Disability, Death & the Fight for Justice

Disability, Death & the Fight for Justice

Disability Justice in Canada amidst a time of pandemic 

Megan Linton

 

Content notes: genocide, systemic ableism, medical aid in dying, eugenics, institutionalization, bodily autonomy, abuse, neglect, suffering

 

COVID-19 has brought with it devastating ableist violence– eugenicist triage protocols, mass death in residential institutions and the normalization of disabled death. In Canada, this ableist violence has only been complemented by legislative attacks on the right for disabled people to live good lives–most notably, Bill C-7.

Bill C-7 expands Medical Assistance in Dying (MAiD) to disabled people regardless of their proximity to death. Disabled people and their allies fought to kill Bill C-7. Last week, three UN Special Rapporteurs unanimously condemned Bill C-7, noting that “Such legislative provisions would institutionalize and legally authorize ableism, and directly violate the UN Convention on the Rights of Persons with Disabilities.” 

This fight has spurred forth a new movement for disability justice across Canada. This movement, activist Sarah Jama explained in an interview with the author for the Disability Visibility Project, that this “Was the first time that I saw the disability community and whoever it is made up of trying to come together––in a cross intergenerational way, cross disability way, we had black and indigenous people at the table. It wasn’t just a bunch of organizations, it was grassroots folks who are weighing in from across the country.”

In conversation with Activist and Disability Justice Network of Ontario co-founder Sarah Jama, academic & author Kelly Fritsch and long-time disability advocate, poet and philosopher Catherine Frazee, we consider the impacts of these attacks on disabled lives and the possibility of disabled futures. 

Poverty, Institutionalization & COVID-19

As the significance of the impact of the pandemic becomes clear, Prime Minister Justin Trudeau announces federal support of $2,000/month for Canadian workers. Contrastingly, disabled people across the country continued to live on as little as $820/month. 

These low social assistance rates legislate disabled people into ongoing poverty, making it difficult to access housing, food, pain management and life sustaining activities. Journalist and advocate Gabrielle Peters explains “Some are considering MAID because they “simply cannot afford to keep on living”. For months, the Federal Government promised pandemic support for disabled people, but it ultimately amounted to an exclusionary, one time cheque for $600. 

These poverty wages alongside the ongoing housing crisis and the insufficient home-care system results in the ongoing use of large-scale institutions for disabled people. Institutions for disabled people in Canada were promised to be largely closed throughout the 2000s. The limits of this promise are made evident in the ongoing use of long-term care for disabled people, the high rates of disability within prisons, and other privatized forms of congregate care. 

As of May, 2021 17, 662 disabled people have died from COVID-19 in institutions–– primarily long-term care. The deaths within these institutions were unnecessary, a direct result of the reliance on increasingly privatized large, institutional settings to care for disabled people and elders. Reports and commissions into the deaths in these institutions have laid bare the devastating conditions of institutionalization. 

Disabled people and elders died in traumatizing conditions because politicians and policymakers did not consider disabled people in emergency planning. For decades, seniors advocates, labour organizations and disability advocates have called for changes in the long-term care sector. Many of these changes, such as ending the use of four person rooms, could have saved thousands of lives across Canada. 

Decision makers and long-term care lobbyists knew that people would die in a pandemic and did little to rectify it–– it is not as if it COVID-19 was the first pandemic.  As Dr. Catherine Frazee explained in an interview with the Disability Visibility Project, that “SARS was in some ways a dress rehearsal. During that time it revealed the structural response and reactions to the people in nursing homes, and people who cannot take care of themselves.” 

These conditions have awakened non-disabled people to the oppression experienced by disabled people and elders. Sarah Jama explained to the Disability Visibility Project “The pandemic has shown in very tangible ways, how disabled people have been left behind. And I don’t know if we had anything as measurable as the deaths in the long-term care homes.”

Bill C-7

Yet, as the Canadian government explicitly demonstrated the disposability and devaluation of disabled lives, they thought it an opportune time to introduce Bill C-7. This, amidst a pandemic that has resulted in the mass debilitation or disablement of millions of primarily Black, Indigenous and people of colour, working class people, impoverished and unhoused people and disabled people.

Bill C-7 specifically identifies disabled people as the only marginalized group granted access to physician assisted suicide. Catherine Frazee explains “Some say that the suffering of a disabling medical condition is unlike other suffering, somehow more cruel than the overwhelming pain of any healthy, non-disabled person who turns to premature death by means of suicide. There is no evidence to support this.”

To understand the dangerous impacts of Bill C-7, it is imperative to understand the ways in which disability is both produced in Canada, and the material conditions of disability.

Jean Truchon was one of two applicants who fought to expand MAiD in Canada. However, his desire for receiving MAiD was because of the material conditions of institutionalization. Catherine Frazee explains “Some say that the suffering of disability defies all hope, as it did, they claim, for Jean Truchon. But the deprivations of institutional life that choked out his will to live were not an inevitable consequence of disability.” 

The conditions of institutions amidst COVID-19–were such that residents were forced to sit in their feces and urine for days, not provided appropriate food, amidst other experiences of neglect. In January 2021 Chris Gladders, a 35-year-old disabled man, died using medical assistance while in a Niagara Falls retirement home, where he lived in abject conditions. His brother directly connected institutionalization and MAiD—stating, “I believe, in my heart, that him being in that place played a big toll on his decision. I really do.”

Indigenous elders, doctors and lawyers testified against MAiD, condemning it as yet another form of cultural genocide, given that more than ⅓ of Indigenous people live with disabilities. Tyler White of the Siskia Nation explained that “Extraordinary efforts have been made in suicide prevention in our communities…the expansion of MAID sends a contradictory message to our peoples that some individuals should receive suicide prevention, while others suicide assistance.” 

Recognizing the ongoing suicide crisis for Indigenous youth, it is insulting and dangerous to add additional means of death, when communities have been tirelessly advocating for services that support life; mental health services, suicide prevention services, and resources.  

Everyday disabled people are denied autonomy; confined in long-term care facilities, prevented from accessing health care, forced to survive on poverty wages while medical needs go unmet. Disabled people are forced to wait months and years to access chronic pain specialists, essential devices, accessible housing and social supports, yet only require 90 days to access MAiD. 

The Movement Against C-7

While disabled people and organizations had been resisting physician assisted suicide for decades, it was largely in silos. Jama explains to the Disability Visibility Project that this conversation, “Isn’t new it’s existed for decades, but the difference is I think this time was that more people were able to publicly hold our elected representatives accountable. For the first time I’m seeing people make the connections between race, disability, capitalism, colonialism, and how all of these structures and systems work against anybody.”

For a long time this movement was composed primarily of religious and disability organizations, with little cross-movement solidarity. This time, it was different. An Open Letter by “member organizations and allies of the disability rights community, ask the Government of Canada to stop and rethink the radical and highly divisive changes proposed for Canada’s medical assistance in dying regime in Bill C-7”, signed by more than 147 diverse organizations ranging from the No Pride in Policing Coalition, Black Lives Matter-Toronto, Inclusion Canada, The National Association of Women in Law, amongst others.

Resistance to Bill C-7 took various forms, and shifted national conversation. Sarah Jama explains in an interview with the Disability Visibility Project how advocacy became more effective as a result of moving past traditional understandings of advocacy, which center working within the system. These systems, she explains “have worked traditionally for white people in the past, but have never worked for black and racialized people. And we don’t rely on those systems and structures in the same way. So I’m not all about spending hours and hours in large table meetings if we’re not going to go and do”.  She explains the conversation today has shifted to “what does strategy look like? How can we actually collaborate? And combine all of these practices from what has worked across movements. And I’m excited to see what will come out of that.”

The shift of progressive politics supporting disabled people fighting deinstitutionalization cannot be understated. This shift is demonstrated in the votes of the New Democratic Party, the most left-leaning party in Canada. The first vote on Bill C-7 the entire party voted for the amendments to the Bill. However, in the final votes they switched their votes and unanimously voted against the legislation. While the Bill was ultimately made law, the change in progressive politics was a success along the way.

Bill C-7 received Royal Assent and is now the law, but the fight has not ended.

Fighting Forward

Reflecting on the challenges and opportunities moving forward, I asked what Kelly Fritsch, Sarah Jama and Catherine Frazee were excited for. 

KF:  I think that the ways in which the prison abolition movement is intersecting with disability Justice organizing is phenomenal like that is completely unexpected and that’s the kind of movement work that I think is going to completely shift what people imagine is possible in the Canadian context and beyond. The Disability Justice Network of Ontario is exactly what disabled people in Canada needed and the work that they’ve been doing in coalition with others has just been still hopeful, visionary, [and] so encouraging. 

CF: As disabled people are able to celebrate and embrace their disabled identity, this is a head start. But we have to remember, we can never go back, we must always keep moving together. 

SJ: “I am excited to move toward a world where our worth does not have to be tied to our ability to produce. I am excited to use this conversation around disability justice to leverage larger conversations about what building a world that doesn’t dispose of people will look like. Because I think that’s revolutionary and I think disability justice gives people the language to be revolutionary in their politic and to imagine a world where all of us fit. Because if you can build a world that fits disabled people who are literally discarded because of their inability to produce work, then you’re building a world that will fit everybody.”

About

Megan Linton is a disabled deinstitutionalization researcher, writer and advocate based in Unceded Algonquin Territory. Megan’s research and advocacy focuses on the ongoing use of institutions for disabled people in Canada, and the possibilities of abolition. Megan has written for Data Libre, Winnipeg Police Cause Harm, Canadian Dimension and the CBC. Find here on Twitter: @PinkCaneRedLip

 

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