Appeals to the dignity of people with dementia are widespread in the current literature on dementia care. One influential account of dignity in the wider philosophical and bioethical literature that has remained underexplored in the context of dementia care is that of Martha Nussbaum. This paper critically examines Nussbaum’s account of dignity and aims to determine what moral guidance this account can offer for the provision of care to people with dementia. To that end, first, I identify four possible objections (...) to appeals to dignity in dementia care. These objections are (1) redundancy of the dignity talk, (2) exclusionary implications, (3) reliance on (suspect forms of) speciesism and (4) unclear practical implications. Then, I discuss whether, and to what extent, Nussbaum’s account of dignity can overcome these objections. I argue that Nussbaum’s account, in its original form, struggles to overcome the problem of exclusionary implications and consequently the problem of unclear practical implications. I argue for a modified version of Nussbaum’s account of dignity. I demonstrate that this modified version can better overcome all of the four objections, and it provides relatively clearer moral guidance for the provision of care to people with dementia. The modified version of Nussbaum’s account is predicated on a novel dementia-specific model of flourishing, which draws on Kitwood and Bredin’s empirically informed list of indicators of well-being for people with dementia. (shrink)

I reconsider the concept of dignity in several ways in this article. My primary aim is to move dignity in a more relational direction, drawing on care ethics to do so. After analyzing the power and perils of dignity and tracing its rhetorical, academic, and historical influence, I discuss three interventions that care ethics can make into the dignity discourse. The first intervention involves an understanding of the ways in which care can be dignifying. The second intervention examines whether the (...) capacity to care should be considered a distinguishing moral power – as rationality often is – in light of which humans have dignity. In the third intervention, I cast dignity as a fundamentally relational concept and argue that relationality is constitutive not only of dignity but also of the wider enterprise of normativity. I understand relationality as the condition of connection in which all human beings stand with some other human beings. A thought experiment involving the last person on earth helps to reframe the normative significance of human relatedness. Dignity emerges as fundamentally grounded in relationality. (shrink)

According to one influential view, requirements to elicit consent for medical interventions and other interactions gain their rationale from the respect we owe to each other as autonomous, or self-governing, rational agents. Yet the popular presumption that consent has a central role to play in legitimate intervention extends beyond the domain of cases where autonomous agency is present to cases where far from fully autonomous agents make choices that, as likely as not, are going to be against their own best (...) interest. The question how we should understand the rationale for eliciting consent in this range of ‘non-ideal’ cases is comparatively ill understood. In this paper, I explore the prospects of accounting for consent requirements in such ‘non-ideal’ cases by appealing to a set of agency-based interests; including an interest in playing a meaningful part in joint decisions affecting ourselves and others. (shrink)

I defend the bold claim that self-described speciesists are not really speciesists. Of course, I do not deny that self-described speciesists would assent to generic speciesist claims (e.g. Humans matter more than animals). The conclusion I draw is more nuanced. My claim is that such generic speciesist beliefs are inconsistent with other, more deeply held, beliefs of self-described speciesists. Crucially, once these inconsistencies are made apparent, speciesists will reject the generic speciesist beliefs because they are absurd by the speciesists’ own (...) lights. (shrink)

Societal aging raises challenging ethical questions regarding the just distribution of health care between young and old. This article considers a proposal for age-based rationing of health care, which is based on the prudential life span account of justice between age groups. While important objections have been raised against the prudential life span account, it continues to dominate scholarly debates. This article introduces a new objection, one that develops out of the well-established disability critique of social contract theories. I show (...) the implications of this critique for the prudential life span account and for the special case of age-group justice. The result is that age-based rationing based on the prudential life span approach is not supported, and that the prudential life span approach itself is not the best way to think about allocating health care between age groups. I propose an alternative approach that avoids the disability objection, and consider its implications for specific proposals for age-based rationing of health care. (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)

There is no systematic knowledge about how individuals with Locked-in Syndrome experience their situation. A phenomenology of LIS, in the sense of a description of subjective experience as lived by the ill persons themselves, does not yet exist as an organized endeavor. The present article takes a step in that direction by reviewing various materials and making some suggestions. First-person narratives provide the most important sources, but very few have been discussed. LIS barely appears in bioethics and neuroethics. Research on (...) Quality of Life provides relevant information, one questionnaire study explores the sense of personal continuity in LIS patients, and LIS has been used as a test case of theories in “embodied cognition” and to explore issues in the phenomenology of illness and communication. A systematic phenomenology of LIS would draw on these different areas: while some deal directly with subjective experience, others throw light on its psychological, sociocultural and materials conditions. Such an undertaking can contribute to the improvement of care and QOL, and help inform philosophical questions, such as those concerning the properties that define persons, the conditions of their identity and continuity, or the dynamics of embodiment and intersubjectivity. (shrink)

This paper explores the claim that someone can reasonably consider themselves to be under a duty to respect the autonomy of a person who does not have the capacities normally associated with substantial self-governance.

In this Introduction, I situate the underlying project “Autonomy and Mental Disorder” with reference to current debates on autonomy in moral and political philosophy, and the philosophy of action. I then offer an overview of the individual contributions. More specifically, I begin by identifying three points of convergence in the debates at issue, stating that autonomy is: 1) a fundamentally liberal concept; 2) an agency concept and; 3) incompatible with (severe) mental disorder. Next, I explore, in the context of decisional (...) capacity assessments, the difficulties to reconcile 1) and 2) with 3) which they at the same time seem to imply. Having clarified the centrality of a cogent notion of mental disorder for addressing these difficulties, I comment on three promising lines of inquiry about the nature and scope of autonomy that emerge from the following chapters. (shrink)

Democratic legitimacy is often grounded in proceduralist terms, referring to the ideal of political equality that should be mirrored by fair procedures of decision-making. The paper argues (§1) that the normative commitments embedded in a non-minimalist account of procedural legitimacy are well expressed by the ideal of co-authorship. Against this background, the main goal of the paper is to argue that structural forms of epistemic injustice are detrimental to the overall legitimacy of democratic systems. In §2 I analyse Young’s notion (...) of political powerlessness and claim that in structurally unjust social contexts members of powerless groups often are not properly acknowledged as functioning members of the polity, hence being jeopardized in their ability to develop part of their personal identity. In §III, I define gerrymandering as an example of political disempowerment that involves an epistemic harm for oppressed citizens, namely, to be prejudicially excluded from the community of epistemic trust. My thesis is that being epistemically disempowered has a negative impact on the way in which citizens understand themselves as political actors, since they suffer a lack of social recognition that may impede a proper development of their reflexive agency. In §IV, I discuss the proposal of granting epistemic privilege to members of oppressed groups, given their specific experience of social injustices. I introduce two concerns about this proposal, one morally grounded and one pragmatically oriented. Finally, in §V, I briefly sketch some institutional remedies that can be employed in order to politically fight systemic forms of epistemic injustice. (shrink)

More than two decades after the passage of the Americans with Disabilities Act , people with disabilities continue to live at the margins of American democracy and capitalist society. This persistent exclusion poses a conundrum to political theorists committed to disability rights, multiculturalism, and social justice. Drawing from feminist insights, specifically the work of Nancy Fraser, among others, I examine the necessary conditions for meaningful inclusion to be realized within a deliberative democracy. Using Fraser's concept of “participatory parity” as a (...) proxy for inclusion, I strategize how to overcome informal barriers—economic inequality and misrecognition—that persist even after disabled people are granted the legal right to participate. The analysis concludes that a truly inclusionary and multicultural democracy requires the redistribution of wealth and a more expansive model of political deliberation, one that can recognize unconventional modes of communication through practices of translation. (shrink)

Political philosophy presents a static conception of childhood as a state of lack, a condition where intellectual, physical, and moral capacities are undeveloped. This view, referred to by David Kennedy as the deficit view of childhood, is problematic because it systematically disparages certain universal features of humanity—dependency and growth—and incorrectly characterizes them as features of childhood only. Thus there is a strict separation between childhood and adulthood because adults are characterized as fully autonomous agents who have reached the end of (...) their moral and cognitive development. I argue that this view is mistaken, and limits both the developmental abilities of adults and ongoing moral development within an organized state. I propose that we view dependency as a human condition. By doing so, children and adults form the kind of relationship with one another that encourages the growth and development of our moral sense in both childhood and adulthood. (shrink)

Theories of distributive justice are often criticised for either excluding people with disabilities from the domain of justice altogether, or casting them as deficient in personal attributes. I argue that the capabilities approach to justice is largely immune to these flaws. It has the conceptual resources to locate most of the causes of disadvantage in the interaction between a person and her environment and in doing so can characterise the disadvantages of disability in a way that avoids the imputation of (...) natural deficiency. However, I also argue that the capabilities approach cannot accommodate some of the stronger claims advanced by some disability scholars. No plausible capabilities approach can guarantee that social change will always be the just or fair remedy for disadvantage, and there is a small number of severe cases of disability where capability shortfalls will be attributed to the person’s ‘deficient’ physical and mental impairments. (shrink)

Martha Nussbaum has sought to establish the significance of disability for liberal theories of justice. She proposes that human dignity can serve as the basis of an entitlement to a set of capabilities that all human beings either possess or have the potential to develop. This article considers whether the concept of human dignity will serve as the justification for basic human capabilities in accounting for the demands of justice for people with profound learning difficulties and disabilities. It examines the (...) relationship between dignity and capabilities, suggesting that Nussbaum fails to distinguish between several conceptions of human dignity, whilst also identifying one of these conceptions as coming close to meeting several of her demands. It is difficult enough, however, to show how dignity is related to just one of our basic entitlements, and even that requires more than the resources available in Nussbaum's approach. (shrink)

The ageing populations of the Western world present a wide range of economic, social, and cultural implications, and given the challenges posed by deteriorating maintenance ratios, the scenario is somewhat worrying. In this paper, I investigate whether Martha C. Nussbaum's capabilities approach could secure dignity for older people in long‐term care, despite the per capita decreases in resources. My key research question asks, ‘What implications does Nussbaum's list of central human capabilities have for practical social care?’ My methodology combines Nussbaum's (...) list with ethnographic data gathered from a Finnish sheltered home for older people. On the basis of this study, it seems that the capabilities approach is a plausible framework for the ethics of care because it highlights differences in the ability to function and thus differences in opportunities to pursue a good life. The ideas presented in this article could assist social policy planners and executives in creating policies and practices that help old people to maintain their dignity until the end of their days. (shrink)

Political practices often aim to reach valuable outcomes through democratic processes. However, philosophical considerations and democratic deliberations sometimes support different conclusions about what a valuable outcome would be. This paper contributes to a research agenda that aims to reconcile recommendations that follow from these different bases. The setting for this research agenda is capabilitarian. It affirms the idea that what we should distribute are substantive freedoms to be and do things that people have reason to value. Disagreements about these valuable (...) outcomes become particularly problematic in urgent situations such as pandemics, floods, and wildfires. These situations are urgent since they are time-sensitive and involve an impending loss of well-being. A method of compromise would help mitigate losses of well-being while respecting the aim of reaching valuable outcomes through democratic processes. I thus offer an equitable and decisive method of compromise that helps integrate philosophical considerations with democratic deliberations. (shrink)

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is being used to argue for wider recognition of the legal capacity of people with mental disabilities. This raises a question about the implications of the Convention for attributions of criminal responsibility. The present paper works towards an answer by analysing the relationship between legal capacity in relation to personal decisions and criminal acts. Its central argument is that because moral and political considerations play an essential role in (...) setting the relevant standards, legal capacity in the context of personal decisions and criminal acts should not be thought of as two sides of the same coin. The implications of particular moral or political norms are likely to be different in these two legal contexts, and this may justify asymmetries in the relevant standards for legal capacity. However, the analysis highlights a fundamental question about how much weight moral or political considerations should be given in setting these standards, and this is used to frame a challenge to those calling for significantly wider recognition of the legal capacity of people with mental disabilities on the basis of the Convention. (shrink)

New technologies such as smart sensors improve rehabilitation processes and thereby increase older adults’ capabilities to participate in social life, leading to direct physical and mental health benefits. Wearable smart sensors for home use have the additional advantage of monitoring day-to-day activities and thereby identifying rehabilitation progress and needs. However, identifying and selecting rehabilitation priorities is ethically challenging because physicians, therapists, and caregivers may impose their own personal values leading to paternalism. Therefore, we develop a discussion template consisting of a (...) series of adaptable questions for the patient–physician encounter based on the capability approach. The goal is to improve geriatric rehabilitation and thereby increase participation in social life and well-being. To achieve this goal, we first analyzed what is considered important for participation on basis of the capability approach, human rights, and ethics of care. Second, we conducted an ethical analysis of each of the four identified dimensions of participation: political, economic, socio-cultural, and care. To improve compliance with rehabilitation measures, health professionals must align rehabilitation measures in an open dialogue with the patient’s aspiration for participation in each dimension. A discussion template based on the capability approach allows for a proactive approach in patient information and stimulates a critical assessment of treatment alternatives while reducing the risk of imposing personal values. (shrink)

The idea that animals should have the right to vote sounds preposterous. Accordingly, most authors who have touched on the issue dismiss it in few words as obvi.

One central and unfortunately unavoidable characteristic of the aging process is its association with chronic physiological deterioration. Frailty, cognitive impairment, and physical conditions such as cardiovascular disease and vision and hearing loss are more frequent in this phase of life, and these conditions translate into an increasing need for care and support of multiple kinds. In traditional bioethical scholarship, these distinctive features of aging have been examined predominantly through a health‐focused lens. My main contention in this essay, however, is that (...) viewing aging within bioethics as primarily a health problem, to be addressed through frameworks for decision‐making or for resource allocation, is inadequate. My aim is to consider how the health conditions associated with aging affect older people’s lives in a much more expansive way than has typically been acknowledged. Just as importantly, I intend to show how shifting our bioethical imagination in this way raises different and challenging questions about what a good life in late life consists in and about what is owed to older people, in their personal and social lives, as a matter of justice. (shrink)

This paper outlines the potential and necessity of the development of assistive technologies for people with intellectual disabilities. We analyse a policy recommendation designed to determine the contents of a basic health package supplied by the state, known as the Dunning Funnel. We contend that the Dunning Funnel is a useful methodology, but is weakened by a potentially relativistic understanding of “necessity” in relation to the requirements of people with IDs. We remedy this defect by using the capabilities approach as (...) outlined by Martha Nussbaum. We argue that this approach provides a strong normative case for ensuring that communities provide help to people with IDs, if those communities are to achieve a minimal standard of justice. However, the capabilities approach does not offer much specific guidance on how AT ought to be distributed, nor does it offer guidance on risks, like the bottomless pit problem. We propose that the Dunning Funnel used in combination with the capabilities approach will provide a suitable heuristic for determining the distribution of AT in a basic health package. (shrink)

The concept of service found in Christian theism and related religious perspectives offers robust support for a political defense of nonhuman animal rights, both in the eschaton and in the present state. By adapting the political theory defended by Donaldson and Kymlicka to contemporary theological models of the afterlife and of human agency, I defend a picture of heaven as a harmoniously structured society where humans are the functional leaders of a multifaceted, interspecies citizenry. Consequently, orthodox religious believers (concerned with (...) promoting God’s will “on Earth as it is in Heaven”) have a duty to promote and protect the interests of nonhuman creatures in the present, premortem state. (shrink)

This Dissertation argues for a care-centrically grounded account of relational personhood and widely realized diachronic personal identity. The moral distinction between persons and non-persons is arguably one of the most salient ethical lines we can draw since many of our most fundamental rights are delineated via the bounds of personhood. The problem with drawing such morally salient lines is that the orthodox, rationalistic definition of personhood, which is widespread within philosophical, medical, and colloquial spheres, excludes, and thereby de-personifies, a large (...) number and a great variety of human beings such as neonates, young children, the elderly who suffer from dementia, individuals with severe cognitive disabilities, and patients in vegetative states. The reconceptualization of personhood necessary for a more inclusive definition ought to originate with an appropriate moral grounding. To this end, this Dissertation grounds the notion of personhood in the care ethical sphere, thereby emphasizing the role of care relations in the maintenance of the moral consideration of vulnerable individuals. This Dissertation argues that grounding the concept of a person in care relations entails a relational account of personhood, which, along with the insights of the Extended Mind and Social Manifestation Theses, leads to an extended and externalized understanding of diachronic identity, which allows fragile people to be held in their personal identities even if they themselves lack the capacities usually associated with moral personhood. As we trace a person’s identity through time, we track the various relational properties, which constitute personal narratives and thus act as a glue that binds such dynamic and often unique properties into stable, trackable narratives. Since care relations are morally relevant on a care-centric account of personhood, what is lost in cases where such care relating ceases is not merely of sentimental value, but of great moral importance as well. Morally meaningful care relations are not replaceable, and, by extension, neither are the narratives that are constituted by such unique and irreplaceable instances of relating. This Dissertation argues that the constitutive care relational nature of personal narratives makes such narratives irreplaceable and is precisely what makes persons so morally precious. (shrink)

During recent decades, theories of mutual recognition have been intensively debated in social philosophy. According to one of the main theorists in the field, Axel Honneth, the entire social world may be based on interpersonal recognition. Our aim is to study what it would take that residents in long-term care would become adequately interpersonally recognized. We also examine who could be seen as bearing the responsibility for providing such recognition. In this paper, we distinguish ten aspects of recognition. We suggest (...) that in order to support residents’ dignity, long-term care should be arranged in a way that preserves residents’ full personhood regardless of their cognitive or other abilities: the mere fact that they are human persons is a ground for recognition as a person. But further, in good care residents’ personal characteristics and residents’ ties to significant others are also recognized to enable them to feel loved, esteemed and respected. (shrink)

It is now broadly accepted that disability is a concept infused with both descriptive and evaluative meaning, such that invoking the concept of disability necessarily involves making judgements of moral value as well as describing certain facts about individuals. This paper aims to map the complex terrain that shapes our current understandings of disability by outlining five distinct ‘discourses of disability’. It is shown how the similarities and differences between the discourses hinge on different ways of making sense of the (...) descriptive and evaluative dimensions of the concept, and the relationships between these dimensions. The paper concludes by considering the specific implications that these different ways of elucidating the concept of disability might have for the provision of clinical ethics support, both in terms of shaping ethical decision-making relating to people with disabilities and in terms of framing the process of providing clinical ethics support itself. (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)

Cognitively disabled persons routinely face legal and structural barriers to democratic participation. However, as this paper argues, theoretical accounts of democratic participation may also undermine disabled persons’ abilities to participate in and contribute to the political process. I seek to advance an account of participatory parity for cognitively disabled persons, arguing that participatory parity requires access to deliberative spaces, in addition to material and intersubjective conditions. Building the idea of support, or respect for the expressed preferences of the disabled person, (...) into democratic theory, is a prerequisite for inclusive democratic spaces. In line with this emphasis on support, I suggest that the characterization of deliberative interventions as ‘reasonable speech acts’ hinders participatory parity for cognitively disabled persons. I therefore propose a series of enabling strategies intended to expand philosophical understandings of deliberation beyond reasonable speech acts. (shrink)

This thesis focuses on what I call the question of exclusion. This question, I argue, is one that poses serious challenges to social contract approaches to justice and political legitimacy. In an intuitive way, the exclusion of some individuals seems to be a corollary of the social contractualist approach, which ascribes justice or legitimacy to a social arrangement insofar as it can be regarded as the product of the (actual – expressed or tacit – or hypothetical) consent of specified parties. (...) Consequently, this approach excludes those whose consent is not required in order to view an arrangement as legitimate or just. Given the enormous and continuing influence of John Rawls’s social contract theory, I take the Rawlsian view as my primary focus, concentrating on the way in which the question of exclusion raises challenges for Rawlsian contractualism. According to Rawls’s theory, those who participate in the hypothetical contract and to whom political power ought to be justifiable are reasonable and rational. They are reasonable in the sense that they understand and are willing to comply with the requirements of justice and they are rational in that they have the capacity to form, revise, and pursue a conception of the good. This gives rise to two categories of exclusion. In the first part of the thesis, I examine the exclusion of those who will develop the two moral powers sufficiently only if those who are represented in the social contract act (or refrain from acting) in certain ways. This category includes children, foetuses, and unreasonable citizens. Intuitively, justice issues in requirements in at least some of these cases, but it is hard to make sense of this on the Rawlsian approach. In the second part of the thesis, I address the question of exclusion regarding those who will never develop the two moral powers to the requisite degree, such as individuals with severe cognitive disabilities and non-human animals. Again, intuitively, justice issues in requirements here, but their justification is not clear on the contractualist approach. My conclusion is threefold. First, I argue that the problems the question of exclusion poses cannot be addressed by a single solution. Second, I safeguard Rawlsian contractualism by showing how each problem can be resolved. Third, I offer policy-prescriptions on a number of issues, such as education, abortion, and the criminal justice system. (shrink)

As a result of vocal autism activists pushing against traditional views of autism, there is a bilateral debate that reflects a deeper philosophical divide between medical and social definitions of disability. Both sides seek to determine the manner in which autistics and their communities view autism, and thus influence the manner in which cures or treatments are sought, dispensed and taken up. Through an investigation of this debate, this project will explore the practical benefits and ethical obligations of accommodating autistic (...) differences. One side of this debate, which we will call the cure theory approach, seeks treatments that will eradicate or at least minimize autistic symptoms. The philosophical assertion that lies behind this objective is that autistic differences, particularly disruptive autistic differences, ought to be removed. The other side of the debate, which we will call the neurodiverse perspective, seeks to define autism as neurological difference, that is relationally determined, rather than a disorder or a syndrome. The neurodiversity movement recommends educating autistics and their communities regarding how to fully accommodate autistic differences. The underlying philosophical commitment of the neurodiverse perspective is that it is in the best interests of autistics and their communities to accommodate differences, rather than seek treatments that encourage conformity. I will argue that these two sides are not mutually exclusive. Through a synthesis of the neurodiverse and cure theory points of view I will enable the development of a method, which facilitates justice for autistics and their communities. This synthesis garners the maximum capabilities that the expression of autistic differences can offer, and maintains the freedom for all community members to actualize their capabilities. (shrink)