# introduction

In his famous 1946 poem, “First They Came for the Communists,” German Lutheran pastor, Martin Niemöller, laments the silence of German intellectuals and clergy — including, by his own admission, Niemöller himself — following the Nazis’ rise to power and subsequent incremental purging of their chosen targets, group after group. In this paper, I will demonstrate that, contrary to the dominant public narrative which asserts that the legalization and ongoing expansion of Medical Assistance in Dying (MAiD) in Canada is all about giving suffering people autonomy over when and how they die, the reality is altogether different. The introduction of MAiD into a healthcare system plagued by ableism is resulting in increasing numbers of people with physical illnesses and disabilities who are not at end-of-life being driven to end their lives because they cannot access sufficient financial, housing, and/or personal care supports to live with dignity in the community. More specifically, I will engage with the bioethical argument that MAiD should be considered a form of “harm reduction” for people living in “unjust circumstances” who are unable to get the supports they need to live, and who are experiencing “intolerable” suffering as a result. Using a disability ethics framework to critique this argument, I will show that it is rooted in a fatalistic acceptance of systemic ableism as an immutable fact of life, rather than as a fundamental injustice that a free and just society has a responsibility to dismantle. I will conclude this paper by considering how an increased acceptance and application of a disability ethics framework in medical and bioethical discussions of MAiD could help to better diagnose the ableism that is endemic within Canada’s MAiD regime.
# Ableism and eugenic logic in the Medical
        System

Both the initial 2016 legalization of MAiD in Canada for people with “grievous and irremediable” medical conditions whose natural death is “reasonably foreseeable,” (1) and the 2021 expansion of eligibility to include people with disabilities whose natural death is *not* reasonably foreseeable (2) marked seismic shifts in the already-often-troubled relationship between people with disabilities and healthcare providers. It created a situation in which clinicians embedded in a healthcare system saturated by ableism were given the responsibility of deciding which disabled lives should be ended via MAiD, and which should not. As Anita Ho asserts, “Even as dependency is a natural and unavoidable part of the human condition, dominant social structure continues to espouse individual self-sufficiency as a norm and an ideal, such that technological and human assistance to daily living is often interpreted by health care providers and others to indicate an unacceptably low quality of life.” (3)

The manifestations of ableism in healthcare and health ethics are legion. They range from genetic screening to detect potential disabling conditions in fetuses, which will then become candidates for selective abortion (4), to doctor’s offices with examination tables that are inaccessible to wheelchair users (5), to pandemic triage protocols that list preexisting disability as an exclusion criterion for receiving critical care in the event that critical care resources need to be rationed (6,7). All of these manifestations of ableism in healthcare and bioethics are rooted in what Rosemarie Garland-Thomson calls “eugenic logic,” that is, an ableist belief that “our world would be a better place if disability could be eliminated.” (8) MAiD is the most recent, lethal, expression of this eugenic logic.
# “Wait! No one’s ‘coming for’ anyone here! MAiD is all
        about *AUTONOMY, Not
        Eugenics*!!!”

Despite the ubiquity of medical ableism rooted in eugenic logic, whenever anyone — including and especially disability rights advocates — suggest that Canada’s MAiD regime is fundamentally ableist, and, indeed, eugenic, proponents of MAiD promptly dismiss such concerns as being, not only unfounded, but paternalistic, insofar as they undermine the autonomy of disabled people who choose to die by MAiD. Perhaps the most notable example of this is a paper entitled, “Choosing death in unjust conditions: hope, autonomy and harm reduction,” published in the *Journal of Medical Ethics*. In this paper, Kayla Wiebe and Amy Mullin “consider and reject arguments that the autonomy of people choosing death in the context of injustice is necessarily reduced, either by restricting their options for self-determination, through their internalisation of oppressive attitudes or by undermining their hope to the point that they despair” (9). Using what they term a “harm reduction” approach, they argue that “even though such decisions are tragic, MAiD should be available” to people with disabilities who cannot get the supports they need to live with dignity. This is because:

> Rather than betraying an ‘ableist bias,’ their decisions can be more charitably and respectfully interpreted as an accurate assessment of their situation. It is one thing to identify an ableist bias in a person or a policy where there is no lived experience with a disability, and quite another to attribute ableism to a person who has intimate experience living with their disability, and to on this basis question the legitimacy of their decisions regarding their own care
> — 9

Rephrased in plain language, what Wiebe and Mullin are essentially saying is, “Yeah, ableism exists, and it sucks. And we should work to reduce it. But the reality is that we will never eradicate it. So, if a person with disabilities wants to get MAiD to escape the crappy life they have because they live in an ableist society, we should believe them regarding how crappy their life is and let them die by MAiD.” In my view, such an argument is nothing other than eugenic logic cloaked in the language of autonomy.

I am far from the first person to find Wiebe and Mullin’s notion of MAiD as a form of “harm reduction” deeply problematic from an ethical standpoint. For example, in their response to Wiebe and Mullin’s original paper, Christie and Li point out that:

> Although the authors concede that providing MAiD in unjust circumstances causes harm, they do not interpret the principle of non-maleficence. Instead, they appeal to what they call ‘harm reduction,’ which is basically a restatement of the well-known ‘maximin’ rule. This approach ranks options according to outcomes and recommends the option with the least harmful consequences. They conclude that making MAiD available to these patients is less harmful than making them continue to live with intolerable suffering. This approach, however, uncritically accepts the assumption that living in unjust circumstances is the type of intolerable suffering for which MAiD is the appropriate ‘medical treatment.’
> The definition of ‘intolerable suffering,’ adopted by the authors and found in the Criminal Code is based on circular reasoning, [albeit intuitively appealing.] The patient is obviously the expert in their suffering, suggesting that they be the one to determine whether their suffering is intolerable. However, this reasoning is circular because any suffering the patient says is intolerable, is in fact intolerable.
> — 10

I would argue that the central safeguard of “intolerable suffering” is further compromised by the ubiquity of medical ableism and what disability ethicist Joel Reynolds has termed the “ableist conflation” of disability, suffering and death: “wherever operative, the ableist conflation flattens communication about disability to communication about pain, suffering, hardship, disadvantage, morbidity, and mortality” (11).

This ableist conflation of the mere presence of disabling conditions with “intolerable suffering” that is caused by a lack of community-based disability-related supports that is embedded in Canada’s MAiD regime is actually rooted in the *Truchon* decision itself. In this decision, Justice Beaudoin repeatedly states that the Plaintiffs’ mental suffering is caused by their “complete dependence and total loss of autonomy.” (12) But then, two paragraphs later, she argues that “the decision to request medical aid in dying is not motivated by their disability.” (12) This strikes me as, at best, flawed reasoning, or, at worst, disingenuous. Indeed, it seems self-evident that the Plaintiffs would not be facing a state of “complete dependence and total loss of autonomy” if they did not have disabilities. However, the assertion of a distinction between the Plaintiffs’ disabilities and their “total loss of autonomy” does point to a tangible connection between the Plaintiffs’ wish to hasten their deaths and the lack of social supports that many disability scholars and activists cite as major factors in making the lives of people with disabilities who lack the means of maintaining control of their personal care and daily choices untenable. Justice Beaudoin’s ruling thus clearly conflates the Plaintiffs’ suffering due to a loss of control with the fact that they have disabilities. Disability-rights advocate, Gabrielle Peters, calls out this ableist conflation as promulgating “a demonstrably false version of autonomy,” (13) one that is “consistent with an ableist worldview that dominates in law and culture.” (14) Yet, thanks to the Canadian federal government’s refusal to challenge this flawed decision by appealing it, we now have a MAiD law that has both this ableist conflation and this false version of autonomy as its basis.
# Collateral Damage? MAiD as the Path of Least
        Resistance

There is an ever-growing body of evidence indicating that increasing numbers of disabled people are, in fact, “choosing” to end their lives via MAiD, not because of “intolerable” suffering caused by their physical condition, but because they are unable to access sufficient medical, disability, and social supports to be able to live self-determined, dignified lives in the community (15-17). The following two cases are notable examples.

“Sophia” (a pseudonym), was a 51-year-old Ontario woman who had multiple chemical sensitivities, a chronic condition. She underwent a medically-assisted death after her desperate two-year search for affordable housing free of cigarette smoke and chemical cleaners failed. “The government sees me as expendable trash, a complainer, useless and a pain in the ass”, Sophia said in a video filmed on Feb. 14, 2022, eight days before her death. She died after a frantic effort by friends, supporters and even her doctors to get her safe and affordable housing in Toronto. Four Toronto doctors were aware of Sophia’s case, and they also wrote to federal housing and disability government officials on her behalf. In that letter the doctors confirmed that her symptoms improved in cleaner air environments and asked for help to find or build a chemical-free residence. “We physicians find it UNCONSCIONABLE that no other solution is proposed to this situation other than medical assistance in dying,” they wrote (18).

Equally troubling and tragic is the story of Sathya Dhara Kovak, a Winnipeg woman who died by MAiD on October 3, 2022. Kovac lived with amyotrophic lateral sclerosis (ALS). Her condition was worsening, but she felt she had more life to live — just not enough home care support to do so. “Ultimately it was not a genetic disease that took me out, it was a system.” Kovac wrote in an obituary to loved ones. Her obituary continues, “There is desperate need for change. That is the sickness that causes so much suffering. Vulnerable people need help to survive. I could have had more time if I had more help.” (19)

There is indeed a desperate need for change. In the words of Canadian disability scholar, Jerome Bickenbach, when an individual chooses death as the only viable way to escape an intolerable situation partly brought on by the social environment, it seems “perverse and unfair to say that this is an expression of self-determination or autonomy.” (20) There are thus two critical ethical flaws in the argument that MAiD should be considered a purely autonomous act and a form of harm reduction for structurally vulnerable disabled people who are experiencing *intolerable*suffering due to a lack of support. First, this so-called “harm reduction” approach overemphasizes an impoverished notion of autonomy at the expense of other fundamental ethical principles, such as non-maleficence and justice. Within this MAiD-as-harm-reduction approach, the only ethical consideration that matters is *who* decided on MAiD as the chosen course of action. Questions around *how* and *why* a structurally vulnerable person made the decision to die via MAiD are rendered irrelevant. Related to this is the second critical ethical flaw in the argument that MAiD should be considered as a form of so-called “harm reduction,” namely that this argument ignores the broader ethical and societal implications of viewing the lives of structurally vulnerable disabled people as harms which can be (and, ultimately, ought to be) reduced via MAiD.

Indeed, once eligibility for MAID was expanded to include people with illnesses and disabilities whose natural death is not reasonably foreseeable, Canada became a country in which it is accepted that certain sorts of lives with certain limitations can be terminated with medical assistance. This means that ill and disabled Canadians, along with their families, are now routinely encountering messages telling them that, if they are experiencing X, Y, and Z because of their condition, ending their lives through MAiD is a valid solution to their suffering. Thus, it is the lives of any and all disabled people who suffer hardship and deprivation as a result of living in an ableist society, rather than the ableism at the root of their suffering, that become “harms” to be eliminated. Canadians with disabilities are consequently rendered a dispensable class of people within Canadian society. This ultimately creates a high risk of suicide contagion among disabled people who are likewise experiencing X, Y, and Z, not simply because of their condition, but because they live in an ableist society that does not prioritize the needs of disabled people.

Given the lethal threats to disabled people that have arisen from the introduction of MAiD for disabled people who are not at end-of-life into a society and a healthcare system that are saturated in ableism and fixated on a narrow, individualistic notion of autonomy, I will spend the remainder of this paper considering the potential for disability ethics to function as a disruptor of this biomedical and bioethical privileging of a notion of autonomy that is grounded in ableism.
# Foregrounding Disability Ethics to Disrupt Ableism in
        Canada’s MAiD Regime

Disability ethics is an interdisciplinary approach to ethical dilemmas regarding life with disability. It addresses many of the same issues that bioethics addresses, and expands the focus beyond medical issues. It includes legal, policy and social justice issues that affect daily living for people with disabilities. Disability ethics shares the central theme of the disability-rights movement, “Nothing about us without us.” The primary aim of disability ethics is thus to ensure that the perspectives of people with lived experience of disability are central to discussions and debates about ethical issues involving disability and people with disabilities. In the words of Jackie Leach Scully:

> Disability ethics, like feminist ethics, is a form of ethical analysis consciously and conscientiously attentive to the experience of being/having a ‘different’ embodiment. … And doing this means working from people’s experience of disability to see if and how it colors their perceptions, interpretations, and judgments of what is going on in moral issues, especially in moral issues that have direct relevance to disability and where differences in the experience of disability might be expected to have weight
> — 21

Viewed through a disability ethics lens, autonomy looks and functions very differently than it does in traditional bioethics. This is because, as Katherine Moore points out, “People with disabilities may experience autonomy and choice — and therefore their sense of self — differently than non-disabled people. It is of unique concern to people whose autonomy is often taken away.” (22) For many disabled people, exercising autonomy necessitates some form of dependence on others to help create and/or maintain the conditions that make it possible for them to enact a chosen course of action. Reindal argues that:

> Professionals tend to define independence in terms of self-care activities. So, independence is measured against skills in relation to performance of these activities. Disabled people, however, define independence as an ability to be in control of and make decisions about one’s life. Independence is then not linked to doing things alone or without help, but by obtaining assistance when and how one requires it
> — 23

Disability ethics thus problematizes and disrupts traditional biomedical and bioethical conceptions of autonomy in some interesting and important ways, particularly in relation to MAiD. Within a disability ethics framework, autonomy is re-defined from an independent action carried out in isolation, to the facilitated ability, through the assistance of others, to choose a course of action and carry it out. Such a redefinition of autonomy calls into question the ableist assumption that it is a person’s disability, and not the fact that they live in an ableist society, that so limits their ability to make life choices that their only tenable choice is to die by MAiD. Furthermore, this redefinition of autonomy necessitates a shift in focus away from a narrow definition of autonomy as necessarily carried out completely independently by a self-governing individual, towards a broader definition of autonomy as, in some sense, a co-operative project that works towards a common good. Disability ethics thus functions in a manner similar to feminist ethics in that it broadens the concept of autonomy from being a purely individualistic phenomenon and places it into a relational context. When applied to the practice of MAiD, this exposes the ableist underpinnings of the MAiD-as-harm-reduction argument in two ways. First, it exposes the strident utilitarianism inherent in declaring disabled lives as harms to be eliminated through MAiD. And second, it reclaims space in which to consider the broader social consequences of uncritically accepting the conceptualization of the lives of disabled people as “harms” which can and should be reduced.

It is important to recognize that such a decoupling of autonomy from individualism constitutes a major heresy against what Charles Foster calls “the orthodoxy of autonomy.” (24) According to Foster, autonomy:

> … means that we all have a life-plan, we all have a right to have it respected, and if we’re to talk about such disreputable, autonomy-truncating things as duties at all, we merely have duties not to interfere with others’ life-plans. Anyone so contemptibly sub-rational or unreflective as not to have a life-plan is hardly human at all. If one can spare a little time in one’s own life-plan to help the unreflective limp towards higher self-realisation, that is a Good Thing, and the god will be pleased.
> — 24

Foster goes on to argue that “[t]his is the orthodoxy, and it is policed with terrifying vigour. To depart from it is dangerous ... And so the medical ethics journals are full of detailed descriptions of and reflections on the brocade on the Emperor’s entirely absent clothes.” (24) Most troubling though, is that this strictly prescribed adherence to the “orthodoxy” of autonomy is not just limited to the field of bioethics, rather, it has become the cardinal ruling principle of many Western democracies. Consequently, during the debate around Bill C-7, which would expand eligibility for MAiD to people with disabilities whose death is not reasonably foreseeable, both disability-rights advocates who raised concerns about introducing MAiD into a medical system and a society that is steeped in ableism, and, physicians who raised concerns about being compelled to end life rather than preserve it, were promptly dismissed as fear-mongering enemies of autonomy.

Importantly however, like Justice Beaudoin and Wiebe and Mullin, what the policymakers who thus dismissed disability-rights advocates’ concerns about introducing MAiD into a medical system and a society that are steeped in ableism failed to recognize is that their arguments for the further expansion of MAiD are rooted in inherently false and ableist notions of autonomy. The application of a disability ethics analysis to notions of autonomy that are commonly used to promote the practice and further expansion of MAiD reveals this fact. It further reveals that these arguments are centred around the erroneous and ableist isolation of a person’s disability as necessarily the cause of their intolerable suffering, without any consideration of how consequences of systemic ableism, such as poverty, lack of supports, or social isolation often combine to make their suffering intolerable. More often than not, proponents of MAiD will respond to such critiques, as do Wiebe and Mullin, by claiming that they are paternalistic in that they undermine the autonomy of disabled people who have chosen to die by MAiD rather than to continue to endure the deprivations and consequent suffering that too often come with living in an ableist society. However, this claim is deeply problematic from an ethical standpoint in that it entirely ignores and nullifies the core ethical principles of justice and nonmaleficence by uncritically accepting systemic ableism and the harsh and multifaceted deprivations that it often leads to as immutable facts of life, rather than as affronts to these core ethical principles. Furthermore, viewing this claim through a disability ethics lens necessarily challenges its narrow, individualistic conceptualization of autonomy by revealing the ways in which this individualistic view of autonomy undermines and devalues the lived experience of a multitude of disabled people for whom exercising autonomy necessitates some form of dependence on others to help create and/or maintain the conditions that make it possible for them to enact a chosen course of action.

Finally, foregrounding a disability ethics approach in the context of MAiD would foster among clinicians what Eva Kittay calls “epistemic modesty”, that is, “knowing what one does not know” (25). However, true epistemic modesty among clinicians necessitates not only knowing what one does not know but also owning (acknowledging) what one does not know in terms of unrecognized personal ableist biases.
# Conclusion

As I have endeavored to demonstrate throughout this paper, both healthcare and bioethics suffer from metastatic ableism, which is often driven by underlying eugenic logic. The introduction of MAiD into a healthcare system thus plagued by ableism has further increased the precarity of the lives of disabled people who are compelled to enter the realms of healthcare and bioethics. This is because clinicians embedded in a healthcare system saturated by ableism were given the responsibility of deciding which disabled lives should be ended via MAiD, and which should not. Consequently, in this era in which MAiD for disabled people who are not at end-of-life is becoming increasingly legalized and normalized in Western societies, it is now more than ever incumbent upon clinicians who are treating disabled patients to practice epistemic modesty. They must know and own what they do not know about their patients’ experiences of disability, and consciously and conscientiously foster anti-ableist, and disability-affirming clinical practices. Short of a successful constitutional challenge and repeal of Bill C-7, this is the only way that the realms of healthcare and bioethics can be rehabilitated into safer spaces for disabled people.

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2Parliament of Canada. Bill C-7 - An Act to amend the Criminal Code (medical assistance in dying). Government of Canada, Royal Assent, 43-2. 2021.

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