Surviving Monsters

by Psarah Johnson

We are mourning the loss of community activist and self-identified "cripplepunk" Psarah Johnson, who passed away on Friday, April 29, 2022. In memory of Psarah, we are sharing her essay "Surviving Monsters" from New World Coming: Frontline Voices on Pandemics, Uprisings, and Climate Crisis.

Psarah Johnson (center) is joined by fellow New World Coming contributors and editors at Weller Book Works

Halfway through my forty-fourth orbit around the sun, I discovered an alarming truth. I was dismayed to learn that there is no magical point on the timeline when one stops being afraid of silly things. I have to wear socks to the movie theater if I’m seeing a horror film. Otherwise, something will grab me from under the seats. It doesn’t matter how hot it is, I have to sleep with at least a sheet over me knowing this gossamer layer will protect me from the ax blows of a homicidal maniac. I still pole vault into bed to avoid a scalpel-wielding, “undead” toddler severing my Achilles tendon. I avoid the deep end of the pool for fear that a manatee will pull me under, a phobia which remains even after my college biology class taught me that a manatee’s natural habitat is not a chlorinated pool. As for basements, all I have to say is I live in a single floor rambler, and I refuse to go to bed without something heavy wedged against the access panel to the crawl space, which I have never entered.

“In the early months of 2020, I discovered that while one’s childhood fears didn’t necessarily disappear, they could be muted when confronted with a real monster.”

In the early months of 2020, I discovered that while one’s childhood fears didn’t necessarily disappear, they could be muted when confronted with a real monster. As a lifelong immune-compromised and chronically ill human being, I had always known I was at “higher risk.” I didn’t necessarily know exactly what that meant. I was informed one day by an ignorant classmate that I could die of arthritis. Other students reminded me of the “fact” that arthritis was contagious by chanting “leper” and running away if I got too close. Regardless, my mother and rheumatologist reminded me that these children were being a tad hyperbolic. So, dying didn’t seem like a very likely outcome for me. Certainly not as real a threat as the troll that lived in the shower drain and would cut off my toes if I stepped on it. Death, even factoring in my compromised immune system, could be easily avoided. At least such was the case before March of 2020 and the onset of COVID-19. My imaginative childhood fears slowly began to recede as new and very real fears emerged.

It began slowly. Initially, I learned that we could avoid the virus by quarantining. This was certainly no biggie to me. I, along with a large swath of the disabled population, knew how to do that! I had done that every flu season, especially when taking immune-suppressing medications. Disabled advocates, being well-versed in how to quarantine, how to keep a sanitized living space, how to mask and glove up when leaving that bubble, were the first to step up with protocols on how to stay safe. Zoom meetings and telecommuting became standard operating procedure, though we’d been asking for these “reasonable accommodations” since Bill Gates made his first million. We began mutual aid networks across the country, started collecting, inventorying, and distributing PPE. All while the Narcissist in Chief downplayed the crisis, devaluing us and our frontline efforts as expendable, casualties in the fight to save the economy. And his rabid fans soon took up the cause, openly admitting that these casualties were an acceptable price to pay to protect our American culture of corporate greed and wealth worship.

Then some of my progressive friends joined in, deciding the best way to ensure their own financial security no longer lay in social programs funded by a tax on legacy billionaires and financial corruption. Suddenly they too were happy to accept the death of a few for the good of the many; not the good of many lives, mind you, just many paychecks. The fear of losing their economic security was every bit as real a fear as COVID-19 but their response was akin to sending Godzilla to defeat Mothra. The destruction created by this so-called solution, re-opening the economy too far and too early, did nothing to solve the underlying problem. People began attending the anti-lockdown rallies, encouraging reopening businesses while the virus still ran amok. Many claimed masks were causing health problems, some even trying to cite the ADA as they claimed going maskless was a “reasonable accommodation.” This campaign, bred in ignorance, led to an infection rate higher than ever and a growing acceptance of anti-mask sentiment.

Soon I found myself unable to sleep. I sat on the edge of my bed, both feet planted firmly on the floor. I would roam my dark house, “Naked and Unafraid.” When daylight began to seep through the slats of my blinds, THAT was when I ran for the sanctuary of my bed and its cottony layers of protection.

The simple act of leaving my house felt dangerous. I felt like the lamb, with my unmasked neighbors—wolves licking their chops. The wheelchair constitutionals I used to take around my neighborhood took on a Mad Max feel as I would have to choose between veering into traffic or wheeling past an unmasked asshat defiantly coughing as he passed. I felt my odds were better in traffic—until I began to hear stories of the Trump trains intimidating folks for wearing masks. Then there were the anti-mask shoppers flouting the safety protocols established by grocery stores with the input of local governments and medical professionals. On one trip to the grocery store (during elderly and disabled early shopping hours), I realized I hadn’t been keeping an eye on the time. Just as I was at the end of the cereal aisle a mask-less man turned the corner and started toward me. I asked if he’d wait until I cleared the aisle, just another four feet. He brazenly kept coming. I backed my scooter down the entire length of the store, out to my car, and never went back. I began to feel like a target in more ways than one: A) I was one of those goddamn maskers that hated “Murica,” B) I was a fucking cripple, and C) my bald head revealed me as a cancer survivor who had the audacity to think I deserved to live through this pandemic.

Yes, in true 2020 fashion I had discovered a lump in my breast the size of a walnut. On April Fool’s Day! By the twentieth, I was undergoing chemotherapy and by May Day I was as bald as a cue ball. At this point, my childhood monsters were completely defeated by very large, very real, and seemingly undefeatable fiends that stepped boldly out into the sunlight and left me no safe harbor. My neighbor, who only weeks ago had offered to help my husband and me by mowing the grass and bringing meals while I fought for my life, now spouted eugenicist theories of “herd immunity” and “survival of the fittest,” while Darwin’s bones rattled in his grave. I could hear him shouting through the veil, “That’s not what I meant!” Ayn Rand has co-opted Darwin’s theory of evolution to uphold a disgraceful and selfish notion. While Darwin’s theory referred to the ongoing success of a species, Rand framed it in terms of the individual and who deserves life.

As ICUs began to fill, there was open debate over who deserved care and whether or not the chronically ill should be sent to the back of the line. I watched this debate play out from my hospital bed at the Huntsman Cancer Institute. I had not responded well to chemo, or rather had responded too well. My neutrophils, a type of white blood cell, were at zero. I literally had no immune system. I spent the loneliest week of my life (there was a zero-visitor policy in effect) listening to pundits infer that I was selfishly taking up a bed that could go to a normally healthy and productive member of society, temporarily “inconvenienced” by COVID-19. It was a rough week. Even more so for my husband and mother. Unable to stay with me or even come up for a visit, my family and friends were justifiably worried. In my neutropenic state, a fly with a cold could have finished me off. Luckily, my neutrophils returned. A week of careful monitoring and postponed chemo, and I was able to return home. But I could understand how it must have felt for those hospitalized with COVID-19.

My US House Representative, Ben McAdams, had been hospitalized with COVID-19 and he had shared what it was like. The pain, exhaustion, and weakness he experienced made neutropenia sound like a grand day at the beach. Yet regardless of our social stations, diagnoses, and prognoses, we were equally deserving of the care we received. But what would have happened had we simultaneously arrived at the doors of a hospital that was over capacity? In a decent society run by compassionate and intelligent leaders (which we had lacked for four years), this question wouldn’t have kept disabled advocates up at night fearing the true monster in their closets: ableism.

While we worried over whether or not we would receive treatment at hospitals, an anti-science administration went after our ability to access our treatment at home. I had relied on hydroxychloroquine for ten years to keep my joints lubricated and loose, and to ease my pain. Suddenly, after an ignorant and unfounded suggestion that hydroxychloroquine could be used in treating and even preventing COVID-19, I found it nearly impossible to fill my prescription. For forty plus years, I had used the same mom and pop local pharmacy. I was on a first name basis with the staff, and yet their hands were tied. They simply didn’t have the supply. It took calls to Walgreens, CVS, Rite Aid, and Costco before we could find a refill. This obstacle course was run monthly from March to July before supply trains recovered. Forget about toilet paper shortages, the hydroxychloroquine shortage of 2020 kept thousands immobilized, like trying to run a car without oil.

Still, I counted myself one of the lucky ones. With my parents retired and my husband largely working from home (thanks to COVID-19), I was able to stay in my house for the majority of my cancer treatment. For entirely too many disabled folks who lived alone, any additional medical emergency meant treatment at home was not an option. Instead, nationwide, People with Disabilities (PWDs) were being checked into nursing homes, assisted living facilities, and rehabilitation programs, and entirely too many of them were being left there, at the epicenter of the COVID-19 transmission. As if that wasn’t enough, many lost their apartments during that period of institutionalization, as frequently their rent was rerouted to the institution leaving them essentially homeless. This is because here in the US nursing homes enjoy an advantage called the institutional bias where states receiving federal Medicaid dollars MUST provide nursing home services while Home and Community-Based Services (HCBS) are optional and routinely denied.

ADAPT National, one of the top disability-led advocacy groups in the country, had been fighting against the institutional bias for decades by asking that Long-Term Services and Supports (LTSS) be made available through HCBS. Under our current system, a disabled individual recovering from surgery or illness could recover at home only if their state Medicare/Medicaid program allowed for HCBS.

The Supreme Court decision Olmstead v. L.C., one of Ruth Bader Ginsburg’s defining cases in 1999, found that “unjustified segregation of individuals with disabilities was a form of discrimination under the Americans with Disabilities Act (ADA).” While this decision made an important statement about the rights of PWDs, ensuring this decision was honored by all states has remained problematic, as is evidenced by the institutional bias still rampant in many states.

A hopeful solution exists, though. The Disability Integration Act (DIA), which has been introduced in the Senate, would change that, by giving, for the first time, PWDs their full rights to life, liberty, and the pursuit of happiness. The DIA would enable any disabled individual in any state across the nation to choose whether to remain home with in-home care or consider institutionalization. Of course, this Act makes the nursing home lobby nervous. Suddenly, money that had been earmarked for institutions, which ensured them a steady inflow of both capital and “customers,” would now also be used for in-home care.

Just a week before Utah’s March lockdown, ADAPT Utah, the advocacy arm of Disabled Rights Action Committee (DRAC), sat down with Senator Mitt Romney’s staff to discuss the need for the Disability Integration Act. In the time of COVID-19, the number of cases and deaths in these institutions were distressing. Nursing homes were considered hot beds for the virus. The threat to the staff and patients of these institutions became a national concern, yet many of these patients, overwhelmingly PWDs, didn’t need to be there but had no financial alternative. While Senator Romney never got back to us with a definitive answer, Senator Lee’s office and our House Representatives hid behind the “state’s rights’’ excuse claiming each state could decide for themselves, leaving disabled folks even more exposed to COVID-19 because nursing homes had monopolized Medicaid dollars. In fact, not a single Utah Congressperson has so far co-sponsored the DIA. Regardless, the DIA was introduced January 15th, 2019, with bi-partisan sponsorship at a time when the divide had never been wider. Together, Senator Chuck Schumer (D-NY) and Senator Cory Gardner (R-CO) introduced the bill to the Senate, and Representative Jim Sensenbrenner (R-WI) introduced it in the House. The DIA had thirty-eight Senate co-sponsors and 238 House co-sponsors yet it sat ignored all year by the 2020 Congress at a time when in-home care was more needed than ever for People with Disabilities. As the US was told to shelter in place, this community was left with no good options. The message heard by disabled activists was that our existence continued to mean little.

“A society that devalues disability and fears pain is a society that does not value survival.”

For far too long the term disability has been stigmatized as weakness, a painful reminder of one’s own mortality. I believe that this characterization is not only false but also harmful to humanity as a whole. A society that devalues disability and fears pain is a society that does not value survival. A society that chooses to hide people with disabilities from the mainstream is ensuring that people are wholly unprepared if and when they become disabled or chronically ill (as has happened to many post-COVID-19 patients). When our media fail to show disabled folks telling disabled stories, that media is responsible for keeping our society ignorant, unprepared, and negatively prejudiced. When our media take the time to show disabled bodies and listen to disabled voices, then society as a whole benefits, and stigma and fear are replaced by acceptance, understanding, and empowerment.

It is my sincerest hope that as we give the boot (and the finger) to 2020 and America’s most incompetent administration, we will move forward having learned some valuable lessons in what NOT to do in the midst of a pandemic:

• Don’t give a man-child with no medical background the microphone.

• Don’t ignore the advice of medical professionals.

• Don’t treat science as a belief system that you can choose to follow (or not).

• Don’t fuel your economy by throwing the disabled, chronically ill, and elderly into the furnace.

• DO involve people with disabilities in the conversation on surviving a pandemic. There is no other group as well versed in the simple subject of survival as People with Disabilities.

Maybe if we follow these simple suggestions, we can slay the COVID-19 dragon and I can go back to my mundane fears that a spider will lay its babies in my ear canal.

A self-identifying “cripplepunk,” Psarah Johnson was born with juvenile rheumatoid arthritis and spent her life collecting autoimmune disorders. She also suffered from PTSD, a result of medical trauma and psychological abuse. Psarah has worked as a group home coordinator, taught high school students theatre and civics, performed as a stand-up comedian, and—at one point—even ran away to join the circus. Psarah was a full-time activist, advocate, writer, and public speaker and served as board chair for the Disabled Rights Action Committee.