TORONTO -- “They were willing to help me kill myself without helping me to live.”
“I’m so shackled that I don’t see any purpose to stay alive.”
These are just some of the words Jonathan Marchand and Lisa D’Amico want to say to the next prime minister of Canada. Marchand has had a form of muscular dystrophy since he was 15. He is now in his 40s and on a ventilator. D’Amico was born with cerebral palsy and has lived with it for more than half a century.
Both are asking whoever gets elected on Oct. 21 to appeal a recent landmark Quebec Superior Court ruling that broadens the scope in which medically assisted death is allowed, and to put resources into deinstitutionalizing people with disabilities, so they can be contributing, independent members of society.
The Quebec decision, published on Sept 11, invalidates portions of the existing law on medically assisted death, but has been suspended for six months to give the government time to revise the law. The two plaintiffs who brought the case to court, Jean Truchon and Nicole Gladu, were exempt from the delay. Truchon and Gladu have incurable, but not immediately life-threatening, degenerative illnesses.
Neither Marchand nor D’Amico want to die, but both say the lack of government support leaves people in their situation with no real choices, and push some into so much distress that euthanasia is a welcome option.
From 2016 to the end of 2018, there were close to 7,000 medically assisted deaths in Canada, said Dr. Paul Saba, with the Coalition of Physicians for Social Justice. Saba noted that many patients are often depressed when they have an illness.
He pointed to a recent case in British Columbia, where a man with a history of depression was granted a medically assisted death. His family argued he was incapable of giving informed consent.
“We’ve emphasized more and more … assisted dying and we really need to talk about assisted living, doing everything to care for people who are in situations of disabilities,” Saba told CTV’s Vannessa Lee. He noted that many people living with a disability often live in poverty and need more social support.
“I think it’s a cheap solution for the government who doesn’t want to invest in healthcare. They’ve sold it and people have bought into it.”
The Quebec College of Physicians, and other professional associations including nurses, pharmacists, notaries, and social workers, however, issued a statement on Tuesday asking the federal and provincial governments to not delay the process with an appeal and to revise the law “without delay”.
D’Amico lives in poverty, getting just $12,000 a year from a government social program. On most days, it is not enough to cover more than a single meal. Restrictions around qualifying for government assistance prevent her from meaningfully supplementing her income with part-time work and accepting significant monetary donations and gifts -- all of which would enhance her quality of life and help pay for physiotherapy.
D’Amico said she is hopeless, that her life is not going anywhere, and the lack of care makes her feel worthless.
“I want to be free. I don’t want to die,” said D’Amico, but added that life was difficult without access to proper care, proper food, and proper technical aid to alleviate her disability.
“If I ever require euthanasia, it’s not my disability that’s killing me, it’s my own government.”
Marchand used to work as a computer network engineer in Quebec and in Australia until a severe bout of pneumonia put him in intensive care for four months. A lack of home care resources, however, forced Marchand to spend another two years in a hospital. He has spent the last seven living in a government institution.
“Several doctors have offered me euthanasia -- what they call ‘comfort care’ -- to end my life. There is no support for people like myself to live outside hospitals in Quebec,” said Marchand in a video statement, adding that he never asked to die.
“The choice I have to make is between death or living the rest of my life in a long-term care facility. I’m sorry, but that’s not a real choice.”
Marchand is the president of Coop ASSIST, an organization that provides support to help people with disabilities live independently through a self-directed personal assistance program.
In Quebec, close to 70 per cent of people with disabilities who need support live in various institutions and semi-institutions, Marchand said, adding that the government would save millions of dollars deinstitutionalizing people with disabilities instead.
To that end, Coop ASSIST is asking the Quebec government to test pilot a self-directed personal assistance program that would allow people with disabilities to decide their own care and needs, arguing it is much more cost effective for the government.
Marchand refuses to give up his life, his wife, family and friends.
“I will never apologize for my own existence. My life is worth living.”
