Category Archives: First Person

Covid Safety is a Social Justice Issue

I keep looking for a simple and concise article I can hand to someone who just doesn’t understand how social justice and SARS-CoV-2 (Covid) are related. I can’t find one I really like, so I’m writing one.

Here’s a true story. I belong to a Social Justice book club. All of the books we read are about social justice. I am the only member who masks. It’s frustrating. These are good people who really care about others. We study. We read together. We try our best to translate our reading into action that will lead to greater social justice. But I am the only one who masks. The space we share has a window that opens. I enter in my mask, open the window and hope for the best while we discuss our latest book. (This month’s book is “One Day, Everyone Will Have Always Been Against This” by Omar El Akkad.)

My book club knows that I am a person who is chronically ill. I identify as disabled. I have the dreaded “pre-existing conditions.” Because Covid is airborne, most public events are difficult for me. I have to mask indoors, and often outdoors too if I’m in a crowd. As a result, a lot of activities are less accessible to me. I have to weigh the risk in a way others don’t. In part, I have to do this because no one else masks. Theye are busy breathing their germs into the air we share. Despite reports to the contrary, the pandemic is not over. There is no need to use the past tense about it. People still get Covid, but since hardly anyone tests, it’s hard to know how often. Wastewater gives us some indications. I know at least twice a year, others are talking about this terrible “thing” that’s going around that they just can’t shake. I think we all know this; we just don’t want to. Most people I know have had covid three times now. Some have had it six times.

Covid is more than a cold:

Covid is often referred to as a neuro-vascular disease that presents as a respiratory infection. Once the cold and flu symptoms go away, it can keep working on you, leaving problems in every organ, particularly your brain and heart. Covid has been linked to an increased risk of cancer and to cancer recurrence. It has been linked to the reactivation of other viruses like EBV and Shingles. The list goes on and on. Covid causes immune system damage, and the more often you get it, the worse your immune system becomes. You become susceptible to other viruses and when you get them, they often are more severe. And the more often you get Covid, the more likely you are to get Long Covid, that is a strange cluster of symptoms that can leave a person bedbound. It is estimated that worldwide, 400 million people have experienced Long Covid, about 6-7% of adults. This is why Covid has been called a mass-disabling event. At this point, literally thousands of peer reviewed studies show the harms of covid.

It seems like something we should care about.

Prevention:

I understand what it is like to be sick. I’d rather not get sick again, or add to my existing issues. And until we have a sterilizing vaccine, there is nothing that is a 100% sure thing to prevent Covid. Some people suggest that is about 5 years away, but with the gutting of science and research in the US, I’m skeptical. (But officially, I remain hopeful.) Today’s vaccines will help keep you out of the hospital and probably keep you from dying, something that happened to many of Covid’s early victims. Hand-washing is always a good idea, but because Covid is airborne, hand-washing won’t protect you from Covid. The most effective thing to do is to mask with an N95 respirator or better, not a baggy blue medical mask that lets air in. It would also be a grand idea to clean indoor air. How? HEPA grade air filters. There are many. Public buildings could have their HVAC upgraded. There’s also some interesting work being done with Far UV. Even if we could just filter indoor air in schools, hospitals, and health care settings, we would go a long way to making the world a lot less risky.

Why is Covid a Social Justice Issue:

First of all, health is a social issue. That’s why we talk about the social determinants of health. For example, a good indicator of life expectancy is how much money you have. We often discuss health like it’s only a personal responsibility. What did they eat, not what can they afford to eat. You get the picture.

Nevertheless, we live in a “personal responsibility” culture even though we are affected by everything everyone else does and the environment itself. If the environment is polluted, it’s awfully hard to stay well. Health is both an individual and social responsibility. Accessibility is also a social responsibility. We can’t do it alone. For example, we, as a society, build wheelchair ramps because a wheelchair user can’t get very far in a world of stairs and curbs and we can hardly expect them to fix the roads and sidewalks. Some things are better accomplished together. There are plenty of places that don’t bother to create accessible streets and buildings, but thankfully, we still do that. Sticking with the wheelchair example, the cost of wheelchairs is wild. And do you know what a person has to go through to get one fixed? But I digress. The cost of chronic illness and disability is largely borne by the ill person, even in a place like Canada which has universal health care. Illness is incredibly expensive.

People can’t work when they’re ill. Jobs like nursing, teaching, other healthcare work, and many other service jobs are women dominated. These jobs also have many racialized workers. Labour conditions aren’t great, so there are few, if any, paid sick days or short or long term sick leave. We don’t yet live in a world with Universal Basic Income, so who can afford to get sick? Certainly not your average minimum wage worker.

So, to recap, illness is expensive. Sick people are expensive. And we’re living in a time with eugenic and fascist leanings. That means it appears we sick people are a burden and a lot of people aren’t afraid to say so. How many times did you hear the death of a person with Covid justified by the “pre-existing condition” narrative. “But they had diabetes, high blood pressure, they were overweight, had diverticulitis” or any other “itis.” Or old age. Sick people and old people are expensive. And babies. Babies are expensive. Capitalism only really likes people who are “productive.” If you can’t be productive anymore, well, some people think you’re just a drain on society. It seems pretty clear that if you want to fight fascism, you have to fight for the people affected by it most; sick people, old people, babies, and other marginalized folks.

There’s more. Insurance hates paying for sick people. With something as new as Long Covid, getting “proof” that one is ill remains quite difficult. Is Long Covid real? Why yes, it is. But not everyone agrees. And sick people don’t have the energy to get the appointments, the notes, the this and the that to prove what has happened to them is real.

Further, too many people, including most of our governments, are pretending Covid isn’t a thing anymore. Why? Because it’s expensive! Remember CERB? That might be the closest we ever get to UBI. It was glorious. People who got sick could stay home. People didn’t have to fear losing their homes because of the pandemic. And then it ended. Why? Because it was expensive! We were told to “go back to normal.” Public health abandoned its responsibilities. It abandoned us. And this is not some faceless agency. These are people. People working in public health, with a responsibility to tell the truth about the risks we face to our health and what we can do about them. They abandoned us. They abandoned their responsibilities. Worse than that, they obfuscated to the point of lying. Covid is not harmless. Everything is not OK. There is a case to be made that the emergency is over, (especially with the vaccines largely minimizing the worst outcomes) but Covid was never over.

Meanwhile, has anybody counted up the cost of lost work days, lost homes, lost families, lost lives and livelihoods? Someone has done the math. Covid may be responsible for the loss of 1% of global GDP.

It’s important not to fall in with the minimizers. It’s important not to fall in with the fascists. It’s important not to fall in with the eugenicists. They have an agenda, and it’s not a social justice agenda. It’s a corporate and capitalist agenda in which we are only valued as cogs in the machinery of creating profit for billionaires.

Government has a responsibility to care for us, and, I would add, it has the money to do so. After watching literally billions of dollars go to a useless war and the build up of weapons for more war, I will never again accept the excuse that, when it comes to caring for people, it costs too much. There is money. There is simply no political will.

Caring for people is a social justice issue. Let’s care for people enough to help them prevent Covid. Let’s care for the many people who already have Long Covid. Let’s understand the intersections between Covid, other disabilities, gender, race, and class. If you care about marginalized people, about everyone, caring about Covid is part of that. You have to do what you can to minimize the spread of the disease. Do it for yourself. Do it for others.

If you’re out there thinking you’re a social justice warrior and you’re not doing all you can to prevent Covid and make this world a safer place for everyone, maybe you could do better. At least think about it.

Working?

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How is it possible to work right now, to think, to have the concentration to write things down, to do whatever it is we are expected to do in the course of these days and weeks, in the midst of climate collapse, war, genocide, and all the rest? The tough personal stuff, the tough world stuff. But it has always been like this. Always.

So get out there, find some joy to sustain you, take breaks when you need to, and continue your work, whatever it is. Know that I am trying too.

Also, dear subscribers, my subscription notices have not been working. Speaking of working. So look back, maybe read my memory of Stephen Lewis and catch up on whatever you like. I’m hoping this reaches you.

Stephen Lewis. A Great Canadian, a Moral Compass

Six Years and Counting

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March 13, 2020.

My husband and I decided to walk downtown to go see his parents. A long walk, but a nice one. We visited for a couple of hours. I can’t remember if we had tea or just did the usual technology problem-solving that had become a regular part of any visit. When we started the trek back home, it seemed pretty quiet for downtown Toronto. Hungry, we stopped in at Kinton Ramen on Bloor. When we got there, it was almost empty. Unheard of. There were the two of us sitting by the front window and another group of four in the back at a high top. The staff looked freaked out. We looked at each other and ate our ramen. I knew this would be the last time we were in a restaurant for a while. I’m sure the others in the restaurant knew too. By the next day (I think), they were shut down. We hopped on the subway after lunch, feeling the urge to get home quickly. There were about three other people on the same subway car. Ominous. On the short walk home from the station, we acknowledged that this was the last day we would have of going into restaurants and using the subway and… who knew what? Our lives changed just like that. Like Joan Didion says, “Life changes in the instant.” That was the instant.

I, unfortunately, already had lots of practice at isolation. Regular readers of this blog and anyone who follows my work knows I had a car accident in 2016 that left me badly concussed. I was unable to read, write, think too much, deal with light or loud noise or too much of anything. I had been working hard to heal and was making some limited progress. But I have to admit that at first, the slow pace of lockdown life was simply a relief to me. I didn’t have to say no to doing social things. I wasn’t missing anything. It was quiet. There was little traffic. For a long time, restaurants had been too loud and I would wear ear plugs if I went to one. Now I couldn’t go. The choice was taken away from me. Same for movies, concerts and everything else that was part of regular life. So, strangely, I was at an advantage at the start.

One person close to me called on March 15, panicked and crying. She said, “How are we supposed to do this? I can’t do this!” and I thought, “Welcome to the world I’ve been living in for four years.” I didn’t say that. Instead, I made a few suggestions on how to cope. However, panic was her preferred response, as it was for many people. I thought back to the start of my concussion and realized it had been for me too. But I had to panic very quietly. Everyone just needed some time. Occasionally, someone would ask me why I was so calm and I would remind them it was because I was already living a very contained life.

I remembered the first SARS. My friend’s father was dying and she was not allowed to go to the hospital to see him. It was serious. It was airborne. Toronto was in a panic. I knew this new SARS was airborne too (how could it not be?), but even I shied away from the implications at first. I still believed in public health. I followed their advice. I washed my hands and wiped down my groceries. That feels like eons ago. I remember an outcry from people who resented being told to wash their hands. I was absolutely astounded by this. Who doesn’t wash their hands, I wondered? I could not imagine what else people would be unwilling to do for themselves and for each other. Anyway, I assumed that there was a mask shortage and that was why the powers that be were not advising masking as a general practice for everyone. They made unintelligible distinctions between aerosols and other particles and whatever and it was all nonsense. I wished they would have just been honest about it, admit there was a shortage and ask people to leave supplies for health care workers first. But that was a dream world. Look at what had happened with toilet paper. Masks would have been hoarded the same way.

What I remember most about this time is how Public Health and other authorities muddied the message. The message never got clear again. How hard would it have been to explain harm reduction? The precautionary principle? The need to ramp up production of PPE?

I didn’t want to take medical supplies away from those who desperately needed them, health care workers or other workers who had no choice but to be in close proximity to others, so I started sewing. I gathered every scrap of fabric I could find, raided my craft supplies, found some elastic and got busy. First I made two layer cloth masks, then three, then four, at which point my sewing machine could barely get through the layers. I gave them to everyone I knew, to anyone who wanted them. It was something I could do to help, and I did it. I ran out of elastic. Eventually I found a small craft store that was packing orders for people and offering door stop pick up. With my elastic supply replete again, I kept sewing. Once masks were plentiful again, and no one on the “front lines” was going to run short, I started using N95s. Cloth masks are better than nothing, but not the best. I wore N95s all the time indoors in public. I’ve never stopped.

In the beginning, I wondered when I would see my daughter again. In a way, I was lucky. She was working “in the field” as an engineer and had to travel to Northern Ontario regularly. This travel and living in large work camps was incredibly stressful for her. The risks of getting covid were huge. On her way to and from home, she would stay in Toronto a few extra hours or an extra day. We would sit in the freezing cold together in the garage with the door open, masks on. That’s how we had Christmas in 2020. We called it, “The Saddest Christmas Ever.”

Toronto was different than other parts of Canada. Lockdown lasted a long time. Everything except truly essential services were closed. We couldn’t get a haircut. Such a minor inconvenience, but an example. Businesses were in crisis. For months. Rural people had the luxury of space. We did not. So much of what the rest of the country depended on came from big urban centres like Toronto. Those Amazon deliveries were starting from warehouses with masked workers in Toronto. Essential workers. Workers who kept us all going. Workers who had to get to and from home. Everyone breathing. There was a positive sense of everyone doing their part. We went outside and banged pots for health care workers. But people are impatient. It went on too long. The implications of what we were learning (that we actually COULD support each other, that temporary benefits actually COULD be extended into a UBI type program, that less traffic meant cleaner air and a healthier environment, that there were new, technology driven ways to increase inclusivity and so on) would impact everything about public policy. Some people didn’t want that. Most people I guess. It would be expensive, they said, not understanding what might be gained. Getting “back to normal” remained a goal, even though normal was so far back in the rearview mirror it was barely a speck. We were just beginning to understand the long term implications of Covid, of Long Covid, that Covid is a vascular disease that presents as a respiratory disease and continues to do damage long after the cold symptoms are gone. We knew almost right away it affected the heart and the brain. I had already done so much to heal my brain. I did not want to start over.

It wasn’t all bad. I remember on the second day meeting friends outside by Lake Ontario and all of us being completely amazed at the silence, at the clarity of the sky. No planes. No traffic. I had a 4km walk I did almost daily which took me through the Humber River Valley and to Lake Ontario. Animals were coming back. There were so many birds. One day, I encountered a ten point buck. A miracle.

We had such hope when vaccines came.

I don’t have the heart to continue. It is just too sad.

The pandemic changed our lives. My husband found the most enjoyable parts of his job were gone and retired. Early. We were lucky we could do that. People died. Public Health died. We got vaccinated. We left Toronto and came out west. More space. Fewer people. Easier. At least it was for a while. Until Omicron. The variant of variants. The variant that should have demonstrated once and for all why continuing to get and give Covid over and over was a terrible idea. But humans, man. We never learn.

There is chatter about the development of a sterilizing nasal vaccine. Maybe five years away. Imagine if the amount of money that just went into killing a bunch of folks in the Middle East had been dedicated to vaccines, or even to cleaning the air. Imagine.

Spring Cleaning In My Office

Bachelor’s Degree in Applied Desperation

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I’ve made a lot of jokes about the self-directed, involuntary and unwanted medical education I’ve undertaken these past few years. Generally, I am more on the “ick” side than the “interesting” side when we’re talking about biology or bodies. So. Much. Goo.

Anyway, my health has forced me into learning way more than I ever wanted to know.

I used to teach Women’s Health at Mount Royal College in Calgary (now Mount Royal University) and I’ve always been careful to stick to my area of expertise, which is sociology, not medicine. Women’s Health was about the social determinants of health, the impact of sexism, racism, poverty and so on. I have been the victim of gendered bias. More than once. For example, I was told for two years that a strange group of symptoms were about peri-menopause (I was 37) but I actually had cancer. Frustrating. And I’ve unfortunately had the experience of having iatrogenic disease, that is, disease caused by medical intervention.

Nevertheless, I’m not distrustful of the medical profession; I’m generally thankful and in awe. They know so much. But they do make mistakes. No one is perfect. I’ve learned to understand our doctor/patient relationship as a partnership. We’re a team. I have responsibilities in all of this. So I learn.

Oh, and I forgot to mention, I’ve also co-edited two quasi-medical anthologies with E.D. Morin, one about menopause and one about concussion and brain injury.

All this is to say, I’ve learned a shocking amount about various conditions, medicines, cancer, chemo, radiation, brain injury, neurology, hearts, lungs, blood, epidemiology, virology, and more. I read. I read huge medical studies. Generally, I understand them. I know the difference between a good and bad study. I look for what is peer reviewed.

I’ve learned all of this on an “as needed” basis. The order I’ve learned all this in is certainly not what any medical school would recommend, and I am no doubt missing some basics (like high school biology).

I got to thinking: what would I call this body of learning if I were empowered to give myself some kind of formal recognition of it? A Bachelor of Ad Hoc Diagnostics? I can’t help but notice the degree would be shortened to B.AD. That made me laugh. Then I got thinking about what else B.AD might stand for.

Bachelor of Applied Desperation comes to mind. Necessity is the mother of invention, but so is desperation.

I think I’m finally able to press pause on this ongoing degree. I’ve just been cut loose from two different doctors in the past two days. My life is getting simpler again. On to learning something else. Yay!

Jane Cawthorne

Writer and Editor