The silenced voices of COVID-19

This piece is a condensed and updated blurb from my book, Spin Doctors. It was prepared for publication but then sunk by a zealous copyeditor for not being well-enough researched.

In the years since COVID-19 first introduced itself to us, the virus has impacted disabled people more deeply and more profound than it has impacted non-disabled people. As such, disabled people should have been front-and-centre: from job supports to housing, from essential work to income supplements, from vaccines to food security, from analysis to advocacy, there was no group more impacted than disabled people.

But this was the greatest failure of both politicians and journalists as they explained the pandemic in their respective ways: disabled people were almost entirely absent from political discussion. This absence wasn’t merely a lack of attention or resources. It was intentional; a cruel, glaring example of how ableism in Canadian society works. Even if they were more impacted by COVID-19 than anyone, there was no attempt from political leaders to place disabled people at the centre of their COVID-19 response. Neither was there much attempt to place disabled people at the centre of media stories. They were silenced, obscured, ignored and intentionally forgotten.

In one of the few articles from the early days of the pandemic that centred disabled Canadians, Michelle McQuigge from the Canadian Press examined how disabled Canadians were experiencing the pandemic, emergency measures and lockdown. It was March 18, 2020; the economy was gradually closing down and Canadians everywhere were reading what they could find to learn about this new virus. That is, if it was available in a format that they could read. The format of documents or presentations provided by governments were not always accessible. McQuigge wrote that a consortium of deaf and hard-of-hearing Canadians had been lobbying to ensure that live briefings from the federal government be simultaneously interpreted in American Sign Language and Quebec Sign Language. By that point, their briefings were not interpreted live and neither were many provincial or local government briefings, leaving 365,000 Canadians without the opportunity to understand the daily government briefings that came to define daily life under the first lockdown. Access to information at a time when the news was changing so quickly became a barrier for people who could not access information that wasn’t put out in accessible formats — threatening to further marginalize many Canadians.

There were so many ways in which disabled people faced the worst of isolation during the first lockdown. From programs being cancelled to widespread masking that made it impossible to read lips, the rapid and blanket economic shutdown did not consider the needs of disabled people. And no governments made any significant effort to try and protect the locations offering community supports, which might have been able to continue. For some people, services were cut or strained due to changes within hospital systems that prioritized clearing space for COVID-19 patients.

It isn’t as if disability activists have been silent. They've consistently called for more direct financial aid, more supports, more PPE and other supplies to be sent to disabled people. Many people condemned the fact that financial support program the CERB negatively interacted with provincial disability payments, leaving disabled people with less than non-disabled people in pandemic aid. Each time there were vaccine rollouts, disabled people had to fight to get access to vaccines on a time frame that would ensure that those most vulnerable to severe disease from COVID-19 had vaccine protection sooner.

Disability theorist and activist Gabrielle Peters has called for all of this and more over the past two years. In a post that she wrote on March 20, 2020, she wrote, “Well the simple truth is everyone would be fairing better today if everyone had listened to and included disabled people all along. We are the original and best adapters; the hackers before there were any computers to hack. We see the cracks and sitting in the margins gives us the perspective to tell you when the mirror is level. You should have been listening all along but can you hear me now?”

Peters was writing against a backdrop that was about to turn deadly. By April 24, 2020, 5000 people had already died in Canada, a majority of who lived in long-term care. At Participation House in Markham, an outbreak tore through the facility and infected 40 of 42 residents and dozens of staff. Seven residents died. Residents of Participation House live in individual rooms grouped into pods, each with a common space. During March 2020, personal care workers were not limited to a single pod: over the course of a shift, they would move through various pods giving care to residents. It was a set up that was dictated by a lack of funding: Participation House didn’t have enough money to hire enough personal support workers (PSWs) to work in a team and stay with a single pod of residents. As a result, workers had close contact with multiple residences in different pods, thereby allowing infection to spread more easily.

After COVID-19 was detected within a facility, the most common, immediate action taken by staff within residential care was to isolate residents. This created confusion and made isolation even worse for the residents of these facilities. Disabled children and adults living in congregate care settings were ignored completely, plunging families into despair and forcing facilities to interpret policy directives without extra funding.

Pamela Libralesso’s son, a bright and active 14-year-old who lives in a group home in Barrie, Ontario, couldn’t see his parents for a staggering six months because of the Ontario government’s group home COVID-19 policies. Even once he had been vaccinated against COVID-19, the restrictions that remained in place were more severe than elderly residents of long-term care. Her son wasn’t even vaccinated as part of a congregant care home strategy: Libralesso had to arrange for him to have his vaccine herself. She challenged the parental visits rule at the Ontario Human Rights Tribunal and won her right to see her son.

Not only were many disabled people excluded from accessing information, their families or their regular supports, they were also shut out of most of the federal government’s massive aid package. Canada’s principle financial benefit, the Canada Emergency Response Benefit (CERB), was only available to individuals who had made more than $5000 in 2019. There was a special allowance given to students with disabilities or dependents, which increased the four-week student sum from $1250 to $2000. But otherwise, there was no aid for disabled people who were not working or whose income was too low (or too high). On October 30, 2020, the government disbursed a one-time $600 payment to disabled Canadians who were eligible, an amount so low that it was an insult.

Even though journalists and politicians ignored disability, disability was talked about a lot. It was just couched in different terms. The way in which the disease was described was deeply ableist and journalists and politicians regularly indicated that people should be more or less concerned about COVID-19 depending on how far from “healthy” they found themselves.

Rather than discussing disability directly, the word comorbidity stood in as a descriptor, an explainer and even a justification for why some people died from COVID-19 and some did not. And then, when people who were “healthy” died from COVID-19, journalists paid special attention to their cases, signalling to the population that on the hierarchy of who was most at risk, the folks who had more comorbidities should have taken more care.

Except there was no special care given to these individuals, and so as medical terms swirled above the discussion, disabled people who had comorbidities had the lion’s share of the responsibility to keep themselves safe from COVID-19 with few to no resources to be able to actually do this.