MAID in Canada: a radical response to changes in medically assisted dying

MAID in Canada: a radical response to changes in medically assisted dying

New legislation in Canada is making it easier than ever to receive medical assistance in dying, but disability activists are sounding the alarm.

Although Canada as a state has recently been forced to reckon with a curve in public consciousness around its violent settler-colonial legacy, an understanding of the deeply entrenched prejudice towards people living with disabilities within Canadian legislation has received scant media attention. This neglect itself is an expression and extension of colonial and capitalist ideology which privileges typically-abled bodies that are seen as productive for the system. Artist and advocate Aislinn Thomas argues that while the Canadian government denies disabled people the things they need to thrive and flourish, it meanwhile offers a fast-track to medically assisted dying. In this piece, Thomas investigates the development of Bill C-7, its sinister implications, and the disabled community’s response to the bill in Canada.  American justice educator and disability activist Mia Mingus says that “access done in the service of love, justice, connection and community” can be liberatory and transformative. Thomas argues that the type of access Bill C-7 provides—access borne of a system that values efficiency, productivity, and convenience—doesn’t value disabled lives in the first place. Instead, they call for a type of access and care, punctuated by love, that embraces disabled lives as a welcome disruption.

An erasure poem entitled "Bill C7: An overview of Available Help" by Jane Shi, 2021.  The image is two blocks of text mostly blacked out except for the words: competing individuals eligible for Superior dying; They must be intolerable.
Jane Shi, 2021 based on the document
“Bill C-7: An Act to amend the Criminal Code (medical assistance in dying)

The Canadian government further tramples on the rights of people with disabilities—in the name of human rights

Content notes: ableism, racism, classism, settler colonialism, assisted death, assisted suicide, suicide, eugenics, filicide

In the middle of a pandemic, and with manufactured urgency, the Canadian federal government passed Bill C-7, an amendment to the criminal code that expands the country’s medical assistance in dying (MAID) regime. MAID was initially intended as an alternative to a painful death. It is now available as an alternative to a painful life—if you have a disability.

Medical assistance in dying legislation has been in place since 2016, and from the beginning there have been concerns. Disability advocates and the United Nations flagged the practice of MAID as a threat to the right to life of people with disabilities. Still, the Canadian government opted to expand MAID further, making a special track to early death for disabled people—without undergoing the legally mandated parliamentary review of MAID that was supposed to begin in June of 2020. In a recent public statement, the United Nations cautioned countries against making state-administered death available on the basis of disability, declaring that “under no circumstance should the law provide that it could be a well-reasoned decision for a person with a disabling condition who is not dying to terminate their life with the support of the State.” In a detailed letter specifically to the Canadian government, the United Nations outlined the multiple international human rights agreements that Bill C-7 is in contravention of—agreements that the Canadian government is signatory to. Yet in early February, 2021, the Senate voted to expand Bill C-7 further still, targeting people with psychiatric disabilities for inclusion in this special track, and co-opting the language of access, human rights, autonomy, and right to self-determination to justify it.

Senator after senator described the safeguards put in place to minimize the harms of assisted suicide as “barriers” to accessing MAID. Many lawmakers claim that state-administered death is a basic human right, and that to withhold it from disabled people would be discriminatory. They declared it necessary to push this bill into law quickly in order to alleviate disabled suffering. As Jonas-Sébastien Beaudry observes, “No one denies that Bill C-7 opens up access to medically assisted suicide in the name of respect and compassion, but we should remember that oppression has a habit of being packaged as a benefit for the oppressed.”

As most disabled people will tell you, our bodies are not the main source of our suffering. Systemic discrimination and an utter dearth of support is.

Disability organizations and activists across the country remain united in their opposition to this bill. Andrew Roman, a retired lawyer who testified during the Senate’s study of Bill C-7, made the audacious claim that disabled people do not experience widespread abuse in Canada. In fact, the majority of federal human rights cases in this country are on the basis of disability. People with disabilities experience poverty at much higher rates than non-disabled peers. Disabled women experience alarming rates of violence and abuse. Forty-five percent of unhoused people are disabled or diagnosed with a mental illness.

An image of Jane Shi with black bangs and chin-length hair. She is wearing a v-neck black shirt and has large, brown tortoise-shell glasses.  She is holding half a pomegranate in one open hand, and behind her is a desk with a shelf of books and a stuffed toy monkey. There is a close up of her face superimposed on the photograph, and the photograph is warm with sunlight.
Jane Shi, photo by Divya Nanray

Tyler White, CEO of Siksika Health Services in Siksika Blackfoot First Nation in what is colonially known as Alberta, offered testimony about how Indigenous people are disproportionately disabled due to the ongoing effects of colonialism. “Efforts to suggest to our people that MAID is a dignified end for the terminally ill or those living with disabilities is a form of cultural colonialism.” Multiply-marginalized people with disabilities—Black, Brown, Indigenous, poor, and Trans people who experience added layers of oppression based on race, economic status, and gender—will be the most negatively impacted by this legislation. Very few people with such lived experience were included in the Senate hearings. Those who were had their analysis and expertise repeatedly undermined. 

It is a pernicious expression of ableism that disabled people are not seen as reliable witnesses of their own experiences. Our concerns are not “perceived fears,” to quote Senator Dupuis, but are robustly grounded in the reality of how MAID, medical ableism (discrimination in the medical system based on ability) and medical racism, audism (prejudice against people who are hard of hearing or Deaf, sanism (discrimination against people with psychiatric disabilities or mental health issues or who are neurodivergent), classism, transphobia, sexism, and carceral ableism are functioning. 

Why is it that lawmakers want to enshrine the right to die by lethal injection before even beginning to meaningfully address the material conditions of disabled people’s lives?

These systems cause ongoing trauma, discrimination, and harm. These systems have already successfully devalued and ended disabled lives, resulting in the loss of disabled kin who would have preferred to live with the supports they needed to do so—an option they were denied. Chris Gledders recently received MAID as he lay in a bed with his own feces and urine in an Ontario long-term care facility—conditions he’d been experiencing for weeks, and that hisfamily cites as at least partially responsible for his choice. He was able to find providers who were comfortable administering MAID in these conditions. Sean Tagert made it publicly known that he wanted to live but was denied access to funding for the home care that he needed.  He too was able to find MAID providers to end his life. Rodger Foley recorded healthcare providers raising the subject of MAID, citing the cost of his ongoing care. At least one MAID applicant is applying because of the legislated poverty that is provincial disability assistance. Jean Truchon himself cited the conditions in his long-term care facility in Montréal, Québec, as part of his choice to receive an assisted, early death. 

These are just a few of the stories that we know of disabled lives cut short.  Surely there are many more that are not on the public record. Research reveals that the majority of doctors hold false and harmful views about disabled lives. For disabled people who have interacted with the healthcare system, this is not surprising. Gabrielle Peters and Dr. Heidi Janz, who testified in front of the Senate, each described the open hostility of healthcare providers who were indignant that they refused to put “Do Not Resuscitate” orders on their charts. Jonathan Marchand described being pressured by multiple doctors to opt for euthanasia. As most disabled people will tell you, our bodies are not the main source of our suffering. Systemic discrimination and an utter dearth of support is. For those without financial means, family support, or the ability to “perform” in society, being disabled within Canadian systems is incredibly precarious. Suicide is a natural thought process for someone prevented from meeting their basic needs.  Disabled people need deinstitutionalization, home care, income supports, appropriate medical care, affordable and accessible housing. What is on offer is early death.

A poem in a black serif font on a white background. It is entitled "protect u at all costs" by Jane Shi, 2021. It reads, who sandwiched let/between freind & friend? not sandwiches/but poison pill power slips into your pocket/forgetting it's not pushy—it's not too much/shouldn't be so hard to say "baobao/that's not gonna fucking happen. i love you so much/we're gonna get you out. we're gonna"   The word "live" is on the next line.
the words "your" "you" and "i love you so much" are written in text shorthand.
Jane Shi, 2021

The messy truth, of course, is that disabled people are not a monolith.  We are at this point in the legislative process.  For those without financial means, family support, or the ability to “perform” in society, at least in part, because Nicole Gladu and Jean Truchon, two physically disabled people, wanted to have the option of state-sponsored early death and brought their case before a Québec court in 2019.  Bill C-7 was shepherded through the senate by Senator Petitclerc, who is a Paralympian.  The Senate hearings included a white, affluent, disabled man who testified that national disability organizations did not represent his views.  He, and others he knows, would like to die via MAID at a time of their choosing.  Like the government, the media chooses to present MAID as a debate that divides individuals.  But Bill C-7 must be scrutinized with an intersectional power analysis.  It is the only way to understand the full impact and risk of this legislation.  As Senator Kim Pate expressed, Bill C-7 was crafted to benefit the “well but worried, well-off and white.”  Dying with Dignity, a pro-MAID lobbying group that is now agitating for “mature minors” with disabilities to have access to MAID, has the support of many Canadian cultural elites.   

Legislating a special track to early death for disabled people may allow Nicole Gladu to die in her home watching the sunset with a glass of pink champagne in hand, but at what cost?

Disability has been described as the only equity-seeking identity that any person might claim at any moment. Yet there seems to be a collective failure of imagination when it comes to conjuring what it is like to be disabled.  During the Senate debates, multiple Senators shared their fears that they may one day develop dementia. Of course, no one is eager to join our ranks. Still, why is it that lawmakers want to enshrine the right to die by lethal injection before even beginning to meaningfully address the material conditions of disabled people’s lives?

This pandemic has underscored and deepened many gross inequities in our society.  Disabled people are facing newly-blatant ableism including discriminatory triage protocols that de-prioritize care to disabled people, and heightened vulnerability in long-term care facilities. The $2000 per month Canada Emergency Relief Benefit (CERB) that supported people who lost work during the first months of the pandemic is well above (in some cases almost twice as much as) the amount of money disabled people receiving provincial income support are expected to live on. Although staunchly resisted by some, the pandemic has also invited us to consider the importance of community wellbeing over individual liberty. As MAID to MAD, a group of concerned physicians, states, “the exercise of personal autonomy, far from being the supreme value in society, must be limited when it can lead to harm to others.” Legislating a special track to early death for disabled people may allow Nicole Gladu to die in her home watching the sunset with a glass of pink champagne in hand, but at what cost?

A black and white photo of Aislinn Thomas standing, speaking at a microphone. She is wearing a striped collared shirt rolled up at the sleeves, and is gesturing with her hands. She is wearing jeans and white sunglasses. Her skin is pale and her hair is cut in a short curly bob.
Aislinn Thomas

To the extent it is acknowledged at all, the analysis disabled people provide in opposition to Bill C-7 has been continually described and delegitimized as “fears” by those in power. I would argue that the passion expressed by so many disabled people is, however, the appropriate response. As Trudo Lemmens points out, politicians seem to be pretending that this is a new conversation, one that is detached from the traumatizing legacies and ongoing practices of eugenics.  

Politicians seem to be pretending that this is a new conversation, one that is detached from the traumatizing legacies and ongoing practices of eugenics.

So many politicians choose not to acknowledge that many disabled people in what is now called Canada are also poor, racialized, struggling to survive, and not afforded access to the resources needed to live—let alone thrive. Offering early death for disabled people in this context is not just morally reprehensible—which it most certainly is—it is also a collective loss. Missing from the conversation is the fact that disabled people not only have a right to survive and thrive, but that disabled lives enrich our world. Not according to the brutal logic of capitalism, perhaps, but in a deeply human way. Grief, fear, outrage, and trauma are appropriate responses to this status-quo and to the expansion of MAID. 

In a welcome turn of events on February 9, 2021, Senator Marilou McPhedran proposed an amendment to Bill C-7 that would remove the special track to early death for people with disabilities stating, “this bill dresses up discrimination and calls it a right.”  For days the amendment was held up on a point of order on the grounds that it was in conflict with the central goals of the legislation. In the end, the Senate was not afforded the opportunity to consider the amendment. Still, Senator McPhedran’s speech was a powerful re-orientation that recognized and validated the lived experience of so many disabled people. She saw Bill C-7 for what it is: yet another ableist “solution” for people with disabilities—one that will impoverish all of our lives. Sadly, though there were other outspoken voices of truth and wisdom in the Senate, including Senators Mary Jane McCallum, Yonah Martin, Victor Oh, and Denise Batters, ultimately too few Senators were able to set aside their own fears and summon the moral courage necessary to respond appropriately. The bill was sent back to the House of Commons with amendments that made it even more dangerous, including a sunset clause on the exclusion of people seeking MAID on the basis of psychiatric disabilities, and the option—via advanced directives—to waive the requirement for consent at the time of assisted death. The Canadian state now has fewer safeguards and is the most liberal assisted dying regime in the world.

The Disability Filibuster

An image of the Disability Filibuster on Zoom. There are three video images included: In the top left is Catherine Frazee. She has pale skin and dark rimmed glasses and is lying back on a pillow with her hair tied back, speaking into a microphone. Another person is partly in view in the frame. In the top right corner, we can see Aislinns' face and shoulders. She has pale skin, curly red hair to her chin, and a mustard yellow scarf. In the bottom center is the ASL translator, Aaron Medlock, in a black collared shirt, with pale skin, short hair combed back, glasses, and a blue background.
Professor Catherine Frazee, Aislinn Thomas, and ASL interpreter Aaron Medlock at the Disability Filibuster in March 2021. “And so what wouldn’t you do for love?”

Watching the Senate hearings and debates was an emotionally taxing affair.  While I danced during Senator McPhedran’s speech, more often I alternated between crying, feeling like throwing something, and feeling like throwing up. In response to this agonizing experience and the inability to travel to Ottawa to demonstrate in person, disabled organizers created the Disability Filibuster, an online protest and inter-generational expression of cross-disability solidarity that was available to anyone with a stable internet connection. Spearheaded by Gabrielle Peters and Catherine Frazee, the filibuster was a 24-hour livestream that allowed us to collectively create a public record of our opposition and bear witness as Bill C-7 was further fast-tracked into legislation. 

Missing from the conversation is the fact that disabled people not only have a right to survive and thrive, but that disabled lives enrich our world.  Not according to the brutal logic of capitalism, but in a deeply human way.

Disabled people were invited to sign up to host segments, and there was a wide range of contributions. After being briefly shut down due to Zoom bombers, Disabled contributors read academic papers, had conversations, read books from bed, did improv, sang, read poetry, shared disabled history, and shared space together. Disability scholar Kelly Fritsch defines “crip” as “to open up with desire to the ways that disability disrupts.” The filibuster was a beautiful example of crip culture. It went at the pace of care and was shaped by the needs of all involved.  

A photo of a zoom session with four quadrants published on YouTube of the Disability Filibuster held in March of 2021.  Brianna Price is in the top left corner. She has pale skin, long blonde hair, headphones, black-rimmed glasses and red lipstick. Jane Shi is in the top right corner. She is Asian with brown hair to her shoulders, a red blouse, tortoise-rim glasses, and she is smiling. In the bottom left corner is Sunny Chiu. Sunny is Asian with round, thin rimmed glasses, and a black braid. She is sitting under a blanket but we see her tatooed arm and brown and white tanktop tied in bows at her shoulders.  In the bottom right is the ASL interpreter. She has brown skin and short reddish brown hair and wears glasses, headphones, and a black shirt, and is gesturing with her hands.
Jane Shi, Brianna Price, Sunny Chiu and their ASL interpreter at the Disability Filibuster, an online protest to Bill C-7, in March 2021

A recent Statistics Canada report revealed that in 2020 nearly 90 percent of those who died from Covid-19 “had at least one other comorbidity.” In other words, as Gabrielle Peters points out, they were disabled. As organizers consider next steps and disability organizations explore options for national and international legal pathways to address the state of human rights of people with disabilities in Canada, it could not be clearer that the state does not have the best interests of disabled people at heart. We are a long way from having any kind of mainstream understanding of ableism and its intersections. I think often of the wisdom of Disability Justice organizers including Mia Mingus, Patty Berne, Syrus Marcus Ware, and Sarah Jama who caution against seeking solutions from the State and other systems that rank the value of individuals and continually leave people out.  

Some organizers have been opposing the expansion of assisted death for decades, ever since 1993 when 12 year-old Tracy Latimer was murdered by her father in what was largely condoned by the media as a “mercy killing” on the basis of her disability. During the filibuster I asked Catherine Frazee about the source of her tenacity given how traumatic this issue is. “It’s love,” she said. “We love our people. What wouldn’t you do for love? You do everything you can do.”

A radical alternative to the status-quo is possible, and we cannot rely on the state to realize it. Motivated by the love of our people and the desire to leave no one behind, we can create spaces that actually desire the disruption that disability offers. Our very lives depend upon it.


Further resources
Canada’s Newest and Deadliest Human Right: Assisted Suicide for All, Lynne Cohen, C2C Journal (online article)
Death on demand: has euthanasia gone too far?, Christopher de Bellaigue, The Guardian (online article)
Legislators who want to make medically assisted dying easier for persons with disabilities don’t know the lived realities of disability, Sarah Jama, Quoi Media (online article)
Canada’s proposed expansion of assisted-death threatens to push the mentally ill out the door, Andray Domise, The Globe and Mail (online article)
Taking MAiD way too far, Gabrielle Peters, Macleans (online article)
Dying for the Right to Live, Gabrielle Peters, Macleans Magazine (online article)

A new wave of anti-ableist and anti-eugenics organizing in Canada, Talking Radical Radio
(embedded SoundCloud audio file + transcript)
Disability, Death & the Fight for Justice, Megan Linton, Disability Visibility Project (online)
Death By Coercion: a panel on the impacts of changes to medical assistance in dying on Black Queer Sick and Poor communities, with Featuring @ALYSM745 (anonymous MAiD applicant), Ameil Joseph, Syrus Marcus Ware, and Trudo Lemmens.

Filed Under: Articles & Essays

Written by

Aislinn Thomas is a disabled interdisciplinary artist. She gratefully works alongside and in the legacy of so many who out of necessity treat access as a space for creative acts. Aislinn is a white cisgender settler of Ashkenazic and UK descent. She lives in Unama’ki/Cape Breton, on ancestral and unceded Mi’kmaq territory.

Poetry by

Jane Shi is a queer Chinese settler living on the unceded, traditional, and ancestral territories of the Musqueam, Squamish, and Tsleil-Waututh First Nations. Her poetry, essays, reviews, and multimedia art has appeared in Briarpatch Magazine, grunt gallery, and the Disability Visibility Project blog, among others.

 

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