A Pandemic of Grief, Loss and Frustration

Written by Robin Arnott, Aaron Kellet and Cindy Scott

December 16, 2021

    Welcome to the Covid-19, it’s terrible, nasty. 

When Covid-19 started to spread during the first wave, all of us had to come to terms with a multitude of changes. Now that we’re well into the fourth wave and the situation is constantly shifting, feelings of grief, loss and frustration have stayed with us. “Welcome to the Covid-19, it’s terrible, nasty.” said Cindy, in a recent phone call between group members.  The DiStory project is composed of researchers, survivors labelled as having intellectual disabilities who were institutionalized at Huronia Regional Centre as well as self-advocates from the younger generation. We examine what it is like living in the wake of the institution’s harmful legacy. Throughout the four stages of the pandemic, we have had open discussions about our experiences. Our vibrant meetings and workshops have been replaced with individual phone calls.

Closed sign on store window.
Figure 1: Photo by Artem Beliaikin from Pexels

Many of us are still grappling with the way the pandemic has been handled by different levels of government, including limits on where we go, what we can do and the need to show Proof of Vaccination to enter certain spaces. We have had to make difficult decisions, such as assessing risks before we go anywhere, and whether or not to get vaccinated. We are facing all of these challenges all the while being isolated from one another.

During the first wave, several group members had trouble trusting the government’s decisions. For instance, Antoinette said “The government is not right half the time.” Marie added, “Well you know it’s hard to trust anybody because of the way they treated us in the past.” Others have questioned political motives, such as Doreen who said “I think the government is trying to get money out of this, the government is a business. If they did find a cure they wouldn’t get the funding.” In the fourth wave, Cindy spoke about what she has observed from politicians over the course of the pandemic: “The government should be ashamed of themselves. They are saying ‘stay at home be safe, don’t go out.’ They are showing themselves on TV shopping and working, they are the ones who should be staying home. People need to recognize this and make the right decisions themselves.”

    Well you know it’s hard to trust anybody because of the way they treated us in the past.

Man with arms and head resting on bent knees. He is leaning against blank white wall. Wearing a brown sweater and white pants.
Figure 2:  Photo by Alex Green from Pexels

Community surveillance and restrictions based on vaccination status can trigger anger and frustration in those who are still uncertain about vaccinations. As we progressed into the third wave, Pat said “It’s good that we should all get vaccinated but I still think it should be a choice. I’m not impressed. It’s an infringement on our freedom.” Cindy also expressed frustrations, saying “I’m tired of needles and social distancing. It’s wrong to tell people to stay home. We need food and medication, things like that. We can’t see any people or go into a grocery store. I’m tired of wearing a mask, you can’t even breathe.”

Photo by Frank Merino from Pexels

Aaron did not have much of a choice of when he could get vaccinated, which was frustrating, however he was grateful that everything was OK. He said “I had no choice but to get the vaccine on a work day. My worker at community living had to contact my work to let them know I’d be late. I would have preferred it not to interfere with my workday but they were alright with it in the end. It wasn’t my fault for being late.”

To say that this has been a difficult time would be an understatement.  “It’s a terrible thing to experience, I think that it’s terrible. First children can’t go to school because the government said you shouldn’t, then they say you should. They say take needles, wash hands, wear a mask, when is this going to be over?” Fortunately, some are able to keep the end in sight, such as Aaron, who shared: “Now, I’m starting to think things are beginning to change. Toronto doesn’t feel like as much of a ghost town anymore. I am just hoping for a miracle. Things can and will be changed. And I always tell myself ‘It’s not a forever thing.’  I have always been optimistic about things. I like to think about the positive side of things, not so much the negative.”

    Things can and will be changed. And I always tell myself ‘It’s not a forever thing.’ 

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