The UN Convention on the Rights of Persons with Disabilities (CRPD) was passed in 2006 and came into force in 2008. It sets out a number of core values, including dignity, individual autonomy, non-discrimination, participation and community inclusion. Although the CRPD has been recognised as an important step forward by many disabled people and their supporters and provides the foundation for building a good life, the author argues that it does not necessarily equate with it. The underpinning Western values of (...) choice, independence and control are important, but leave out groups of marginalised people for whom these goals may not be achievable. They also present challenges and dilemmas for those involved in supporting/caring roles. In this paper, the author reflects on the implications of the CRPD for the lives of people with learning disabilities, in particular those with profound needs and explores whether it provides a genuinely coherent framework for an inclusive society. (shrink)

I explore the ethics of altering the body of a child with severe cognitive disabilities in such a way that keeps the child “forever small.” The parents of Ashley, a girl of six with severe cognitive and developmental disabilities, in collaboration with her physicians and the Hospital Ethics Committee, chose to administer growth hormones that would inhibit her growth. They also decided to remove her uterus and breast buds, assuring that she would not go through the discomfort of menstruation and (...) would not grow breasts. In this way she would stay “forever small” and be able to be carried and handled by family members. They claimed that doing this would ensure that she would be able to be part of the family and of family activities and to have familial care. But the procedure has raised thorny ethical questions. I wish to explore these questions philosophically by bringing to bear my own experiences as a mother of a grown daughter with severe cognitive impairments. (shrink)

This essay explores various roles that philosophers occupy in relation to intellectual disability. In examining how philosophers define their object of inquiry as experts and gatekeepers, it raises critical questions concerning the nature of philosophical discourse about intellectual disability. It then goes on to consider three alternate positions, the advocate or friend, the animal, and the “intellectually disabled,” each of which points to new ways of philosophizing in the face of intellectual disability.

Many social practices treat citizens with cognitive disabilities differently from their nondisabled peers. Does John Rawls's theory of justice imply that we have different duties of justice to citizens whenever they are labeled with cognitive disabilities? Some theorists have claimed that the needs of the cognitively disabled do not raise issues of justice for Rawls. I claim that it is premature to reject Rawlsian contractualism. Rawlsians should regard all citizens as moral persons provided they have the potential for developing the (...) two moral powers. I claim that every citizen requires specific Enabling Conditions to develop and exercise the two moral powers. Structuring basic social institutions to deny some citizens the Enabling Conditions is unjust because it blocks their developmental pathways toward becoming fully cooperating members of society. Hence, we have a duty of justice to provide citizens labeled with cognitive disabilities with the Enabling Conditions they require until they become fully cooperating members of society. (shrink)

This personal essay uses the first-person voice to describe the author’s experience as a dependent adult growing up in America after the Americans with Disabilities Act of 1990. The author’s personal story is contextualized as a reality specific to her race, gender, class, and degenerative physical disability. Descriptions of the author’s need for significant assistance serve as anchors for the essay’s more open-ended questions concerning care on a massive scale for multiple generations of people. Such questions seek new social imaginaries (...) that challenge Western social values of independence, individuated desires and activities, and an autonomous private life. (shrink)

Patient-centered care is now recognized as a clinical method and ideal model for patient – health professional relationships, and many definitions have influenced its evolution. Overall the patient-centered care literature has provided relatively little to define patient-centered care at the level of the patient-professional relationship. Additionally, patient-centered care lacks grounding in ethical theory. This thesis asserts that theoretical concepts from the ethics of care can provide a stronger conceptual basis for patient-centered care.This thesis begins with a critical interpretive review of (...) the patient-centered care literature, yielding 12 articles that previously introduced new theoretical and definitional work on patient-centered care and patient-centered communication. Six common themes and ideas were discovered, and include Engaging the Patient as a Whole Person, Recognizing and Responding to Emotions, Fostering a Therapeutic Alliance, Promoting an Exchange of Information, Sharing Decision Making, and Enabling Self-Management and Patient Navigation. These elements were then compared to key elements of the ethics of care. This thesis argues that feminists have good reason to consider care as a type of moral duty, and it describes how this duty functions. This thesis also argues that a duty to care is triggered when caregivers are presented with particular substantive forms of vulnerability. Specifically, this thesis argues that vulnerable subjects whose constitutive needs are at risk require particular moral obligations. The links between the ethics of care and patient-centered care are discussed, including how an ethics of care response ought to function in the health care context. Finally, the cases of J.J. and Makayla Sault, two aboriginal girls who refused chemotherapy in favour of traditional aboriginal healing practices, are analyzed. This thesis offers a short scoping review of the bioethics discourse surrounding these cases. A review of this discourse revealed several common themes, which included the peripheral importance of culture and history, the equating of best interests with survival, the supremacy of science-based medicine, and the impartial application of ethical principles. This thesis recommends that health care professionals apply an ethics of care approach to similar ethical dilemmas in the future, which involves shifting one's ethical focus to the central relationships of the case, understanding the unique perspective of the patient's narrative, and promoting a care-based rather than a justice-based approach to problem-solving. (shrink)

El texto propone una confrontación entre la fenomenología de la vita activa de Hannah Arendt y la ética del cuidado. Se trata, por una parte, de aplicar las distinciones arendtianas entre esferas pública y privada, y entre labor, trabajo y acción , a la actividad de cuidar, para reafirmar su relevancia; por otra parte, tomando el concepto de «mundo» como clave de la definición de cuidado, se ensaya una reinterpretación crítica de los conceptos de Arendt a partir de algunos análisis (...) feministas y de una fenomenología responsiva y del cuerpo, a fin de plantear una reivindicación matizada de las implicaciones públicas del cuidar, en línea con las propuestas de paso de una ética a una «política del cuidado». (shrink)

Gender greatly impacts access to opportunities, potential, and success in corporate leadership roles. We begin with a general presentation of why such discussion is necessary for basic considerations of justice and fairness in gender equality and how the issues we raise must impact any ethical perspective on gender in the corporate workplace. We continue with a breakdown of the central categories affecting the success of women in corporate leadership roles. The first of these includes gender-influenced behavioral factors, such as the (...) requirements and expectations of gendered verbal and nonverbal communication styles as well as appearance. We move on to address the impact of family on corporate leadership opportunities and success, discussing the asymmetrical evaluation of an individual’s potential, authority, and competence based on gender stereotypes of familial obligations and expectations. Finally, we address how gender impacts access to networking and sponsorship opportunities and the long-term effects of systematic limitations on women’s inclusion in the upper echelons of corporate leadership. We conclude with a summary of the questions and issues raised by our discussion and direct individuals to consider how different ethical systems and moral requirements might influence their interpretations of gender and leadership in the corporate workplace. (shrink)

This article uses elements of autoethnography to theorize an in/formal support relationship between a friend with a physical disability, who uses attendant services, and me. Through thinking about our particular “frien-tendant” relationship, I find the common scholarly orientations toward “care” are inadequate. Starting from the conversations between feminist and disability perspectives on care, I build on previous work to further develop the theoretical framework of accessible care. Accessible care takes a critical, engaged approach that moves beyond understanding “accessibility” as merely (...) concrete solutions to create more inclusive forms of care. Care, in this context, is positioned as an unstable tension among competing definitions, including that it is a complex form of oppression. Accessible care draws on feminist disability perspectives and the feminist political ethic of care to build bridges in four areas: from daily experiences of disability and support to theoretical discussions; across feminist care research and disability perspectives; across divisions and anxieties within disability communities; and from the local to transnational applications. These bridges do not aim to resolve debates but allow us to travel back and forth between differing perspectives and demonstrate the tenuous possibility of accessible practices and concepts of care. (shrink)

In this paper, I outline the cumulative network model of the self. This model articulates the self as relational, recognizing social relations as constitutive of the self. The theory arises out of concerns about the individualistic paradigms of two main frameworks in the analytic philosophical literature on personal identity, namely, the psychological and the animalist approaches to personhood and is explicitly inspired by feminist theories on relational autonomy and self. I argue that “relationality” is not only social, but that the (...) self is relational throughout, psychologically, physically, biologically, culturally, semantically, as well as socially. Hence, the self is a network of relations. The model also aims to recognize that temporality or historicity is constitutive of the self, that the self is a process, not a static three-dimensional thing. Hence, the self is a cumulative network. (shrink)

Wearable robots and exoskeletons are relatively new technologies designed for assisting and augmenting human motor functions. Due to their different possible design applications and their intimate connection to the human body, they come with specific ethical, legal, and social issues, which have not been much explored in the recent ELS literature. This paper draws on expert consultations and a literature review to provide a taxonomy of the most important ethical, legal, and social issues of wearable robots. These issues are categorized (...) in wearable robots and the self, wearable robots and the other, and wearable robots in society. (shrink)

Care work may be connected with emotional and psychological exhaustion but also gratification, reward, and self-empowerment. Caregivers experience both positive and negative emotional states in caring situations, and further studies on the rewarding and energizing aspects of care may help us to broaden our understanding of how we can reduce the degree of burden while increasing the sense of satisfaction. This article shows how the focus on emotion is a necessary step to show the ambivalences and the grey areas connected (...) with the concept of care as well as to challenge the not fully explored assumption that care is often associated with burden and stress and viewed as a result of circumstances. It reports the findings of a micro-situated study of daily care activities among 80 caregivers. Care is seen as a strategic site to grasp deeper insights into the interactional mechanisms through which the emotional dynamics revolving around care produce unanticipated outcomes in terms of symbolic and practical productivity. (shrink)

In this paper, we argue that ‘good care’ in residential nursing homes is enacted through different care practices that are either inspired by a ‘professional logic of care’ that aims for justice and non-maleficence in the professional treatment of residents, or by a ‘relational logic of care’, which attends to the relational quality and the meaning of interpersonal connectedness in people’s lives. Rather than favoring one care logic over the other, this paper indicates how important aspects of care are constantly (...) negotiated between different care practices. Based on the intricate everyday negotiations observed during an ethnographic field study at an elderly nursing home in Germany, the paper puts forth the argument that care is always a matter of tinkering with different, sometimes competing ‘goods’. This tinkering process, which unfolds through ‘intuitive deliberation’, ‘situated assessment’ and ‘affective juggling’ is then theorized along the conceptualization of a ‘practical ethics of care’: an ethics which makes no a priori judgments of what may be considered as good or bad care, but instead calls for momentary judgments that are pliable across changing situations. (shrink)

This essay interrogates the common assumption that good care is necessarily human care. It looks to disruptive fictional representations of robot care to assist its development of a theory of posthuman care that jettisons the implied anthropocentrism of ethics of care philosophy but retains care’s foregrounding of entanglement, embodiment and obligation. The essay reads speculative representations of robot care, particularly the Swedish television programme Äkta människor (Real Humans), alongside ethics of care philosophy and critical posthumanism to highlight their synergetic critiques (...) of neoliberal affective economies and humanist hierarchies that treat some bodies and affects as more real than others. These texts and discourses assist me in proposing a theory of care that regards vulnerability as the normative effect of posthuman vital embodiment, as opposed to an anomalous state that can be overcome or corrected via neoliberal practice. (shrink)

Analyses of care work typically speak of three necessary roles of care: the care worker, the care recipient, and an economic provider who makes care materially possible. This model provides no place for addressing the difficult political questions care poses for liberal representative democracy. I propose to fill this space with a new caring role to connect the care unit to the political sphere, as the economic provider connects the care unit to the economic sphere. I call this role that (...) of the “care claimant.” The labor of claiming care consists in the development, expression, and advancement of the interests of the care unit. The argument for employing this fourth care role begins by comparing Nel Noddings's phenomenological care unit to Sara Ruddick's family-based analysis. It then moves to discuss the way Eva Kittay emphasizes the dependency of the charge and its political ramifications to illustrate the need for a care claimant. After distinguishing the care claimant from the other roles of care, I examine the power relationships in the care unit and the position of the care claimant in the public sphere. (shrink)

The ethic of care provides not only a basis for understanding relationships of care at the micro level but also a potent form of political ethics, relevant to the development of welfare services. Williams (2001), for example, argues that the concept of care has the capacity to be a central referent in social policy?a point at which social and cultural transformations meet with the changing relations of welfare (Williams 2001, p. 470). English social care services are currently in another period (...) of change precipitated by the ?personalisation agenda?. This agenda is seen as having the potential to revolutionise social care, to create the conditions needed to tailor services to individual needs, and to give service users greater choice and control, including, where possible, control over their own service budgets or direct possession and management of care funds. These developments are inextricably linked to broader economic and social trends, key amongst which are the ageing of the population and changing economic conditions affecting both the labour market and the market for care services. This article applies the feminist ethic of care to an analysis of the personalisation agenda in the context of care for dependent older people. It highlights fundamental political questions posed concerning the nature and extent of older people's need for care, responsibility for meeting these needs and the associated costs. It questions whether the personalisation agenda could potentially offer a more responsive form of care, by placing more power and control in older people's hands. Key points considered are the individualisation of care and the ways in which control is conceptualised. The article concludes with an assessment of the feminist ethic of care as a basis for policy evaluation. (shrink)

There is all over the world a sort of fever affecting all the research fields related, closely or somewhat loosely,with human health issues. Some of them – cloning, therapeutic cloning, stem cell therapy, human enhancement, etc. – arise fierce and controversial public debates. At the same time, a concern can be felt worldwide that tomorrow’s medicine might well become more and more « dual », the advanced health devices threatening to become the privilege of a small whealthy minority, or at (...) least excluding the vast majority of the poor and the low middle class. Furthermore, there are even greater disparities between wealthy and poor nations in access to health care and in the level of protection available to members of the latter’s population in a medical context. The theme of rationing health care has been ongoingly gaining in prevalence over the two to three last decades in the public debates, causing many to express worries about the ability of our health system to provide both efficiency and justice in health care. But, among all the new health care devices, are there not some which could be efficient both in terms of improvement of the management of patients’ health and of a just allocation of care ? Besides, not only emerge concerns linked with the development of new technologies in health care, but also in connection with the impact of social-political transformations onto the medical relationship : what are in this context the doctor-patient relationship in regard to autonomy and gender ? Should we be free to use or not to use these new technologies ? Might not the « quest for perfection » develop into a duty of perfection ? And, with the improvement of the therapeutic power to prolong human life, are we to think of assisted suicide as the future of death ? These are some of the issues that this conference wants to adress from an ethical perspective and with rigour. To enrich our discussions also medical and life science praticioners willing to reflect ethically on moral questions of health issues in their professional life and politicians faced with ethical decisions in the domain of health are welcome to participate. (shrink)