This woman is considering medical assistance in dying, due to a disability. But poverty is also a factor

Jacquie Holyoak

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.

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.”

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.”

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.”