A 31-year-old Toronto woman who uses a wheelchair is set to get final approval for a request for medical assistance in dying after a failed bid to get an affordable apartment that doesn’t aggravate her chronic conditions .
The imminent approval of death makes her surprisingly grateful. “Relieved and thrilled,” 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 sensitivities (MCS), which trigger skin rashes, difficulty breathing and blinding headaches called hemiplegic migraines that cause her 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 in case she has a life-threatening allergic attack.
Denise is also in a wheelchair after a spinal cord injury 6 years ago and suffers from other chronic illnesses.
“APPLIED A FEMALE DEMAND ESSENTIALLY… DUE TO ABJECT POVERTY”
She desperately wants to move to a wheelchair-accessible apartment where the air is cleaner. But his only income comes from the Ontario Disability Support Program (ODSP). She receives a total of $1,169 per month plus $50 for a special diet. “I applied for MAID basically…because of abject poverty,” she said.
One of her doctors, Dr Riina Bray, medical director of the Environmental Health Clinic at Women’s College Hospital in Toronto, is looking for better accommodation, saying Denise needs an “immediate move for her safety”.
But Denise said she and her supporters have called 10 different agencies in Toronto over the past 6 months to find housing with reduced exposure to chemicals and smoke that she can afford on ODSP.
“None of them could do anything meaningful to get me moved, to get the discretionary emergency, or temporary housing and emergency funds,” Denise said.
Applying for medical assistance in dying has been surprisingly easier. Denise said she began working on MA applications in the summer of 2021.
A psychiatrist, she says, initially deemed her competent to make the decision. A second MAID provider reviewed her medical history and signed the endorsement according to Denise. Another doctor who offers medical assistance in dying has now asked him to finalize documents, including a power of attorney and funeral arrangements, as well as a DNR (Do Not Resuscitate) order. She said she was finishing this documentation.
Denise also asked doctors to waive the 90-day waiting period for people like her who are “Track Two” cases, meaning their natural death is not imminent, in hopes of earlier death.
Dr Bray said none of the doctors contacted her to inquire about efforts to help Denise find accommodation first. This is despite research showing that people with multiple chemical sensitivities often do better in chemically cleaner environments.
“Shocking,” she said. “These are easily fixable situations,” Dr. Bray said.
Denise has confirmed that when friends and supporters can fundraise for her to stay in a wheelchair accessible hotel near a ravine with clean air, her symptoms decrease significantly.
“Stays are paid for with donations and are limited in duration by available funds. This is an emergency ‘solution’ and absolutely not sustainable,” Denise wrote in an email.
Denise says her life today is a far cry from her early days as a professional makeup artist.
“I was making $25 an hour. It was a good job,” she told CTV News. But the chemical exposures from his work triggered his multiple chemical sensitivities (MCS). MCS is a recognized disability under the Canadian Human Rights Act. It is thought to be caused by exposures to chemicals or other environmental exposures that cause physical symptoms, although it is a controversial diagnosis in the medical community.
Her story is eerily similar to one reported by CTV earlier in April. Sophia also suffered from multiple chemical sensitivities. She was given a medically assisted death in February, after failed attempts to clear an apartment of smoke and chemicals in her building. Denise said she started paperwork on her MAID application in the summer of 2021, long before Sophia’s story became public.
“THIS IS THE TIP OF THE ICEBERG”
Her difficult choice underscores that Sophia’s decision was not unique.
Among those trying to help her is David Fancy, a Brock University drama professor and disability rights advocate. He heard about her plight last fall and attests to how hard Denise tried to have a healthier home. But he saw her lose hope.
“Door after camera after camera…the gauntlet tends to push people towards the legislation which is there, which is medical assistance and death,” said Fancy, who started a GoFundMe to try to help Denise find better accommodations. “I’m afraid this is just the tip of the iceberg,” he added.
“Devastating,” said Devorah Kobluk, senior policy analyst at the Income Security Advocacy Center in Toronto, part of Legal Aid Ontario. She says many people with disabilities live well below the poverty line, leaving them with few options.
“There’s an extraordinary cost of living with a disability that’s unique to them and their disability. Wheelchairs are expensive, therapy…all of those things cost more,” Kobluk said.
The broader question of the purpose of medical assistance in dying in Canada also comes into play, disability rights advocates say. Initially approved by the Senate as a means of alleviating the suffering of people close to death, it was extended in March 2021 to people with chronic illnesses and disabilities.
“We have now started to fix the gaps in our social safety net with this horrible backdoor, not that anyone meant it that way, but that is what it has become,” David said. Lepofsky, disability rights advocate and visiting professor of disability rights. at Osgoode Hall Law School.
“With the right support, I believe 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 has contacted the Ontario Ministry of Children, Community and Social Services, which has confirmed monthly payments to people with disabilities who live alone.
Denise and Sophia were assessed at the Environmental Health Clinic at Women’s College Hospital, which tries to help those with chemical sensitivities. Dr Bray says the clinic is seeing an increasing number of referrals for the condition, with a two-year waiting list for a specialist appointment. Canadian statistics suggest that at least 700,000 Canadians suffer from chemical sensitivities.
“Society is failing these patients,” she said. “I hope we can just put an end to this very simple solution that MAID provides and start recognizing that these people need help,” Dr. Bray said.
Edited by Executive Producer Mary Nersessian