AuthorBeaudry, Jonas-Sebastien

Acceptance of the decaying body is a constant reflexible process--a project of the self that continues to the end. Such a project requires the dying person to constantly reconstruct and reframe a sense of self, as the body becomes more demanding, unstable, unreliable, and frail. (1) I. INTRODUCTION

This essay begins with Susan Sontag's insight that "it is hardly possible to take up one's residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped." (2) I argue that somatic oppression's "lurid metaphors" are susceptible to affect the autonomy--conceptualized as a relational competency--of vulnerable populations in the context of medical aid in dying (MAiD). In this introduction, I situate and explain this claim.


    MAiD has become part of the medical and legal Canadian landscape through successive judicial and legislative steps: Quebec's Act Respecting End-of-Life Care, (3) the Supreme Court of Canada's ("SCC") decision in Carter v Canada (Attorney General), (4) and an amendment to the Criminal Code. (5) Parliament gave access to MAiD to people who have a "grievous and irremediable medical condition". (6) This legal framework has been controversial, since Parliament imposed stricter restrictions on access to MAiD than the guidelines suggested by Carter, in addition to excluding advanced directives for MAiD, access to MAiD by mature minors, and by people whose sole medical condition is a mental disorder for which the government mandated additional research. (7)

    The Carter case considered a challenge to sections 14 and 241 of the Criminal Code, which jointly prohibited MAiD in Canada. In their ruling, the SCC pitted the autonomy of those who are seeking to die against the need to protect the vulnerable from unwanted assistance in dying. (8) The idea that the quality and authenticity of this desire itself requires scrutiny and protection from oppression was not explored beyond ensuring the provision of consent. At most, the court suggested that oppression may already occur in the context of passive euthanasia (so why not, readers must imply, in the context of active euthanasia as well), (9) which seemed a fallacious kind of levelling down akin to the infamous "separate but equal" doctrine. (10) The social and psychological dimensions of autonomy were not significantly considered insofar as threats to autonomy and vulnerability more generally were approached through the lens of protecting individuals from coercion.

    The Quebec Superior Court recently declared that the Criminal Code's provision that only people whose natural death was "reasonably foreseeable" could access MAiD infringed individual rights to equality, life, liberty and security. (11) The federal government stated that it would not appeal this ruling. (12) Like the SCC in Carter, the provincial Court did not discuss ableism, ageism, "disease-ism", or socio-economic vulnerability in relation to MAiD--factors that provide the context for life with a disability in our society. The Quebec Court also implied that belonging to a group that has historically suffered from denigration or marginalization is irrelevant to the rights to life, security, and liberty. (13)

    These decisions reflect the broader failure of legal scholarship to conceptualize the interrelationship between autonomy and consent. One of the few exceptions is Karine Millaire who, in her recent analysis of the concept of autonomy in the Carter decision, argues that constitutional law must "take full measure of what it means to protect personal autonomy beyond protecting free choice". (14) Millaire claims that the SCC's decision protects personal autonomy, conceptualized by Gerald Dworkin as the outcome of a procedural process through which one comes to endorse one's own desires. However, as she correctly recognizes, the SCC only protects the possibility for an individual to act autonomously, (15) and her argument therefore circumvents important issues, namely: what are the relational, social, economic, political, cultural, and psychological conditions for this possibility to stand a fair chance of materializing? Moreover, the typology of autonomy she proposes does not address the issue of oppression. Her survey of autonomy theories ends with early procedural theories of autonomy (16)--precisely the ones feminist theorists have long problematized for extracting the practice of autonomy from its social context--thus comforting rather than challenging the traditional conflation of autonomy and consent enforced in Carter. (17)

    The concept of relational autonomy has gained growing traction in philosophical and legal circles over the last thirty years. Its proponents consider autonomy to be a capacity that is exercised socially in the process of constructing a relational self. (18) Feminist bioethicists have used "relational autonomy" to criticize the limits of what consent can accomplish. (19) It is surprising that, in the midst of polemics polarizing the disability community, the public, and academia, theorists of relational autonomy have not paid attention to the kinds of oppression susceptible to affect the autonomy of socially vulnerable populations in the context of MAiD. (20) This essay draws from theories of autonomy developed by relational, feminist, and disability theorists in order to remedy this lacuna. Two main positions have emerged regarding access to MAiD in public and academic discourses: (1) a restrictionist position advocating a ban or more stringent measures of safeguards (21) and (2) an expansionist position advocating broader access to MAiD. (22) In their basic forms (most variants are more nuanced), the restrictionist position is articulated around the importance of protecting vulnerable lives while the expansionist position is predicated on the value of autonomy. Both positions are endorsed by activist groups in courts. (23)

    While both sides gesture at the impact of somatic oppression (especially ableism) on autonomy, they lack a relational conceptualization of (1) the dimensions of autonomy at play (currently, the language is focused on "consent"); (2) the threats that weigh on autonomy (currently limited to notions that can vitiate consent, such as undue influence, lack of information, abuse, or coercion); (3) the wrongness of this threat (currently, paternalism or violation of autonomy qua uncoerced expression of desire to die); and (4) the remedies it calls for (currently, access or non-access to MAiD through ban and legalization or broadening and tightening of eligibility criteria). (24)

    By contrast, once we apply a framework informed by disability studies and political theory to the notion of threat, and a relational lens to the concept of autonomy--that is, once we conceptualize autonomy as a relational competency that can be threatened by variants of somatic oppression--we acquire a rich theoretical arsenal to frame future policy discussions and empirical research.

    This essay is more an autonomy-based argument to lay the theoretical foundations of the social rights of oppressed populations in the context of MAiD than an argument about the permissibility of MAiD per se. Policy makers should ideally be discussing "social aid in living" rather than "medical aid in dying", or dignity in life rather than in death. It is, in itself, a social failure that disability makes international headlines when it is discussed as a reason to end "unhealthy" lives, but not when disabled people challenge unfair social structures. (25)


    The dominant conceptualization of autonomy, reflected in the notion of consent, is "atomistic" (26) in that it assumes a notion of the self that can be detached from the language, culture, and social relations from which it emerges. Since the 1980s, however, this view has increasingly come under attack by communitarian (27) and feminist philosophers. (28) Some feminist writings have rejected notions of autonomy and autonomy-centred accounts of justice and replaced them with alternative normative concepts and frameworks such as vulnerability and care. Other feminists have tried to remain within the bounds of liberalism and preserve the dimensions of autonomy and justice which they endorsed, after having dissociated them from controversial ideals of independence, and from non-tuistic, non-emotional, and decontextualized reasoning." (29) These feminist criticisms have paved the way to explore theoretical compromises that would neither abandon the concept of autonomy altogether, nor assume that liberal attempts to honour individual autonomy can be reduced to the "caricature of... the self-sufficient, rugged male individualist, rational maximizing chooser of libertarian theory". (30)

    Feminist thinkers have described their approach to autonomy as "relational" because they endorse a relational conception of the self, according to which "persons are socially embedded and that agents' identities are formed within the context of social relationships and shaped by a complex of intersecting social determinants, such as race, class, gender, and ethnicity." (31) Building on such a conception of the self, theorists of autonomy naturally focus on contingent psychological and social dimensions of decision-making rather than abstract away from them. (32) From a feminist standpoint, understanding oppression goes hand-in-hand with understanding autonomy. As Susan Dodds notes, health-care decisions are "influenced by a number of internal and external pressures including pain, discomfort, worry, and concern for others" and patients may "feel powerless and in a position of subordination to the health-care providers." (33)

    Feminist bioethicists therefore argue that we need to protect not only formal freedom of choice and consent in the healthcare context, but also to examine whether medical and social relationships, practices, and...

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