This essay takes a close look at a species of care that is particularly needed by people with progressive dementias but that has not been much discussed in the bioethics literature: the activity of holding the person in her or his identity. It presses the claim that close family members have a special responsibility to hold on to the demented person's identity for her or him, and offers some criteria for doing this morally well or badly. Finally, it considers how (...) even those with dementia can hold others in their identities, and suggests that this kind of holding too can have great moral worth. (shrink)

Bioethicists think about families in terms of conflicting interests. This mistake results from an impoverished notion of informed consent. Only by adequately characterizing the process of informed consent can we capture the phenomenon of shared decisionmaking.

This essay examines the goals of care and the exercise of guardianship authority in the long-term care of persons with Alzheimer's disease and other forms of chronic, progressive dementia. It counters philosophical views that deny both agency and personhood to individuals with Alzheimer's on definitional or analytic conceptual grounds. It develops a specific conception of the quality of life and offers a critique of hedonic conceptions of quality of life and models of guardianship that are based on a hedonic legal (...) standard of “best interests.” As an alternative, it proposes a conception of quality of life based on the notions of “semantic agency” and “memorial personhood.”. (shrink)

How do we theorize the experiences of caregivers abused by their children with autism without intensifying stigma toward disability? Eva Kittay emphasizes examples of extreme vulnerability to overturn myths of independence, but she ignores the possibility that dependents with disabilities may be vulnerable and aggressive. Instead, her work over-emphasizes caregivers' capabilities and the constancy of disabled dependents' vulnerability. I turn to Judith Butler's ethics and her conception of the self as opaque to rethink care amid conflict. Person-centered planning approaches, pioneered (...) by disability rights activists, merge Butler's analysis of opacity with Kittay's work on embodied care, while also inviting a broader network of people to both interpret needs and change communities. By expanding our conceptions of dependency, feminist disability studies can continue the aim of both Kittay and Butler: to humanize unintelligible lives. (shrink)