On 26 July 1990, President George H. W. Bush signed the Americans with Disabilities Act (ADA), a law designed to guarantee equal opportunities for people with disabilities. Thirty years after the landmark civil rights law took effect, disability advocates across the country are observing the anniversary with a series of online events, essays, and social media discussions.
But for scientists with disabilities, the anniversary is also a recognition of the roadblocks that still exist within academia. Since the signing of the ADA, the number of STEM doctoral degrees awarded to students with disabilities has remained fairly stagnant, with only slight improvements in recent years. Though there are signs of progress, science students and researchers with disabilities report having to constantly advocate for both their accommodations and their equal access to information and spaces. “There is a common misconception that the ADA somehow solved disability,” says Jesse Shanahan, a data scientist who created the Twitter hashtag #disabledandSTEM.
In conjunction with several other laws, the ADA protects individuals with disabilities from discrimination by requiring “reasonable accommodations” and equal access to employment and public services, including education and public spaces. Because disabilities are diverse and can vary over time and in severity, accommodations are often tailored to meet the needs of an individual. Common accommodations include providing additional time on a test for a student with ADHD or allowing the use of assistive technology for a faculty member who is deaf or hard of hearing.
Accommodations are deemed “reasonable” if implementing them doesn’t create significant difficulty or expense or pose a substantial risk to the health or safety of others. However, the process is often subjective. Scientists report that academic institutions tend to focus on complying with the letter of the law, holding the ADA as the gold standard rather than viewing it as a minimum criterion and actively supporting the success of students and researchers with disabilities.
Gabriela Serrato Marks, a PhD candidate in marine geology and geophysics in the MIT-WHOI Joint Program, has been outspoken about her experience simultaneously conducting research and managing a genetic connective tissue disorder that causes chronic pain. She says that student disability services at universities are not always prepared to accommodate the diversity of disability present in the student body.
Describing the range of available accommodations as a menu, Serrato Marks says that when an individual’s condition “goes off-menu,” certain accommodations can be more difficult to obtain. She recalls that staff members were initially unsure how they could accommodate her need to sit while doing lab work. Accommodations improve access for everyone, she says, not just people with disabilities. For example, ramps that were required to be installed in front of most buildings across the US after the implementation of the ADA have also improved access for parents with strollers, delivery workers, and the elderly.
Shanahan reports similar experiences from her time as a graduate student in astrophysics. She says professors viewed her differently and expressed irritation with her accommodations when chronic pain from a genetic condition inhibited her ability to climb stairs to access the observatory. After experiencing all that “academic hazing,” Shanahan eventually decided to leave graduate school. “I felt like academia . . . was making me choose between my health and my career,” she says. “And at that point, I really couldn’t choose to disregard my health.”
Today Shanahan says she is not forced to pick between her work, mental health, and advocacy efforts; she describes herself as positively employed. “It’s really opened my eyes to the fact that all of those antiquated structures that we think are so necessary in academia really aren’t,” she says.
Students and faculty with disabilities can also experience physical obstacles when trying to access spaces because science departments are often located in historic buildings that are exempt from ADA requirements, says Anita Marshall, a geoscientist and volcanologist at the University of Florida who is also director of operations for the International Association for Geoscience Diversity (IAGD). Sometimes the only accessible entrance is a cargo door. “That is true in so many science buildings where it’s technically accessible. But what are we saying?” she asks. “The regular people get to go through the front door; you get to go around back with the deliveries.”
Disciplines such as geoscience that often require fieldwork present additional obstacles for students with disabilities. Among Marshall’s efforts through the IAGD is to make fieldwork more accessible by providing iPads or other technologies to students who cannot physically access remote geological sites. More broadly, she says that many geoscience degree programs are antiquated and “don’t line up with the reality of the career landscape,” which more often places scientists behind a computer than out at a geological dig site. Instead, she suggests “transforming the requirement to either not include fieldwork or have a remote option for fieldwork” or other alternatives like independent research.
Wanda Díaz-Merced has also experienced the challenges imposed by an often inaccessible academic system. The astronomer and computing scientist at the Harvard–Smithsonian Center for Astrophysics and European Gravitational Observatory, who lost her sight in her early 20s, is best known for using sound to explore data sets.
Academic materials are “highly visual, and the explanations are highly visual as well,” she says, and they present obstacles to her full participation in the field because they are not compatible with her assistive technology. It took more than 10 hours for her assistive technology to process one data set, and other large and incompatible sets have caused the program to crash.
Díaz-Merced has worked with many organizations to develop and improve standards for astronomical data and journal access for people with disabilities, including cochairing an American Astronomical Society effort to provide recommendations on making publications accessible. But she says that the adoption of these principles has been difficult, with institutions often citing high costs. Díaz-Merced says she refuses to accept that position, noting that often “the government has already spent millions of dollars” on the work.
Scientists with disabilities also identify obstacles when applying for the conferences, jobs, and opportunities needed to gain skills and advance in their chosen field. For instance, when searching through data science job ads, Shanahan found that they often require the ability to lift 50 pounds, though the actual work would never entail that amount of labor. She said listing such superfluous requirements is “taking advantage of a loophole in the ADA” by forcing people with disabilities to either disclose their status or disqualify themselves from the position because they would be required to request an accommodation.
Díaz-Merced says that due to challenges navigating the job market and getting support in their positions, scientists with disabilities face a “really huge” skill development gap—the mismatch between the skills individuals have and those desired by employers. She cites the 2015 United Nations Human Development Report, which calls access to education and skill development a human right.
Today advocates are pushing for the science community to heed the recent lessons in accessibility learned from the coronavirus pandemic. With many conferences forced to go virtual, Shanahan hopes that future meetings “will offer those tools like video captioning, recordings, [and] virtual conferences to allow more participation and inclusion of disabled people.”
Shanahan’s advocacy efforts have included making conferences, meetings, and other spaces more accessible for people with disabilities. In 2017, working as part of the American Astronomical Society’s Working Group on Accessibility and Disability, which she cofounded, Shanahan developed guides on quiet rooms, which can provide a refuge to those on the autism spectrum, and information on the distances between meeting rooms so attendees needing accommodations could make informed decisions. Another organization, Inclusive Astronomy 2, released in July a set of recommendations for inclusive astronomical meetings that includes similar suggestions.
Serrato Marks says the pandemic has brought to light that what was “seen for a long time as unreasonable accommodation,” like working completely remotely, is not only doable but also now widely accepted by the academic community, employers, and society more broadly. Though there are ergonomic challenges associated with her transition to working from home, she says she can now channel the energy she usually put into commuting into completing her dissertation, applying for jobs, and other projects.
One such project is coediting a book, due for publication next year, that compiles the stories of 30 scientists with disabilities. The impetus for the book came from Serrato Marks’s experiences seeking resources and mentorship for navigating her disability in academia; she also drew inspiration from the Disability Visibility project. The book, she says, will include “the triumphs and the pride and community and all these things that get left out of nuanced conversation about what it means to be disabled.”