COVID-19 brought changes for everyone in the past 15 months. We shifted to working from home, and now we are slowly shifting back again. As I noted in a previous blog post, ADHD in a Pandemic, the pandemic posed both challenges and unexpected benefits for me in coping with my ADHD, and I am not the only person with a disability who felt this way.

The Pandemic Revealed the Disparities in Access

The Equal Access in Science and Medicine Committee recently hosted a two-day student panel, “Living with a Disability During the COVID-19 Pandemic.” The panel included trainees ranging from undergraduates to postdoctoral fellows studying science, medicine and public health. This panel was moderated by Bonnielin Swenor, associate professor in the school of public health and Wilmer Eye Institute, and director of the Disability Health Research Center.

Although unprecedented civil rights were achieved for people with disabilities in 1990 with the signing of the Americans with Disabilities Act (ADA), COVID-19 has shown that there remain differences in public sentiment and disparities in access for those in the disabled community.

Downplaying of the Risk

For several panelists and attendees, the pandemic made it apparent that disabled lives are not always valued. Erin Kavanagh, a Ph.D. student in the Cross-Disciplinary Graduate Program in Biomedical Sciences, remarked that many news outlets downplayed the severity of the crisis, saying that you only had to worry about the virus if you were elderly or had underlying conditions. Some news outlets and members of Congress were even arguing that we should be willing to sacrifice high-risk people to spare the economy [1]. “People were saying it was not that bad. ‘This is the death rate. These people are sick and going to die anyway.’ That was really hard for me to see,” Kavanagh said. In addition, when COVID surges made it necessary to ration medical care, healthy people with disabilities were considered lower priority due to quality-of-life metrics [2].

While the COVID pandemic reminded the disabled community that their lives are often considered disposable, it also led to increases in accessibility as employers adopted more flexible work schedules and work-from-home options. In fact, nearly every member of the panel had a story for how this increased accessibility improved their lives. For some, this meant being able to watch and re-watch recorded lectures and seminars on their own time, leaving flexibility for when chronic illnesses and physical disabilities flared up. For others, it was a plus that they did not have to navigate old buildings that are not ADA adapted. Panelists with impaired hearing and sensory processing issues emphasized how having recordings of lectures and seminars improved their access, specifically due to the availability of captioning and reduced background noise.

“I think [the pandemic] made the disability community realize that ... equal access is possible and has been possible. I really hope that these [changes] do stay in place so that we can continue to have equal access,” stated Kavanagh.

Fading Equitable Access

That said, there is fear that the steps toward equal access taken during the crisis will not be made permanent. Amy Gill, a biomedical engineering Ph.D. student, voiced their concerns about what access is going to be like post-pandemic: “Right now, it is not a problem if I have to miss a lecture. … I’ve been trying, partly out of fear of how different it will be in person, to get all of my academic requirements taken out as soon as I possibly can so that I do not need to necessarily navigate the landmines of what it is going to be like in a regular, in-person class.”

Also in attendance at the seminar were faculty and administrators, hoping to learn what the institution can do to make academic spaces accessible to the disabled community. One way Johns Hopkins can start to address this is by adopting universal design. Universal design, put simply, is the design of buildings and environments so they are accessible to all who use them without the need for “adaptation, modification, assistive devices, or specialized solutions [3].” One example of this in education would be to have all lectures captioned automatically so that any person, regardless of hearing impairment or sensory-processing disabilities, could understand the lecture. Having the person with the hearing impairment contact the Student Disability Services Office to hire a professional captioner to caption the class for them for every class is an example of an adaptation. An adaptation like this is typically termed an “accommodation” and is mandated by the ADA. “Title I of the ADA requires an employer to provide reasonable accommodation to qualified individuals with disabilities…, except when such accommodation would cause an undue hardship [4].” The important difference here is that accommodations put the onus on the person with the disability to request them and make sure they receive them, whereas universal design puts the onus on the institution to make sure their spaces are already accessible.

The Need for Accommodations

Although employers are required to provide reasonable accommodations, getting accommodations can be financially and emotionally difficult, as noted by the panelists. Requesting accommodations usually means that your school or employer will request medical documentation of your disability. However, as Nicolette Vigiano, a master’s student in the school of public health biology program, notes, some members of the disabled community are undiagnosed and/or do not have access to health care. “Without universal health care, we have to pay to see doctors, get the diagnosis, … the ADA does not cover that.”

Even with access to health care, getting an accurate, documented diagnosis can be a huge obstacle. Sharmaine Miller, a postdoctoral fellow in the Department of Environmental Health and Engineering in the school of public health, shared the story of her diagnostic journey. “For me, the intersectionality of being Black and disabled felt very isolating. Even in regard to not being able to get a diagnosis and finally getting a diagnosis, I had spent thousands of dollars just trying to get there.” She recalls, “I had symptoms of pain, slow-growing pain and fatigue. I dealt with so many doctors that basically completely disregarded me. [They told me] ‘Go outside more. You were on too many medications.’” It took her over two years to get the formal diagnosis that is often required for accommodations.

Amy Gill echoes the sentiment on how difficult it can be to get accommodations, even if you know what might help you succeed: “You cannot just ask for the things that you would need. We need medical proof, and it is very easy to get brushed off by doctors. Specifically, … if you are ‘high functioning’ and do not have intellectual difficulties, you are perceived not to meet [the requirements for] accommodations in a lot of cases.” Amy went on to stress that people also may not know what accommodations they can ask for, given a condition. “The fact of the matter is a lot of people who could benefit from accommodation will not get them. They will either not know to ask for them, [or will not be able to] get the documentation they need for it or any variety of things.” Amy then turns their attention to how faculty can change their teaching strategy to benefit not only disabled students but all trainees: “If you are giving a lecture or teaching a class, the more of these accommodations you can build into your presentation and your teaching, the better it is for all of your students, not just the few who may request accommodations through disability services.”

Awareness Leads to Change

Increased awareness of the difficulties that these trainees face is critical because it allows us to address the inequitable access to spaces in science and medicine. It has become very clear that people can participate in science and medicine in a variety of venues (some of which are virtual) and still be successful. We need to make sure that virtual participation becomes a permanent option moving forward, and we need to continue to think of ways to incorporate universal design into academic spaces.

Additional suggestions from the panel were to implement disability inclusion language training for faculty and staff, and for the university to acknowledge that trainees with disabilities have been disproportionally affected by the pandemic at large.

As we emerge from the pandemic, it is the perfect time to reimagine what “normal” will be, and how we can make sure the new normal includes access for everyone.

Works Cited

[1] The Economist Newspaper. (2020, April 2). Covid-19 presents stark choices between life, death and the economy. The Economist. https://www.economist.com/leaders/2020/04/02/covid-19-presents-stark-choices-between-life-death-and-the-economy.

[2] Shapiro, J. (2020, April 15). People With Disabilities Fear Pandemic Will Worsen Medical Biases. NPR. https://www.npr.org/2020/04/15/828906002/people-with-disabilities-fear-pandemic-will-worsen-medical-biases.

[3] National Disability Authority. (n.d.). Definition and overview. Centre for Excellence in Universal Design. http://universaldesign.ie/what-is-universal-design/definition-and-overview/definition-and-overview.html.

[4] EEOC Enforcement Guidance on Reasonable Accommodation & Undue Hardship Under the ADA, No. 915.002 (Oct. 17, 2002), available at https://www.eeoc.gov/laws/guidance/enforcement-guidance-reasonable-accommodation-and-undue-hardship-under-ada


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