A 31-year-old woman from Toronto who uses a wheelchair is close to the final approval of an application for death with the help of medical care after an unsuccessful offer to secure an affordable apartment that does not aggravate her chronic diseases.
The looming approval of death surprisingly makes her grateful. “Relieved and excited,” Denise said in an interview with CTV News. “I was afraid they wouldn’t say yes,” she said.
Denise asked us not to use her real name to protect her identity.
She was diagnosed with Multiple Chemical Sensitivity (MCS), which causes rashes, difficulty breathing and blinding headaches, called hemiplegic migraines, which cause temporary paralysis.
The chemicals that make her sick, Denise said, are cigarette smoke, laundry chemicals and air fresheners. She is at risk of anaphylactic shock, as is EpiPens at any time if she has a life-threatening allergic attack.
Denise was also confined to a wheelchair after a spinal cord injury 6 years ago and has other chronic illnesses.
“APPLICATIONS FOR A REASON IN ESSENCE … BECAUSE OF PREVIOUS POVERTY”
She desperately wants to move to a wheelchair-accessible apartment with cleaner air. But her only income comes from the Ontario Disability Assistance Program (ODSP). She receives a total of $ 1,169 a month plus $ 50 for a special diet. “I applied for MAiD essentially … because of the terrible poverty,” she said.
One of her doctors, Dr. Rihanna Bray, medical director of the environmental health clinic at Toronto Women’s Hospital, is looking for better housing, saying Denise called for “immediate relocation for her safety.”
But Denise said she and supporters have called 10 different agencies in Toronto in the past six months to find homes with reduced exposure to chemicals and smoke that she can afford at ODSP.
“None of them were able to do anything meaningful in terms of my relocation, receiving discretionary emergencies or temporary housing and emergency funds,” Denise said.
Applying for death with medical help was surprisingly easier. Denise said she started working on MAiD applications in the summer of 2021.
A psychiatrist, she said, first considered her competent to make the decision. A second MAiD provider reviewed her medical history and signed the approval, according to Denise. Another doctor, who offers medical death, has now asked her to finalize documents, including power of attorney and funeral arrangements, along with a DNR (Do Not Resuscitate) order. She said she was finalizing that documentation.
Denise also asked doctors to waive the 90-day waiting period for people like her who are “second song” cases, meaning their natural death is not inevitable, hoping for an earlier death.
Dr Bray said none of the doctors had contacted her to learn about efforts to help Denise find a home first. This is despite research showing that people with multiple chemical sensitivities often improve in chemically cleaner environments.
“Shocking,” she said. “These are easily remedied situations,” Dr. Bray said.
Denise confirmed that when friends and supporters can raise money for her to stay in a wheelchair-accessible hotel near a fresh-air gorge, her symptoms are greatly reduced.
“The stay is paid with donations and is limited in duration by the available funds. This is an urgent “solution” and absolutely unsustainable, “Denise wrote in an email.
Denise says her life today is far from her first days as a professional make-up artist.
“I was making $ 25 an hour. It was a good job, “she told CTV News. But the chemical exposures from her work have caused her multiple chemical sensitivities (MCS). MCS is a recognized disability under Canadian human rights law. It is thought to be caused by exposure to chemicals or other environmental exposures that cause physical symptoms, although this is a controversial diagnosis in the medical community.
Her story is alarmingly similar to the one reported by CTV earlier in April. Sofia also suffered from multiple sensitivities to chemicals. She received medical treatment in February after unsuccessful attempts to remove an apartment from smoke and chemicals in her building. Denise said she began filing her application for MAiD in the summer of 2021, long before Sofia’s history became public.
“THIS IS THE TOP OF THE ICEBERG”
Her difficult choice underscores that Sofia’s decision was not a one-off.
Among those trying to help her is David Fancy, a professor of dramatic arts at Brock University and an advocate for the rights of people with disabilities. He heard about her plight last fall and testified to how hard Denise has tried to find a healthier home. But he saw her lose hope.
“Door after closed door after closed door … the glove tends to push people in the direction of legislation that’s out there, which is medical care and dying,” said Fancy, who launched GoFundMe to try to help Denise find better accommodation. “I have a very serious concern that this is the tip of the iceberg,” he added.
“It’s devastating,” said Devorah Kobluk, a senior political analyst at the Center for Income Security Advocacy in Toronto, part of Legal Aid Ontario. She says many people with disabilities live far below the poverty line, which gives them few opportunities.
“There is an extraordinary cost to living with a disability that is unique to them and their disability. Wheelchairs are expensive, therapy … all of these things cost extra,” Kobluk said.
The bigger question about the purpose of medical care in Canada is also coming into play, say defenders of the rights of people with disabilities. Originally approved by the Senate as a way to alleviate the suffering of those close to death, it was extended in March 2021 to those with chronic illnesses and disabilities.
“We have now moved on to the basic solution to the shortcomings of our social security network through this appalling back door, not that anyone meant it that way, but it has become that,” said David Lepofsky, a defender of people with disabilities. Visiting Professor of the Rights of Persons with Disabilities at Osgoode Hall Law School.
“With the right support, I have no doubt that people with disabilities can live well in society. We all want people with disabilities to know that their lives have value,” Kobluk said.
CTV News contacted the Ontario Department of Children, Community and Social Services, which confirmed the monthly payments to people with disabilities who live alone.
Both Denise and Sofia were evaluated at the environmental clinic at the Women’s Hospital, which tries to help people with sensitivity to chemicals. Dr Bray says the clinic has a growing number of recommendations for the condition, with a two-year waiting list for a specialist. Canadian statistics show that at least 700,000 Canadians suffer from sensitivity to chemicals.
“Society is failing these patients,” she said. “I hope we can just stop this very easily that MAiD provides and start recognizing that these people need to be, they need to be helped,” Dr. Bray said.
Edited by executive producer Mary Nersesyan
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