Abstract

In this article, I examine the possibility of a disability studies theory of "end-of-life autonomy." I define "end-of-life autonomy" as an individual's legally protected and medically enacted decision to die in response to a serious incurable medical condition. Disability studies scholars criticize such autonomy when it is exercised by persons with disabilities, but are divided on its application to the terminally ill. But the problem with end-of-life autonomy is not determining the correct population to which it applies; it is the ableism underlying the concept of "autonomy" itself. I redefine "autonomy" as a relational process of self-development that is oriented toward a greater recognition of dependence. This rethinking can make the ADA more responsive to terminally ill individuals, and helps lay the foundation for a disability studies theory of end-of-life autonomy.

Introduction

Can there be a disability studies theory of "end-of-life autonomy?" For many thinkers in the field, the answer to this question would seem to be "no." Scholars and activists within the disabled community have argued that "end-of-life autonomy," far from a benign libratory concept that empowers terminally ill individuals, frequently masks a fatal form of discrimination against persons with disabilities. This critique is a powerful indictment of the epistemological and political bases of contemporary end-of-life decision-making. Nevertheless, because of its very effectiveness, it leaves open the question of how to conceptualize a critical disability studies theory of end-of-life autonomy—and whether we should attempt to do so at all.

In this essay, I argue that an alternative formulation of end-of-life autonomy is not only possible but also necessary if disability studies is to be faithful to its goal of creating a society free from ableism. Designing such an alternative will require rethinking not only the assumptions of mainstream bioethics, but also our own received ideas about both "autonomy" and even "disability" itself. My objective is to propose a framework through which we can think through these problems and forge concrete political aims for the reform of end-of-life care in the United States. To do so, I believe, we will have to confront the ableism that is integral to the conceptions of social life and political subjectivity dominant in US society today.

I will begin by defining "end-of-life autonomy," arguing that the expression connotes the ability of the individual to choose to die in response to an incurable medical condition. I then review how writers affiliated with the field of disability studies have criticized "end-of-life autonomy" as prejudiced against persons with disabilities. These critiques emphasize the need to rethink "autonomy" not only as it applies to end-of-life decision-making, but also to democratic politics more broadly. Using critical disability studies and feminist theory, I argue that we should not conceptualize "autonomy" as an individual's fidelity to his or her character, but rather as a relational process of self-development. This refashioning of "autonomy" grounds the autonomous individual in biological and social processes, and allows for the mobilization of public resources to assist those populations most in need.

I then apply this theory of autonomy to those individuals considered at the "end-of-life." To do so, it will be necessary to redefine not only "autonomy," but also "disability" as well. Instead of defining disability as a discrete medical condition impeding one's ability to enter the labor force, I propose that we consider "disability" to be not a specific medical condition, but rather a theory of the constitutive dependence of subjectivity in democratic societies. While this redefinition of disability might seem so broad as to abandon the current concerns of the disability rights movement, I will demonstrate that it is significantly more responsive to persons with disabilities and the terminally ill. In my conclusion, I will use this model of disability to begin the process of reformulating the Americans with Disabilities Act. Such a reformulation is fundamental to the achievement of proper end-of-life care in the United States today.

What is "End-of-Life Autonomy?"

Respect for the individual's "autonomy" has been recognized as the central guiding principle for bioethical deliberation in the United States (Wolpe, 1998, p. 38). While there are many definitions of "autonomy" in bioethics, the term generally applies to the individual's freedom to make decisions about his or her medical treatment options (O'Neill, 2002, p. 37). It emerged as a means to protect individuals from "medical paternalism," in which doctor's decision on the individual's treatment could conceivably override the individual's own desires (Rothman, 2003, p. 213). In theory, "autonomy" empowers patients to decide their own fate.

To be considered "autonomous," a patient's decision must be judged "rational," but "rationality" here connotes not a shared standard of comportment, but rather the consistency of the individual's desired decision with his or her own character. As this consistency may be compromised by the outbreak of a traumatic injury, the protection of autonomy requires legal and psychiatric procedures that ascertain the "congruence of the act with one's personal values" (Werth, 1998, p. 5). Such procedures usually postulate a minimum period of time during which an individual must desire a certain action. Once this minimum period has been met, the individual can be considered of "sound mind" (Werth, p. 5), and his action to be "autonomous."

In addition to demonstrating consistency of character, the individual must be knowledgeable of the scientific information relevant to his medical condition. Consequently, "informed consent," in which doctors and scientists inform patients about the scientific and medical aspects of their situation, is a precondition of "autonomy" (Werth, p. 3). The purveyance of such information is considered a neutral act, as the imposition of the doctor's authority on the individual's choice would be precisely the sort of paternalistic incursion against which the concept of "autonomy" was designed to protect. "Patient autonomy," in the words of O'Nora O'Neill (2002), thus consists of "a right to choose or refuse treatments on offer, and the corresponding obligations of practitioners not to proceed without the patient's consent" (p. 37).

Since its inception, this bioethical conception of "autonomy" was applied to the murky area known as the "end-of-life." The expression "end-of-life" can include a range of medical conditions, including chronic diseases, terminal diseases, "severe" disabilities, persistent vegetative states, and brain death (for examples in each case see Ackerman, 1998; Dworkin 1993; Gill 1998). There is debate about which conditions the category includes, but commentators agree that non-medical and transitive conditions do not place one at the "end-of-life," no matter how severely the individual may experience them; thus, the temporary depression incurred by the loss of a loved one would not be considered an "end-of-life" condition, even if the individual felt that her life had effectively ended (Dworkin et al., 1997). Similarly, commentators are unified in considering whatever medical condition they do classify as "end-of-life" to be of a "serious" or "severe" nature, even if, amongst themselves, they might disagree on the specific conditions to which these expressions of emphasis should apply. Consequently, in spite of the seeming confusion in defining the "end-of-life," the conditions discussed under the category's rubric are united by their being incurable medical conditions considered to be severe by both the individual and the society of which she forms part.

Debates about defining the "end-of-life" are so heated because of the actions that "end-of-life autonomy" legitimizes: "End-of-life autonomy" allows individuals to take actions that will terminate their lives. While the range of these actions vary widely (and are widely debated as well)—including active euthanasia, assisted suicide, and the removal of life-sustaining treatment (passive euthanasia)—the "choice" conferred by end-of-life autonomy is always a choice to die. Such decisions are practically irreversible; they also seem to violate Western society's taboo against killing (Callahan, 1993; Kass, 2002). Their irrevocable and seemingly transgressive nature makes such "autonomous" decisions matters of particular concern for not only the individual in question, but also the broader socio-political order.

Given these debates about what actions "end-of-life autonomy" authorizes, as well as what constitutes the "end-of-life" itself, it would seem impossible to provide a general definition of the term. Nevertheless, as I have demonstrated above, in spite of the differences in definitions of "end-of-life autonomy," these definitions all ascribe to a common general formula: "End-of-life autonomy" is an individual's legally protected and medically enacted decision about whether to die in response to a serious incurable medical condition. I will maintain this general formula in discussing "end-of-life autonomy" below, as the disability studies critique that I will develop is best understood not as a targeted intervention within these current debates about definition, but rather a more global attack on the terms of debate themselves.

Disability Responses to End-of-Life Autonomy

Within the disabled community, various commentators have taken issue with the application of "end-of-life autonomy" to persons with disabilities. Carol Gill (1998) argues that, when end-of-life autonomy is applied to persons with disabilities, it becomes a vehicle for social oppression. Gill considers the application of "end-of-life autonomy" to persons with disabilities to be a double standard: Suicide is universally pathologized in US medicine, except when the suicidal individual has a disability (p. 171). This double standard indicates the presence of discrimination against the disabled. This discrimination—not the biological impairment—is the reason why persons with disabilities desire to end their lives. As a result, the application of "end-of-life autonomy" to the disabled epitomizes the very oppression that it ignores (p. 172).

Nevertheless, though the majority of the disability studies community shares Gill's concerns about the application of "end-of-life autonomy" to persons with disabilities, many disability studies advocates support the application of "end-of-life autonomy" to the terminally ill. Most prominently, in 2005, the Society for Disability Studies (SDS) was divided on whether to support a legal brief opposing the state of Oregon's assisted suicide law (Jaschik, 2005). While SDS's decision to withdraw its initial support from the brief was influenced largely by procedural concerns, the dispute spotlighted members of the disability studies community in favor of "end-of-life autonomy." Prominent disability studies scholars and advocates, including Hugh Gallagher and Drew Batavia, voiced support for the Oregon law and, more generally, for attempts to legalize physician-assisted suicide for the terminally ill (Batavia and Gallagher, 1999; Jaschik, 2005). For such disability studies scholars, the solution to debates about the place of "end-of-life autonomy" in disability studies is to separate the "disabled" from the "terminally ill," while maintaining the basic concept of "autonomy" itself.

Philosopher Felicia Ackerman (1999) has been particularly critical of such attempts by disability scholars to make a sharp distinction between disability and terminal illness. She argues that, while seemingly more benign than arguments in favor of legalizing euthanasia for the disabled, claims that the "terminally ill" should be medically assisted in ending their lives follow the same discriminatory logic. By narrowing the "end-of-life" to terminal illness, disability rights advocates create their own double standard between the "terminally ill" and the other members of the population (p. 149). This double-standard gives the terminally ill the impression that their lives are less valuable than those of others in society; as such, it is coercive, potentially inciting the terminally ill to take their own lives. The implication of Ackerman's argument is that the very concept of "end-of-life autonomy" is an oxymoron: By singling out certain groups as the recipients of "autonomy," their autonomy to decide freely is compromised.

Ackerman ultimately argues that "end-of-life autonomy" must be applied to everyone or no one (p. 150). Thus, one could argue that all individuals in society should be free to ask others to take their lives, regardless of their specific reasons for doing so. Such is the claim of libertarian commentator Thomas Szaz, who criticizes physician-assisted suicide for being too limited in its ambitions, and reducing to a medicalized population what should be a fundamental human right (Szasz, 1999). But this radical "democratization" of end-of-life autonomy does not consider the possibility that the individual's desire to die could have been mediated by social factors whose unequal nature belies the claims of democracy. Such factors could include discrimination against the terminally ill and disabled, but the problems with "autonomy" are much broader than concerns about disability. Paul Farmer and Oonagh Corrigan have independently argued that "autonomy" enforces economic and racial discrimination (Corrigan, 2003; Farmer, 2003). Historians Roger Cooter (1995), Susan Lederer (2003), and Tina Stevens (2000) have also charted how bioethical concepts like "autonomy" and "informed consent" marginalize the vulnerable populations they were meant to serve.

Such concerns indicate that the problem with "end-of-life autonomy" is deeper than whether or not the concept is applied to the "correct" population. There are fundamental problems with the construction of the "autonomous" subject itself. Unfortunately, while such problems have, to an extent, been addressed by disability studies commentators, there has yet to be an alternative formulation of "autonomy" within a critical disability studies framework. The lack of such a formulation has led to the aforementioned splintering within the disability studies community, and has hindered the power of disability studies to provide a unique model for conceptualizing and practicing end-of-life care. Thus, it will be necessary to move from a discussion of "end-of-life autonomy" to a more general consideration of the problems with "autonomy's" role as a key conception of subjectivity in liberal democratic society. This broader treatment will not only help to clarify the problems with "end-of-life autonomy," but also to show the power of disability studies to radically reformulate social relations more generally.

What is "Autonomy?"

While there are many competing conceptions of "autonomy" (Christman, 1998), there is common ground among philosophers in understanding "autonomy" to be a conception of subjectivity that defines the individual as a self-governing being (Buss, 2008). In this view, individuals are coherent, self-knowing entities with the capacity to understand and, ideally, to act on their own desires. These desires are, in turn, what is best for the individual: In other words, the individual him or herself is best able to determine his or her own conception of the "good life" (Emanuel, 1991, p. 81). This conception is considered independent of and, conceivably, even in opposition to society. The individual is thus prior to society, and while society can provide the means of realizing the individual's desires, it does not constitute them. The individual is master and creator of himself.

As a conception of subjectivity, "autonomy" determines the organization and function of the state. In liberal democracy, the state adopts an attitude of "neutrality" with regard to its citizens (Emanuel 1991, p. 36). The state does not postulate a unified vision of the "good life," to which its citizens universally ascribe. Rather, by abstaining from proposing such a unifying public conception, the state allows its citizens, in the private sphere, to determine their own vision of the "good life" (Fineman, 2004, p. 19; Emanuel 1991, p. 36). The state is thus organized to avoid paternalism, which is "the interference of a state or an individual with another person, against their will, and defended or motivated by a claim that the person interfered with will be better off or protected from harm" (Dworkin, 2010). Consequently, the liberal state fosters the "autonomy" of its citizens by abstaining from contact with them. This view is consistent with and dependent on the autonomous individual's originary asociality.

Less commented on—but no less important—is the manner in which "autonomy" conceives of the individual's relation to his or her body. The autonomous individual is master of his or her own body, but his body is not synonymous with the self. Rather, the self owns the body like a piece of property (Andrews, 1986; Rao, 2000). He or she instrumentalizes it, using it as he sees fit, in accord with his particular vision of the good life. The autonomous subject exerts mastery over his or her body; such mastery is, in fact, the mark of his freedom—and any attempt to manipulate the individual's body against his will would be the ultimate example of paternalistic domination. "Autonomy" thus reifies a Cartesian division between subjectivity and corporeality, postulating the individual as prior to his or her body in a manner that parallels his relation to society. Thus, just as society can impinge itself on the individual's autonomy, so too can the individual's body, if it resists his commands. This presumptive conflict between subjectivity and corporeality is what makes the very concept of "end-of-life autonomy" possible.

The Intersection of Political "Autonomy" and "End-of-Life Autonomy"

How does the conception of end-of-life autonomy in bioethics relate to this broader definition of "autonomy" as a form of political subjectivity? Just as "autonomy" connotes the individual's self-realization in the absence of external political impairments, so "end-of-life autonomy" marks a space in the private sphere where the individual can make decisions about his own life without imposition from political authority. The state recognizes individual "autonomy," but, due to its neutrality, it is not understood to affect "autonomy" itself. Similarly, the relevant medical information tendered in "informed consent" is a precondition for patient autonomy, but does not compromise this autonomy in any way. Like the state, this information is considered to be of a neutral character.

In this sense, "end-of-life autonomy" extends political neutrality to medical authority: The nullification of the doctor's own perspective of the "good life" and the presumed neutrality of medical data is parallel to the liberal state's coupling of a lack of a conception of a public good with its own neutral political structures. The "neutrality" of medical and political spheres is, in turn, only possible because "autonomy" conceives the individual to be primarily acorporeal and asocial. Thus, in a seeming paradox, the medical and political aspects of "autonomy" represent the individual as fundamentally independent of both medicine and politics.

The autonomous individual's independence from body and society is reflected in the construction of the bioethical encounter, as well as that of social action more generally. Consequently, one cannot discuss "end-of-life autonomy" without implicitly commenting on the political organization of life in liberal democracy. My treatment of the disability studies rethinking of "autonomy" will move between these micro- and macro- levels, in recognition that any reformulation of "end-of-life autonomy" will necessarily also reformulate the relationship between individual, society, and the state.

Rethinking Autonomy

The first claim in a disability studies reformulation of autonomy is that "autonomy" is itself, prior to any application to persons with disabilities, saturated with ableist norms. Rosemarie Garland-Thomson has argued that the rise of liberal individualism—which, as Paul Root Wolpe notes, is synonymous with autonomy (Wolpe, 1998, p. 43)—was predicated on ideals of self-government that were prejudicial against the disabled (Garland-Thomson, 1997, p. 43). The deviant corporeality of the disabled body refused the dictates of the autonomous individual. Similarly, the visible dependence of persons with disabilities on social relations—whether incarnated in caretaking bonds or technological prostheses—was the denigrated opposite of the autonomous self's constitutive independence. As a reminder of the individual's dependence on both body and society, disability represented the destruction of the autonomy (p.44). Historically, then, the rise of the autonomous subject created disability as a pathology.

For Garland-Thomson, the primordial asociality of the autonomous individual obscures the relational core of individual identity. A disability studies rethinking of autonomy, in contrast, highlights the role of relationships in the constitution of individual identity. Various sources exist for such an argument: Most recently, feminist physicist Karen Barad (2006) has analyzed the experiments of Niehls Bohr to argue that discrete relata do not preexist the relationships that bind them, but rather are a product of these relationships (p. 140). Barad's claims accord with Foucauldian accounts of the discursive production of the modern individual (Foucault, 1971, 1978). A clinical basis for such arguments can be found in the work of developmental psychologist Phillipe Rochat whose work Others in Mind postulates the primacy of culturally-formed caretaking relationships in the development of self-consciousness (Rochat, 2009). This theoretical, historical, and clinical literature demonstrates that the self is always already interpenetrated with the other. "Autonomy's" insistence on the necessarily coercive or instrumental character of relationships is thus untenable.

But disability studies also raises questions about relational theories of subjectivity. Such theories cannot account for the possibility of "internalized discrimination"—a concept fundamental to disability critique (Campbell, 2009, p. 16; Charlton, 2000, p. 27). The problem of "internalized discrimination" supersedes debates about whether the self is primarily isolated or relational. Both phenomenologically oriented and intersubjective developmental psychologists, while disagreeing on the primacy of the "first-person perspective" (Zahavi, 2005), share a view of the subject as a coherent entity. This coherence may be relational or not, but, in either case, it eliminates the possibility that a person could, in some sense, be turned against him or herself. This view of the self as a coherent entity is fundamental to the autonomous subject. The hegemony of "autonomy" in bioethics explains why the field not only considers internalized discrimination to be irrelevant to determining autonomy, but in fact cannot conceive of it as a possibility. Disability studies must propose an alternative conception of subjectivity, one based not in coherence, but rather in conflict. Grounding the subject in conflict makes it possible to conceive of how persons with disabilities, because of the conflictive nature of life in an ableist society, can persistently devalue their own existence. At the same time, a conflict-based theory of subjectivity highlights that such internalized ableism is never total—and that it always possible for individuals to oppose it. Grounding the subject of disability studies in conflict thus makes it possible to conceive of not only internalized ableism, but also a world without it.

The inability of the liberal conception of autonomy to imagine internalized discrimination relates to its model of civil society and the state. The liberal state provides the grounds for individual autonomy through the negative freedom of not interfering in the social order. This perspective naturalizes the social order as an entity that allows for the equal self-realization of its members. It cannot conceive of society as privileging some individuals over others (Felski, 1989, p. 168, cited in Slaughter, 2007, p. 146). As a result, this view is unable to conceive of ableism or, for that matter, or any form of power relations. In contrast, a disability studies rethinking of autonomy understands society to be defined, like the individual, by conflict—particularly (though not exclusively) the conflict between the able and disabled. This conflict manifests itself in and is mediated by individual psychology, just as individual psychology mediates social organization. Both must be considered, as both are fundamentally intertwined.

This critique of the presumed neutrality of the liberal state applies as well to the procedures designed to determine whether a particular individual is acting "autonomously" or not. "Autonomy" presumes a radical separation between the individual and the procedural measures taken to ensure the autonomy of his decision. The framing of the choices presented to the individual, as well as the procedures that ensure that he is of "sound mind" (Werth, 1998, p. 5) are not considered to limit him, but rather to provide neutral vehicles for the realization of his freedom. Thus, as I discussed earlier, "informed consent" is considered to be an essential precursor of autonomy because the medical information it supplies is considered to give the individual the possibility of choice, without determining which choice he or she would make.

But, as Karen Barad (2006) has argued, Bohr's experiments rendered the presumed neutrality of the measuring apparatus highly suspect. Just as relata are a product of relationships, so too the scientific measure produces the very entities whose existence it presumes to catalog (p. 140). As a result, in Barad's view, the goal of science should not be to claim the neutrality of its measures but instead to scrutinize the seemingly discrete identities that its measures create (p. 393). A disability studies critique of "autonomy" would thus draw attention to how "autonomy's" neutral procedures produce the very autonomous subjectivity they claim to discover, and how the resulting "autonomous" subject is structured according to ableist norms.

For example, Paul Root Wolpe (1998) has highlighted that the legal model for end-of-life autonomy is the private contract (p. 51). But, as Martha Albertson Fineman (2004) has pointed out, the private contract obscures the public nature of the private sphere (p. 226). This false division skews decision-making in bioethics and liberal politics more generally. While the negative freedom of autonomy leaves individuals presumably free from public forces, it does not enable them to make demands on the state and society. Thus physician-assisted suicide is legitimized as an "autonomous" choice due to its private nature, but an individual demand for healthcare would not be protected as an exercise in "autonomy" (Wolpe, 1998, p. 53).

Similarly, the presumably neutral category of the "removal of life-sustaining treatment" creates an articulation of subjectivity in which individuals exist separate from and prior to technological prostheses. An alternative, as illustrated by Fiona Kumari Campbell as well as Barad, would be to adopt the view that technology—including end-of-life technology—is expressive of and constitutive of individual character (Campbell, 2009, p. 53; Barad, 2006, p. 158-9). The seemingly "neutral" measure of the individual's desire to remove treatment is what enacts their separation, producing the asocial autonomous subject it claims to discover.

The same is true of the conception of causation underpinning "autonomy." Here, the individual's desire to die must be traced to a discrete medical cause. Were it shown that this desire were due to social or psychological factors—such as poverty or, for example, a desire to enact vengeance on a father figure—then its "autonomy" would be nullified. But this very understanding of causation presumes that medical data are discrete entities readily isolable from social, economic, and psychological forces. In fact, the central concern of the disability rights movement has been to show the social valorizations implicit in purportedly neutral medical measures (Charlton, 2000, p. 23-36). By treating medical data as neutral facts, "informed consent" separates both them and the deciding individual from any mediation by society. The result is a conception of not only medicine, but also individual subjectivity as atomized entities.

Autonomy's criterion of "consistency of character" is especially problematic. In an ableist society, individuals will, by default, tend to be consistently ableist. They will frequently have derogatory perceptions about life with disability, and will be particularly fearful of living with the open acknowledgement of their dependence on others. The achievement of such acknowledgement would not be a form of "consistency of character;" rather, it would be an active development of one's character towards a heightened understanding and experience of life as a social being. But the criterion of "consistency of character" will, in an ableist society, always be prejudiced against such realizations—considering them deformations of the individual's "consistent" self. Its seeming neutrality enforces ableism.

Finally, "autonomy" enacts a split between the individual and his or her body. The autonomous individual's consideration of his body as property precludes a consideration of the body's role in constituting subjectivity. This self/body split is inherently prejudiced against individuals who, while living, cannot express themselves in terms that render them legible as autonomous subjects. Thus, persons in persistent vegetative states cannot be recognized as autonomous beings; rather, their autonomous decision must be determined by the information on their advanced directives, which refers to a time when they were "autonomous" (Olick, 2004, p. xviii). As "vegetative" bodies, they do not figure as legal or medical subjects. This obfuscation of the living body is a product of autonomy's acoporeal construction of the self.

Thus, rather than neutral, the very measuring apparatus of "autonomy" produces a conception of the individual that, in its self-coherence and independence from both technological and biological processes, is constituted by ableist norms. This conception of the individual is buoyed by an understanding of medical data as asocial markers of objective truth, and an understanding of society as a coherent and power-free sphere that gives all its members equal opportunity for self-realization. Such a conception of subjectivity is, I have argued, inherently ableist, and it should be abandoned by disability studies. Nevertheless, though I think that we should abandon this liberal conception of "autonomy," I do not think that we can give up on "autonomy" itself. In the following section, I argue that disability studies scholars must appropriate "autonomy" for our own ends, and explain how we can do so.

A Disability Studies Conception of Autonomy

Given the critique of "autonomy" that I have presented above, one might wonder why disability studies should retain the concept at all. As an alternative, one might point to attempts to ground subjectivity not in "autonomy," but rather in the subject's constitutive "relationality." Such an alternative would accurately identify what I consider to be the main problem with the autonomous subject: the individual's purported independence from both social and biological processes. Substituting relationality for "autonomy" would seem to solve this problem, as it grounds the individual in a constitutive dependence on others. It thus seems an adequate response to the "autonomous" subject.

But the problem with "autonomy" is not that it encourages individuality and independence. Personal independence consistently has and, I believe, should remain a core value of both disability rights and liberal democracy. The problem with "autonomy," rather, is that it understands self and other to be entities that are mutually exclusive. Relationships do not constitute the self, but rather are external to it. The only manner in which such relationships can foster independence is through abstention. It is impossible to conceive of relationships that foster independence in this view. Relating with others necessarily damages the self.

A purely "relational" theory, while seeming to replace "autonomy," in fact suffers from the same problem: By eliminating "autonomy" altogether, it abandons the very notion of individual identity. This reifies a split between individual and community and results in an inability—similar to "autonomy's" own—to account for conflicts between individual and society, much less ones internal to the individual. As a result, a "relational" theory that abandons autonomy makes it difficult to account for individuality, much less to promote self-development among a population of individuals who, though in relation to one another, will also ideally be unique.

Rather than contrast "relationality" with "autonomy," I argue for a conception of "autonomy" in which the two are dialectically intertwined (for a similar argument, with an excellent literature review, see Mackenzie and Stoljar, 2000). In this view, relationships do not necessarily detract from one's autonomy. Rather, the relational constitution of the self creates the condition of possibility for autonomy. Similarly, the realization of personal autonomy should bring about a heightened conception of one's relational dependence on both the social world and one's own embodied life. The necessarily link between autonomy and relationality is the core of a disability studies theory of autonomy. Its fundamental question is not (as in the liberal conception): How can we best isolate the individual from relationships so that he or she can be autonomous? It is, rather: What kind of relationships produce autonomy?

One potential answer to this question comes through the work of several thinkers—including Martha Fineman (2004) and Eva Feder Kittay (1999)—who have argued that relationships of caretaking should form the basis of society. While the details of these authors' positions differ, they all argue that existence in society is characterized by the possibility of vulnerability—that, over the course of our lives, we will inevitably be vulnerable due to a number of possible conditions, including incurable illness and disability (Fineman, p. 35; Kittay, p. 14). As a result of our vulnerability, we enter into relationships of dependence on other individuals. Such relationships are more illustrative of the human condition than the notion of the autonomous individual—an idea that masks the inevitable and constitutive vulnerability of existence (Fineman, p. 35). As a result, we have responsibility and incentive to base society on caretaking relationships. Vulnerability thus replaces "autonomy" as the paradigm for human subjectivity, and caretaking becomes the form of relationality that best responds to the nature of human (and animal) life.

While such theories are undoubtedly an advance over individualistic theories of autonomy that deny dependence altogether, they too have a problem. By acknowledging that we will all inevitably become vulnerable (or dependent), they maintain a rigid distinction between the (currently invulnerable) able and the vulnerable disabled. On one level, as Fiona Kumari Campbell (2009) has argued, this distinction implicitly devalues disability, even as it embraces its inevitability (p. 13). At the same time, this devaluation masks the more radical revelation that the "able" depend on the disabled for their identity as superior. As Sharon Snyder and David Mitchell (2006) argue, basing themselves on the work of Michel Serres, relations of charitable caregiving are parasitic, in that the caregiver depends on the recipient of care for his or her identity just as the recipient depends on the caregiver (p. 57). Caregiving is in reality never one-way, but rather reciprocal. Nevertheless, existing "dependency" models deny this reciprocal quality of care and reinstate the ontological primacy and superiority of the caregiver. Mitchell and Snyder advocate for the more radical solution of constructing a society in which everyone is a producer through their very dependence.

Mitchell and Snyder's parasitic conception of relationality coheres well with my dialectical rethinking of autonomy, but it does not explain how such relationships can account for the development of individual identity. Donald Winnicott's conception of the mother-child relationship is helpful in this regard. Winnicott understood the mother-child relationship to provide the necessary ground from which the child's subjective sense of self developed. The maternal "holding environment" (1960, p. 591) gave the safety necessary for the infant to develop the "capacity to be alone" (1958), a capacity that, in a "paradox," was only possible in the company of the internalized maternal figure (p. 417). The child's constant (if unconscious) sense of its mother's protective presence allowed for the development of its autonomous sense of self. Autonomy and dependence are not opposed in this model; rather, dependence provides the grounds for autonomy's flourishing. If we combine Winnicott's conception of the mother-child relationship with Mitchell and Snyder's parasitic reciprocity, it is possible to understand society as providing, through its relationships, the capacity for the development of each individual's self.

While stirring, Winnicott's model of the mother-child relationship is not necessarily applicable to relations among the adult citizens of a modern nation-state. Precisely because of the dominance of "autonomy" as a mode of subjectivity, many individuals will be very reluctant to acknowledge their dependence on other members of society, much less embrace it as constitutive of the self. In other words, they are conflicted about their mutual dependence, and such conflicts constitute the core of their selves. The very existence of the "autonomous" subject attests to the existence of these conflicts (even as it produces them): "Autonomy," in its liberal form, represents an attempt to obscure the constitutive dependence of the individual on society, as well as on his or her own body. Its dominance in social life is the ultimate representation of the enormous will to not acknowledge the contingent nature of human existence.

The goal of a disability studies reformulation of autonomy should be to encourage relationships that allow individuals to acknowledge their dependence on others, as well as on their own bodies. Such encouragement must be oriented toward a reduction of an individual's conflicts about dependence. A waning of these conflicts will allow them to feel more at home in the maternal "holding environment," which will further the development of an autonomous self. Relationships that produce autonomy will thus include not only the nurturing dependence of Winnicott's conception, but also the consciousness raising necessary so that individuals can comfortably acknowledge their dependence on others. Such consciousness is not only cognitive, but also embodied, and it is enacted through concrete social practices—and, indeed, a gradual reorientation of social goals.

It is now possible for me to clearly define what I mean by "autonomy" in this disability studies reconceptualization. "Autonomy" means the substitution of a conception of the self that is defined by static, characterological consistency for one defined by the process of development; such development is measured via a great consciousness of one's dependence on other individuals as embedded in broader socio-historical processes. Nevertheless, this psychosocial process is also constitutively mediated by biological elements that, while always in dialogue with psychosocial elements, are not completely determined by them. The goal of "autonomy," rather than upholding the pretense that individuals are isolated units, is to create the relational conditions for individual self-development. Such conditions are economic, social, psychological, and biological. It is not an idealized "goal" that one achieves, but rather a constant commitment to each other's mutual development. This development, it should be noted, can be described in terms highly particular to each individual, but the orientation of individual life will be toward a heightened recognition of the particular relationships constituting the self. In this view, there can never be a completely "autonomous" person, though some people can be relatively more autonomous than others. But "autonomy," conceived of as a process, is a commitment to our mutual flourishing as individuals and a society.

The result is a shift, on the level of political institutions, from a liberal state that believes itself to foster individuality by abstaining from the private sphere, to a disabled state that, by creating the conditions in the private sphere for individuals to flourish, deconstructs the public-private distinction. On the level of interpersonal subjectivity, this is a shift in a conception of each other as competitive individuals who block each other's flourishing, to collaborators in each other's self-realization. Nevertheless, as this conception is grounded in conflict, it understands that the realization of autonomy is a difficult task that cannot be imposed on individuals from above, but rather worked through with each one of us. It is toward such a conception of autonomy that disability studies must tend: It is a radical rethinking of both society and the self.

It might seem that this broad rethinking of autonomy takes us very far away from what, after all, is the central concern of this essay: end-of-life autonomy. But this rethinking is necessary, because it is the only way in which we can recognize the dying, and give their existence a value which it is currently denied in US society more broadly, and even within much of disability studies itself. Doing so will entail redefining "disability" in a manner that can include the terminally ill as foundational members of the disabled community.

Redefining Disability

The Americans with Disabilities Act is based on providing accommodations so that individuals with disabilities can enter the labor force (Colker, 2007, p. 2; O'Brien, 2005, p. 1). As Ruth O'Brien notes, the Act defines "disability" in a manner that is situational, rather than inherent: "Disability," in the Act's meaning, is defined "by virtue of what a person cannot do rather than in terms of a specific medical condition or disease" (O'Brien, 2005, p. 1). This shift transforms disability from a discrete medical category affecting a static group of people to an "open-ended category that is nonessential, ever-evolving, and socially constructed" (p.1).

While the benefits of the ADA's situational definition of disability are significant, its emphasis on access to labor reifies a distinction between those who work and those who are unable to do so. In the Act's terms, entry into the workforce means access to society; such access entails "equality of opportunity, full participation, independent living, and economic self-sufficiency" (Colker, p.1). Those individuals who do not work lack these traits, and their continued inability to labor renders them representatives of "dependence and nonproductivity" (Colker, p. 1). The Act's progressive narrative involves moving persons with disabilities from their state of non-productive dependence to the independence of productive labor. The related binary distinctions between independence and dependence, work and non-work are thus intrinsic to the Act's self-justification as a libratory project.

While the benefits of the ADA for millions of Americans cannot be denied, it raises a dilemma for those individuals who suffer from medical ailments that preclude their entry into the workforce no matter what the accommodation. Such individuals become representative of the very dependence that the ADA liberated persons with disabilities from. That such dependence continues to be shunned is a necessary precondition of the Act's liberation narrative. The ADA thus creates a clear split in the disabled community between the "good" persons with disabilities who can work and the undeserving disabled individuals who are unable to live up to the Act's standards of independence. But, paradoxically, the manner in which the Act degrades this latter group is by stripping them of the title of "disability" and refusing to recognize them as part of the disabled community. This underscores Campbell's observation that even the disability rights movement can be subject to an ableistic logic that devalues disability.

The "terminally ill" who are potentially subject to physician-assisted suicide and those "critically ill" persons dependent on respirators would clearly seem to fall into this category of individuals so disabled that they are no longer counted within the hegemonic conception of "disability." These individuals cannot work in the conventional sense and it is difficult to understand what form of "reasonable accommodation" would allow them to integrate into the workforce—or what exactly the point of their doing so would be. Even O'Brien's radical rethinking of the ADA—which suggests making the workplace into a caretaking environment—leaves out those unable to work (O'Brien, p. 3). It thus reifies the exclusion of the terminally ill.

The beauty of Snyder and Mitchell's rethinking of the parasitic logic of society is that there is no one outside of the structure of work. It is thus not a question of moving people from dependence to independence. Rather, liberation comes via the understanding of the constitutive interdependence of social life. The failure to recognize this interdependence is what creates and simultaneously degrades the non-laboring members of society as representatives of pure dependence. But, in a typical projection, the stigmatizing of these individuals as dependents only allows the laboring class to mask their own dependence on social life. It is a structural repetition of the exclusion of disability that Garland-Thomson identified as characteristic of liberal individualism. The solution to this dilemma is not to make more people "autonomous" in these terms, but rather to change the definition of "autonomy" to include all people.

In the context of the "end-of-life" debate, this reframing involves recognizing that terminally ill individuals are thus not only dependents, but also depended on by others in society, because their very exclusion from the traditional workforce is the gesture that allows workers to think of themselves as self-sustaining. The disability rights movement has reinforced this split, but thinking about the dying as disabled provides an alternative to this model of conceiving labor and, consequently, of thinking about disability. Thus, not only is "dying" a disability, but thinking about the state of the terminally ill also makes evident the shortcomings of the original model of integrating disability into US society. It is not that everyone will become disabled; it is that the very manner we have of conceiving labor produces and is based on the ontological split between the able and disabled. The task then, of disability studies, must be to propose a model of society in which everyone is regarded as constitutively dependent. It is only through such a rethinking of disability that we will be able to recognize the existence of the terminally ill—not as individuals excluded from society, but rather as individuals who, in their dependence, epitomize the fundamental mutuality of all social relations.

Conclusion: A Disableist Approach to End-of-Life Autonomy

Disability should be redefined not as a state-of-being that, while socially-constituted, pertains only to limited members of society (the "disabled.") Rather, I would prefer to view disability as a constitutive yet unrecognized aspect of experience for all people, regardless of their physical or social position. At the same time, the desire to deny disability manifests itself in the projection of it onto certain marginalized groups who become recognized as "disabled" in society and, for that reason, degraded. Existing "dependence" theories argue that we may all become disabled, but, the reality, is that we all are disabled—just that the "disabled" are the members of society whom are made most representative of this.

It would seem that, by rendering "disability" a constitutive aspect of subjectivity, I make the term useless to address the discrimination faced by persons with disabilities. But, as I have shown, precisely the opposite is the case: The "narrow" definition of "disability" reinforces a distinction between the dependent individuals who do not labor, and the presumably independent ones who do. This distinction excludes those who cannot labor by giving the false impression that they are constitutively different from those who work. As such, it is both misleading and violent in its discrimination. Arguing for constitutive disability moves those who cannot labor from the margins of society to the center. It allows for recognition and a valorization of their dependence as an archetype for the relationality of all social life. By doing so, it gives a meaning to the existence of the terminally ill that the current conception of disability denies them.

In this new formulation, it is entirely possible to conceive of the legalization of physician-assisted suicide and euthanasia, but doing so would occur in such radically different terms that it would no longer be the same act. Currently, euthanasia discourse is heavily based on the denial and rejection of dependence and relationality. This is a direct result of the model of "autonomy" according to which it justifies itself. According to the new model of autonomy that I have proposed, in contrast, euthanasia could be justified, but only as an acknowledgment of the constitutive nature of dependence.

Specifically, a key aspect of this new model of autonomy is an understanding of the dependent nature of our relationship to our own biological matter. As Barad (2006) points out, matter is not simply socially constructed, but rather has an agency of its own (p. 183). It is thus possible to conceive of states in which one's relationship to one's own matter was such that death would be an acknowledgement of dependence, rather than a denial thereof. Euthanasia, according to such logic, would be the polar opposite of what we call "euthanasia" now. In other words, the problem with "euthanasia" was always, first and foremost, a problem with the ableist nature of the reigning definition of "autonomy." Recognizing this necessarily entails a consideration of issues that seem beyond the purview of the "end-of-life," but, as I have demonstrated, are in fact at its core.

But the specificity of the "end-of-life" must be recognized as well. Here, I have laid the grounds for a critical disability studies theory of end-of-life autonomy. The reorientation of the autonomous subject and redefinition of disability that I have suggested are initial moves in the development of such an account. But the contours of this subject will have to be further specified through a historically informed examination of the functioning of end-of-life autonomy in particular caretaking settings. Through such an examination, it will be possible to recognize both the needs and the contributions of the terminally ill that our current conception of "end-of-life autonomy" makes impossible for us to perceive.

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Copyright (c) 2011 Harold Braswell



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