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Last Resorts

For the disabled, assisted dying can be eugenics by another name

Gwen remembers the moment she realized she had no choice but to let the Canadian government kill her. “It felt inevitable, me having a heart attack from this pain and my child being left to find me,” she says. “It was just terrifying.”

Gwen, whose real name is not being used for privacy reasons, has been suffering from degenerative neuropathic pain ever since a spinal injury in 2013. Already living with fibromyalgia and Ehlers-Danlos syndrome, the physical trauma sent her nervous and immune systems into a debilitating spiral. “Your body gets confused when it’s in this type of constant, unrelenting pain,” she explains. “Your brain thinks it’s under attack, so there’s a constant fight-or-flight mode that worsens the symptoms and attacks your mental health.” When her condition was at its worst, every nerve in her body cried out—“like having bees buzzing in my flesh”—to the point where she couldn’t even let her own daughter touch her. She had to travel hours to see specialist doctors from her small town in British Columbia, who would either recommend supplements or prescribe expensive, addictive painkillers. Her only long-term option was ketamine infusion treatment, not covered by BC’s health care system. Her GoFundMe is raising at least $44,000 to pay not just for the infusions but for transportation, assistance, and childcare during the recovery process.

Living in poverty, Gwen felt her only choice was to become one of the growing number of disabled people using Canada’s world-leading Medical Assistance in Dying (MAiD) program simply because the state refuses to provide them with quality of life. “My doctor was acting like she couldn’t hear me,” she remembers of her initial attempts to communicate this decision. “She kept encouraging me to try anything else . . . but there was nothing else to try.”

MAiD was first implemented in 2016, ostensibly to provide relief for people with terminal illnesses or any disease or disability that causes intolerable suffering and has no possibility for improvement—and it has done so for many. However, as early as April 2019, the United Nations Special Rapporteur on the rights of persons with disabilities expressed she was “extremely concerned” that Canada was not ensuring disabled people seeking state-assisted suicide had been provided with viable alternatives before making the choice. In a report to the Human Rights Council, she warned that “assisted dying must not be seen as a cost-effective alternative to providing services for persons with disabilities.”

By all appearances, however, that’s exactly what’s happening. High-profile cases such as that of veteran and Paralympian Christine Gauthier, who testified that she was offered a referral to MAiD after being denied an accessibility ramp for her home, represent a rapidly deteriorating crisis for Canada’s most vulnerable. While the Department of Veterans Affairs has denied Gauthier’s story, they acknowledge at least four cases in which a Veterans Affairs staffer is believed to have inappropriately suggested MAiD. The issue has been turned over to the RCMP, Canada’s federal police service.

Disabled people and advocates fear that medically assisted suicide will become a weapon for the state to do away with what capitalism considers unproductive bodies.

Now the Canadian government is considering an expansion to MAiD that includes those with mental illnesses like depression, anxiety, and PTSD. This change was scheduled to officially go through this month, but its implementation was recently delayed to “give provinces and medical professionals time to get ready for the change.” Disability Justice Network of Ontario (DJNO) called the delay a “huge win,” saying it proved that “the government rushed this [decision] through, which would cause a great loss of lives for disabled people.” MAiD’s expansion was placed under review by the Special Joint Committee on Medical Assistance in Dying, who offered their final report on March 9. However, Liberal justice minister David Lametti is confident the legislation will still pass, adding there is “widespread support” for the motion. And the committee is also considering other eligibility expansions, like terminating severely ill newborns, or allowing teenagers to access state-assisted suicide.

Canada’s provincial health care systems are already collapsing—emergency rooms in rural BC have been overflowing, while Ontario narrowly averted a general strike over nurses’ pay last November. Meanwhile, all of Canada is lagging far behind other OECD countries in hospital beds per one thousand people. At the same time, long Covid has the potential to cause incalculable but unprecedented levels of mass disability in the coming years. With climate change and economic crises also imminent, disabled people and advocates fear that medically assisted suicide will become a weapon for the state to do away with what capitalism considers unproductive bodies. “It’s eugenics,” says Gwen’s friend Bunny (not their real name), who started the GoFundMe for Gwen’s treatment over the summer. “There’s no other way to describe it . . . if you won’t give me money for housing, you won’t control the market so that I can afford housing, but you’ll give me money to kill myself, then that is eugenics.”

There is already a strong historical precedent for eugenics in Canada. Alberta and British Columbia both had Sexual Sterilization Acts that lasted until the 1970s, which were enforced by provincial Eugenics Boards to explicitly target disabled people, forcibly sterilizing an estimated three thousand over five decades. Today, Canada’s medical systems practice eugenics in less obvious ways, such as provinces enthusiastically harvesting organs from those who die by state-assisted suicide. “[Canada] has a long history of eugenics that seeks to remove disabled people from our communities,” says Megan Linton, researcher and advocate with DJNO. “Whether it be through MAiD, or through institutionalization, or just through complete social isolation . . . it’s the process of removal.”

As researchers Beatrice Adler-Bolton and Artie Vierkant theorize in their book Health Communism, capitalist health care systems impose a “eugenic and debt burden” on all subjects, insisting that anyone unable to meet maximum productivity is a drain on both the state and their community. Capitalism then enforces this eugenic logic by constructing a “surplus population” from those left unable to generate capital, who are then alienated from its benefits. “Capitalism is dependent on eugenic ideology to maintain the workforce . . . the belief [is] driven into us that makes all of us, sick and healthy, feel like a burden on the state,” explains Linton.

Adler-Bolton and Vierkant argue that much of capital’s power comes from its monopoly over “social determinants of health,” or the economic and political factors that subject us to “slow death” from the devastating physical and psychological effects of capitalist exploitation and alienation. When someone’s burden outweighs their productive value, they become part of the surplus, which the state and capital both consider a drain on resources. Capitalist eugenics eliminates this burdensome surplus and keeps workers in constant fear of being relegated at the first sign of illness, disability, or economic downturn. “The expansion of MAiD must be viewed within the context of this economic order, which is . . . encouraging the government to retreat from its responsibilities to the public’s welfare,” says Linton. “So now the state appears generous to provide mercy from the austerity that they actively designed.”

In reality, the Canadian state is anything but generous. One in four working-age disabled people live below the poverty line in Canada, according to Statistics Canada, and disabled people are twice as likely to live in poverty as abled people. Disability assistance programs vary by province, but all fall short of providing quality of life. For Gwen, the maximum monthly payment for a single parent in BC is about $1,250, which is meant to cover rent, food, transportation, medication, and childcare.

Fortunately, Gwen says her GoFundMe went viral enough to cover an initial round of ketamine treatment, providing her first glimmer of hope in years. She was able to spend Christmas out of her wheelchair and was very thankful to play with her daughter again. “It’s good I finally have a bit of strength to fight,” she says. However, the effects of her infusion are already wearing off, and she’s once again behind on raising funds for the second round of treatments. Without continued support, it won’t be long until she’s back in her chair feeling bees under her skin. Accessing this care is on hold while she moves into a new apartment, after the home she was living in with her daughter was suddenly condemned.[*]

And even then, Gwen’s relative success is an outlier compared to the countless disabled people across Canada who have been pushed to seek MAiD. Over the course of her fundraiser, she lost a friend to these exact circumstances: Jennyfer Hatch, who was featured in a commercial documenting her last days, died from state-assisted suicide after years of failing to find government support for her Ehlers-Danlos syndrome.

Left movements need to reclaim the very definition of health itself if they want to challenge capital’s chokehold on health care. 

“It’s fucking terrible that we have to say [Gwen] was lucky to access medical treatment,” says Linton, but “she’s part of a much bigger story about the failures of the Canadian health care system, and the failures of neoliberal austerity politics.” Linton says these systems are not only intentionally designed by the state but fundamental to maintaining capital’s stranglehold on our collective health, and by extension our lives. And she notes that surplus populations are not the only ones suffering under this health care regime. “We are all debilitated by systems of capitalism,” she explains. “People don’t see themselves as being disabled, even if they acknowledge having mental illness like depression or anxiety caused by capitalist conditions,” as well as common physical workplace injuries that accumulate over years. 

Adler-Bolton and Vierkant conclude that left movements need to reclaim the very definition of health itself if they want to challenge capital’s chokehold on health care. By “centering the surplus” and listening to the demands of disabled, mentally ill, and even queer, trans, and racialized patients, movements can create a new paradigm of health unmediated by institutions and the surveillance of our medical data. This requires building solidarity between not just workers and surplus but doctors and patients. Organizations like DJNO have been collectively fighting for this solidarity from the patient side, but as Linton points out, while there are doctors fighting against MAiD and its expansion, they aren’t challenging the underlying austerity and eugenics that fuel the expansion.

“Doctors need to be part of the wider politics and centering of the surplus, like labor movements and disability movements,” Linton continues. “This isn’t a one-time fight, this is a fight for the next many decades that will require a lot of solidarity. We need doctors that challenge the status quo and aren’t afraid to be labeled as destructive by the medical system.”

Gwen is currently no longer seeking state-assisted suicide. Still, both she and Bunny understand the bleak path ahead not just for Gwen’s treatment, but for the growing number of workers who will be joining surplus populations in the coming years. “People aren’t in touch with the fact that this could be them,” says Bunny. “Everybody is one really bad accident away from having intractable pain, or losing mobility functions that they relied on.”

“This is not an okay way to live,” they continue. “It’s not okay for society to be like this.”

[*] Correction: A previous version of this story stated that Gwen’s home had been suddenly condemned and demolished. It was condemned, but has not yet been demolished.