Merleau-Ponty claims that the idea of objective knowledge is supported by "our reveries." My aim in this paper is to explore this argument with respect to the idea of health. As a case study, I focus on bioethical issues surrounding return of results of incidental variants with respect to the use of genetic and genomic screening technologies (GSTs) in newborn and pediatric contexts. Drawing on a range of Merleau-Ponty’s texts, I argue that this case suggests the modern idea of health (...) to turn largely on the desire for control over one’s fate. More specifically, this is a desire for control aimed at assuring that the meaning of one’s life will stay the same as indexed by one’s ability expectations. I term this a desire for existential homeostasis. I further contend that the desire for existential homeostasis is underwritten by multiple sorts of privilege and, insofar as it informs health as a reverie, it is a desire that is particularly apt to contribute to and maintain injustice in both theory and practice. (shrink)

Maurice Merleau-Ponty’s work draws our attention to how the body is always our way of having a world and never merely a thing in the world. Our conception of the body must take account of our cultures, our historically located sciences, and our interpersonal relations and cannot reduce the body to a biological given. Normality, Abnormality, and Pathology in Merleau-Ponty takes up Merleau-Ponty’s phenomenology of the body to explore the ideas of normality, abnormality, and pathology. Focusing on the lived experiences (...) of various styles of embodiment, the book challenges our usual conceptions of normality and abnormality and shows how seemingly objective scientific research, such as the study of pathological symptoms, is inadequate to the phenomena it purports to comprehend. The book offers new insights into our understandings of health and illness, ability and disability, and the scientific and cultural practices that both enable and limit our capacity for diverse experiences. (shrink)

Dependency is fundamental to caring relationships. However, given that dependency implies asymmetry, it also brings moral problems for nursing. In nursing theory and theories of care, dependency tends to be framed as a problem of self‐determination—a tendency that is mirrored in contemporary policy and practice. This paper argues that this problem frame is too narrow. The aim of the paper is to articulate additional theoretical ‘problem frames’ for dependency and to increase our understanding of how dependency can be navigated in (...) practices of long‐term care. It does so by way of an empirical ethical analysis of how care professionals tackle the problem of dependency in group homes for people with intellectual disabilities. The paper refers to these practices of mitigating the problem of dependency as ‘dependency work’, a phrase borrowed from Eva Kittay. The analysis of dependency work suggests that for care professionals, dependency is a threefold problem: one of self‐determination, one of parity and one of self‐worth. These findings suggest that patient autonomy cannot be a full solution to the problem of dependency in long‐term care relations. But they also show that dependency as such is not a problem that can be solved, as attempts to mitigate it only serve to tighten the dependency relationship further. This is the paradox of dependency work. (shrink)

The rapidly expanding aging population presents an urgent global challenge cutting through just about every dimension of worldly life, including the social, political, cultural, and economic. Developing innovations in health and assistive technology (AT) are poised to support effective and sustainable health care in the face of this challenge, yet there is scant (but growing) discussion of the ethical issues surrounding AT for older persons with dementia. Demands for ethical frameworks that can respond to frontline dilemmas regarding AT development and (...) provision, and how the needs of aging persons themselves are defined throughout this development process, are increasing. This article suggests that fulfilling the promises of AT to provide effective and ethically informed solutions may demand shifting away from standard bioethical analyses that centralize the principle of respect for autonomy. An autonomy-centric paradigm is dubiously equipped to theorize the foundational ethical issues in dementia care and to effectively guide AT development and implementation. An agency-centered approach to dementia care, which could engage more adaptively with the perspectives and choices of older persons themselves while offering strong support to AT research and stakeholders, may offer an attractive alternative. (shrink)

A growing epidemic of chronic illness in working populations contributes to a negative spiral of work and organizational outcomes including increased absenteeism, prolonged disability or illness claims, early work termination, and non-voluntary unemployment. Chronic illness, characterized by fluctuating trends in clinical and embodied experience along a prolonged time course, is intersubjectively experienced within a social context, and variably responded to and managed within and between organizations and countries. Drawing from global health, we discuss chronic illness experience and organizations as context (...) for chronic illness experience. We then propose a model of ‘organizational caregiving,’ highlighting how invested relational understanding, attitude, intent, and acts of care can enrich the work and organizational experiences of employees with chronic illness. (shrink)

This paper examines the prevalence of the ideal of “independence” in intellectual disability care in the Netherlands. It responds to a number of scholars who have interrogated this ideal through the lens of Michel Foucault’s vocabulary of governmentality. Such analyses hold that the goal of “becoming independent” subjects people with intellectual disabilities to various constraints and limitations that ensure their continued oppression. As a result, these authors contend, the commitment to the ideal of “independence” – the “ethic of autonomy” – (...) actually threatens to become an obstacle to flourishing in the group home. This paper offers an alternative analysis. It does so by drawing on a case study taken from an ethnographic study on group home life in the Netherlands. Briefly put, the disagreement stems from differing conceptualizations of moral life. Put in the vocabulary of moral anthropologist Cheryl Mattingly, the authors propose to approach the group home more from a “first-person” perspective rather than chiefly from a “third-person” perspective. They then draw on Mattingly to cast the group home as a “moral laboratory” in which the ethic of autonomy is not just reproduced but also enacted, and in which the terms of (in)dependence constantly get renegotiated in practice. What emerges is not only a new perspective on the workings of the “ethic of autonomy” in the group home, but also an argument about the possible limitations of the vocabulary of governmentality for analysing care practices. (shrink)

Care ethics emphasizes responsibility as a key element for caring practices. Responsibilities to care are taken by certain groups of people, making caring practices into moral and political practices in which responsibilities are assigned, assumed, or implicitly expected, as well as deflected. Despite this attention for social practices of distribution and its unequal result, making certain groups of people the recipient of more caring responsibilities than others, the passive aspect of a caring responsibility has been underexposed by care ethics. By (...) drawing upon the work of the French phenomenologist Jean-Luc Marion, a care ethical conceptualization of responsibility can by enriched, by scrutinizing how responsibility is literally a response to something else. This paper starts with a vignette of an everyday situation of professional care. After that the current body of care ethical literature on responsibility is presented, followed by Marion’s phenomenology of givenness, using his analysis of Caravaggio’s painting The Calling of St. Matthew and resulting in his redefinition of responsibility. In the next section we present a table in which we juxtapose four distinct paradigms of responsibility, which we will describe briefly. The final section consists of an exploration of the paradigms by an analysis of the vignette and results in a conclusion concerning what Marion’s view has to offer to care ethics with regard to responsibility. (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)

Participatory action research (PAR) is a form of community-driven qualitative research which aims to collaboratively take action to improve participants’ lives. This is generally achieved through cognitive, reflexive learning cycles, whereby people ultimately enhance their wellbeing. This approach builds on two assumptions: (1) participants are able to reflect on and prioritize difficulties they face; (2) collective impetus and action are progressively achieved, ultimately leading to increased wellbeing. This article complicates these assumptions by analyzing a two-year PAR project with mothers of (...) disabled children from a South African urban settlement. Participant observation notes, interviews, and a group discussion served as primary data. We found that mothers’ severe psychological stress and the strong intersectionality of their daily challenges hampered participation. Consequently, mothers considered the project ‘inactionable’. Yet, many women quickly started expressing important individual and collective wellbeing transformations. To understand these ‘unlikely’ transformations, a feminist relational account, in particular, that of relational wellbeing, proves essential. We reflect on the consequences of these findings for the dominant PAR methodology and operationalization, and propose to sensitize future PAR with marginalized women by employing relational wellbeing as an overarching ontological awareness. (shrink)

An authoethnography explores the lived experiences of patients being in control and self-managing their chronic illness among their families and friends. Findings show that the current health discourse narrows down people to mere patients and gives rise to tensions. This article indicates that people with one or several chronic illnesses or disabilities are first of all full citizens with needs, values, and drives seeking a meaningful life. Fair possibilities ought to exist to satisfy their needs to belong, to care for (...) and to matter to others since these constitute an essential aspect of being human. (shrink)

Martin Heidegger’s existential account of care in _Being and Time_ (2010) provides us with an opportunity to reimagine what the proper theoretical grounding of an ethic of care might be. Heidegger’s account of care serves to deconstruct the two primary foundations that an ethic of care is often based upon. Namely, that we are inevitably interdependent upon one another and/or possess an innate disposition to care for fellow humans in need. Heidegger’s account reveals that both positions are founded upon an (...) ontic (meaning factual existence), as opposed to an ontological (which refers to the nature of being), understanding of care. The distinctions between an ontic and ontological understanding of care are significant. Yet, I maintain that they are not completely incompatible. Both Heidegger and care ethicists contend that our existence with others is understood through a relational ontology. Furthermore, there are certain ontological structures from Heidegger which resonate with an ethic of care. Two key existential structures are leaping-ahead and being-guilty. These existential structures are latent in care ethics, and by explicitly revealing them I reinforce the connection between Heidegger’s account and care theory. Lastly, I develop the theoretical foundations of care ethics by proposing an existential ethic of care. (shrink)

Für eine ethische Beurteilung des Einsatzes moderner Informations- und Kommunikationstechnologien sowie autonomer Assistenzsysteme im Berufsfeld Pflege empfiehlt es sich zunächst, empirische Informationen über Wirkungen und Folgen dieser Technologien aus unterschiedlichen Perspektiven einzuholen. Allerdings ist die Studienlage erweiterungsbedürftig. Auch wenn die Diskussion eher tentativ auf der Grundlage von vorsichtigen Annahmen geführt werden kann, so schälen sich dennoch in der internationalen pflegewissenschaftlichen Debatte sehr ambivalente Bewertungen heraus. Eine der Kontroversen betrifft die Frage, inwieweit und in welchem Maße Pflege als Beziehungsarbeit technisch substituiert (...) werden kann oder darf; inwieweit sich dadurch nicht nur Strukturen der Wahrnehmung und Aufmerksamkeit wandeln, sondern soziokulturelle Bedingungen von Hilfe, Unterstützung und Befähigung grundlegend verändern. Assistenztechnologien werden nicht nur das widersprüchliche Verhältnis von Sicherheit, Überwachung, Kontrolle und Entmündigung verschärfen. Unter dem Einfluss moderner Informationstechnologien wird sich auch der Status professionellen Wissens wandeln. Von erheblichem Gewicht ist schließlich, ob möglicherweise sozialanthropologische Grundannahmen wie beispielsweise die der leiblichen Responsivität und personalen Authentizität obsolet werden. Die ethische Beurteilung erfolgt aus verschiedenen Bewertungsperspektiven. Aus deontologischer Sicht hat sich die Akzeptanz neuer Technologien daran zu bemessen, inwieweit deren Wirkungen mit normativen Ansprüchen und Integritätsinteressen betroffener Personen vereinbar sind. Aus Sicht einer Ethics of Care wird es darum gehen, inwieweit durch den Einsatz von Assistenztechnologien nicht nur psychophysische Entlastungen, nicht nur bessere Informationsflüsse bewirkt werden können. Nicht weniger bedeutsam ist die Frage, ob soziale Netzwerke entwickelt, Möglichkeiten der Teilhabe verbessert und kreative Potenziale der Selbstorganisation und der Selbstwirksamkeit gefördert werden können. (shrink)

Für eine ethische Beurteilung des Einsatzes moderner Informations- und Kommunikationstechnologien sowie autonomer Assistenzsysteme im Berufsfeld Pflege empfiehlt es sich zunächst, empirische Informationen über Wirkungen und Folgen dieser Technologien aus unterschiedlichen Perspektiven einzuholen. Allerdings ist die Studienlage erweiterungsbedürftig. Auch wenn die Diskussion eher tentativ auf der Grundlage von vorsichtigen Annahmen geführt werden kann, so schälen sich dennoch in der internationalen pflegewissenschaftlichen Debatte sehr ambivalente Bewertungen heraus. Eine der Kontroversen betrifft die Frage, inwieweit und in welchem Maße Pflege als Beziehungsarbeit technisch substituiert (...) werden kann oder darf; inwieweit sich dadurch nicht nur Strukturen der Wahrnehmung und Aufmerksamkeit wandeln, sondern soziokulturelle Bedingungen von Hilfe, Unterstützung und Befähigung grundlegend verändern. Assistenztechnologien werden nicht nur das widersprüchliche Verhältnis von Sicherheit, Überwachung, Kontrolle und Entmündigung verschärfen. Unter dem Einfluss moderner Informationstechnologien wird sich auch der Status professionellen Wissens wandeln. Von erheblichem Gewicht ist schließlich, ob möglicherweise sozialanthropologische Grundannahmen wie beispielsweise die der leiblichen Responsivität und personalen Authentizität obsolet werden. Die ethische Beurteilung erfolgt aus verschiedenen Bewertungsperspektiven. Aus deontologischer Sicht hat sich die Akzeptanz neuer Technologien daran zu bemessen, inwieweit deren Wirkungen mit normativen Ansprüchen und Integritätsinteressen (Selbstbestimmung, Sicherheit) betroffener Personen vereinbar sind. Aus Sicht einer Ethics of Care wird es darum gehen, inwieweit durch den Einsatz von Assistenztechnologien nicht nur psychophysische Entlastungen (Pflegepersonal, Patient*innen, ältere Menschen), nicht nur bessere Informationsflüsse bewirkt werden können. Nicht weniger bedeutsam ist die Frage, ob soziale Netzwerke entwickelt, Möglichkeiten der Teilhabe verbessert und kreative Potenziale der Selbstorganisation und der Selbstwirksamkeit gefördert werden können. (shrink)

The article addresses Jürgen Habermas’ theory of communicative action, which offers very productive tools for analysing disability. The Habermasian division of social reality helps examine positive and negative effects of tensions between the lifeworld of a person with disability and the system. By exploring such an individual's communicative action, one can obtain an insight into his/her validity claims and disruptions in the communication process and self‐understandings inscribed in group narratives. The study reported in the article used in‐depth interviews, which narratively (...) reveal the experiences of a person with disability in family, education, sports and labour. The key findings are, first, that the rationalization of lifeworlds of people with disability increases while processes in which they are colonized by the system intensify; second, that education and family are significant factors in the raising of validity claims; and third, that validity claims as tools of verbal communication should be augmented with arguments from non‐verbal language (e.g. gesture, empathy). (shrink)

This article argues that supported decision making is ideal for people with dynamic cognitive and functional impairments that place them at the margins of autonomy. First, we argue that guardianship and similar surrogate decision-making frameworks may be inappropriate for people with dynamic impairments. Second, we provide a conceptual foundation for supported decision making for individuals with dynamic impairments, which integrates the social model of disability with relational accounts of autonomy. Third, we propose a three-step model that specifies the necessary conditions (...) of supported decision making: identifying domains for support; identifying kinds of supports; and reaching a mutually acceptable and formal agreement. Finally, we identify a series of challenges for supported decision making, provide preliminary responses, and highlight avenues for future bioethics research. (shrink)

This article explores the relationship between hermeneutical injustice in religious settings and religious trauma and spiritual violence. In it I characterize a form of hermeneutical injustice that arises when experiences are obscured from collective understanding by normatively laden concepts, and I argue that this form of HI often plays a central role in cases of religious trauma and spiritual violence, even those involving children. In section I, I introduce the reader to the phenomena of religious trauma and spiritual violence. In (...) section II, I describe the role normatively laden concepts play in shaping our social experience. I then elucidate how they can contribute to HI. In section III, I provide a brief overview of the history of some significant identity prejudices in the history of Christianity and argue that children can properly be understood as victims of HI within some religious communities. I then return in section IV to the examples of religious trauma and spiritual violence offered throughout the article and demonstrate that HI plays an important causal role in each of them. HIs sometimes constitute spiritual and religious harms; at other times they create an epistemic environment conducive to spiritual abuse. (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)

Background:The management of challenging behaviours in inpatient with intellectual disability and/or autism spectrum disorders can lead to an escalation of control measures. In these complex situations where patients have an intellectual disability/autism spectrum disorder accompanied by a psychiatric comorbidity, the experiences of caregivers related to the crisis management have rarely been studied.Purpose:This study examined the moral experiences of caregivers related to challenging behaviours’ management and alternatives to control measures.Research design:Using Charles Taylor’s hermeneutic framework, a 2-month focused ethnography with a participatory (...) approach was used.Participants and research context:Sixteen caregivers were interviewed in a Canadian mental health setting for adults with intellectual disability/autism spectrum disorder and psychiatric comorbidity.Ethical considerations:The research was conducted in compliance with the Declaration of Helsinki and local Research Ethics Board approval. Written informed consent was collected systematically from participants.Findings:By accounting for caregivers’ moral experiences, this study sheds light on a neglected dimension of the care relationship: the vulnerability of the caregiver. We highlight the main barriers and facilitators to alternatives to control measures. First, a caregiver’s vulnerability was characterised by the overall impact of challenging behaviours and the moral distress associated with the use of control measures and exclusion mechanisms of intellectual disability/autism spectrum disorder patients. Second, a strong ambiguity between care and control measures and a lack of inclusive approaches were identified as the two main barriers to challenging behaviour management. Third, the involvement, both professional and personal, of caregivers was deemed necessary to implement alternatives to control measures.Discussion:A conflict of values opposes two conceptions of autonomy: a rational autonomy, which is counterproductive to the reduction of control measures, versus a relational autonomy based on shared vulnerability.Conclusion:The recognition of caregiver’s vulnerability is a benchmark to create alternative approaches, which defuse the logic of control and promote an ethics of care within which caregivers’ self-concern can be understood as fostering mutual respect. (shrink)

Moral questions surrounding suffering tend to focus on obligations to relieve others’ suffering. In this paper, I focus on the overlooked question of what sufferers morally owe to themselves, arguing that they have the duty to self-care. I discuss agents who have been shaped by moral luck to contribute to their own suffering and canvass the ways in which this damages their moral agency. I contend that these agents have a duty to care for themselves by protecting and expanding their (...) agency, which involves precluding further destruction of agency and ensuring the continued ability to self-care. (shrink)

In this paper, I examine how an organization narratively constructs its prototypical disabled employee. Data comprise public narratives of the Government of India, the country’s largest employer of disabled persons. Narratives during 2008–2016 were considered as this timespan witnessed the design of inclusive legislation that emphasized defining disabled persons and their entitlements. Findings indicate that the label of “disadvantage” was consistently used to portray the target employee. Alongside other narrative material suggesting, for example that the target employee was someone who (...) required employment assistance, this label was supplied to external audiences to convert them into potential partners. This supply of narrative material further reinforced the portrayal of the target employee. Consistent use of this expansive label subsumed changing definitions of who is a disabled person, allowed for aggregations with diverse disadvantaged collectives, and accommodated changes in employment entitlements and ecosystem partners, thereby allowing the reading of change in stable narratives. The contributions of this paper lie in highlighting how the consistent use of an expansive label can cast narrative stability and change as complementary, and in suggesting that narrating a prototypical employee entails shaping the setting outside the employing organization toward employee categorization. (shrink)

There are two widely-held intuitions about morality. One is the claim that all persons have equal moral worth; the other is that sometimes we are morally allowed or even required to give preference to those individuals whom we love. How can we justify our reasons of love in the face of moral egalitarianism? as of recently, there are three mutually competing accounts of why it could be said that we have reasons of love: (i) the projects view, (ii) the relationship (...) view, and (iii) the individuals view. In this paper, I first examine these three views and find fault with each of them as they stand. I then proceed to propose a complex, yet a more compelling, account of reasons of love that builds on the individuals view. (shrink)

Hastings Center Report, Volume 52, Issue 5, Page 15-23, September–October 2022.

Welfare states are in a care crisis both in the sense of a practical care gap and in the new movement to limit care to mere rehabilitation. Few political theorists pay attention to these developments, and those who do say little about the potential limits to care. This article discusses Philip Pettit’s theory of social justice in relation to questions of public care provisions. Pettit’s theory has been praised by feminists for its attention to social injustices and because it highlights (...) fair limits to care. The article examines how Pettit builds up his argument involving the idea of a gateway good, heuristics and a set of constraints. Although the article points to the value of Pettit’s theory, Pettit’s arguments to limit the state’s care tasks depend on the false assumption that a theory of justice considers able-minded adults only. This article argues that Pettit’s assumption that we leave out children and not-so-able-minded elderly leads to a general neglect o... (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)

This article is an examination of the doctor–woman patient encounter through a vulnerability lens. This relationship has been traditionally been critiqued as a paternalistic encounter in which the...

Moral agential neuroenhancement can transform us into better people. However, critics of MB raise four central objections to MANEs use: It destroys moral freedom; it kills one moral agent and replaces them with another, better agent; it carries significant risk of infection and illness; it benefits society but not the enhanced person; and it’s wrong to experiment on nonconsenting persons. Herein, I defend MANE’s use for prisoners of war fighting unjustly. First, the permissibility of killing unjust combatants entails that, in (...) cases where MANE is equally or more likely as termination to reduce moral recidivism in unjust combatants, then MANE is morally justified. Second, the relevant infections and illnesses caused by MANE are less bad than death, so MANE leaves unjust POWs better off than the alternative. Third, just as incarceration is often permissible despite benefitting society but not the incarcerated, the same holds for unjust POWs. Fourth, we should accept a broader construal of “benefit” that includes moral benefits. Thus, 3 and 4 are false when applied to unjust POWs. Fifth, medical experimentation likely to help nonconsenting persons is sometimes permissible. Because MANE is likely to help unjust POWs irrespective of their consent or lack thereof, its use is permissible. Sixth, basic principles of proper medical care support the use of MANE on unjust POWs as pro tanto morally obligatory. I conclude that militaries should therefore begin to employ MANE for unjust POWs. (shrink)

Patients with severe disorders of consciousness are thought to be unaware of themselves or their environment. However, research suggests that a minority of patients diagnosed as having a disorder of consciousness remain aware. These patients, designated as having “cognitive motor dissociation”, can demonstrate awareness by imagining specific tasks, which generates brain activity detectable via functional neuroimaging. The discovery of consciousness in these patients raises difficult questions about their well-being, and it has been argued that it would be better for these (...) patients if they were allowed to die. Conversely, I argue that CMD patients may have a much higher level of well-being than is generally acknowledged. It is far from clear that their lives are not worth living, because there are still significant gaps in our understanding of how these patients experience the world. I attempt to fill these gaps, by analyzing the neuroscientific research that has taken place with these patients to date. Having generated as comprehensive a picture as possible of the capacities of CMD patients, I examine this picture through the lens of traditional philosophical theories of well-being. I conclude that the presumption that CMD patients do not have lives worth living is not adequately supported. (shrink)

This essay argues that dominant responses to the COVID-19 pandemic redouble disparities in vulnerability to harms because these responses simply attempt to return to conditions prior to the outbreak of the virus. Although the widespread impact of COVID-19 has made interdependence more vivid, the underlying sociocultural devaluation of vulnerability, relationality, and dependency has intensified structural inequalities. People who were already disempowered and disadvantaged have been consigned to even more precarious conditions. A feminist ethical perspective avows vulnerability, relationality, and dependency as (...) conditions that are both unavoidable and central to life. Such a perspective thus provides insight into why some dominant responses to the virus are unjust and what more ethical and more socially just responses to the pandemic, which foster social health as well as physical health, might look like. (shrink)

The contemporary industrialized global food system has sustained an onslaught of criticism from diverse parties—academic and popular, scientists and social justice advocates, activists and intellectuals—criticism that has only intensified in the late twentieth and early twenty-first centuries. Feminist voices have made substantial contributions to these critiques, calling attention to the cultural politics of food and health ; to the impact of the corporatization of agriculture on food quality, the environment, and the people of the Global South, especially women ; and (...) to the complicated relationship among cooking, eating, and gender, including how food.. (shrink)

This article introduces Designing for Care (D4C), a distinctive approach to project management and technological design informed by Care Ethics. We propose to conceptualize “care” as both the foundational value of D4C and as its guiding mid-level principle. As a value, care provides moral grounding. As a principle, it equips D4C with moral guidance to enact a caring process. The latter is made of a set of concrete, and often recursive, caring practices. One of the key assumption of D4C is (...) a relational ontology of individual and group identities, which fosters the actualization of caring practices as essentially relational and (often) reciprocal. Moreover, D4C adopts the “ecological turn” in CE and stresses the ecological situatedness and impact of concrete projects, envisioning an extension of caring from intra-species to inter-species relations. We argue that care and caring can influence directly some of the phases and practices within the management of (energy) projects and the design of sociotechnical (energy) artefacts and systems. When issues related to “value change” emerge as problematic (e.g., values trade-offs, conflicts), the mid-level guiding principle of care helps evaluate and prioritize different values at stake within specific projects. Although there may be several actors and stakeholders involved in project management and technological design, here we will focus on the professionals in charge of imagining, designing, and carrying out these processes (i.e., project managers, designers, engineers). We suggest that adopting D4C would improve their ability to capture and assess stakeholders’ values, critically reflect on and evaluate their own values, and judge which values prioritize. Although D4C may be adaptable to different fields and design contexts, we recommend its use especially within small and medium-scale (energy) projects. To show the benefits of adopting it, we envisage the application of D4C within the project management and the technological design of a community battery. The adoption of D4C can have multiple positive effects: transforming the mentality and practice of managing a project and designing technologies; enhancing caring relationships between managers, designers, and users as well as among users; achieving better communication, more inclusive participation, and more just decision-making. This is an initial attempt to articulate the structure and the procedural character of D4C. The application of D4C in a concrete project is needed to assess its actual impact, benefits, and limitations. (shrink)

Simple acts of kindness that are performed sincerely and with evident good will can also, paradoxically, be perceived as deeply insulting by the people we succeed in benefiting. When we are moved to help someone out of genuine concern for her, when we have no intention to humiliate or embarrass her and when we succeed at benefiting her, how can our generosity be disparaging or demeaning to her? Yet, when the tables are turned, we sometimes find ourselves brusquely refusing assistance (...) from others or accepting it only grudgingly while trying to show that we do not need their charity. People with disabilities often find ourselves in situations of this sort, where we bristle at others who rush to open doors for us, for instance, while our kindhearted benefactors are surprised and hurt by the cold reception they receive for their efforts. My aim is to explain some of the ways in which well-intentioned and effective beneficence can be offensive, with special emphasis on cases in which someone provides assistance to a disabled person. (shrink)

Dementia is more than a disease. What dementia is, how it is understood, and how it is experienced is influenced by multiple factors including our societal preoccupation with individual identity. This essay introduces empirical and theoretical evidence of alternative ways of understanding dementia that act as a challenge to common assumptions. It proposes that dementia be understood as an experience of systems, particularly networks of people affected by the diagnosis. Taking this step reveals much about the dementia experience, and about (...) what can be learned from persons with dementia and their networks of family, friends, and carers. It also suggests that dementia may be best thought of as an ecology that arises from the interaction between neuropathological change, people, language, and meaning. While challenging, this perspective may provide new ways of responding to dementia and caring for those affected by it. (shrink)

The COVID-19 pandemic has highlighted the difficult task of balancing access to misinformation with respect for patient decision-making. Due to its innate antagonism, the paradigm of “physician paternalism” versus “patient autonomy” may not adequately capture the clinical relationship. The authors hypothesized that most patients would, in fact, prefer significant physician input as opposed to unopinionated information when making medical decisions. There is a lack of empirical data corroborating this in the United States. To that end, a survey was distributed to (...) 650 individuals through Amazon Mechanical Turk, of which 499 responses met pre-determined quality criteria. Most respondents believed their doctor's insight would be better than their own if injured or gravely ill. When asked to affirm preferences separately, a significantly higher proportion of respondents preferred guidance from their doctor when making medical decisions compared to being presented with unopinionated information ( p < 0.001). Encouragingly, 93.1% believed that the doctor's primary goal was their health. When asked directly to compare physician guidance to unopinionated information, 69.1% respondents stated they would prefer physician guidance. We found a consistent association between educational/economic background and affirmative responses ( p < 0.001), suggesting particular attention should be paid to patients that are disadvantaged with respect to these demographic factors. The belief in a shared goal, and a consistent preference for physician input, suggests that patients endorse a more collaborative view of the clinical dynamic than is suggested by the paternalism-autonomy paradigm. This pilot study suggests physicians should not be afraid to communicate conviction with regard to treatment decisions. (shrink)

This essay considers how we are to understand the decision to end one’s life under medical aid-in-dying (MAID) statutes and the role of influencing others. Bioethical concerns about the potential for abuse in MAID have focused predominantly on the risk of coercion and other forms of undue influence. Most bioethical analyses of relational influences in MAID have been made by opponents of MAID, who argue that MAID is unethical, in part, because it cannot cleanly accommodate relational influences. In contrast, proponents (...) of MAID have downplayed the role of relational influences because they may threaten the pillars of autonomy and voluntariness on which the ethics of MAID rest. Drawing on a case study collected as part of an ethnographic study of MAID in Vermont, we show how relations of care are central to MAID decision-making. Such relations may muddle motives for assisted death, exposing the limits of conventional bioethics thinking on MAID and relational influence. Here, we argue that ethical frameworks for MAID should account for the role of relational influences in decision-making, and acknowledge that relational influences may support, as well as undermine, a decision for MAID. We then outline an evaluative framework for determining whether relational influences are undue that identifies six key domains for consideration: mental competence, authenticity, relationship context, having an adequate range options, financial considerations and irremediability. We conclude by suggesting that social relationships may constitute an important source of value in end-of-life decision-making and not only a liability. (shrink)

This paper reflects on the three main ethical challenges we faced when conducting digital ethnography in three autism Brazilian communities on Facebook: how to position oneself as a researcher, how...

This chapter develops a civic republican approach to disability justice. It begins by articulating a republican account of liberty as nondomination before showing how such domination can shape the relationships of people with disabilities. This leads to a consideration of whether disability justice can be defined in terms of maximizing or sufficient nondomination. Instead, the chapter provides a civic framework within which republican disability justice can be understood, encompassing both the absence of oppressive relationships and the presence of capabilities of (...) special egalitarian concern. It also considers some specific normative implications of a republican account of disability justice—doubting the suitability of contestatory democracy but pointing toward the merits of self-education and universal basic income. Finally, the objection that this republican approach to disability justice unreasonably denigrates dependence is rebutted. (shrink)