members of the disability community who are proud of who they are and do not want their disability to be removed or erased. So, our committee believed that removing this language from the NIH mission statement would help to draw attention to a need to think more inclusively about disability. We also wanted to clearly highlight that it is time for a more disability-inclusive overall approach to research.
What is lost when people with disabilities are not represented as researchers and as participants in research studies?
Diverse groups do better science, and disability is a core dimension of diversity. In the United States, there are 67 million adults, or 27% of the population, with disabilities. However, the most recent data from the National Science Foundation indicate that only 3% of the STEM workforce reports having a disability. In the past decade, gains have been seen in the representation of all other groups underrepresented in STEM, but the representation of people with disabilities has remained largely unchanged. This persistent exclusion of people with disabilities has gotten relatively little attention, symbolic of how deep the barriers are. There needs to be much more urgency to address this issue, as a large number of people are locked out of research careers and we are clearly not doing enough to change that.
Similarly, how can we claim our research is generalizable when we are systematically excluding a large percentage of our population? People with disabilities are too often excluded from trials and cohort studies, not on a scientific basis, but because it's inconvenient or incorrectly perceived as impossible to accommodate and recruit disabled people. This is not good science, it is ableism. This exclusion has implications for public health, and removing barriers for people with disabilities to participate in and benefit from research must be a priority for everyone working in this field.
Jackie Powder is the assistant editor of Hopkins Bloomberg Public Health magazine.