While there are urgent health-related demands surrounding dementia, there are sociopolitical dimensions to this issue that ought not to be neglected, concerning the ways in which institutions and individuals treat people living with dementia. Key among these concerns, for dementia self-advocate Christine Bryden, is the dominant narrative of dementia as a process that irreversibly sets those that live with it on a path to the destruction of their personal identities and personhood. In this paper, I bolster Bryden’s arguments against the (...) loss narrative and develop a novel conception of personhood as a first step towards challenging it. (shrink)

Hastings Center Report, Volume 52, Issue 1, Page 32-41, January/February 2022.

Across care settings, the practice of lying to or withholding the truth from people living with dementia is common, yet it is objected to by many. Contrary to this common discomfort, I have argued in previous work that respecting members of this group as moral equals sometimes requires deceiving them. In this paper, I test my proposed practice against complex, controversial cases, demonstrating both its theoretical strength and its practical value for those working in social care.

Many caregivers feel that they need to lie or withhold the truth from people living with dementia, but worry that, in doing so, they are violating a duty to tell the truth. In this article, I argue that withholding the truth from and, in limited circumstances, lying to people living with dementia is not only morally permissible, but morally required by a more general requirement that we treat each other as persons worthy of respect. I do so through an analysis (...) of the groundings of the duty to tell the truth, and a critical reflection on its cognitively ableist construction. (shrink)

Elizabeth Barnes has recently developed an account of disability that is sensitive to the role of self-evaluation. To have a physical disability is, according to Barnes, to have a body that is merely different from the norm. Yet, as Barnes notes, some disabilities will genuinely frustrate some life plans. It may be the case, therefore, that a disability is instrumentally bad for a person and that acquiring one may be a genuine loss. Equally, however, a person may genuinely value a (...) disability such that it is instrumentally good for them and that they experience the acquiring of it as a gain. Notably, Barnes explicitly restricts this analysis to physical disabilities, leaving open the status of mental disabilities. Nevertheless, Barnes does not rule out the extension of her model to this category, and she expresses a desire to see future work on other disabilities built upon it. This article takes up this challenge, making the case that to possess a mental disability is merely to possess a minority mind. (shrink)

Research misconduct remains an important problem in health research despite decades of local, national, regional, and international efforts to eliminate it. The ultimate goal of every health research project, irrespective of setting, is to produce trustworthy findings to address local as well as global health issues. To be able to lead or participate meaningfully in international research collaborations, individual and institutional capacities for research integrity are paramount. Accordingly, this paper concerns itself not only with individuals’ research skills but also with (...) institutional and national policies and governance. Such policies and governance provide an ethical scaffold for the production of knowledge and structure incentives. This paper’s operational definition of research therefore draws from Institute of Medicine’s articulation of health research as an inquiry that aims to produce knowledge about the structure, processes, or effects of personal health services; and from an existing health systems framework. The paper reviews the research regulatory environment and the ethics apparatus in Ghana, and describes a project jointly undertaken by Ghanaian researchers in collaboration with New York University to assess the perceived adequacy of current institutional practices, opportunities, and incentives for promoting RI. (shrink)

Despite negative effects on their health and social lives, many informal carers of people living with dementia claim to be acting in accordance with a moral obligation. Indeed, feelings of failure and shame are commonly reported by those who later give up their caring responsibilities, suggesting a widespread belief that professional dementia care, whether delivered in the person's own home or in an institutional setting, ought always to be a last resort. In this paper, however, I suggest that this common (...) intuition gets things the wrong way around. Adopting a relational egalitarian framework, I argue that the most serious injustices engendered by present‐day dementia care services are contingent on broader societal structures—they can thus be ameliorated relatively easily (if resource intensively) by changing those structures. Informal dementia care, on the other hand, carries similar risks of injustice and is much more resistant to structural reform. While there may be moral obligations to provide informal dementia care in present‐day societies, then, they arise because of the deficiencies of professional care, not the virtues of its informal counterpart. Though we may be far from achieving just care arrangements in most of our societies, we must never lose sight of the fact that, when we engage in morally permitted informal dementia care, we are exercising our last resort. (shrink)

The dispute between the transgender-rights movement and “gender-critical” activists represents a stark division in British public discourse. Although the issues of contention are numerous and require their own philosophical treatment, a core metaphysical concern underlies them. Gender-critical activists, such as Kathleen Stock, tend to argue that recognizing trans women as women requires erasing the category of biological sex. This implies that all trans women are male, and thus recognizing them as women rips female biology from the root of the category (...) “woman.” In this article, I argue that this view is mistaken. As exogenously produced sex characteristics should count toward a person's sex classification, all trans women are female. (shrink)

This chapter argues that the space of the thermal pool is central to Tarkovsky’s exploration of the mystery of sacrifice and the pain of exile in Nostalghia. Spatially, the geometry and textures of the pool are echoed throughout the film’s interiors, in hotel corridors and cathedrals. I propose that we can see Tarkovsky’s aesthetic in Nostalgia as one of overflow. The water that initially fills the pool overflows into nearly every scene, as interiors of houses are flooded in dream-like visions, (...) and the echoing sound of dripping water is omnipresent. Thematically, the film explores the way in which past and present, memory and dream, and the spaces of home and exile flow into each other, using techniques of superimposition. I argue that such overflowing, in both theme and aesthetic, can be productively read in conjunction with Henri Bergson’s theories of duration, in which variegated temporal rhythms continually bleed into each other. Nostalgia’s pool forms a space of becoming, where place and identity is continually in flux. (shrink)

This article takes as its starting point the moral requirement to include persons with serious cognitive impairments in democratic decision‐making. That said, including such persons poses particular practical challenges to effective democratic participation. Nussbaum has set out the most extensive proposals for inclusion based on a model of guardianship, but we find they fall short due to not suitably respecting and facilitating the subjective decision‐making of impaired persons. Instead, we argue for a model of co‐constitution, whereby aides work within a (...) supported decision‐making paradigm to arrive at political choices in collaboration with impaired persons. To flesh out this model, we propose collaboration be based on three ideal types of interaction – expert, Socratic, and deliberative – designed to accommodate differing degrees and types of cognitive impairments. We further argue that the aide should have a relationship of detached professionalism with the impaired person and therefore should not be the person’s carer. Finally, we conclude that this separation be combined with transparent and regular invigilation of the aide’s decision‐making process to best safeguard the process from abuse or error. (shrink)

This article introduces the concept of epistemic positioning to theorize the relationship between identity-based epistemic judgements and the reproduction of social inequalities, including those of gender and ethnicity/race, in the academia. Acts of epistemic positioning entail the evaluation of knowledge claims based on the speaker’s stated or inferred identity. These judgements serve to limit the scope of the knowledge claim, making it more likely speakers will be denied recognition or credit. The four types of epistemic positioning – bounding (reducing a (...) knowledge claim to elements of personal identity), domaining (reducing a knowledge claim to discipline or field associated with identity), non-attribution (using the claim without recognizing the author) and appropriation (presenting the claim as one’s own) – are mutually reinforcing. Given the growing importance of visibility and recognition in the context of increasing competition and insecurity in academic employment, these practices play a role in the ability of underrepresented groups to remain in the academic profession. (shrink)