The current global pandemic will continue to challenge bioethics for decades to come. Not only did it bring about new issues of social justice, it deepened stratification of health along existing unfair structures. Further and most grimly, it can be argued the pandemic was an ethics test the global community failed. Especially to those of us invested in ethics professionally, this calls for critical reflection.Obviously, the strains of the pandemic have been very unevenly distributed. As a feminist and queer bioethicist (...) recently into her doctorship, I have had the privilege of observing the pandemic from a Northern European point of view, from Finland to be exact. Our privileges stem from makings of the... (shrink)

Mass incarceration and the aging prison population in the United States is an ethical crisis, understudied in empirical bioethics research. In this article, I share one woman’s narrative to illustrate how older Black women describe accessing healthcare while incarcerated and identify sites for bioethical exploration. I argue that, due to the punitive nature of prison healthcare interactions, wherein women are seen as inmates first and patients second, healthcare providers are caught in a trap of competing ethical commitments to their patients (...) and the state. As the prison population ages, these challenges will become more acute. Feminist bioethics has a critical role to play in imagining new possibilities for accessing, giving, and receiving care in the carceral context. (shrink)

John Bayley’s Elegy for Iris, his memoir about living with Iris Murdoch after the onset of dementia, unsettles models of mind and agency that ignore human relationship, dependency, and the vulnerabilities of the cared for and the carer. Experiencing Iris as ambiguously absent and present while he attentively cares for her, Bayley frames his memoir as an elegy, a reflection on love and loss that conventionally represents two subjects—the author and the one he lost. Bayley’s acts of care and his (...) stories about his wife, both as she was and as she has become, sustain her moral worth as a person. Writing as an elegist, a survivor entitled to be heard, Bayley moves his experience of caring and loss from personal to social realms, from speaker to listener, opening ethical space for consolation and for social responsibility for the vulnerable. (shrink)

Sensationalized representations of autistic families in film and other media frequently feature violent encounters between mothers and sons. This essay analyzes two media stories and three films that suggest how limited—and therefore misleading—popular representations of the autism family are. Except for one of the films, these representations blame the problem of adult autistic dependency on either monstrous autism or bad mothering. Doing so elides collective social responsibility for autism care and denies the reality that autistic adults continue to have complex (...) dependency needs that families cannot always meet. Narratives that sensationalize youth and adults with autism or scapegoat their maternal caregivers also diminish opportunities for social inclusion and for autistic people to live fully and dependently. (shrink)

The body in need of care is the subaltern of the neoliberal epistemic order: it is that which cannot be heard, and that which is muted, partially so even in care ethics. In order to read the writing by which the needy body writes the world, a new ethics must be articulated. Building on Jacques Derrida’s philosophy of deconstruction, Gayatri Chakravorty Spivak’s notions of subalternity and epistemic violence, critical disability scholarship, and corporeal care theories, in this article I develop an (...) ethics of needs. This is an ethical position that seeks to read the world that care needs write with the relations they enact. The ethics of needs deconstructs the world with a focus on those care needs that are presently responded to with neglect, indifference, or even violence: the absence of care. Specifically, the ethics of needs opens a space—a spacing, an aporia—for a more ethical politics of life than neoliberal biopolitics can ever provide, namely, the politics of life of needs. (shrink)

It is widely assumed that severe mental disabilities prevent relevant deliberative capacities from developing or persisting. Accordingly, excluding many people with mental disabilities from discourse practices seems justified. Against this common assumption I wish to show that the general exclusion is not justified and amounts to a form of epistemic injustice, as theorised by Miranda Fricker. The received norm of capable deliberators is connected to a specific model of deliberation. I introduce an alternative model of deliberation, which I dub the (...) joint effort model. According to this model, people with minority minds (as I call them) add valuable cognitive diversity to the process of deliberation, which is a relevant element of epistemic improvement. In this part of the argument I rely on empirically informed theoretical work by Hélène Landemore. I scrutinise the minimal requirements of capable deliberators from the perspective of a joint effort model of deliberation, and I highlight specific beneficial contributions people with minority minds can make to discourse practices. I will argue that people with minority minds can be presumptively deemed capable deliberators and that therefore their general exclusion is unjustified. (shrink)

(OPEN ACCESS) In this article, I explore the implications of three moral grounds for the justification of supported voting – respect as opacity, respect as equal status, and respect as political care. For each ground, I ask whether it justifies surrogate voting for voters unable to either communicate or give effect to their electoral judgments, due to some cognitive or communicative disability. (Henceforth: incommunicability cases.) I argue that respect as opacity does not permit surrogate voting, and equal status does not (...) justify such support – although the latter account can make sense of the value loss involved in the persistent non-participation of individuals with cognitive and communicative disabilities. Finally, I argue that an account of supported voting based on the ethics of political care can accommodate a pro tanto moral permission to provide surrogate voting as a form of support in incommunicability cases, and it can account for the inclusive approach of the UN Convention on the Rights of Persons with Disabilities to supported decision-making. However, I show that in incommunicability cases, what the political community and individual caretakers ultimately owe to adult fellow citizens as equal members of the political community is some adequate form of political care – but not necessarily surrogate voting. (shrink)

Judith Butler, Joan Tronto, and Stephen King all hinge human experience on shared ontological vulnerability, but whereas Butler and Tronto use vulnerability to build ethical commitments, King exploits aging, disability, and death to frighten us. King's horror genre is provocative for the imaginative landscape of feminist theory precisely because he uses vulnerability to magnify the anxieties of mass culture. In Christine, the characters' shared susceptibility to psychic and physical injury blurs the boundary between care and violence. Like Butler, King depicts (...) our social worlds encrusted with normative violence: the mundane ways that norms police gender, race, class, and disability identities. And like Butler, King makes undecidability a key feature of human identity: the idea that needs and identities are uncertain. Normative violence and undecidability trouble the starting point of Tronto's care theory—attentiveness to needs—because both concepts invest interdependency with ambiguity and conflict. But like Tronto, King recognizes that care-actors must act, even amid ambiguity and even when their actions make care and aggression converge. Christine's supernatural plot details the psychic possession of an American teenager, but the novel's more terrifying story is about interdependency and how normative violence is not the antithesis of care, but its dark underbelly. (shrink)

Dependency functions as a keyword in care theory. However, care theorists have spelled out the ontological and moral ramifications of dependency in different and often conflicting ways. In this article, I argue that conceptual disputes about dependency betray a fundamental discordance among authors, rooted in the empirical premises of their arguments. Hence, although authors appear to share a vocabulary of dependency, they are not writing about quite the same phenomenon. I seek to elucidate these differences by teasing out and comparing (...) different conceptions of dependency found in the literature. Borrowing a phrase from Eva Kittay, I trace four “paradigm cases” of dependency: the infant, the physically disabled person, the profoundly intellectually disabled person, and the refugee. These paradigm cases serve as the empirical touchstone from which theorists extract their conceptions of dependency. Each paradigm case, moreover, permits a particular ethical sensibility toward care. How we understand and value dependency thus seems to determine how we understand and value care, and vice versa. In this way, I contend, our normative orientation toward care might influence what sorts of dependency we see—and, by extension, which forms of dependency we fail to notice. (shrink)