PERSONAL

Society’s Adapting To Isolation. As A Disabled Person, I Hope The Changes Stick.

COVID-19 means accessibility has suddenly become everybody's priority. It should stay that way.

04/13/2020 16:53 EDT

By the time Prime Minister Justin Trudeau held a press conference announcing that Canada was closing its borders and Ontario Premier Doug Ford declared a state of emergency across the province, I had already been cooped up inside my Toronto home for days. It was not because I had taken prescient isolation measures to slow the spread of COVID-19 — it’s because I am disabled and social isolation is a lifestyle that I have long been accustomed to.

My disability causes chronic pain and fatigue, and can be unpredictable. But I only came to realize just how isolated I had been living when my abled friends began to cancel plans and stay in every night. It was especially tough seeing them navigate the social and emotional repercussions of isolation for the first time, knowing my own experience just weeks before wasn’t met with the same level of understanding and accommodation.

Mari Ramsawakh
Sharing a quarantine outfit during isolation.

I hope that when social distancing comes to an end, that non-disabled people will take a few lessons away from this, and the weeks ahead will prepare everyone else for how to include me — and people like me — more fully in society when this pandemic is over.

A 2019 study found that 38 per cent of disabled-identified Canadians and 27 per cent of Canadians with mobility challenges who don’t identify as disabled experience high levels of social isolation and loneliness. I can tell you this loneliness feels manageable on the first (or even 14th) day of a painful flare-up, but every passing moment takes a mental toll.

For me, April in isolation will play out a lot like my February and March. I leave my house about once a week to gather necessities. I may not feel human contact for up to two weeks at a time, and never really know when I might be able to spend time with others. And I’m no stranger to cancelling plans for the sake of my own health. 

I have worked from home since leaving a full-time office job because of health problems, and almost exclusively seek workplaces that allow remote work. I found that as soon as I made working from home a requirement, I received fewer and fewer calls back from interviews. I spent years on social assistance to make ends meet during the months when I couldn’t get enough work to cover my bills.

It really highlights how little our experiences as disabled and marginalized people matter, until our experiences become universal.

I make trips to the grocery store as efficient as possible. My cupboards have always been full of pasta and canned food, and my freezer is full of frozen veggies. I know it could be weeks before I could physically handle a follow-up trip to the grocery store (let alone be able to cook the produce I did end up buying). This is an experience I share with other disabled people, as we’re more likely to be unemployed and to live in poverty, according to Statistics Canada

Now these challenges are becoming just a little bit easier to deal with (depleted grocery stores from panic-stricken shoppers aside), because now everybody is affected. Though I may not be eligible for Trudeau’s pandemic benefit — it’s tricky proving I lost freelance work due to COVID-19 — the benefit is twice the maximum entitlement available to me through social assistance. Everything from social gatherings to work suddenly takes place online. Grocery stores have resorted to online delivery and pick-up orders.

It really highlights how little our experiences as disabled and marginalized people matter, until our experiences become universal.

‘Inaccessibility is and has always been a problem’

“Community care,” or interdependence, is the belief that people should rely on one another rather than individual efforts for their well-being, especially in the absence of larger structural supports.

Before the pandemic, community care is how I and many in the disability community survived. I’ve had friends help me with chores, find me work, order me food, send me money, and drop off groceries when I’ve been too sick to work or take care of my home. In turn, I’ve shared money when I’m on longer contracts, helped connect friends with job opportunities, and contributed my editing and writing skills.

Everybody needs this kind of support when we’re facing collective anxiety and trauma.

So when social distancing became government-mandated, the disability community was well prepared to look out for one another. Two different friends who also do work in disability activism check in on me and offer to drop off groceries. Others arrange phone dates and regular check-ins, same as they did when I last found myself isolated at home, physically weakened by a particularly brutal winter.

While they may seem like simple gestures, these instances keep me grounded and offer relief amid a pandemic. Everybody needs this kind of support when we’re facing collective anxiety and trauma. 

My mental health is actually improved for once, largely because I don’t have to worry about cancelling plans when friends and I can meet virtually. I have spent so many nights curled up on the couch, trying to manage a sudden pain flare with a cocktail of painkillers, topicals and medicinal marijuana, instead of going out with friends. And it would devastate me every single time.

Now, between the memes and my friends’ Instagram stories where they languish over the existential boredom of being forced to stay at home, everyone seems more sympathetic and eager to lend one another support. I see my abled friends sharing resources, checking in on their friends, staying in virtual contact, and finding ways to collaborate while still being far apart.

I hope this attitude outlasts the pandemic.

I hope that I never have to hear “I wish I could stay home all the time” ever again, and instead see more people checking in on their disabled and chronically ill friends.

I hope that it won’t be the end of live-streamed events and group video chats. 

I hope that it will bring the end to fighting employers for accommodations like remote work.

I hope that it will teach us not to only value each other based on how much we “contribute” to the economy, and end the way we punish those who aren’t able to work or are excluded from “higher-skilled” jobs.

And I hope it pushes people to recognize that social isolation and inaccessibility is and has always been a problem, and that we’ll see schools, workplaces and events become more accessible.

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