Sick and disabled in the time of COVID-19

Hi. So it’s been a while, hey? The last time I was here was in March, just after COVID-19 had been declared a global pandemic. Just a pandemic, really. I don’t know why we always seem to add the word global, because the WHO definition of a pandemic means that the disease spread is worldwide. The “global” is part of the definition. Saying “global pandemic” is redundant in the way that saying “SIN number” is actually saying “social insurance number number”…

But anyway. That’s the last time I was here. Back in March.

So approximately five years and eight months ago…something like that. Pandemic time is different than regular time.

I’ve wanted to write here since then. Many times. There have been so many important things to talk about, but it’s all just kind of been too much, you know?

As someone who is high-risk for complications of COVID-19, as one of “the vulnerable” in this pandemic, this has been a really challenging time. That’s an understatement, but honestly I can’t condense what this experience has been into a few adjectives. So let’s just stick with challenging.

This has been a really challenging time.

And probably not in the ways that you might be thinking. Yes, isolation is hard, but for so many of us who fall into this vulnerable category, social isolation isn’t really anything new. Lack of control and endless unknowns are also stressful, but again, both of these are par for the course with chronic illness and disability. We’re used to these things.

It’s the blatant disregard and even disdain that people are showing for our existence that is the hard part.

It’s everywhere. Some people are direct and vocal about it. Others are more subtle about it, but they still make it clear through their actions that the lives of disabled people are not worth their inconvenience. We hear it and see it every day.

Those of us who are sick and disabled always knew that these beliefs were out there; we come face to face with them all the time. But the pandemic has made them bolder and louder and put them on display. And brought them closer to home. The pandemic has made it acceptable for people to discuss the pros and cons of our disabled existence, right in front of us. The pandemic has made it acceptable for people to discuss whether our lives are even worth protecting seeing as our lives are also very costly to maintain.

People think how dare we want to keep on living even though we are unable to work and knowing how much our healthcare costs society. Why can’t we be willing to sacrifice ourselves for the good of the economy? For the good of society. For the benefit of the younger generations. Shame on us for being so selfish. As if many of us aren’t part of the younger generations.

Because let me remind you that not every vulnerable person in this situation is elderly.

But why does age even matter? Why are we so comfortable with allowing older people to die? Why does an older person’s life have less value than a younger person’s?

The same reason a young disabled person’s life has less value. Because of productivity, of course. Because our society values productivity above all else, and anyone who isn’t able to work or who doesn’t have the potential to become part of the workforce is a financial burden on society.

We are seen as burdens.

I have spent the last decade of my life wrestling with the idea of being a burden. For years I did everything I could, including burdening myself in a way that often made myself sicker, to not be a burden on anyone else. And while I’ve spent the last few years working really hard at not seeing myself as a burden, it’s still something I struggle with. Many disabled people I know do.

It’s easy to tell someone that they aren’t a burden when you are able to still go about your life mostly as you please. But what about when protecting them comes at the expense of your freedom? What about when keeping that person safe means you aren’t able to go about your life as you please anymore?

We are seen as burdens.

Some people say it out loud. Some people even say it out loud to our faces. Many others are more subtle about it. They won’t say it out loud, they might even actually decry those who are saying it out loud, and maybe they don’t even acknowledge to themselves that they resent us for being vulnerable, but actions speak louder than words. Some people are yelling it through their actions. Others are just whispering it, sometimes so quietly that the average person might not even catch it.

Governments leaving disabled people behind with financial relief. No one caring that we have been left behind. Standing too close to someone in a lineup. Gathering with large groups of people indoors. Not wearing a mask. Having too many close contacts. Not bothering to pay attention to changing public health guidelines. Knowing what the public health guidelines are and choosing not to follow them. Getting upset with the people reminding you to follow those guidelines.

The big things, the small things, and everything in between. But whether a yell or a whisper, those of us who are vulnerable can still hear it loud and clear. Because we know what to listen for.

And we hear you:

Your social life is more important than our lives.

Your vacation is more important than our lives.

Your haircut is more important than our lives.

Your freedom to do whatever you want to do and go wherever you want to go is more important than our lives.

Your lives are more important than our lives.

We get it. We hear you. We hear your words and your actions, your yells and your whispers.

We hear you. And hearing you is hurting us in ways that I don’t know how to explain.

I don’t know how to explain what it feels like to watch people who you know are a higher priority for healthcare resources than you are, cavalierly and selfishly behave in a way that threatens your safety. I don’t know how to explain what it feels like to listen to someone casually discuss with you the ethics of who should get priority access to those resources and have to say, “I’m not old but I’m vulnerable and I also don’t want to die.”

I actually had to say that. I also don’t want to die.

I don’t know how to explain what it feels like to know that there are people who think it’s okay if I do.

So yeah, it’s been a challenging time, being confronted with this on a daily basis. It hurts. It stings. It angers. It saddens. It consumes. It frustrates. It angers and saddens some more. And honestly this is just a piece of it.

I haven’t written about it because I haven’t known how to. And because I’ve been trying not to think about all of this too much so as not to let it swallow me whole.

That’s it. I don’t know how to end this.

Please just care about people. Even people you don’t know.

Keep your distance.

Don’t be racist.

Listen to people with less privilege than you.

And wear a damn mask.

12 thoughts on “Sick and disabled in the time of COVID-19

  1. Thank you for your post Catherine. I needed to read this and reflect how I could do better so that the vulnerable don’t feel the way they feel. Keep doing what you are doing! You do it so powerfully well.

  2. Thank you for these thoughts, so many of which mirror my own. Hope you and yours stay safe throughout this. Sending love and a hug your way.

  3. Catherine, you say you don’t know how to explain your feelings, but your words betray you. Powerfully. And I feel your pain. There’s a saying that’s been going around a lot during this crisis. I’ve even used it myself. “We’re all in this together.” But you see what I see. We’re not ‘all’ in this together. It’s a hard truth. But many of us are. Rally around them. And as always, thank you for your unflinching share. PS: You also said you didn’t know how to end your post, but I’d say you got that right too. You just put it a little more delicately than I might have. Be safe. 

    • Totally – we keep hearing that we’re all in this together but so many different marginalized groups are being disproportionately harmed. It is indeed a hard truth. And ha! The words in my head are a little less delicate.

  4. You have said it all. It is kind of difficult to realise that after your disability has robbed you of your ability to work, ability to have much of a social life, and become too familiar to living in a restricted life, that it is all so unimportant. You are the afterthought, if a thought at all.
    Depressing but not surprising, we are invisible.

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