Choosing to ‘move on’ from Covid is a privilege immunocompromised people like me can’t afford, writes Melody May.

A year ago I didn’t think that wearing a mask in New Zealand would become a political choice. I thought we would never do that. Now, more than half of the people I encounter aren’t wearing one. I hear people complaining that it’s governmental control or it’s inevitable we’ll all get Covid so just relax. I cannot afford to relax and many others cannot either – those of us with “underlying conditions”. It’s that label, that thing you look for in reports about Covid deaths – a justification. It’s the thing that allows us to feel empathy and yet remain comfortable with continued inaction.

Many suggest that we “move on” from Covid. That the world has “moved on” – they aren’t wearing masks. What exactly should we move on from? Covid is still here, and people are dying. In 2020, I had a profound sense of gratitude to be able to call New Zealand home. Suddenly, people knew what immunocompromised meant. I no longer faced the vacant nod or the terrified back-step when they thought it was contagious. But more than that, my life had value. People made sacrifices to protect each other and the vulnerable. That’s me. I felt a profound shift toward community care. 

The value of independence permeates our culture. And it’s accompanied by rhetoric about preferring death to being a “burden”. This value leaks out of everything from ACC ads to politics. The ideal is so pervasive that most people think it’s innate to our identity. However, many cultures value interdependence as the ideal. For about nine months in 2020, I saw a new future for those with chronic conditions and disabilities. We were not just a burden. Our lives had value. And, I thought this was only the beginning. We’d see that we are all connected, and we’d look after every vulnerable group. We’d start questioning other structures that exclude people and label bodies as expendable to the corporate agenda. 

But then there was a shift right back to where we started. There was the economy to think about. The goals shifted from saving lives to “acceptable” losses. It’s strange to think of my possible death as an “acceptable” loss. I’d be a quantitative footnote in the statistics of history. But I don’t feel my death would be acceptable. I’m a single parent of a fabulous teen daughter. I have years to wonder why she won’t wear a coat and years to torture her – begging her to share just two more hot chips until I’ve eaten half of her treat.

There’s one simple act we can all do to ensure that not only do I go on annoying my daughter, but that Dad continues to tell the one about the fish wearing a bow tie and that Nana continues to bring the strange tangy potato salad to family dinner: masks. I wear one, you wear one – fewer people die. I can go on forcing my daughter to watch puppy videos, and she can force me to learn a TikTok trend. It’s the simplest way we continue to value business ventures as well as people’s lives. Yet this is what some have chosen to associate with a “human rights” violation. As a woman and as someone with a disability, this is the very definition of mind boggling. As a researcher, I’m intrigued.

My PhD research focused on the problem of communicating invisible pain and illnesses. I found one glaring barrier to communication: fear. When we’re confronted with someone who is sick or in pain, our primitive-protective brain intervenes. Our empathy allows us to say, “If it can happen to them, it can happen to me.” The primitive brain first wants to protect us from that illness, but then it wants to protect us from the fear that comes from facing our fragility. So, our brains search for an explanation – a reason it happened to them. It’s what scholars call “the myth of control”. It’s a mindset that those with healthy bodies adopt in order to believe that they’ve successfully controlled their body into health… and those who are ill have not. 

This is why I often find myself in conversations about the curative power of drinking rattlesnake venom or that good-old standby, the vegan diet. This seems to be the problem both with wearing masks and acceptance of “inevitable” deaths. We are afraid. And when we’re afraid we tend to react with our protective brain. We want to be in control. And for some reason the advice to wear masks feels, for some, like an abdication of control. 

However, a healthy body is a privilege – just like any other privilege, you can use it to protect others or you can abuse it. I may get Covid and survive. But I don’t have the privilege of a healthy body. I might have to stop taking my meds so that my body can fight. Or it just might make my illness worse. We know that masks reduce our risk by 56-86% (CDC) depending on type. Yet many people are not only refusing to wear masks, but they’re impatient or even angry about other people wearing masks. This attitude is a luxury only privileged bodies can afford. 

To those who want to “get it and be done with it”. I get it. I wish this thing would be over. This virus made my already complicated life look like a sitcom compared to this dystopia. But please remember, you may get reinfected. I don’t want you to get long Covid and gain the horrid label of “underlying condition”. To those who are trying to regain a sense of control in these chaotic times by refusing to wear a mask: it is your choice to wear a mask. Since it’s your choice, could you choose kindness? Every time I see someone wearing a mask, I assume they’re either someone like me or they care about someone like me. Would this be a label you could be happy to wear? The label that says: I care about me AND I care about others. The label that says: I have a privileged body, and I use it to be kind.