FERGUS – A disabled Fergus woman’s quality of life living on Ontario Disability Support Program (ODSP) payments has diminished to the point where she’s in the process of getting approval for medical assistance in dying (MAID).
Jacqueline Holyoak doesn’t think it should be this way and if ODSP provided more to empower her and others to take care of themselves, it’s likely she wouldn’t be so eager to start that process.
Holyoak, 59, has lived in Fergus for 12 years and lives with serious fibromyalgia, a disorder that can include widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues.
Diagnosed at 31, she said these days she can’t walk more than 20 feet at a time due to pain which she’s noticed has gotten much worse over the last few months.
She lives alone and has little in the way of family support.
Holyoak recently took her frustrations to social media.
For the longest time she continued to work as a medical assistant before it became too difficult about 12 years ago. Later on her ex-husband stopped paying spousal support leaving her with no option other than going on ODSP around the time COVID lockdowns began.
“At that point, I was 172 pounds and today I’m 107 pounds,” Holyoak said in an interview at her apartment. “I’ve lost that much weight not because I’ve been dieting, I can’t afford to eat.”
Holyoak gets $1,228 per month from ODSP, most of which is eaten up by rent at a county-owned apartment which costs $756 for the month.
By the time other bills and minimal pharmaceuticals are paid for, Holyoak finds herself left with $60 on average a week to live off of.
“I pretty much live off milk, cereal and hamburgers,” Holyoak said, adding she’s trained her body to live off one meal per day.
With such a tight budget there’s not a lot of room for surprises like an upcoming rent increase in March. Her coffee machine stopped working recently. She can't replace it, she just has to live without one.
Buying a shower stall seat meant having to forgo food as she had to save up and buy it herself.
Holyoak loves soccer and music but has lost just about every hobby she’s had because there’s just no room in the budget for it.
Once FIFA World Cup soccer is over, she doesn’t see much else going for her at this time.
“Since I’ve been on ODSP, everything’s been taken away from me,” Holyoak said.
Holyoak said she’s heard or considered just about every solution to her issues, including getting ODSP to pay for some expenses or to have someone else move in to share resources and to act as a caregiver.
She explained having someone else move in would reduce what she’s given by ODSP and recent difficulties with travelling to appointments has left her without a doctor, which leaves her without the ability to get a note.
Dealing with ODSP on the phone is also an exhausting task for people with disabilities due to the stress, according to Holyoak
“Every tiny thing you need makes six phone calls, a week of work, forgetting to call you back to the point where I don’t even finish what I’ve started because it’s too much work,” Holyoak said.
“They put you through so many hoops and you don’t get it in the end anyway that I’ve just given up.”
Holyoak acknowledges there’s a lot of good people who live in Wellington County and resources available for those struggling with poverty like the local food bank.
At times, she said she’s found herself with no other option but to accept donations or handouts but doesn’t like to do so and feels it shouldn’t be up to charity to fill in what ODSP doesn't provide.
She’s called on the province to make ODSP provide a livable income for her and others she knows are in this situation to empower them to take care of themselves.
She’s even extended an invitation to Premier Doug Ford to sit down and talk with her to see the reality of the situation people on ODSP live with.
“I want to sit down and I want to look him in the eye and I want him to answer me, ‘because I’m disabled, why am I worth $1,228 and why do you expect me to have other people take care of me rather than you?” Holyoak said, acknowledging the chances of sitting down with Ford being slim.
The issue with ODSP is not the reason Holyoak is exploring options with MAID, but it isn’t helping.
She said her fibromyalgia pain has been getting much worse over the past few months. She had her first assessment about four months ago and met about 80 per cent of the criteria for it and will be reassessed soon due to recent flare ups.
“I am not choosing MAID because of ODSP, I am choosing MAID because of the pain,” Holyoak said.
“Having said that, if I had a quality of life over here, would I be so eager to choose MAID? Absolutely not, it’s because ODSP makes my life such a grind, at the end of the day I’m exhausted and I’ve had no quality of life or done anything.”
