disability, dependence, dignity and care

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DISABILITY, DEPENDENCE, DIGNITY AND CARE Eva Feder Kittay Stony Brook University/SUNY USA

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Preface People with disability continue to suffer from discrimination in jobs, education, housing, and are deprived of capabilities as basic as the freedom to move about freely. Even in aspects of life such as friendships, disabled people, especially the cognitively disabled find themselves excluded. (See Hans Reinders).

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In quest of an ethics of inclusionDisability is in search of an ethics that will articulate both the harms faced by people with disabilities, discrimination that threaten dignity as well as well-being,and offer moral resources for redress. In most dominant theories of justice, dignity is coupled with the capacity for autonomy. A person’s well-being or welfare are usually a prerequisite to autonomy, but when individuals finds themselves dependent on others, as many people with disabilities do, for self-care, for economic security, for safety, the dignity which comes with autonomy appears threatened.

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In quest of an ethics of inclusionFor this reason many people within the disability community, share the views of Michael Oliver who writes that dependency is “created amongst disabled people, not because of the effects of the functional limitations on their capacities for self-care, but because their lives are shaped by a variety of economic, political and social forces which produces this dependency” (Oliver 1989: 17).

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Dependence, disability and dignity Instead people with disability have wanted to insist on their right to live independent lives and to be granted the same justice that is bestowed on people without disabilities, or “the temporarily abled.” The need for care or as many would rather say “assistance” is viewed not as a sign of dependence but as a sort of prosthetic that permits one to be independent. Judy Heumann, one of the founders of the Independent Living Movement, wrote influentially: "To us, independence does not mean doing things physically alone. It means being able to make independent decisions. It is a mind process not contingent upon a normal body" (Heumann 1977).

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The Americans with Disability ActMuch has been accomplished by the pioneering work of these disability advocates, in the United States most notably the Americans with Disabilities Act (enacted in July 1990). That act states: “the Nation’s proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals” (ADA (a), (8)).

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Dependence, disability and dignityThe ADA legislation views the provision of care as most of us view our dependence on farmers—instrumentally. For the most part, however, we do not encounter the farmers that feed us. We need only pay a middleman who pays the farmer for the goods, yielding an exchange between independent actors—often with middlemen—on par with other exchanges in the marketplace.

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Dependence, disability and dignityProviders of care, in contrast, have to co-exist with the individuals they care for; they exert direct control over the minutiae of the life of their charge. The “middlemen” in the provision of care are the arbiters of whether and what kind of care is provided. The person in need of care is in their power with respect to intimate details of life, aspects of existence we often do not share expect with those closest to us. This is an imposition and intrusion can be oppressive and is often experienced as being at odds with dignity when it turns the disabled person into a suppliant.

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The norm of independence The situation is worse still in a world where independence is the norm of human functioning. To the degree that the impairment requires a carer for the disabled person to live her life, care (and the carer) is stigmatized by dependency.

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The stigma of dependencyIt is to this stigmatized dependency that the British Council of Organisations of Disabled People responds: “[T]he need to be ‘looked after’ may well adequately describe the way potentially physically disabled candidates for ‘community care’ are perceived by people who are not disabled … which has led to large numbers of us becoming passive recipients of a wide range of professional and other interventions. But, however good passivity and the creation of dependency may be for the careers of service providers, it is bad news for disabled people and the public purse. [(BCODP 1987: 3.2) cited in (Oliver 1989: 13)]. Note a capability theory can only be baffled by such a view as the provision of such services seems to be exactly what would be called for.

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The stigma of dependency Yet despite the achievement of the ADA itself and the opportunities it has opened, I believe there is much that is problematic in an approach that extols independence as the route to a dignified life and sees dependence as a denigration of the person. I worry that the emphasis on independence extols an idealization that is a mere fiction, not only for people with disability, but of us all. The emphasis on choice leaves out many people with disabilities for whom making choices is problematic as their cognitive function may be seriously impaired. And the denigration of care and dependency tends toward an attitude that makes the work and value of the carers invisible, thus creating one oppression in the effort to alleviate another.

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Towards an Ethics of InclusionInstead I want to suggest that those ethics of justice that put the autonomous individual at the forefront, that eclipse the importance of our dependence on one another, and that make reciprocal exchanges between equals rather than the attention to other’s needs the model of ethical interaction are not the ethics to be preferred in the construction of an ethics of inclusion—at least not without the correction of an ethic of care. Let me say parenthetically that a theory of justice based on capabilities avoids some of these difficulties but does not address dependency head-on and therefore I would argue still needs supplementation with an ethic of care.

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More specifically: Can an ethic of care be relevant to the development of an ethic of inclusion that persons with disability may want to embrace?

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Situating my place in disability In casting doubt on some central tenets of disability theory, it is important to situate myself in this discussion. It is first as a parent that I have encountered the issue of disability.

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Sesha

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Situating my place in disabilityMy daughter, is a sparkling young woman, with lovely disposition who is very significantly incapacitated, incapable of uttering speech, of reading or writing, of walking without assistance, or in fact doing anything for herself without assistance. She has mild cerebral palsy, severe intellectual disability, and seizure disorders. Although her cognitive functioning appears limited, she loves music, bathing, good food, people, attention, and love. (Some of the finest things life has to offer.)

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Situating my place in disabilityShe is fully dependent and while, at the age of 40 she (like us all) is still capable of growth and development, it is quite certain that her total dependence will not alter much. I have been learning about disability from the perspective of one who is unable to speak for herself; and it is from her and her caregivers that I have come to have a profound appreciation of care as a practice and an ethic.

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Situating my place in disability My daughter’s disabilities always threaten her with a life of diminished dignity. It is only with care, and care of the highest quality, that she can be included, loved, and allowed to live a joyful and dignified life. When I speak of disability, I think a great deal about the cognitive disability that marks her life, and my concern is that persons with such disabilities, as well as her caregivers, not be left out of considerations of justice and moral personhood.

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Situating my place in disability Coming to the question of disability from the position (or “role”) of a resolute carer of a beloved disabled person, I am invested in the idea that care is an indispensable, and even a central good—one without which a life of dignity is impossible and which is itself an expression of a person’s dignity.

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Care as a feature of a life with dignity Elsewhere I go argue that the ability of a being to give and receive care is a source of dignity for humans no less than the capacity for reason. Given that people with disabilities are attempting to cast off the perception of the disabled individual as hapless, in need of “looking after”, and are working to retrieve independence in the face of practices and persons who reinforce and heighten the sense of dependence, can care be recuperated as a valued and valuable concept?

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Three faces of Care Labor , Attitude, and Virtue The term “care” (in English) can denote a labor, an attitude, or a virtue. As labor, it is the work of maintaining others and ourselves when we are in a condition of need. It requires skills on the part of the carer and uptake on the part of the cared for. It is most noticed in its absence, most appreciated when it can be least reciprocated.

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Care as attitude As an attitude, caring denotes a positive, affective bond and investment in another’s well-being. The labor can be done without the appropriate attitude. Yet without the attitude of care, the open responsiveness to another that is so essential to understanding what another requires is not possible. That is, the labor unaccompanied by the attitude of care will not be good care (see Kittay 1999).

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Care as a virtue Care, as a virtue, is a disposition manifested in caring behavior (the labor and attitude) in which: “a shift takes place from the interest in our life situation to the situation of the other, the one in need of care” (Gastmans, Dierckx de Casterlé and Schotsmans 1998: 53). Relations of affection facilitate care, but the disposition can be directed at strangers as well as intimates.

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Features of an Ethic of Care An ethic of care develops and refines the normative characteristics in the labor, the attitude and the disposition. Most important for our purposes are the following ideas: The moral subject The nature of moral relations The nature of moral deliberation The scope of moral action The notion of harm and the aim of moral actions

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Moral Subjects/Moral Relations The moral subject is conceived as a relational self, one that is constituted in part by relationships important to a person’s identity. Among these are relations of dependence. Moral relations occur not only between equals (who have voluntarily entered that relationship), but also among those not equally situated or empowered, individuals who find themselves rather than chose these relationships, as children find themselves in relation to parents they have not chosen.

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Moral Deliberation and Scope of Moral Action Moral deliberation requires not reason alone, but also empathy, emotional responsiveness, and perceptual attentiveness. Although an ethic of care is often thought to be limited in its moral scope, confined to intimate settings, it can tread in areas usually occupied by justice as well, especially where practices of justice are inadequate to cover the contextual and narrative complexities of the situation.

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Last Updated: 8th March 2018

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