This woman is considering medical assistance in dying, due to a disability. But poverty is also a factor
Jacquie Holyoak has debilitating fibromyalgia, struggles to live on disability benefits
Jacquie Holyoak is considering accessing medical assistance in dying (MAID) due to the debilitating pain of living with fibromyalgia. But she says it's a choice she might not even contemplate if her disability benefits didn't leave her struggling to make ends meet.
"I'm just really exhausted ... I need someone to help me, and I've been asking everywhere. And unless you have money, you're just not going to get the help," said Holyoak, who lives in Fergus, Ont.
The former medical assistant is on the Ontario Disability Support Program [ODSP], but says it's not enough to live off.
"If I wasn't on ODSP, would I be seeking MAID? I don't know that answer, but I'm leaning towards no, because my quality of life would be so much better," she told The Current's Matt Galloway.
Holyoak, 59, was diagnosed with fibromyalgia about 30 years ago. The long-term disorder is not fatal, but is characterized by pain all over the body, sleep problems, fatigue and brain fog. The pain can be "quite relentless," she said, meaning she doesn't "get to have a normal life."
I'm just sitting here wanting to live, but not knowing how. And seeking help to die, but not knowing if I'm even going to be eligible- Jacquie Holyoak
About two years ago she reached the point where she could no longer work, and now receives $1,228 a month from ODSP. After rent, she's left with about $80 a week to cover groceries, pharmacy bills and other expenses. She also has to pay for things like shower chairs and walking aids to help her cope with her condition.
"I pretty much live on cereal in the morning and a hamburger in the evening and then if I'm lucky, graze on fruit here and there," she said.
Holyoak said she's lost 70 lb. in two years, and her mobility is now so restricted she can't make it to the nearby grocery store, even though she can see it from her window. While she gets some help from the people in her life, she can't rely on that 24/7. She thinks Canadians with disabilities eventually "fall through the cracks, and are left to our own devices."
Canada legalized MAID in 2016, offering it to Canadians suffering grievous and irremediable conditions, provided they have the capacity to understand the choice, as well as their own health issues, and any potential treatment or palliative care options.
Last year, the federal government passed Bill C-7, which expanded access to MAID to include those whose deaths are not "reasonably foreseeable," after a 2019 court challenge by two Quebecers. The inclusion of those suffering solely from mental illnesses was due to begin next March, but the federal government is now seeking a delay.
Poverty or a lack of support is not a basis to receive MAID, but some disability advocates have said expanding access, without providing adequate supports to live full lives, is tantamount to discrimination against people living with disabilities.
Holyoak was first assessed for MAID six months ago — solely on her fibromyalgia — but fell short of the requirements. Her condition has since worsened, and she's waiting to see if she now qualifies.
"I'm just sitting here wanting to live, but not knowing how. And seeking help to die, but not knowing if I'm even going to be eligible for that. So I'm very overwhelmed,' she said.
Despite everything, she does "flop back and forth" on the decision to access MAID.
"I have children. I have a new grandchild. Do I want to actually die? Of course not," she said.
"I love music and soccer and [have] things I want to do. But my quality of life doesn't allow me to do those things."
Sending a message that 'death is an option'
"People with disabilities disproportionately struggle with poverty," said Trudo Lemmens, professor of health law and policy at the University of Toronto.
"It's towards those people that the state is now sending the message that death is an option for them," he told The Current.
In an emailed statement to The Current, Minister of Employment, Workforce Development and Disability Inclusion Carla Qualtrough said she was "very concerned that decisions to pursue MAID are being driven by socio-economic circumstances."
She said anyone applying for MAID must be informed of available social services and disability supports, but acknowledged that "persons with disabilities in Canada face significant barriers in accessing the supports and services they need to live in dignity, safety and security."
Qualtrough pointed to the federal government's efforts to remove those barriers, including the Canada Disability Benefit, and the "Disability Inclusion Action Plan, which focuses on financial security, employment, accessible communities, and disability-inclusive government."
The Canada Disability Benefit, Bill C-22, would create a monthly benefit payment for working-age Canadians with disabilities. It was reintroduced in June by the Liberal government after a previous version of the proposal, bill C-35, died when the 2021 federal election was called in Aug. 2021. According to parliamentary records, Bill C-22 has not yet reached third reading.
"We were pushing for its passage within this year … that's certainly not going to happen," said Rabia Khedr, national director of disability rights group Disability Without Poverty.
Bill C-22 does not stipulate the monetary value of the benefit, but Qualtrough has previously said it has been designed to match the Guaranteed Income Supplement, which ensures someone receiving the benefit gets around $19,000 in benefits a year.
Khedr hopes "it can eventually become law in early 2023 … so that people with disabilities actually get the benefit."
She wants Canadians to think about what society is offering people with disabilities.
"What are we giving them? The option to line up at a food bank? The option to choose medical assistance in dying?" she asked.
"We need to give them the resources they need to live with dignity. And that begins with the Canada Disability Benefit. That begins with some remnants of financial security."
With files from CBC Politics. Audio produced by Idella Sturino and Shyloe Fagan.
