By portraying the circumstances of people living with chronic conditions in radically different contexts, from Alzheimer’s patients in the UK to homeless people with psychiatric disorders in India, Managing Chronicity in Unequal States offers glimpses of what dealing with medically complex conditions in stratified societies means. While in some places the state regulates and intrudes on the most intimate aspects of chronic living, in others it is utterly and criminally absent. Either way, it is a present/absent actor that deeply conditions people’s opportunities and strategies of care.
This book explores how individuals, groups and communities navigate uncertain and unequal healthcare systems, in which inherent moral judgements on human worth have long-lasting effects on people’s wellbeing. This is key reading for anyone wishing to deconstruct the issues at stake when analysing how care and chronicity are entangled with multiple institutional, economic, and other circumstantial factors. How people access the available informal and formal resources as well as how they react to official diagnoses and decisions are important facets of the management of chronicity.
In the arena of care, people with chronic conditions find themselves negotiating restrictions and handling issues of power and (inter)dependency in relationships of inequality and proximity. This is particularly relevant in current times, when care has given in to the lure of the market, and the possibility of living a long and fulfilling life has been drastically reduced, transformed into a ‘reward’ for the few who have been deemed worthy of it.
Praise for Managing Chronicity in Unequal States
‘Managing Chronicity in Unequal States’ offers us an ethnographic lens to explore the complex and convoluted ways in which people deal with chronic illness and suffering in specific and unequal contexts. If biomedicine grounds the chronic-acute distinction in the ‘natural course’ of illness, this book invites us to a ‘counter-intuitive’ exercise: to think of chronicity and care as an inseparable dyad produced in the relational circumstances of life. It is within these circumstances that processes of fragilisation as well as creativity and transformative action emerge vividly.’
María Guadalupe García, Universidad de Buenos Aires – CONICET
‘Managing Chronicity in Unequal States presents a set of powerful ethnographic statements on the complexities and inequalities of care in contemporary experiences of chronic health conditions. It shows across diverse socio-political contexts how a range of state apparatuses – or indeed, their absences – shape and constrain attempts at ‘care’ in the manifold forms it can take: social support, prescribed and self-managed medications, persistence in the face of bureaucracy or conditions of precarity, diagnosis and recognition of dis/ability, and assisted dying. The collection performs a valuable service in evoking the many instances and processes through which the needs and rights of individuals and families are contested, wilfully ignored or unnoticed by those who might otherwise be able to meet them.’
David Orr, University of Sussex
‘The collection demonstrates how managing chronicity in unequal states becomes a shared experience for a constantly increasing number of people. Cultural, socio-economic and political aspects of care shed light on the fragility of healthcare systems based on biomedical standards and capitalist logic. Yet this volume is far from attempting to generalise people’s diverse experience in an easy answer about where chronicity comes from. On the contrary, the contributors emphasise that their optics are only providing a new perspective on previously studied phenomena. This is precisely why this book is an important contribution to contemporary medical anthropology, and why it will also be of use for sociologists of medicine and care’
Social Anthropology/Anthropologie sociale
‘Managing Chronicity complicates conventional understandings of chronicity by probing the politics of care, deservedness, and the stark inequalities that persistently mark our global society. It reveals the deficits of contemporary healthcare and welfare systems, underscoring the detrimental outcomes of the reductionist biomedical approach to chronic disease.’
Medical Anthropology Quarterly
Mục lục
List of contributors
Foreword Emily Yates-Doerr
Acknowledgements
Introduction
Laura Montesi and Melania Calestani
1 A house of cards: chronicity, care packages and a ‘good life’
Lisa Ballesteros
2 (Un)deservingness and disregard: chronicity, hospice and possibilities for care on the American periphery
Devin Flaherty
3 Publicly privatised: relative care support and the Neoliberal Reform in Finland
Erika Takahashi
4 The ‘hassle’ of ‘good’ care in dementia: negotiating relatedness in the navigation of bureaucratic systems of support
Lilian Kennedy
5 Assemblages of care around albinism: kin-based networks and (in)dependence in contemporary Tanzania
Giorgio Brocco
6 Alcoholism and evangelical healing in indigenous Mexico: care at the margins of the state
Chiara Bresciani
7 When ‘care’ leads to ‘chronicity’: exploring the changing contours of care of homeless people living on the streets in India
Sudarshan Kottai and Shubha Ranganathan
8 ‘My body is my laboratory’: care experiments among persons who use drugs in Downtown Montreal
Rossio Motta-Ochoa and Nelson Arruda
9 ‘These doctors don’t believe in PANS’: confronting uncertainty and a collapsing model of medical care
Maria La Russo and César Abadía-Barrero
10 Chronic living in Zombieland: care in between survival and death
Marcos De Andrade Neves
Afterword
Ciara Kierans
Index
Giới thiệu về tác giả
Melania Calestani is Senior Lecturer at Kingston University and St George’s, University of London (UK). Her work has focused on religious and medical pluralism in Bolivia, and on processes of decision-making and patient-centred care in the UK.
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