This paper examines the movement for independent living among the Japanese with disabilities from the perspective of multiculturalism and human rights. The IL movement questions the conventional idea, widely held by Japanese without disabilities, that disabled people are in need of special care and cannot live independently in ordinary communities. The IL movement advocates: 1) the reinterpretation of “disability” as mere “difference”, 2) the equal right to autonomy and social participation for the disabled, and 3) the unique right (...) to care and support that enable the disabled to be autonomous. The IL movement thus projects a new “disability culture” that assigns different meanings to disability and calls for radical change in social relationships. The IL movement then is one of many forces that celebrates diversity and advocates pluralism in Japanese society in defiance of the myth of a “homogeneous monocultural” Japan. The IL movement highlights the right to care as a basic human right which is a precondition for the right to autonomy. Consequently, the IL movement reinterprets the notion of autonomy and enriches the concept of “human rights.”. (shrink)

The Japanese disability movement in the 1970s posed an important question about our inner eugenic thought. Their arguments should be one of the focuses of attention for bioethics and philosophy of life in the 21st century. Their philosophy is comparable with DPI’s declaration, “The Right to Live and be Different,” published in 2000. They thought that technology of selective abortion was dangerous because it systematically deprives us of a sense of security (=the fundamental sense of security) that our existence is (...) being accepted unconditionally. They were considered to be seeking “life studies,” which has broader and deeper meanings than contemporary bioethics. (shrink)

Ms. X is a person with cerebral palsy and schizophrenia. She has intractable bedsores that are a result of her immobility and to poor wound care related to her delusional thinking. Despite intensive community support, the wounds have worsened to the point that she has needed multiple hospitalizations to prevent systemic sepsis, a life‐threatening condition. She is capable of placement decisions and wishes for independence at home but is incapable of making wound care decisions and does not appreciate that immediately (...) returning home from the hospital, instead of going into a special care facility, would likely result in sepsis. The resulting dilemma about discharge planning highlights the complexity involved in weighing concerns around mental illness and capacity for treatment and placement of care. The extent of the care that is required and available in a community or health care system and the slow but relatively certain progression of the symptoms also make the decision challenging. Two commentaries take very different approaches in exploring the question whether Ms. X should be supported to go home or to a special care facility. (shrink)

Selon le concept de Nancy Fraser du triple mouvement de protection sociale, d’émancipation et de marchandisation, les forces d’émancipation peuvent former une alliance avec la protection sociale ou la marchandisation. Un véritable exemple d’émancipation est la transformation des services résidentiels de soins aux personnes handicapées en assistance personnelle. Toutefois, on ne sait pas encore très bien pourquoi certaines réformes se chevauchent davantage avec la marchandisation et d’autres avec la protection sociale, alors que d’autres pays n’ont pas entrepris de réformes généralisées (...) de leurs services de soins aux personnes handicapées. Cet article tente d’éclairer cette question en examinant l’approche morphogénétique pour expliquer l’évolution des services de soins aux personnes handicapées dans dix pays européens. Une fuzzy set ideal type analysis a été utilisée pour délimiter quatre types de services de soins aux personnes handicapées. L’analyse a classé la Grèce, la Slovénie et l’Espagne dans le type domestique-traditionnel, la Belgique, l’Allemagne et la Suisse dans le type bienveillant-paternaliste, la Suède dans le type universel-progressif, et la Lettonie, la République slovaque et le Royaume-Uni dans le type précaire-progressif. (shrink)

This article is concerned with the representation of preferences which do not satisfy the ordinary axioms for state-independent utilities. After suggesting reasons for not being satisfied with solutions involving state-dependent utilities, an alternative representation shall be proposed involving state-independent utilities and a situation-dependent factor. The latter captures the interdependencies between states and consequences. Two sets of axioms are proposed, each permitting the derivation of subjective probabilities, state-independent utilities, and a situation-dependent factor, and each operating in a different (...) framework. The first framework involves the concept of a decision situation—consisting of a set of states, a set of consequences and a preference relation on acts; the probabilities, utilities and situation-dependent factor are elicited by referring to other, appropriate decision situations. The second framework, which is technically related, operates in a fixed decision situation; particular “subsituations” are employed in the derivation of the representation. Possible interpretations of the situation-dependent factor and the notion of situation are discussed. (shrink)

Without extending the historical analysis, this article analyzes the relationship between the legal concept of person with regard to the notion of living independently. The concept is normatively established in Article 19 of the CRPD and is presented as a legal fiction. The legal technique of fictio iuris is the premise for analyzing contemporary problems, for example, the attribution of responsibilities to non-human personalities, such as robots. The article, however, develops the problem of attributing rights to persons with disabilities. (...) The contraposition of robots and disabled people, understood as opposing visions of anthropological and human models, is part of the philosophical dispute between humanism and post- or transhumanism. The conception of man appears different if created in the image and likeness of God, or as the fruit of evolution from primates, or as a transhumanist entity that can be replaced by the robot. The latter vision is rooted in the mechanization of the mind triggered by cybernetics and cognitive sciences and referable to problems of justice theory and political philosophy concerning the inclusion in society of disabled people. In this article I will limit myself to analyzing, against the background of this complex problem, the link between person, legal fiction and the right to disability starting from the criticism addressed by Nussbaum to Rawls based on the convention and following the methodology developed by Marchisio and Curto in order to clarify the legal connection between thirdness, disability, and person.However, I go one step further by including the issue of disability as justice within the evolution of the notion of the legal person, through the inclusion of fictio iuris and rhetorical methodology in positive law, as a criterion for the interpretation of art. 19 CRPD. (shrink)

As a disabled activist, I much prefer Aristotle's concept of ‘eu zen’, or ‘living well’ to that of ‘well-being’. ‘Eu zen’ is part of Aristotle's treatise on ‘eudaimonia’, which Grayling describes as: ‘…. a strong and satisfying sense of well-being and well-doing, of flourishing as only a rational and feeling human individual can flourish when his life and relationships are good’ (emphasis added). Aristotle's concepts are preferable because they promote ‘well-being’ through familial, social and civic activity, whilst recognising that (...) such activity requires resources, both human and material. These concepts are akin to those advocated by disabled people within the ‘independent living movement’; i.e. that the individual's ‘choice’, ‘control’, ‘dignity’ and ‘freedom’, over their lives and lifestyles, are supported by an inclusive community. However, both sets of principles are now being undermined by neoliberal managerial social work practice, which not only deny basic human rights which underpin ‘eu zen’, but lead to fear and a sense of ‘commodification’ or de-personalisation among disabled recipients. Relevant examples will come from experience, both personal as well as that from other disabled people. (shrink)

Modernization in China is accompanied by some specific features: aging, individualization, the emergence of the nuclear family, and changing filial piety. While young Chinese people are still the main caregivers for older adults, understanding the attitudes of young Chinese people toward aging and living independently in the context of modernization is important because it relates to future elderly care problems in China. By using in-depth interviews and qualitative methods, 45 participants were enrolled in the study, 38 were women and (...) 37 had no siblings. The ages ranged from 17 to 25 years. Results revealed that participants held diverse attitudes about older adults, but the general attitudes were that older adults are lonely, financially disadvantaged, have poor social support, lack hobbies, and care about their children more than themselves. Chinese college students were affected both by traditional filial piety and individualism; however, of the two, they seemed put greater value on independence. Moreover, traditional filial piety is changing in a modern direction, affected by Western ideas of individualism: the status of the senior is diminishing, and living with one’s parents is no longer regarded as a necessary component. Implications concerning age stereotypes, elderly care policies, and strategies are discussed. (shrink)

Aurama is a system designed to provide peace of mind and a sense of connectedness to adults who care for elderly parents living alone. Aurama monitors the elders at home using unobtrusive sensor technology and collects data about sleeping patterns, weight trends, cognitive abilities and presence at home. The system provides an unobtrusive ambient information display that presents the status of the elder and lets its users inspect long-term data about the well-being of the elder interactively. Aurama was designed (...) iteratively with substantial user involvement through interviews, prototype evaluation, focus groups and lab tests. The final prototype was evaluated in two field trials each involving an elder and their adult children. The input of users throughout the design process and during these tests demonstrates clearly the potential of awareness systems to support the target user group to obtain peace of mind and feel connected. Furthermore, the users indicate a clear need for information on long-term trends relating to the well-being of aging parents, in contrast to the current emphasis in this field of research on providing instantaneous status information about daily activities and context. (shrink)

Hierarchical organization is an essential characteristic of living things. Although most biologists affirm the concept of living things as hierarchically organized structures, there are widespread differences of interpretation in the meaning of hierarchy and of how the concept of hierarchy applies to living things. One such basic difference involves the distinction between the concept of control hierarchy and classification hierarchy. It is suggested that control hierarchies are distinguished from classification hierarchies in that while the former involve authority (...) relationships between levels, the latter do not. This is illustrated in an analysis of proposed hierarchies of replicators and interactors.The analysis of levels of hierarchies and their relationships also brings up the part-whole problem. An authority relationship between levels implies that the whole has a determining influence on the parts that make up the whole, and that parts have no independent, meaningful existence apart from the whole. The concept of an authority relationship in a part-whole relationship introduces the question of the independence or sovereignty of the components of the subordinate levels in a hierarchically organized living thing. This problem is discussed along with an analysis of the rather novel theory of enkapsis proposed by H. Dooyeweerd, in which he distinguishes part-whole relationships from enkaptic relationships. (shrink)

Substrate independence and mind-body functionalism claim that thinking does not depend on any particular kind of physical implementation. But real-world information processing depends on energy, and energy depends on material substrates. Biological evidence for these claims comes from ecology and neuroscience, while computational evidence comes from neuromorphic computing and deep learning. Attention to energy requirements undermines the use of substrate independence to support claims about the feasibility of artificial intelligence, the moral standing of robots, the possibility that we may be (...) living in a computer simulation, the plausibility of transferring minds into computers, and the autonomy of psychology from neuroscience. (shrink)

In spite of its everyday connotations, the term independence as republicans understand it is not a celebration of individualism or self-reliance but embodies an acknowledgement of the importance of personal and social relationships in people’s lives. It reflects our connectedness rather than separateness and is in this regard a relational ideal. Properly understood, independence is a useful concept in addressing a fundamental problem in social philosophy that has preoccupied theorists of relational autonomy, namely how to reconcile the idea of individual (...) human agency with the inevitable and necessary influence of other people, both directly and indirectly. I derive my account from the work of Mary Wollstonecraft and Catharine Macaulay, whose contributions have remained largely overlooked by current republican theorists. I have three purposes in this chapter. First, I set out the relational character of independence. Secondly, I outline a republican approach to the problem of structural social threats to agency. Finally, I hope to establish the basis for a fruitful dialogue between republicans and relational autonomy theorists on the requirements and dynamics of individual agency and freedom in oppressive social situations. I identify three distinctive features of the internal logic of freedom as independence that give it a relational character: it always locates the person within a community; there is a mediating role played by the notion of arbitrariness in connecting individual and collective perspectives; a causal relationship exists linking each person’s freedom as independence such that that the dependence of one class of persons jeopardizes the independence of the whole community. (shrink)

In a passage through Moritz Schlick’s œuvre, the intention of the present essay is to show the way in which the distinction between knowledge and lived experience, between theoretical and practical decisions—a distinction decisive for the Vienna Circle in general—rests on a definite fundament in Schlick: he develops already in his early work Wisdom and especially in his treatise Problems of Ethics a concept of the social character of man, a character that proves to be—and the principal task of the (...) present essay is to show this—the basis on which the strict separation between knowledge and lived experience appears as a necessary requirement independent of every critique of the conditions of knowledge. Here a key role is granted to Schlick’s concept of play, in terms of which the common determinacy of knowledge and lived experience is thought, a determinacy in which alone they are able to correspond to their social reality. (shrink)

This article documents a project that deals with the application of a generative approach for creating audio-visual narration. The project investigates the possibility of producing spatio-temporal montage, offering a kaleidoscopic view of pre-recorded events. Fragmented narratives synthesize a complex whole, which evolve in space and time according to the viewer's behaviour in space. Thus, the viewer becomes the player of a live, constantly changing puzzle. The aim is to create new experiences derived from the synthesis is being pre-recorded memories, according (...) to kinetic commands. A kaleidoscopic narrative is being created according to users' placement, to their movement in space, and to interaction between them. The system's narratives are different if a single observer is interacting with it via his displacement, or if many observers are moving independently towards different directions or as a group. Two kinds of interaction are being developed: humanmachine interaction and humanhuman interaction. Condensings and rarefactions are perceived by the system as different stimuli, and thus they lead to different audio-visual narratives. The environment created by the system is planned to be both procedural and participatory. It is led by rules and by people at the same time. It reacts to the users' acts and is offered for multiple simultaneous personal readings. When interactive environments are offered for simultaneous readings by a number of users, they are altered in a way that depasses the sum of individual interactions, creating an emergent narrative and a collective memory. Video as a means of projecting recorded memories is being edited by the system in order to provoke new experiences and connotations, through semantic montage. (shrink)

Social action projects provide opportunities for students to practice civic skills by learning about pressing social issues and taking action to address them. So to explore the texture of such projects, this paper illustrates how the pedagogy guiding them can support students to experience their agency as individuals, develop their knowledge of their broader social contexts, and provide opportunities for action. While the value of a relationship between individual agency, social knowledge, and action are richly described in theoretical texts, this (...) paper shows how such principles are extended in one social action project that unfolded in an eighth grade class. Through the use of qualitative methods, I documented and analyzed the project. I share my analysis so to bring teachers and students’ lived experiences with social action projects to light. The paper concludes with recommendations for educators when envisioning and enacting social action projects. (shrink)

Poverty is one of the serious problems of the world. The problem is more severe in Africa. Eritrea is 16 years old young nation got independence from Ethiopia. The economy of the country was quite good during 1993-97. Later, however, Eritrea has been exposed numerous challenges such as drought, famines, war. As a result, the poverty has become more rampant in the country where more than 66 percent people live below poverty line. Some families live on remittances. The government has (...) taken some poverty alleviation measures, the poverty did not come down due to lack of resources and the poor implementation of the program. An attempt is made in the paper to explore the incidence of poverty. It also provides the details of poverty surveys that are conducted since independence. The paper discusses various challenges of the poverty and provides some policy implications. (shrink)

The question whether distributive justice is at bottom practice-dependent or practice-independent has received much attention in recent years. I argue that the problem of intergenerational justice resolves this dispute in favor of practice-independence. Many believe that we owe more to our descendants than leaving them a world in which they can merely lead minimally decent lives. This thought is particularly convincing given the fact that it is us who determine to a significant extent what this future world will look (...) like. However, no practices that would trigger distributive obligations exist between distant generations. Thus, if we have to leave more than a minimum for future generations, we cannot conceive of distributive justice in terms of the justification of ongoing social interactions. Rather we have to think of the entire concept as an idea based on persons’ legitimate interests and capacity for well-being, and which abstracts from participation in particular practices. (shrink)

The fundamental freedoms of speech, conscience, privacy, and religion are now an essential part of the fabric of contemporary society, set down in our most basic laws and regularly invoked in our political and cultural debates. These freedoms play a vital role in securing the spaces and opportunities within which people are able to pursue their own lives in their own ways. Independence of Mind takes this accepted thought a step further, by exploring the ways in which the fundamental freedoms (...) help us to achieve something even more profound, by enabling us to arrive at beliefs, convictions and voices of our own, so that we truly come to think, believe and speak for ourselves in the rich and various ways that the freedoms then protect. Privacy grants us the distance and refuge from others necessary to develop views of our own; freedom of speech calls on us to imagine ways of expressing ourselves that are both true to the views we have developed and innovative in their own right; freedom of conscience enables each of us to create a distinctive rational personality in which to embed the convictions that we wish to treat as non-negotiable; freedom of religion allows groups of us to endorse certain beliefs as articles of faith, free from the full demands of rational scrutiny. Much has been written about the political and legal implications of the fundamental freedoms and their entrenchment in bills of rights. This is the first book to undertake a comprehensive philosophical examination of their moral bases. It offers a penetrating analysis of what makes these particular freedoms matter to us in the ways that they do, and of the true significance of their entrenchment in law. (shrink)

I argue that mind-independence realism should be characterised in terms of what I call 'essential', rather than 'modal', independence from our mental lives. I explore the connections between the two kinds of independence, and argue that characterizations in terms of essence respect more intuitions about what realism is, harmonize better with standard characterizations of anti-realism, and avert the threat of subversion from Blackburn's quasi-realist.

The present essay offers a phenomenological examination of peoples’ experiences of place memory. What is it like when the memory of a place is awoken in the event of daily life? What is it about the experience of certain places that make them significant? How might the experience of strong place memory be described so that it may become better understood? What features anchor a memory of place to our experience of the present? To ask these questions requires an orientation (...) to the lived experience of resonant place. For the purposes of this piece­­­­­­­, two themes – resonance as the realization of independence, and resonance as unsettled expectation – are described as unique structures of human experience. (shrink)

Definition of the problem Assistive technologies, including “smart” instruments and artificial intelligence (AI), are increasingly arriving in older adults’ living spaces. Various research has explored risks (“surveillance technology”) and potentials (“independent living”) to people’s self-determination from technology itself and from the increasing complexity of sociotechnical interactions. However, the point at which self-determination of the individual is overridden by external influences has not yet been sufficiently studied. This article aims to shed light on this point of transition and (...) its implications. Arguments The identification of this “tipping point” could contribute to analysis of familiar issues of conflict between the ethical principles of beneficence and respect for autonomy. When using technology in the living spaces of older adults, relationships, among other factors, may play a crucial role in older adult’s self-determination. We find the tipping point to occur subjectively and variably. To this end, the article combines theoretical ethical considerations with two examples from a qualitative study illustrating the perspective of older adults aged 65–85 years. Conclusion The study of the tipping point underscores the importance of perceiving an older person’s perspective. Particularly at the tipping point, this might be the only way to effectively identify whether the individual concerned perceives their self-determination as externally overridden. In conceptualizing the tipping point itself as well as its variability, we might create the basis for a normative call to shift the tipping point to promote self-determination and prevent overriding the will of older adults. We highlight individual, relational, and societal implications of our findings. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Experiences of the Live Organ Donor: Lessons Learned Pave the FutureDianne LaPointe RudowIntroductionThe experience of a live organ donor is multi–faceted and is as unique as each person who agrees to take a risk to save another. Factors include: type of organ donated (kidney vs. liver), relationship to the recipient (related—biological or non–biological vs. non–related), decision–making and motivation for donation, support systems available within and outside of the transplant (...) program, and outcomes of the donation for both recipient and donor. The variety of experiences is apparent in the narratives within this special issue. I want to thank the authors of each story for sharing their experiences of the live donation process. As difficult as it must have been to write, it was difficult for someone like me, a transplant professional who is a strong advocate for quality donor care, to hear. But with each success and failure of transplantation, we can learn in the hopes of improving things for the next.Despite the fact that the field of transplantation is over 50 years old and the first kidney donors were live donors, viewing the field of live donation as a subspecialty of transplantation is a new concept (LaPointe Rudow, 2011). Live donation is, in fact, as specialized as lung transplant, liver transplant, transplant infectious disease, and kidney transplant. All of those subspecialties have clinicians and researchers with expertise in the area. Live donation experts exist and teams of live donor professionals staff most transplant programs today. Additionally regulatory bodies, professional societies, and advocacy groups strive to improve the care of the live organ donor (Medicare Conditions of Participation, 2007; Organ Procurement and Transplant Network, 2011; National Kidney Foundation 2011). Many years have been spent perfecting the surgical procedure and refining the proper testing to ensure that donation is safe for the donor. Live donation is, however, more than a surgery; in recent years, transplant professionals acknowledge that the psychosocial impact of donation on donors, whether positive or negative, can be significant but it is not yet completely understood.Much debate has occurred as to the components of the psychosocial evaluation, length and type of follow up, and the role of the independent live donor advocate (Amsterdam Forum, 2005; Ommen et al. 2011; Pruett et. al. 2006; Schroder et. al. 2008; Simpson & Pomfret 2012). The ethical concepts of paternalism and autonomy are in tension as we attempt to justify live donation. Perhaps nowhere else is ethical deliberation more vigorous than in the debate regarding whether informed consent for live donation is attainable, driven largely by the plight of the patient and the consequent vulnerability of the donor in an effort to help the patient. These quandaries are illustrated in the compelling narratives of this special issue. [End Page 45]Narrative ThemesBased on an analysis of the narratives, I will present a series of dominant themes that emerged from the stories; these will be exemplified by illustrative quotations from the live donor’s narratives.Live Donation has Psychological Effects on the DonorThere are many psychological effects of live donation both pre–and post–donation. The narratives describe feelings such as “I felt like a hero,” “feelings of anxiety, anger and ambivalence,” “it’s the best thing I ever did,” “I would do it all over again,” “a sense of loss,” and feelings of “suicidal thoughts.” The dichotomy of feelings expressed demonstrates the uniqueness of the live donor experience. One donor has nothing but good things to report regarding his or her experience while another feels lasting ill emotional affects requiring ongoing counseling even though the recipient has done well.Pre–donation psychological issuesTraditionally, the psychosocial evaluation explores the pre–donation emotional and family stressors to ensure that there are no issues or underlying psychiatric disorders that will make donation high risk for psychological complications. All donors writing the narratives were found to be suitable donors. That being said, there is no standardized approach to the psychological evaluation. Organ Procurement and Transplant Network (OPTN)/United Network for Organ Sharing (UNOS) (Organ Procurement and Transplant Network, 2011) have policies and guidelines and the Centers for Medicare Conditions of Participation (COP) (Medicare Conditions of... (shrink)

Abstract In contemporary moral philosophy, the standard way of understanding the constituents of the human good is in terms of a fairly limited number of features that contribute to our happiness independently of how they are situated in our lives. Even when this approach is supplemented by Moorean ideas about organic wholes, it still cannot do justice to the deep importance of how things are situated and even when meaning is seen as an important factor, it still tends to be (...) treated as simply another item on the list of constituents. It is argued here that we should abandon this approach in favor of one that recognizes that our lives are best understood in terms of their narrative structure and that treats narrative meaning as a pervasive phenomenon that strongly influences the importance that different features have in making our lives go more or less well. (shrink)

This paper examines how a person’s life may be shaped by living with a sense of the mystery of reality. What virtues, if any, are encouraged by such a sense? The first section rehearses a radical ”doctrine of mystery’, according to which reality as it anyway is, independently of human perspectives, is ineffable. It is then argued that a sense of mystery may provide ”measure’ for human lives. For it is possible for a life to be ”consonant’ with this (...) sense -- through exercising humility, for example -- and even to emulate mystery. A further section corrects a misunderstanding about the connection between a sense of mystery and the virtues it invites, while a final section considers the relationship between living with mystery and religious faith. (shrink)

Some people live to work, others work to live, while still others prefer to live lives of leisure. Since the Puritans, American culture and literature have been dominated by individuals who have valued hard work. However, shortly after its founding, America managed to produce the leisurely Rip Van Winkle, who, over time, has been followed by kindred spirits such as, for instance, Walt Whitman, Henry David Thoreau, Twain’s Huck Finn, Melville’s Bartleby, Jack Kerouac, Diane di Prima, the Hippies, and Christopher (...) McCandless. With the rise of the Indie Film movement of the 1990s, so came the rise of the slacker film. Films such as Slacker, Singles, Wayne’s World, Reality Bites, Clerks, Kicking and Screaming, Mallrats, Chasing Amy, The Big Lebowski, and Office Space filled theatres over the decade with characters who take an unorthodox view of work and stress the importance of leisure in life. This essay discusses two slacker films, Richard Linklater’s Slacker and Kevin Smith’s Clerks, which defined the slacker phenomenon in the 1990s and constituted two important landmarks in American independent film. While many of us may find the slacker pathetic and annoying, this essay argues that there is much value to be found in this healthy counterculture. By offering their perspectives on issues such as the Puritan work ethic, work-incited self-importance, leisure versus idleness and human relationships, Linklater and Smith join the preceding generations of slackers, providing a much needed balance to the American obsession with work and success. (shrink)

Chronic stroke survivors with severe contralesional arm paresis face numerous challenges to performing activities of daily living, which largely rely on the use of the less-affected ipsilesional arm. While use of the ipsilesional arm is often encouraged as a compensatory strategy in rehabilitation, substantial evidence indicates that motor control deficits in this arm can be functionally limiting, suggesting a role for remediation of this arm. Previous research has indicated that the nature of ipsilesional motor control deficits vary with hemisphere (...) of damage and with the severity of contralesional paresis. Thus, in order to design rehabilitation that accounts for these deficits in promoting function, it is critical to understand the relative contributions of both ipsilesional and contralesional arm motor deficits to functional independence in stroke survivors with severe contralesional paresis. We now examine motor deficits in each arm of severely paretic chronic stroke survivors with unilateral damage to determine whether hemisphere-dependent deficits are correlated with functional independence. Clinical evaluation of contralesional, paretic arm impairment was conducted with the upper extremity portion of the Fugl-Meyer assessment. Ipsilesional arm motor performance was evaluated using the Jebsen-Taylor Hand Function Test, grip strength, and ipsilesional high-resolution kinematic analysis during a visually targeted reaching task. Functional independence was measured with the Barthel Index. Functional independence was better correlated with ipsilesional than contralesional arm motor performance in the left hemisphere damage group [JTHFT: [r = −0.73, p = 0.017]; grip strength: [r = 0.64, p = 0.047]], and by contralesional arm impairment in the right hemisphere damage group [UEFM: [r = 0.66, p = 0.040]]. Ipsilesional arm kinematics were correlated with functional independence in the left hemisphere damage group only. Examination of hemisphere-dependent motor correlates of functional independence showed that ipsilesional arm deficits were important in determining functional outcomes in individuals with left hemisphere damage only, suggesting that functional independence in right hemisphere damaged participants was affected by other factors. (shrink)

The functional independence measure is a clinical scale which is used to evaluate the amount of assistance disabled persons need to conduct their daily living activities. Drawing on 65 video-recorded rehabilitation team meetings and medical records collected from a Japanese hospital, this article utilizes ethnomethodology and conversation analysis to uncover how Japanese rehabilitation team members use the FIM to track changes in the functional status of patients and decide the length of stay in ongoing interactional sequences. Analysis shows that (...) a series of the FIM scores assembled and arranged in situ provide a sequential framework for members to understand the progress of rehabilitation and predict the plateau phase. Moreover, a particular expert is asked about patients’ capacity for further improvements and his or her opinions are treated as a basis for clinical decisions. In this way, diagnostic and clinical decision-making is produced through the ongoing collaborative work of various specialists. (shrink)

The function of law and of constitutional law is to make determinate what we ought to do. And in constitutional law, that is true of both structural provisions and rights provisions. It is not the function of constitutions to establish our real moral rights. We possess those independently of the constitution, which cannot affect them. And all organs of government are bound morally if not legally by those rights. I have taken no position on the relative competence of legislatures and (...) courts to ascertain the content of real moral rights, and it is possible that the judiciary is well-equipped to be our wise Platonic guardians. However, if the game is interpretation, all that can be interpreted are authored rules, and what those rules mean can only be what their authors meant by them. Anything else is reauthoring—that is, creating new rules. There is no “living tree” constitutional interpretation. The only “living trees” are the judges. So you’d better hope that they are well cultivated. And you may conclude that a bit of pruning is in order. (shrink)

Autobiographical memory specificity has been associated with cognitive function, depression, and independence in older adults. This longitudinal study of 162 older adults moving to active supported living environments tracks changes in the role of the ability to recall specific autobiographical memory as a mediator between underlying cognitive function, or depression, and outcome perceived health or independence, across 18 months, as compared with controls not moving home. Clear improvements across time in autobiographical specificity were seen for residents but not controls, (...) supporting the role of a socially active environment, and confirmed by correlation with number of activities reported in diaries, although the impact of diary activities on the effect of time on autobiographical specificity was not found. The role of autobiographical specificity in mediating general cognition and outcome functional limitations was clear for social limitations at 12 and 18 months, but its role in mediating effects of executive function and perceived health persisted throughout. The role of specificity in mediating between depression and perceived health, IADLs, and Functional Limitations persisted throughout. Analysis examining autobiographical specificity and depression as joint mediators between cognition and independence showed a forward effect such that higher specificity scores reduced the negative mediation effect of depression on independence. Finally, data showed the reduction of many of these mediations over time, supporting the role of autobiographical memory in times of change in a person's social situation. Data support potential autobiographical memory intervention development. (shrink)

BackgroundThe bioethical debates concerning living donation and surrogacy revolve around similar ethical questions and moral concepts. Nevertheless, the ethical discourses in both fields grew largely isolated from each other.MethodsBased on a review of ethical, sociological and anthropological research this paper aims to link the ethical discourses on living kidney donation and surrogacy by providing a comparative analysis of the two practices’ relational dimension with regard to three aspects, i.e. the normative role of relational dynamics, social norms and gender (...) roles, and reciprocity. Based on this analysis, we derive conclusions for the framing of living organ donation and surrogacy in ethical theory and practice.ResultsFirst, our analysis emphasizes the relevance of acknowledging the complex relational implications of living kidney donation and surrogacy. Underestimating this relational dimension may not only lead to individual crises but endanger existing as well as newly emerging familial relationships. Second, we point out differences in the normative assessment of social norms and gender roles in the ethical debates about living kidney donation and surrogacy. In particular, we show how different evaluations of altruism affect the understanding of autonomy in both contexts. In addition, we sensitize for biased perceptions of gender roles. Finally, we argue that challenges resulting from unresolved reciprocity are an issue in living kidney donation and surrogacy independent of whether the exchange of body parts or bodily services is framed as a gift or commercial exchange. By pointing out the limits of financial compensation, we stress the relevance of non-material, relational rewards as potential remedy. (shrink)

Because it is significantly unclear what ‘meaningful’ does or should pick out when applied to a life, any account of meaningful living will be constructive and not merely clarificatory. Where in our conceptual geography is ‘meaningful’ best located? What conceptual work do we want the concept to do? What I call agent-independent and agent-independent-plus conceptions of meaningfulness locate ‘meaningful’ within the conceptual geography of agent-independent evaluative standards and assign ‘meaningful’ the work of commending lives. I argue (...) that the not wholly welcome implications of these more dominant approaches to meaningfulness make it plausible to locate ‘meaningful’ on an alternative conceptual geography — that of agents as end-setters and of agent-dependent value assessments — and to assign it the work of picking out lives whose time-expenditures are intelligible to the agent. I respond to the challenge confronting any subjectivist conception of meaningfulness that it is overly permissive. (shrink)

Understanding why individuals opt out of living donation is crucial to enhancing protections for all living donors and to identify modifiable barriers to donation. We developed an ethical approach to conducting research on individuals who opted out of living kidney donation and applied it in a small-scale qualitative study at one US transplant centre. The seven study participants had varied reasons for opting out, the most prominent of which was concern about the financial burden from lost wages (...) during the postoperative period. Several reported feeling alone during their decision-making process. Although no participants used an alibi, a centre-provided statement of non-eligibility to donate, all believed that centres should offer alibis to help preserve donor autonomy. Given the complexity of participants' decisions and the emotions they experienced before and after deciding not to donate, we suggest approaches for independent living donor advocates to support this population. This study demonstrates that research on individuals who opt out of donation is feasible and yields valuable insight into methods to improve the evaluation experience for potential living donors. (shrink)

Editorial independence is crucial for the viability of a journal and editors have many masters - the public, the readers, the authors and the owners. Negotiating the resultant minefield requires a purposeful and independent stance. This is particularly so in instances of a relatively modern phenomenon: concerted attempts by clinical groups to influence, or even abort, publication of articles, which may threaten their practice. Moreover, modern social media facilitates this manipulation.

This study combines author's experiences as an analyst of post-Soviet politics and religious liberty with personal participation in the founding and public acceptance of a new faith in independent Ukraine during a quarter- century. Theattempt here is not only to describe a specific outcome, but to propose factors that offer explanation for why Ukraine is among the few Communist successor states in which new minority faiths have been relatively successful in achieving full toleration [Biddulph: 2016]. Religious liberty has been (...) described as the “first freedom of all freedoms” [Hertzke: 2013, 4], yet it has been noticeably unachieved globally. A 2007 Pew “Global Attitudes Survey” showed that 90% of respondents world-wide said that it was important to live in a country that enabled them to practice religion freely. Yet a more recent Pew “Forum on Global Restrictions on Religion” found that 70% of the world population reside in countries which have high or very high restrictions on religion either from government actions or from major social hostilities [Grim: 2013, 86]. Religious liberty, therefore, is an almost universal human aspiration, but is one of the more unachieved rights in the world. The Soviet Union successor states have a similar record of lower achievement [Lunkin: 2013; Grim: 2013]. (shrink)

Feminist research on community care and ‘informal carers’ identified this as a women's issue but failed to address the interests and experiences of older and disabled women – those who received ‘care’ One consequence is that such feminist research has implicitly, and sometimes explicitly, undermined disabled women's rights to a home, children and personal relationships. Using qualitative research, the article highlights the actual experience of women whose physical impairment means that they need help with daily living activities, looking at (...) the different circumstances in which such help is received. The disability movement's concept of ‘independent living’ raises particular issues for disabled women. ‘Independent living’ is about having choice and control over the assistance needed, rather than necessarily doing everything for yourself. However, gender inequalities may also inhibit the choice and control that women have in their lives. Assistance can be given within a personal relationship as an expression of love, but disabled women may also experience abusive, restrictive or exploitative relationships. Public services do not generally provide assistance in a way which enables a woman to have choice and control in her life, or even to carry out child-caring or homemaking tasks. The research on the various ways of receiving personal assistance found that those women who were able to purchase their own help were most likely to be living independently, in the sense of exerting choice and control in their lives. Feminist research can help to create a space for disabled women's absent voices, and add to the pressure for change in the way that personal assistance needs are met. This is a human and civil rights issue which has a key impact on the control that disabled women have over their lives. (shrink)

To become a public figure or celebrity, I claim, is to exist alongside a zombie version of yourself. This zombie shares the same name and physical likeness but operates independently of its flesh-and-blood counterpart. In fact, public figures do not have any special authority over the zombie version of themselves, and in some contexts, they enjoy less authority over their zombie counterparts than others do. In the US, for example, public figures are not legally entitled to protections against criticism via (...) parody, which can include unauthorized use of their likeness for offensive images, insulting jokes, and other forms of public mockery. As Michel Foucault observed, a work is entitled to become the “murderer” of its author, which suggests that the author’s name exists among the living dead. An artist’s works can bear their name yet operate independently of their attitudes or mental states. In June of 2019, the master rights to Taylor Swift’s first six albums were sold without her knowledge or consent, effectively “murdering” her rights as their author. Swift’s 2019 decision to re-record her first six studio albums can thus be understood as an act of institutional revenge, a way to get back at the people who have wielded power over her and the institutions that enable exploitation—a battle with her zombified works: the “stolen” original albums. In this chapter I sketch an institutional theory of celebrity names to explain the institutional, personal, and political significance of self-appropriation, using Taylor Swift’s act of re-recording her own music as a paradigm case. (shrink)

after retiring from the practice of law in 2010, I pursued my love of philosophy. I have had the good fortune to become involved with the scholarly philosophical community, to write a small number of reviews and articles, and to present papers for conferences of the Josiah Royce Society, the APA, and the Metaphysical Society of America.As it did for so many, the pandemic led me to a time of increased solitude and reflection. I wanted to think philosophically about American (...) democracy and its ideals as the country struggled both with the pandemic and with widespread dissension and anger.The Pluralist's call for papers inviting its readers to explore their philosophical lives during the pandemic stimulated further... (shrink)

Argues that the Innocent Nation myth prevented many Americans from understanding, or even discussing, the complex motivations of the 9/11 terrorists. Identifies five key myths that lie at the heart of the American experience -- the myths of the Chosen Nation, of Nature's Nation, of the Christian Nation, of the Millennial Nation, and of the Innocent Nation. Drawing on a range of dissenting voices, Hughes shows that by canonizing these seemingly harmless myths of national identity as absolute truths, America risks (...) undermining the sweepingly egalitarian promise of the Declaration of Independence. (shrink)

This paper traces how media representations encouraged enthusiasts, youth and skilled volunteers to participate actively in science and technology during the twentieth century. It assesses how distinctive discourses about scientific amateurs positioned them with respect to professionals in shifting political and cultural environments. In particular, the account assesses the seminal role of a periodical, Scientific American magazine, in shaping and championing an enduring vision of autonomous scientific enthusiasms. Between the 1920s and 1970s, editors Albert G. Ingalls and Clair L. Stong (...) shepherded generations of adult ‘amateur scientists’. Their columns and books popularized a vision of independent non-professional research that celebrated the frugal ingenuity and skills of inveterate tinkerers. Some of these attributes have found more recent expression in present-day ‘maker culture’. The topic consequently is relevant to the historiography of scientific practice, science popularization and science education. Its focus on independent non-professionals highlights political dimensions of agency and autonomy that have often been implicit for such historical actors.The paper argues that the Scientific American template of adult scientific amateurism contrasted with other representations: those promoted by earlier periodicals and by a science education organization, Science Service, and by the national demands for recruiting scientific labour during and after the Second World War. The evidence indicates that advocates of the alternative models had distinctive goals and adapted their narrative tactics to reach their intended audiences, which typically were conceived as young persons requiring instruction or mentoring. By contrast, the monthly Scientific American columns established a long-lived and stable image of the independent lay scientist. (shrink)

Activities of daily living are usually defined as skills needed in typical daily self-care. Instrumental activities of daily living are more complex skills beyond basic self-care, and their measurement evaluates how individuals function in their homes, workplaces, and outdoor environments. The skills that pertain to IADLs are exposed to dysfunctions resulting from aging or illness. Reductions in those skills may begin to cause problems with independence but these problems can be solved with the help of others - for (...) example, family members, social workers, and nurses. (shrink)

Ever since the start of the twentieth century, a growing interest and importance of studying fatwas can be noted, with a focus on Arabic printed fatwas (Wokoeck 2009). The scholarly study of end-of-life ethics in these fatwas is a very recent feature, taking a first start in the 1980s (Anees 1984; Rispler-Chaim 1993). Since the past two decades, we have witnessed the emergence of a multitude of English fatwas that can easily be consulted through the Internet (‘e-fatwas’), providing Muslims worldwide (...) with a form of Islamic normative guidance on a huge variety of topics. Although English online fatwas do provide guidance for Muslims and Muslim minorities worldwide on a myriad of topics including end-of-life issues, they have hardly been studied. This study analyses Islamic views on (non-)voluntary euthanasia and assisted suicide as expressed in English Sunni fatwas published on independent—i.e. not created by established organisations—Islamic websites. We use Tyan’s definition of a fatwa to distinguish between fatwas and other types of texts offering Islamic guidance through the Internet. The study of e-fatwas is framed in the context of Bunt’s typology of Cyber Islamic Environments (Bunt 2009) and in the framework of Roy’s view on the virtual umma (Roy 2002). ‘(Non-)voluntary euthanasia and assisted suicide’ are defined using Broeckaert’s conceptual framework on treatment decisions at the end of life (Broeckaert 2008). We analysed 32 English Sunni e-fatwas. All of the e-fatwas discussed here firmly speak out against every form of active termination of life. They often bear the same structure, basing themselves solely on Quranic verses and prophetic traditions, leaving aside classical jurisprudential discussions on the subject. In this respect they share the characteristics central in Roy’s typology of the fatwa in the virtual umma. On the level of content, they are in line with the international literature on Islamic end-of-life ethics. English Sunni e-fatwas make up an influential and therefore important developing body of Islamic orthodox normative authority on end-of-life ethics that is still open for further research. (shrink)

Crafted within a knowledge-first epistemological framework, Mona Simion’s engaging and wide-ranging work ensures that both the Knowledge Norm of Assertion (KNA) and Classical Invariantism (CI) can be part of a viable and productive research program.Dissatisfied with current strategies on offer in the literature, she successfully counters objections to the pair sourced in “shiftiness intuitions”—intuitions that seem to indicate that mere changes in practical context can impact the propriety of assertions and knowledge attributions. For example, in Keith DeRose’s famous pair of (...) low stakes versus high stakes bank cases, the consequences of Keith’s acting on The bank is open on Saturday if it were false change from trivial in low stakes to catastrophic in high stakes. We are to suppose that the proposition is true, and that Keith has access to the same quantity and quality of evidence for it in both cases. In low stakes, but not in high stakes, we are inclined to think that Keith can appropriately assert to his inquiring wife “The bank is open on Saturday.” In low stakes, Keith’s knowledge ascription “I know that the bank is open on Saturday” strikes us as aptly asserted and true. In high stakes only a knowledge denial on Keith’s part strikes us as aptly asserted and true.If we want to hang on to KNA, it looks like we will have to abandon CI and concede that ‘knows’ or knowledge is sensitive to changes in practical considerations. If we want to retain CI, we can try to say that, while Keith does still know that the bank is open on Saturday in high stakes, he does not have sufficient warrant to properly assert that it is. But such a move seems to run counter to KNA. We appear to be stuck in the Shiftiness Dilemma.Keen to get us out of the dilemma and to preserve the idea that epistemically good thinking and asserting are independent of practical concerns, Simion suggests a strategy that can also be used to protect other epistemic speech-act norms and notions from similar threats of practical shiftiness. She notes that having an impact on the degree of epistemic warrant required is not enough to make a norm an epistemic one. Fair enough. If I am given strong practical reason (a million dollars, or a gun to the head) not to adopt full belief until I have gathered more evidence, there is potentially some nonepistemic norm at work in the demand for further evidence. So it is a live possibility (indeed, a plausible one, as Simion would say) that our intuitions in the Shiftiness Dilemma are being misdescribed: they are tracking all-things-considered propriety of assertion, not epistemic propriety. In high stakes, practical norms override the epistemic norm KNA. Keith’s asserting “The bank is open on Saturday” would be epistemically proper but all-things-considered improper.Simion backs up her account with an etiological-function origin story and typology for the norms of assertion. Here is her characterization of etiological function for traits, artifacts, and actions. E-function.A token of type T has the e-function of type B of producing effect E in a system S iff (1) tokens of T produced E in the past, (2) producing E resulted in benefit of type B in S/S’s ancestors, and (3) producing E’s having B-benefited S’s ancestors contributes to the explanation of why T exists in S.In this schema, norms governing an action are typed by the functions or purposes of the action, which in turn are typed by the benefits the action delivers. The epistemic norm of assertion will be the one that characteristically and reliably enables participants in the practice of assertion to secure its primary epistemic good, which Simion identifies as knowledge (testimonial knowledge in hearers generated under normal conditions by the assertions of knowledgeable speakers). Moves in a practice either directly or indirectly aim at fulfilling the goal of the practice. Assertion is a move in the practice of inquiry, which has the generation of knowledge as its aim. Hence, Simion concludes, assertion aims at generating knowledge.This account helps to explain why, in cases like high stakes, Keith all-things-considered ought not to assert “The bank is open on Saturday,” even though he knows it is true. Prudential norms of assertion override the epistemic KNA, for when multiple functions come into conflict, the ones that are more important to the survival of the organism will generate weightier normative constraints.Simion then applies her account to the general category of constatives—for example, speech acts that express a speaker’s belief and the intention that the hearer form or continue to hold the like belief. Employing the taxonomy of Bach and Harnish, she argues that, as expressions of belief and hence varieties of assertion, constatives are subject to knowledge norms as well. Bach and Harnish identify fifteen different subcategories of constatives, each characterized in terms of the kind of belief and intention they express. The norms governing a species have to be at least as strong as the norms governing the corresponding type. As species of the type assertion, each subcategory, then, is subject to at least the necessary direction of KNA. Ultimately, we arrive at a knowledge norm for every speech act on the list, such as The Knowledge Norm of Conjecture (KNC):One’s conjecture that p is epistemically permissible only if one knows that there is reason, but not sufficient reason, to believe that p. Most of the proposed interpretations of various constatives are on the whole reasonable enough, though J. L. Austin would surely be unhappy to see so many different speech acts fashioned into varieties of assertion. Simion concludes with reflections on conjecturing, telling, and moral assertion.Construing the challenge of shiftiness intuitions in terms of the Shiftiness Dilemma allows Simion to declare success when the compatibility of KNA and CI with the relevant data of intuition is secured. Ensuring empirical adequacy for an explanatory framework is an important step, but pronouncements of victory by way of inference to the best explanation would be premature.Other candidates have been shown to match KNA’s familiar explanatory successes (involving lottery propositions, Moorean statements, etc.). Unlike KNA, alternatives that require only epistemically justified or rational belief or credence can allow that a subject is epistemically proper to assert what they believe when their belief is epistemically rational, even under conditions where there are defeating reasons that they are not in a position to be aware of. Furthermore, such norms seem better suited for philosophical or heated moral discussions where there is little consensus and individuals routinely fail to know that what they assert is true. Simion sounds the alarm that the Shiftiness Dilemma threatens to generalize “to epistemic normativity as a whole” (xi–xii), but norms concerning rational credence seem particularly immune.As Simion notes, the etiological-function model of norms that she proposes could be rebuilt with a different central epistemic aim at its core. Indeed, Millikan-inspired models along these lines are appealed to in other areas in philosophy where the concept of information takes center stage—a concept that may be more amenable to rigorous definition and use in dialogue with the sciences than knowledge. We can wonder, also, what special weight the etiological-function model accords to a knowledge-first perspective on epistemic normativity when the model is malleable in this way.The effectiveness of Simion’s strategy for shielding epistemically good thinking and assertion from practical shiftiness becomes less apparent when we try to apply it to Keith’s belief or judgment that the knowledge ascription/denial he asserts is true. It is unclear whether we are to suppose that, in high stakes, Keith epistemically ought to believe/judge that his asserted knowledge denial is false, but all-things-considered he ought to believe/judge that it is true. We do not have to accept that the knowledge-first, etiological function account of normativity for assertion carries over to belief, of course, but then what progress have we made in accounting for the shiftiness in Keith’s judgment that he knows the bank is open on Saturday in low stakes but not in high stakes?Furthermore, there are other ways to generate problems for fallibilist Classical Invariantists in low versus high stakes pairs of cases. Here is a simplified version of a puzzle from the debate over pragmatic encroachment. Consider low cases where you meet the invariant standards for knowing that p, but your justified confidence falls short of certainty. Among these cases, there must be some where you also meet the invariant standards for knowing that if p is true, then among your choices of action ϕ-ing results in the best overall outcome. Say, for instance, that you have a machine with a ϕ button, and your machine, which you know to be extremely reliable, tells you what the cost or benefit will be if you push the button and p is true versus if p is false. If you ϕ (push the ϕ button) and p is true, you win one hundred dollars; if you ϕ and p is false, you lose one hundred dollars. You face the choice: to ϕ or not to ϕ. Since you know that p, and you know that if p is true, then among your choices of action ϕ-ing results in the best overall outcome, you rationally conclude that ϕ-ing results in the best overall outcome, and hence that you ought to ϕ. If you know which choice of action has the best overall outcome, that is what you all-things-considered should do. Now consider high, where the quantity and quality of your evidence for p is the same, and you still know that your machine is extremely reliable. This time, however, the machine tells you that if you push ϕ and p is true, you win one hundred dollars, but if you push ϕ and p is false, you lose $1 million. Your rational confidence in p is not high enough to justify pushing the button, so you rationally conclude that you ought not to ϕ. Since in high nothing evidentially relevant has changed (all that has changed is the machine informing you of a new, more serious cost of acting on p if p is false), the classical invariantist will have to say that you still know that ϕ, and you still know that if p is true, then among your choices of action ϕ-ing results in the best overall outcome. So, according to CI, you should still be able to reason properly as follows: you know that p, and you know that if p is true, then among your choices of action ϕ-ing results in the best overall outcome, so you know that ϕ-ing results in the best overall outcome, hence you ought to ϕ. Classical invariantists owe us an explanation concerning how we can avoid the paradox here without conceding that knowledge is practically shifty. (shrink)

Recent discussions in cognitive science and the philosophy of mind have defended a theory according to which we live in a virtual world akin to a computer simulation, generated by our brain. It is argued that our brain creates a model world from a variety of stimuli; this model is perceived as if it was external and perception-independent, even though it is neither of the two. The view of the mind, brain, and world, entailed by this theory has some (...) peculiar consequences which have rarely been explored in detail. This paper sets out virtual world theory and relates it to various central philosophical problems, the role of the perceiver and the problem of the existence of the external world ). The second part suggests three interpretations of virtual world theory, two familiar ones and a somewhat less familiar one. The remainder of the paper argues that the irrealist interpretation is the one we should adopt. (shrink)

Cultural differences in daily emotions were investigated by administering emotion questionnaires four times a day throughout a one-week period. Respondents were American students, Japanese students living in the United States, and Japanese students living in Japan. Americans rated their emotional lives as more pleasant than did the Japanese groups. The dimension of emotional pleasantness (unpleasant-pleasant) was predicted better by interdependent than independent concerns in the Japanese groups, but this was not the case in the American group where (...) the variance predicted by interdependent and independent concerns did not significantly differ. It is argued that cultural differences in the concerns most strongly associated with pleasantness are related to differences in ideals, norms, and practices of what it means to be a person. Cultural differences in the concerns are assumed to implicate differences in the nature of emotional experience. (shrink)

Survivors of childhood brain tumors face many obstacles to living independently as adults. Causes for lack of independence are multifactorial and generally are investigated in terms of physical, cognitive, and psychosocial treatment–related sequelae. Little is known, however, about the role of expectation for survivors’ function. From a mixed–methods study including qualitative interviews and quantitative measures from 40 caregiver–survivor dyads, we compared the data within and across dyads, identifying four distinct narrative profiles: (A) convergent expectations about an optimistic future, (B) (...) convergent expectations about a less optimistic future, (C) non–convergent expectations about a less optimistic future, and (D) non–convergent expectations about an unclear future. Dyads both do well and/or struggle in systematically different manners in each profile. These profiles may inform the design of interventions to be tested in future research and help clinicians to assist families in defining, (re–)negotiating, and reaching their expectations of function and independence. (shrink)

Hugo Tristram Engelhardt Jr. is a philosopher and a physician who has devoted all his life and all his creative power to developing and promoting a Christian bioethics. At the same time, the American is a personality who polarizes and has received euphoric praise on the one hand and malicious criticism on the other. This has already been the case during his lifetime and will presumably remain so even after his death, which we wish to commemorate here. In the following (...) contribution I intend to investigate why Engelhardt provokes so different reactions in the scientific community, and I will try to bring closer together the two seemingly irreconcilable parties of Engelhardt admirers and Engelhardt critics. I will do this by focusing on the two most controversial aspects of his research, his critique of the status quo and his concept of an independent Christian bioethics. (shrink)

In recent years, much attention has been paid to how older people living at home can remain independent and manage their illness themselves, while less attention has been given to those who have become frail and need assistance with challenges of everyday life. In this article, I drew on Latimer's formulation of care for frail older people as relational and world‐making and on Foucault's work related to the care of the self in developing an understanding of how frail (...) older persons manage to live well at home in the final years of their lives. I use data from an ethnographic study of home care nursing in the homes of 15 frail older people to develop an understanding of how their care at home can be developed. The participants were holding on to life, which reflected their vitality and vulnerability as well as agency in continuing to explore ways to preserve and build their world at home. With declining ability and stamina relations with material things, relatives and official care workers become of central importance in holding on to life. Home care services can be thought of as part of life, as world‐forming, where workers contribute to daily activities that support living well at home. (shrink)