Rochelle Walensky said it's comforting that the only people dying are the ones with comorbidities. Fauci said it's inevitable that the vulnerable will fall by the wayside. Biden said he doesn't think of the coronavirus anymore, even though people with chronic illnesses and other vulnerabilities would love to not think about it but our lives depend on it and our leaders and communities fail to do enough to protect us. Since the beginning, chronically ill people have had to hear the ableist comments like "don't worry, only people with underlying health conditions die" (subtext: our lives don't matter). I posted an article about a local nursing home outbreak and an acquaintance who happened to be an employee there commented to say "old people die whenever they get sick, this isn't concerning." Eugenics didn't end with Nazi Germany, that's one thing many disabled people know well, and it was an important aspect of my education in Disability Studies. I just wish everyone knew this and fought to end eugenic policies or shut down eugenic rhetoric. And I wish the world made space for the grief disabled people feel as a result of the eugenics that surrounds us, that exists in history as well as the present.
It is disgraceful that we are in the fifth year, little progress has been made, the long-term health impact is rarely addressed, immunocompromised people are shut out of public life & called hypochondriacs for trying to protect themselves, and we have a president essentially declaring the pandemic over and refusing to address our second largest surge, all while people repeatedly get COVID infections. Is anyone actually okay with this? The “new normal” we're all expected to accept?
Since I started seeing more liberals and leftists accept the “COVID-minimizing” attitudes previously more common on the right, I have tried to come up with ways to write about COVID that would pierce through the denial. I wish it was enough to ask people to care about the health of those more vulnerable, as well as their own health. Nobody ever thinks the worst case scenario will happen to them. Look at the current death toll. It would be bad enough if every single one of those people had a medical condition or disability that made them more vulnerable, or if they were weaker due to aging. But that's not even the case. Do you think every single one of those people expected to die? Do you think all of their family members thought of their loved ones' deaths as inevitable? Do you think every single person with a medical condition, even one that has no impact on lifespan, walks around thinking we will die any minute? No, a lot of lives were unexpectedly cut short. They had future plans that they now can never accomplish. I bet in many cases their family members didn't even get to say goodbye. And yet our society expects their loved ones to move on, and swallow their grief because it'll only remind them of the pandemic they're trying to ignore.
Contrary to the unfortunate messages we often receive from the government and public health, the deaths of able-bodied people don't matter more than the deaths of disabled people. If you think this way, you're a eugenicist. But I do think the COVID deaths of able-bodied people reveal how incorrect it is to think you can get infected repeatedly and be spared from this virus, that it's no big deal to you. Is taking risks now really worth the possibility that you will never be able to take risks in the future? I say this with concern as much as I say it with frustration. It is frustrating to watch people be so misled by our government’s rhetoric about the pandemic. And it is deeply concerning and terrifying to watch people further jeopardize their health and the health of those around them with repeated infections that could at least be reduced with masks.
As someone highly susceptible to viruses since a young age, as someone who was always aware I was considered “less healthy” than my peers, I truly can't fathom the level of hubris many able-bodied people have when it comes to their health. Viruses, epidemics, and pandemics always scared me. I wanted nothing to do with them if I had any choice. But usually I didn't. The viruses would often cause my chronic pain and fatigue symptoms to flare up for weeks. I missed so much school as a kid, and it sucked, but I'm grateful I was given accommodations thanks to my 504 plan. In some ways I wish I had grown up in a time where masking was even considered a possibility, but I had never heard of anyone doing it, and no doctor ever suggested it to me. This brings me to another point, though: kids today aren't actually that lucky. Their parents don't think masks are important anymore. They're forced to go to school no matter how much of a surge is happening, sometimes even while they feel sick themselves. It breaks my heart thinking about any child being put through this, but especially the ones with weaker immune systems or chronic illnesses. I've heard stories of kids being ostracized for still wearing masks after all the other kids stopped, I've heard a story about a little girl buying masks with her allowance and her mother threw them away. During COVID I have chosen to take classes online and wear masks. It breaks my heart that these children do not have a choice, and may potentially end up with Long COVID and other health problems due to the negligence of the government and schools.
It isn't just their own personal health that able-bodied people take for granted and overestimate. Many also think unexpected healthcare emergencies will never happen to them, and that if they do, they can always rely on our healthcare system, which is much more functional in their imaginations than it is in reality. It doesn't take much for our current healthcare system to quickly become even more overburdened in a pandemic. If the emergency rooms and ICUs are filled, what will happen if you're in an accident? Or if you need an emergency surgery due to a new health issue you couldn't have anticipated? The doctors and healthcare administrators who have been downplaying the pandemic and advocating for no masks in hospitals forget how easily this can happen too, it seems. But the vulnerable, immunocompromised, chronically ill people who depend on our broken healthcare system never forget it. We don't have that luxury.
My experience during the coronavirus has been similar to many with chronic illnesses who have been being more cautious: a lot of friends communicate with you less, if at all. We have the internet, which allows for near constant communication, but if you can't go out drinking or to a concert, you'll find you're much lower on their priority list and you may stop existing to them altogether. Their life goes on, your life goes on, but your lives no longer intersect. Many who have chronic illnesses will tell you of this experience happening to them even before the pandemic. They can no longer go out much because of flares, so they become less important or even non-existent to their "friends." They will tell you if you want to find out who your real friends are, get a chronic illness. Many people are understandably devastated to find out friendships they thought were strong will cease to exist the moment chronic illness enters the picture, or when a pandemic happens and you have to suddenly be more careful because of a chronic illness. Why is this? Some of it is just inevitable growing apart, maybe, but I think many of us underestimated the ways ableism can impact our relationships.
When we got our vaccines, many disabled people knew we would still have to be cautious while we waited to see how effective the vaccines were. But the CDC and the Biden administration said we could stop wearing our masks as soon as we were vaccinated - a premature declaration that we could "return to normal," so the impact on the economy might decrease. It appealed to everyone else's sense of individualism they developed growing up in our capitalist society, as well as their desire to leave this pandemic behind, whether it was over or not. Unfortunately, this meant leaving behind chronically ill and disabled people too, but that was a sacrifice many were willing to make if it meant they could go to events, parties, and other public spaces without the "inconvenience" of a mask, which served as a reminder of the pandemic they left behind.
Even social-justice oriented, "progressive" "left-leaning" groups were abandoning masks now that they were not expected to wear them. Most feel no need to require or encourage mask-wearing or even mention any coronavirus precautions. Even worse, while in the beginning I actually could at least attend nearly any event I wanted to virtually, virtual access was no longer considered a necessary accommodation to many organizations. It might not sound like a big deal when almost everything is catered to you, but seeing an LGBTQ organization host events in my community, a rural community that rarely had these events before, and fail to consider accessibility for disabled and chronically ill people even when the virus is surging actually hurts a lot. The result is not being able to participate in these events, because they involve no masking or virtual options. “Community” isn't worth getting sick with a virus that could further jeopardize my health, trigger flare-ups, or give me Long COVID and other problems. But the result is I feel even more isolated.
Requiring masks isn't hard or much of an ask, and it means including disabled and chronically ill people. If the concern is that not everyone has masks, the organization can reach out to a local mask bloc who can help them. There are even mask blocs meant to help rural communities - like the ones in my state. When it comes to concerts, they can require masks *and* reach out to local organizations meant to provide clean air at events - called “Clean Air Clubs.” These organizations are being started by people who still care about COVID and know our governments have abandoned us all and left vulnerable populations to fend for themselves against a deadly and disabling virus. They don't solve every problem we all have during this ongoing pandemic but they're a start in a society full of people with their heads in the sand. They give me some hope and I'm grateful they exist. They create forms of accessibility and accommodations that many organizations are ignoring for the sake of convenience and individualist “personal choice” pandemic precautions.
Unfortunately, like many others, I still have so much frustration and grief. The CDC and the Biden administration further normalized the premature dropping of pandemic precautions in several waves: shortening the length of quarantine, announcing that the vaccinated no longer need to wear masks, falsely declaring it a "pandemic of the unvaccinated," the dropping of mask requirements on public transportation including airports, the dropping of mask mandates in hospitals, every statement that endorsed pandemic eugenics. Don't worry, the Biden administration and the CDC say you can stop caring about the health of your chronically ill, immunocompromised friends, family, community members and go back to brunch without a mask! To healthy, able-bodied people who don't know what it's like to live with chronic health issues, it may be difficult to grasp how cruel these messages are. But every message that more precautions can be dropped sends a message to us loud and clear: our lives don't matter. It creates a larger divide between the (temporarily) healthy people and the chronically ill. Sometimes they'll even say things like "wear a mask if you're visiting an immunocompromised person" - as if people with chronic health conditions are not a part of your community, as if many immunocompromised people don't share homes with “healthy people.”
I hope "healthy" people ask themselves why certain things are happening right now. I hope they ask themselves why so many people are dying, yet our leaders are trying to tell us everything is going back to normal and we should just keep working and spending as if we aren't surrounded by death, lasting health complications such as Long COVID, and the consequences of mass infection. I hope they ask where the idea that they, as "healthy" people, are not vulnerable to disease came from, and why those of us who worry about getting a disease that could kill us or make us sicker are being deemed "irrational." I want to tell them: your good health won't last forever and will likely run out sooner than you think. I also want to tell them they might not be as healthy and capable of fighting off repeated infections or this virus as they think they are now (and there are studies on the harm of repeated infections that back me up here). Taking precautions won't just help the immunocompromised, it will help you too. The pandemic was prematurely declared over so you'll continue to do all that you're considered to be good for under capitalism: working and spending. Under capitalism, we are all disposable, because any of us can become disabled. Protect your health, because capitalism won't, and talk to your disabled friends, family, and community members because they deserve your support and they're the ones who will support you too. I desperately still want to believe in the phrase "we keep us safe," but this pandemic has certainly tested me.
I go on Instagram, and I see people posting pictures of live shows and parties without any masks in sight, a sea of people who likely stopped caring about the virus when the CDC started saying “only immunocompromised, disabled, and elderly people need to worry.” I feel so separate from these people, like our worlds are completely different. I have felt alienated before but never to this extent. As people living with chronic illnesses, disabilities, and other vulnerabilities, we are expected to care about a world that we no longer feel a part of, a world that has left us behind.
Resources I recommend:
https://peoplescdc.org
- info & updates on the pandemic, resources and advocacy
https://maskbloc.org
https://cleanairclub.org/
https://fan-club.neocities.org
- for Boston area events
https://linktr.ee/covidisnotovernh - some links to important articles (this is one I have been working on)
https://linktr.ee/cranemaskbloc - mask bloc for communities in the northeast US
https://linktr.ee/covidadvocacy - this is another good linktree with lots of resources
https://linktr.ee/longcovidjustice/ - Long COVID info, resources, and advocacy
https://thesicktimes.org/ - news coverage about Long COVID
https://www.zotero.org/groups/5006109/covidstudies/library - a library on studies related to COVID
I can’t say thank you enough for writing this. You just put every single feeling I have down about COVID and the government and people’s responses to it. Since 2020, I’ve said many times that I’m not sure how to deal with the fact people either want or are totally ok with me and people like me dying because we’re “less than” as people with disabilities. I think a lot of people think that’s overdramatic but you just gave voice to the fact that it’s not and I appreciate that so much. There’s an LGBT group in my area that I wanted to join too and they only do unmasked in person things. It’s so defeating and the fear of being judged both for being disabled and wearing a mask still is strong. Thank you again for this post.