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Managing Chronicity in Unequal States

Ethnographic perspectives on caring

Edited by Laura Montesi and Melania Calestani

What is this?
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 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

Laura Montesi is a researcher and lecturer at the Centre for Research and Advanced Studies in Social Anthropology in Oaxaca, Mexico. 

Melania Calestani is Senior Lecturer at Kingston University and St George’s, University of London, UK.


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 LaRusso and César Abadía-Barrero
10. Chronic living in Zombieland: care in between survival and death
Marcos De Andrade Neves
Afterword
Ciara Kierans
Index

'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
 

Format: Open Access PDF

275 Pages

Copyright: © 2021

ISBN: 9781800080287

Publication: November 22, 2021

Series: Embodying Inequalities: Perspectives from Medical Anthropology

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