Reasons to be Angry During a Pandemic
I woke up a few days ago feeling incredibly angry. It is a feeling reminiscent of the months preceding the 2016 election and the weeks following it—that the choices of those around me, the choices which orchestrated the current administration, were a direct attack on my life (let alone the lives of countless other marginalized individuals). I have chosen to believe that those making this choice were not doing so thinking I am disregarding the life of Hannah and all disabled individuals, but surely, surely, doesn’t this ignorance just make it worse?
Before school transitioned to being completely online, I was going to be presenting on a panel for the University of Kansas’ Charla de Merienda program, a program through the Center for Latin American and Caribbean Studies that hosts interdisciplinary discussions about issues and research in Latin America and the Caribbean. With the change to online classes, the panel turned into a podcast, and the title changed from simply “Latinx Bodies” to “Latinx Bodies and COVID-19.” My part of the presentation was over how the current pandemic has illustrated a clear disparity between privileged and marginalized bodies.
An example: the state of Tennessee has policies in place from 2016 detailing criteria for hospital admission during a pandemic. Under the section “Triage Tools and Tables,” (pg 21) there is a list of disabilities that will automatically exclude a person from access to healthcare:
(a) EXCLUSION CRITERIA for Hospital Admission: The patient is excluded from admission or transfer to critical care if ANY of the following is present: Option 7: Advanced untreatable neuromuscular disease (such as ALS, end-stage MS, spinal muscular atrophy) requiring assistance with activities of daily living or requiring chronic ventilatory support.
This is Tennessee, not Iowa, but the acceptance (even the embracing) of this value system is the same across the country, not just apparent in our government, but also person to person (remember that protest sign on social media and the news, “SACRIFICE THE WEAK”?). I found Tennessee’s policy while doing research for the Charla de Merienda presentation. I highlighted “spinal muscular atrophy” and took a screenshot of the page. A few weeks later, I sorted through the images and files crowding the desktop of my laptop and dragged what was no longer of interest to me to the trashcan at the bottom of the screen. For some reason, I let this picture stay.
On March 27, 2020, several disability advocacy organizations in the state filed a complaint with Tennessee’s Office of Civil Rights charging that these guidelines are discriminatory and a violation of several federal disability rights laws such as the Americans with Disabilities Act. It is actions like these that make me incredibly thankful for the disability rights movement and the people who continue to say, over and over, that our lives as disabled individuals are worth living. Seeing my own disease included in a list of criteria for exclusion from hospitals hurts.
Over the course of recording the podcast, we had a rich conversation about who has the privilege to stay home and who doesn’t, the disproportionate effect the pandemic is having on people of color and people of lower socioeconomic status, and the precarity of choice. For example: if you work as a caregiver, a housekeeper, a farm worker, you do not have the choice to stay home. And the majority of individuals working in these fields are people of color, including undocumented individuals.
Clearly, the illusion of choice is just that—an illusion—for some individuals. Why, then, don’t we have systems in place to support those workers who are actually essential, and other systems in place to support those who need to work, but who should be staying home? Because we have never cared about this before, as a country. Because the terms ‘welfare’ and ‘entitlements’ are dirty words in our culture, laced with racism, ableism, and sexism. And because those who have the privilege of making a choice do not recognize this privilege and therefore do not act on it. This, I believe, will be our great undoing.
Other things making me angry right now:
- My friend works at a nursing home in Kansas. The nursing home has inadequate policies protecting their workers and residents, although they seem to be between a rock and a hard place–nursing homes are always short staffed and the work there is undervalued. My friend is doing her best to take all necessary precautions so as not to bring anything into the nursing home where residents are at an incredibly high risk, but there is only so much she can do. Her roommates are working, one at McDonald’s, something they don’t have much of a choice in because, again, McDonald’s has been deemed essential.
- I still cannot wrap my mind around how easily some people have access to unemployment while disabled individuals have to continue to fight tooth and nail for the funding they need to live, such as personal care attendant hours and Supplemental Security Income. The fact that I will have to get my next injection of Spinraza, the treatment drug for my SMA (a disease that falls under exclusion criteria #7), without the usual help of family and friends due to guidelines limiting the spread of the virus. The fact that my grandma still cannot get her hip surgery and has to endure copious amounts of pain. The fact that, meanwhile, businesses such as ice cream shops and bowling alleys (bowling alleys!) reopen, and my neighbors continue to have friends over and work done on their house and yard. Is this what “essential” means, then? What would happen if our priorities were a bit less fucked and we closed everything else down so that people who need healthcare right now can get it safely? I know that opening hospitals is much more complicated than this due to a shortage of PPE and the fear of not having enough beds for COVID-19 patients. But shouldn’t we, as a country, have been better prepared for this? Shouldn’t we, for example, have stayed in the World Health Organization? And shouldn’t we have accepted the tests we were offered?
- I read a post on Facebook some time ago (time blurs in a pandemic) saying that no politician signed up for this—didn’t they, though? Or do we expect our leaders to simply keep their heads in the sand? Imagine what could have been done if Trump hadn’t cut public health funding and showed real leadership, among so much more.
I have noticed a belief among my friends and acquaintances over the past few years that the shittiness of our world is out of our control. But I, for the sole purpose of survival, cannot take this to be true. If everything is beyond hope and beyond repair, then what is the point of continuing to go about our daily lives, shrouded in a naiveté born from an “out of sight, out of mind” philosophy? We can create change on a personal and interpersonal level when we dare to honor our anger, our fear, our sadness, AND our hope, specifically hope which stems from discomfort. I want people to see beyond themselves and to have conversations about what’s going on and accept some hard truths about this not-so-great country. There is of course no guarantee that this pandemic is not the straw that broke the camel’s back (piled on top of other horrific happenings like climate change, racial and gender-based violence, and exploitation under capitalism). But I would like to hope that if this is, in fact, the final straw, we will wake up and work together to protect one another, even if we have to make personal sacrifices for the well-being of all of us.
A friend once told me that it was out of the question for her to talk to her conservative friends about politics. I can’t, she had said. This has never been a sustainable outlook, and it sure as hell isn’t sustainable now. If we can do our part personally and by having difficult and honest conversations with one another (remotely), now is the time to do so.
Hannah Soyer is a queer, disabled writer interested in perceptions and representations of ‘othered’ bodies. She is the founder of This Body is Worthy, a project designed to celebrate bodies outside of societal ideals.
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