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Ableism’s hand in the perpetuation of a pandemic

The chronically ill, the disabled, and the neurodivergent often get the short end of the stick, writes K Cassidy. Here, they share their COVID-19 experience as the partner of a person with an immune deficiency.

Early on, we heard all about the groups at a higher risk of severe COVID-19 disease: the ill and the elderly. “High risk” meaning more likely to get the worst of the worst if they contracted the virus, and more likely to die from it, as is the case with other respiratory illnesses like the flu. The big word “immunocompromised” appeared on screens constantly, a word loaded with all the times I’ve had to define it when I talk about the person I love, the person I share my life with.

My partner has an immune deficiency. Our roommate, one of our best friends for many years, is also immunocompromised. My chronically ill little family had a hard enough time leaving the house before all this thanks to unpredictable body fatigue and anxiety, but suddenly it was  “high risk” to exist in the world around other people. 

As the CDC so helpfully puts it, the best way an immunocompromised person can stay safe is by avoiding exposure to COVID-19. They could potentially die from going outside, from encountering infectious people who weren’t doing their own parts to stop the spread of the virus. All over the country, there were plenty of people carelessly disregarding shelter-in-place orders and mask mandates in favor of hosting parties, getting haircuts, and waltzing into any open restaurants they could find. In our own city, in my partner’s already limited realm, people refused to do even the smallest things anyone can do to keep others safe.

You can see how this made things particularly difficult for us.

Survival of the fittest

Ableism has run rampant during the pandemic. If you’re not familiar with the term, ableism is the prejudiced treatment of people with disabilities under the presumption that they are inferior. Ableism is a world built in favor of the able-bodied, where building designs fail to provide ramps or accessible bathrooms. It is being denied basic accommodations because someone thinks you don’t need  them, or because someone feels inconvenienced by the effort required to provide them. Ableism is a worldview based in ignorant statements that alienate people who already often struggle with feeling like “burdens.” It exists in macro and micro aggressions all around us, and it really doesn’t have to. An awareness of diversity, a compassionate perspective, and a little extra effort is all it takes to change the world for the better. For everyone.

But one of the main tenets of ableism is “survival of the fittest,” a gross misunderstanding of an evolutionary concept (natural selection) as “only the strongest will prevail.” Only the strongest, only the best, even deserve to live on. And disabled people are dis-abled. How could they be the best? How could they be deserving?

One form of ableism that reared its head very early on was the belief that being young and able-bodied meant you didn’t have to worry about the virus. The lack of concern meant people weren’t wearing masks and they weren’t social distancing. They were willing to risk passing the virus to others that it could potentially kill just so they could act like everything was normal. This sends a painful message to the high risk groups: they do not care if you live or die; you are disposable; your death is worth their “freedom.” 

In December 2020, ten whole months into the pandemic, Governor Phil Murphy of New Jersey posted a morbid but important plea to his state’s youth on Twitter. Asking them to take the virus seriously, he warned: “You may be young and feel fine and not show a symptom, but you’re killing your parents and grandparents.”

The idea that young age and good health provides COVID immunity is rooted in an ableist impression of superiority. Much like how language and attitudes based in racism worm their way into the popular lexicon largely unrecognized for what they are (“gypped,” “uppity,” “long time no see”), many people may not truly be aware of how their behavior impacts the world. Derogatory usage of words like “retard” and “spastic” makes mockeries of people with certain disabilities, and when you can mock someone, you don’t particularly care about how it hurts them. And when you don’t particularly care about the feelings and well-being of other people, you become able to accept and excuse things like systemic abuse, eugenics, and genocide as part of how the world works.

“I don’t know how to explain to you why you should care about other people”

In January of 2017, Republicans proposed abolishing the Affordable Care Act and replacing it with something else. Andy Slavitt, acting administrator of the Centers for Medicare and Medicaid Services during the last years of Obama’s administration, explained the root of the problem: the Republican plan would cut healthcare for “lower-income people, seniors, people with disabilities and kids” to provide a tax cut for the wealthy. Wealthy, healthy people sat around arguing whether or not healthcare is a human right, and how much assistance a government should provide to underprivileged people seeking such care. 

At the very heart of it, this was a debate over what people in a society deserve and why.

Thus came one of the most misattributed quotes in modern history. Lauren Morrill, a YA novelist active on social media, Tweeted: “My biggest problem in these ACA debates? I don’t know how to explain to you why you should care about other people.” An extremely-slightly different version of that second sentence then appeared as the title of a popular Washington Post editorial by video editor Kayla Chadwick in June of that year. The piece delves into the ideas behind the original Tweet, addressing the callousness inherent in America’s individualistic, blood-hungry capitalism: “Poverty should not be a death sentence in the richest country in the world. If you’re okay with thousands of people dying of treatable diseases just so the wealthiest among us can hoard still more wealth, there is a divide between our worldviews that can never be bridged.”

A raging lack of empathy from people in positions of power continues to have devastating consequences for America in 2021 as these politicians’ like-minded followers construct a deadly society for the “other.” The cult of American individualism is killing us, abled and disabled alike. It is an ideology that ignores the collective to assign a moral worth to a person’s perceived self-reliance. Help is for the weak and the weak are undeserving; you should be able to pull yourself up by your own bootstraps. 

This meritocracy promoted by capitalists is a lie, perpetuated by myths of “self-made men” like that of our former president, Trump, who did not, in fact, build an empire alone. With the help of his father’s bank connections and a little bit of tax fraud, Trump got at least $413 million from his father’s work in real estate over the course of his entire life. He was born into wealth, like so many other “self-made” success stories. We can’t all have that kind of privilege, and we can’t all overcome the more difficult circumstances we may encounter while existing in America. Some of us are born chronically ill. Some of us are born differently abled. Some of us are born into systemic poverty where, no matter how much or how hard we work, the game is rigged against us.

Lauren Morill and Kayla Chadwick’s famous statement has resurfaced during the coronavirus pandemic, being most commonly cited as the words of chief White House health advisor, Dr. Anthony Fauci. As America’s leading expert on infectious diseases, Fauci, who became an enemy of the Trump Administration for speaking out against its gross mishandling of the COVID crisis, has been working practically nonstop to combat the pandemic. Through frequent interviews, he attempts to keep the public informed, to educate people on their roles in the battle. This 80-year-old man indeed embodies the passion behind the quote misattributed to him, and is a seemingly unstoppable force behind an effort to make people care.

We live in a society 

On March 7th of 2021, Dr. Fauci warned CBS’s Face the Nation of a potential fourth wave, another coronavirus surge, as some state officials rolled back safety measures in favor of reopening the economy. Despite experts’ warnings, people too eager to “return to normal,” too impatient to wait any longer, rush the process at the risk of the general public’s health. Instead of hunkering down as long as possible until the spread stops, states all across the country have been reopening early just to close down again when the case rates and hospitalizations inevitably spike.

The world’s biggest focus should be, and has (sort of) been, to stop the spread of disease, and that’s the whole reason for the distancing and the quarantines and the sheltering in place. Because, again, the virus can’t kill people if they don’t get infected with it, and they can’t get infected if people already infected with it aren’t passing it on. It sounds so simple, and it should be, but here we are, seemingly unable to lock ourselves down long enough for a myriad of reasons. How else can we lessen the spread of the virus if we aren’t all willing to do our part?

There’s been plenty of talk about herd immunity from the very beginning. In their thorough breakdown of the concept and how it applies to the coronavirus pandemic, the Mayo Clinic explains: “Herd immunity occurs when a large portion of a community (the herd) becomes immune to a disease, making the spread of disease from person to person unlikely. As a result, the whole community becomes protected — not just those who are immune.” A certain immunity percentage (the threshold) must be reached in order for the spread to decline significantly enough to make an actual difference. Achieving this is so incredibly important, but since herd immunity is inherently about the community, the collective, and relies on the majority to protect the minority, the heart of the problem should be apparent:

American individualism is killing us, and I don’t know how to explain to you why you should care about other people.

It’s 2021 and America is scientifically advanced enough to have expedited the vaccination development process through Operation Warp Speed, a program by the US Department of Health and Human Services that built the funds and infrastructure required to perform the research and trials that made it possible. Most vaccines take an average of 10-15 years to develop, and the fastest on record prior to this was the mumps vaccine (which took 4 years) in 1967. Companies Moderna and Pfizer realized a long-theorized vaccine technology in the race to provide a COVID vaccine, and the rest is history. Very incredible, fascinating history that we are living.

Emily Landon, a specialist in infectious diseases at the University of Chicago Medicine, discussed the effectiveness of the coronavirus vaccine, saying:

“Vaccines make you immune, not invincible. The COVID-19 vaccines that are currently available in the US provide remarkable protection against the SARS-CoV-2 virus. But, like anything, they’re not 100% effective. Current data show the mRNA vaccines are about 94% to 95% effective. That means there’s still a chance people who’ve been fully vaccinated could contract COVID-19. While we know people who’ve been fully vaccinated won’t get as sick as they would have without a vaccine, you could still pick up a mild or asymptomatic case of COVID-19. If that happens, you’ll be able to spread the virus to people who haven’t been vaccinated yet.”

So now one of the biggest hurdles in the way of achieving herd immunity has become convincing the majority of the American public to get properly, fully vaccinated. The fairly recent wave of anti-vaccination attitudes prior to the pandemic certainly don’t help us now. The Heathline page on Understanding Opposition to Vaccines addresses many general concerns, but my focus falls upon perhaps the most common misbelief about vaccines: the long-disproven idea that vaccines cause autism. Just over a decade ago, in February 2010, the paper that started it all was retracted by the British medical journal that originally published it. The CDC itself has repeatedly studied the specific concern about the mercury-based preservative, thimerosal, and found no link between Autism Spectrum Disorder and vaccines that contain the ingredient. This specific worry is completely unfounded.

But even if it wasn’t… well, I really couldn’t say it better than Samantha Bee did in 2019: “DON’T TREAT AUTISTIC PEOPLE LIKE THEIR EXISTENCE IS WORSE THAN A PANDEMIC.” This wasn’t even about the coronavirus. She was talking about the Anti-Vaxx movement’s part in the return of previously-eliminated, totally-preventable diseases like the measles. The original (fraudulent) “study” was specifically about the MMR vaccine for children, but that hasn’t stopped people from throwing around the blanket statement that “vaccines,” any vaccine, could potentially cause autism. That “vaccines,” any vaccine, could potentially cause any adverse reaction that would be, in their minds, worse than death. Because that’s what it boils down to. Ableism will convince a parent that a disabled child is less appealing than a dead one.

It’s horrific, and I’m tired.

UGH

There’s so much more I could say. There’s so much more that I want to say. Not just about the ableism and the individualism, but about all aspects of the deadly selfishness humanity can be so prone to. These things fuel the attitudes of many people who refuse to wear masks, social distance, and/or get vaccinated. See, ableism is not the only explanation for how we ended up here, and why we are still here, but it plays a bigger role than most may realize. The chronically ill, the disabled, the neurodivergent, and the elderly so often get the short end of the stick, sacrificed for the freedom of everyone else to be careless.

I’m not entirely sure how to convince anyone to care about other people. The closest I can get is an appeal to the selfishness inside: caring about other people can be good for you, too, buddy. If you can’t be good for goodness sake, be good because you also can’t really, truly go it alone. Maybe you’ll be lucky. Maybe you are already so privileged that you will mostly be fine. But COVID doesn’t care how young and active you are. You cannot argue with a virus.

May the odds be ever in your favor, I guess.

“Maybe death is the great equalizer, the one big thing that can finally make strangers shed a tear for one another.”  Mitch Albom, Tuesdays with Morrie

About the author

K. Cassidy

K. Cassidy is an agender Chicanx playwright and short-story aficionado based in West Oakland. With their MFA in Creative Writing, they like to portray queer identities, people living with invisible and mental illnesses, and, sometimes, werewolves. They main Waluigi in Mario Kart.