For a period of time in 2020, many of us rarely left our homes. The COVID-19 pandemic forced us to find new ways to collaborate and communicate. For people with disabilities, the COVID-19 pandemic made clear that many remote work accommodations that had once seemed extreme were, in reality, quite workable.
A group of researchers, including associate professor of Anthropology at The University of New Mexico Siobhán Mattison, recently laid out some lessons learned from this era to broaden participation in Science, Technology, Engineering, Math, and Medicine (STEMM) for people living with disabilities.
The commentary, Community voices: broadening participation in Science, Technology, Engineering, Mathematics, and Medicine among persons with disabilities, was recently published in Nature Communications. The researchers contend that broadening participation in STEMM is crucial for vitality and innovation in science, biomedicine, and beyond, and can be accomplished with some of the same tools so many relied on during the pandemic.
Mattison, who is also a rotator at the National Science Foundation, was recently diagnosed with myasthenia gravis, a rare neuromuscular disorder with pervasive effects on skeletal muscles, as well as other auto-immune conditions. Her passions include bolstering anti-exclusion efforts in STEMM.
“Beyond a slight droop to my eyelids, I can appear non-disabled to outsiders, but I struggle to walk more than a mile on a good day and sometimes to get beyond the driveway. I am lucky that treatments have made me more stable in the last year than I was prior to diagnosis, but the time and energy it took to receive the diagnosis and begin treatment were considerable,” Mattison explained, adding, “The pandemic has also been daunting as an immune-compromised person. Luckily, UNM and NSF have provided accommodations to manage these constraints and have helped me to work through challenging bureaucratic issues, such as health insurance, to support that stability.”
Mattison’s co-authors also carry a variety of diagnoses, including: diastrophic dysplasia dwarfism that necessitates forearm crutches and a scooter to assist with mobility; amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's disease, after the baseball player who was diagnosed with it), which results in paralysis of skeletal muscles, but does not affect cognition or the ability to treat patients or engage in research; Ehlers-Danlos Syndrome Type III and EDS-related dystonia that affects speech and mobility; spinal cord injury resulting in incomplete quadriplegia; and epilepsy.
Mattison observed that at UNM there is “remarkable variability in access.” Her office isn’t easily accessible, for example, and she would find it challenging to get from one end of campus to the other in 15 minutes, teaching materials in hand, without support. In the classroom, she strives to accommodate students as much as possible, regardless of their perceived abilities or disabilities, including by “adjusting the classroom and lab to meet more diverse learning styles, being flexible about the hours that students work, providing students with access to different means of participating in research, from locally in the lab to remotely in the field, or via remote means, if being in person isn’t an option, and knowing that life, health, and other factors get in the way sometimes and just letting that be OK.”
“The COVID-19 pandemic overhauled the ways in which people participated in STEMM, revealing that existing structures are more malleable than previously thought,” according to the commentary. The authors argue that certain COVID-19-related adjustments should be preserved.
“Some of the barriers to access that existed prior to the pandemic were inadvertently surmounted during it. We need to maintain and expand on the flexibility that was necessary to adjust to the pandemic to expand access and participation among disabled people with diverse skills and equally diverse constraints. The academic environment is built to accommodate a narrower segment of the spectrum of humanity than it could be. We need dedicated efforts, representation, and a systematic approach to meet the needs of every human who wants to be part of the STEMM enterprise,” Mattison noted.
“Disability is a broad concept, including visible and invisible physical and psychological impairments, as well as chronic conditions,” according to the commentary. “Like non-disabled persons, disabled persons are diverse, demographically and in the manifestation of disability and ability. Unlike non-disabled persons, the abilities of persons with disabilities (PWD) are often overlooked and their talent is often lost.”
The researchers call disability "the forgotten D in diversity" and note that all disabilities aren’t obvious, defined, and accounted for. They advocate an approach called FAM ̶ Flexibility, Accommodation, Modification ̶ that provides broad support for all persons regardless of disability category.
Flexibility: Rather than insisting all members of the workforce work in the same way, allow individuals to contribute in ways that meet their specific needs, abilities, and preferences. The researchers call for hybrid workforces with adjustable schedules and modes of work that benefit both disabled and non-disabled individuals.
“Accommodations: Adjustments made to built and cultural environments to maximize inclusion—should remain a priority post-COVID-19,” the researchers maintain, noting that “accommodations must allow for inclusion of individuals with physical disabilities, as well as neurological, social, or apparently ‘invisible’ disabilities, including conditions that do not require use of assistive technologies and mental illness.”
Finally, “Modifications to essential duties and/or time requirements must be incorporated into our approach to DEI in order to achieve full participation of PWD in STEMM. While it is possible for accommodations and flexibility to allow some disabled individuals to occupy the same position as a non-disabled individual, reliance on these alone is inadequate for some disabilities. PWD often must devote significant time and energy just to care for themselves, including medical appointments and treatments. Modifications to workplace environments and job duties allow disabled scholars to balance the demands of their disabilities against innovative and necessary contributions to research.”
The commentary explains that the suggested measures will benefit not just the disabled: “Inclusion does not have to be a scarce resource” says Katherine Wander (Binghamton University), another of the paper’s authors. The commentary points to the principles of Universal Design: things like curb cutouts and ramps benefit people who use wheelchairs, ride bikes, or push strollers. They may also benefit children learning to walk and people using crutches after an injury. Broadening inclusion in workplaces and workways stands to benefit us all, particularly, but not exclusively, if we have a disability. And, as the commentary points out, the vast majority of us have or will experience disability ourselves or through a close colleague, friend, or family member.
Mattison urges the UNM community to resist “returning to normal” and reminds folks that “‘normal’ is a distribution rather than a standard that is set to meet the needs of only some humans. We should take lessons learned from the ongoing pandemic very seriously and strive for something better and more inclusive than what we had before it.”
Mattison said approaches to disability are largely idiosyncratic, based on individual needs, documentation, and institutional structures.
“Existing efforts to broaden access on our campus are laudable, but much more could be done to ensure that we are capitalizing on the talents of our diverse disabled stakeholders. This should begin with listening sessions and sustained efforts to close knowledge gaps and to understand the disabled person’s experiences. Disability needs to be marked as a priority for broadening participation efforts, funding set aside to support improvements, with efforts evaluated, monitored, and revised as necessary.”
The commentary summarizes, “The inclusion efforts we have outlined will lead to a post-pandemic life that is more satisfying for all involved. Indeed, the vast majority of readers of this commentary will have been touched by disability, though many may be unaware of these basic principles of disabled inclusion and will benefit both directly and indirectly through this approach.”