Health

Quarantine Is a Nightmare for People With Disabilities

'We’re overlooked until it comes time to decide who is going to die.'
April 16, 2020, 9:30am
people with disabilities
Andrew Gurza and his sister. Photo by Graham Isador

Andrew Gurza hasn't been out of his apartment since October.

Gurza has cerebral palsy and uses a power wheelchair to get around. Colder weather, snow, and road salt make the streets difficult to navigate for the winter months. Usually at this time of year Gurza, who works as a disability advocate and hosts the Disability After Dark podcast, would be taking full advantage of the warmer spring weather, but then the coronavirus hit.

"There’s a comfort level that everyone is doing this right now," Gurza said. “This is a great time for disabled thought leaders to teach non-disabled people who are experiencing isolation some of their skills...understand that staying inside is a way to keep yourself safe. And, if you want to, maybe take this opportunity to slow down.”

What’s been harder to come to terms with is the lack of support Gurza feels from the government. Many of the issues that people with disabilities face—accessibility, above average levels of poverty, ableism—have been exacerbated by the onset of COVID-19, said Gurza. Prime Minister Justin Trudeau has been updating the country on Canada’s response to the virus, but he's yet to talk to disabled communities directly.

"We’re overlooked until it comes time to decide who is going to die," said Gurza. “Disabled Canadians aren’t being included in any of the relief packages right now. They’re not being offered additional support. But we’re the ones who are the most vulnerable to this virus. We’re also some of the most vulnerable in our employment. I would like to see a press conference specifically addressing the disabled community.”

Last week Carla Qualtrough, Minister of Employment, Workforce Development, and Disability Inclusion, announced the creation of a COVID-19 Disability Advisory Group that will offer advice on the “real-time lived experiences of persons with disabilities during this crisis.”

VICE reached out to Qualtrough with an interview request. She was not able to speak with us, she did refer to a previous public statement addressing issues faced by the disabled community.

Some people with disabilities are worried about what happens now, especially if they get sick. There is troubling evidence that they may be denied access to ventilators due to biased quality of life assessments. There are also concerns about the rising costs of living during physical distancing and how to navigate their day-to-day if access to transit and caregiving gets cut off.

Effie Biliris has been attempting to help people with disabilities adjust to the new normal. Biliris is an accessibility coordinator for the ReelAbilities Film Festival and a peer support coordinator for The Everyday Friends Social Network, a Toronto program for young adults with disabilities to socialize and connect. Biliris said one of the biggest challenges for the people in her programs has been maintaining routines they've come to rely on.

"For a lot of the participants everything has been thrown up in the air," said Biliris. "A lot of things they’ve come to rely on have been put on hold without a sense of when they’re coming back."

To ease some of that challenge the Everyday Friends Social Network has taken its program online, organizing a daily social. It has also added film nights and online lessons for improv and music.

Biliris said the best way to accommodate people with disabilities during the pandemic is to take time and actively listen to their individual needs.

"Everyone’s experience with disability is different. Even the people who have the same disability might experience it in different ways. Having an open mind and being adaptable to situations is important," she said.

For accessibility consultant and game developer Cherry Thompson, supporting the disability community means making spaces where they can openly talk about their experiences. Thompson is autistic with ADHD and has Ehlers Danlos Syndrome, which affects their organ function and causes chronic pain and fatigue. Thompson’s condition started to really affect them in their late 20s, resulting in many trips to the hospital and a lot of time in doors. During this period they relied heavily on Twitch for entertainment and company. Later they started a Twitch stream and an associated Discord group for people interested in disabilities and video games.

“My community became a home for people who struggle with isolation, or disablity, or queer issues. It’s always been like this, so we just kind of naturally rolled with the pandemic,” said Thompson.

For Thompson, embracing their tight-knit community has been pivotal to dealing with the pandemic. They’ve also been grateful for the support of their partner who has helped with a lot of everyday needs.

While the circumstances feel new, Thompson said many people with disabilities are more accustomed to relative isolation because it is something they’ve been dealing with for a long time. The fact that people without disabilities are also experiencing isolation has softened the blow.

“Because everybody is in it, people seem to be dealing with it much better. They’re actively trying to stay connected and reach out,” she said. Compared to when she was hospitalized, “It’s a heavier kind of isolation....but everyone trying to talk to one another helps,” she said.

Disabled producer and performer Ophira Calof is channelling their feelings and frustrations into offering “Crip Tips” on her Instagram. The tips work as friendly suggestions for both people with disabilities and able-bodied people to get through the pandemic, like bowl popcorn being less messy than bag popcorn and rearranging your space to give new perspective. Offering the tips lets Calof share their experience of dealing with difficult times.

“It was my way of finding agency for myself and my disabled friends,” said Calof. “It’s important to consider how we’re all managing with care but also acknowledging that many disabled people are experts at adaptation and uniquely equipped for (the pandemic) experience.”

Graham Isador is on Twitter.

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