Normal birthed me, yet normal actively wants to extinguish me. My day-to-day life before the pandemic was marred by inaccessibility: a series of doctor’s appointments, unending piles of bills, the complex map of phone numbers to services I desperately needed. In New York City, where I used to reside, navigating life was extremely difficult. When the weather was sweltering, I had to remember my cooling vest, but what if the cold packs melted, what if the temperature had spiked on a day I wasn’t prepared? Many times I would stand at the bottom of a series of subway stairs, feeling frozen at the thought of not only the impending physical pain I would experience but the many layers of oppression I had to shoulder to get to where I needed to go. The stress of it all led me to move across the country to Los Angeles.
In the early days of the pandemic, as a person with an autoimmune disorder that is treated with immunosuppressants, I feared the worst. If I got Covid, would I end up in a crowded emergency room (a place rife with medical trauma for me)? Would the virus trigger another relapse of my MS? I started quarantining a month before the official lockdown was ordered, feeling lost and confused about how everyone was going to prepare for being isolated for an unknown amount of time.
Luckily, I am part of a community of brilliant people who know what it is like to live in isolation, who support one another and actively envision a world where everyone’s needs are accommodated. That’s not to say people weren’t also anxious. On social media, many expressed fear that the needs of disabled people would come last, that we would watch our friends and loved ones die. As that very thing happened, I pleaded with others to do the minimum for our safety: Just wear a mask and practice social distancing. Members of the community did the work of alerting people to our struggles, but it often felt as if we were screaming into the ether.
In December, my partner and I were diagnosed with Covid. It shouldn’t come as a surprise. Although we meticulously took precautions, others did not. In the late fall and winter, Los Angeles became the US epicenter of the virus. Analysts said people had just gotten tired of being careful. We watched, incredulous, as the property management company’s electrician entered our apartment without a mask. I ended up with a mild case, and rested as the virus ran its course in my body. My partner was not so fortunate. She had all the typical symptoms: chills, fever, a loss of taste and smell. For days, she was nauseous; she vomited. I remember looking down at her on the bathroom floor one night—seeing my caregiver the smallest she has ever been. For what seemed to be the first time, she was in need of physical support.
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Role reversals with my partner weren’t the only changes that rocked my world. As the virus wracked the country and corporations and schools began adopting virtual spaces, I felt resentful thinking about the times I was unable to work because I was refused accommodations around my disability. I’ve been without a salaried job for seven years and receive government benefits. I long ago gave up on the idea of being conventionally employed. As with so many disabled people, that hasn’t stopped me from doing cultural work. Knowing that society deems us both dangerous and fraudulent, alternatively weak, needy, and unworthy, has emboldened me to flip the script: to tell the rich stories of disabled people of color through my podcast, Power Not Pity. When doing that work, I feel I am never truly alone.
Yet the experience of the pandemic leaves me with a bitter question: Would I have been more employable if accessibility had been prioritized in the same way it is today? Virtual spaces are now more easily accessible because they have to be. It only took a pandemic to change the way we conduct accessible communication. It only took a pandemic to realize that our collective survival is wrapped up in societal change. Normal has always been controlled by the systems that keep my communities without the resources that we need to live and thrive. “Going back to normal” would mean going backward. As if on cue, just last week LA County registered its highest daily rate of Covid infection since May.
This pandemic has turned so many facets of my life on its head, and I can never look back and desire what was deemed societally important only a year and a half ago. Being sequestered at home gave me so many chances to be introspective. Like many people during this time, I began coming home to myself. I began to understand my own priorities and values as significant and nonnegotiable. I came out as trans during this pandemic. I finally felt open enough to accept the language that described my spirit.
I find myself bringing my whole self to everything I do more often. The pandemic has upended the meaning of authenticity in my life and has made me reconsider my own resilience in the face of hardship. I used to hide who I was, trying my hardest to fit into the boxes that systems of oppression savagely created. Now, I lead with my identities first. I am a podcaster. I am a disability justice advocate. I am a loyal community member and your favorite hype prince. I am very Black and very trans. Every day I wake up and I choose to reimagine and shape what future worlds will look like. I don’t want a new normal; I want a new era.
Scenes From a Pandemic is a collaboration between The Nation and Kopkind, a living memorial to radical journalist Andrew Kopkind, who from 1982–94 was the magazine’s chief political writer and analyst. This series of dispatches from Kopkind’s far-flung network of participants, advisers, guests, and friends is edited by Nation contributor and Kopkind program director JoAnn Wypijewski, and appears weekly on thenation.com and kopkind.org.
