Perhaps They Won’t Have Died in Vain: The GRIM Project
Perhaps They Won’t Have Died in Vain: The GRIM Project
Aislinn Thomas
Content notes: death, euthanasia, filicide, medical ableism
Since 2016, people in so-called Canada who are near the end of their lives have been able to receive publicly-funded euthanasia, known as Medical Assistance in Dying (MAID). Following the passing of Bill C-7 on March 17, 2021, however, anyone over 18 years old can be administered life-ending medication by a doctor—if they have a disability. This special path to early death was, and continues to be, overwhelmingly opposed by disability activists and organizations.
Right-to-die groups are advocating for MAID to expand even further in order to be available to people as young as 12 years old. Pediatricians report a growing number of requests from parents who want MAID for their children and infants. Meanwhile, the disability rights and disability justice movements continue to work to ensure our survival in an ongoing pandemic, and in the face of persistent oppression, including ableism, racism, colonialism, transphobia, legislated poverty, institutionalization, and expanding euthanasia practices.
I spoke with Catherine Frazee and Dr. Heidi Janz who have been fighting against MAID for decades. They recently began GRIM, the GRievous and IrreMediable Project, to gather the stories of disabled people who are dying by euthanasia. GRIM takes its name from the eligibility criteria for receiving MAID before the end-of-life, which simply requires that a person have a “grievous and irremediable” (i.e. serious and incurable) medical condition. Below is our conversation, recorded over Zoom on March 11, 2022, and edited for clarity and length.
Editor’s note: for more about Bill C-7, check out this 2021 guest essay by Megan Linton
Aislinn Thomas: What is the GRIM project, and how did it begin?
Catherine Frazee: It is a data-gathering project that came into being when Heidi and I and Natalia Hicks from Inclusion Canada were on a call. We started to talk about the eugenic implications of Canada’s current MAID law and the loss of life that is occurring around us. And as we spoke, it became apparent that all three of us had heard from individuals who were planning to die by MAID and wanted to share their story. Not with any explicit hope that we could save their lives, but that perhaps we could save the memory of their lives or the reason that they were going to die. And in particular, document their struggle to achieve livable lives and the ways in which that struggle was being thwarted.
And we thought that if we began to collect those stories, Heidi and I might be able to see trends, or patterns, or core issues—be it housing, be it disability supports, be it the threat of institutionalization, be it something we aren’t yet aware of—and that we would have some evidence with which to make a more compelling claim to our political leaders and decision makers. Because to date, every time we open our mouths and share a story we’re told that it’s an anecdote and it therefore doesn’t count as data. We felt that this was a place to start to assemble data in a way that was fully respectful of the desires of the people who might offer their data.
Heidi Janz: The project was born out of frustration. And the two main frustrations were the aggravation that can often come from trying to get organizations to move quickly, and the proverbial pats on the head from decision makers in the government when we use our stories to illustrate academic evidence.
Aislinn Thomas: What have you been learning so far in your conversations with people?
Heidi Janz: We have heard from people that are being compelled to “choose” MAID because of lack of support—be it housing, or income, or personal supports. We have heard a lot of what I would call despair. We have also heard from a few people who are interested in the project, then withdraw upon learning that our aim is to potentially gather evidence to dismantle MAID because they don’t want to lose what they see as the only choice for getting out of their suffering.
Catherine Frazee: We knew that we were going to be treading a delicate line, because people who are applying for MAID generally do so after great deliberation, and they’re making a very serious and weighty choice. That choice becomes very precious to them. Some people do not want to participate in anything that might take that choice away, even if it is very clear that it isn’t the choice that they would have made had the conditions of their life been livable.
We are deliberately focusing on the key phrase of the MAID equation, which is “grievous and irremediable condition.” And in the law, it’s very clear that the criteria to qualify for MAID on the basis of disability is a grievous and irremediable medical condition, not a grievous and irremediable living condition or social condition. But that distinction is not made in practice. And so we framed the project around drawing out a description of what a grievous and irremediable life condition looks like. And we still think that’s important, whatever your position on whether or not MAID should be available to people outside the limits of foreseeable death. But Heidi is quite right, there has been some indication that people don’t want to be part of dismantling that access, even though they do want to be part of making the upstream situation more equitable, more just, and more livable for all people.
The other thing that I would say has been a learning for me is the effect that legalized euthanasia begins to have in our culture. We spoke to a person who had been struggling literally for years, to extract themselves from what they described as a dungeon-like experience. At the very end, in the final two weeks, maybe, before their death, an option opened up. But they were way too beaten down for that kind of hope, for that kind of lifeline. And so, in the end they chose MAID, but I think what is really critical is that we begin to better understand how that switch gets flipped from fighting to live to just holding on until you can die. You cannot say that such choices are truly voluntary. This person had been beaten down, and it is that beating down of people’s will to live, of people’s resilience, of people’s spirit that is I think a particularly toxic cultural impact of this grand new “liberty” that Canadians have earned.
Heidi Janz: That’s a very important point and I think that’s something we’re going to see a lot more of. We’re going to see more people choosing MAID as the path of least resistance when they don’t have the energy to fight anymore.
Catherine Frazee: The movement is still working through what we are demanding, but at the very least we are demanding to reverse Bill C-7, to reinstate the end-of-life requirement. But I think we will also have to be demanding a commitment, a set of actions, to address the deadly impacts of deprivation that have made MAID peoples’ only resort. It won’t be enough for the government to say, “Oh, you’re right, we violated people’s equality, we’re gonna roll that one back.” There is going to have to be a commitment, and a meaningful commitment, with meaningful timelines, to do better in supporting the lives—the dignified and livable lives—of people with disabilities. Because one thing we’re learning from the people who are coming to us is we can’t take MAID away without providing something much more significant in its place: guaranteed livable income, appropriate disability supplements, whatever policy configurations have to be put in place to facilitate full access to home care, accessible retrofits for housing no matter what your needs are…how about house calls? I spoke to one person who made the point that she can’t get a doctor to come to her house unless she wants MAID. And then the doctor will show up whenever she wants.
Heidi Janz: If I have pneumonia, no house call. If I want MAID because I have pneumonia, bingo.
Aislinn Thomas: The “grievous and irremediable” criteria for MAID has always struck me as very broad and therefore dangerous. How do you define grievous and irremediable? And, more importantly, how are doctors on the ground defining “grievous and irremediable”?
Catherine Frazee: Grievous means serious, and every illness or disease or disability that has a medical definition is, by definition, serious—a serious departure from “the perfect healthy specimen.” Many doctors subscribe to that definition, in my experience. There are certainly medical experts who would say that just about everything is a grievous condition.
The irremediable part of it is, I think, the dangerous part when it drifts out of the realm of medicine. Irremediable means “not curable.” But no social condition is irremediable. Poverty isn’t irremediable ever, no matter how deeply entrenched across generations. Isolation, abandonment, social stigma, violence—none of these things are irremediable. It takes a great deal of political will–not individual will. It takes a great deal of political will to alter these conditions, but they’re not irremediable. Being forced to leave your home and move to an institution because you don’t have caregivers to come to your home is certainly not an irremediable condition. It’s very fixable. It depends on your political imagination whether or not you see a problem as irremediable and also how are you calculate the worth of the person who requires the remedy.
Heidi Janz: Basically, because of systemic ableism and the medical model of disability, my life, Catherine’s life, any disabled person’s life, is considered grievous and irremediable.
For example, almost 12 years ago I needed to have a feeding tube put in. Medically speaking, I now rely partially on artificial nutrition and hydration. If the general public hears “feeding tube” they think end-of-life. If I was to walk into any ER and say, “I’m experiencing chronic pain in my tube site. I’m done, I want MAID.” I would quite possibly get MAID in a very short while. And the general public would think, “obviously she was suffering.” But was I depressed? Was I having financial problems? Was I having relationship problems? None of that would even be considered. That’s how ableism works. And this is why it seems like such a hopeless undertaking to try to dismantle MAID. And yet, we keep trying because our survival depends upon it.
Aislinn Thomas: What do you say to the argument, made by legislators, that MAID is a compassionate option given the suffering that people experience?
Catherine Frazee: Well, it’s hard to accept that even as a good faith question—not from you, but from the legislators. They speak of compassion and yet, where was the compassion when Person A or B wrote or spoke or pleaded with their Member of Parliament, or their caseworker, or their landlord for a shred of dignity and accommodation? There’s no compassion there. So it just feels like a bad faith proposition to be then advancing compassion as the reason for legislation that makes the problem go away by ending the life of the person who is experiencing the problem—a problem created by the society that has abandoned that very person. It seems to be an extension of the politics of abandonment to then resort to compassion as the reason for supporting MAID.
But you know what, that analysis just flies over decision-makers’ heads. I don’t know how to speak in language that works for them, that has some effect.
Heidi Janz: But I think that’s what systemic ableism does. There is no language that can penetrate without having them acknowledge that systemic ableism is real and that it kills people
Catherine Frazee: Yes. Systemic ableism is a deadly force. And it’s a deadly force that works in really, truly subversive ways. It exploits weakness—and I say that with the greatest of respect for people who are at their weakest point—in order to make the problem disappear. It’s a political problem that is being disappeared here.
Aislinn Thomas: I’m curious about what will be happening with people’s contributions, stories, and data that you’re collecting. Will you be archiving it in some way?
Catherine Frazee: We don’t know yet what that’s going to look like. Every person’s level of permission is a bit different. We ask people if we can share their data with researchers who are writing articles that accurately represent how MAID is affecting people with disabilities and how gaps in our social safety net are driving people toward MAID. We ask people if we can share their data with lawyers who we know are taking cases forward to the courts. We ask people if they would be comfortable with us using their words in literary works, or plays, or documentaries. We’ve had people give us videos to make available for film projects. According to consent, there are many different ways that this material could be brought to public light.
Aislinn Thomas: Are you aware of other efforts, including legal and mutual aid efforts, that are underway to challenge Bill C-7 and to support the survival and flourishing of disabled people in the context of this new reality?
Catherine Frazee: There are a number of international fora that we—members of the community, coalitions of grassroots, regional and national disability associations—are pursuing. For example, from conversations with the Special Rapporteur for Disability at the United Nations, we have good reason to assert that Bill C-7 violates the United Nations Declaration of the Convention on the Rights of Persons with Disabilities.
Domestically, we are aware that there is at least one legal action being prepared to challenge the law. The Truchon decision, upon which Bill C-7 is based, was never tested in federal court. Canada’s expanded criteria for MAID has to go to the Supreme Court of Canada. But the disability rights movement has to take it there because the law didn’t go through what would have been the normal legal process for such a significant policy change.
I happen to know of at least two other cases that are taking somewhat different approaches. One brought by the daughters of a woman who died by MAID who didn’t know about it, and thought was ill-advised and unlawful. There is also the case of Roger Foley in Ontario, who found that he was being severely pressured to pursue MAID rather than have his desire for proper attendant care met. I think a lot of people are taking action legally in the face of this unconscionable law. And there may be more as the law continues to expand, to capture more and more people in it’s net.*
Heidi Janz: The single-mindedness of this government pushing Bill C-7 through the way it did was shocking, it truly was shocking. And it happened in a pandemic when the public discourse was, “we’re all in this together.” To have this government push the legislation through without having the lower court decision appealed was stunning.
Catherine Frazee: I recently heard a presentation by a researcher, Deborah Stienstra, who had done a major study of the pandemic experience among people with disabilities. During her presentation there was a question about whether MAID had come up in any of her interviews. And both she and her research assistant said, yes….people with disabilities who were reporting on their pandemic experience also reported, without prompting, that the advance of Bill C-7 was, in their words, “a slap in the face” while they were trying to survive a pandemic. So, it’s not just Heidi and me. It was pretty universally felt across the community.
A lot of us had the wind knocked out of us when Bill C-7 finally passed. The level of burnout was just pretty spectacular in our community. I can certainly speak for myself and see how it’s taken a while to regroup and to reenergize and to refocus. And to determine in our immense rage, where to focus that rage. And I think the GRIM project, for Heidi and me, gives us an opportunity to be thoughtful and strategic, but also to offer our version of mutual aid, which is listening respectfully, hearing people out, and assembling a portfolio of evidence.
This interview, of course, comes at a particularly troubling time across the planet, and it’s hard sometimes to feel that one’s efforts are the right efforts, or that we’re doing the best that we can in our situation. But we just have to do what we can. And if nothing else, we are leaving a record for posterity. At some point, perhaps the human race will awaken to the dangers of these kinds of policies. It won’t be soon enough to save the lives that have already been lost. But they perhaps won’t have died in vain. It’s very dark.
Heidi Janz: It’s grim.
The GRIM Project continues to document people’s stories. If you or someone you know is considering MAID as a result of unmet needs or intolerable living conditions and would like to participate, you can reach out through email: GRIM@web.net
Endnote
*Beginning March 17, 2023 people whose sole diagnosis is a mental health condition will be able to seek and receive MAID on the basis of that diagnosis.
ABOUT
Catherine Frazee (she/her/hers) is a writer and retired educator, living a charmed and joyous elder crip lesbian life as close to the sea as possible. When not consumed by the demands of persistent decrepitude, she spends her spare time wrestling with autonomy run amok, and holding out for kinder, gentler understandings of liberty and title.
Heidi Janz, Ph.D. (She/Her/Hers) is a Core Faculty Member and Assistant Adjunct Professor with the John Dossetor Health Ethics Centre at the University of Alberta. Her areas of specialization include Disability Ethics, Critical Disability Studies, and Research-Based Drama. She is also an active disability-rights advocate at the national level. In her “other life,” she is a writer/playwright and filmmaker. Her creative work focuses on making the experiences of people with disabilities accessible to audiences made up of both people with disabilities and people who are temporarily able-bodied. Heidi Janz also has cerebral palsy.
Aislinn Thomas (she / her) is an artist living on ancestral and unceded Mi’kmaw territory in Unama’ki / Cape Breton Island. Aislinn is indebted to the work of disability rights and disability justice activists. She gratefully works alongside and in the legacy of so many who value the disruption of disability and treat access as a space for creative acts.
Website: https://aislinnthomas.ca/
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