How poverty, not pain, is driving Canadians with disabilities to consider medically-assisted death – National

“Hello, you’ve reached the provincial health services authority telephone line for medical assistance in dying…”

This is the automated recording Joannie Cowie got when she called the government to see if she would be eligible for medical assistance in dying, commonly known as MAiD.

It’s an unmistakable message from the government: if you want to end your life, we’ll help you.

“If you call the number on the government website, they will provide doctors that will sign off for you,” says the 52-year-old resident of Windsor, Ont.

“They can have me dead in 90 days. That’s what I was told.”

Cowie certainly meets the medical criteria.

“I have severe, severe asthma. And that’s turned into COPD, and Guillain-Barré syndrome as well as cancer. And I also just recently fractured my back,” she says.

“I’m tired a lot. The pain is excruciating.”

Joannie Cowie at home in Windsor, Ont.

Global News / Brent Rose

Enacted in 2016, Canada’s first MAiD legislation required that death be “reasonably foreseeable.” However, based on subsequent legal challenges, the legislation was ruled unconstitutional and the rules were changed. Starting last year, anyone who has a “serious and incurable illness, disease or disability” that is irreversible with “enduring and intolerable” suffering became eligible.

But critics say the government’s quick expansion of MAiD and insistence that it’s the compassionate thing to do misses an important factor. A massive number of Canadians with disabilities like Cowie are trapped in an excruciating cycle of poverty.

“I get angry at people who say you need to budget better because I just want to say to them, go to hell,” she says.

Cowie developed epilepsy when she was six years old, but still managed to pursue education and work — for a time.

“I have my criminology degree. I also have a couple of college degrees, and I taught at a local college here,” she says.

But as her disabilities and pain piled up over the years, her employment options narrowed. That is also a common experience. According to Statistics Canada, only 31 per cent of people who are severely disabled are employed.

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Today, Cowie is unable to work, and has no family support. She lives with her daughter, a university student who is also disabled. Together, they must find a way to scrape by on $1,228 from Ontario’s disability support program, and a few hundred more for her daughter. It isn’t nearly enough, and going without is especially hard during Thanksgiving, as Canadians sit down to enjoy a holiday meal.

“All I want is a Butterball turkey, you know … make my own Butterball turkey that I used to make. And I can’t do that anymore,” Cowie told Global News.

“We have about $59 left to buy groceries in a month because our home, we have to have housing insurance. Rent. Hydro is high. Gas is high,” she says. “We just put it together and pay the bills and hope that we can make it every month.”

Dr. Naheed Dosani says that kind of poverty and stress is making people sicker, and driving a lot of Canadians with disabilities to consider ending their lives.

Dr. Naheed Dosani is a palliative care physician in Toronto.

Brent Rose / Global News

“We’re hearing about people who are choosing medical assistance in dying or thinking about it more because they don’t have money to live.”

Dr. Dosani is a palliative care physician and professor of community and family medicine at the University of Toronto.

“People are living in abject poverty when they’re on social assistance, in almost every province and territory across Canada.”

The numbers are grim. Looking across the country, provincial disability support rates vary from a low of $705 per month in New Brunswick, to a high of $1,685 in Alberta. Try getting by on $1,228 per month in Toronto, or $1,358 in Vancouver, where the average rent on a one-bedroom apartment is about $2,500.

The result is that according to a 2017 report from Statistics Canada, nearly a quarter of disabled people are living in poverty. That’s roughly 1.5 million people, or a city about the population of Montreal.

“When people are living in such a situation where they’re structurally placed in poverty, is medical assistance in dying really a choice or is it coercion? That’s the question we need to ask ourselves,” Dr. Dosani says.

Defenders of Canada’s assisted dying regime insist there are robust safeguards: applications have to be approved by two doctors, the process takes at least 90 days, and those who cite inadequate financial and social supports are not supposed to be approved. But there are at least a few cases that show those guidelines may not always be followed.

In February, a 51-year-old Ontario woman who called herself “Sophia” chose to die, reportedly because she suffered severe chemical sensitivities and wasn’t able to find affordable housing that didn’t worsen her condition.

Trudo Lemmens, a professor of health law and policy at the University of Toronto, says that whatever the intent behind Canada’s laws, the government has ignored the experiences of other countries and created a system rife with problems.

Trudo Lemmens, professor of health law and policy, University of Toronto.

Brent Rose / Global News

“In my view, we’re actually failing to implement even some of the most basic safeguards that actually exist in those countries.”

Lemmens cities the Netherlands and Belgium, the first countries in the world to legalize doctor-assisted death. It became legal in those countries in 2002. But he says there are important differences between their systems and Canada’s.

“You combine how in Belgium and the Netherlands people don’t put medical assistance in dying on the table. And doctors have to basically explore with the patient other options.”

He says those missing safeguards, and no review system for difficult cases, make Canada’s laws the most permissive in the world.

“In the context of medical assistance in dying, we’re getting rid of this idea that we will first try the least interventionist measures. There is no jurisdiction in the world other than Canada that frames this as just a medical intervention. It means a life-ending action.”

Ironically, what started as a compassionate argument to allow chronically ill and disabled people the right to control their own bodies has turned into accusations of discrimination.

“We’re basically sending the message that persons with disabilities who are not dying have an understandable reason to end their life. And this is discriminatory,” Lemmens says.

“Persons with disabilities and many disability advocates will say, ‘Well, don’t give us that compassion. Give us simply the support to live. Allow us or help us promote our inclusion in society in a way that we feel valued.’”

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The world has noticed. In August, the Associated Press extensively chronicled the case of Alan Nichols, a B.C. man who was admitted to hospital as a result of a mental health check, and was granted a doctor-assisted death in hospital only weeks later, over the objections of his family. His brother, Gary, insists Alan didn’t meet the medical criteria for MAiD. Alan’s family members have been unable to get an explanation that satisfied them, and maintain Nichols should still be alive.

Also in August, Global News reported that a veteran seeking help for PTSD and a traumatic brain injury was casually offered MAiD by a Veterans Affairs employee.

These cases follow multiple concerns raised by the UN Special Rapporteur on the rights of persons with disabilities. In 2019, she reported that during a visit to Canada, seniors told her they were offered a choice “between a nursing home and medical assistance in dying.”

And in 2021, in a letter to the federal government, the Special Rapporteur expressed “grave concerns” that Canada’s expanded eligibility criteria would violate “Canada’s international obligations to respect, protect and fulfil the core rights of equality and non-discrimination of persons with disabilities.”

Lemmens says he’s been warning the Canadian government for years it needed to slow down. An annual report on MAiD released in July showed that 10,064 Canadians opted for an assisted death in 2021, a 32 per cent increase over 2020.

“I am certainly concerned that Canada has, in a very short period of time, bypassed the numbers In jurisdictions like Belgium and Netherlands.”

The numbers don’t show how many people who opted for a medically assisted death were living in poverty, but Dr. Dosani says it’s not acceptable for anyone to choose to die for lack of financial and social support.

“I hear arguments: ‘Well, this is not impacting that many people.’ But you know what? If it affects one person, that’s way too many people. We need to do something about that.”

Lemmens says the rapid expansion of eligibility criteria for MAiD, particularly during the pandemic, sent the wrong message to the disabled community.

“To say that we, that persons with disabilities, urgently need a life-ending procedure in that kind of period, I think, was disturbing, was really insensitive and reckless.”

For Luca “LazyLegz” Patuelli, the treatment of people with disabilities during the pandemic, when compared to the able-bodied, was a wake-up call — especially when CERB cheques were being issued en masse.

“If the standard of living is $2,000 a month, according to the prime minister, then why are people with disabilities collecting cheques for a thousand dollars a month?”

Disability without Poverty co-chair Luca Patuelli (left) rehearsing before a theatre performance in Montreal.

David de la Harpe / Global News

Patuelli serves as national co-chair of the advocacy group Disability Without Poverty. The plight of disabled Canadians, particularly during the pandemic, encouraged him to raise his voice.

“The reality is that it was a big slap in the face for the disabled community when many disabled Canadians were not eligible for the CERB.”

Patuelli is best known as the headlining dancer at the 2010 Paralympic opening ceremonies in Vancouver. Despite a neuromuscular condition that affects his legs, he has found success as a choreographer, hip hop dancer and motivational speaker.

“I think that as a society, we should encourage individuals of all abilities of the possibility to discover their true potential. And the biggest thing that we can do is lift people up,” he says.

Patuelli credits much of his success to the financial and moral support of a close family. He knows many Canadians with disabilities don’t have that. He also knows what he has could be taken away.

“The reality is that at any point in anyone’s life, something can happen where disability becomes part of your life.”

That’s exactly what happened to Les Landry.

Les Landry at home in Medicine Hat, Alta.

Geordin Zee for Global News

“I was doing good. Making good money, $80, 85,000 a year.”

Just over a decade ago, Landry was working as a truck driver. Then, disaster struck.

“I developed a hernia. And that’s when the surgery happened. That’s when the blood pressure went out of control. That’s when I developed epilepsy, and three mini strokes, and things just fell apart.”

Today, the Medicine Hat, Alta., man is in a wheelchair and has severe chronic pain. But that’s not why he’s planning to apply for MAiD.

“The numbers I crunch … I will not make it. Like in my case, the problem is not really the disability, it is the poverty. It’s the quality of life,” he says.

Landry got by for years — just barely — on disability payments of $1,685 and timely donations solicited on Twitter. He also received a few extra benefits available under Alberta’s disability program — only a few hundred dollars extra, but it allowed him to budget and get ahead on his bills.

Then, he turned 65, and through a bureaucratic loophole, actually lost benefits.

“What I lost is the disability benefits — service dog allowance, special diet allowance, transportation allowance,” he says. “I am no longer a person with a disability. I’m a senior citizen in poverty.”

He worries that with the loss of income and rising prices, he may soon be homeless. He’s making plans to end his life before that happens.

“I am not against MAiD. What I am against is the expansion of MAiD without the improvement of benefits or quality of life. I mean, it’s lopsided,” he says.

“How do you target a segment of society with basically death as their only option to get out of their situation? And you don’t do anything by helping them out of that situation. I mean, how do you explain that?”

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There may be hope on the horizon for some. The federal government has tabled Bill C-22 for the second time. The legislation calls for the creation of a federal disability benefit. It expired the first time last year when the federal election was called. But we already know, it won’t cover seniors like Landry.

“That excludes me and anybody in my situation. There’s going to be a lot of people that are not going to be qualified for this Canadian disability benefit — myself and anybody like me that’s over 65.”

With 20 per cent of Canadian workers set to retire in the next decade, that could be a major problem.

“We are seeing a weakening social safety net for people who are aging in this country and particularly for people with disabilities. And that really worries me,” Dr. Dosani says.

“I suspect we’re going to continue to see many more aging Canadians, particularly people with disabilities, falling through the cracks.”

Joannie Cowie has heard the promises of more help before.

“People with disabilities have been put on the backburner and nobody gives a damn about them,” she says.

“I’ve cried a lot at night. I usually stay up a lot of the night. I pray. I pray a lot.”

She talks with a lot of people in the same position on social media. She says they’re just trying to hold on, but running out of hope.

“Almost everyone is like, yeah, it’s just kind of waiting to see. We’d like to make it to a year, but I don’t think we’re going to make it to a year.”

Les Landry says if something doesn’t change, he sees no way out.

“I don’t want to die. I don’t want to die. I just can’t see me living like this for the rest of my life.”

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