Opinions in Dialogue: What it feels like to be disabled during COVID-19

In an ongoing pandemic, it feels the world has forgotten about disabled lives

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a crowd of unmasked people with one masked person in a wheelchair in the middle
ILLUSTRATION: Andrea Choi / The Peak

By: Olivia Visser, Opinions Editor & Michelle Young, Editor-in-Chief

It’s been just over three years since COVID-19 was declared a pandemic. Most people in the west spent around two years following COVID-19 precautions. However, many were eager to discard their masks in 2022 and 2023, following the removal of the mask mandate — as if COVID-19 disappeared. While proper counts may have stopped, the virus hasn’t gone anywhere. Some might be lucky enough to avoid severe illness from COVID-19, but others risk their lives every time they leave their homes. What’s it like to be disabled in a society that acts like the pandemic is over?

Michelle: It was very isolating for me to see how fast and willing people were to remove all COVID-19 precautions. Previously available accommodations like hybrid events were quickly discarded in favour of in-person activities and large gatherings — most without any COVID-19 precautions. Many organizations and institutions have completely ignored disabled people by citing “provincial guidelines.” That isn’t enough. Where are disabled people left when no one wants to bother including us or creating safe spaces for us? Since when did leftists decide the government — who has historically been ableist — was the sole authority on whether the pandemic is over? The available data clearly says otherwise. I shouldn’t have to disclose all my chronic health decisions for organizers to decide whether or not to make spaces safe for me. 

Olivia: As much as I’d like to say we’re living in a post-pandemic world, I know this isn’t true. I’m someone with a disability that causes dysautonomia, a form of central nervous system malfunction. My body struggles to regulate basic functions like digestion, memory, sleep, and heart rate. I can’t risk catching COVID-19 again. When I had the virus in 2020, I ended up in the emergency room from chronic illness complications exacerbated by the virus. I still don’t feel like I’ve fully recovered two years later. Despite all this, it seems like my concerns are being increasingly dismissed by others — sometimes blatantly. The number of times I’ve had friends and family members tell me “we have to learn to live our lives again” or say they find it strange I still wear a mask is disheartening. 

Michelle: I think people who are saying “we have to live with COVID-19” are kind of missing the point. We do have to live with COVID-19 — but not in the way these people are asking us to. There is a way to live with COVID-19 that doesn’t involve unmitigated transmission and putting lives at risk. We’re not asking people to stop going to work or schoolwe’re asking for measures against airborne transmission to be put in place so everyone can do these activities safely. 

The rhetoric that the vulnerable, or even just anyone concerned with getting COVID-19, should “just stay home” is exclusionary. We all deserve to participate in society safely. Hospitals and HandyDART transit buses still require masks because “many passengers use the door-to-door public transport service to travel to and from medical appointments.” Even in mandatory spaces, people are becoming careless. There is a general understanding that COVID-19 measures keep the vulnerable safe. However, this assumes that disabled people only exist in these spaces. We are everywhere. Our lives are not bound to medical appointments. Schools, the grocery store, other public transit, shopping malls — these are all spaces we should be able to access safely. Our concerns are not grounded in unjustified anxiety — they are grounded in a true understanding of risk and genuine concern for our health. COVID-19 isn’t the cold or flu, and there is little immunity from previous infections. Long COVID can affect able-bodied people too, so think about what a threat that is to someone who is already chronically ill.   

Olivia: We need to take long COVID more seriously. Long-term complications from the virus are rising. A startling amount of people are now being diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and dysautonomia. These are serious and disabling disorders of the central nervous system that have no cure. I can’t imagine the toll this will have on our already struggling healthcare system going forward. 

Kayli Jamieson — an SFU grad student — was previously healthy and developed long COVID after an infection in 2021. She told the Burnaby Beacon she frequently has to stop what she’s doing to lie down, and says this impacts her ability to work or spend time with friends. Our concerns about COVID-19 should move beyond our risk of death alone, and include the severe implications of long COVID. Do people really not see an issue with 10–20% of COVID-19 survivors developing long-term disabilities? 

Michelle: With age, all of our health will eventually decline, which is why ignoring the vulnerable now is such a missed opportunity. It’s troubling that many healthy and able-bodied people assume they will be fine after a COVID-19 infection. This can be true, but isn’t guaranteed at all. Multiple infections also increase your risk of severe and long-term illness. It is known COVID-19 can greatly affect the immune system well after an infection. At the start of 2020, everyone was willing to mask and protect the vulnerable because I think they understood the risks much better at a time when there were no vaccines. However, many are overestimating the amount of protection vaccines give with a mutating virus. Airborne transmission, presymptomatic transmission, and asymptomatic transmission are often conveniently ignored during discussions of COVID-19 protocols. Social distancing and “staying home when you feel unwell” do not provide enough preventative measures to truly keep us safe from infection. 

Olivia: The sad part is that I don’t think many people are even social distancing or staying home when unwell anymore. I often sit beside people on the bus who cough and sneeze the entire way, and it puts me at risk — but these people don’t seem to think of that possibility. Even if they don’t have COVID-19, have we not learned that we have the ability to protect our community from other viruses like the flu? COVID-19 aside, people shouldn’t be working or going to class when they’re sick with anything. These situations have made me regret not wearing a mask at the start of the pandemic, but I’ve never regretted wearing one since. The stares and snide looks don’t bother me as much as the thought of repeatedly destroying my immune system through re-infection.

Michelle: It’s frustrating that what we have learned through the early days of COVID-19 has quickly been forgotten. Often, sick leave and attendance policies don’t allow people to stay home. At the very least, I don’t understand why these people can’t wear a mask. Long-term, it’s going to be very bad for the workforce to continuously get sick. The lack of policies is negatively affecting all of us, the arguments going around about how disabled people are “privileged” enough to stay home invalidate our experience. First, it is not a privilege to be homebound. There are disabled people who are working in-person and trying to protect themselves to the best of their ability. We aren’t all staying at home. We are wanting to advocate for policies that keep the working class safe

Olivia: Even if I could just stay home, my family members work in public education, face-to-face with the virus everyday. Masks in schools have essentially disappeared. The two times I caught COVID-19 were from school exposures brought home to me. I simply can’t risk catching the virus a third time — I can’t begin to imagine what that would do to my disabled body. Saying we should stop “living in fear” of the virus completely disregards those who have very legitimate reasons to be afraid. If you’re not worried about yourself, could you at least extend some concern towards the disabled population? We know masks work best when worn by the majority; it’s uncomfortable being the only masked individual in the room as an at-risk person. I don’t expect others to mask in every scenario,  forever — but we’re clearly still in the middle of a pandemic, and most people have been quick to abandon all precautions for the sake of their comfort. If people could at least throw a mask on in crowded spaces like the bus or classrooms, it would make a world of a difference to people like me, who can’t afford putting our health on the line. 

Michelle: It would be nice if others could realize there are vulnerable people everywhere. I have found solace in online groups and virtual disabled spaces. I have seen disabled, immunocompromised, and chronically ill people do so much advocacy work over the years. I know a part of it is a necessity, but it’s grueling work to do when so many have decided they can’t be bothered to protect us. It’s already so difficult to be disabled in the face of ableism, especially now during a pandemic but I hope eventually, the gears will shift, and accessibility will be something integrated into our institutions and society.

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