‘Catastrophic Pandora’s box’: Disabled Ontarians speak out against proposed MAID law

As Ottawa moves closer to allowing medical assistance in dying for those not at end-of-life, people with disabilities warn that MAID should not be an option without social supports in place
By Meagan Gillmore - Published on Mar 03, 2021
Former lieutenant-governor David Onley, shown here on September 22, 2014, says that Bill C-7 “opens up a catastrophic Pandora’s box.” (Darren Calabrese/CP)

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In early February, Sarah Jama sat on the floor of her kitchen in Hamilton and wondered how long social supports would help her live.

Her knee had popped out of its socket while she was getting a plate from a cabinet, and Jama, who has cerebral palsy, had to pop it into place again and get back into her wheelchair.

“I sit on the floor as I’m in pain, and I wonder, ‘What is it going to look like for me to live a free and equal life in the future?’” the 26-year-old recalled. 

As the federal government moves closer to changing the Criminal Code to allow Canadians to access medical assistance in dying even if they are not at end-of-life, she worries that people with disabilities, especially those from marginalized communities, will suffer as a result. There need to better housing and social supports for people with disabilities, she says. “We’re not in a place in Canada where I think MAID can exist, or even be expanded, where people won’t be coerced [into receiving it]. [We need to] make sure that proper supports are in place,” says Jama, an organizer with Disability Justice Network of Ontario.

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DJNO was one of more than 125 Canadian organizations that signed an open letter, released on February 24, that urged the government to “rethink the radical and highly divisive changes” proposed in Bill C-7 and reject the bill entirely. 

The Senate passed several amendments to the legislation in February, and the bill is currently being debated in the House of Commons. Originally introduced in February 2020, and then reintroduced in October when government returned, C-7 comes in response to a 2019 Superior Court of Quebec decision that said it is unconstitutional to restrict MAID to people at the end-of-life. The court has given the government until March 26 to pass legislation consistent with the ruling. This is the fourth extension the court has granted.

The Criminal Code says people can apply for MAID only if they have a “serious and incurable” illness, disease, or disability that has resulted in an “advanced stage of irreversible decline in capability” and intolerable physical or psychological pain that cannot be relieved in an manner acceptable to the individual. Currently, people have to be near death to apply. Bill C-7 removes the requirement that someone’s death be “reasonably foreseeable,” while keeping the others.

One of the Senate amendments would allow people whose only underlying medical condition is a mental illness to receive MAID. This change would come into effect in two years but has not yet been voted on in the House of Commons.

“Bill C-7 sets apart people with disabilities and disabling conditions as the only Canadians to be offered assistance in dying when they are not actually nearing death,” the February 24 letter states. “People with disabilities, including in particular those who are marginalized, Black, Indigenous, racialized and poor, have warned that Bill C-7 will undermine their dignity and put their very lives at risk.”

The Senate did not receive any information about the race of people who have accessed MAID. But many witnesses raised concerns that people who lack adequate social supports because of their race and disability may decide to access it.

Lisa Richardson, strategic lead in Indigenous health at Women’s College Hospital in Toronto spoke to the Senate in February as an individual, not as a representative of any organization.  “Indigenous peoples are not secure in our heath system. Racism exists in health care,” she told the Senate, citing studies that suggest Indigenous people often don’t get referred to critical health-care procedures. “My concern with this extended bill is that until we eradicate this racism in our health-care system, we will see an unprecedented and disproportionate number of our people affected by it.”

Jama understands these concerns. Most of her family is in Kenya. She has a job now, but she has relied on the Ontario Disability Support program in the past. (The provincial social-assistance program for eligible people with disabilities offers a maximum of $1,169 a month for shelter and basic needs.) “I don’t have dozens of family around me. What will it look like for me to survive in Canada as a disabled person?” she says. “It’s isolating, and it’s terrifying.”

Bill C-7 would require that patients who request MAID but aren’t dying be informed about supports to relieve their suffering, such as mental-health supports, disability and community supports, and palliative care. People approved for MAID must have, in the opinion of the medical professional providing it, “given serious consideration” to using them. However, the bill does not say that an individual has to use the supports before receiving MAID.

“The debate on Bill C-7 has highlighted the reality that many Canadians with disabilities are not sufficiently supported,” a statement from Marielle Hossack, press secretary for Minister of Disability Inclusion Carla Qualtrough says. “C-7 recognizes the significant role that social, mental health, disability and community support services play in the full realization of equality rights and in the expression of choice, and imposes a requirement that an individual be informed of the supports available to them.”

Some with disabilities find the possible expansion of MAID hopeful. “It makes me feel I’m stepping out of the Dark Ages and into civilized modernity,” says Andrew Adams, a volunteer with pro-MAID advocacy group Dying with Dignity in Chilliwack, British Columbia. Adams, 31, lives with chronic pain from abdominal migraines — a condition he describes as a combination of regular bad cases of food poisoning and migraines — which make full-time work impossible. “I almost feel like it would complete me as a person because it would liberate me from what I feel has been crushing oppression of not having bodily autonomy to make a decision and being forced to consider options that are violent or uncertain if I would have to end my life,” he says.

Adams, who has been interested in MAID since he was 11 and would like the option of receiving it in the future, agrees that adequate social supports are important. But he doesn’t think living in poverty automatically leads someone to apply for MAID. “I don’t conflate the issues,” he says. “I don’t necessarily concede that for sure people have chosen MAID because of poverty. I don’t know that to be fact. If it is true, there is an element of personal responsibility for the choices that people make. People have lived in poverty for years before MAID came.”

In early February, the United Nations special rapporteur on the rights of persons with disabilities, the special rapporteur on extreme poverty, and the independent expert on seniors and human rights wrote the federal government expressing their “grave concern” that Bill C-7 could create or reinforce an assumption that “it is better to be dead than to live with a disability.”  The letter argues that the bill contradicts Canada’s commitments in the Convention on the Rights of Persons with Disabilities to ensure that people with disabilities are treated equally and that countries do not promote negative stereotypes about disability. “It is hard to see how a legislative proposal that extend a right to medical assistance in dying to persons with disabilities who are not themselves close to death could send a signal this is compatible with obligations to combat ableism combined with obligation to secure equal respect for rights.”

The preamble to Bill C-7 references Canada’s commitments under the CRPD. Carla Qualtrough, minister of disability inclusion, “like many disability advocates, sees this as a human-rights issue,” her press secretary told TVO.org via email. “The proposed legislation explicitly recognizes equality rights.” They also pointed to commitments, made in September’s throne speech, to create a Disability Inclusion Plan that would include a federal disability benefit modelled after the Guaranteed Income Supplement, a disability employment strategy, and the modernization of eligibility for federal-government disability benefits and supports. The plan “is an important next step in advancing the rights and inclusion of persons with disabilities,” the statement says.

Former Ontario lieutenant governor David Onley says that the bill “opens up a catastrophic Pandora’s box.” Onley, who uses a power wheelchair and has long advocated for governments to make policies that benefit people with disabilities, says it would be more accurate to call MAID “physician-assisted suicide.” The bill, he says, would “make it easier for a person who is desperately entrapped, just barely holding on mentally and emotionally because of lack of government assistance, and psychologically beaten up because the system does not provide the support that it should provide — that they go to their doctor and say, ‘I can’t cope anymore.’”

Onley says he regularly hears from individuals with disabilities who feel despair. “I end up trying to convince them not to commit suicide,” he says. “We have a caste system. We just refuse to acknowledge it.”

Sarah Jama speaks with The Agenda’s Nam Kiwanuka in an August 29, 2019, segment called “Dismantling Ableism in Ontario.”

Even some who have applied for MAID want the government to reject the bill. “I’m in my 11th hour,” says one woman from rural southwestern Ontario who first asked a doctor about MAID in the fall. (Her name has been withheld to protect her privacy.) In her late 40s, she’s relied on ODSP for years since a workplace back injury left her unable to work. “I’m not depressed,” she says. “I’m poor.”  Most of the roughly $800 she receives monthly goes toward the overdraft on her bank account; her credit card is maxed out.  She’s considered stopping some medications to save money. Malnutrition has resulted in arthritis; she also has fibromyalgia, post-traumatic stress disorder, and brain injuries that affect her memory. “There’s no pill to fix poverty,” she says. “I don’t feel suicidal — except at the grocery store.”

She says she understands why people want to be able to die peacefully but is angry that Bill C-7 would make it easier for those with disabilities to get MAID. “In what universe does anybody’s situation get better when they can’t afford food and medicine? Any legislation that affords the right to die but not the right to afford to live is inhumane.”

Correction: An earlier version of this article stated that most of Sarah Jama's family live in Somalia; in fact, they live in Kenya. TVO.org regrets the error. 

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