My Year of Nothing but Everything
My Year of Nothing but Everything: Living in Pennsylvania During COVID-19
Approaching the one-year anniversary of my COVID-19 isolation, I recently described that I feel as if I’ve thrown the 27th year of my life into the void yet been forced to retain every negative memory and effect. In many ways, it’s felt like my Year of Nothing; the things that defined my life (my office and job as it was, the coffee shop I spent daily hours in, the time spent in the company of close friends) became dangerous to the point that I was forced to sever all physical ties. As someone who has trouble surviving the common cold, I shut myself into my apartment in fear for my life, turning to grocery delivery and scrambling to get cleaning supplies in the Great Toilet Paper Rush of 2020. As a PhD candidate working with influenza, I quickly jumped to study possible COVID drug targets at the beginning of the pandemic, devoting my working time to overwhelming new science, and my free time to doomscrolling through news stories about death tolls and care rationing for the disabled. I limited that free time by allowing work to consume my brain as a high cost distraction for several months as the crushing demands of academia stop for no body and no virus (especially when you hang at the virology table of the metaphorical academic lunch room). Although I began allowing myself to go on outdoor walks in late April, I’ve refused to enter most buildings. Life is a constant risk calculation, and I’ve gone ad nauseum through cycles of taking a risk, feeling the depths of regret, and re-shuttering myself until I can’t handle the confines of my one bedroom apartment.
While I cut as much from my life as possible, one large risk couldn’t be cut: the six hours a day spent showering, dressing, using the bathroom, cooking, and more with my 10-15 personal care aides. I often equate it to the annoyance of having 15 roommates (“Does anyone know where the fucking meat thermometer is?”) but their continued presence was suddenly the root of an internal conflict between wanting to feel safe and needing to meet my most basic human needs. I implemented new masking and cleaning procedures but had to accept that I have no control over my mega-pod of 15. When my aides, all students, or their contacts are exposed, I’m forced to push through the anxiety that exposure induces to scramble for a replacement (it’s somehow usually mere hours before their shift). Some aides quit early fearing that they couldn’t trust their roommates to isolate effectively. I trained and continue to call on friends who have pledged to isolate as well as they can to fill in for emergencies. I’ve always been proud to live what I call “independently dependently,” but for the first time ever in adulthood, I’ve found myself resentful and wishing for the ability to truly live independently without the need for assistance with my daily activities.
Pennsylvania’s original guidelines for vaccination placed people under 65 with high-risk medical conditions in phase 1C. When we were moved into phase 1A by the state on January 19, 2021, I felt true hope for the first time since March. I had spent ten months at unceasing high levels of anxiety over my fate if my hard work turned out to not be enough. I had tortured myself with a too real vision of my mom standing in a crowded ICU trying to explain my scientific efforts against COVID to a doctor to prove that I was worthy of medical care. I had worn myself out catastrophizing. Finally, there was a glimmer of security against what felt like an eventual promise of a grim outcome.
Unfortunately, I and many disabled people across the country weren’t witnessing a light at the end of the tunnel. Instead, we were tricked into continuing to barrel down the tunnel into a fire fueled by familiar institutional ableism. While the state of Pennsylvania recognizes my need for early vaccination on paper, the effort largely ends there. With no uniformity or accountability, county clinics have tiered phase 1A itself, refusing to vaccinate anyone under 65 regardless of high-risk status and devaluing the lives of those living with co-morbidities. Appointments at pharmacies are difficult to come by, occur at one day’s notice (the disabled nightmare: “No time to plan?!”) and demand constant monitoring combined with a quick draw at entering your information in a race against the local contingency of the estimated 3.5-4 million Pennsylvanians eligible for phase 1A. Providers are overrun to the point that many have disconnected their phone lines and cut digital lines of communication, fueling misinformation and confusion in those desperately looking for help. With no data published on the number of high-risk Pennsylvanians infected with COVID or being vaccinated, it’s likely we’ll never know the negative effect that this chaos will have on our community.
After Allegheny County booked and cancelled my first appointment because of my age, I realized that I had stumbled into a terrible game of keep away with the state of Pennsylvania. Vaccine deliveries were delayed and cancelled due to shortages (as I write this over one month later on March 1, only ~half of the estimated 1A-eligible people are vaccinated) and opportunities diminished. I heard whisperings of a county clinic partnered with the University of Pittsburgh where graduate students of certain departments (not mine) were lining up to be vaccinated. While intended for the small number in those departments with patient contact (i.e. a small number of bioengineers work with humans instead of monkeys, mice, or cells), failure to relay or enforce (it’s unclear whether the university or county is to blame) patient-facing requirements resulted in the vaccination of large quantities of young, abled graduate students with no direct risk.
When I questioned the university after the third day of the clinic as to why this egregious misuse of vaccines was continuing to occur while I was being refused from site after site, I was told the county was responsible for deciding who was to be vaccinated and that the university was committed to an equitable vaccine distribution. I’ve seen this shrug of responsibility from numerous institutions called out for inequitable behavior, but it still made me question the validity of my rage and feelings of helplessness. When my appointment was cancelled to serve the elderly, I accepted it as net good for those at risk. I couldn’t extend these good graces to forgive the lack of accountability which upheld the ableism that plagues me through the pandemic. I watched my peers in other departments receive vaccinations while I continued to do battle on the CVS website against every desperate 1A soul in western Pennsylvania.
A local Facebook group dedicated to sharing vaccination opportunities is a mixed bag of emotional extremes: people pleading for an appointment for their husband who has a history of heart conditions, angry and begging someone to help them understand where they’re qualified to go, exclaiming what it means to them that their day finally came. The community gathered in the group brings my individual experience into perspective at the population level. Across the board, disabled lives have been undervalued from the beginning of the pandemic, an overwhelming trauma layered over the pre-existing failings of the American healthcare system.
Both the absence of a national health system comprehensive enough to accurately determine the number of high-risk individuals and medicine’s historic bias, rooted in white supremacy, which systematically under-diagnoses and underserves BIPOC individuals combine to uphold the mistreatment and erasure of disabled Americans. When this is over, there will be no recognition by our government of the scale of our community’s loss, just as there was no true appreciation of the scale of our existence before. It’s easy (and valid) to blame our current vaccination state on the ineptitude of the Trump administration, but it’s also important to acknowledge our past and the road we’re on for the foreseeable future. A long history of defunded public health in favor of privatized, market driven solutions has left us with crumbling hospital infrastructure across the country. 77% of rural hospitals are medically underserved, hospitals which serve countless numbers of marginalized people. Access to healthcare is a function of residency, age, race, ability, socioeconomic status, and luck, a fact laid bare by the pandemic for those who hadn’t previously had the joy of waiting on a system that was never meant to save them.
On February 17th, I finally won the lottery. I drove 1.5 hours on a day’s notice to receive my first vaccine dose. On our drive to a rural church, my friend, a queer, indigenous Latinx person, and I discussed what it meant for us to make the trip together. As multiply marginalized people, we’re no stranger to finding community in each other in the absence of support from the institutions that govern our lives. I would have felt a new hope regardless of who took me for the jab but sharing this moment felt representative of the positives I’ve gained from the pandemic: in all the panic and chaos, the queer, disabled, and BIPOC lives intersecting mine have brought so much comfort, joy, and power to my experience.
The aide who helped me get ready for my vaccination trip would test positive three days later, knocking me off of my vaccine high. Suddenly, the threat my aides posed to me had been pointed back at them and there was no good solution. Anyone who lives independently dependently knows the internalized ableism that materializes as guilt for asking for too much from others. Asking the people I love to knowingly expose themselves while waiting for my test results was something I hope to never need to do again. The longer this vaccination period lasts, the more disabled people face this same moral quandary.
Whether by a graciously timed immune response to the vaccine, a rare false positive, or more luck, I tested negative. I still have no plan for what to do the next time this happens, and I don’t believe there is one that has a positive outcome. Post-vaccine, I, like many disabled people, will remain inside and wait. We’ll gladly welcome the newly disabled long haulers into our community. However, the pandemic won’t depart carrying the crumbling healthcare infrastructure and institutional inequities it exposed. We can only hope that everyone else will be ready to join our long-standing calls for accountability and justice.
It’s easy to see this past year as the Year of Nothing, but it would be disingenuous to allow my learned numbness to glaze over the experience. To forget the full range of human emotion I’ve felt from my living room. To ignore the solidarity found in my communities in isolation. To improperly mourn our dead. Instead, maybe I’ll call it my Year of Nothing but Everything.
Ep 91: Disabled Engineers with Emily Ackerman, Disability Visibility podcast
Ep 94: Healthcare Rationing with Britney Wilson, Disability Visibility podcast
COVID-19 Vaccine Prioritization Dashboard, Johns Hopkins Disability Health Research Center and the Center for Dignity in Healthcare for People with Disabilities
Emily Ackerman is a doctoral candidate in chemical engineering and disability activist. Her activism lies heavily in ensuring equity in STEM and fighting the injustices which face academic workers. She lives in Pittsburgh with her cat, Poppy.
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