Note: This story uses person-centered language (“people with disabilities”) and identity-centered language (“people with disabilities”), according to mixed usage in various interviews. Please note that people may prefer either term or different terms.
With research expenditures of over $1 billion a year, it’s no surprise that the University of Wisconsin-Madison ranks 8th in the country in the production of research. Of course, proper training is key to creating a safe space for all seekers. But for people with disabilities who need additional accommodations, access to equitable resources in labs is limited and most lab spaces are not made to meet these needs.
The Americans with Disabilities Act “prohibits discrimination against persons with disabilities in all areas of public life, including employment [and] schools.” In reality, massive barriers still exist, making participation extremely difficult for people with disabilities, especially in STEM.
Katie Sullivan, a disability program assistant at the McBurney Center, who studies communication sciences and disorders as well as health promotion and equity, sees these barriers all around her.
“Students with disabilities and chronic illnesses are totally underrepresented in STEM,” Sullivan said. “Having a disability and trying to work in STEM is very stigmatized because there’s this notion that if you’re disabled you’re not cut out to work in medicine or work in research or be involved in science.”
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Recently, in 2021, the Bureau of Labor Statistics found that only 5.5% of men and women in occupations in life, physical and social sciences, architecture, engineering, computer science and math had a disability. And the National Institute of Health found that between 1999 and 2019, the percentage of people with disabilities in STEM increased by a measly 3%from 6% to 9%.
Much of the disparity stems from access to post-secondary education. There is a big divergence between those who have a disability and those who do not and who have obtained a baccalaureate. At the start of 2022, among people aged 25 and older with disabilities, only 21.1% had a bachelor’s degree or higher, according to BLS. Nearly double the amount without a disability has completed at least a bachelor’s degree, according to the BLS.
At UW, students with a registered disability can request accommodations provided by the McBurney Disability Resource Center. For many, the center offers extended time and smaller groups for testing, advanced access to course materials and adaptive technology to help with note-taking, according to Sullivan. Covering such a wide range of services is essential as McBurney supports more than 3,600 students in different fields of study.
Although McBurney is ideal for accommodating undergraduate students, a third-year Ph.D. a student in the Department of Integrative Biology, Nathan Anderson had a different experience as a UW employee and a Ph.D. candidate.
“McBurney only covers my accommodations as far as they go in the classes I take,” Anderson said. “In terms of accommodations in my capacity as a university employee – so the accommodations in the lab space where I work – have all been coordinated with the representative from the Department of Disability.”
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Anderson began studying life sciences upon acceptance into graduate school. As an undergraduate, he studied math, which required no lab work.
Still, having research experience was important to Anderson as an undergrad, but he struggled to find a lab willing to house his service animal.
“I do computer work because that’s really all that’s open to me,” Anderson said. “There are a lot of options that aren’t open to me in STEM.”
Although Anderson found research work that suited his needs, the same is not true for everyone. He said people with certain disabilities cannot teach or participate in certain microbiology and chemistry labs. Specifically, there are infertility issues and strict lab protocol when it comes to having a service animal.
Anderson and Sullivan believe that the representation of students with disabilities is so low in the STEM field because of exclusions. For other students with disabilities who wish to study STEM, earning a degree in their area of interest may not even be plausible.
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What many don’t realize, however, is that much of this negative perception of being disabled in a STEM field stems from society not recognizing the barriers it has erected around the community of people with disabilities, according to Sullivan.
For example, the American Speech-Language-Hearing Association (ASHA) has barriers that make it difficult for students with disabilities like Sullivan — who hopes to get into speech therapy — and other students with disabilities to pursue that career professionally.
“[ASHA has] those parameters that you have to be able to meet to get into graduate school,” Sullivan said. “You have to be able to lift that much, you have to be able to run, walk, see, hear, things like that.”
Additionally, life science research for students with disabilities can be very “unwelcoming” and “competitive,” Anderson said.
If there were more people with disabilities in STEM, it would help reduce negative perceptions associated with people with disabilities by making it common to see accessible features in society, Sullivan said.
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“Engineering and the way things are designed and made should really be about accessibility and the disability experience,” Sullivan said. “When you make something accessible, you don’t prevent non-disabled people from using it.”
As for students like Anderson and Sullivan, being disabled in STEM brings much-needed transparency to the issue.