5 Canadians with Disabilities on the Upsides of Working from Home
"Watching how people with disabilities were left to fend for themselves across Canada during the shutdowns was very stressful."
Corinna Hodgson, 49, piano teacher, Dorval, Que.
I’m a disabled artist, so I know first-hand that this society does not value either group. I had a promising career as a playwright, but arachnoiditis changed that. I was born with neural tube malformations but was fortunate to be ambulatory. At 12, I experienced extreme pain down my left leg and was diagnosed with an unstable spondylolisthesis. I underwent spinal fusion at 14. There were then two years of walking with two canes and then just one, but I eventually regained my mobility. I cracked that first spinal fusion and required a second fusion at 35, but that procedure resulted in arachnoiditis, which has left me with a right foot that is entirely numb and which feels like it is on fire. When I walk, it feels like walking on broken glass.
For two years I saw different doctors, looking for many of whom thought I was looking for drugs. It was only after I had titrated myself off OxyContin that my original surgeon would see me.
I transitioned to teaching piano lessons to children out of my home studio so I’d have more control over my pain management. When the pandemic hit, I was better prepared as a disabled teacher: I already had a policy for offering digital lessons if students were sick, as my health is fragile. With social-distancing restrictions, I easily transitioned to all digital classes.
Those changes came with pros and cons. My kids had to become far more musically literate, learning how to talk about and make notes on their own music, but we lost some ability to work on sight reading. I offered sliding-scale payment plans to ensure no child had to lose the gift of music during the pandemic, and some parents even offered to sponsor lessons for other students who could not afford it anymore. I also navigated a divorce through the pandemic, and the loss of spousal drug coverage from my ex-wife’s insurance benefits. I will say it has been frustrating to see able-bodied people get vaccinated before me.
Nzinga*, 36, Toronto
After 10 years of telling doctors about my health challenges, being gaslit and seeing no relief ahead, I got to contemplating if my life was even worth living. My periods were too heavy to disregard. I once bled through a max tampon and pad in less than two hours, leaving a noticeable stain on a chair that my client had to awkwardly comment on. Even when I switched from a white doctor to a Southeast Asian one, she made it seem like my issue was purely psychological and maybe I just needed to be strong. But whenever my period ended, and I tried to work out, within five minutes, I would be doubled over on the floor in the fetal position because of the pain. Everywhere, from my lower back to my pelvis to my uterus, hurt.
At one point, I was getting blood work done every two weeks, trying to figure out what the issue was. They were considering lupus while I pushed through my swollen belly to complete five-days-a-week, 45-minute long workouts and was still gaining weight. I knew something was wrong, so I kept advocating for myself, as I had developed other unhealthy coping mechanisms to deal with my symptoms. I was concerned about these, so my doctor referred me to a dietitian in her clinic, who reminded me of the healing that could be found in acupuncture. By February 2021, my doctor prescribed antidepressants. I negotiated an ob-gyn referral—but asked that it not be a white woman, unless it was my only option. Finally, I was diagnosed with endometriosis and referred for an MRI.
My symptoms worsened during the pandemic due to my heightened stress levels and workload. After commuting to the office at the height of the pandemic to see clients in person, I transferred to a policy role last summer. The transfer helped, as it eliminated my challenging daily commute. My new role allows me to lie down with a hot water bottle without dealing with colleagues asking questions. Now I can shut down right when work finishes and just lie in bed and nurture myself back to life. I know I don’t have the capacity or strength to withstand that commute and the increased emotional labour demands at the office.
Kate D. photographed by Galit Rodan
Kate D., 41, project manager and gerontologist, Guelph, Ont.
I’ve had speech impediment and anxiety since childhood and deal with upper-body and sensory issues that emerged after a car crash, plus anxiety and depression occasionally. My disabilities can often impact one another. During the pandemic, I had no access to intramuscular stimulation physiotherapy or massage therapy for four months, which exacerbated my upper-body pain and brought on severe headaches. Watching how people with disabilities were left to fend for themselves across Canada during the shutdowns was very stressful. So was a previous job, after horrific treatment from management following the disclosure of my disabilities and the accommodations that I needed.
When I hear we have universal health care in this country, I think of how my costs for CBD oil come out of pocket, to say nothing of how I exhaust my annual coverage for mental health support, massage and physio. It is why I keep relying on a medication that is covered by insurance despite gaining 40 pounds since starting it, because I cannot afford to do otherwise. Similarly, people with disabilities are supposed to be accommodated according to the laws here, but when I had finally worked up the courage to come out to a former employer about how much I was struggling, I was repeatedly dehumanized and demoralized. It mirrors how meagre the Ontario Disability Support Program payments have always been, but the government was able to allot more funding through the Canada Emergency Response Benefit than they ever gave disabled people.
Last fall, I started at an organization that works hard to create a culture of inclusion. They value my lived experience with navigating disabilities, and will continue to accommodate me even after pandemic restrictions end, which is a welcome change. It took me a long time to be honest with myself about my disabilities, this self-acceptance finally allowed me to tell my loved ones and my employers what I need.
Taraneh*, 38, Vancouver, B.C.
I navigate the challenges of bipolar disorder and irritable bowel syndrome. After being laid off from a bakery in Manitoba at the beginning of the pandemic, I did not think a Winnipeg winter would be good for my mental health. So I accepted work as a nanny to two young boys in Vancouver, which also allowed me to be close to my partner. I worked in that capacity for about eight months but eventually transitioned to a full-time writing gig so I could work from home alongside my partner.
It initially felt healing to be with children during such uncertain times, but it eventually felt like substitute parenting, and not in a good way. I felt like I was expected to play the “mammy” role, to be a substitute for the intimate work of parenting. I had to leave.
Now I work remotely for an American company, where we all collaborate on documents online and meet over Zoom. I’m able to take breaks and go swimming, which gets me out of the house for some fresh air and exercise. It also balances my mind, and I feel very calm and focused afterwards.
The state of mental health care in Canada is horrible. Services are often not trauma-informed or holistic in nature, as they are based in the Western model of individualism. Folx are deemed ineligible for care if they’re not on medication. Friends of colour are misdiagnosed because racism impacts perceptions, and doctors often fail to ask about trauma or oppression. But they’ll prescribe medication within an intake session.
I tried what my psychiatrist prescribed, but it made me feel suicidal and numb. Unfortunately, unless you have insurance coverage or can pay out of pocket, mental health services are unavailable. Thankfully, my Sufi cultural services transitioned online and included a free co-counselling program, with a mental health liberation model, which has been very beneficial to me.
Jen Sebring, photographed by Alicia Thwaites
Jen Sebring, 24, health researcher, Winnipeg, Man.
As a researcher with multiple chronic health conditions, including epilepsy and type 1 diabetes, I saw over the pandemic how precarious treatment can be for folx with chronic health conditions. My research area is community health sciences, so I was aware of how much healthcare funding had been cut before the pandemic hit, which exacerbated its impact—programs were critically understaffed even before this crisis. The epilepsy clinic I go to went from operating five days a week to only three, and by October, they had to shut down their diagnostic unit completely—particularly devastating when there was a three-year wait-list to get in.
While the pandemic meant a lot more downtime for some folx, working in health research meant my work expectations intensified. With rapid grant applications for doing research on COVID-19, it has been particularly challenging to navigate an increasing workload while also navigating my own health needs, all while many health services were suspended.
When day-to-day management of my conditions became more challenging without reliable access to healthcare, I had to rely on rescue medications or other supports I usually considered last resort. I was lucky that my supervisor for graduate studies and my department as a whole has been super supportive. Seeing how universities have adapted to remote accommodations highlights how such provisions would have alleviated a great deal of stress for me as an undergraduate student. Even with accommodations from the accessibility office, I felt a lot of pressure to be in class, which contributed to feelings of guilt and shame – there was a real failure of imagination to come up with a solution that worked for everyone. Now we’ve seen that hybrid classes are possible!
When my access to health-care services was disrupted, it helped not having to commute to work: I could engage with research duties in a more meaningful way on my own terms. But working from home isn’t perfect—I deal with the anxiety of feeling as if work is always looming in my home space.
* some names have been changed for privacy