An attempt to reduce disability discrimination can do more harm than the ostensible discrimination itself. Such is the case with Shavelson et al.’s (2023) argument for equal access to medical aid i...

Disability rights advocates have traditionally denigrated charity as politically counterproductive and inherently demeaning. This article argues that this perspective mischaracterizes charity of a religious kind. Religious charity, I argue, must be understood immanently, through an exploration of the virtues cultivated in particular religious organizations. I consider two Catholic charities: L’Arche, a community for intellectually disabled people, and the end-of-life care facility Our Lady of Perpetual Help Home. At each organization, individual acts of charity are emblematic of an underlying virtue that (...) I call caritas or charity-love. This transforms them into gestures that advance goals that are consonant with those of the disability rights movement. In the case of Our Lady, this is even true of pity, perhaps the most despised emotion of the disability rights tradition. But while disability rights advocates have characterized pity as essentially devaluing disabled people, at Our Lady, it is an emotion that freely circulates, undoing hierarchical distinctions between ability and disability, and even human and divine. This redefined notion of pity—which I term misericordia—can, I conclude provide a new foundation for disability politics, one that radicalizes the goals of the disability rights movement, while also positing objectives that go beyond legal compliance. (shrink)

Providing a model for the transformative work that is required going forward, The Crisis of US Hospice Care illustrates the potential of hospice for facilitating a new way of living our last days and for having the best death possible.

Dominant Western discourses of motherhood have depicted disabled women as incapable of being mothers. In contrast to these representations, recent literature in disability studies has argued that disabled women can provide maternal care and should therefore retain custody over their children. This literature is commendable, but its emphasis on custodial rights excludes from the category of “mother” those disabled women who cannot maintain child custody. In this article, I challenge this exclusion via an account of my experience with my two (...) mothers: my biological mother, who relinquished custody over me because of her inability to provide care, and my maternal grandmother, who raised me as her child. Theorizing this account, I argue that disability studies must adopt a conception of motherhood that recognizes both alternative kinship structures and mothers whose disabilities preclude them from fulfilling normative conceptions of maternal care. I develop such a conception by synthesizing Judith Butler's theorization of queer kinship with Donald Winnicott's rethinking of the maternal subject. I conclude by drawing on this flexible conception of motherhood to argue that my disabled mother's relinquishing of custody over me to her own mother was the very gesture in which she accepted and adopted a maternal role. (shrink)

What issues should bioethics be looking at in the next forty years? Rather than take on new issues, I believe bioethicists should rethink our approach to bioethical topics more generally. Doing so will require refashioning the field itself, but such a reinvention is the only way we can help bioethics live up to its initial ideals and be relevant to our society.Thinking about the future of bioethics should begin with a fundamental question: Is bioethics even necessary? Most bioethicists would certainly (...) think so, and they might find confirmation in histories of the field like David Rothman's Strangers at the Bedside, in which bioethics was a response to the collapse of doctor-patient relations in the midtwentieth .. (shrink)

The article presents and analyzes different approaches of U.S. bioethicists in comprehending the Nazi medical crimes after 1945. The account is divided into two sections: one dealing with discussions on research ethics and the Nuremberg Code up until the 1970s and the other ranging from the 1970s to the present and highlighting bioethics' engagement with Nazi analogies. The portrayal of different bioethical scholars, institutions, and documents—most notably Henry K. Beecher, Jay Katz, the Belmont Report, the Hastings Center, Arthur L. Caplan, (...) and Robert M. Veatch—provides a nuanced interpretation of the motives that bioethicists held and the strategies that they applied to establish an understanding of the Nazi medical crimes and their relation to contemporary bioethical issues. In this, the different approaches shared a common goal: To integrate the Nazi medical crimes into an ethical framework by means of selective acknowledgments and representation of their history. (shrink)

This article is an analysis of the relationship between US hospice structure and the feeling of being a burden to others (FBO). A goal of US hospice care is to reduce the FBO. But in America, hospice is limited in its ability to do so because of the high caregiver burden it places on family members of dying people. Through a historical study, I show that this burden was excessive when the hospice system was created and has worsened over time. (...) Through three ethnographic vignettes, I demonstrate how this burden inculcates in dying people the FBO. I then examine the bioethical implications of this finding for the existing US debate about physician-assisted suicide (PAS). The presence of FBO due to insufficient hospice care supports arguments made by PAS opponents about the social pressure placed on dying people. This finding is not itself sufficient to resolve the “right to die” debate. But it provides the ground for a compromise, across the debate, to reduce the FBO by changing US hospice structure. The resulting consensus will further the goals of both PAS proponents and opponents. (shrink)

This article is an analysis of the relationship between US hospice structure and the feeling of being a burden to others. A goal of US hospice care is to reduce the FBO. But in America, hospice is limited in its ability to do so because of the high caregiver burden it places on family members of dying people. Through a historical study, I show that this burden was excessive when the hospice system was created and has worsened over time. Through (...) three ethnographic vignettes, I demonstrate how this burden inculcates in dying people the FBO. I then examine the bioethical implications of this finding for the existing US debate about physician-assisted suicide. The presence of FBO due to insufficient hospice care supports arguments made by PAS opponents about the social pressure placed on dying people. This finding is not itself sufficient to resolve the “right to die” debate. But it provides the ground for a compromise, across the debate, to reduce the FBO by changing US hospice structure. The resulting consensus will further the goals of both PAS proponents and opponents. (shrink)

This article is an analysis of the relationship between US hospice structure and the feeling of being a burden to others. A goal of US hospice care is to reduce the FBO. But in America, hospice is limited in its ability to do so because of the high caregiver burden it places on family members of dying people. Through a historical study, I show that this burden was excessive when the hospice system was created and has worsened over time. Through (...) three ethnographic vignettes, I demonstrate how this burden inculcates in dying people the FBO. I then examine the bioethical implications of this finding for the existing US debate about physician-assisted suicide. The presence of FBO due to insufficient hospice care supports arguments made by PAS opponents about the social pressure placed on dying people. This finding is not itself sufficient to resolve the “right to die” debate. But it provides the ground for a compromise, across the debate, to reduce the FBO by changing US hospice structure. The resulting consensus will further the goals of both PAS proponents and opponents. (shrink)

This article is an analysis of the relationship between US hospice structure and the feeling of being a burden to others. A goal of US hospice care is to reduce the FBO. But in America, hospice is limited in its ability to do so because of the high caregiver burden it places on family members of dying people. Through a historical study, I show that this burden was excessive when the hospice system was created and has worsened over time. Through (...) three ethnographic vignettes, I demonstrate how this burden inculcates in dying people the FBO. I then examine the bioethical implications of this finding for the existing US debate about physician-assisted suicide. The presence of FBO due to insufficient hospice care supports arguments made by PAS opponents about the social pressure placed on dying people. This finding is not itself sufficient to resolve the “right to die” debate. But it provides the ground for a compromise, across the debate, to reduce the FBO by changing US hospice structure. The resulting consensus will further the goals of both PAS proponents and opponents. (shrink)

Ms. X is a person with cerebral palsy and schizophrenia. She has intractable bedsores that are a result of her immobility and to poor wound care related to her delusional thinking. Despite intensive community support, the wounds have worsened to the point that she has needed multiple hospitalizations to prevent systemic sepsis, a life‐threatening condition. She is capable of placement decisions and wishes for independence at home but is incapable of making wound care decisions and does not appreciate that immediately (...) returning home from the hospital, instead of going into a special care facility, would likely result in sepsis. The resulting dilemma about discharge planning highlights the complexity involved in weighing concerns around mental illness and capacity for treatment and placement of care. The extent of the care that is required and available in a community or health care system and the slow but relatively certain progression of the symptoms also make the decision challenging. Two commentaries take very different approaches in exploring the question whether Ms. X should be supported to go home or to a special care facility. (shrink)

In this article, I propose a new model for understanding the function of representation in bioethics. Bioethicists have traditionally judged representations according to a mimetic paradigm, in which representations of bioethical dilemmas are assessed based on their correspondence to the “reality” of bioethics itself. In this article, I argue that this mimetic paradigm obscures the interaction between representation and reality and diverts bioethicists from analyzing the tensions in the representational object itself. I propose an anti-mimetic model of representation that is (...) attuned to how representations can both maintain and potentially subvert dominant conceptions of bioethics. I illustrate this model through a case study of Clint Eastwood’s film Million Dollar Baby. By focusing attention on the film’s lack of adherence bioethical procedures and medical science, critics missed how an analysis of its representational logic provides a means of reimagining both bioethics and medical practice. In my conclusion, I build off this case study to assess how an incorporation of representational studies can deepen—and be deepened by—recent calls for interdisciplinarity in bioethics. (shrink)