Drawing upon the practice of caregiving and the insights of feminist care ethics, I offer a phenomenology of caregiving through the work of Eva Feder Kittay and Emmanuel Lévinas. I argue that caregiving is a material dialectic of embodied response involving moments of leveling, attention, and interruption. In this light, the Levinasian opposition between responding to another's singularity and leveling it via parity-based principles is belied in the experience of care. Contra much of response ethics’ and care ethics’ respective literatures, (...) this dialectic suggests that they are complementary in ways that productively illuminate themes of each. I conclude by suggesting that when response and care ethics are thought together through the experience of caregiving, such labors produce finite responsibility with infinite hope. (shrink)

This article offers the critical concept misfit in an effort to further think through the lived identity and experience of disability as it is situated in place and time. The idea of a misfit and the situation of misfitting that I offer here elaborate a materialist feminist understanding of disability by extending a consideration of how the particularities of embodiment interact with the environment in its broadest sense, to include both its spatial and temporal aspects. The interrelated dynamics of fitting (...) and misfitting constitute a particular aspect of world-making involved in material-discursive becoming. The essay makes three arguments: the concept of misfit emphasizes the particularity of varying lived embodiments and avoids a theoretical generic disabled body; the concept of misfit clarifies the current feminist critical conversation about universal vulnerability and dependence; the concept of misfitting as a shifting spatial and perpetually temporal relationship confers agency and value on disabled subjects. (shrink)

In 1998, the US Supreme Court first held that asymptomatic HIV infection constituted a disability when it ruled on the case of Bragdon v. Abbott. The use of yet another label to identify women living with HIV has been rarely questioned. While we do value the use of this label as an anti-discriminatory strategy, we believe that there is a need to examine how language and more specifically, the use of words such as disability, limitation, and impairment may create new (...) forms of identities for women living with HIV. Using this legal case as a starting point, the goal of this paper is to critically examine the 'fabrication' of asymptomatic HIV infection as a disability. Grounded in a feminist poststructuralist perspective, this paper exposes the relationship between language, social institutions, subjectivity, and power in the construction of difference. By doing so, it addresses the identification of women living with HIV/AIDS as disabled and the self-differentiation process that they must go through in order to live as normally as possible. (shrink)

Palliative care names as one of its central aims to prevent and relieve suffering. Following the concept of “total pain”, which was first introduced by Cicely Saunders, PC not only focuses on the physical dimension of pain but also addresses the patient’s psychological, social, and spiritual suffering. However, the goal to relieve suffering can paradoxically lead to a taboo of suffering and imply adverse consequences. Two scenarios are presented: First, PC providers sometimes might fail their own ambitions. If all other (...) means prove ineffective terminal sedation can still be applied as a last resort, though. However, it may be asked whether sedating a dying patient comes close to eliminating suffering by eliminating the sufferer and hereby resembles physician-assisted suicide, or euthanasia. As an alternative, PC providers could continue treatment, even if it so far prove unsuccessful. In that case, either futility results or the patient might even suffer from the perpetuated, albeit fruitless interventions. Second, some patients possibly prefer to endure suffering instead of being relieved from it. Hence, they want to forgo the various bio-psycho-socio-spiritual interventions. PC providers’ efforts then lead to paradoxical consequences: Feeling harassed by PC, patients could suffer even more and not less. In both scenarios, suffering is placed under a taboo and is thereby conceptualised as not being tolerable in general. However, to consider suffering essentially unbearable might promote assisted dying not only on an individual but also on a societal level insofar as unbearable suffering is considered a criterion for euthanasia or PAS. (shrink)

This article inserts Aldous Huxley's Brave New World into a bioethical conversation about the value of old age and old people. Exploring literary treatments of bioethical questions can supplement conversations within bioethics proper, helping to reveal our existing assumptions and clear the way for more considered views; indeed, as Peter Swirski has argued, literary texts can serve as thought experiments that illuminate the ramifications of philosophical ideas. This essay examines the novel's representation of a society without old people in conjunction (...) with ideas about aging and life narratives put forward by philosophers and bioethicists such as Ezekiel Emanuel, Gilbert Meilaender, and Alasdair MacIntyre. While critics, and Huxley himself, view the Brave New World as dystopian primarily because of its depiction of a totalitarian society where art, truth, and meaning are sacrificed to pleasure and distraction and where the ruled are programmed not to question the values of their rulers, the novel also makes clear that the excision of old age has significant political, moral, and emotional costs. (shrink)

Having and raising children is widely regarded as one of the most valuable projects a person can choose to undertake. Yet many disabled people find it difficult to share in this value because of obstacles that arise from widespread social attitudes about disability. A common assumption is that having a disability tends to make someone unfit to parent. This assumption may seem especially relevant as a factor in decisions about whether to allow, encourage and assist disabled people to reproduce and (...) raise children. Yet there are reasons to doubt whether there is such a close connection between having a disability and lacking the ability to raise a child well. The aims of this paper are, first, to identify and clarify some values that are relevant to questions about allowing, encouraging and assisting disabled people to procreate and raise children, second, to give an overview of how these values can help us to address certain legal questions that arise for disabled people who aim to procreate and parent, third, to raise concerns about how to properly assess the parenting capacities of people with disabilities, and fourth, to suggest some ways in which having a disability can actually make someone a better parent. (shrink)

The growing field of feminist disability studies explores how human bodies are interpreted through cultural values and expectations surrounding physical and mental ability. This paper contributes to and expands upon this conversation by examining how the ideal of “able-mindedness” functions to maintain racial divisions and inequalities through attributions of cognitive and psychiatric disability to bodies of color. Drawing upon contemporary examples from popular social media, public policy, and academic discourse, the author shows how racialized and nonnormatively gendered bodies are identified (...) and interpreted through norms of able-mindedness and used as markers against which the ideal of the able mind is upheld. This “discourse of pathology” operates insidiously within academic theorizing by remaining largely invisible because it tracks our deeply ingrained assumptions about the undesirability of cognitive and psychiatric disability. The author argues that because of the entanglement of race with disability, so long as the normalizing and privileging of the ideal of able-mindedness goes unchallenged and we maintain the myth that there exists a normal mental state, both racism and ableism remain very much alive, including within the academy. (shrink)

In this paper, I argue that Jonathan Glover, a prominent advocate of human genetic engineering, relies on a limited naturalistic account of normal human function in his defense of genetic engineering as a means of decreasing future instances of disability. I show that his concept of disability and the normative argument informed by it in his Choosing Children: Genes, Disability, and Design fails to incorporate the phenomenological dimension of embodiment, and that this dimension should be included in any account of (...) disability and human flourishing. Such inclusion, however, requires us to consider seriously the counterintuitive view that racial minorities are constitutionally disabled in racist societies. (shrink)

This article surveys recent feminist contributions to moral philosophy with an emphasis on those works which engage with debates within mainstream ethics. The article begins by examining a tension said to arise from the two criteria a theory must meet if it is to count as feminist moral theory: the women's experience requirement and the feminist conclusion requirement. Subsequent sections deal with feminist relational theories of rights, feminist work on responsibility and feminist contractarian approaches to ethics. A final section looks (...) at the application of some feminist moral theories to the problem of abortion. (shrink)

Disability scholars have critiqued medical models that pathologize disability as an individual flaw that needs treatment, rehabilitation, and cure, favoring instead a social-constructionist approach that likens disability to other identity categories such as gender, race, class, and sexuality. However, the emphasis on social constructionism has left chronic illness and pain largely untheorized. This article argues that feminist disability studies must attend to the common, chronic gynecological condition endometriosis when theorizing pain. Endo is particularly important for FDS analysis because the highly (...) feminized and sexualized nature of endo pain is a major source of disability. Because medical treatments of endo enhance fertility rather than provide pain relief, those with endo must not only have access to medical services to manage their pain, but also demand better medical management of their pain as well as disability accommodations for their pain. Thus, I propose a pain-centric model of disability that politicizes pain through social-constructionist and medical models of disability by attending to the lived experiences of pain. (shrink)

Disability dance lays claim to the provocative possibilities of the disabled body, raising profound questions about the politics of art, affect, and embodiment. For scholars of religion, disability dance is a powerful—and as yet unrecognized—site for probing the sacrality and ethics enacted in disability culture. This article brings the biblical tale of Jacob and the angel into conversation with a contemporary performance, “The Way You Look (at me) Tonight,” an intimate duet between choreographer and performer Jess Curtis and Clare Cunningham, (...) an internationally acclaimed dancer who explores the artistry of lived disability experience. Using dance as a hermeneutic invitation to draw out ethical insights into risk, consent, and intimacy, I offer a disability-sensitive reading of Genesis 32—reading the angel as a body whose presence attests to the brilliant shock of disability difference and probing the psychic and somatic transformation that unfolds when Jacob comes into kinesthetic contact with disability and the sacred. (shrink)