I aim to illustrate how the recommender systems of digital platforms create a particularly problematic kind of vulnerability in their users. Specifically, through theories of scaffolded cognition and scaffolded affectivity, I argue that a digital platform’s recommender system is a cognitive and affective artifact that fulfills different functions for the platform’s users and its designers. While it acts as a content provider and facilitator of cognitive, affective and decision-making processes for users, it also provides a continuous and detailed amount of (...) information to platform designers regarding users’ cognitive and affective processes. This dynamic, I argue, engenders a kind of vulnerability in platform users, structuring a power imbalance between designers and users. This occurs because the recommender system can not only gather data on users’ cognitive and affective processes, but also affects them in an unprecedentedly economic and capillary manner. By examining one instance of ethically problematic practice from Facebook, I specifically argue that rather than being a tool for manipulating or exploiting people, digital platforms, especially by their underlying recommender systems, can single out and tamper with specific cognitive and affective processes as a tool specifically designed for mind invasion. I conclude by reflecting how the understanding of such AI systems as tools for mind invasion highlights some merits and shortcomings of the AI Act with regards to the protection of vulnerable people. (shrink)

The goal of this paper is to propose a relational turn in healthcare professionalism, to improve the responsiveness of both healthcare professionals and organizations towards care of patients, but also professionals. To this end, it is important to stress the way in which difficult situations and vulnerability faced by professionals can have an impact on their performance of work. This article pursue two objectives. First, I focus on understanding and making visible shared vulnerability that arises in clinical settings from a (...) triple perspective: patient and family, health professionals, and institutions. Second, to address this challenge for professionalism, in this paper I articulate the term "relational centered-patient professionalism", which has two main axes. The relational approach means taking into account how the relationships among professionals, patients and institutions determine the constitution and evolution of those professional values. The focus on patient centered care is indispensable, because it is the ultimate goal pursued by the development of these professional values, and must always be at the center. (shrink)

Drawing on the built environment concept of “inclusive design” and its emphasis on creating accessible environments for all persons regardless of ability, I suggest that a central task for feminist disability theory is to redesign foundational philosophical concepts to present opportunities rather than barriers to inclusion for people with disability. Accounts of autonomy within liberal philosophy stress self-determination and the dignity of all individual persons, but have excluded people with intellectual disability from moral and political theories by denying their capacity (...) for individual autonomy, seen as a chief marker of moral personhood. This paper modifies and extends feminist theories of relational autonomy by arguing for the need to view autonomy as a feature of persons that is manifested only through relations of support, advocacy, and enablement. An “inclusively designed,” relational account negotiates the tensions encountered in attempts to apply autonomy to people with high support needs, and politicizes the concept as an advocacy tool for people with intellectual disability and their allies. (shrink)

: This article is an ethnographic analysis of the mutuality that is possible in relationships between caregivers and women with intellectual disabilities who live together in L'Arche homes. Creating mutuality through which both parties grow and exercise agency requires that caregivers learn to negotiate delicate power relations connected to the physics of care and to reframe dominant stereotypes of disability. This helps them to support the women with intellectual disabilities to name and achieve their desires.

This article is an ethnographic analysis of the mutuality that is possible in relationships between caregivers and women with intellectual disabilities who live together in L'Arche homes. Creating mutuality through which both parties grow and exercise agency requires that caregivers learn to negotiate delicate power relations connected to the physics of care and to reframe dominant stereotypes of disability. This helps them to support the women with intellectual disabilities to name and achieve their desires.

Prevailing philosophies about parental and other caregiver responsibilities toward children tend to be protectionist, grounded in informed benevolence in a way that countenances rather than circumvents intrusive paternalism. And among the kinds of children an adult might be called upon to parent or otherwise care for, children with disabilities figure among those for whom the strongest and snuggest shielding is supposed be deployed. In this article, we examine whether this equation of securing well-being with sheltering by protective parents and other (...) care-givers should unreflectively be adopted for disabled children. We also consider why healthcare providers might reasonably be reluctant to yield to this principle, even if parents instinctively suppose that protectionism is the parenting policy that best serves their disabled child’s interest. We contend that caregivers owe children with disabilities at least as much, and possibly more, respect for self-governance than other children need. In spite of disabled children’s vulnerability and even in view of it, we argue that they should be accorded not only welfare rights to well-being but at least a modified version of liberty rights as well. Healthcare providers are especially favorably positioned to facilitate the latter response. The main components of respectful caregiving can come into conflict with one another, but we present some priorities that advise against adopting a protectionist account of parenting rights, or at least against accepting protectionist views that focus parenting narrowly on shaping ideas about the child’s welfare. In sum, caring for a disabled child, we argue, involves more than creating conditions that will afford her contentment and comfort over the course of life. (shrink)

The republican revival in political philosophy, political theory, and legal theory has produced an impressive range of novel interpretations of the historical figures of the republican tradition. It has also given rise to a variety of contemporary neo-republican theories that build on its historical themes. Although there have been some feminist discussions of its historical representatives, neo-republicanism has not generated a great deal of enthusiasm among feminists. The present paper examines Phillip Pettit's theory of freedom as nondomination in order to (...) assess its potential usefulness for those with feminist goals. It defends Pettit's account of interpersonal domination from certain feminist objections, but argues that his account of state domination needs to be amended if it is fully to protect the interests of women and other groups. (shrink)

This paper raises several concerns about vulnerability as an alternative language to conceptualize injustice and politicize its attendant injuries. First, the project of resignifying “vulnerability” by emphasizing its universality and amplifying its generative capacity, I suggest, might dilute perceptions of inequality and muddle important distinctions among specific vulnerabilities, as well as differences between those who are injurable and those who are already injured. Vulnerability scholars, moreover, have yet to elaborate the path from acknowledging constitutive vulnerability to addressing concrete injustices. Second, (...) vulnerability studies respond to, and have been shaped by, debates in the 1980s and 1990s over oppression, identity and agency. This genealogy needs to be acknowledged and evaluated. As I demonstrate, prominent theorists define vulnerability in contradistinction to victimization, adopting neo-liberal formulations of victims and victimhood. Finally, I turn to address the politics of vulnerability. At issue are not simply matters of utility or programmes for implementation, but the fraught relationship among ontology, ethics and politics, which I address through an engagement with Rancière's conception of the political and the case of the Black Lives Matter movement. (shrink)

Contractarianism is more inclusive than critics (and, indeed, Gauthier) sometimes suggest. Contractarianism can justify equal moral standing for human persons (in some respects) and provide sufficient moral standing for many nonhuman animals to require what we commonly call decent treatment. Moreover, contractarianism may allow that some entities have more moral standing than others do. This does not necessarily license the oppression that liberal egalitarians rightly fear. Instead, it shows that contractarianism may support a nuanced account of moral status.

For several decades, public political discourses on ‘welfare dependency’ have failed to recognise that welfare states are not the source of economic dependence, but rather reconfigure economic dependencies in a specific way. This article distinguishes four senses of ‘economic dependence’ that can help to clarify what is missing from these discourses, and what is at stake in political and legal decisions about how we may economically depend upon one another. While feminist, republican and egalitarian philosophical work has examined the problems (...) of dependence on states, in families and in markets, the present approach adds a further dimension to our cultural and political concerns with economic dependence: it argues that it is reasonable and useful to consider the economic dependence of the economically powerful. Doing so requires a clarification of the ‘varieties of dependence’ that exist in contemporary societies and economies, and the recognition that legal and political choices regarding social and economic justice are often about choosing between varieties of dependence, not about escaping dependence entirely. (shrink)

Agonizing care: care ethics, agonistic feminism and a political theory of care ‘Care’ is central to nursing theory and practice, and has been described in a variety of ways. Intense conversations about care have been developing in other fields of study as well, from the social sciences to the humanities. Care ethics has grown out of intellectual exchange between feminist thought, moral theory and the critique of traditional western political philosophy. However, care ethics is not without its critics, as these (...) accounts of care have also sparked vigorous challenges. This paper traces the construct of care through nursing theory, care ethics, feminist critiques of moral and political theory and agonistic feminism to outline a set of problematics that a political theory of care should engage. It discusses how care is conventionally posited in more or less essentialist, universalizing and naturalizing terms. It introduces the ideas of feminist theorists who resist dichotomizing care and the political, and situate care in the context of power and politics. The tensions between care feminism and agonistic feminism are highlighted in order to explore the potential of theorizing both care and nursing in political terms. (shrink)

Judith Butler, Joan Tronto, and Stephen King all hinge human experience on shared ontological vulnerability, but whereas Butler and Tronto use vulnerability to build ethical commitments, King exploits aging, disability, and death to frighten us. King's horror genre is provocative for the imaginative landscape of feminist theory precisely because he uses vulnerability to magnify the anxieties of mass culture. In Christine, the characters' shared susceptibility to psychic and physical injury blurs the boundary between care and violence. Like Butler, King depicts (...) our social worlds encrusted with normative violence: the mundane ways that norms police gender, race, class, and disability identities. And like Butler, King makes undecidability a key feature of human identity: the idea that needs and identities are uncertain. Normative violence and undecidability trouble the starting point of Tronto's care theory—attentiveness to needs—because both concepts invest interdependency with ambiguity and conflict. But like Tronto, King recognizes that care-actors must act, even amid ambiguity and even when their actions make care and aggression converge. Christine's supernatural plot details the psychic possession of an American teenager, but the novel's more terrifying story is about interdependency and how normative violence is not the antithesis of care, but its dark underbelly. (shrink)

Deliberative democracy harbors a recurrent tension between full inclusion and intelligible speech. People with profound cognitive disabilities often signify this tension. While liberal deliberative theorists sacrifice inclusion for intelligibility, this exclusion is unnecessary. Instead, by analyzing deliberative locations that already include people with disabilities, I offer two ways to revise deliberative norms. First, the physical presence of disabled bodies expands the value of publicity in deliberative democracy, demonstrating that the publicity of bodies provokes new conversations similar to rational speech acts. (...) Second, the inclusion of people with profound disabilities necessitates a form of collaborative speech in which individuals make claims collaboratively. Habermas offers an ideal site to pursue this analysis because he recognizes the theoretical tension between inclusion and intelligibility and because his personal testimony reveals important insight into the lived experience of disability. (shrink)

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

This paper discusses the question whether care work for dependent persons (children, the elderly, and disabled persons) may be entrusted to the market; that is, whether and to what extent there is a normative justification for the “commodification of care.” It first proposes a capability theory for care that raises two relevant demands: a basic capability for receiving care and a capability for giving care. Next it discusses and rejects two objections that aim to show that market-based care undermines the (...) caring motives essential to care, one of them because of its reliance on contracts and the other because of the corrupting influence of payment on motivation. If market care is in principle legitimate, the commodification question transforms into one about the appropriate combinations of market and non-market care. This question can be answered only by adding an additional complication: care is to be balanced against other activities, most notably work for the labor market. This brings in the problem of gender inequality, since paid work has been traditionally distributed to men and caring activities to women. I show how the capability theory of caring presented in this paper can help resolve the dispute between competing models for balancing work and caring. (shrink)

The literature on epistemic injustice currently displays a logocentric or propositional bias that excludes people with intellectual disabilities from the scope of epistemic agency and the demands of epistemic justice. This paper develops an account of epistemic agency and injustice that is inclusive of both people with and people without intellectual disabilities. I begin by specifying the hitherto undertheorized notion of epistemic agency. I develop a broader, pluralist account of epistemic agency, which relies on a conception of knowledge that accounts (...) not only for propositional knowing, but also for other types of knowing that have been largely neglected in debates on epistemic injustice and agency. Based on this pluralist account of epistemic agency, I then show that people with intellectual disabilities qualify as epistemic agents and therefore as subjects of epistemic justice. Finally, I argue that this pluralist account of epistemic agency pushes us to revisit the current conception of epistemic injustice and to expand its taxonomy in two important ways. (shrink)

The contrast between third- and first-personal accounts of the experiences of autistic persons has much to teach us about epistemic injustice and epistemic agency. This paper argues that bringing about greater epistemic justice for autistic people requires developing a relational account of epistemic agency. We begin by systematically identifying the many types of epistemic injustice autistic people face, specifically with regard to general assumptions regarding autistic people’s sociability or lack thereof, and by locating the source of these epistemic injustices in (...) neuronormativity and neurotypical ignorance. We then argue that this systematic identification pushes us to construe epistemic agency as resulting from a fundamentally relational and dynamic process between an individual, others around them, and their social, cultural, or institutional environment, rather than as a fixed and inherent property of individuals. Finally, we show how our relational account of epistemic agency allows us to introduce the novel concepts of epistemic disablement and epistemic enablement. We argue that these two concepts allow us to more accurately track the mechanisms that undermine or facilitate epistemic agency, and thereby to better understand how epistemic injustice arises and to design more effective interventions to foster greater epistemic justice for autistic people. (shrink)

This paper considers the bioethics of estranged biological kin, who are biologically related people not in contact with one another (due to adoption, abandonment, or other long-term estrangement). Specifically, I am interested in what is owed to estranged biological kin in the event of medical need. A survey of current bioethics demonstrates that most analyses are not prepared to reckon with the complications of having or being estranged biological kin. For example, adoptees might wonder if a lack of contact with (...) biological kin could someday affect their medical care (or affect the medical care of their biological relatives). Estranged biological kin, such as adoptees, present us with a chance to think about human connection. After sketching several organ-donation and adoption tropes, I argue that a feminist analysis of vulnerability and dependency is helpful for understanding the confusing ties of estranged biological kin. I conclude by proposing a medical registry that would put adoptees and others in touch with their estranged biological kin on a medically as-needed basis. (shrink)

: In liberal societies (where birth control is generally accepted and available), many people decide whether or not they wish to become parents. One key question in making this decision is, What kind of parent will I be? Parenting competence can be ranked from excellent to competent to poor. Cassidy argues that those who can foresee being poor parents, or even merely competent ones, should opt not to parent.

In liberal societies, many people decide whether or not they wish to become parents. One key question in making this decision is, What kind of parent will I be? Parenting competence can be ranked from excellent to competent to poor. Cassidy argues that those who can foresee being poor parents, or even merely competent ones, should opt not to parent.

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 essay explores various roles that philosophers occupy in relation to intellectual disability. In examining how philosophers define their object of inquiry as experts and gatekeepers, it raises critical questions concerning the nature of philosophical discourse about intellectual disability. It then goes on to consider three alternate positions, the advocate or friend, the animal, and the “intellectually disabled,” each of which points to new ways of philosophizing in the face of intellectual disability.

This Introduction to the collection of essays surveys the philosophical literature to date with respect to five central questions: justice, care, agency, metaphilosophical issues regarding the language and representation of cognitive disability, and personhood. These themes are discussed in relation to three specific conditions: intellectual and developmental disabilities, Alzheimer's disease, and autism, though the issues raised are relevant to a broad range of cognitive disabilities. The Introduction offers a brief historical overview of the treatment cognitive disability has received from philosophers, (...) and explains the specific challenges that cognitive disability poses to philosophy. In briefly summarizing the essays in the collection, it highlights the distinctive contributions the collection makes to ethics, political philosophy, bioethics, and the philosophy of disability. We hope that the richness of the topics explored by these essays will be a spur to further investigation. (shrink)

This essay explores various philosophical approaches to cognitive disability within feminist philosophy. In doing so, it addresses three broad questions: What positive contributions can feminist philosophy make to the philosophy of cognitive disability? How have feminist philosophers critiqued the presence and absence of cognitive disability in philosophy? And what challenges does cognitive disability pose to feminist philosophy itself? The essay begins with definitions and models of disability and then turns to feminist work on cognitive disability in moral and political philosophy, (...) bioethics, and epistemology. It concludes with some methodological considerations. (shrink)

Suffering is a ubiquitous yet elusive concept in health care. In a field devoted to the pursuit of objective data, suffering is a phenomenon with deep ties to subjective experience, moral values, and cultural norms. Suffering’s tie to subjective experience makes it challenging to discern and respond to the suffering of others. In particular, the question of whether a child with profound neurocognitive disabilities can suffer has generated a robust discourse, rooted in philosophical conceptualizations of personhood as well as the (...) academic and experiential expertise of practiced health-care professionals. The issue remains unresolved because it is difficult, perhaps impossible, to ever truly know an infant’s lived experience. But what if this is not the best question? What if instead of asking “can this infant suffer?” the discourse is broadened to ask “is there suffering here?” This latter question demands attention to patients’ subjective experiences of suffering, but also to the web of relationships that envelop them. Without losing sight of the importance of patients’ experiences, consideration of their relationships may elucidate the presence of suffering when the patients themselves are unable to provide the same clarity. In this essay, care ethics frames an examination of how suffering manifests in the loving and caring relationships that surround an infant with profound neurocognitive disabilities, changing those relationships and affecting the individuals within them. Exploring suffering through these relationships may offer clarity on the presence and content of suffering for infants with profound cognitive disabilities, in turn offering moral guidance for responding to suffering and supporting flourishing in this context. (shrink)

This paper provides an empirically informed perspective on the notion of responsibility using an ethical framework that has received little attention in the engineering-related literature to date: ethics of care. In this work, we ground conceptual explorations of engineering responsibility in empirical findings from engineering student’s writing on the human health and environmental impacts of “backyard” electronic waste recycling/disposal. Our findings, from a purposefully diverse sample of engineering students in an introductory electrical engineering course, indicate that most of these engineers (...) of tomorrow associated engineers with responsibility for the electronic waste problem in some way. However, a number of responses suggested attempts to deflect responsibility away from engineers towards, for example, the government or the companies for whom engineers work. Still other students associated both engineers and non-engineers with responsibility, demonstrating the distributed/collective nature of responsibility that will be required to achieve a solution to the global problem of excessive e-waste. Building upon one element of a framework for care ethics adopted from the wider literature, these empirical findings are used to facilitate a preliminary, conceptual exploration of care-ethical responsibility within the context of engineering and e-waste recycling/disposal. The objective of this exploration is to provide a first step toward understanding how care-ethical responsibility applies to engineering. We also hope to seed dialogue within the engineering community about its ethical responsibilities on the issue. We conclude the paper with a discussion of its implications for engineering education and engineering ethics that suggests changes for educational policy and the practice of engineering. (shrink)

For many of us, entry into motherhood involves an ambiguous visibility and intelligibility, where our acceptance into mainstream spaces as mothers entails a loss of lesbian difference. Mann explores this loss using the work of two philosophers of lesbian difference, Monique Wittig and Judith Butler. She argues that the figure of the lesbian mother is deployed on a broad cultural scale to reinvigorate and renaturaUze the myth of the happy, natural, heterosexual mother.

In the last two decades, a robust consensus has emerged among philosophers of science, whereby political, ethical, or social values must play some role in scientific inquiry, and that the ‘value-free ideal’ is thus a misguided conception of science. However, the question of how to distinguish, in a principled way, which values may legitimately influence science remains. This question, which has been dubbed the ‘new demarcation problem,’ has until recently received comparatively less attention from philosophers of science. In this paper, (...) I appeal to Rawls’s theory of justice (1971) on the basis of which I defend a Rawlsian solution to the new demarcation problem. As I argue, the Rawlsian solution places plausible constraints on which values ought to influence scientific inquiry, and, moreover, can be fruitfully applied to concrete cases to determine how the conflicting interests of stakeholders should be balanced. After considering and responding to the objection that Rawls’s theory of justice applies only to the “basic structure” of society, I compare the Rawlsian solution to some other approaches to the new demarcation problem, especially those that emphasize democratic criteria. (shrink)

Analyses of care work typically speak of three necessary roles of care: the care worker, the care recipient, and an economic provider who makes care materially possible. This model provides no place for addressing the difficult political questions care poses for liberal representative democracy. I propose to fill this space with a new caring role to connect the care unit to the political sphere, as the economic provider connects the care unit to the economic sphere. I call this role that (...) of the “care claimant.” The labor of claiming care consists in the development, expression, and advancement of the interests of the care unit. The argument for employing this fourth care role begins by comparing Nel Noddings's phenomenological care unit to Sara Ruddick's family-based analysis. It then moves to discuss the way Eva Kittay emphasizes the dependency of the charge and its political ramifications to illustrate the need for a care claimant. After distinguishing the care claimant from the other roles of care, I examine the power relationships in the care unit and the position of the care claimant in the public sphere. (shrink)

This essay assess the compatibility of Eva Kittay's dependency critique with Rawlsian political liberalism. I argue for the inclusion of a modified version of Kittay's revisions within Rawlsian theory in order to yield a theory that suppports a substantial subset of dependency work. Beyond these selected changes, however, I argue that Kittay's other proposed changes should not be included because they are incompatible with Rawls, and furthermore, their incorporation does not yield a theory that includes utter dependents.

This article discusses the challenging context that health care professionals are confronted with, and the impact of this context on their emotional experiences. Care ethics considers emotions as a valuable source of knowledge for good care. Thinking with care ethical theory and looking through a care ethical lens at a practical case example, the authors discern reflective questions that shed light on a care ethical approach toward the role of emotions in care practices, and may be used by practitioners and (...) facilitators for care ethical reflection on similar cases, in the particular and concrete context where issues around emotional experiences arise. The authors emphasize the importance of allowing emotions to exist, to acknowledge them and to not repress them, so that they can serve as a vehicle for ethical behavior in care practices. They stress the difference between acknowledging emotions and expressing them limitlessly. Formational practices and transformational research practices are being proposed to create moral space in care institutions and to support health care professionals to approach the emotionally turbulent practices they encounter in a way that contributes to good care for all those involved. (shrink)

Margaret Urban Walker’s essay ‘Getting out of line’ questions gendered assumptions about moral agency in old age and its assumed links to the concept of a ‘career self.’ In this article I develop and apply her critique to consider what forms ageing activism might take. This focuses on recognising and remembering the value of connections with people and with struggles that may both pre-date and outlive the individual. I suggest that we need to think of remembering as future as well (...) as past oriented and as political as well as personal. In developing my argument I draw from experience of working with old people in initiatives focussed on achieving change in health and social care services, on accounts of feminist activists of different generations and on personal reflections of contacts that embody both awareness of different vulnerabilities and of shared struggles for change. (shrink)

In an article in this issue of the Hastings Center Report, Aaron Wightman and his coauthors attempt to address health care providers’ moral distress about acceding to parents’ requests to provide life‐sustaining medical treatment to children who have profound cognitive disabilities. They propose combining John Arras's relational potential standard and care ethics, and they argue that the capacity for caring relationships can provide an independent moral justification for honoring such requests. This combination is, however, unstable. Wightman et al.'s language of (...) potential and capacity opens the possibility of substantial misinterpretation. They rely on epistemological and prognostic uncertainty to argue that reciprocity and participation may be present in the parent‐child relationship even when the child's engagement cannot be observed. The terminology suggests that these are characteristics that can be gained or lost rather than characteristics of being born within certain social practices. In contrast, Eva Feder Kittay illuminates family membership as an important social relation. Her articulation of the independent moral value of parenting stands on its own without being conjoined to Arras's position. (shrink)

This article asks how people come to interpret themselves and others as autonomous given their multiple dependencies. We draw on a cross-case comparison of ethnographic studies with two populations for whom autonomy is both central and problematic: elderly patients in post-acute care, and young adults with disabilities in an independent living program. Analyzing the institutional efforts to make their clients “as independent as possible,” we find that staff members at each organization formulate autonomy as a temporal project through an ongoing (...) calibration of open futures, ideal pasts, and situational competence. Constantly adjusting and fine-tuning where in time autonomy “really” is, workers arrange present dependence so that the contours of the future remain open for their clients. In other words, they make use of temporal markers to produce recognizable autonomous subjects whose dependencies are momentary. Theorizing this temporal project enables us to see more clearly how all of us engage in the constant business of “doing” autonomy, and to better understand the role of institutions in producing autonomous selves. (shrink)

Sensationalized representations of autistic families in film and other media frequently feature violent encounters between mothers and sons. This essay analyzes two media stories and three films that suggest how limited—and therefore misleading—popular representations of the autism family are. Except for one of the films, these representations blame the problem of adult autistic dependency on either monstrous autism or bad mothering. Doing so elides collective social responsibility for autism care and denies the reality that autistic adults continue to have complex (...) dependency needs that families cannot always meet. Narratives that sensationalize youth and adults with autism or scapegoat their maternal caregivers also diminish opportunities for social inclusion and for autistic people to live fully and dependently. (shrink)

Independence was a core value of the movement for disability rights. People with disabilities did not have to be dependent, advocates claimed; they were robbed of autonomy by poverty, social prejudice, and architectural barriers. Recently, critics have noted that the emphasis on independence equates personhood with autonomy, reason, and self-awareness, thereby excluding those who are incapable of self-determination. The stigma of dependency is communicated to caregivers whose work is devalued and undercompensated. These values are echoed in the life writing of (...) people with disabilities, which tends to present a singular narrative voice, even when the author requires assistance in the physical or intellectual work of composition. The 1979 Mexican memoir-testimonio Gaby Brimmer, collaboratively authored by the acclaimed journalist Elena Poniatowska, Brimmer, her mother, and her paid caregiver is a notable exception. Consisting of interwoven dialogue among its three informants, Gaby Brimmer enacts dependency at the level of form, while exploring the challenges and opportunities of interdependence in societies that devalue the giving and receiving of care. (shrink)

This essay defends the controversial and indeed counterintuitive claim that there is a good argument to be made from a Lockean perspective for government action to guarantee access to health care. The essay maintains that this argument is in some regards more robust than the well-known argument in defense of universal health care spelled out by Norman Daniels, which this essay also examines in some detail. Locke's view that government should protect people's lives, property, and freedom–where freedom is understood as (...) independence and self-determination–justifies government action to ensure access to health care, because (roughly), just as individuals cannot protect themselves from crime and foreign invasion, so individuals are unable to provide for their own health care. Defense from disease is as important as defense from crime, and–although this is arguable–government action to guarantee access to health care does not itself undermine freedom. (shrink)

The aim of this paper is to get from a phenomenology of birth towards an ethics of obstetric care: Human rights violations in obstetrics are currently a globally debated phenomenon. Research suggests that maltreatment is widespread and a global phenomenon. However, the prevalence cannot yet be clearly quantified. In view of this problem, it is necessary to take the subjective perspective of those affected seriously. Narrative and phenomenological accounts of birth experiences could help to foster the dialogue between persons giving (...) birth and health professionals. First, I will present narrative accounts of birth experiences recorded by feminist phenomenologists. Second, I will interpret these narrative accounts within a feminist phenomenological framework in order to contribute to a phenomenology of birth, which, in a third step, shall help to develop an ethics of obstetric care. In engaging with the phenomenology of care outlined by feminist care ethicists, I will analyze the elements and conditions of good care, and draw conclusions for an ethic of obstetric and midwifery care. Drawing additionally on the theory of relational autonomy, my paper argues for a relational implementation of self-determination in childbirth. Lastly, I will discuss to what extent the ethical ideal of care has an affinity to the midwifery model of childbirth, and how the current situation of obstetrics prevents a women-centered birth culture. (shrink)

This paper examines older people’s access to care experiences in rural China by integrating anthropological investigation with ethical inquiry. Six months of fieldwork in a post-reform primary hospital show how rural residents struggle to access gerontological and nursing care under socially disadvantageous conditions. This anthropological investigation highlights the unmet needs in medical and nursing care for older people, as well as some social, institutional and structural elements that impede access to care. Centring on protecting the vulnerable as informed by feminist (...) ethics scholarship, this paper argues that the failure to meet older people’s dependency needs is unjust, on the premise that it suggests a denial of the inherent value, rights and dignity of older people. This paper appeals for the provision of greater care and support by the state through putting in place social arrangements that better advance older people’s access to care. Some policy recommendations concerning health and social care reform for older people in rural China are also proposed. (shrink)

In this paper, I critically analyze Andrea Sangiovanni’s approach to international justice in the EU that he labels Reciprocity-based Internationalism (RBI). I aim to show that the type of reciprocity RBI operates with is not a morally attractive ground for distributive justice because it cannot cope with the case of member states’ inability to reciprocate the production of collective goods at the EU level. I illustrate this with the case of disability. I contrast RBI’s understanding of reciprocity with Christie Hartley’s (...) ‘relationship model’. I argue that the relationship model of reciprocity should characterize the EU, whose two core normative features are fraternity and equal status. The advantage of the relationship model is that it calls for a stronger type of solidarity than RBI does. That not only entails the willingness to support those worse-off members that cannot productively reciprocate other member states’ efforts at the EU level but also calls for a higher redistribution rate within the EU. In the paper, I make three comparisons between RBI’s ‘productive reciprocity’ and the relationship model. The first concerns non-EU-integration-related disadvantages; the second concerns membership cases, such as accession to federations and supranational unions, while the third comparison examines EU-integration-related disadvantages. I argue that the relationship model is a better alternative to RBI in both integration-related and non-integration-related disadvantages. Also, the relationship model can justify accession cases where previous historical ties are relevant, which are outside of the purview of RBI. (shrink)

There is a consensus that the effects of medical brain drain, especially in the Sub-Saharan African countries, ought to be perceived as more than a simple misfortune. Temporary restrictions on the emigration of health workers from the region is one of the already existing policy measures to tackle the issue—while such a restrictive measure brings about the need for quite a justificatory work. A recent normative contribution to the debate by Gillian Brock provides a fruitful starting point. In the first (...) step of her defence of emigration restrictions, Brock provides three reasons why skilled workers themselves would hold responsibilities to assist with respect to vital needs of their compatriots. These are fair reciprocity, duty to support vital institutions, and attending to the unintended harmful consequences of one’s actions. While the first two are explained and also largely discussed in the literature, the third requires an explication on how and on which basis skilled workers would have a responsibility as such. In this article, I offer a vulnerability approach with its dependency aspect that may account for why the health workers in underserved contexts would have a responsibility to attend to the unintended side effects of their actions that may lead to a vital risk of harm for the population. I discuss HIV/AIDS care in Zimbabwe as a case in point in order to show that local health workers may have responsibilities to assist the population who are vulnerable to their mobility. (shrink)

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)