More people are working from one contract to the next—what happens when they get sick?
sara Tilley is an acclaimed theatre artist and writer who recently relocated to Halifax. She’s written 11 plays and two award-winning novels.
She also has fibromyalgia, which comes with a complex and often misunderstood set of symptoms. Researchers believe it’s a condition of the nervous system, impacting how the brain interprets pain signals.
Full disclosure: Tilley is my partner. I’m a daily witness to her intense bouts of body pain. Sometimes her muscles suddenly seize up and spasm, which can cause small kitchen catastrophes. Lately, her involuntary muscle spasms are also coupled with loud, involuntary shouts.
“In the space of an hour, I could have a migraine that changes and dissipates and becomes joint pain, which could turn into sudden feelings of dizziness or unexplainable insect stings,” she explains. “Part of the overall experience is never knowing what’s going to happen next in my body. The only constant thing is that there will be some type of pain or difficulty to navigate.”
Tilley’s symptoms can shift from moment to moment. Sometimes she needs to use her cat-covered walking cane, and sometimes she doesn’t. But one thing’s certain: Tilley’s body cannot tolerate the demands of an ordinary workplace.
Like most artists and freelancers, Tilley has been precariously employed for years: working gig to gig and managing to get by. “It can be hard to make a living even if you’re a healthy artist,” she says. “Most artists can’t make a living just with their art. They have to take side jobs and random contracts.”
In the past, Tilley could land acting jobs to support herself. For instance, she had a small role in the 2013 film The Grand Seduction, which allowed her to write and concentrate on other freelance projects. But while she’s worked in spite of her condition for years, she says her symptoms appear to be intensifying. She gave up on-stage performance two years ago. Her pool of possible gigs is smaller than ever.
In desperation, she applied to the Canadian Pension Plan disability benefits program this past year. “I didn’t have many options, I felt at that time, because I wasn’t able to do the on-stage work anymore due to my health conditions, so main sources of revenue were not available to me,” she says.
Like many applicants, she was refused on her first try. Tilley learned the amount of compensation she would be eligible for, based on her prior earnings and contributions to the Canada Pension Plan. As a freelance artist in the gig economy, a lot of her work doesn’t qualify. She assumed she’d end up in the lowest income category, but hadn’t realized just how low that would be.
“They basically give you about $5,600 a year to live on, and then you’re allowed to make about that much additionally in earned revenue,” she says. “So they’re asking you to live on a little more than $11,000 a year and taxes get deducted from that. So if you think about it, that’s less than $930 per month to cover absolutely everything you require, including housing, food, your heat and light, your phone, internet, and medications, which are a big part of my expenses.”
Tilley has since withdrawn from the disability benefits application process. She’s still better off scraping together freelance gigs. “If you agree to be part of the disability system and you’re in the lowest level, you’re signing up to be impoverished.”
Rebecca Casey is a sociology professor at Acadia University, and recently wrote a report for the Canadian Centre for Policy Alternatives on labour standards in Nova Scotia. “Every year there seems to be more precarious work than before,” she says.
Precarious work is an umbrella term for various kinds of unstable, low-wage employment. Many people who work precariously don’t get employee benefits. Along with freelancers like Tilley, precarious work can include people earning money from “gig economy” companies like Uber and Airbnb, casual workers, and the self-employed. “And then we have a lot more work now that’s part-time, low-wage, on-call or contract,” adds Casey. “This type of work is getting more common now than we might have seen about 10–20 years ago.”
Jocelyn Pringle is another precarious worker in Halifax struggling with chronic illness. Pringle, whose pronouns are they/them, has worked contracts as a theatre technician over the past 20 years. But four years ago, Pringle began experiencing severe chronic back pain. Now their ability to lift heavy objects, drive a vehicle and sometimes even walk is drastically impaired.
Previously, Pringle often had contracts constructing theatre sets. “When you work a gig profession, having a contract that is more than a week long is very exciting and wonderful and makes it easier to plan the other jobs you can take,” they say. “One of the main departments with contracts lasting longer than a couple of weeks is working in the carpentry shop. But I’m no longer able to do those.”
Their bosses are understanding, but Pringle’s receiving a lot less calls for work these days. When we met in mid-October, Pringle said they’d worked three days in the last month. Pringle suspects they’ll soon have to move into another profession, though their only work experience and training is in physically demanding jobs like cooking and theatre tech, and they’re not sure what kind of work their body can handle.
Pringle has looked into the CPP Disability program. But because they don’t have a diagnosis beyond chronic pain, they expect to be rejected. “Even people who do have an actual diagnosis say it sometimes takes up to two to three years to actually get the severe disability benefits,” Pringle says. “And even then, it’s not very much. So it’s almost impossible to live on disability.”
Al Shapiro feels similarly discouraged about applying for disability benefits. Shapiro, whose pronouns are also they/them, contracted Lyme disease from a tick bite in April 2018. Shapiro has a non-permanent, casual position assembling meal trays for patients in Halifax hospitals. As with many precarious workers, Shapiro’s shifts are unpredictable.
“It’s this trying to figure out this balance of not running myself into the ground, but also picking up the shifts when there are shifts to pick up, and not knowing when there’ll be money and when there will not be money,” Shapiro says.
As is the case for many people with chronic illness, Shapiro’s symptoms are hard to anticipate. “Sometimes I’ll be at work and I’ll be limping around because, you know, ‘Oh, my knee just doesn’t work now,’ or ‘Oh, my foot just doesn’t work now,’” Shapiro explains. “And it’s so hard because I feel like there’s so much fluctuation in symptoms.”
Shapiro’s job doesn’t offer sick days, health insurance, or benefits, and Shapiro pays out of pocket for medication and treatments. People with chronic illness often face steep medication costs and if they don’t have health insurance this becomes an even bigger problem. A friend of Shapiro’s with chronic illness once told them they pay $1,500 a month for medications.
“I don’t understand how people are supposed to get money and live who have chronic illness,” Shapiro says. “It’s so hard.”
Tilley, Pringle, and Shapiro are all struggling to make ends meet in precarious employment situations. And while their disabilities greatly limit their earning potential, none of them see the CPP Disability plan as a viable option.
In Casey’s view, the CPP Disability policies are outdated. “I think that we need to start rethinking our policies in Canada to realize that the labour market has changed quite a bit since a lot of these policies were created,” she says. “They were developed at a time when work was much better, pay was better, in the sense of what you could get for your wages. We didn’t see the same level of precarity.”
No one from Service Canada would agree to an interview. In a written statement, media-relations officer Isabelle Maheu says people who don’t pay into the Canada Pension Plan are ineligible for CPP Disability benefits. According to a June 2019 Parliamentary Report of the Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities, this includes many people who work for online platforms in the gig economy such as Uber and Lyft.
Maheu says that CPP disability benefits are meant to supplement other forms of assistance, such as private disability insurance plans, provincial social assistance benefits, Workers’ Compensation programs, investments, and savings. But precarious workers typically aren’t sitting on investments and savings.
According to Casey, many people who rely solely on disability payments are living in poverty. “The government needs to increase the amount people on disability support receive,” she says. “It is not nearly enough with the increasing rent and food prices.”
Tilley is a member of multiple Canadian chronic illness groups on Facebook. She’s made connections with people across the country in similar circumstances, and says the situation is “really stark.”
“There are people losing their homes and going to shelters and, you know, availing of food banks—all kinds of things going on in this country, all the time, to do with people who are on disability who can’t afford to live,” Tilley says. “The cause of a lot of chronic pain, at least in the medical theory these days, is stress related. So to be caught in a loop of poverty is basically making the chronic pain worse. And I think it is a vicious cycle of getting sick so that you can’t work, and then that stress makes the illness worse and worse.”
The June 2019 Parliamentary Report mentioned earlier identifies many problems facing precarious workers in Canada, and recommends income supports that aren’t tied to employment, such as a guaranteed annual income. Casey endorses that idea, along with better opportunities for people who need to work flexible schedules.
“We can all become ill or disabled at any moment,” she says. “We don’t have a good system to support us.”