Many social practices treat citizens with cognitive disabilities differently from their nondisabled peers. Does John Rawls's theory of justice imply that we have different duties of justice to citizens whenever they are labeled with cognitive disabilities? Some theorists have claimed that the needs of the cognitively disabled do not raise issues of justice for Rawls. I claim that it is premature to reject Rawlsian contractualism. Rawlsians should regard all citizens as moral persons provided they have the potential for developing the (...) two moral powers. I claim that every citizen requires specific Enabling Conditions to develop and exercise the two moral powers. Structuring basic social institutions to deny some citizens the Enabling Conditions is unjust because it blocks their developmental pathways toward becoming fully cooperating members of society. Hence, we have a duty of justice to provide citizens labeled with cognitive disabilities with the Enabling Conditions they require until they become fully cooperating members of society. (shrink)

As the global prevalence of Alzheimer’s disease increases, the need to understand family caregiving becomes increasingly pressing. I argue that there is an under-recognized form of caregiving for people with early to mid-stage Alzheimer’s disease. This type of caregiving involves, roughly, helping people reason through their values. It arises along with the loss of the capacity for executive functioning. Moreover, it is prone to give rise to moral distress, which is an under-recognized vulnerability in family caregiving. Categories of family caregiving (...) thus need to be expanded, and moral distress needs to be recognized not only in the context of nursing. (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)

The character and extent of disabilities, especially cognitive disability, have posed significance problems for existing moral theories. Certain philosophers have even questioned the moral personhood of people with disabilities and have argued that people with profound cognitive impairments should not be granted the same moral status as those who are cognitively able-bodied. This paper proposes an alternative understanding of moral personhood as relational rather than individuated. This relational moral personhood finds its foundation in the clinical practice and psychoanalysis of Julia (...) Kristeva and the hermeneutic narrative identity of Paul Ricoeur. One consequence of this relational personhood is a new understanding of moral status through narrative co-authorship rather than intellectual or social capacity. Another consequence is a refiguration of narrative identity as narrative interdependence. (shrink)

As the world population is rapidly aging, stakeholders must address the care of the elderly with great concern. Also, loss of dignity is often associated with aging due to dementia, mobility problems and diminished functional autonomy. However, dignity is a polysemic term that is deemed useless by some ethicists. To counter this claim, we propose four concepts to define it better and make use accurately of this notion. These are human dignity, dignity of identity, dignities of excellence and attributed dignities. (...) Finally, we explain the importance of solicitude and human dignity in the care of the elderly. This will ensure the respect, friendship and dignity of the elderly in providing geriatric ethical care. (shrink)

Dance, as aesthetic self-expression, is a unique arts-based program that combines the physical benefits of exercise with psychosocial therapeutic benefits. While dance has also been shown to support empowerment, meaningful self-expression, and pleasurable experience, it is rarely adopted to support these aspects of engagement in the context of dementia care. The instrumental reduction of dance to its application as a therapeutic tool can be traced to the contemporary movement towards cognitive science with an emphasis on embodied cognition. This has effectively (...) elided a consideration of how the body itself, separate and apart from cognition, could be a source of intelligibility, inventiveness, and creativity. We argue for the need to broaden the therapeutic model of dance to more fully support embodied and creative self-expression by persons living with dementia. To achieve this, we explore how a relational model of citizenship that recognizes corporeality and relationality as fundamental to human existence brings a new and critical dimension to understanding the importance of dance in the context of dementia. Drawing on this model, we articulate a new kind of ethic characterized by a pre-reflective intercorporeal sensibility that requires the mobilization of public structures and practices to cultivate a relational environment for individuals living with dementia that supports human flourishing. (shrink)

Given that many people with disabilities have been excluded from political deliberation and subjected to infantilizing and degrading treatment from others, many members of the disability rights movement are understandably critical of policies and practices that speak on behalf of people with disabilities and presume to know what is really in their best interest. Yet, this analysis argues that a general principle of anti-paternalism is not desirable for disability politics. In particular, people with cognitive disabilities are sometimes unable to make (...) important decisions by themselves, and may require assistance from family members or more cognitively able and verbally fluent citizens to make their political voices and choices heard. Drawing from John Locke and Alasdair MacIntyre, this article reconsiders the relationship between paternalism and autonomy, suggesting that autonomous decisionmaking and expression are best thought of as collaborative processes undertaken between people with a range of capacities. (shrink)

Agency is talked about by many as something that people living with dementia lose, once they've lost much else—autonomy, identity, and privacy, among other things. While the language of loss may capture some of what transpires in dementia, it can obscure how people living with dementia and their loved ones share agency through sharing capacities for memory, language, and decision‐making. We suggest that one consequence of adopting a framework of loss is that it makes the default response to changes in (...) agency the substitution of a family member's agency for the purported lost agency of someone living with dementia. We argue for an alternative framework in which sharing agency is recognized as a central feature of living with dementia. Building on the work of relational theorists, we argue for the value of thinking about agency in dementia as fundamentally shared, and explore potential implications for treatment, caregiver support, and building dementia‐friendly environments. (shrink)

Resident-to-resident aggression is quite prevalent in long-term care settings. Within popular and empirical accounts, this form of aggression is most commonly attributed to the actions of an aberrant individual living with dementia characterized as the “violent resident.” It is often a medical diagnosis of dementia that is highlighted as the ultimate cause of aggression. This neglects the fact that acts of aggression are influenced by broader structural conditions. This has ethical implications in that the emphasis on individual aberration informs public (...) policy strategies for prevention with a focus on restricting the freedom of individuals using behavioural modification, drugs, or other restraints with the intent to protect others from harm. A more ethical approach requires attention to the structural conditions of long-term care that both foster aggression and constrain prevention efforts. To this end, we turn to a model of relational citizenship that offers a theory of embodied selfhood and relationality as essential to human dignity, thus entailing human rights protections. The application of an ethic based on this model offers a more holistic prevention strategy for resident-to-resident aggression by drawing attention to the critical need and obligation to promote human flourishing through system level efforts. (shrink)

As the number of people affected by dementia increases rapidly, dementia has been transformed into an epidemic which endangers global health and wealth, and many populations are now living in what Jain terms a time of prognosis, in fear of the disease. Through its strong association with ageing and memory loss, dementia is conceived of as a linear decline into loss of self and death, and those with dementia as other. More significantly, imagined as a threat that signifies both a (...) loss of able-bodied workforce and a large population dependent on care and support, dementia inevitably feeds into the ‘crisis-of-care’ narrative that is prominent in many ageing societies. With one of the fastest ageing populations in the world, and an extremely low birth rate, the dementia prognosis is particularly acute in Japan and dementia is strongly linked to the idea of a ‘care crisis’. This situation has produced an increasing number of cultural representations of dementia and care and this paper considers three of these cultural texts, all rooted in the historical and cultural contexts in which they were produced: the novel The Twilight Years; the film Memories of Tomorrow; and the comic book Pecoross’ Mother and Her Days. The analysis concentrates upon their representations of care, seeing this as a space where the ethical relationship between self and other can be negotiated and where time with dementia can be imagined and re-imagined. The analysis of these texts from a feminist ethics perspective demonstrates the potential of popular and creative representations to interrogate and potentially expand the meanings of dementia, ageing and living in prognosis. (shrink)

Most philosophical accounts of human rights accept that all persons have human rights. Typically, ‘personhood’ is understood as unitary and binary. It is unitary because there is generally supposed to be a single threshold property required for personhood. It is binary because it is all-or-nothing: you are either a person or you are not. A difficulty with binary views is that there will typically be subjects, like children and those with dementia, who do not meet the threshold, and so who (...) are not persons with human rights, on these accounts. It is consequently unclear how we ought to treat these subjects. This is the problem of marginal cases. I argue that we cannot resolve the problem of marginal cases if we accept a unitary, binary view of personhood. Instead, I develop a new non-binary personhood account of human rights, and defend two main claims. First, there are many, scalar properties, the having of which are conducive to personhood. Second, different subjects have different human rights depending on which of these properties they have, and what threats apply to them. On my view, and contra most existing accounts, most marginal cases have some degree of personhood and are entitled to some human rights. (shrink)