This paper provides both an overview of and a personal perspective on the field of ‘anti-ageing’. In the late 20th century, progress in the science of ageing re-invigorated activity designed to avoid biological ageing. For some the objective was to abolish the need to die of old age. This anti-ageing movement includes a diverse range of people: hard scientists working in well-funded and established university laboratories, slick corporate-marketing executives and new-age entrepreneurs selling herbal elixirs. The movement has attracted anti-anti-ageing critical (...) comment from three sources: moral critique located in philosophy and religion, scepticism from established scientists in the field of biology and gerontology, and challenge from critical social gerontology. Anti-ageing activists have labelled their critics as ‘conservative’ for opposing the inevitable progress of science. The paper argues that the alternative perspective, which sees the anti-ageing movement as a route by which a biologisation of old age inhibits people from achieving a culturally valued final part to life, is the progressive one. (shrink)

By now, the laboratory tradition, crafting transportable knowledge that allows for comparison, has been amply studied. However, other knowledge traditions, notably that of the clinic, deserve further articulation. The authors contribute to this by unraveling some specificities of rehabilitation practice. How do laboratory and clinical traditions in rehabilitation relate to independence? The first seeks to quantify people's independence; the latter attends to qualitatively different ways of being independent. While measuring independence is a matter of aggregating scores on a priori established (...) dimensions, clinical rehabilitation concerns coordinating different ways of being independent. While independence scales map a linear development in time, rehabilitation participants juggle with time, including uncertain futures in their present. In clinical practice, then, independence is neither a single, coherent, fact nor a clear-cut, stable goal. Instead, professionals as well as patients work by creatively doctoring with the large variety of elements that are relevant to daily life with long-term disabilities. (shrink)

This article identifies and explores the realm of ‘social nothingness’: objects, people, events and places that do not empirically exist, yet are experienced as subjectively meaningful. Taking a phenomenological approach, I investigate how people perceive, imagine and reflect upon the meanings of unlived experience: whatever is significantly not present, never appeared or cannot happen to them. These ‘negative symbolic social objects’ include no-things, no-bodies, non-events and no-where places: for example, rejected roles, unpursued careers or absent people. Reversing some key concepts (...) from phenomenology, I examine the process of ‘negative noesis’ in three aspects. ‘Negative intentionality’ describes people’s motivational stance towards absent things, such as feelings of missing, wishing, haunting, avoidance or surrender. ‘Negative embodiment’ is the corporeal grounding of negational acts, through experiences of impairment, incapacity, severance, disturbance and decline. ‘Negative temporality’ describes the recognition of past or future impossible selves and their place within biographical identity stories. (shrink)

Studies of heteronormativity have emphasized its normative content and repressive functions, but few have considered the strategic use of heteronormative and homonormative precepts to shape sexual selves, public identities, and social relations. Adopting an interactionist approach, this article analyzes interviews with homosexual elders to uncover their use of heteronormative premises to pass as heterosexual. Informants also used homonormative precepts, grounded in a postwar, pre-gay liberation assimilationist homosexual politics they adopted in their early years and maintained in later life, to justify (...) passing and to frame their understanding and evaluation of past and present homosexual practices. Viewed through a homonormative lens, heteronormativity provided the tools for personal survival in a hostile society and for the collective production of a respectable homosexual culture. Informants’ strategic use of heteronormativity can help explain heteronormativity’s survival despite the incoherence and fragility of its content. (shrink)

This contribution intends to explore patients’ lived experience, with a focus on the temporal dimension. On the basis of a qualitative study that led me to interview persons with Parkinson’s disease, caregivers, and medical professionals, I develop an empirical and philosophical investigation of the temporalities surrounding the implementation of deep brain stimulation in Greece. I raise the issue of access to DBS medical care, and show how distinct temporalities are implied when the patients face such a matter: that of linear (...) time, linked with the medical discourse, the bureaucratic time linked to administrative and financial hurdles in the implementation and maintenance of DBS, and the technological time of the body/technology fusion. I consider initially the impact of technology and health care settings on the lived experience of patients and the enactment of multiple bodies which are interrelated with the social world. I then expand my analysis in order to show that this experience cannot be a solipsistic one, or specific to one physician/patient relationship. It is fully socially shaped. (shrink)

This paper examines parents experiences of medical decision-making and coping with having a critically ill baby in the Neonatal Intensive Care Unit (NICU) from a cross-cultural perspective (France vs. U.S.A.). Though parents experiences in the NICU were very similar despite cultural and institutional differences, each system addresses their needs in a different way. Interviews with parents show that French parents expressed overall higher satisfaction with the care of their babies and were better able to cope with the loss of their (...) child than American parents. Central to the French parents perception of autonomy and their sense of satisfaction were the strong doctor–patient relationship, the emphasis on medical certainty in prognosis versus uncertainty in the American context, and the sentimental work" provided by the team. The American setting, characterized by respect for parental autonomy, did not necessarily translate into full parental involvement in decision-making, and it limited the rapport between doctors and parents to the extent of parental isolation. This empirical comparative approach fosters a much-needed critique of philosophical principles by underscoring, from the parents perspective, the lack of emotional work" involved in the practice of autonomy in the American unit compared to the paternalistic European context. Beyond theoretical and ethical arguments, we must reconsider the practice of autonomy in particularly stressful situations by providing more specific means to cope, translating the impersonal language of rights" and decision-making into trusting, caring relationships, and sharing the responsibility for making tragic choices. (shrink)

This article examines the temporality of organ transplantation with a focus on memoirs where the recipient has received an organ from a deceased donor. I argue that death constitutes life. That is, this absent presence – that the organ is materially present but the person is dead and therefore absent – is the foundation for rethinking relationality as constituted through the haunting presence of those who remain central to the continuity of life but who are not alive in any strict (...) definition of the term. This article is therefore attentive to the various meanings of haunting, drawing on queer theory to show how narratives of haunting are derealised experiences and thus a struggle for epistemological authority over specifically transplantation and relationality more broadly. It draws out how these epistemological challenges reimagine ontology as a haunted experience, and thus an intimate tie between the living and the unknown – and somewhat present – dead. (shrink)

Narrative medicine is one of medicine’s most important internal reforms, and it should be a critical dimension of healthcare debate. Healthcare reform must eventually ask not only how do we pay for healthcare and how do we distribute it, but more fundamentally, what kind of healthcare do we want? It must ask, in short, what are the goals of medicine? Yet, even though narrative medicine is crucial to answering these pivotal and inescapable questions, it is not easy to describe. Many (...) of its core claims go against the grain of common sense thinking about medicine. This article argues that the best way to understand narrative medicine is to tell a story that puts its emergence in historical context. (shrink)

Gynecological surgery prompts women to consider the meanings of their uteruses and ovaries, generally taken for granted as “natural” components of female bodies. Analysis of 44 in-depth interviews with women who underwent hysterectomy indicates that a preponderance of respondents conceptualized a socially constructed hormonal hierarchy based on the degree to which ovaries were excised in the course of surgery. While retained ovaries may not always produce actual physiological benefits, respondents placed great symbolic value on ovaries as the source of female (...) normality. This reflects cultural understandings that hormones produced by the ovaries are the essential determinants of sexual difference. The interweaving of social constructionist and biological perspectives in respondents' narratives helps to elucidate the complicated interaction between the material body and the social body. (shrink)

This study explored how women with a diagnosis of cancer (lymphoma) deal with moral concerns related to their responsibility as parents. Ten women with cancer and who had children living at home were interviewed. The interviews were analysed according to the constant comparative method used in grounded theory. In order to provide a focus for the analysis, the ethics of care and the concept of mothering were used as sensitizing concepts. The core concept ‘experience of dealing with moral responsibility of (...) being a parent with cancer by redefining oneself as a mother’ was identified. The processes involved were: interrupted mothering; facing the life-threatening illness and children’s reactions; striving to be a good mother; attempting to deal with moral responsibility; and coming to terms with being a mother. (shrink)

The illness immersion condition prevents patients from enjoying everything worth living life for. In any case, according to Frank, this condition could represent one of the most insightful experiences towards understanding the meaning of life. Using the metaphor of phoenix taken from May, Frank identified four kinds of embodiments through which the phoenix can reveal itself in a patient after an illness immersion experience: the phoenix that could ever be and the phoenix that might have been; the recurrent and cumulative (...) phoenix and the reluctant phoenix. Based on these considerations, a qualitative study was conducted in order to give voice to the different phoenix embodiments focusing on several autobiographies of patients afflicted with severe or terminal illness. The analysis highlights several similarities that the different phoenixes shared ; however, a deep difference emerged in their worldview which proves able to lead them towards different epiphanies. These evidences reveal that every sick person should be understood, stimulated and accompanied throughout his lived experience of illness by an expressly designed and dedicated care. (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)

It is not uncommon that nurses are unable to meet the normative expectations of chronically ill patients. The purpose of this article is to describe and illustrate Walker’s expressive-collaborative view of morality to interpret the normative expectations of two women with multiple sclerosis. Both women present themselves as autonomous persons who make their own choices, but who also have to rely on others for many aspects of their lives, for example, to find a new balance between work and social contacts (...) or to find work. We show that their narratives of identity, relationship and value differ from the narratives that others use to understand and identify them. Since identities, relationships and values give rise to normative expectations, in both cases there is a conflict between what the women expect of their caregivers and vice-versa. The narratives also show that two similar persons with multiple sclerosis may need very different care. This implies that nurses caring for such persons should listen carefully to their stories and reflect on their own perceptions of self. (shrink)

This thesis examines the practice of haemodialysis and kidney transplantation, the two medical therapies available for persons with kidney failure, from a phenomenological perspective. A basic assumption made in the thesis is that contemporary biomedicine is deeply embedded in the cultural, historical, economic, and political circumstances provided by the particular local, national, and transnational contexts in which it is practiced. The aim of the thesis is twofold. On the one hand, the aim is to examine the forms of person- and (...) patienthood enacted and negotiated in haemodialysis and kidney transplantation care and in the daily lives of persons with kidney failure. On the other hand, the aim is to investigate the ways in which the enacted and negotiated forms of person- and patienthood are culturally embedded and normatively charged. In order to examine and investigate this twofold aim, an empirical material has been gathered that comprises observations and in-depth interviews with patients and caregivers at four haemodialysis units, one in Riga, Latvia, and three in Stockholm, Sweden. The theoretical approach and methodology of the study is cultural and phenomenological in character, drawing on an ethnological and anthropological understanding of culture as processual and relational, and on a phenomenological understanding of personhood as embodied and intertwined with the surrounding world. The thesis shows that patients’ encounters and attempts to deal with the diagnoses and treatments associated with kidney failure are complex and often misalign them with the normatively charged orientations enacted and recommended by medicine. The complex situation that emerges when they undergo transplantation, for example, stands in stark contrast to the widespread official view of organ transplantation as a self-evidently health-bringing and normalising therapy. Through their repeated and extensive experiences of undergoing haemodialysis and living with the disease, patients eventually become able to create a synthesis between their lived experiences of their own body and their body as a medical object – what in the thesis is called a ‘sick body’ – a synthesis that allows them to reorient themselves in life and experience a sense of direction. This process relies, to a large extent, on the temporal structure that haemodialysis affords life; it is by repeatedly undergoing the treatment that patients become able to create a sick body. Even so, many of them find this temporal structure problematic; they experience it as disruptive of their control and future-orientedness and as causing an existentially difficult-to-handle boredom. The thesis also shows that the political developments and the norms prevalent in the two national contexts studied greatly affect the orientations of the treatment practices and the participants’ lives. In both Riga and Stockholm, ideals of freedom, activity, control, and self-actualisation influence what forms of patienthood and personhood are enacted. The study indicates that persons who fall ill with a serious and chronic disease only gradually become able to understand and actively cope with their differently embodied circumstances of life. This suggests that medical professionals should not too hastily enlist their patients as experts on their own bodies, but rather provide them with the time and support necessary for making repeated attempts at creating and maintaining a life with a sick body. (shrink)

A diagnosis of glioblastoma multiforme, a World Health Organisation grade IV brain tumour, is devastating for patients and their families who bear the impetus of caregiving. GBM caregivers act as de facto health professionals when their loved ones are discharged prematurely from hospitals. Faced with complex healthcare needs, GBM caregivers report the highest psychological burden, and highest unmet needs of all cancer caregivers. Despite this, they rarely accessed rehabilitation services. Researchers hardly engaged with their stories. The current research on GBM (...) caregiving is predominantly from a biomedical perspective, not only offering limited understandings of psychosocial experiences, but also, evidencing the need for caregiver stories in caregiving research. The researcher recruited 7 bereaved caregivers, who had previously narrated stories online about caring for their loved ones diagnosed with GBM and; consented to the use of their stories as research data. These stories covered a period of between 1-3+ years, throughout the illness trajectory and post-bereavement. The researcher further conducted email interviews focussed on the retrospective perspectives of sharing stories online. Participants provided feedback on the preliminary findings of the DNA. The findings consisted of multiple layers of interpretations drawn from social constructionism, narrative and feminist relational theories, beginning with subjective stories, collective story typologies and core narratives, thereby illuminating the relationships between GBM caregivers, the stories they narrated and the event of narrating stories online. An additional layer of interpretation served to shed light on the relational, dialogical, performative and hindsight perspectives of storytelling and the storytelling landscape. This research decentres the dominance of biomedicine in caregiving research to present a perspective from GBM caregivers using their own stories, in their own voices, so as to inform counselling psychology research and practice. (shrink)

This thesis is about the crisis in representation that accompanies the attempt to account for lived experience, with particular reference to bodily pain in social science. The diagnosis of this problem of experience identifies epistemology as an inappropriate means of knowing that initiates a translational paradox unable to satisfy the simultaneous demands of making lived experience familiar in representational form yet retaining the foreignness of the original experience at the same time. This problem of simultaneity is not a problem, however, (...) if it is built into a way of knowing, something that escapes epistemological conditions of possibility with its either/or of singularities. To know in such ‘double vision’, or fractionally, characterises post-epistemological thinking. This thesis draws on a relatively underdeveloped method for practicing a fractional means of knowing from post- actor-network theory, that of the pinboard, and explores how it might be usefully applied to the problem of experience. The thesis constitutes an experiment in producing a social science account of the lived experience of chronic pain using this method as an alternative to conventional epistemological techniques that initiate the problem of experience. Through initial theoretical discussion, followed by reflection on its practical application involving the construction of fractional accounts of lived experience for five participants experiencing chronic pain, the pinboard is developed as a technique that seeks to maintain ‘double vision’ whilst inherently resisting attempts to resolve the juxtaposition it makes visible, enacting and engaging in an ontological politics with conventional methods of social analysis. This includes discussion of how the method might be transported from methodological knowledge spaces to effectively intervene on such conventional methods. (shrink)

Recent studies in psychosocial oncology that seek to address the social, psychological, emotional, spiritual, quality of life, and functional impacts of cancer, report positive findings for meaning-making interventions designed to help cancer patients cope with their illness experience. These interventions are successful in decreasing depression among cancer patients and increasing life satisfaction, self-esteem, coping, physical functioning, and optimism. Yet, despite these positive findings meaning-making interventions and, more generally psychosocial care, are not well integrated into hospital or healthcare organization routine cancer (...) patient care.This thesis explores practical, theoretical, and bioethical barriers to integrating psychosocial care, focusing primarily on the latter considerations. I will argue that meaning-making interventions fall within the bounds of healthcare professionals’ capacities and duty to care, more to the point, as necessary for quality cancer patient care. The bioethical principle of respect for autonomy, when reconsidered from a feminist standpoint, morally requires the intervention’s inclusion in routine care. (shrink)