Madeline was eight when her body started to rebel against the things she wanted it to do. She remembers being struck with blinding pain in her legs. She crumpled to the floor in the hallway of her family home and sobbed. Her parents took her to a doctor, who delivered a possible diagnosis: Her right leg was shorter than her left, and her spine curved from scoliosis. She never received treatment or therapy, and she does not know why. Madeline, who wanted to be an actress when she grew up, got used to dancing on sore legs.
Just before she started grade 5, she got mononucleosis. After that, she kept getting sick—colds, ear infections and coughs that dragged on. In her mid-teens, Madeline began to struggle with fatigue and weight gain. After high school, she moved to Quebec to study theatre. There, a new symptom arrived: chronic diarrhea, which sent her running to a toilet up to a dozen times a day.
Once she graduated from university, Madeline felt like her career as an actress was beginning to take off. She met with an agent and got her first professional headshots—black and white images showing off her impeccably straight teeth and dark eyes. She moved to British Columbia and starred in community theatre. That’s when she got mono again. Her health spiralled downward: body aches, an endless series of bladder and ear infections, exhaustion.
A doctor suggested a diagnosis: chronic fatigue syndrome, or myalgic encephalomyelitis (ME). It’s a poorly understood condition that some researchers believe arrives in the wake of a virus like Epstein-Barr, which can cause mono. It’s unclear why ME only occurs in some people and what, if any, genetic factors contribute. With ME, the body never seems to recharge to full strength, leaving a person struggling with debilitating exhaustion; postural orthostatic tachycardia syndrome (POTS), which causes light-headedness; a racing heart; and other symptoms. With no cure or treatment, ME leaves many people confined to their homes; one study found that a quarter of people with ME are home-bound and, of those, about 15 percent are also bedridden.
In the two decades since her diagnosis, Madeline has not set foot on stage. Unable to work, she receives provincial government assistance for people with disabilities. But the money falls short of what she needs. Each year, she has fallen thousands of dollars further into debt.
Today, she is among the more than 1.4 million Canadians with disabilities who live in poverty. Many, like Madeline, receive some government support; despite that, 40 percent of Canadians with disabilities live below the poverty line. And people with disabilities often need more basic goods and services just to survive—things like mobility aids, home care, accessible housing and transportation, prescription drugs and health care services, not all of which are fully covered by Canada’s publicly funded health programs.
There is, however, one government-funded service available to some people living with disabilities: medical assistance in dying (MAID). Last year, the Canadian government voted to expand MAID laws to include people suffering with illness whose death is not imminent, like Madeline. This has put her in a quandary: She has government funding to die in comfort, but not enough to live at the same standard.
And so, when she runs out of money, which she expects will happen this summer, Madeline has the option to die.
Madeline, who is 54, lives in a 300-square-foot apartment in Vancouver. She asked Chatelaine to use a pseudonym, saying that she could not endure the stress of being publicly identified. Helaine Boyd, Madeline’s advocate from Disability Alliance BC, confirmed the details of her client’s story, noting that Madeline’s diagnoses include fibromyalgia and chemical sensitivities, in addition to ME.
Madeline lives with pain that radiates throughout her body. On a Zoom call, as she spoke to me while lying in bed, she let out a howl from strain when she readjusted her body. In an audio file she emailed to Chatelaine with answers to follow-up questions (an approach she prefers because she cannot easily text or type), she panted from exertion.
Madeline’s annual income is approximately $16,300, nearly $5,000 less than what a single adult living in Vancouver needs to stay above the poverty threshold. She receives $1,358 per month from the B.C. government assistance program for people with disabilities. This has been her only source of income for 20 years, other than donations through GoFundMe campaigns or informal support from friends. She spends $348 monthly on subsidized housing, leaving her with just over $1,000 per month to cover her expenses. Most of her money goes to food for her specialized diet, internet, toiletries that don’t contain harsh ingredients or scents, cleaning supplies and other health expenses. Most of her clothes are hand-me-downs or from second-hand stores, and she uses an old laptop gifted by a friend. Over the years, she has relied on a credit card to cover extra expenses, amassing $40,000 in debt.
In a budget she put together outlining the care she would like to access that is not covered by the government, Madeline estimates that, every month, she would require about $400 for massages, $760 for a psychologist, $680 for physiotherapy and $2,000 for customized intravenous vitamin therapy provided by a naturopath. Altogether, in an ideal world, she’d need $75,600 a year to cover these and other additional expenses.
But because of Madeline’s financial limitations, accessing all that care is nearly impossible. Canada’s patchwork of provincial health systems is built on a model of traditional medical care provided by physicians and nurses who work in hospitals and clinics. It is a system tailored to people who are sick with ailments that have therapies proven by research and practice. The Canada Health Act requires provinces and territories to cover “medically necessary” or “medically required” hospital, physician or surgical-dental services, but not more.
ME, which affects about 600,000 Canadians, does not neatly fit into that model. There’s no standard diagnostic test to confirm a person has it. Instead, ME is diagnosed based on criteria: A person must have been ill for at least six months and have symptoms such as fatigue or POTS. There’s no established treatment, in part because ME research has been underfunded for decades. As a result, many of the treatments Madeline seeks are experimental and have not been medically proven. ME patients—most of whom are women—were historically dismissed, their illnesses written off as psychological and even hysterical. Even now, few physicians in Canada specialize in caring for patients with this condition. Subsequently, people with ME report a high level of unmet health needs—higher than people with strokes, cancer or mental health disorders, according to 2014 data from Statistics Canada.
Madeline says she was often told by physicians that her issues were in her mind or there was nothing doctors could do. So she turned to complementary and alternative medicine for help. Madeline says alternative health providers, especially naturopaths, listened and showed a willingness to try unconventional treatments. Some naturopathic therapies, particularly the intravenous vitamin regimen she receives two or three times a week, have helped when nothing else did, she told Chatelaine. (There has been little research into the efficacy of these experimental treatments in aiding those with ME.)
Health care services such as physiotherapy, psychology, dental care and naturopathy are typically covered only by private insurance in most provinces, or patients pay out of pocket. In B.C., Madeline receives a supplemental benefit package that covers $23 per visit to approved providers, like physiotherapists and naturopaths, for up to 10 visits a year, but this doesn’t come close to the $250 she needs for each IV round.
Dealing with the red tape around disability services “feels like I’m trying to climb Everest in a T-shirt, barefoot, in my underpants,” Madeline says.
That gap in coverage means that these complementary health services are often inaccessible to people who do not have jobs with benefits or who are unable to work, says Lindsay Tedds, an associate professor of economics at the University of Calgary who lives with a disability. But, she says, these services play a valuable role in managing the side effects of debilitating illnesses.
Treatments that aren’t covered by the government “can put a real spring in your step for several weeks afterwards,” says Tedds. “You’re trying to do the little things to help you feel better over the short term, [but] none of that stuff is covered in our universal system.”
One of the hallmarks of ME is post-exertional malaise (PEM)—a full-body slam of exhaustion that hits hours or days after a physical or mental effort. The crash of PEM can send a person to bed for days. Madeline tries to ward off PEM by managing her energy expenditure carefully. It’s a balancing act made more difficult because of her poverty: Living without spending extra money demands physical and mental effort.
Madeline doesn’t have a car and can’t afford to take taxis to her medical appointments. She relies on public transit and HandyDart, B.C.’s accessible shared-transit service for people with disabilities. But HandyDart trips take longer than a taxi. She used to book the HandyDart to take her to appointments at a naturopathic clinic that offered compassionate rates, 24 kilometres from her apartment. The trip on the HandyDart minibus took three hours each way, she says. By the time she got home from the appointment, she felt more tired than if she’d never gone to therapy at all. Now she goes to a clinic that’s closer but more expensive, she says.
Madeline doesn’t have energy to cook, so she relies on pre-packaged microwaveable meals. She says she needs foods that are gluten-free for her gluten intolerance (the culprit behind the diarrhea that plagued her throughout her 20s) and low-salt to reduce the swelling in her limbs and torso. Prepackaged meals that meet her dietary specifications are more expensive than cooking from scratch. She can’t buy her meals in bulk, which would save money, because she lacks a freezer. She doesn’t have a dishwasher, either, and says she rarely has the energy to stand to clean dishes. Instead, she buys disposable plates and utensils. For a while, she kept a stack of protein bars by her bed to eat as meal replacements when she couldn’t get out of bed; now, she says, she can’t bear them anymore.
She admits that her apartment is a mess, and she blurs her background during Zoom calls so no one can see it. “People tell me that they’re not going to judge me for the mess—and then they totally judge me,” she says. “It’s hard because it looks like an episode of Hoarders, but it’s not about that. It’s about being too sick to purge things, to organize things, and about being too poor to get rid of certain things.” She feels like she’s been every size between 10 and 20, and attributes the weight fluctuations to edema. She can’t afford to buy new clothes when she loses or gains weight; instead, she keeps everything.
Among Madeline’s biggest stressors are the obstacles she must overcome to gain additional support from government agencies. When she tried to buy a back brace, an orthotist did not fill out the funding application properly. Her application got bumped to an appeal process, which meant filling out more papers and waiting longer for the brace. Dealing with the red tape around disability services “feels like I’m trying to climb Everest in a T-shirt, barefoot, in my underpants,” she says.
Madeline’s experience isn’t unique, says Michelle Hewitt, co-chair of Disability Without Poverty. The bureaucratic requirements for people with disabilities are designed to be difficult; a person has to prove that they are worthy of help, she says.
Hewitt says “entrenched ableism” is deeply baked into Canadian society. She argues that many Canadians devalue people who cannot work. At a press conference days after the 2018 election, Ontario Premier Doug Ford told a crowd, “The best way to help people out of poverty is something called a job.” But almost half of Canadians in poverty are disabled, counters Hewitt. “For a whole load of sick people in this country, it really doesn’t matter how much money you give them—they cannot work. But they do not deserve to live in poverty.”
In spring 2020, as COVID-19 made its first sweep around the globe, Canadians stayed home and businesses shuttered. Madeline couldn’t see her naturopath or physiotherapist. Her pain grew worse. She became even more isolated. But there was one glimmer of hope: After waiting months, she got an appointment to see an immunologist. She says she was told as a kid that she might have an immune deficiency, perhaps with a genetic cause. When a first round of tests on immune-based conditions came back clear, Madeline wondered if the immunologist could set up further testing that could provide answers about what was happening to her. But she says that the immunologist told her she was not eligible for such specific testing, and that genetic testing did not have a role in the treatment of ME. She felt her last hope was dashed. Her financial situation was rapidly worsening. “I’ve done everything I know how to do,” she says.
So she decided to apply for a medically assisted death. In the summer of 2020, Madeline says a doctor in Vancouver who performs MAID told her that she was not eligible. Her death was not reasonably foreseeable, a legal requirement at the time. But the law was set to change. When it did, Madeline could apply for an assisted death based on her quality of life. Madeline’s friends set up a GoFundMe campaign for her, trying to raise enough money to keep her alive as long as possible.
In March 2021, the Canadian government passed Bill C-7, which expanded assisted dying to people who were suffering with illness but not immediately near death. Soon after, Madeline was assessed and approved for MAID.
Many in the disability community have expressed frustration about the new criteria for MAID, saying that people may feel coerced into dying when they are suffering from poverty more than illness. Madeline, however, says she welcomed the changes to MAID. At the same time, she says that her decision to apply for an assisted death is largely driven by finances: “I’ve been forced to a measure of deterioration [where] I’ve ended up with MAID,” she says.
She isn’t alone. Hewitt of Disability Without Poverty told Chatelaine that she knows of eight people who are considering MAID because of poverty. This winter, a 51-year-old Ontario woman diagnosed with multiple chemical sensitivities chose MAID after she could not find affordable housing free of cigarette smoke and chemical cleaners. And another woman with the same condition told CTV that she will also seek a medically assisted death due to a lack of suitable housing. There are few known details about these cases, although they will be reviewed by the Office of the Chief Coroner of Ontario, in keeping with the rules for MAID requests in the province.
Liza Rogers, who helped organize Madeline’s GoFundMe, says the pair met at a house party 25 years ago. Since then, she has watched her friend’s health deteriorate as she slid into destitution. What happened to Madeline could happen to “anybody who doesn’t fit in the traditional job box and suddenly has a health issue that they have to pay for out of pocket,” she says.
The GoFundMe campaign raised more than $22,000 over the past year and a half, but it is not enough. Based on the current funds, Madeline feels she will run out of money in July if she goes for intravenous vitamin therapy twice a week.
She is not sure what will happen when and if she runs out of money. She equivocates on whether she will pursue MAID this summer, but she likes to know the option for a medically assisted death is there.
“It’s humiliating that I can’t take care of myself. I’m not comfortable talking to the media,” she says. “But I don’t want to be dead more than I’m uncomfortable doing this.”
Advocates for people with disabilities are warning that the world could see a surge in the number of people who are disabled and unable to work due to long-term consequences from COVID-19. To date, there have been 3.9 million cases of COVID in Canada, according to official figures, but these underreport the actual number of cases. It’s unclear how many people will go on to develop debilitating long COVID. In 2021, the World Health Organization reported that, according to small-sample studies, 10 to 30 percent of people infected with the virus could develop lingering symptoms. In May, Theresa Tam, Canada’s chief public health officer, said that figure could be as high as 50 percent, based on more recent research. Not everyone with long COVID will be driven from the workforce, but some will. This makes long COVID among the latest in a list of disabling post-viral conditions.
Hewitt argues that Canada can—and must—do a better job of supporting people who are sick or have disabilities. “We are an affluent country,” she says. “We can still afford to take care of all the disabled people in this country who live in poverty.”
Chatelaine sent requests for comment to the B.C. ministries of Health and of Social Development and Poverty Reduction, but did not receive responses.
In a statement, a spokesperson for federal Minister of Health Jean-Yves Duclos said he could not comment on specific cases but “understands that it is not an easy decision for those involved in the process.” The federal government recognized that expanding MAID to people whose death is not imminent “would result in greater complexity of cases” and, as such, it introduced safeguards to protect people who are not near the end of life. These include having two practitioners assess the patient’s eligibility, and a 90-day minimum time frame to consider a request for someone who is not at imminent risk of dying. This allows a long window for consultations with health-care providers who have expertise in the patient’s condition and consideration of the totality of their circumstances.
Jurisdictions in Canada provide a broad range of support for people with disabilities, the statement continued. “We recognize, however, that there are disparities in access to services and supports across the country, and governments are working hard to address those disparities.”
In June, the Trudeau government introduced legislation to create a Canada Disability Benefit, a monthly payment for working-age Canadians with disabilities. It’s unclear exactly what the benefit will look like—questions remain about who will be eligible and how much support the benefit will provide. Minister of Employment, Workforce Development and Disability Inclusion Carla Qualtrough has said the bill was designed to lift recipients to an income level similar to that provided by the Guaranteed Income Supplement—about $19,000 in benefits per year. Brent Page, a director with After Stroke in conjunction with March of Dimes, said in a public briefing that if the benefit becomes a reality, it could be “a once-in-a- generation opportunity [to end] disability poverty in Canada.”
But a Canadian disability benefit is still just an idea. What’s needed is something grander—a sea change in attitudes toward people with disabilities and a new social contract that grants people with disabilities the right to the resources they need to thrive, says Jeff Preston, an assistant professor of disability studies at King’s University College at Western University who was born with a rare neuromuscular myopathy.
He references an analogy to explain the scope of change needed: Imagine you’re standing by a river and you see someone drowning. You dive in to pull them out. Then you notice someone else coming down the river, drowning. And someone else behind them. “You’re like, man, we need more people down here so that we can start to pull them out,” says Preston. But that’s not solving the problem. To stop people from drowning, we should ask: Why are all these people drowning?
That’s where Canada is when it comes to people with disabilities, he says. We are standing at the side of the river, rescuing people one at a time. “There are so many things that are preventable that we are simply allowing to happen,” he says.
Helaine Boyd, Madeline’s advocate at Disability Alliance BC, says she has met with representatives at the B.C. Ministry of Health to discuss Madeline’s situation and is waiting for an update. The #MEAction network has also petitioned B.C. Minister of Health Adrian Dix to request a stopgap measure for Madeline that would provide immediate financial support. They asked him to call on Health Canada to allocate more research money for post-viral syndromes.
“We haven’t heard anything at this point,” says Boyd. She would like Health Canada to adopt a twin-track approach to funding and approving treatments. The first track is the current system: a large-scale approval process for therapies that are rolled out to the general population. But the second would be decided on a case-by-case basis with more flexibility. It would be designed for “people who really need [help].”
Madeline wonders if people who read her story will view her requests for naturopathic treatments as a plea to live in luxury. “To a healthy person, they might be optional or they might be a luxury, but to a person like myself, they are not,” she says.
She wants readers to know that she volunteers in her community. She says this work is one of the reasons she struggles with the possibility of a medically assisted death. But she is angry that she has to keep asking for help: “I’m not [giving up]. That’s not what MAID is. MAID is brutal practicality.”
Madeline started dreaming lately that a hit man is looking for her. She doesn’t know how long she can hold out, both in her dream and in real life. “It’s hanging off a cliff by a branch and not knowing when your muscles [will] give out. How long is this branch going to hold me?”