Neo-Eugenics in Canada: Relational Autonomy, Rights, and Torture in Track-2 Euthanasia

Terry-Lee MARTTINEN

 

Abstract: The expansion of euthanasia, or Track 2 Medical Assistance in Dying (MAiD) to non-terminal physically disabled people introduced in 2021 in Canada is recognized by many marginalized disabled individuals and allies as a modern form of eugenics. In September 2024, a coalition of disability organizations and two individuals harmed by creeping euthanasia policy temporarily stayed for mental illness until 2027 launched a Charter challenge against Track 2 MAiD. This paper considers the concepts of relational autonomy and rights to better understand complex issues in euthanasia debates from feminist and disability perspectives. Countering medical discourses sentimentalizing euthanasia limitedly as a rational choice supporting individual autonomy marked by access to medical treatment, it argues relational autonomy taking into account social dimensions supports disabled people’s right to health and life. As an essential component of living in dignity, this includes freedom from cruel and unusual punishment amounting to torture recognized in sterilization abuses targeting disabled, Indigenous, Roma, and other socially vulnerable women globally. Informed by personal experience of feminized poverty, chronic illness, and eugenic sterilization, I maintain prescribing ”drug cocktails” like surgical sterilization rebranded as a treatment for disabilities undermines disabled people with intersecting racial, class, religious, and sexual identities collective autonomy and existence. I offer insights on controversies over drugs promoted as ensuring a dignified death compounding gendered medical trauma and injustice supporting repealing Track 2 MAiD for non-terminally ill disabled people.

Keywords: colonialism, euthanasia, neo-eugenics, disability, sterilization, relational autonomy, feminism

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Introduction

In 2021, the Dying with Dignity Canada (DWDC) lobby was successful in its decades-long effort to decriminalize assisted suicide in Senate hearings in Canada. Dedicated organizing through public outreach to amend the federal Criminal Code of Canada was spurred in the early 1990s by the case of Sue Rodriguez, who was terminally ill from amyotrophic lateral sclerosis (ALS). The right-to-die activist argued in the Supreme Court of Canada that prohibiting assisted suicide was constitutionally invalid. In September 1993, the Supreme Court upheld section 241(b) of the criminal code making aiding and abetting suicide punishable with up to fourteen years of imprisonment. The judge presiding over the case determined that “given the concerns about potential abuse and great difficulty creating appropriate safeguards, the blanket prohibition on assisted suicide is not arbitrary or unfair and should therefore be upheld”[1]. A year later, Sue Rodriguez committed suicide assisted by an unidentified physician witnessed by National Democratic Party (NDP) Member of Parliament, Svend Robinson, a leading advocate in the right-to-die movement with impunity[2], Coming out as gay in 1988 and against ”backdoor euthanasia”, Robinson endorsed legalizing assisted suicide for men with AIDS routinely taking their own life or subversively aided by physicians

In the Carter ruling in a subsequent challenge in 2011, the Supreme Court advocated that outlawing assisted suicide violates Charter rights protecting the life, liberty and security of the person. However, it wasn’t until 2016 that Bill C-14 legalizing medical assistance in dying (MAiD) was tabled by a federal special joint committee under Canada’s Liberal leadership, which was criticized by the CEO of DWDC as discriminating against people with dementia, mental illness and competent minors. On June 8, 2016, the Senate voted to amend Bill C-14 to remove the clause “reasonably foreseeable death” to accommodate advanced directives for individuals diagnosed with dementia, for example[3]. In spring 2021, with disabled people and disability organizations marginalized in consultations, Bill C-7 was expanded to include disabled individuals not imminently dying in a two-track system. Track 2 MAiD was authorized for those not at the end of life with a 90-day waiting period versus no time limit from when a request was signed. A proposed amendment extended to people with a sole diagnosis of mental illness was delayed until 2027. DWDC lobbyists continue pressing for expansion, including to minors twelve years old and over with terminal illnesses in adaptive medical creep[4].

The Canadian Medical Association Journal publishing the cost benefits of MAiD together with enduring sterilization of Indigenous and other marginalized women in a national Senate probe reveals that gendered ableism, racism, and eugenics are structured in the Canadian medical system under settler-colonialism[5]. My article from critical feminist and disability perspectives recognizes relational autonomy taking into account social dimensions can support disabled women’s right to health and life. As an essential component of the underlying right to dignity, this includes freedom from cruel and unusual punishment amounting to torture recognized by international rights bodies for ongoing eugenic sterilization practices targeting racialized and disabled women globally[6]. I argue prescribing lethal drugs like coercive and forced sterilization applied as a treatment for economic crises and social problems linked to settler colonialism undermines disabled people with intersecting gender, racial, class, religious, and sexual identities collective autonomy and existence[7]. Disabled women, not at the end of life living with multi-system diseases such as Myalgic Encephalomyelitis (ME) and Long-Covid (LC) disproportionately affecting racialized women, are at increased risk due to institutional gendered racism and a lack of dedicated research and medical care. A relational approach to rights and autonomy justifies repealing Track 2 MAiD and supporting the health of people living with chronic illnesses whose access to medical treatment is obstructed by socio-political factors. In September 2024, a coalition of disability rights groups and two individuals filed a lawsuit in the Supreme Court of Canada claiming that Track 2 MAiD violates the Charter rights of disabled people. An intersectional approach to complex legal issues is required to achieve gender justice.

 

Hidden Minorites and Colonialism in Canada

According to health and human rights literature, Indigenous and other minoritized racial groups such as Romani refugees are exposed to structural racism in Canada, which is a factor in fostering exclusion and intergenerational economic and health disparities[8]. Disability and poverty are recognized as over-represented by Indigenous people, women, and LGBTIQ2S people signifying that individuals with multiple marginalized identities are at increased risk of negative health effects associated with chronic oppression. Psychologists describe “oppression as the domination and subordination of a group by restricting access to social, economic, and political resources,” which can be traumatizing over the long term[9]. There is no research to date capturing disability rates among Canada’s hidden Romani diaspora comprising 110,000 individuals historically and currently exposed to racism, eugenics, and genocide in Europe, or the Indigenous-Sámi from northern Fennoscandia. Along with the existence of Romani Canadians, their history, cultural and social diversity, and contributions to society, “are unknown or misunderstood” raising the alarm on the expansion of MAiD policy without consultations with hidden marginalized disabled people[10].

Contributing to the Sámi’s erasure in research and policy to support social and health equity, there are no official or unofficial statistics on the number of Sámi descendants from Sweden, Norway, Finland, and the Kola Peninsula in Russia living in Canada or record of their intergenerational experiences of transcolonialism. This is a critical concern issue since settler-colonialism is recognized as systemically undermining the sexual and reproductive rights of Indigenous women and subordinating women in violent capitalist relations[11]. Sámi scholar Rauna Kuokkanen affilated with Lapland University and the University of Toronto in Restructuring Relations: Indigenous Self-Determination, Governance, and Gender highlight that destroying women who reproduce Indigenous nations facilitates theft and exploitation of Indigenous lands and territories[12]. Native studies scholars Eve Tuck and Wayne Yang confirm as a structured process where settlers move into Indigenous lands and demand sovereignty as part of setting up residence, Indigenous lands and bodies are viewed as property and resources. They argue that settler colonialism “represents profound epistemic, ontological, cosmological violence”[13]. Kuokkanen discerns that male-centric Indigenous systems of self-government promote gender violence by ignoring or minimizing the experiences of Indigenous women. In Canada, First Nations, Métis, and Inuit women, as well as women with intersecting oppressions relating to poverty, race and disability, continue to be targeted in colonial sterilization practices compounding historical individual and shared traumas, which is now a criminal offence with the passage of Bill S-250 in Senate in October 2024[14].

Research by the Canadian Romani Alliance published in 2024 out of Harvard University documenting the experience of Romani people living in the Greater Toronto area in Ontario, outlines that the Romani migrating as early as the 1860s from Europe continue to “face hate crimes, racial profiling, and discrimination in accessing education, health care, housing, and proof of legal identity”[15]. The research emphasizes that upon learning the identity of Romani people healthcare professionals have demonstrated “prejudicial attitudes when they revealed that Hungary or the Czech Republic were their countries of origin, both countries widely associated in recent years with Roma refugee influx to Canada”[16]. As a collective, they are subjected to harmful stereotypes and prejudice extending to government systems “that conceive, weaponize, amplify, and reinforce stereotypes and individual beliefs”[17]. Sámi people immigrated first in the early 1930s with Canadian government support to the North West Territory’s Mackenzie Delta Region from northern Norway, but may have arrived earlier from Nordic countries taking on the national identity of their country of origin[18]. Sámi-American scholar Ellen Jensen whose research has been instrumental in visibilizing the Sámi diaspora in the United States conservatively estimates 30,000 to 60,000 people with Sámi heritage live in North America[19]. The numbers may be higher due to the suppression of Indigenous identity attributed to missionization and scientific racism in northern Europe, immigration processes, and other factors.

At the moment, like disability statistics, there is no research on the experiences of racism and health among the Sámi in Canada. However, my research captures that northern Sámi in Sweden has been objectified in evolving race and eugenic studies and practices biased toward women because of their reproductive capacity for over a century, which created intergenerational traumas. Moreover, Sámi religious minority women in the Laestadian movement in Finnmark, Norway were exposed to intergenerational lateral sexual violence with far-reaching community impacts[20]. Jensen points out that a “tendency toward silence on the part of victim/survivors can be attributed to several factors, including fear of collective racialized judgement, fear of not being believed, and a tendency on the part of minorities to ‘protect their own’”[21]. Upon learning about the official investigative findings of sexual abuse with 89 victims two-thirds being Sámi in Norway in 2018, a young Laestadian woman sexually abused by a relative in the United States committed suicide. Individual and collective impacts of oppression, violence, and trauma among Sámi and Laestadian women in Canada remain to be understood. My PhD research addresses the topic of transnational eugenics and gender-based violence in relation to feminized poverty and disability in the Finnish Laestadian context from a lived perspective undertaken as part of the Sámi “Coming Home” research project centring on the legacy and healing from aggressive Swedish colonialism at Uppsala University.

 

Transnational Colonial Eugenics and Discrimination

Collaborative community-based research involving the Romani in Europe, emphasizes that women experiencing gender-based discrimination and violence, including forced sterilization compounds “the effects of ethnic-and class-based disadvantages” like Indigenous women[22]. In 2021, the Commissioner of the European Court of Human Rights, called on the Slovakian Prime Minister to provide redress to victims of forced sterilizations. Like Indigenous and other affected women in Canada, however, “many women feel ashamed to talk about what happened to them, and others never understood why they are unable to get pregnant”[23]. My published research on Swedish eugenics identifies that both Sámi and Finnish Laestadians, historically racialized in a binary system in Nordic countries, internalized eugenic stigmatization as a result of being exploited in genetic theories of inheritance in the 20^th century that rationalized forced sterilization until the 1970s in Sweden[24], Similar to Roma and Sámi women in Canada, Finnish Laestadian immigrants from Nordic countries disadvantaged based on intersecting religious, gender, and class identities are a hidden group vulnerable to new eugenic practices such as MAiD and traumas in Canada.

Sámi and Finnish Laestadians counting myself (although I am secularized), have internalized Swedish state violence making us vulnerable to colonial trauma in Canada. I disclosed first publically to Métis Senator Yvonne Boyer who led Canadian Senate hearings into contemporary sterilization abuses initiated in 2019 that in 1986 I was coercively sterilized during an abortion procedure, which has compounded traumas from ingroup lateral violence[25]. This entails “assaults on worth” as a manifestation of collective stigmatization as illicit and deviant undermining dignity, self-esteem, sense of self, and worth” recognized among Romani people[26]. Shared experiences of Western colonialism and nationalism rooted in white supremacy reproducing social and economic disparities continue to infringe on minoritized groups from realizing personal autonomy and human rights underpinned by an inherent right to dignity. As a Finnish-Laestadian settler living in northern Ontario, I experience cross-cultural limits on dignity, autonomy, and health living with chronic illness deprived of restitution for religious and secular eugenic harms, which restricts my capacity to lead a self-determined life.

Notable, raising concerns about creeping MAiD policy, international traditionalist Laestadians still governed by lay pastors in Gällivare, Sweden, psychiatric disability is weaponized to Other ingroup women failing to conform to 19^th-century Swedish colonial norms imposed on northern Sámi. Indigenous people in Sweden like Canada customarily do not recognize disability in their languages. Dedicated disability research involving a Sámi associate professor of Social work at Umeå University, identifies that human differences are considered natural and neutral with individuals contributing each in their own way to communal life. Collaborating researchers argue that disability as a concept idealizing perfection grounded in Western knowledge systems is too readily applied. Furthermore, promotes stigma and restricts the rights and sovereignty of Indigenous people in international communities also recognized in my analysis of Swedish eugenics[27]. Line Melbøe affiliated with the Arctic University of Norway, in a study based on interviews with thirty-one disabled Sámi participants and families in a dominant Laestadian area in Finnmark, Norway, found that determining appropriate treatment depends on a person’s understanding of illness.

Her research in the local Sámi-Laestadian context explains that in Sami traditional medicine, healing by being ”read on” is a common way to cure illness, and for Sami people this means they have received healing from a traditional healer for a somatic illness or other kinds of torment, or the prevention of illness or bad happenings. The origin of the term ”to read” is said to have come from the belief that traditional healers were supposed to have secret written formulas they used in the healing[28].

The research confirms that Sámi-Laestadians in Norway do not openly speak about illness or impairments like sexual violence. It identifies that perceptions of illness and taboo are culturally conditioned. In traditional Sámi culture, illness is understood to be dependent on the relationship between the individual and the community, and is interpreted as disharmony and lack of balance with the world in which one lives”[29]. According to my body of research, the colonial legacy of gendered racism and eugenics in Northern Europe nurtured negative views of neurodivergence[30]. Translated texts by the Sámi and Swedish founder Lars Levi Laestadius (1800-1861) anchored in 19^th-century race psychology read for ‘spiritual healing’ at church services, for example, conflate Sámi and female sexual identity with Western medical concepts of impairment, ”madness”, and deviance. Since illness is a stigmatized and taboo subject and Laestadians are culturally isolated there is no data on psychiatric or physical disabilities among the religious minorities in Canada. Generally speaking, women coerced into birthing large families are at high risk of health complications associated with multiple births and poverty. Devout women are discouraged from higher education and are largely economically dependent on men fostering vulnerability to male violence in North America.

The European Disability Forum and ERGO Network capture that in the European Union over 15 percent of Roma people have a disability due to a health inequality gap. A “briefing highlights a comparatively high risk of intersectional and multiple discrimination for Roma with disabilities, with the disability marginalisation adding to the systemic racial discrimination and antigypsyism that keeps them at the margins of society”[31]. Crucially, 82 percent of disabled Roma are deemed at risk of poverty, which is higher among disabled people with complex support needs. Fueling poverty, 81 percent of disabled people dropped out of school. A mere 2 percent receive tertiary education and 55 percent experience housing deprivation demonstrating that disabled Roma have been excluded from realizing basic rights through policy, such as accessing learning opportunities and services that promote social and economic justice[i]. An annual conference at Harvard University on April 6, 2023 “focused on how Roma people in Europe—like Blacks and Hispanics in the U. S.—experience considerably worse health outcomes than ethnic majorities”[32]. The François-Xavier Bagnoud (FXB) Center for Health and Human Rights found that anti-Roma racism is behind significant gaps in health equality such as cognitive impairment and heart disease.

Like the Sámi and Finnish Laestadians in the 20^th century in Europe, Roma people many of whom identify as Christian have been historically exposed to scientific racism. At the conference historian of race/racism and eugenics Marius Turda, “described the history of eugenics in the U.K., U.S., and Europe that labeled ethnic minorities, including the Roma, as inferior. Such labeling led to sterilizations and murder of Roma people at the hands of the Nazis during World War II”[33]. The United Nations has warned that violence against marginalized women and girls, economic dependency, and discrimination exacerbated by the coronavirus pandemic are major barriers to achieving autonomy and full citizenship across the ages[34]. Recognition of imposed limits on rights and self-determination taking into account collective oppression and trauma compounded for disabled people socially neglected and who died at higher rates in pandemic responses, therefore, must be considered in policy processes[35]. This includes the United Kingdom (UK) since in the fall of 2024 a Bill to legalize medically assisted suicide was introduced in the UK Parliament expanding the delivery of euthanasia as medical treatment in Europe. The rights of disabled people are a critical concern issue in the UK since among issues anti-immigration Conservative political leaders propose leaving the European Convention on Human Rights, which helps guard the rights of disabled people together with the Convention on the Rights of Persons with Disabilities.

 

Track 2 MAiD,  Rights, and Disability

Given the legacy of settler-colonialism upholding feminized poverty, discrimination, and embodied harms against racialized immigrants and disabled people in Canada through shared histories of discrimination reproducing inequalities exposes the limitations of Western ideals of individual autonomy in Track-2 MAiD[36]. Law professor Janine Benedet at the University of British Columbia explains that “individual, liberal analysis…presume we are all  equal agents making decisions about our lives, especially when the choice in question can be framed as personal, about one’s own body, and not harming anyone else”[37], Both an official Truth and Reconciliation (TRC) investigation from 2008 to 2015, and the more recent probe into ongoing eugenic sterilization captured in The Scars that We Carry: Forced and Coerced Sterilization of Persons in Canada – Part II, otherwise reveal that racism, inequality, and discrimination are legacies of Canadian colonial systems. Isabel Grant specializing in criminal law at Canadian Senate hearings on MAiD testified that de-criminalizing assisted suicide is a rights disaster in the making. She noted in Disability Studies Journal that systematic bias toward people with disabilities or “ableism is so deeply embedded in our social, legal and political structures that we don’t see it as ableism but rather as a form of common sense. The Supreme Court of Canada has described disability discrimination as premised on a distorted view that disability is a flaw to be fixed or eradicated”[38]. Making headlines in national news the Charter challenge by the disability rights coalition “argues that allowing people with disabilities to die violates the Charter protections available to all other Canadians and may induce them to end their lives prematurely, based solely upon their disability”[39]. Disability is assumed to be an undesirable trait, which reclaims discredited eugenic ideals of human perfection associated with 20^th-century fascism.

Christopher Lyon affiliated with the University of York in England ailing father who experienced homelessness was euthanized without adequate oversight or family consultation in Canada. He explains “Canada’s MAiD system is criticized as the most permissive or least safeguarded in the world”[40]. Considering MAiD policy through a healthcare serial killing lens, Lyon argues that “Canada has a decades-long pre-MAiD history of unprosecuted involvement in homicide and suicide assistance by supporters of assisted dying and euthanasia and their organizations.”[41] The interdisciplinary social scientist suggests that Track 2 MAiD for people who are not dying may cloud the medical rationale for approvals, and repealing Track 2 and restructuring to decentralize the decision-making power of physicians are warranted. Feminist research clarifies that women, especially older and Indigenous women, disproportionately experience chronic illness, poverty, male violence, and medical ableism. Indigenous women are at heightened risk of a cycle of violence and death, which is why Indigenous communities rejected MAiD in Parliamentary inquiries[42]. As I demonstrate, women from hidden marginalized groups like the Romani and religious minorities are also exposed to a cycle of violence, trauma, and negative health effects associated with poverty the former compounded by enduring racism.

Mounting criticism reveals relational rights and autonomy need to be considered in the restructuring of euthanasia policy in Canada rolled out during the COVID-19 pandemic. Significant, controversial privatization of healthcare and social welfare in the province of Ontario by the Conservative government, for example, continues to nurture inequalities and risks to health and life among disabled people already amplified by exclusionary political responses to COVID. Austerity measures are limiting access to life-sustaining healthcare and income security necessary to cover escalating rental, food, and other costs. The ODSP Action Coalition’s Chair, Trevor Manson, in a news interview “to save money, he says, many [Ontario Disability Support Program or] ODSP clients buy coffee to suppress their appetites (and, by extension, their grocery bills). Most of the clients Manson knows eat just one meal a day”[43]. My timeline on the former Twitter is filled with mutual aid fundraising requests by disabled people to cover basic needs such as rent, food, medications, and transportation to medical appointments. Not captured in statistics on MAiD, economically marginalized disabled individuals are disclosing on social media that they have applied to be euthanized.

In traditional media, Rose Finlay living with severe physical disabilities, “says it’s easier to access MAID than the support services she needs” as an inditement of critical issues[44]. Others with non-life threatening illnesses such as chemical sensitivities overwhelmed by a lack of housing and other supports have already been euthanized under the program. As a warning to the UK and other countries considering implementing controversial end-of-life policies believing it would be chosen without coercion and restricted to people with severe illness, the executive vice-president of Inclusion Canada involved in the Charter challenge verifies “there has been an alarming trend where people with disabilities are seeking assisted death due to social deprivation, poverty and a lack of essential supports.”[45] Actress and disability activist Liz Carr from the UK collaborating with disability organizations in Canada, in Better Off Dead? broadcasted on BBC One in May 2024, emphasizes that the ever-expanding MAiD is frightening for disabled people[46]. She echoes concerns that MAiD is being chosen for reasons other than health. Among the issues, disabled people have been excluded in consultations on decriminalizing medically assisted dying like in Canada. Romani people, including Roma from continental Europe exposed to genocide by the Nazis less than a century ago, are also excluded. Importantly, the Healing Justice Foundation’s Death By Welfare Project in the UK recognizes that diverse disabled people continue to be systemically exposed to state violence and unnatural death through institutionalized eugenics in the social welfare system[47]. Parallel disability rights and justice issues are at stake in the UK and Canada.

      According to the United Nations, basic to international and national human rights is the right to the dignity of the human person and freedom from cruel and unusual punishment whether by forced incarceration of disabled people in institutions, sterilization, or euthanasia[48]. The right to dignity in life is predicated on “the universality, indivisibility, interdependence and interrelatedness of all human rights and fundamental freedoms and the need for persons with disabilities to be guaranteed their full enjoyment without discrimination realizing the interdependent rights endorsing equality protected by international disability rights instruments”[49]. The Convention on the Rights of Persons with Disabilities stipulates that disability as an evolving concept “results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others”[50]. Impairment does not lie within biology, but rather is a product of cultural and social obstacles that limit a person’s experience of agency and decision-making necessary to achieve autonomy. Sociologists recognize that marginalized “people define “rights” and the “violations” and “achievements” thereof on the ground…they establish what they mean by “rights,” what they do with rights, and what such efforts mean to them as they are embedded in particular relational constellations”[51], In short, disabled people define the value of rights and what they mean, which is at odds with medical interpretations.

A medical model of disability long contested by international disability organizations and disabled and consumer/survivor and mad activists upholds euthanasia as a treatment and access to care issue in Canada. It suppresses established multilayered structural discrimination and cherry-picks from the spectrum of human rights. From my perspective, as a person disabled after a viral illness in the late 1990s, and subsequently, developing cancer requiring specialist care in Toronto, Ontario, it is contradictory to frame death as a freely chosen and promoting dignity for disabled people not at the end of life given established medical and social disparities. Legally to qualify for Track 2 MAiD, a person must have a grievous and irremediable medical condition causing unbearable suffering. However, feminist analysis of MAiD recognizes that singling out disabled people “effectively depoliticizes disability suffering, stripping away the layers of race, class, sex, indigeneity, and gender conformity that are crucial to an equality analysis”[52]. This is consistent with my lived experience of chronic and acute illness on the ODSP benefit system, which is sidelined by MAiD proponents and the government. A large body of research supports that living below the poverty level on provincial benefits which is an overt class marker contributes to a cycle of gender violence, trauma, and disability in part by forcing women into dependency on families and male partners.

Compounding social suffering dismissed by DWDC lobbyists, a public review of the Accessibility for Ontarians with Disabilities Act in 2019 determined that “limited ODSP funding impacts not only individuals, but their families. Families with one working spouse and the other reliant on ODSP are often still living below the poverty line… one attendee reports that she cannot afford to house her three children. Instead, she can only afford to live with two of them”[53]. The ODSP Action Coalition states claimants are isolated and deprived of basic needs explained above in an escalating crisis effectually impeding human agency and choice on the group level. Nonetheless, the Canadian Parliament endorses individual case assessments for physical and mental illness in Track 2 MAiD instead of group-based assessments with recommendations centring on the needs and experiences of minoritized people in a justice approach marked by leadership of those most impacted. Disabled policy analyst Gabriel Peters living in Western Canada explains that medical professionals in a “disability paradox” conflate disability with suffering amplified by systemic injustice and ableism, which devalues disabled people’s lives and voices[54]. She explains this ultimately makes them feel like a burden on society. Importantly, MAiD policy and law uphold negative rights that restrict state interference in the lives of citizens, however, disabled people are invested in second and third-generation rights that promote economic and social capacity to exercise rights and embody relationality “as a core proposition for governing society”[55]. In other words, the conditions that promote autonomous choice.

Contrary to the views of lobbyists promoting euthanasia during a politically polarizing global health crisis recognized as causing mass disablement and death, freedom from structured state violence is a prerequisite for control over our being. I reject framing MAiD narrowly as an access-to-treatment issue based on medical views that disability causes so-called irredeemable suffering with politicized messaging that disabled people are a financial burden. Early in Nazi-occupied Germany fascist ideas of white superiority inextricably linked to health status justified physicians to forcibly sterilize and ‘mercy kill’ disabled people dehumanized as an economic burden before Hitler launched his mass extermination campaign[56]. The measures “drawing on eugenics and Social Darwinism, they argued that the burden on society by having to care for these individuals was too high and their human status too low”[57]. A cause for alarm, we see similar attitudes in Canadian responses to the pandemic with the exclusion of disabled people from life-saving care at the height of the pandemic and the federal government’s failure to universally provide life-sustaining relief benefits. Also, the subsequent Canada Disability Benefit (DERB) was not only delayed until 2025 but is a fraction of the amount recommended by disability organizations. In consultations for Bill C-22 introducing DERB, disability advocates suggested the benefit reflect the cost of living, but the Liberal government allocated a mere $200 top-up to an existing federal disability benefit lifting a small fraction of working-age people out of extreme poverty. Among criticisms, the benefit is tied to household income narrowing the scope of individuals who qualify.

Erased in disability benefit and MAiD debates diverse targeted groups by eugenicists in the 20^th century are living marginally accumulating new traumas in Canada. As a reminder Turda explains, “the message of improving the race through eugenics was universal, cutting across geographies, cultures and religions. We should therefore not treat eugenics as a historical anomaly”[58]. The structural and adapting role of eugenic ideology in colonial systems must be centred particularly in MAiD debates in Canada and other countries. Recommended by marginalized disabled people in a class distinction aside from repealing Track 2 MAiD are increasing provincial and federal disability benefits based on anti-poverty indicators and addressing the lack of accessible affordable housing. Also, rolling back the privatization of healthcare with anti-racism safeguards recommended by eugenically sterilized Indigenous women. From a sterilization survivor’s perspective, anti-eugenic education is a defence against sexist and racist abuses in healthcare. This could benefit hidden Sámi, Laestadian, and Roma women through changes in the nature and delivery of services.

 

Feminism and Relational Autonomy

In an assessment of people accessing MAID in 2022, there was a 30 percent increase in the use of MAiD with 13,241 MAiD deaths in total. It is estimated that over 99 percent of MAiD deaths were by euthanasia, rather than assisted suicide where users orally self-administer a lethal drug cocktail. Over half or 59 percent of those who accessed Track 2 were women[59]. Higher incidence of multisystem illnesses such as ME and LC causing similar debilitating symptoms, as well as autoimmune illnesses in addition to experiences of systematic violence and economic inequities demand that analysts and policymakers reflect on relational autonomy when it comes to MAiD.[60] Unlike individualist liberal models, feminist approaches take into account oppression and gender violence in the social development or exercise of the capacity for autonomy. In my experience as a sterilization survivor living with ME, personal autonomy is a political resource that is routinely unjustly denied to women in medicine. For me, this continues to be the case since I still manage ME with limited medical support after several misdiagnoses with problems from prescribed drugs such as seizures, rashes, swelling, and breathing difficulties complicated by other chronic immune conditions. Research on LC is shedding light on post-viral inflammatory, neurological, respiratory, and skeletal muscle symptoms in ME, which raises concerns about offering MAiD to women affected by post-viral illness with limited specialist care and treatments to date.

More generally, gendered socialization processes disadvantage women[61]. This is the case in paternalistic and patriarchal Laestadian culture where devout women are relegated to the domestic sphere and duty-bound to birth multiple children at the expense of higher education and skilled employment. For disabled religious minority women like myself, choice obstructed by ableism, racism, and sexism in medicine is compounded by historical ruman rights violations in Laestadianism. However, a libertarian conception of choice erasing social and health inequities built into MAiD policy assumes that autonomy is best promoted by maximizing choice in healthcare and minimizing limitations on an individual’s freedom to choose services. In principle, the idea of maximal choice on the ‘outer spectrum’ of  liberalism represents the main threats to autonomy as paternalistic restrictions on an individual’s freedom of choice by other people or the state. This conception of autonomy lends support to a noninterventionist, anti-regulatory view of state responsibility, which views state assistance in the form of social welfare, health care provision, support for education, and redistributive taxation policies as constraints on individual freedom. It is also associated with the rhetoric of consumer sovereignty and self-regulating markets. It therefore provides a philosophical justification for an increasing tendency in neoliberal economies to individualize risk and responsibility[62].

Catriona Mackenzie at Macquarie University explains that a de-emphasis on social responsibilities ensures that the burdens of risk are borne disproportionately by marginalized individuals or social groups rather than government bodies masking social injustice. Relational autonomy otherwise considers self-determination as a distinct dimension of autonomy, which involves realizing the structural conditions of freedom and opportunity that enhance a person’s ability to live sovereign lives[63].

In the end-of-life context, the notion of relational autonomy focused on collective dimensions of choice and agency is often set against individual models, which focus on self-interest ignoring social context. Authors of a systematic review of argument-based ethics literature identify that “the importance of particular relationships, such as family, friends, and communities, was commonly neglected by individualistic theories [of autonomey]”[64]. Furthermore, confirms that “a Western perspective considers it to be a contractual relationship, one that can be thought of as a consumer-rights view of the patient. From this stance, the intrinsic asymmetry of the doctor-patient relationship is overlooked”[65]. We this playing out in MAiD with disregard for marginalized disabled voices in political processes and families in MAiD assessments, as well as contemporary sterilization practices where physicians continue to ‘power over’ marginalized women causing physical harm and trauma. Among the challenges for ongoing discussion on relational autonomy are how to protect disabled people as a minoritized group against abuses and unwarranted interventions of practitioners and family members, as well as confidentiality in end-of-life decisions. In the mental health context where gendered eugenic practices are intrinsic to international psychiatry stigma compounds historical and current violence recognized as torture (eg. euthanasia, sterilization, lobotomy, and solitary confinement) of already marginalized consumer/survivor/service-user/mad-identifying people as a collective.

A model of relational autonomy for end-of-life decisions is not definitively taken up in these pages. Rather I echo calls for continued deliberation, especially from non-Western perspectives that consider both relational and individual dimensions of autonomy focused on justice. In an analysis of gender justice over structural issues realizing Indigenous self-determination and sovereignty as a vision for the present and future, Kuokkanen clarifies that Indigenous women in Canada are against copying Western models. Eurocentric approaches are invalid since gendered oppression and discrimination are naturalized within colonial structures[66]. Notably, Indigenous self-determination is a collective human right. She clarifies that self-determination involving reclaiming practical roles and women’s authority is based on political and legal relations in interaction with states to develop Indigenous cultural, political, and social ways of being in the world. She argues that self-determination is a pre-condition for the survival of Indigenous identities and communities tied to land and territories[67]. Undermined in unethical sterilization practices and MAiD recognized as culturally bound by First Nations in Canada, for example, destroying women and their reproductive capacity facilitates the ongoing colonization and exploitation of Indigenous lands. A two-year engagement process with First Nations, Métis, and Inuit in Canada found that “the historic and ongoing harms of colonialism, and the intergenerational trauma experienced by individuals and communities, have resulted in health inequities and barriers to accessing health services for Indigenous communities across Canada”[68]. Inequities are compounded by other forms of intersectional discrimination, namely sexism, ableism, transphobia, and homophobia. Among the recommendations are the elimination of systemic racism in health care and the need to engage Indigenous communities more broadly about MAID.

The Sámi scholar emphasizes that Indigenous women carry clans that grow nations[69]. Consequently, gender-based violence entrenched in the Canadian healthcare system inevitably destroys Indigenous nations, which is supported by historical research on eugenics in Canada. She recommends observing collective and individual rights to prevent gender violence in Canada and Nordic countries upheld by masculine Western national and Indigenous governance systems. Kuokkanen recognizes autonomy involves cultural integrity that encompasses relationships to land, spirituality, and kinship as key examples. Consistent with mainstream feminism, Indigenous feminism recognizes relational autonomy as a capacity fostered, or else undermined through relationships that nurture environmental conditions that support a person to make informed, uncoerced decisions[70]. Self-determination as a value manifests the cultural integrity of Indigenous lands and individual integrity recognized as freedom from bodily harm and violence from a Sámi perspective. Interrelated values include autonomy, equality,  dignity, security, bodily integrity, and material resources[71]. What needs to be considered further is how evolving frameworks can protect the bodily autonomy of Indigenous and non-Indigenous disabled women and girls, reliant on federal and provincial medical and social welfare systems to protect their dignity as living subjects. It is essential to take into account structures and imbalances of power that inhibit the self-determination of disabled people informed by lived experience, especially those facing intersecting systems of oppression.

Mainstream feminist scholarship defends that the concept of self-determination may overcome current political and theoretical challenges in the mobilization of women’s rights creating conflicts in other contexts such as MAiD[72]. A critical concern issue when it comes to MAiD is that narrow individualist pro-choice arguments harnessing the feminist slogan ”My Body My Choice” have been appropriated from activism on abortion rights, which was also misused by COVID-19 anti-vaccine and anti-mask conspiracy proponents putting vulnerable disabled people at risk of premature death. The World Health Organization reports that between 1 January 2020 and 31 December 2021, approximately 14.9 million people died directly or indirectly from COVID-19 infection. People with a “learning disability were approximately 4–5 times more likely to be admitted to hospital for COVID-19, and 7–8 times more likely to die from causes involving COVID-19 than those without a learning disability”[73]. The authors of “My Body My Choice: The Hostile Appropriation of Feminist Cultural Memory in American Anti-Vaccine Movements,” argue that the above slogan derived from the Women’s Liberation Movement frames individual bodily autonomy as a civic right. It is “‘sufficiently broad in interpretative scope, inclusivity, flexibility, and cultural resonance’ to function as a so-called master frame, which is broader in scope than most social movement claims and as such has ‘utility for other movements’”[74]. As I was coercively sterilized during an abortion procedure when I was twenty-two years old, I recognize a more nuanced cross-cultural dialogue on autonomy encompassing the false equivalency of the right to dignity in the death of adults with the right to abort an embryo considered a non-person is necessary.

 

Euthanasia, Cruel and Unusual Punishment, and Torture

Buried in promotional material DWDC once preoblematically promoted the medicalized killing of stigmatized gay men with AIDS viewed as a drain on national resources[75]. Today, affected people live long lives with new treatments. The institutionalization of assisted suicide and euthanasia as treatment raises the issue of using drug cocktails or nitrogen gas to kill individuals like incarcerated individuals on ”death row” and disabled people via commercialized assisted death. The advocacy group The Last Resort marketing a suicide gassing pod is embroiled in controversy with co-president Florian Willet among those held in pretrial detention over the September 23, 2024 death of an American woman in Switzerland. Raising serious human rights issues for pro-choice death proponents endorsing ”gassing” people, the United Nations “expressed alarm over the imminent execution of Kenneth Eugene Smith [on death row in prison] in the United States by nitrogen hypoxia – an untested method of execution which may subject him to cruel, inhuman or degrading treatment or even torture”[76]. Capital punishment by nitrogen hypoxia execution may cause pain and suffering that violate the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment and related rights instruments protecting detainees from medical or scientific experimentation detrimental to health.

The Last Resort executives unapproved to deliver assisted dying facing criminal proceedings for “inducing and aiding and abetting suicide” are unable to provide evidence that the gas used does not cause pain and suffering[77]. Raising the alarm in the capital punishment case an eye-witness described that Smith began to shake and writhe violently, in thrashing spasms and seizure-like movements, at about 7:58 p.m. The force of his movements caused the gurney to visibly move at least once. Smith’s arms pulled against the straps holding him to the gurney. He lifted his head off the gurney and then fell back. The shaking went on for at least two minutes…Smith began to take a series of deep gasping breaths, his chest rising noticeably. His breathing was no longer visible at about 8:08 p.m.[78].

Earlier in January 2021, the United Nations confirmed that medically assisted dying “for people who are not terminally ill or suffering at the end of their lives, such legislative provisions tend to rest on – or draw strength from – ableist assumptions about the inherent ‘quality of life’ or ‘worth’ of the life of a person with a disability”[79]. Personally, worrisome is that in a sample of MAiD applications 6 months after Track 2 was initiated out of “54 patient assessments, there was only 1 person with long-standing physical disability caused by tetraplegia. Most patients had chronic pain syndromes or a complex chronic condition (ME or CFS). Many had multiple diagnoses, including concurrent mental illnesses”[80]. Warranting a comprehensive review of all MAiD cases from an intersectional framework and routine autopsies general practitioners and nurse practitioners are sorting who qualifies to be euthanized for complex conditions like ME linked to viral infections, including LC that are poorly understood by non-specialists. Track 2 applicants are known to have been fast-tracked to Track 1 by denying taking medications or refusing to eat.

I continue to manage ME with good results, however, I fear being asked when I occasionally end up in the emergency department at the local hospital for infection-based breathing complications if I want to access MAiD.  The very idea is worrying because of gendered experiences of colonialism and eugenics that continue to restrict my capacity for self-determination marked by empowerment aided by institutional structures. Of course, recovery from ME was also a long process obstructed by uninformed physicians. My family still talks about the trauma we endured together without access to specialized care raising concerns over excluding kin in MAiD assessments, especially for collectivist cultures. I have hidden my ME diagnosis and health care experiences until recently due to stigma adding to issues of offering MAiD to people chronically ostracized in medicine. Key questions to be answered by the Supreme Court of Canada in the future “are the Charter rights of disabled people best protected by eliminating their access to assisted suicide or by allowing disabled people to seek MAID if their suffering is intolerable?”[81]. Euthanizing individuals under Track 2 MAiD in medical creep will inevitably harm a growing number of disabled people worldwide lobbying for better healthcare and disability supports. It is estimated that 36 million people across Europe may have experienced LC  that share some biological mechanisms and symptoms with ME, which scientists still do not know enough about[82]. In Canada, 2.1 million people live with LC and 40% have difficulty accessing healthcare. A neglected policy issue LC is more common in racialized groups with Black Canadians disproportionally affected linked to racism, sexism, and systematic discrimination[83].

Sidelined in debates, MAiD drug protocols potentially constitute torture supporting repealing Track 1 and 2 MAiD. Canadian physician and anesthesiologist working in the United States, Joel Zivot argues that as in capital punishment cases determined in autopsies “like pentobarbital execution, propofol will very likely burn its way through the lungs and cause the frothy fluid accumulations seen in lethal injection. The experience of this will be akin to death by drowning. Waterboarding, widely understood as torture, creates the same effect”[84]. In Senate hearings on MAiD in 2021, Zivot called for all cases of MAiD to be examined since a paralytic injected after the propofol will make euthanasia appear peaceful to observers. DWDC refutes the claim backed by Dr. Tim Holland head of the bioethics department of Dalhousie University, who is a MAiD provider. Holland argues much larger doses of propofol are used in MAID procedures to ensure patients fall into a deep state of unconsciousness, along with smaller doses of Midazolam to sedate patients unlike in capital punishment cases in America[85]. In any case, controversies bolstered by sensitivities and resistance to drugs common among people with disabilities warrant dedicated autopsies on people using MAiD services to determine if injected drugs contribute to suffering and constitute torture. Smith testified in the news surviving an initial capital punishment execution by lethal injection, he was frightened and suffered trauma sidelined by an unsympathetic public.

The ingestion of lethal drugs less commonly used in MAiD is more clearly discernable as causing suffering and falling under the category of medical experimentation consistent with torture. According to a review in the British Medical Bulletin The Canadian Association of MAiD Assessors and Providers acknowledges that patients who ingest assisted suicide drugs can experience burning, nausea, vomiting and regurgitation, especially if the patient is experiencing difficulty swallowing large volumes of liquid. Nausea, oesophagitis, gastritis, severe dehydration or pathology of the gastrointestinal tract likely interfere with drug absorption. This is reflected in the data published by US states such as Oregon, where annual complication rates have been as high as 14.8% and patients are reported to have experienced difficulty swallowing or drug regurgitation, seizures and have even regained consciousness after ingesting the ”lethal” drugs[86].   Echoing the words of the disabled activist Carr, the aggressive promotion of neo-eugenics in Canada influencing other countries is threatening. I use my voice to draw attention to cross-cultural issues in debates and call for solidarity among feminist, decolonial, anti-eugenic, anti-racism, and other academics with disabled people in movement building rallying around the disability affirmative principle ”nothing about us without us” in calls for policy reforms that support dignity in life.

 

Conclusion

To conclude amplifying disabled women’s voices, I am troubled that culturally, politically, socially, and/or economically marginalized people with disabilities are among those considering euthanasia contextualized by COVID-19 pandemic responses. Canadian politicians across the political spectrum have exacerbated social vulnerability among poor disabled people living on federal and provincial benefits marked by deep poverty entailing food scarcity, insecure and substandard housing, and homelessness among critical problems, alongside the privatization of healthcare in Ontario. Growing controversies over disabled people seeking death to escape social suffering and isolation demand the inclusion of racialized and other minoritized groups at the table to discuss the compound harms of public health and social policies, which historically disproportionally affect women for cost savings. Hidden populations need to be visibilized and encouraged through outreach to participating, especially women (including transwomen) in discussions on medical racism and discrimination to help ensure a balanced debate on assisted suicide or euthanasia and any proposed reforms. I have attempted to show that a relational approach to rights and autonomy supports repealing Track 2 MAiD in favour of a holistic approach to human rights taking Indigenous rights into account. This is to help support flourishing across the ages among individuals living with chronic illnesses and disabilities influenced by cultural, political, and social environments.

In September 2024, a coalition of disability rights groups and disabled individuals filed a lawsuit claiming that Track 2 MAiD violates the Charter rights of disabled people. A feminist approach to complex legal issues may promote disabled people’s spectrum of rights to achieve gender justice, which needs to be the focus of any authorized challenge. This will help to prevent compounding traumas among minoritized settler groups such as Roma and Laestadian women exposed on the group level to harmful eugenic practices such as unethical sterilization constituting torture in Europe. Many women exposed to transcolonial eugenics like myself continue to process historical trauma as we seek to realize autonomy through emancipation and empowerment as living subjects. Choosing to be euthanized as a minoritized disabled woman would simply increase personal suffering, as well as collectively degrade and harm the communities I belong to.

 

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[1] Dying With Dignity, “Dying With Dignity,” Newsletter 10, no. 4, Toronto, Ontario, October 1993.

[2] Carla Lucchetta, “The Tough Road to Legalization for Canada’s Right to Die Movement,” TVO Today, June 8, 2016, https://www.tvo.org/article/the-tough-road-to-legalization-for-canadas-right-to-die-movement.

[3] In the Canadian Parliament’s third reading of Bill C-14 in May 2016, section 241.2 states that natural death must have become reasonably foreseeable taking into account all of a person’s medical circumstances. See  https://www.parl.ca/DocumentViewer/en/42-1/bill/C-14/third-reading.

[4] Dying with Dignity Canada, Mature Minors, n.d., https://www.dyingwithdignity.ca/advocacy/mature-minors/#:~:text=With%20special%20eligibility%20criteria%20in%20place,%20and%20appropriate.

[5] Aaron Trachtenberg and Braden Manns, “Cost Analysis of Medical Assistance in Dying in Canada,” CMAJ 189, no. 3 (2017): E101-E105; The Standing Senate Committee on Human Rights, The Scars that We Carry: Forced and Coerced Sterilization of Persons in Canada – Part II (Ottawa: Senate of Canada, 2022), https://publications.gc.ca/collections/collection_2022/sen/yc32-0/YC32-0-441-4-eng.pdf.

[6] World Health Organization, Eliminating Forced, Coercive and Otherwise Involuntary Sterilization: An Interagency Statement (Geneva, Switzerland: World Health Organization, 2014), p. 1.

[7] See An Act of Genocide: Colonialism and the Sterilization of Aboriginal Women by Karen Stote for analysis of the eugenic sterilization of First Nation, Métis, and Inuit women linked to settler-colonialism in Canada.

[8] Canadian Romani Alliance, Confronting Major and Everyday Discrimination Romani Experiences in Canada’s Greater Toronto-Hamilton Area, FXB Center for Health and Human Rights at Harvard University (United States: Harvard University, 2024), vi, https://fxb.harvard.edu/wp-content/uploads/sites/2464/2024/09/FXB_CRA-Canada-Report-Final_Confronting-Major-and-Everyday-Discrimination-Romani-Experiences-GTHA.pdf#:~:text=The%20Confronting%20Major%20and%20Everyday%20Discrimination%20study.

[9] Monica Williams, Muna Osman, and Chrysalis Hyon, “Understanding the Psychological Impact of Oppression Using the Trauma Symptoms of Discrimination Scale,” Chronic  Stress (2023): 7: 24705470221149511.

[10] Canadian Romani Alliance, Op. cit., p. Vi.

[11] Karen Stote, An Act of Genocide: Colonialism and the Sterilization of Aboriginal Women, Fernwood Publishing, Winnipeg and Halifax, 2015, p. 30.

[12] Rauna Kuokkanen, Restructuring Relations: Indigenous Self-Determination, Governance, and Gender, Oxford University Press, United Kingdom, 2019, p. 17.

[13] Eve Tuck and Wayne Yang, “Decolonization is Not a Metaphor”, in Decolonization: Indigeneity, Education & Society 1, no. 1, 2012, p. 5.

[14] Historian Karen Stote in An Act of Genocide on pages 6, 7 and 30 explains that colonial policy attacks the reproductive and parentel capacity of Indigenous women as a part of assimilation processes in Canada. She argues that forced assimilation is an assault on autonomy and serves to separate Indigenous people from their lands for resource exploitation. The Canadian Senate report The Scars that We Carry: Forced and Coerced Sterilization of Persons in Canada – Part II captures that racialized and marginalized women are exposed to ongoing eugenic practices targeting women’s reproduction.

[15] Canadian Romani Alliance, Op. cit., p. 3.

[16] Ibidem, p. 33.

[17] Idem, p. v.

[18] Gerald Thomas Conaty and Lloyd Binder, The Reindeer Herders of the Mackenzie Delta, Key Porter Books, Ontario, Canada,  2002.

[19] Ellen Jensen, We Stopped Forgetting: Stories from Sámi Americans, CallliidLagadus/Authors Publisher, Norway, 2012, p. 23.

[20] Linda Pressly, “The Community of 2,000 People with 151 Cases of Sex Crime,” BBC News, March 21, 2018, https://www.bbc.com/news/stories-43478396.

[21] Ellen Jensen, “Theorizing Lateral Violence in Sápmi,” [abstract], Septentrio Conference Series, November 2019, https://septentrio.uit.no/index.php/SCS/article/view/5084?fbclid=IwY2xjawFr01dleHRuA2FlbQIxMQABHSZcjO1b8Zkf6CkEoNHeEQuB6p_ULfcWySwv_7ncqyIGn02iWgnxQQgHdw_aem_JPDhkA98YNAmSp59LSvA6A.

[22] Lois Orton, Rachel Anderson de Cuevas, Kristefer Stojanovski, Juan F. Gamella, Margaret Greenfields, Daniel La Parra, Oana Marcu et al., “Roma Populations and Health Inequalities: A New Perspective”, in International Journal of Human Rights in Healthcare 12, no. 5, 2019, p. 320.

[23] Roma Foundation for Europe, “Q&A: A Step Toward Justice for Roma Women”, in Empower­ing Roma, Transform­ing Europe, December 2021, https://romaforeurope.org/work/articles/q-and-a-a-step-toward-justice-for-roma-women.

[24] Terry-Lee Marttinen, ”Eugenics, Admixture, and Multiculturalism in Twentieth-Century Northern Sweden”, in Journal of Critical Mixed Race Studies 1, no. 2 (2022): 233-261, https://escholarship.org/uc/item/7jt3083n.

[25] To access my testimony of coercive sterilization in Ontario, Canada see Senator Yvonne Boyer’s commemorative online platform The Stories We Tell at https://senatorboyer.ca/priorities/the-stories-we-tell/#:~:text=The%20Stories%20We%20Tell%20is%20a%20collection%20of%20brave%20and.

[26] Canadian Romani Alliance, Op. cit., p. 16.

[27] John Gilroy, Margaretha Uttjekb, Lavonna Lovernc, and John Ward, “Indigenous People with Disability: Intersectionality of Identity from the Experience of Indigenous People in Australia, Sweden, Canada, and USA”, in Disability and the Global South 8, no. 2, 2021, pp. 2081-2082

[28] Line Melbøe, “Cultural Sensitivity and Barriers: Sami people with Disabilities Facing the Welfare System,” Oxford University Press and Community Development Journal, 2018, p. 543.

[29] Ibidem, p. 539.

[30] Historical details on the psychiatrization of Sámi people in Norrbotten, Sweden can be found in my 2015 article ”Scandinavian Anthropology, Eugenics, and the Post-colonial Geneticization of Sami Culture” as well as ”Eugenics, Admixture, and Multiculturalism In 20th-Century Northern Sweden: Contesting Disability and Sámi Genocide” published in 2022.

[31] Ana Rozanova, Briefing on Discrimination and Social Exclusion of Roma with Disabilities, ERGO Network, December 9, 2022. https://ergonetwork.org/2022/12/briefing-on-discrimination-and-social-exclusion-of-roma-with-disabilities.

[32] See the ERGO Network’s Briefing on Discrimination and Social Exclusion of Roma with Disabilities cited above.

[33] Micheal Blanding, Conference Explores Link Between Anti-Roma Racism and Health Disparities, Harvard University, April 12, 2023. https://www.hsph.harvard.edu/news/features/conference-explores-link-between-anti-roma-racism-and-health-disparities.

[34] According to the UN Population Fund, women’s and girls’s lack of bodily autonomy may have worsened during the COVID-19 pandemic in several countries, placing record numbers of women and girls at risk of gendered violence. The UN observes that hundreds of millions of women and girls do not own their bodies and that their lives are governed by others. The denial of bodily autonomy is a violation of women and girls’ fundamental human rights. See “Hundreds of Millions of Women Living Lives ‘Governed by Others’, UN Report Shows”, UN News, April 14, 2021 at https://news.un.org/en/story/2021/04/1089702.

[35] Divya Goyal, “Impact of the COVID-19 Pandemic on People with Disabilities and Implications for Health Services Research”, in Journal of Health Services and Research Policy 28, no. 2, 2023, pp. 77–79; World Health Organization, “14.9 Million Excess Deaths Associated with the COVID-19 Pandemic in 2020 and 2021”, May 3, 2022, https://www.who.int/news/item/05-05-2022-14.9-million-excess-deaths-were-associated-with-the-covid-19-pandemic-in-2020-and-2021; MB Downer, and S. Rotenberg, “Disability—A Chronic Omission in Health Equity that Must be Central to Canada’s Post-Pandemic Recovery”, in Health Promotion Chronic Disability Prevention Canada, 43, no. 7, 2023, pp. 348-51.

[36] In Canada, 24 prcent of lone-parent families headed by women live in poverty compared to 5 percent two-parent families. In 2003, 43 percent of single mothered children lived in poverty. Patricia Evans in Poor Women in Rich Countries: The Feminization of Poverty Over the Life Course on page 168 identifies that growth in immigration, visible minorities, and Indigenous populations suggests that women subject to discrimination are more likely to be lone mothers living in poverty, including in retirement. According to the Canadian Women’s Foundation, 50% of status First Nations children in Canada live in poverty. As a result of the pandemic’s deepening economic disparities, disabled women on benefits are living in abject poverty in Ontario, Canada marked by food and housing insecurity along with their children. For more information see the McMaster University COVID Economic and Social Effects Study Not Back to Normal Social Assistance in Post-Pandemic Ontario, at https://labourstudies.mcmaster.ca/app/uploads/2024/06/Not-Back-to-Normal-Report-September-2023-FINAL.pdf.

[37] Isabel Grant, Janine Benedet, Elizabeth Sheehy, and Catherine Frazee, ”A Conversation on Feminism, Ableism, and Medical Assistance in Dying”, in Canadian Journal of Women and the Law 35, no. 1, 2024, p. 46.

[38] Isabel Grant, „Testimonial of Isabel Grant,” Canadian Journal of Disability Studies 13, no. 2 (2024): 226-229.

[39] Tyler Dawson, “Assisted Suicide Lawsuit Uses Charter Challenge to Go After Charter Right to MAID”, National Post, October 13, 2024. https://www.msn.com/en-ca/news/canada/assisted-suicide-lawsuit-uses-charter-challenge-to-go-after-charter-right-to-maid/ar-AA1sbqt4?ocid=BingNewsSerp#.

[40] Christoper Lyon, “Canada’s Medical Assistance in Dying System Can Enable Healthcare Serial Killing”, HEC Forum, 2024, https://doi.org/10.1007/s10730-024-09528-3.

[41] Lyon, “Canada’s Medical Assistance in Dying System Can Enable Healthcare Serial Killing”,

[42] Grant, Benedet, Sheehy, and Frazee, Op. cit., pp. 64-65.

[43] Brennan Doherty, “‘People Can’t Live on Dirt’: Disabled Ontarians Push for ODSP Reform”, TVO Today, May 9, 2022, https://www.Brennan Dohertytvo.org/article/people-cant-live-on-dirt-disabled-ontarians-push-for-odsp-reform#:~:text=The%20ODSP%20Action%20Coalition,%20of%20which%20Manson%20is%20co-chair,%20does.

[44] Tyler Cheese, “Quadriplegic Ontario Woman Considers Medically Assisted Dying Because of Long ODSP Wait Times”, CBC News, June 22, 2023, https://www.cbc.ca/news/canada/toronto/rose-finlay-medically-assisted-dying-odsp-1.6868917.

[45] The Canadian Press, “Disability Rights Groups Launching Charter Challenge Against MAID Law”, CBC, September 26, 2024, https://www.cbc.ca/news/politics/maid-charter-challenge-1.7334653#:~:text=The%20coalition%20says%20Track%202%20of%20the%20MAID%20law%20has.

[46] BBC, “Better Off Dead”

, Burning Bright Productions, May 2024, https://www.bbc.co.uk/iplayer/episode/m001z8wc/better-off-dead.

[47] For case details visit the Death By Welfare Project online at https://deathsbywelfare.org.

[48] United Nations, Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, United Nations Office of the High Commisioner, December 10, 1984, https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-against-torture-and-other-cruel-inhuman-or-degrading#:~:text=Having%20regard%20to%20article%205%20of%20the%20Universal%20Declaration%20of#:~:text=Having%20regard%20to%20article%205%20of%20the%20Universal%20Declaration%20of.

[49] United Nations, “Convention on the Rights of Persons with Disabilities”, Department of Economic and Social Affairs Social Inclusion, https://social.desa.un.org/issues/disability/crpd/convention-on-the-rights-of-persons-with-disabilities-crpd.

[50] Ibidem.

[51] Minwoo Jung, “Rights Projects: A Relational Sociology of Rights in Globalization”, in Sociological Theory 42, no 3, 2024, p. 264.

[52] Grant, Benedet, Sheehy, and Frazee, Op. cit., p. 70.

[53] Ontario Government, “Disability and Poverty in Ontario”, Accessibility for Ontarians with Disabilities Act, October 21, 2020, https://www.aoda.ca/disability-and-poverty-in-ontario.

[54] Gabrielle Peters, “First Person: A Disabled Person in the Age of MAiD”,  The Big Story Podcast,  May 31, 2024, https://thebigstorypodcast.ca/2024/05/31/first-person-a-perspective-on-maid.

[55] Laura Beth Nielsen, “Relational Rights: A Vision for Law and Society Scholarship”, in Law & Society Review 58, 2024, p. 4.

[56] Michael Grodin, Erin Miller, and Johnathan Kelly, “The Nazi Physicians as Leaders in Eugenics and “Euthanasia”: Lessons for Today”, in American Journal of Public Health 108, no. 1, 2018, pp. 53-57.

[57] Grodin, Miller, and Kelly, Op. cit., p. 54.

[58] Marius Turda, “Legacies of Eugenics: Confronting the Past, Forging a Future”, in Ethnic and Racial Studies 45, no. 13, 2022, p. 2472.

[59] Grant, Benedet, Sheehy, and Frazee, Op. cit., p. 36, p. 41.

[60] The Government of Canada recognizes females and people with underlying health conditions are at increased risk of COVID-19 complications. Canadians unable to work because of symptoms may be eligible for disability benefits or employment insurance. Those experiencing COVID-19 complications may also be eligible for Track 2 MAiD. This raises critical concern issues in light of wide criticisms that disabled people were not only overlooked but denied treatment during the height of pandemic response at hospitals. For offical information on COVID health complications see https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection/symptoms/post-covid-19-condition.html. For added details on ME also known as Chronic Fatigue Syndrome higher among women see https://www.canada.ca/en/public-health/services/reports-publications/health-promotion-chronic-disease-prevention-canada-research-policy-practice/vol-35-no-1-2015/chronic-fatigue-syndrome-fibromyalgia-canada-prevalence-associations-with-six-health-status-indicators.html.

[61] Lori Heise, Margaret E Greene, Neisha Opper, Maria Stavropoulou, Caroline Harper, Marcos Nascimento, et al., “Gender Inequality and Restrictive Gender Norms: Framing the Challenges to Health”, in Gender Equality, Norms, and Health 393, no. 10189, 2019, pp. 2440-2454.

[62] Catriona Mackenzie, “Feminist Innovation in Philosophy: Relational Autonomy and Social Justice”, in Women’s Studies International Forum 72, 2019, p. 146.

[63] Ibidem, p. 147.

[64] Carlos Gómez-Vírseda, Yves de Maeseneer, and Chris Gastmans, “Relational Autonomy: What Does it Mean and How is it Used in End-of-Life Care? A Systematic Review of Argument-Based Ethics Literature”, in BMC Medical Ethics 76, 2019, p. 8.

[65] Gómez-Vírseda, de Maeseneer, and Gastmans, Op. cit. p. 7.

[66] Rauna Kuokkanen, Restructuring Relations: Indigenous Self-Determination, Governance, and Gender, Oxford University Press, 2019, p. 98, p. 139.

[67] Ibidem, p. 139.

[68] Government of Canada, “Engagement on Indigenous Perspectives on Medical Assistance in Dying”, https://www.canada.ca/en/health-canada/programs/engagement-indigenous-perspectives-medical-assistance-dying.html.

[69] Rauna Kuokkanen, Op. cit., p. 17.

[70] Ibidem, pp. 11-12.

[71] Idem, p. 24.

[72] Ana Cristina Santos and Mara Pieri, ”My body, My Rules?: Self-Determination and Feminist Collective Action in Southern Europe”, in Routledge Handbook of Contemporary European Social Movements, Routledge, 2019, pp. 196-209.

[73] Matthew Bosworth, Daniel Ayoubkhani, Vahé Nafilyan, Josephine Foubert, Myer Glickman, Calum Davey, Hannah Kuper, “Deaths Involving COVID-19 by Self-Reported Disability Status During the First Two Waves of the COVID-19 Pandemic in England: A Retrospective, Population-Based Cohort Study”, in Lancet Public Health 6, 2021, p. e821.

[74] Tashina Blom, “My Body My Choice: The Hostile Appropriation of Feminist Cultural Memory in American Anti-Vaccine Movements”, in Memory Studies 17, no. 5, 2024, p. 1093.

[75] Living With Dignity Canada argues that Dying with Dignity advocates are concerned about access to MAiD, just like women who have fought for access to abortion services. The lobby group’s by-line It’s Your Life. It’s Your Choice mimics the feminist slogan My Body My Choice, but was adapted to accommodate doctor assisted dying services. See “My Body, My Choice”: Tricky Territory at https://living-with-dignity.ca/2023/05/09/my-body-my-choice-tricky-territory.

[76] United Nations, “United States: UN Experts Alarmed at Prospect of First-Ever Untested Execution by Nitrogen Hypoxia in Alabama”, United Nations Human Rights Office of the High Commissioner, January 2024, https://www.ohchr.org/en/press-releases/2024/01/united-states-un-experts-alarmed-prospect-first-ever-untested-execution.

[77] Reuters, “Several Arrested After American Woman Dies in First Use of Controversial Suicide Pod”, CNN World, September 25, 2024, https://www.cnn.com/2024/09/24/europe/switzerland-arrests-sarco-suicide-capsule-intl-hnk/index.html.

[78] Ibidem.

[79] United Nations, “Disability is Not a Reason to Sanction Medically Assisted Dying – UN Experts”, United Nations Human Rights Office of the High Commissioner, January 25, 2024, https://www.ohchr.org/en/press-releases/2021/01/disability-not-reason-sanction-medically-assisted-dying-un-experts.

[80] Ellen Wiebe and Michaela Kelly, “Medical Assistance in Dying When Natural Death is not Reasonably Foreseeable”, in Canadian Family Physician 69, no. 12, 2023, p. 587.

[81] Dawson, Op. cit.

[82]  Anna Grabowska, Francisco Westermeier, Francisco Westermeier, Luís Nacul, Luís Nacul, Eliana Lacerda, Eliana Lacerda, et al., “The Importance of Estimating Prevalence of ME/CFS in Future Epidemiological Studies of Long COVID”, in Frontiers in Public Health, 11, 2023, pp. 1-7.

[83] Sianne Kuang, Steven Earl, Janine Clarke, Dianne Zakaria, Alain Demers, and Samina Aziz, “Experiences of Canadians with Long-Term Symptoms Following COVID-19”, HPCDP Journal 44, no. 10, 2024, pp. 1-12. https://doi.org/10.24095/hpcdp.44.3.05.

[84] Joel Zivot, “Op-Ed: Canada’s Medical Assistance in Dying = Torturous Death”, MedPage Today, February 16, 2021, https://www.medpagetoday.com/opinion/unchartedterritory/91214?fbclid=IwY2xjawF49UBleHRuA2FlbQIxMQABHcJPgdJ2YwpmYnPk4NEHuHfj0Tlw5muW7TGoDpFioPVL_MpeK5oj1UNPyQ_aem_Y9kxW12rhQ9-wcTiBMyD4Q#:~:text=Waterboarding,%20widely%20understood%20as%20torture,%20creates%20the%20same%20effect.%20The; Joel Zivot, “Medical Assistance in Dying: Not as Easy as it Looks,” TedxEmory, May 30, 2018 https://www.youtube.com/watch?v=qsLEODxl35Q&t=36s.

[85] Joan Bryden, “Doctors Offer Duelling Views of What it’s Like to Receive an Assisted Death”, CTV News, February 3, 2021, https://www.ctvnews.ca/health/doctors-offer-duelling-views-of-what-it-s-like-to-receive-an-assisted-death-1.5293497.

[86] Ana Worthington, Ilora Finlay, and Claud Regnard, “Efficacy and Safety of Drugs Used for ‘Assisted Dying’”, in British Medical Bulletin 142, 2022, p. 18.