Sometimes I’ll come up with an idea for a blog post and spend like weeks hyping it up in my own mind before I write it. Then, by the time I get to it I draw a complete blank about what to say. This is one of those posts. How do I even begin talking about the elephant in the room that has been here for months now and shows no signs of leaving anytime soon? What hasn’t already been said? Many disabled writers have written about their experiences during this whole situation and brought up a lot of the points that I would want to bring up in this post. Since I don’t want to just be an echo chamber for other (better) writers, I have listed a few of those articles at the bottom of this post.
Today I want to talk about and attempt to quantify what my experience has been like since COVID-19 made its way to the United States. In more specific terms, I want to talk about how it feels to be me right now. (Spoiler: it feels bad).
How RBG Saved My Stuff During Lockdown
Local concern about the coronavirus began in my area in early March. I wasn’t too concerned and assumed it would be like swine flu or something. I think a lot of people did. Some people still do (more on how wrong that is later). When the lockdowns started, I was on spring break. I remember getting the email that they might push our return to campus back a week until local authorities had more of a hold on any potential spread. Remember when people thought that two weeks of lockdown would snuff the virus out? Those were the days, huh?
The day before the stay-at-home order was issued for my area, I thought it might be a good idea to run up to campus and clean out my personal belongings from my locker and my cubby in the journal office. Looking back, I’m glad I did. My brother had gotten me a Ruth Bader Ginsburg mug for Christmas (pictured below) that I had left at school and I just wanted it back. That is the last time I’ve been to campus.
Needless to say, school moved online for me as it did for so many other people, and in the fall we will have the option of coming back in person or taking advantage of online learning again. Because I’m high risk, I will opt for the latter. No real choice for me there. I am lucky that my summer internship with the ACLU of Missouri is allowing the interns to work from home. Having said that, I really miss seeing my friends in person.
But I’d rather miss my friends than be dead.
The Ugly Emotional Truth
At the end of March, one of my favorite YouTubers, Folding Ideas, made a video called I Can’t Stop Watching Contagion that emotionally broke me. If you can, stop reading this right now and watch it. I linked it. The video feels like a stream of consciousness description of the haze that I felt and still feel about this pandemic. For the creator, that haze manifested in him watching the movie Contagion on repeat. “There is an escapism to a story about horrible things,” he says, “because that story is complete. It is bounded. It provides a framework to horror that doesn’t exist in the real present.” So much of my life has been spent trying to force a sensible narrative upon a nonsensical situation, and I think that living through this pandemic (so far) has forced me to come to terms wasn’t the impossibility of that task.
Just less than two weeks after that video came out, my nurse tested positive for COVID-19. She and I both deal with allergies and we both assumed that she just had a flare-up or maybe a sinus infection at worst. But no. I had done absolutely everything I could to follow the guidelines and keep myself safe and was still exposed. This nurse has become a very close friend, so I am so very glad to report that she made a full recovery and is doing well. She did not spread it to anyone, and she continues to wash her hands religiously.
During the week after she received her positive test result, I cannot even put into words the thoughts and emotions I had. Waiting to see if I started to feel any symptoms. Checking in on her constantly. Figuring out what I would do for caregiving while she was recovering. Deciding whether to implement a do-not-resuscitate order in case I caught it and could not make medical decisions for myself. Trying to decide who to leave my stuff to after I die. Coming to emotional terms with the very real possibility of being unable to be weaned off of a ventilator. At that point, many states had policies about how to prioritize ventilator use within hospitals, and want to guess what population was at the bottom of those priority lists? People with disabilities. Every single time I coughed, every sniffle I had, and every slight tickle in my throat shot me to an unimaginable level of existential anxiety. It started to feel like every decision I made was life-or-death. In a way, it was.
“They Want Me to Die so They Can Go Shopping”
It has not been a fun few months for me. If numbers keep going up, it won’t be a fun rest of the year either. It has gotten to the point where I can’t imagine the day that I will go to a restaurant again. I’m sure it may happen, but I can’t see it. I also don’t know if I will graduate on time. I have one year left and since I’m allowed to stay home this fall, that means that I will have one semester left when I might be required to physically go to campus again. What if the numbers are much higher than they are now (as they probably will be) and there is no vaccine (as there probably will not be)? What do I do?
This is where I have a real anger towards people who willfully refuse to take precautions like social distancing and wearing a mask (when they can). The people who pretend to be disabled as an excuse to not wear a mask are absolutely infuriating to me. More than anything, they made me feel dehumanized. They see me as expendable and they use legal protections meant to help me and as props for an argument that could lead to my death. In very literal terms, these people could kill me. So could the policies that prioritize the economy over the lives of people who have died and will die from the coronavirus because they have to go to work. It has become abundantly clear that these policymakers think my life is worth nothing. In the words of one disabled writer, “they want me to die so they can go shopping.”
If you are one of those people who, for example, thought your constitutional rights were being violated by being asked to wear a mask inside a private business, I have some words for you (even though, let’s be honest, someone like you is not reading this blog): How dare you. How dare you deprioritize my life like it’s not worth anything. I don’t deserve that and neither do the people who have gotten irreversibly sick and died from this illness. I know you’re tired of being stuck at home. So am I. But the longer you go around spreading germs, the longer I’m stuck at home. My life matters as much as yours. I have spent my entire life being asked to justify my existence because it is such an inconvenience to other people. This is too far.
Since this whole situation started, I have basically been doing nothing but work. From 9-5, I work for the ACLU. I am working evenings and weekends as a faculty fellow for one of my professors doing research on disability law. I’m also taking an online/evening class that will finish next week. I decided to start blogging again and I’m thinking about starting a YouTube channel too. I have to stay busy or I feel myself slip into despair. I have no control over my exposure or my health right now. I could realistically die before the end of the year. More than that, I need to make an impact. I’m staying busy because I need my life to mean something. At the very least, I want my death to be felt in some way, and not just treated like a statistic for a bureaucrat’s consideration.
Here are some articles on the intersection of COVID-19 and disability that I think are interesting:
- Coronavirus has made it even easier to forget about disabled people | The Guardian
- Smart Ass Cripple: They Want Me to Die so They Can Go Shopping | The Progressive
- Disabled People Have Unique Perspectives On Risks And “Reopening” | Forbes
- COVID-19 and Chronic Illness | Psychology Today
- Coronavirus Proposals Leave the Disability Community Behind | Center for American Progress
- ‘This Is Really Life or Death.’ For People With Disabilities, Coronavirus Is Making It Harder Than Ever to Receive Care | Time
- Coping with disease and disability in the time of coronavirus | CNN
I’m going to end with another couple of thoughts from I Can’t Stop Watching Contagion (which you should still really watch pretty please):
Disease does not have a narrative meaning. It does not have an eye for poetry or twists or closure. The only meaning is in how we respond… Our future is uncertain, beset on all sides by devils, and we can come out better or we can come out worse or we can die and none of us knows which it will be and we’re all screaming at those in power to make the moral choice. To choose better.