Contemporary Narratives of Ageing, Illness, Care (original) (raw)
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Multiplicity and encounters of cultures of care in advanced ageing
2020
The demographic of an ageing population in many countries is increasing the numbers of elderly who are resident in care homes especially in parts of South East Asia. The investments made into care-related activities in residential homes for the elderly largely reflect a medical approach in which priority is given to physical care through bodily maintenance and limited physical exercise, and only limited resources are allocated to other intellectual or imaginative engagements. The study introduces a very different culture of caring practice into a Singaporean nursing home through an arts-based programme in which the medical benefits are secondary to an assertion that the imagination, creativity and self-expression should be intrinsic to how we conceive of human thriving, emancipation and vitality. This difference of purpose draws our attention to the specific practice of the arts practitioner in how they care for and manage the activities, the space and the atmosphere of the arts ses...
“Improvisation and Vulnerability: Circuits of Care in Performances of Age and Ageing”
Contemporary Narratives of Ageing, Illness, Care. Edited by Katsura Sako and Sarah Falcus, 2022
This chapter is part of a collection of essays that explores cultural narratives of care in the contexts of ageing and illness. It includes both text-based and practice based contributions by leading and emerging scholars in humanistic studies of ageing. The authors consider care not only in film (feature and documentary) and literature (novel, short story, children's picturebook) but also in the fields of theatre performance, photography and music. The collection has a broad geographical scope, with case studies and primary texts from Europe and North America but also from Hong Kong, Japan, Australia, Argentina and Mexico. The volume asks what care, autonomy and dependence may mean and how these may be inflected by social and cultural specificities. Ultimately, it invites us to reflect on our relations to others as we face the global and local challenges of care in ageing societies. My chapter “Improvisation and Vulnerability: Circuits of Care in Performances of Age and Ageing” explores the notion of a circuit of care occurring in performance practices related to age and ageing, paying attention to how it operates regarding cognitive disability, particularly in Ruff (2012), performed by Peggy Shaw. This show was directed by and co-devised with Shaw’s long-time collaborator Lois Weaver; the pair is known as Split Britches. Here I explore how stroke survivor Shaw performs the complexity of ageing subjectivity and fragility and how her performance – and other activities inspired by her performative response to her stroke – sets up a circuit of care between audience, performer and dramaturg. I explore how Ruff explicitly acknowledges physical and cognitive fragility through the content and technical details of the performance and through Weaver’s interventions from the auditorium. I note how Shaw’s performance expertise, in spite of her cognitive difficulties, confounds expectations of post-stroke dependency and how her duty of care as a performer extends to informing and educating audiences about the symptoms and effects of stroke, thus completing the circuit of care in Ruff. The chapter also examines other examples of theatre practice with old people, including my father, which, taken together, illustrate how circuits of care can be established by participatory and improvisatory performance practices. Such performative situations challenge the normative, binary notion of the carer as giver and the cared for as receiver, equalising the status of both. In order to explore this, I use James Thompson’s “aesthetics of care” (430) and Eva Feder Kittay’s notion of “taking up” (ethicsofcare. org/eva-fedar-kittay/) in care relations and pay attention to the notion of vulnerability, a recent development in political and legal philosophy that challenges the focus on the situation of dependency in care ethics.
Culture and ageing: reflections on the arts and nursing
Journal of advanced nursing, 2005
Background. There has been a recent spectacular increase in papers devoted to the relatively new field of the medical humanities. We argue for a similar renaissance in thinking about the connections between the arts and nursing. Discussion. First, we consider the paintings of J.M.W. Turner as examples of loss, ageing and death. Second, we draw upon Leoš Janá ček's opera 'The Makropulos Case' (1926) as a focus for debate about human mortality. Third, we review some ethnographic research on the balletic body as an example of cultures of youthful ageing. Conclusion. A focus on the embodiment of vulnerability is a productive catalyst for research on the intimate connections between self and society, biology and culture, and reason and emotion. Such a research agenda would be the hallmark of a holistic approach to the arts and nursing.
Ageing and Society, 2006
This substantial edited text is one of very few to be concerned with the nursing care of people with dementia. With 36 authors, mainly from Australia and the UK, contributing to the 24 chapters, it will have required considerable editorial work, and for this Rosalie Hudson is to be thanked. Many of the authors are not nurses, and there are therapists, theologians and psychologists among them. The reader soon becomes aware that the book has no structure ; the chapters are not clustered by themes, no introductory account describes a rationale for their sequencing or adds value to the individual chapters, and no concluding chapter draws the issues together. The book therefore appears rather disjointed, and has no organising framework. So little is published about nursing practice in dementia care that this book is nonetheless welcome. The book, however, displays many assumptions about what makes ' good ' nursing care, and few are explained or defended. Many of the presented assumptions and priorities will appear rather dated, at least to Western European readers. While, for example, Chapter 2 is on the perspective of relatives, there is little on the perspective of people with dementia themselves ; and similarly, there are many chapters about the management of problems (Chapter 7 ' Wandering', Chapter 8 ' Sensory loss ', Chapter 10 ' Restraint ', Chapter 16 ' Aggression '), but only one on a therapeutic approach to intervention (Chapter 22 ' Creative care '); and whilst several authors reflect on person-centred care, many display a more pessimistic and diagnostically-driven approach (e.g. 'The horrific complexities of dementia ', Chapter 3). The intended readership is not clear. It will probably be found most useful by care workers, rather than professionally-qualified staff, but I am concerned that the assumptions it reinforces will perpetuate nihilistic and limited approaches to caring for people with dementia-the very thing the book states it seeks to avoid. As the Introduction states, the focus is on people with dementia who are resident in care homes rather than community settings. Some of the chapters articulate a humanitarian approach that is welcome and refreshing. Chapter 18 on 'Palliative care ' makes a useful contribution to an area of practice that has had very little attention to date. Chapter 20 on 'Listening to the person with dementia ' concerns storytelling-this is so important in dementia care yet nothing else in the book concerns biographical or life-story work. One chapter explores organisational issues around residential care. In itself, Chapter 23, ' The Eden alternative ', is interesting but no alternative models are explored or critiqued. In summary, despite some valuable individual chapters, this book feels dated and is disjointed. The Foreword heralds the contents as ' a tribute to
The dual production of bodies: aging, illness and care in the daily life of a family
Cadernos Pagu, 2022
December 2018 marked 5 years that Leonor had been taking care of her elderly, blind, deaf, toothless mother, who also had cancer in one of her kidneys and advanced Alzheimer's. Dona Carmen's aging was absorbed to the daily life, body and mind of her daughter and caregiver Leonor, who developed a genital prolapse, tendinitis and depression due to the work of care combined with domestic work. In this text I present how the relationship of care between mother and daughter, elderly woman, and caregiver, overlap in daily life and produce strength and vulnerability. By describing the life of these women, I show the process of co-production of bodies through the duality of aging and illness in connection with a heterogeneous set of illnesses that accumulate with the passage of years. I also analyze the co-production of bodies in relation to broader social processes and temporalities.
Medical Anthropology, 2019
Caring for a family member or friend with a serious health condition is a common feature of social life. Often, such care is framed as a burden, an unwelcome rupture in the fabric of everyday life. We draw on research conducted in Australia and the UK to examine care in the everyday lives of people living with and caring for neurodegenerative diseases and to trouble care as a burden. Participants in our studies mobilized practices of care to collaboratively produce a "good life". We argue that above all, care is a relational, enacted practice requiring examination in its local context.
Care as Virtue, Care as Critical Frame: A Discussion of Four Recent Ethnographies
Medical Anthropology, 2018
If, in the past decade, you have not dusted off your philosophy readers or revisited Carol Gilligan's In A Different Voice, then you might have missed medical anthropology's decade on "care." This surging area of study showcases the relationships, roles, and meanings of care, and is the ethnographic version of an ethics of care initiated by feminist scholars like Gilligan and others in the 1970s. For ethicists, the major concern is interdependence of persons and the vulnerability of the sick to the moral actions of others. Anthropologists take up these ethical questions with less universalist perspectives, emphasizing local practices and the "tinkering" that can only be described as relationship-specific (Mol et al. 2015; see also Huang 2015). For an introduction to this perspective, one might read any of a few published reviews (Alber and Drotbohm 2015; Martin, 2013) or several early works including an essay by Janelle Taylor (2008 and response by Lawrence Cohen) and the books of Annemarie Mol (2008; Mol et al. 2010) or Miriam Ticktin (2011). But if the roots of care in ethical theory are to be remembered, and I
Cultures of Care in Zurich 2016
The aim of the congress is to bring together current research in cultural studies on old age, focusing especially on dealing with dementia in everyday settings. In 29 papers, both practical aspects and cultural studies analyses of ways of dealing with dementia will be examined in relation to four issues: nursing care, more general forms of care, images of old age, and cultures of care. The challenges posed by dementia are currently the subject of broad debate, both in everyday contexts and in the media, in academia, in politics and within the relevant interest groups. This is due to the large and growing number of people affected either directly or indirectly by dementia as well as to the specific symptoms involved in dementia. In view of the limited medical options available for treating people with dementia, the question that arises is this: how can we establish a dementia care system that is sustainable and robust in social and cultural terms while also being firmly embedded in people's everyday lifeworld? Practical responses are being developed not only by dementia sufferers themselves but above all by the organizers of institutional care and by cultural and civil society actors. Beyond professional nursing care in the narrower sense, the notion of " care " per se has become established internationally in relation to dealing with people in need of assistance and nursing care in the broader socio-cultural sense. The notion of care is a key point of reference in more recent debates on helping people with dementia. In particular, various academic disciplines have begun to consider the positive potential of a community-based response to living with dementia. One example of this is the debate about the possibility of establishing a caring local community. The guiding principle behind the Congress, then, is a culture of humane aging in which people with dementia are included in society in a positive way – that is, a culture of care. The Congress draws attention to a number of aspects of care in relation to dementia: to practical experiences and experiments as well as to relevant concepts and theories of care. These will be looked at and discussed from the perspective of various disciplines relevant to cultural studies: cultural anthropology, literary and media studies, ethnology, as well as sociology, theology and gerontology, to name just a few.
THE ELDERLY: AN INCULTURATION TO THE CULTURE OF PERPETUAL MORBIDITY
The Philippines is known for its strong family ties. Filipinos set their ideals based on this culture. Ideally, one is expected to be in a family the moment he/she was born and the moment he/she will die as well. These are the expectations I saw when I walked in the Home for the Aged run by the Missionaries of Charity Sisters. Faces with hope looked at me but after a while of intent gazing, their faces were back again to their normal sullen manner. At that moment, I saw the spark of hope but also the perpetual morbidity they are experiencing shortly disrupted by our visit.