Runt of the Litter:
Disability in the age of pandemic
IMAGE: Robert Eliason
Magda Romanka is a writer, and theatre and media scholar. A graduate of Stanford
and Cornell’s doctoral program, she was a founding editor of Palimpsest: Yale Graduate Literary & Arts Magazine. Her op-eds and articles appeared in The LA Review of Books, The Boston Globe, The Conversation, Salon, PBS, and The Cosmopolitan Review.
There was a saying in the Eastern Bloc back in the days of the Soviet regime: “You might not want to follow the news, but the news will follow you.” It meant that if you’re not aware of what’s happening in the larger world, you might not be able to escape the next impending catastrophe, be it human- or nature-made. Thus, those of us who grew up in the Eastern Bloc (Poland, in my case) are compulsive readers of news: understanding the world being considered essential to survival. I am explaining this to provide context for why I ordered my first face masks on January 22, 2020. On January 27, four days after China closed the city of Wuhan, I purchased four months’ worth of food and supplies, including hand sanitizer. Knowing how centralized governments work, I knew in an instant that China would not close Wuhan in response to the measly 300 cases reported at the time if they didn’t have some other internal knowledge of the severity of the epidemic (the combination of its mortality rate and the infection rate). For the next six weeks, I compulsively followed every piece of news and data, from peer-reviewed articles and preprints to local news reports and citizen-journalist social media posts coming out of China. I analyzed both the news and the numbers, calculating the likelihood of being personally caught in the upcoming storm. On February 5, I emailed a close friend from my alma mater Stanford, a computer scientist working in Silicon Valley, to give me his reading on the numbers, not trusting my own humanities-trained mind. His casual response, “Wash your hands,” indicated a gulf between us that I didn’t immediately understand. For him, it was a potential sniffle. For me, it was the question of life and death.
President Franklin Delano Roosevelt, whose legs were paralyzed from an illness, reportedly had a recurring nightmare about not being able to get out of the White House in case of a fire. Every disabled person, particularly those whose disability is connected to mobility, has a set of such nightmare scenarios: fires, floods, tornadoes, earthquakes. Being in a wheelchair, I choose to live in a state where the usual natural disasters—snowstorms—can be predicted ahead of time, because anything that requires urgent packing and escape would mean my most certain eventual demise. Regardless of whether my choice of residence is warranted or paranoid, it is a part of the broader multi-data analysis that every disabled person must perform daily to survive: a calculation of risk defined by the complex intersection of environmental, political, social, and cultural factors interweaving with the peculiar demands of one’s disability. Among the set of my nightmare scenarios, a potential pandemic has always ranked quite high: the chances of someone like me surviving one are slim, and the reasons have as much to do with my own high-risk susceptibility to infections as they do with the historical treatment of the disabled. Understanding this history, I knew that once the healthcare system got overwhelmed, I would be the last one to get the care I need, be it a ventilator, an ECMO machine, or medications. If I were to catch the virus, I would most certainly die. That’s what the data, my knowledge of human psychology, and awareness of the historical treatment of the disabled were telling me.
In early February, I emailed my two doctors, sharing with them my concerns. One of them dismissed me, assuring me that the hospital would have enough ventilators for everyone who would need one. “We’re ready,” he said. The other promised to advocate on my behalf if the worst comes to worst. I couldn’t tell whether she actually understood what I was saying or whether she was trying to calm me down. Did she know that in case of state or federal guidelines, her advocacy would have no impact? In early February, I also made an ADA request for access to the back elevator at my college to limit my exposure to potential infection. Working in the college environment, one sooner or later develops some form of germophobia, but I knew that my usual precautions (don’t touch elevator buttons and door handles, stay away from sick students, wash and sanitize your hands multiple times throughout the day) would not be enough. I sent my HR department a set of data and scientific articles coming out of Asia, together with my doctor’s note attesting to my (already clearly visible) condition. Although the back elevator was in constant use by other faculty, my request for assistance with accessing the elevator was refused. In mid-February, when it became clear that we would have a global pandemic, I made another ADA request to be able to teach my courses from home. I supplied our HR with additional articles and more data. By then, all the top virologists and epidemiologists on social media (if not on television) were pretty much in agreement that we would have a serious pandemic within the next two to three weeks on US soil. My HR, once again, refused my ADA request, arguing that it posed an ‘undue burden’ on the college to allow me to teach from home. The students paid for in-person classes, and they expected in-person classes, I was told. A few days later, all of our in-person classes were canceled. We were given one week off to prepare for online teaching, all of us.
What I experienced at work, a refusal of ADA-based life-saving accommodations—considered an ‘undue burden’ when applied to me but necessary when applied to others—was not unique. Many disabled Twitter users have been vocal on the topic, pointing out the bittersweet irony of the current pandemic: the requests for remote work or other ADA accommodations that would make it possible to increase the employment of disabled people to more than the current 19.3%, and which are customarily refused when requested by the disabled, are now considered essential to the survival of the greater population. We all suddenly have become disabled, requiring ADA accommodations.
The dissonance I feel right now is difficult to put into words. The raw contradictions that this pandemic has unraveled are playing out in the public eye, on the global stage, and on our bodies: from top-level conversations about the allocation of ventilators to numerous articles pointing out the low value that societies across the globe place on the lives of the disabled, and pleading for some universal sense of mercy, with a mixture of incredulity, pity, and moral outrage. The pandemic made visible what many of us have always known.
... more coming soon