The Legitimacy of Healthcare and Public Health: Anthropological Perspectives 3031255917, 9783031255915

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PALGRAVE STUDIES IN URBAN ANTHROPOLOGY

The Legitimacy of Healthcare and Public Health Anthropological Perspectives

Edited by Italo Pardo · Giuliana B. Prato

Palgrave Studies in Urban Anthropology Series Editors

Italo Pardo School of Anthropology and Conservation University of Kent Canterbury, Kent, UK Giuliana B. Prato School of Anthropology and Conservation University of Kent Canterbury, Kent, UK

Half of humanity lives in towns and cities and that proportion is expected to increase in the coming decades. Society, both Western and non-­Western, is fast becoming urban and mega-urban as existing cities and a growing number of smaller towns are set on a path of demographic and spatial expansion. Given the disciplinary commitment to an empirically-based analysis, anthropology has a unique contribution to make to our understanding of our evolving urban world. It is in such a belief that we have established the Palgrave Studies in Urban Anthropology series. In the awareness of the unique contribution that ethnography offers for a better theoretical and practical grasp of our rapidly changing and increasingly complex cities, the series will seek high-quality contributions from anthropologists and other social scientists, such as geographers, political scientists, sociologists and others, engaged in empirical research in diverse ethnographic settings. Proposed topics should set the agenda concerning new debates and chart new theoretical directions, encouraging reflection on the significance of the anthropological paradigm in urban research and its centrality to mainstream academic debates and to society more broadly. The series aims to promote critical scholarship in international anthropology. Volumes published in the series should address theoretical and methodological issues, showing the relevance of ethnographic research in understanding the socio-cultural, demographic, economic and geo-­ political changes of contemporary society.

Italo Pardo  •  Giuliana B. Prato Editors

The Legitimacy of Healthcare and Public Health Anthropological Perspectives

Editors Italo Pardo School of Anthropology and Conservation University of Kent Canterbury, Kent, UK

Giuliana B. Prato School of Anthropology and Conservation University of Kent Canterbury, Kent, UK

ISSN 2946-2436     ISSN 2946-2444 (electronic) Palgrave Studies in Urban Anthropology ISBN 978-3-031-25591-5    ISBN 978-3-031-25592-2 (eBook) https://doi.org/10.1007/978-3-031-25592-2 © The Editor(s) (if applicable) and The Author(s), under exclusive licence to Springer Nature Switzerland AG 2023 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Cover Illustration: © SireAnko / Getty Images This Palgrave Macmillan imprint is published by the registered company Springer Nature Switzerland AG. The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

Contents

1 Introduction:  On Legitimacy, Healthcare and Public Safety  1 Italo Pardo and Giuliana B. Prato 2 Health  Inequalities and Ethics of Responsibility: A Comparative Ethnography 19 Giuliana B. Prato 3 Misgovernance  Kills: Italian Evidence 45 Italo Pardo 4 The  Fragility of Legitimacy: Access to Health Care in Manantali, Mali 73 Dolores Koenig and Tiéman Diarra 5 “I  Chose This ‘Other Way’”: An Ethnographic Approach to Medical Pluralism Within the Context of Greek Cancer Care 97 Falia Varelaki 6 Covid-19  Pandemic, Hydroxychloroquine, and Healthcare System in Turkey113 Ebru Kayaalp Jurich

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7 Negotiating  Power over Human Bodies: Populism, People and the Politics of Health in Delhi131 Subhadra Mitra Channa 8 The  Poverty of Opportunity: Where Are We Going; Where Have We Been151 Judy Arnold 9 The  Views of Selected Tennesseans on Universal Health Care as a Right171 Talbot Rogers 10 The  Biopolitics of Complementary Spiritual Healing in South Korea and Israel185 Liora Sarfati 11 Health  Sovereignty in West-Central Mexico: Legitimacy from the Grassroots207 Elizabeth A. Olson 12 Disabled  People and Access to the Labour Market: The Case of Greece223 Manos Spyridakis 13 Managing  Public Health in a Fragile Consociation: Lebanon Between Wars, Explosions and the Covid-19 Pandemic245 Marcello Mollica 14 Interrogating  the Public Health Approach: Lessons from the Field of Urban Violence263 Gary Armstrong and James Rosbrook-Thompson 15 Maintaining  the Health of the Public: Containing the Threat of Terrorist Resurgence in Contemporary Peru285 David Nugent Index307

Notes on Contributors

Gary  Armstrong holds a PhD in Social Anthropology from the University of London. Dr Armstrong is Senior Lecturer in Criminology at City, University of London. He previously lectured in the Sociology of Sport at Brunel University and before that in Criminology at the Universities of Westminster and Reading. Among his several books are Images of Control: The Rise of the Maximum Surveillance Society; Football Hooligans: Knowing the Score; and Blade Runners: Lives in Football. He has co-edited Entering the Field: New Perspectives in World Football and Football in Africa: Conflict, Conciliation and Community. Dr Armstrong has researched the possibilities that football plays in politics through fieldwork in post-conflict Liberia, Bosnia-Herzegovina and Malta. His latest book (with James Rosbrook-Thompson) is Mixed Occupancy Housing in London: A Living Tapestry (Palgrave Macmillan, 2018). Judy Arnold, PhD  retired Professor of Education at Lincoln Memorial University, is now on the adjunct faculty at Walters State Community College, where she has returned to her roots as a writing teacher. She holds an EDD degree from the University of Tennessee in Curriculum and Instruction. Professor Arnold received awards for exemplary teaching from both her university and her community. Her research interests include historical writing on teachers and women, the struggles of women in prison, and more recently the ethnography of social services such as unemployment. Professor Judy Arnold Rogers serves on the Board of Urbanities. She has widely published on these topics.

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Subhadra Mitra Channa, PhD  is Emeritus Professor at the University of Delhi, where she taught Anthropology until retirement in 2016. Her areas of interest are marginalization and identity, gender, religion and cosmology, ecology and landscapes. She was a Charles Wallace Fellow to UK (Queen’s University, 2000) and a visiting professor to MSH, Paris (2002), Fulbright visiting lecturer to USA (2003) and a visiting professor in 2008–2009 to USC, USA. She has written about fifty scholarly papers and is the author/ editor of eight books. She was the President of the Indian Anthropological Association and is the editor of the Indian Anthropologist, was Chair of the Commission on the Anthropology of Women (IUAES) and is now an elected Vice President of IUAES. She was awarded the S.C. Roy Memorial Gold Medal by the Asiatic Society for lifetime contribution to cultural anthropology. Her most recent publications include Gender in South Asia, The Inner and Outer Selves and the edited book Life as a Dalit. Tiéman  Diarra  is Director of Research and Co-director of Point Sud, Centre for Research on Local Knowledge, Bamako, Mali. For 15 years, he worked for the World Health Organization on programs to involve local populations in prevention and treatment of onchocerciasis, malaria, and Ebola. He has also served as a researcher at Mali’s Institut des Sciences Humaines and worked with many students in anthropology and public health. His major publications include Paludisme, cultures et communautés: Le cri du hibou and Santé, maladie et recours aux soins à Bamako (Mali): Les six esclaves du corps. Ebru  Kayaalp  Jurich  obtained her PhD in Cultural Anthropology from Rice University in 2009. She is Associate Professor of Anthropology at Yeditepe University, Turkey. Her research interests span cultural anthropology, ethnography, science and technology studies, disaster studies, risk and uncertainty, Anthropocene, neoliberalism, agriculture, governmentality, regulation, ethnography of media, media and communication, cultural studies, gender, race and class. Her most recent publications include ‘Covid-19 and healthcare infrastructure in Turkey’ (2020); ‘Earth in Practice: Uncertainty, Expertise, and the Expected Istanbul Earthquake’ (2021); ‘Do You Think This is Normal?’: Risk, Temporality, and the Management of Children’s Food Allergies through Online Support Groups (2021). Dolores Koenig, PhD  is Professor Emerita of Anthropology, American University, Washington, DC, USA. Her specialty is development project-­ caused forced displacement and resettlement. Her work on resettlement

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includes dam resettlement in West Africa, strategies to mitigate the impoverishment of resettlement, and the political context of resettlement. Her recent work includes an overview of the problems and opportunities of urban relocation in Challenging the Prevailing Paradigm of Displacement and Resettlement: Risks, Impoverishment, Legacies, Solutions (M.  Cernea and J. Maldonado, eds.), an overview of the major themes of anthropological publications in 2015 for the American Anthropologist and work on labor saving technologies used in the Manantali area for Economic Anthropology. Her most recent major piece is on retrofitting benefit-­ sharing programs in development-­caused displacement and resettlement, published in Impact Assessment and Project Appraisal. Marcello Mollica  is Associate Professor of Cultural Anthropology at the University of Messina, Italy. He holds a PhD in Social Science (Catholic University of Leuven, Belgium) and a European Doctorate Enhancement in Conflict Resolution (University of Deusto, Bilbao, Spain). He was a pre-doc Marie Curie at the University of Ulster, a post-doc Intra-­European Fellow at the University of Kent, a Marie Curie Visiting Staff member at the University of Tbilisi, a post-doc fellow and lecturer at the University of Fribourg and at the University of Pisa. He has conducted fieldwork in Northern Ireland, South-eastern Anatolia, the Holy Land, Caucasia and Sicily. He recently published (2021, with A. Hakobyan) Syrian Armenians and the Turkish Factor. David Nugent, PhD  is Professor of Anthropology at Emory University, USA.  His research focuses on emergent patterns of inequality associated with urban growth and rural displacement in rapidly globalizing contexts, and the political responses of affected populations. Professor Nugent has investigated political responses from radical political parties to alternative democracies, from shadow states to illicit crime syndicates. His primary geographic area of specialization is Latin America, with South Asia as a secondary concentration. Nugent has published his research widely. His most recent books are State Theory and Andean Politics: New Approaches to the Study of Rule (ed. 2015), The Encrypted State: Delusion and Displacement in the Northern Peruvian Andes (2019) and State Formation in the Liberal Era: Capitalisms and Claims of Citizenship in Mexico and Peru (2020). Elizabeth  A.  Olson obtained her PhD in Anthropology from Case Western Reserve University in 2009. She is Associate Professor of Anthropology at Southern Utah University. Professor Olson has con-

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ducted fieldwork in the USA, Mexico and Bolivia using a blend of qualitative and quantitative approaches to study traditional ecological knowledge of medicinal plants and relate it to the processes of community development and community-based conservation. She is engaged in research on the role of botanical knowledge in ethnomedical systems in Western Europe, the USA and Mexico. Her anthropological research has led her to focus on the intersections among health, environments and economic markets. She is the author of Indigenous Knowledge and Development: Livelihoods, Health Experiences and Medicinal Plant Knowledge in a Mexican Biosphere Reserve (2014) and several peer-­reviewed articles. Italo Pardo  received his PhD in Social Anthropology from the University of London in 1988. He is Hon. Professor of Social Anthropology at the University of Kent. In the 1980s, Italo Pardo pioneered research in the urban West in British anthropology (Managing Existence in Naples, 1996) and in the early 1990s initiated anthropological research on legitimacy, morality, corruption and the élite (Morals of Legitimacy, 2000; Between Morality and the Law, 2004; Legitimacy: Methodological and Theoretical Insights, with G.B. Prato, 2019). He has lectured worldwide, authored a large body of peer-reviewed articles and books based on his research in Italy, France and England and edits with Dr Giuliana B. Prato the Series ‘Palgrave Studies in Urban Anthropology’.  Pardo established and co-edits the journal Urbanities and co-founded and presides over the not-for-profit association International Urban Symposium-IUS. He leads a multidisciplinary project on legitimacy. His book Urban Inequalities (2021, with G. B. Prato) was recently published. His profile and select publications are available at https://italopardo.wordpress.com/. Giuliana  B.  Prato  received her PhD in Social Anthropology from the University of London in 1995. She is Hon. Professor of Social Anthropology at the University of Kent. She has done fieldwork in Italy, England, France and Albania. Her primary research interest is the ­relationship between ideologies and practice and their impact on individuals’ lives and society. She has held lecturing positions in London and Kent and visiting professorships across Europe. She is co-editor (with Italo Pardo) of the Series ‘Palgrave Studies in Urban Anthropology’. She chairs the Commission on Urban Anthropology (IUAES) and co-­founded both the journal Urbanities and the International Urban Symposium—IUS, of which she is Secretary-Treasurer. Her research has been published widely.

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Among her publications are Beyond Multiculturalism (2009); City Life and Beyond in Times of Pandemic (2020); and, with Italo Pardo, Citizenship and the Legitimacy of Governance (2010), The Palgrave Handbook of Urban Ethnography (2017), and several articles for the Palgrave platform ‘Social Science Matters’. Talbot  Rogers  obtained his PhD in Curriculum and Instruction from the University of Tennessee. Professor Rogers did his doctoral work in Nicaragua, interviewing teachers there on the effect the war had on them during the 1970s. He spent 26 years teaching elementary school and 13 years teaching at Lincoln Memorial University. Rogers’s essays include ‘Making Bail for U.S. Universities: Can Education Be Reclaimed from the Neo-liberals’ and ‘War, Terrorism and Denial: Lessons Learned from Civil War in Nicaragua’. His profile and select publications are available at: https://www.linkedin.com/in/talbot-rogers-54a54321 James Rosbrook-Thompson  holds a PhD in Sociology from the London School of Economics and Political Science (LSE) and is Senior Lecturer in Sociology at City, University of London. He is an urban sociologist whose research interests include ‘race’ and ethnicity, citizenship and belonging, youth delinquency, and sport. His most recent book (with Gary Armstrong) Mixed-Occupancy Housing in London: A Living Tapestry was published by Palgrave Macmillan in 2018. James is Assistant Editor of the journal Urbanities and a member of the International Urban Symposium-IUS. Liora Sarfati, PhD  is Lecturer in Sociocultural Anthropology and Chair of the Department of East Asian Studies of Tel Aviv University. She has conducted extensive anthropological field research in South Korea. Her specialisms span religion, society, culture and the media in Korea, Israel and Japan. Her main research from 2005 is about Korea’s vernacular religion. Since summer 2014, Dr Sarfati has also conducted research among ­protesters in downtown Seoul who demanded investigation of the Sewǒl Ferry’s sinking. Her research methods include urban ethnography, media analysis and folklore research. She has published several peer-­reviewed essays. Her book From Ritual to the World Wide Web: Mediated Representations of Korean Shamanism is now under consideration for publication. Manos Spyridakis  received his PhD in Social Anthropology from Sussex University. He is Professor of Social Anthropology in the Department of Sociology at the National and Kapodistrian University of Athens, Greece.

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He taught Anthropology of Work and Economic  Anthropology at the University of the Peloponnese. Professor Spyridakis has published a substantial body of peer-­reviewed work. His recent publications selectively include Market Versus Society. Anthropological Insights (ed. 2018) and Homo Precarius (Athens: Pedio; in Greek, 2018). Falia  Varelaki  is a doctoral researcher in Social Anthropology at the University of the Aegean, Greece. She holds an MSc in Social and Historical Anthropology from the same University. Varelaki specialises in health and the politics of health in urban settings. Her most recent publication is “‘Either you have money and plan your treatment, or you don’t have money and plan your death’: Tracing Inequalities in Breast Cancer Care” in Italo Pardo and Giuliana B.  Prato eds, Urban Inequalities: Ethnographically Informed Reflections (2021).

CHAPTER 1

Introduction: On Legitimacy, Healthcare and Public Safety Italo Pardo and Giuliana B. Prato

Salus populi suprema lex esto (The health of the people should be the supreme law) (Marcus Tullius Cicero, De Legibus)1

Individual and public health are fundamentals of associated life. Firmly grounded in empirical knowledge, this book contributes to illuminate key dynamics, ramifications and import at grassroots level of management of power in this vital field. The ambiguity in Cicero’s maxim that “the health of the people should be the supreme law” has long been debated. Echoing the Hippocratic Oath of “not doing any arm to anyone”, for over two thousand years this legal maxim has influenced governments, constitutional norms and legislative changes. Its “double nature” has justified both “conservative” ends, 1

 This maxim, appears several times in Cicero’s work On the Laws ([c. 52 BC] 2014).

I. Pardo (*) • G. B. Prato School of Anthropology and Conservation, University of Kent, Canterbury, Kent, UK e-mail: [email protected]; [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 I. Pardo, G. Prato (eds.), The Legitimacy of Healthcare and Public Health, Palgrave Studies in Urban Anthropology, https://doi.org/10.1007/978-3-031-25592-2_1

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including the consolidation of coercive power (potestas), and “transformative” aims, though sometimes the outcomes are beneficial only to selected groups of the population. Its subversive, emancipatory dimension appealed to the founding fathers of the United States in their struggle to free themselves from the power of the British Crown. As reported by Charles Francis Adams (Adams, 1851, p. 479), John Adams, the eighteenth-century political activist and second president of the United States, stated, “The public good, the salus populi is the professed end of all governments, the most despotic, as well as the most free”. Political thinkers and philosophers from different theoretical approaches and backgrounds, like Machiavelli, Rousseau, Hobbes and Locke, to name just a few, advocated the critical importance of salus populi. When associated to states of emergency, this principle has been instrumentally used to legitimize the imposition of “laws of necessity” for “the common good”. The intent is at once well-­ meaning—protecting the health and well-being of the population—and dangerous, for the suspension (albeit temporary) of existing laws potentially threatens the hard-won protection of citizens’ democratic rights. As has happened during the recent Covid-19 pandemic, this imposition may conflate national security with the “health of the people” and, by making necessity triumph over the law, generate challenges to the legitimacy of the emergency legislative decrees. We should be reminded that the Latin word Salus translates as Health but also as Safety, Security, Good, Welfare. It implies a strong relationship between health and social justice and refers to a broad notion of health that encompasses the health of individuals and that of their community and its environment. Indeed, for many ancient philosophers “healthy” implied harmony and a balanced order. After all, for Plato, the perfect social order was represented by the “healthy city”, where justice and happiness (eudaimonia) were interconnected. In the Republic (Plato, [c. 375 BC] 1993), justice is addressed in relation to the political community and to the health of the individual’s body and soul. For Aristotle ([350 BC] 1991), the aim of politics—and, implicitly, of the law—should be “eudaimonia”, which, besides the literal translation of “happiness”, conveys the meaning of “wellbeing”, in the sense of “living well” and “doing well”. The ultimate end of politics, he famously argued, should be the good of the people (ethnos) and of the city (polis). As the studies offered in this book contribute to show, this mission of Good Government is more often stated than fulfilled.

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* * * In a democracy, the complexity of responsibility, trust and authority in the exercise of power determines the relationship between citizenship and governance. Underscoring what, since the mid-1990s (Pardo, 1995, 2000b, 2004b), has grown into a sophisticated theoretical framework that has benefited from multidisciplinary contributions, this sine qua non runs across a long-term comparative project on the impact across society of the growing ambiguity in public life about what constitutes (morally and legally) illegitimate behaviour (Pardo & Prato, 2018, 2019b). An integral part of this project, the present book brings together on-the-ground investigations of the governance of public health and healthcare and the attendant dynamics of legitimacy. The chapters that follow originate in the six-day invitation-only Workshop that took place in Tuscany, Italy, in September 2021. Even though scrutiny on the management of public health and healthcare was of relevance and in motion well before the pandemic, as was the idea of holding a Workshop on this topic, the events triggered by Covid-19 both delayed the Workshop2 and served to underline the significance of the work that scholars in this field are engaging in. This development is fully recognized throughout this book. The Workshop benefited from the intellectual import, organizational know-how, network and financial contribution of the International Urban Symposium-IUS (https://www.internationalurbansymposium.com/) and from a generous grant from the Wenner-Gren Foundation for Anthropological Research (Gr.CONF-856). A robust exchange of ideas during the meeting and the consequent distillation of positive criticism, revision and rewriting have translated into well-integrated analyses that, driven by a commitment to ethnographically based reflection, help us to tackle the complex ways in which public authorities gain, keep or lose the public’s trust. Comforted by the strength of long-term field research in Europe, the USA, India, Africa, Latin America and the Far and the Middle East, this collective endeavour draws heavily on anthropological reflection on legitimacy and legitimation (of morality and action; of the law, politics and governance) to study how the management of the health services, 2  This Workshop was originally planned to take place in September 2020. It was postponed to September 2021, due to the Covid-19 pandemic and the ensuing lockdowns and travel restrictions.

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healthcare and public health is addressed by the authorities (political, medical, administrative), on the one hand, and is received at the grassroots, on the other hand. Attesting to our commitment to share our findings on this important topic with the widest possible readership, this book is preceded by syntheses of our studies published in an open-access Special Issue on Healthcare and Public Health: Questions of Legitimacy (Pardo & Prato, 2022). * * * There are, of course, many factors that affect individual and public health, from policy decisions to mismanagement of the public good, from lifestyle choices to environmental conditions or social and economic circumstances. With a keen eye on the impact of the current pandemic on health systems (Prato, 2020b), on urban life and its inequalities (Pardo & Prato, 2021) and on the ever-expanding gap between rulers and the ruled, our diverse discussions address in depth both the complexity of this topic and the false conundrum of balancing the interests of health with those of the economy. In theory, national and international bodies claim a commitment to protect human health. This commitment is enshrined in the Constitutions of many countries. Ensuring healthy lives and the promotion of well-being for all at all ages is one of the 17 Sustainable Development Goals of the UN. The EU (2014) wants “to ensure that human health is protected across all policy areas, and to work with EU countries to improve public health, prevent human illness and eliminate sources of danger to physical and mental health”. Its Health Programme feeds into the overall Europe 2020 strategy “to make the EU a smart, sustainable and inclusive economy promoting growth for all—one prerequisite for which is good health” (EU, 2020). In reality, as health threats increasingly have no boundaries, rulers are found wanting on key, in some cases basic, requirements of public health, from sanitation to air, soil and water pollution; from disposal of rubbish to the increase in environmental hazards and the attendant diseases. In a context where health is becoming “an orienting behaviour which requires management” (Illich, 1994, p. 6), this takes place alongside attempts to control citizens through semi-legal restrictions and enforced behaviour, whereby one stops having a right to healthcare (health safety) and becomes obliged to be healthy (biosecurity). In short, today’s national and

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international approaches on health seem to be reinterpreting the philosophical views on the interconnection between well-being and justice that we have outlined in the opening section through the lenses of biopolitics and the attendant prescriptions for healthy living; individuals are supposed to be responsible for their health and well-being and, thus, legitimize those prescriptions. This de facto implementation of authoritarian rule (Arendt, 1951; Agamben, 2005, 2020; Zylberman, 2013) combines with the politics of secrecy (Birrell, 2020; Keck, 2020) and fear (Daszak, 2020; Prato, 2020a), where, interestingly, political opposites seem to find common ground (Furedi, 2015; Pardo, 2020). As the strength of responsibility and trust in the exercise of power inevitably vanes, so does the authority of governance. It is beyond doubt that the pandemic has exacerbated existing inequalities and generated new injustice (Prato, 2020a), impacting heavily on the changing world of healthcare (Dew, 2014). It has underlined the point that we are at our most vulnerable when our health or our significant others’ health is at risk. The contributors take stock of the state of the art on health provision and inequalities (Castro, 2018; Prato, 2020a; Pardo & Prato, 2021; Blow, 2020), demonstrating the epistemological significance of charting new theoretical directions in the anthropology of “legitimacy and governance” (Pardo & Prato, 2010, 2018, 2019b; Sarduski, 2008) as a research topic that matters to our health and futures. We investigate different sources of legitimacy and the dynamics of legitimation (Pardo & Prato, 2019a, p.  2) with specific reference to the economic, social and political impact of (mis)management of personal and public health. As a group, we find common ground in the recognition that the right to healthcare and to live in a healthy environment may be a hallmark of the official world, including bureaucracy, government and the law, but its actual management often fails to meet this ideal. It may be a moot point, but one that needs nonetheless to be made, that, as a moral and ethical category, this right is open to controversial interpretation. Across society, actors often separate the legal from the legitimate. The current debate on legitimacy and legitimation undergirds the analytical imperative of investigating actions which are dodgy but do not always strictly break written rules because they are not adequately dealt with by the existing legislation or because they are made to be legal through expedient changes in the law. In the health field, this issue is magnified; in many cases, we shall see, dramatically so. Not always, it has emerged, what is legal is received as legitimate and not always what is not legal is seen as illegitimate (Pardo, 2000a;

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Pardo & Prato, 2019a). Throughout, we reflect on how empirical knowledge about healthcare and access to it and the management of public health bring out its complexity and socio-political significance. * * * As anthropologists distrustful of both excessive empiricism and unjustified abstraction (Leach, 1977, p. xvi ff.; Harris, 1986, chap. 1), we recognize the value of in-depth empirical knowledge for theoretical development. Centred on urban settings, our analyses address key questions—of course, with varying emphasis dictated by ethnographic evidence. How should we conceptualize the right to healthcare as an object of study? How should we understand the moral concepts of legitimacy by which decision-makers and health authorities motivate their choices and actions in this field? How “states of emergency” affect the way in which the authorities operate and the attendant justifications? What are the specific practices by which citizens’ right to healthcare is addressed and what differences, if any, there exist in the attendant applications at micro-, meso- and macro levels? To what extent policies of surveillance and control that are imposed in the name of the common good are received as legitimate at the grassroots? Intimately connected to each other, these questions, and their corollaries, are crosscut by a methodological and theoretical concern with how ethnographers should deal with the management of healthcare and public health and with the attendant ideas of legitimacy across the social spectrum. We recognize that the common perception of public health is that it concerns lifestyle issues such as obesity, tobacco, alcohol and drugs. Whilst these challenges are high profile and well publicized, we note, there are many lesser-known factors that significantly impact on population health and yet do not command the same notoriety. Let us explain briefly. The Hippocratic Oath identifies science and conscience as combined fundamentals of medical practice that must inform the relationships between the patient and the health practitioners and institutions. In adhering to the Hippocratic Oath, physicians swear to keep their patients “from harm” as well as “from injustice”. The multifaceted, not-always-ethical interactions between the patient and the people and institutions that are expected to provide healthcare for all illuminate far-reaching aspects of such a combination, as does the growing interference of bureaucratic hassle in the delicate balance that marks it. Against the dedication of most practitioners,

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the issues around individual health are heavily affected by the distortions in this combination engendered by some practitioners’ unscrupulous practices which may or may not break the law. At a higher level of power (Pardo, 2004a), the interests of multinational pharmaceutical often play a key role in the development of illegitimate (even illegal) practices in the health service (Miller et al., 1994). In many cases, the public health service is increasingly fudged by a tendency to “sub-contract” care to the private sector and import bureaucratic and managerial criteria from the latter which are sold to the public as necessary to help save money and fight abuses of power but effectively blur the crucial distinction between such injection and the more or less explicit privatization of state-run services. Urban life should be both sustainable and safe. This is one key condition to the legitimate management of personal and public health, the demands of which are constantly evolving as society develops and changes through time. In some cases, sanitation is a major public health issue, as are the obvious consequences of the industrial pollution of soil, water, food and air, and of the mismanagement of the collection and disposal of rubbish. Today, no one dare deny that there is a direct link between these problems, the spread of vermin and infectious diseases, the increase in oncological, cardiocirculatory, pulmonary, prenatal diseases and so on. Add to this the deaths and injuries caused by mismanaged road safety and street crime; for instance, the increasing cases of knife crime in urban areas have forced the British government to declare a health emergency. Modern day concerns include evaluating and mitigating the effects of poverty (lack of care, malnutrition, deaths caused by fuel poverty and so on) and of loneliness and social isolation on physical and mental health. In a scenario marked by an increasingly old population, these issues take a stronger tinge among the elderly, whose care cannot be simply measured in the cynical and deeply unfair terms of “burden on the taxpayer”. At the same time, social media bullying and the diffusion of technology among the younger generations are raising concerns. While in many cases monetary calculations seem to be a driving principle of government policy, it is argued that keeping people connected to other people and to options and resources is underestimated as a key driver for health promotion. As we have mentioned earlier, the problematic of public health and healthcare may well be claimed as a priority by international institutions such as the EU and the UN. What seems to be escaping the attention of the powers-that-be, though, is the importance of understanding the extent

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to which the listed actions are regarded as legitimate in the broader society. This analytical imperative cuts across the current debate on legitimacy and legitimation. * * * With specific reference to management of individual and public health, our analyses are informed by interconnected questions that have both specific and comparative value to the theory of legitimacy and governance. We investigate the legitimacy attached to health policies at the grassroots and ask why, though legal, some are resented as illegitimate. We study different forms of inequalities in accessing healthcare and the exercise of medical responsibility within and without set ethical rules, audit processes and performance indexes. We reflect on how incompetent, unscrupulous or corrupt practice (legal or illegal) is received at the grassroots. We examine the exercise of legislative and political responsibility in the management of public health in relation to environmental factors (sanitation, pollution, epidemics and so on) and to crime, violence and conflict. We query the drive to privatization and the attendant issues of legitimacy. The discussions address the complex relationship between morality, ethics and legitimacy, and several extend the analysis to the significance of this relationship to the study of the interactions between the legal, the not-strictly legal and the illegal in this critical domain of associated life. In Chap. 2, Giuliana B. Prato develops a comparative analysis on the right to healthcare and health practices in two European countries, Italy and the UK. Good health and universal well-being have become an international priority, which these two democratic systems pledge to fulfil. Over the year, in order to maintain the resilience and efficiency of their health systems, both countries have privatized important services and have decentralized the financial responsibility, leading to regional inequalities in healthcare provision. She notes that, while sharing a declared goal of guaranteeing their citizens’ welfare and well-being, they represent two significant variations of access to “proper” healthcare, which often depends on the way in which the health service personnel fulfil their duties, or on individuals’ willingness to “buy” private health services. Although the Italian Constitution stipulates the protection of health as a “fundamental right” of the individual and the community (Art. 32), the economic contribution people are forced to pay for the allegedly State-funded health service (the so-called ticket) and the decentralization of the national health

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service have produced significant regional variations that affect people’s well-being, life expectancy and finances. The British system does not rely on a written Constitution. And yet, of the two case-studies under consideration, it is this country that has traditionally implemented a welfare system in which the national health service (NHS) has been regarded as the country’s pride. Over the years, however, the British NHS has experienced a decline in the quality of the services due to privatization, a decreasing number of medical and paramedical personnel, cuts in public funds and so on. In both countries, the Covid-19 pandemic has exposed important structural weaknesses, and yet most medical personnel have shown an unwavering determination to provide good care despite adverse conditions and government policies. Prato argues that, despite official declarations, legislations, written Constitutions and so on, we should keep in mind that institutions (including health institutions) are not empty structures; they are staffed by human beings, and it is how these personnel perform their duties and fulfil their responsibilities that determines the outcome of the service provided. Prato’s ethnography addresses three interconnected aspects of legitimacy (Pardo & Prato, 2019a): input or process (looking at relevant legislations), performance (and the attendant auditing culture) and shared ethical values. The ethnography shows that legitimacy is not automatically granted to legislations or to actions that strictly abide to bureaucratic regulations. In contrast, the legitimacy of the system is questioned when the said legislations and actions, instead of facilitating common welfare, generate inequalities and increasingly jeopardize people’s well-being. Inspired by empirical knowledge, Italo Pardo in Chap. 3 bluntly states that misgovernance kills. Across Italy, misgovernance and moral and criminal corruption in public and professional life deeply undermine public safety and health. Pardo focuses on the ramifications of bad legislation that has allowed a sneaky privatization of large parts of the public health service, whereby tax-paying patients are turned into customers, and describes the personal and public health hazards generated by bad governance. Naples, he suggests, makes a graphically exemplary case of the impact on people’s life of these adverse trends. There, uncollected rubbish jeopardizes public health in lethal combination with overflowing sewage, falling trees, broken or uneven walkways, large and deep potholes, pieces of public buildings that fall on pedestrians and so on. These hazards now include a growing “rubbish trade”, whereby illegal immigrants peddle objects scavenged from dumpsters and displayed for sale on rugs thrown on the

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pavement. This dangerous setup is magnified by the practice of shallowburying toxic waste in official and makeshift dumping sites. In recent years, pulmonary disease, cancer and death have multiplied exponentially. Pardo’s study shows that when misgovernance breaches the democratic contract with citizenship where it hurts most the legitimacy of the “system” is jeopardized; the casualties are trust and, ultimately, authority. Italy, he notes, has manifestly become a test case for the social and political consequences of the eroded legitimacy of the system which, at one time too dire to contemplate, are now unescapably real. In different ways, Prato’s and Pardo’s arguments reverberate in those put forward by several contributors. Dolores Koenig and Tiéman Diarra address aspects of this conundrum in Chap. 4. Drawing on material collected in Manantali, a boom town in southwest Mali, they look at how the structural adjustment policies in the 1980s encouraged the privatization of medical services, breaking the government monopoly on healthcare that included inadequately funded local rural clinics, urban public hospitals, central hospitals in the capital and a medical school. While larger urban hospitals and regional central hospitals have remained public, local clinics in urban neighbourhoods and rural areas depend on private payments. In spite of improvements, local people do not believe that their health needs are assured. People struggle to pay for prescription drugs, claiming that physicians give them long lists of expensive medicines. Pharmacies do not always have sufficient stock, and smuggled medicines of unknown quality are sold by unauthorized vendors. The seriously ill must be sent to regional hospitals for many procedures. In this situation, Koenig and Diarra argue, healthcare institutions have fragile legitimacy in terms of performance and trust remains a casualty. Trust in this field, especially in relation to the drive to turn patients into consumers, runs across also the chapters by Falia Varelaki and Ebru Kayaalp Jurich. Varelaki examines the conflicting relationship that arises in the context of medical pluralism. Based on research conducted in a public oncology hospital in Athens (Greece), Chap. 5 explores the context of therapeutic choice, the process of which is resulting into the emergence of discourses around morality, legality and trust. In the context of the economic crisis in Greece, cancer patients are turned into medical consumers, who find themselves at the intersection of biomedicine and alternative medicine. Varelaki focuses on how cancer patients, oncologists and healers view and contextualize this choice to address the complex relationship and conflicting discourses that are embedded in a framework where legality

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and morality are connected, resulting into cultural shifts in the expectation of healthcare. This links to Kayaalp Jurich’s (Chap. 6) examination of dynamics of legitimacy in relation to the prescription of a non-evidence-­ based drug during the Covid-19 pandemic in Turkey. Given the government’s promotion of Hydroxychloroquine (HCQ), she asks, How is HCQ treatment received at the grassroots? What tensions exist, if any, between the government health policies and the public response regarding the HCQ treatment? How do patients and doctors react to the use of HCQ in the treatment of Covid-19? Serious safety issues have motivated many EU countries to ban the use of HCQ. Yet, she notes, Turkey health policies have turned the entire country into a clinical trial place. Her investigation of the responses of both citizens and health professionals to the government’s long-lasting support of the HCQ contributes to the discussion of the relations between ordinary people and their rulers and the legitimacy of governance. Citizens’ lack of trust in the state is notable in India. In Chap. 7, Subhadra Mitra Channa interrogates the relationship between the state’s legitimacy in the eyes of the people and its relation to responsibility and action in the face of a crisis, where this relationship is also problematized by the internal divisions and multiple identities in the state’s boundaries; hence the complex character that both legitimacy and responsibility can take. Focusing on Delhi during the pandemic crisis from March 2020 to Summer 2021, she addresses key areas of theoretical concern, specifically legitimacy, populism and democracy and the troubled relationship between them. Chapter 8 by Judy Arnold both links to Channa’s, Pardo’s and Kayaalp Jurich’s discussions and addresses an important ramification of the pandemic known as long covid. Arnold shows how the poverty of opportunity in the American Health Care System was exposed during the pandemic. She examines the experiences of Americans who sought healthcare during the Covid-19 pandemic and those who find themselves still sick from the effects of the virus. In light of the experiences of her informants, Arnold notes that the pandemic very nearly broke the American Health Care System and, coupling with similar points raised by Prato, she suggests that the greater questions for future post-pandemic study are: Is healthcare a right for the people, even the most economically disadvantaged? Is healthcare a governmental responsibility? What happens if/when another pandemic hits? Several implications of the questions raised by Arnold and by the analyses by Channa, Pardo, Prato and Varelaki resonate in Talbot Rogers’ contribution. In Chap. 9, he notes both that in most G7 countries

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healthcare is considered a right and some form of universal healthcare is provided to the population and that there is one exception: the United States, where there is no universal coverage. Rogers looks into the nature of healthcare in the United States and the attitudes of selected informants as to whether it is or should be a right. Most ethnographers would agree that it is not uncommon to observe people trusting, and using, “alternative” and “complementary” remedies; that is, alternative or complementary to official medicine. Two contributions, by Liora Sarfati and Elizabeth A. Olson, address this aspect in their studies of healthcare and its complications. Sarfati, in Chap. 10, notes that in many cultures people seek traditional and spiritual healers in many cases of chronic illness, mental issues or terminal conditions that modern medicine could not solve. She  analyses the relationship between healers and patients in these two contradictory discourses, asking, How different are the two related paradigms of illness and health? How do scientifically trained doctors reflect on the discourse of spiritual healing? Does institutionalized medicine allow spiritual healing to co-exist within its structure? How do patients negotiate between the two kinds of healing? Her exploration of these issues through material collected in the hypermodern cultures of Israel and South Korea—respectively, a strictly monotheistic culture and a multi-religious one—reveals that the tensions relate mostly to institutional concerns and health issues than to the religious-­supernatural aspects of the treatment. Sarfati’s point on institutional concerns evidences the significance of Varelaki’s and Prato’s discussions of the different approaches to cancer treatment, respectively, in Greece and the UK. While Varelaki’s Greek ethnography shows a conflict between biomedical therapies and “alternative” or “complementary” treatment, Prato shows how complementary therapies are incorporated into the UK’s established biomedical cancer treatment as part of a holist approach that address the body and the mind, as well as social aspects. In Chap. 11, Olson argues that the hegemonic biomedical system is challenged in west-central Mexico by individuals and communities through their food and health sovereignty movement. This movement is described and discussed in the broader national context and as it is played-out at the local grassroots level in talleres verdes (green workshops). It is examined with data collected through interviews, participant observation and material culture analysis of health sovereignty activities. The actors and groups involved are part of a larger movement and ongoing interest in Indigenous culture, knowledge and alternative models of health and community development. The health

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sovereignty movement uses green workshops to promote resilience at a grassroots level. Testifying to the complexity of the concepts of “healthy society” and “personal well-being”, Manos Spyridakis in Chap. 12 casts the issues of legitimacy and health in the context of the inequalities and unfairness embedded in the Greek job market. He points out that, although in 2017 the Greek State passed the law on the Rights of People with Disabilities, this group continues to experience discrimination and problems related to the reproduction of social inequalities. Spyridakis addresses an issue that has emerged in several chapters and that resonates with the questions raised at the beginning of this chapter and specifically asked by Armstrong and Rosbrook-Thompson: how do we define health? And what is at stake in defining it. People with disabilities, Spyridakis argues, are not just handicapped by physical barriers. They are also handicapped by social obstacles, such as the attitudes or beliefs held by other people, disabled or not, as well as by institutional policies limiting their rights and whose legitimacy is then questioned. The themes discussed thus far, and the underlying complications brought about by crisis and conflicting interests, take a dramatic turn in Marcello Mollica’s discussion of the management of public health in troubled Lebanon. Based on multi-sited participant observation and interviews conducted in the last fifteen years, Mollica, in Chap. 13, sheds lights on the repeated dichotomy that emerges when Lebanon encounters period of crisis between the National consociational level and practices and governance at the local level by reference to the political management of public health. Here, the multi-level public health government is contrasted with three dramatic events that touched Lebanon enhancing inter- and infra-confessional socio-political tension: first, the Hezbollah-Israeli War of 2006; second, the spread of the Covid-19 pandemic; third, the tragic explosion that ravaged Beirut harbour on 4 August 2020. The three events threatened both inter-religious and nation-local tolerance while also disrupting local equilibria. This was more manifest when official statements left ambiguities in their interpretations allowing political-religious parties and factions to act divergently not just among themselves but also with the national authorities. Complementary to Mollica’s analysis of war and public health, Gary Armstrong and James Rosbrook-Thompson, in Chap. 14, address a case of “continuous state of emergency” as they develop a scrupulous analysis of the UK government’s adoption of a public health approach to reducing

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levels of urban violence through the lens of legitimacy. Their contributions not only link splendidly to other chapters and to core issues in the debate developed in this book  on the implications of the “state of crisis” construct, but hit squarely on the head of a thorny problem in our society. In their chapter on the crisis of public health caused by urban violence in the UK, they draw on interviews with front-line professionals working in the “gang”/serious youth violence (SYV) sector to explore whether and to what extent the public health approach is received as legitimate “on the ground”. This approach, they argue, privileges a certain view of health, as well as a skewed framing of the gang/SYV issue. Indeed, for those tasked with working with the young people embroiled in urban violence, the epidemiological approach tends towards an inaccurate diagnosis of the problem. They examine the current climate surrounding public health discourse and look at the debate on the varying responses to the Covid-19 pandemic in the framework of a broader questioning of public health programmes. The discussion illuminates the on-the-ground import of their frustrations in pointing towards an asymmetry between views  of legitimacy “from above” and “from below” when it comes to the epidemiological framing of urban violence. Chapter 15 by David Nugent links to the analysis given by Armstrong and Rosbrook-Thompson, as he notes that a growing number of contemporary societies around the globe have been subjected to protracted periods of generalized violence, instability or epidemic disease that engulf the social order and traumatize the population. There is plenty of ethnographic evidence of the constant danger posed to a healthy society (and to its people’s physical health, even life) by extremisms and apparently dormant extremisms. Nugent remarks that a “highly virulent form of contagion, one that has never been completely eliminated but only driven underground, where it waits for the chance to re-infect the population” resonates mightily with the experience those of us who do research in comparable situations. The dangers posed by underlying sickness that undermines associated life are graphically highlighted by the recent re-­ emergence of extremism and the associated criminal actions in several Western countries. Italy is exemplary; there, death threats to political leaders have been recently issued by the “New Red Brigates” (Nuove Brigate Rosse), a Marxist-Leninist successor to the Red Brigades, the Left-wing Italian-based terror group of the 1970s and 1980s that gained a frightening notoriety for kidnappings, murder and sabotage and continues to enjoy the support of like-minded small but loud and violent groups

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(Pardo, 2021, pp.  41–42). In this line, one thinks, of what the current Russian aggression has tragically encouraged to come to light in various countries, where ex-closet extremists are engaging in risible but highly dangerous mental somersaults in condemnation of Ukrainian resistance, dubbed as an unnecessary and inhumane prolongation of the war. Concerned with how societies seek to heal and make themselves whole again in the aftermath of protracted episodes of violence and instability, Nugent offers an analysis of political conditions in contemporary Peru, a country that has strived to recover from a brutal civil war (1980–1995) with Sendero Luminoso (the Shining Path)—a violent Maoist revolutionary group that was defeated by government forces in the early 1990s. Although Sendero has been defunct for decades, fears of a terrorist resurgence actively haunt the present. The inability to leave the past behind has led to deep anxieties about the reality of recovery and equally profound fears about the dangers of relapse. Indeed, Sendero continues to be regarded as a highly virulent form of contagion, one that has never been completely eliminated but only driven underground, where it waits for the chance to re-infect the population. It is therefore of crucial importance to monitor social life for any telltale signs of a guerrilla resurgence. Only in this way, Nugent argues, can the health of the public be maintained. * * * Identity, money, politics, socializing and living conditions generally are all important aspects of people’s lives on which governance is tested at the grassroots. There are, however, fundamentally important areas of associated life where the legitimacy, and by extension the authority (Pardo & Prato, 2018), of a government stands or falls. Healthcare and public health fall squarely in this category. The contributors’ intimate knowledge of this domain in specific settings helps us to understand the impact of conflicting moralities across the social, cultural, professional, economic and political spectra. The analyses heavily qualify the good-sounding claim made by various systems, including democratic systems, that people’s health and well-being are a priority. Across the board, the Covid-19 pandemic has magnified the long-­festering problems caused by the progressive privatization of healthcare and the mismanagement of the urban environment extending to the pollution of soil, water and air. This book recognizes that these problems play a decisive role in the worldwide erosion of the public’s trust and of the legitimacy of professional and political authority.

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What matters most to the ordinary man and woman is their own well-­ being and the well-being of the people they love. From challengingly varied ethnographic angles, we find that the management of public health and healthcare is the ultimate litmus test for the legitimacy of the authority to rule. We find that in this field, especially, the very legitimacy of the institutions that are responsible for the decisions and actions that deeply influence people’s lives is at stake.

References Adams, C.  F. (1851). The Works of John Adams, Second President of the United States (Vol. III). Little, Brown & Co. Agamben, G. (2005). State of Exception. Chicago University Press. Agamben, G. (2020). A che punto siamo? Macerata: Quodlibet. Arendt, H. (1951). The Origins of Totalitarianism. Harcourt. Aristotle. (1991 [350 BC]). Nichomachean Ethics (W. D. Ross, Trans.). Oxford University Press. Birrell, I. (2020, April 11). How China Muzzled Its Bat Woman. The Daily on Sunday. Blow, C. (2020, May 3). Covid 19’s Race and Class Warfare. The New York Times. Castro, A. (2018). Health and Inequality. Wiley Online. https://doi. org/10.1002/9781118924396.wbiea2212 Cicero, M.  T. (2014 [c. 52 BC]). On the Laws (D.  Fott, Trans.). Cornell University Press. Daszak, P. (2020, February 27). We Knew Disease X was Coming. It’s Here Now. New York Times. Dew, K. (2014). The Cult and Science of Public Health: A Sociological Investigation. Berghahn. EU. (2014). On Effective, Accessible and Resilient Health Systems. https:// ec.europa.eu/health/sites/health/files/systems_performance_assessment/ docs/com2014_215_final_en.pdf EU. (2020). Europe 2020 Strategy. https://www.finance-­ni.gov.uk/articles/ europe-­2020-­strategy Furedi, F. (2015). Politics of Fear: Beyond Left and Right. Continuum. Harris, R. (1986). Power and Powerlessness in Industry. Tavistock. Illich, I. (1994, Winter). Brave New Biocracy: Health Care from Womb to Tomb. New Perspective Quarterly, 11(1), 4–12. Keck, F. (2020). New Epidemics. Anthropen. https://www.anthropen.org/voir/ Nouvelles%20%C3%A9pid%C3%A9mies Leach, E. R. (1977). Rethinking Anthropology. Athlone Press. Miller, A., D’Amato, A., D’Avino, A., & Fragliasso, N. (1994). Procedimento relativo ad illeciti penali commessi nella gestione dell’USL 41 tra il 1984 e il 1994. Tribunale di Napoli, ms.

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Pardo, I. (1995). Morals of Legitimacy in Naples: Streetwise About Legality, Semi-legality, and Crime. European Journal of Sociology, 36(1), 44–71. Pardo, I. (2000a). Introduction—Morals of Legitimacy: Between Agency and the System. In I.  Pardo (Ed.), Morals of Legitimacy: Between Agency and System. Berghahn. Pardo, I. (Ed.). (2000b). Morals of Legitimacy: Between Agency and System. Berghahn. Pardo, I. (2004a). Where it Hurts: An Italian Case of Graded and Stratified Corruption. In I.  Pardo (Ed.), Between Morality and the Law: Corruption, Anthropology and Comparative Society. Routledge. Pardo, I. (Ed.). (2004b). Between Morality and the Law: Corruption, Anthropology and Comparative Society. Routledge. Pardo, I. (2020). A Social Anthropologist in Lockdown. In G. B. Prato (Ed.), City Life and Beyond in Times of Pandemic. Special Issue of Urbanities-Journal of Urban Ethnography, 8(Suppl. 4), 19–24. Pardo, I. (2021). Making Second-class Italians: A Progressive Fabrication and Entrenchment of Inequality. In I.  Pardo & G.  B. Prato (Eds.), Urban Inequalities: Ethnographically-informed Reflections. Palgrave Macmillan. Pardo, I., & Prato, G.  B. (Eds.). (2010). Citizenship and the Legitimacy of Governance; Anthropology in the Mediterranean Region. Routledge. Pardo, I., & Prato, G. B. (Eds.). (2018). Urban Ethnographers Debate Legitimacy. Special Issue of Urbanities-Journal of Urban Ethnography, 8(Suppl. 1). Pardo, I., & Prato, G. B. (2019a). Ethnographies of Legitimacy: Methodological and Theoretical Insights. In I.  Pardo & G.  B. Prato (Eds.), Legitimacy: Ethnographic and Theoretical Insights. Palgrave Macmillan. Pardo, I., & Prato, G. B. (Eds.). (2019b). Legitimacy: Ethnographic and Theoretical Insights. Palgrave Macmillan. Pardo, I., & Prato, G.  B. (Eds.). (2021). Urban Inequalities: Ethnographically Informed Reflections. Palgrave Macmillan. Pardo, I., & Prato, G. B. (Eds.). (2022). Healthcare and Public Health: Questions of Legitimacy. Special Issue of Urbanities-Journal of Urban Ethnography, 12(Suppl. 6), 1–102. Plato. (1993 [c. 375 BC]). The Republic (R.  Waterfield, Trans.). Oxford University Press. Prato, G.  B. (2020a). Pandemic Emergency, Solidarity and Brutus Tactics. In G. B. Prato (Ed.), City Life and Beyond in Times of Pandemic. Special Issue of Urbanities-Journal of Urban Ethnography, 8(Suppl. 4), 3–13. Prato, G. B. (Ed.). (2020b). City Life and Beyond in Times of Pandemic. Special Issue of Urbanities-Journal of Urban Ethnography, 8(Suppl. 4). Sarduski, W. (2008). Equality and Legitimacy. Oxford: Oxford University Press. Zylberman, P. (2013). Tempêtes microbiennes. Paris: Gallimard.

CHAPTER 2

Health Inequalities and Ethics of Responsibility: A Comparative Ethnography Giuliana B. Prato

Health, intended as a state of “complete well-being”, is at the centre of international attention as one of the global “sustainability goals”. Accordingly, national healthcare performances are periodically assessed and ranked in international reports that evaluate the effectiveness, accessibility and resilience of a country’s healthcare system. These reports use data on: (i) the health status of the population (meaning, the life expectancy at birth); (ii) risk factors (such as smoking, drinking and obesity); (iii) health spending per capita. Tellingly, however, The Lancet (2018) points to important limitations of the way in which these performance and quality indexes are constructed, stressing that they do not “account for all potential factors related to health-care access and quality” (2018, p. 2259), including “catastrophic health spending”, insurance/private coverage,

G. B. Prato (*) School of Anthropology and Conservation, University of Kent, Canterbury, Kent, UK e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 I. Pardo, G. Prato (eds.), The Legitimacy of Healthcare and Public Health, Palgrave Studies in Urban Anthropology, https://doi.org/10.1007/978-3-031-25592-2_2

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“social determinants” of health, such as, among others, poverty and education, and territorial differences. The 2019 OECD report ranks Italy and the UK among the best healthcare systems worldwide (OECD, 2019a, 2019b). In reality, these two countries have experienced serious drawbacks, especially due to an accelerated move towards the “marketization” of healthcare. This chapter offers comparative reflections on access to healthcare services and the right to healthy living in these two European countries. A key aspect of these countries’ twentieth-century welfare policies has been the provision of “free” healthcare and the protection of public health as a “duty” towards their citizens. However, despite the pledge to guaranteeing citizens’ welfare and wellbeing, they present significant variations of “access” to healthcare and of the erratic service provided (often depending on staff’s discretionary actions). Drawing on ethnographic data and documentary sources, the discussion points to the complex relationship between legality and legitimacy, which may translate into conflicting moralities (Pardo, 2000) and ethics of responsibility. Ethnographic material has been collected through participant observation and shadowing (where possible) and interviews; fieldwork was carried out in Kent, Southeast England (2017–2022), and in the Italian regions of Apulia and Tuscany (1989–2019). The ethnography addresses three interconnected aspects of legitimacy (Pardo & Prato, 2019): input or process (looking at relevant legislations), performance (and the attendant auditing culture) and shared values that link institutional responsibilities and work ethics to communities’ expectations. Reminiscent of Mary Douglas’ How Institutions Think (1986), the ethnographic analysis shows that, of course, institutions—including health institutions—are not empty structures; they are occupied by human beings and it is precisely how they perform their duties and fulfil their responsibilities that determines the quality and efficiency of the service provided. Legitimacy, we shall see, is not automatically granted to legislations or actions that strictly abide to bureaucratic regulations. In contrast, the legitimacy of the system is questioned when said legislation and actions, instead of facilitating common welfare, generate inequalities and jeopardise people’s physical, emotional and psychological wellbeing.

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Italy: A National or Regional Health Service? The “right to health”—intended as access to free healthcare and public safety—is enshrined into the Italian Constitution and Regional Statutes. The 2019 OECD Country Reports on healthcare performance ranked Italy among the top ten countries (OECD, 2019a), evaluating its health system as effective and generally accessible, with a relatively low score for unmet needs for medical care. However, while the overall ranking provides a positive image of the Italian National Health System (Servizio Sanitario Nazionale; henceforth, SSN), the unpacked data reveal a different picture. The aggregated statistics on life expectancy do not reveal the full extent of important discrepancies in socioeconomic status and that low-income households and residents in some regions experience considerable barriers to accessing the system. The updated OECD 2021 Report acknowledges “important structural weaknesses” that were highlighted by the Covid-19 pandemic. In practice, the Italian SSN is fraught with serious limitations, due to frequent legislative changes on healthcare; cumbersome bureaucratic and administrative procedures which affect the actual performance and quality of the service provided, including long waiting lists; regional disparities and the financial burden placed on citizens through the imposition of out-of-pocket payments, the so-called ticket.1 In a previous publication (Prato, 2022, pp. 9–10), I have outlined key legislative changes that throughout the 1990s have increased the ticket quota and extended it to all health services. This led to a tripartite reclassification of drugs—which escalated the costs of several paediatric and life-­ saving drugs for chronic illnesses—and gave more power to the Regions,2 which became increasingly responsible for the collection of tickets and the administration of the newly established Local Healthcare Unities (Unità Sanitarie Locali, USL), later (in 1999) transformed into Local Healthcare Corporations (Aziende Sanitarie Locali, ASL). Regions also had the power 1  An earlier form of out-of-pocket payment had been introduced in 1982 on drugs prescriptions. The new ticket introduced in 1989 (d.lgs 23/03/1989) was presented as a partial cost-sharing “citizen’s duty”—and, like the French “ticket moderateur”, as a deterrent against doctors’ abuses of the services (e.g., too easily prescribed—and sometimes unnecessary—tests or drugs). On such abuses and various forms of corruption in the health service, see Pardo (2004). 2  The capital letter is used when the word Region refers to the regional administration.

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to increase the ticket at their discretion.3 Most of these changes have been justified as necessary measures to guarantee the resilience of public healthcare; in practice, they have transformed the healthcare services into “commodities” and the patients into “consumers” (Pardo, 2023). In 2001, the Reform of Chapter V of the Italian Constitution (Constitutional Law n.3, 18-10-2021) delivered the final blow. This Constitutional reform entrusted the “protection of citizens’ health” to the Regions and the autonomous Provinces. These institutions have since been responsible for the organisation and administration of healthcare services, leading, critics say, to more than 21 different healthcare systems. That year, a Prime Minister Decree (DPCM 29-11-2001) added further confusion and complications, as it instituted a bureaucratic division of the so-called Essential Levels of Assistance (Livelli Essenziali di Assistenza; henceforth, LEA) into three main areas: (i) public health and collective health assistance (e.g., protection from environmental pollution, prophylaxis of infectious diseases, vaccinations and early diagnosis programmes); (ii) territorial services (family doctor, pharmacy/chemist and specialist services, outpatient diagnostics, home services for the elderly and the seriously ill, residences for the elderly and therapeutic communities); (iii) hospital services (including rehabilitation centres). Subsequent legislative updates, again justified in terms of efficiency and resilience, added further complication without easing people’s access to healthcare; exemplary are a new agreement between Sate and Regions in 2006 for the transformation of Regional health districts in “Complex Unities of Primary Care” (UCCP), the Monti government’s health reform (Law-8-­ novemebr-2012-n.189), the DM 2-aprile-2015-n.70, leading to the closure of local hospitals—including those that had been established with philanthropic bequest, which I will discuss later—and the 2017 DPCM that increased the financial burden on the Regions. Today, the SSN is de facto territorially based, often allowing for grey areas in the distribution of responsibilities between the Central State and the Regions. A new revision of the LEAs began in January 2021 (AGENAS, 3  The same test or drug may have a different cost in different regions. In 2000, the National Health Fund was abolished (d.lgs 18-02-2000, n. 56), transferring almost all responsibility for health spending to the Regions. It must also be noted that, in Italy, public health spending is lower than the EU average and that one-quarter of health spending relies on citizens’ contribution through the ticket. Between 2009 and 2017, the ticket increased by an average of 2.5%, raising citizens’ contribution to health spending to 23.5% (the European average is 16%).

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2021) as a consequence of buck-passing responsibility between national government and regional administrations during the Covid-19 pandemic. The aptly named “National Recovery and Resilience Plan” (PNRR) will strengthen the role of the territorial health districts (one for every 100,000 inhabitants), focusing on the development of “Case della Comunità” (Community Houses, one for every 40–50,000 inhabitants) in order to provide immediate and continuous social and health assistance. Ordinary people have given up trying to understand what they are actually entitled to. When they can afford it, they opt for private care (Pardo, 2023). Most important, ordinary Italians see the “legal imposition” of the ticket and some legislative changes as a betrayal of the three fundamental principles of universality, equality and equity that had inspired the establishment of the SSN in 1978, raising fundamental issues of legitimacy and trust (Pardo & Prato, 2019).4 Furthermore, as I have mentioned earlier, the regionalisation of the system has increased disparities in healthcare provision, life expectancy and personal wellbeing. In particular, those who live in the southern regions often have to bear the extra cost of having to seek medical care in the northern regions; specifically, travel costs, and lodging and living expenses for accompanying family members. Regional Disparities and “Health Migration”: A Vicious Circle I came across the issue of regional disparity in healthcare in 1989–1991, during my research in Brindisi (in Apulia) on the political dynamics surrounding the construction of a new power station. At the time, I was primarily interested in studying “new forms of political action” against the so-called partitocrazia (party-rule) and the attendant sottogoverno (hidden-­ government) decision-making processes (Prato, 1993, 2000, 2018, 2021). A key theme, among others, that emerged during the fieldwork was the negative environmental impact of industrialisation programmes both on the local economy—Brindisi province was renowned for wine, oil and artichoke production—and on people’s health (Prato, 1993, 2021). Brindisi and the neighbouring areas in the Salento peninsula (the southernmost area in Apulia) have a high record of cancer (mainly pulmonary), cardio-­ vascular and other respiratory pathologies and congenital malformations. A study carried out in 2017 shows a direct link between these pathologies and environmental pollution, particularly PM10 (Atmospheric Particulate 4

 On the health system before 1978, see Prato (2022, p. 11).

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Matter, 10μ) and SO2 (sulphur dioxide) from the two Brindisi power stations and VOC (Volatile Organic Compounds) from the petrochemical pole (Bauleo et al., 2017). Moreover, the area is afflicted by a shortage of healthcare facilities, forcing local people to seek health treatment in other regions, especially Lombardy, Tuscany and Emilia-Romagna. This phenomenon has been labelled as “health migration” (Ministero della Salute, 2019), not to be confused with “health tourism” (e.g., for therapies in spa resorts, which are widespread across Italy). Laura’s experience exemplifies this situation.5 Laura worked at the café where I often socialised with my informants. At one point, I realised that I had not seen her for over two weeks. When I enquired about her absence, she said that she had accompanied her husband to Milan for a third cancer operation. The local consultant who had detected the cancer had suggested a hospital in Milan that specialised in that specific surgery. “Luckily”, Laura said, she did not have to pay for accommodation because a neighbour’s relative who lived in Milan had offered “a bed in her small apartment for as long and as often she needed”. To avoid the physical stress of a long journey by train (about 12  hours), the couple decided to fly to Milan, thus adding extra costs to what Laura called their “venture”. The post-surgery therapies, too, required further private expenditure because Brindisi’s hospital was not equipped for the therapy her husband needed and they had to travel to other Apulian hospitals.6 Laura did not drive; so, given the limited and irregular public transport, they had to rely on the goodwill of friends and relatives who drove them to various hospitals— “we only needed to pay for petrol”, Laura said. In recent years, the local shortage of healthcare facilities has worsened following the legislative revision of the aforementioned hospital organisation in 2015, which introduced three types of hospitals, specifically: 1. Basic hospitals with a catchment area of between 80,000 and 150,000 inhabitants; 2. Level I hospitals with a catchment area of between 150,000 and 300,000 inhabitants; 3. Level II hospitals with a catchment area of between 3,000,000 and 1,200,000 inhabitants.  All names of key informants are fictitious to ensure their anonymity.  In 2001, a radiotherapy department was eventually opened, following years-long battles carried out by local oncologists who were also involved in environmental campaigns. Until 2001, only two hospitals in north-Apulia had this facility. 5 6

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As a consequence, in the province of Brindisi, the number of hospitals was cut from 6 to 3—one for each of the aforementioned types. Residents across the province strongly protested against this downsizing; questioning the legitimacy of this legislation, they argued that, apart from the obvious transport difficulties, the territorial centralisation of the health services might lead to the total collapse of the remaining structures, which already performed poorly. The closure of the hospital “Ninetto Melli” in the nearby town of San Pietro is particularly significant in terms of the problematic relationship between legality, morality and legitimacy (Pardo, 2000; Pardo & Prato, 2019). This hospital was established in 1947, following a bequest by Federico Melli, a local agronomist and landowner, who died in 1940. In his will, Federico left all his wealth and properties to the town of San Pietro, including his successful agricultural Firm and the library collection of his deceased brother (a university professor of moral philosophy), with the provision that the collection would become the starting nucleus of a town public library and the agricultural and properties revenues would be used for the construction of a local hospital to be named after his son, Ninetto, who had died in 1926 aged 18. In 1941, the town council officially accepted the donation. In line with Federico’s will, in 1946, the town administration established the Fondazione Ninetto Melli, a “charitable Foundation of social utility” (ente morale), which administered the funds until 1997. During this 50-year period, the Foundation built the hospital and, then, gradually expanded and modernised it, thanks to a successful administration of both the funds and the agricultural Firm. The hospital became a training centre for nurses and hosted a key A&E department, serving several nearby towns. Local people were proud of “their hospital”, which was regarded as one of the most efficient in the Brindisi province. Furthermore, the successful management of the Foundation made them feel that the donation had contributed to the general welfare of the town and its inhabitants.7 In 1997, a new Law on non-profit organisations and associations (d.lgs. 4-12-1997, n.460) empowered the Regions to dissolve charitable Foundations of “social utility” and transfer all the assets to public administrative bodies. The Apulia Region decreed 7  Not only the hospital became a major local employer, but, in the 1940s, the Foundation completed the reclamation of the marshland. The reclaimed land was distributed to local peasants and veterans of WWII under a sharecropping system that allocated 60% of the production to the peasants and 40% to the Firm.

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the dissolution of the “Ninetto Melli Foundation” and the transfer of its assets, including the agricultural Firm, to the Local Healthcare Unit (ASL BR1). Local residents and people from nearby towns have protested against this move, arguing that it betrayed the will of the donor and have demanded transparency and the disclosure of the legal acts. This legal controversy has never been fully solved (BrindisiReport, 2016; Chiazzarande, 2017). According to my local informants, the transfer and the subsequent mismanagement of the assets led to financial losses and the decline of the services provided by the hospital. During an updating fieldtrip in 2013, I met Anna, a retired nurse who had worked at the hospital for more than 40 years and was involved in a protest group. I interviewed her at length and she invited me to attend the group’s meetings. People’s discontent addressed, among other issues, the reduction of health services, which had created enormous disadvantages especially to the elderly, who were unable to travel to other regional facilities. This argument was later used against the closure of the hospital, following the 2015 Ministerial Decree. It was pointed out that the Decree recognised the need to have basic hospitals in “particularly disadvantaged areas” that were too distant from, or could not easily reach, healthcare hubs. This provision, however, applied only to the autonomous provinces of Trento and Bolzano, not to other areas in the country where public transport was almost non-existent, as in the case of the Salento in Apulia. Two other important issues emerged during the aforementioned meetings. One relates to the Regions’ health budget. It was pointed out to me that the aforementioned “health migration” had created a vicious circle, further enriching the northern regions and increasingly impoverishing the southern ones. Let me explain. Besides the ticket to be paid by the patients, the Region that provides the hospital healthcare to non-residents is reimbursed by the Region where the patient resides. This reimbursement is described as a double system of “active mobility”—a credit for the receiving Regions—and “passive mobility”—a debit for the giving Regions.8 The other key issue was the relationship between hospital personnel and patients. Interestingly, the downsizing of the hospital, with the attendant decline of services, did not affect people’s assessment of the “quality” of the healthcare. All participants in the meetings praised the medical and healthcare personnel for their competence and caring. This discrepancy 8  In 2018, the top receiving Region was Lombardy, followed by Emilia-Romagna, Tuscany and Veneto. In contrast, Apulia was among the Regions with a significant passive mobility.

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between shortage of healthcare facilities and the dedication of the medical and health personnel raises interesting issues on process and performance legitimacy, on the one hand, and the community’s “shared beliefs” legitimacy, on the other.9 It turns on its head the official argument that informed the legislation, for it brings out the crucial issue that the allegedly “rational” bureaucratic measures and on-paper success are not necessarily matched by good quality healthcare. An ethnographic case-study from Tuscany is illustrative of this discrepancy. Variations of Professional Responsibility Tuscany is widely regarded as having one of the best healthcare services in Italy; yet, peoples’ expectations are often disattended. Maria’s experience is a good example of contrasting approaches in the medical profession, leading to unmet needs at different levels of assistance (the aforementioned LEAs), on the one hand, and caring beyond professional duties, on the other. I met Maria during a fieldwork on environmental pollution in Tuscany that I was carrying out in 2018–2019. Maria resides in another region, but at the time was regularly visiting her parents to help with her father’s health problems. She compared her new experience of the Tuscan healthcare with her “frustrating”, she said, experience two years earlier, when her father, Stefano, reported unusual (for him) health problems. Stefano was 90-year-old and had been very active until then. Suddenly, his legs began to swell and made walking very difficult. He, then, experienced fatigue and breathing difficulties. His family doctor, Dr A, said that the breathing problems were simply due to anxiety and depression because he could no longer be as active as he used to be; so, she prescribed anti-­ depressants and ignored Stefano’s request for clinical tests. Three weeks later, Stefano fell and was badly injured; he was concussed, needed stiches and remained in a confused state throughout his stay in hospital. Maria wanted to sue Dr A and consulted her doctor to see if there had been a case of malpractice. Her doctor told her that Dr A was either a criminal or completely incompetent, because the combination of Stefano’s symptoms and his age would indicate liquid in his lungs and heart failure, which was exactly what the hospital had found once the tests that Stefano originally wanted were eventually performed there. However, Maria’s siblings 9

 Koenig and Diarra (2023) address similar issues in their Mali ethnography.

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decided not to sue. The hospital experience was upsetting, too, Maria says. The serious understaffing problem did not justify, in her view, the dismissive and rude attitude of some nurses. In his confused state, Stefano required constant supervision, including during the night, but the nurses said that they could not dedicate their time to him and suggested that one member of the family should spend the night in hospital to assist Stefano. Maria was appalled. Not only this was against regulations, because outsiders are allowed in hospital only during visiting hours, but the nurses also suggested that, should no family member be available to do the “night shift”, they could indicate some trusted persons who could do it for them for a small fee. “Is this legal?”, Maria asked, “and, if so, is it morally right?” On returning home, Stefano needed nursing care twice a day for the following two months, but the healthcare system only provided “free” assistance for ten days; this required a long bureaucratic procedure and “only”, Maria ironically noted, the payment of the ticket. The “extra” assistance had to be paid in full by the family. In 2018, Stefano’s condition worsened. Meanwhile, Dr A had retired and Maria’s parents had registered with Dr B, who had often been Dr A’s substitute when she was on leave. Maria told me that the service provided by Dr B made her feel like she “was living on another planet”. She explained, Dr B is young, but willing to do the right thing. If he is faced with a particularly problematic pathology, he will consult with a specialist in the field and then report back to the patient. When dad needed again home assistance, Dr B made enquires on our behalf and booked the services for us. The nurses, too, who assisted dad at home twice a day, were exceptional; they even gave us a phone number in case dad needed assistance ‘outside hours’. When it became clear that dad’s condition would not improve, one of the nurses alerted Dr B who wasn’t aware that palliative care was now available also for cases like dad’s. Dr B acted immediately. He visited dad every day. He was a true comfort for mum to the very end.

I asked Maria whether there were local charities that they could have approached two years earlier. She confirmed that only a few religious charities still existed, but there was none locally. “This is not England, you know”, she remarked.

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The UK: A National Health System Across National Regions The British National Health System (NHS) was established in 1948 as part of major social reforms after WWII.  It is an umbrella term for the public healthcare systems of the four UK “nations”—England, Wales, Scotland and Northern Ireland. All four systems are funded out of general taxation and share the general principle that healthcare should be comprehensive, free and universal. Since 1999, healthcare has become a devolved responsibility, meaning that each nation’s NHS operates independently and is regulated by and accountable to the relevant government. Thus, the way in which services are organised and paid for have diverged; each nation has its own planning and monitoring frameworks and its own public health agencies, resulting in differences across some policy areas, as highlighted by the differing policies to tackle Covid-19.10 However, international reports tend to make a joint evaluation of the healthcare profile of the UK, pointing out that the four systems face similar challenges and often adopt similar solutions (OECD, 2019b), especially in trying to reduce waiting times and the shortage of doctors, nurses and care workers. Generally, health spending across the UK is higher than the EU average and, before Covid-19, was said to deliver good health services. Having done field-research in Kent, Southeast England, in this chapter I shall focus on the English NHS. Like the Italian counterpart, the organisation of NHS-England (from now on, simply NHS) has changed overtime to address shortcomings and meet new needs. For example, prescription charges were abolished in 1965, but reintroduced three years later.11 Throughout the 1970s and early-1980s, revisions of the original tripartite system (hospital services, primary care and community care) and of Local Health Authorities led to the establishment of Regional Health Authorities. Major reforms have occurred during the Thatcher and Blair governments, respectively, 1979–1990 and 1997–2007. The key points of Margaret Thatcher’s reforms were the introduction in the 1980s of a “modern” management process in the NHS and the so-­ called internal market to shape the structure and organisation of health 10  While Scotland, Wales and North-Ireland are responsible for their respective Healthcare Service, NHS-England is regulated by the British government. With 80% of the UK population living in England, NHS-England is the largest. 11  Prescription charges are generally paid by people aged 16–60; depending on circumstances, some are eligible for free prescriptions.

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services, with the aim, among others, to shorten waiting times. Opposition by the British Medical Association and subsequent revisions resulted in the 1990 “National Health Service and Community Care Act”, whereby Health Authorities would stop running hospitals and instead would “buy” care from their own or other authorities’ hospitals. The “providers” of the services were organised as “NHS Trusts” (Prato, 2022). Critics have argued that, while aimed at encouraging efficiency, the ensuing competition increased local differences. On becoming Prime Minister in 1997, Tony Blair promised to replace the “internal market” with “integrated care”, arguing that this model would combine “efficiency and quality” (Prato, 2022). However, in his second term, Blair strengthened the “internal market” as part of a modernising process that would increase standards, expand patients’ choice and contain government expenditure. Whilst keeping health services free “at point of use”, Blair’s government encouraged outsourcing of medical services and support to the private sector; for example, both hospital’s non-medical services (such as catering) and medical services12 could be provided by private contractors. Furthermore, similar to the Italian case discussed by Pardo (2023), hospital doctors have been allowed to work both in the NHS and privately, increasing the waiting time for NHS-­ provided surgery. Primary care services were also affected; in particular, GPs13 were given responsibility of their practice budget, allowing them to increase (in some cases double) their pay while reducing their working hours and, like hospital doctors, work part-time in the NHS and earn extra income in the private sector.14 Devolution (see footnote 10 above) increased the differences between healthcare services across the UK. Critics have argued that the badly managed and unsuccessful restructuring left the NHS with serious staffing problems, resulting in the loss of thousands of doctors and nurses (Monbiot, 2002).15

12  For example, treatments were provided by so-called surgicentres, or Independent Sector Treatment Centre (ISTC). Between 2005 and 2008, ISTC treatment of NHS patients doubled from 5% to 10%. 13  GP stands for General Practitioner; that is, the family (general) doctor. 14  Since 2004 GPs have stopped working on weekends and doing night calls. 15  According to a comparative study of health services performance across the UK, while England had fewer doctors, nurses and managers per capita, NHS-England was making better use of the resources than the other three national NHS systems, delivering relatively higher levels of activity and lower waiting times (Bevan et al., 2010).

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The involvement of the private sector in the NHS increased with the “Health and Social Care Act 2012”, provoking mass demonstration led by health workers. That year, the Department of Health published The NHS Constitution for England, which states: The NHS belongs to the People. It is there to improve our health and wellbeing […] It touches our lives at times of basic human need, when care and compassion are what matter most. The NHS is founded on a common set of principles and values that bind together the communities and people it serves—patients and public—and the staff who work for it. (DHSC, 2012)

In brief, the Constitution sets out the rights for patients, the public and staff and outlines the NHS commitments to patients and staff and the reciprocal responsibilities between public, patients and staff “to ensure that the NHS operates fairly and effectively”. It also states that all private and third sector providers supplying NHS services are required by law to abide by the Constitution, and sets out the government’s commitment to produce up-to-date reports on NHS accountability on decision-making. These initiatives, however, were followed by a period of low investment in the NHS, the introduction of new contracts for junior doctors (leading to a series of walk-outs in 2016) and an Ofsted-style16 system of rating hospitals and GP surgeries in England that created new problems at a time when demands on health service were growing. On the NHS’s 70th anniversary, in 2018, the British Government announced a “NHS Long Term Plan” to tackle major areas of concern, including “funding, staffing, increasing inequalities and pressures from a growing and aging population”. In this long-term plan, published in 2019, the government pledged that NHS-England would receive a 3.4% increase in funding every year until 2024. The public health crisis triggered by the Covid-19 emergency pushed the government towards what have been described as “the biggest reforms to the NHS in nearly a decade” (https://nhsproviders.org/a-­guide-­to-­the-­health-­and-­care-­act-­ 2022/overview), leading to the formulation in 2021 of initial proposals to cut bureaucracy and improve care and a new Health and Care Act in 2022. 16  Ofsted—Office for Standards in Education, Children’s Services and Skills—is a nonministerial governmental department, reporting to Parliament, and is responsible for inspecting educational and childcare institutions in England.

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The 2022 Act focuses on the expansion of “integrated care strategies” to improve health outcome and tackle health inequalities. Interestingly, although reforms have often led to conflict between government and healthcare personnel, especially on the issue of outsourcing to the private sector, before the Covid-19 pandemic ordinary people living in Southeast England were generally proud of “their NHS”, saying that, overall, the system met their needs (OECD, 2019b). To understand such a relatively positive attitude, we should consider aspects that have helped to ensure efficiency and resilience, but have been mostly ignored in the official “quality reports”, specifically the role of charities and voluntary work and patients’ involvement in the assessment of local GPs’ work. NHS Trust, Charities and Patient Groups: A Symbiotic Relationship The NHS Foundation Trusts (henceforth, Trust) were created to devolve decision-making from central government to local organisations and communities, and thus provide a more responsive service to local people. Accordingly, residents can apply to become members of the Trust and be elected to the Council of Governors—which holds the Trust’s Board of Directors into account—give their views on the Trust’s activities, influence future developments and offer practical help to develop health services. The involvement of patients in assessing and influencing the services provided by the NHS also applies to GP practices. Since 2015, it has been a contractual requirement of NHS-England for all GP practices to have a “Patient Participation Group” (PPG) and to make reasonable efforts for this to be representative of the practice population.17 A PPG is a group of patients, carers and GP practice staff who meet regularly to discuss the practice’s issues and patients’ experience with the aim of improving the service and ensure that patients and carers are involved in decision-­making. PPGs are meant to be “a critical friend to the Practice”. Their role includes advising the Practice from the patient’s perspective; providing insights into the responsiveness and quality of services; encouraging patients to take greater responsibility for their own and their family’s health; carrying 17  The first PPGs in the UK were established in 1972 and spread gradually throughout England. A “National Association for Patient Participation” was established in the early 1980s as a Charity registered in England and Wales (https://napp.org.uk/about/).

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out research into the views of those who use the Practice; organising health promotion events and improving health literacy; engaging in ongoing communication with the patient population (e.g., producing a regular Newsletter). Alongside these formal commitments, PPG members also engage in fundraising—to be used mainly for the purchase of medical equipment for the GP practice or the improvement of the premises—and organise volunteer services (e.g., car service for patients). Volunteer activities and fundraising are invaluable assets for NHS Trusts. Ethnographic case-material gathered across the East Kent University Hospitals NHS Foundation Trust (henceforth, EKHU) will help to illustrate significant aspects of these activities. Across the UK, “NHS Charities Together” raises funds to “enable the health service to go above and beyond what would otherwise be possible” (https://www. nhscharitiestogether.co.uk/what-­we-­do-­1/). It brings together 240 NHS charities. The “East Kent Hospitals Charity” is one of them; it raises funds for the wards and for the services provided by the EKHU. For example, the East Kent Charity has contributed to funding medical research, purchasing specialist equipment and sponsoring staff development. The EKHU also benefits from the work of other charities. A key role in fundraising is played by the “League of Friends” (“Friends”, in short). Five separate “Friends” support the five hospitals across the EKHU. Volunteers run fundraising events and use the proceeds to purchase extra equipment that improve the comfort of patients and staff and, crucially, help the hospital to buy expensive and larger medical equipment. Since its foundation in 1953, the “Friends” of Kent and Canterbury Hospital (K&CH) have contributed £8 million to the hospital, an achievement that was officially recognised in 2015 when they were presented with the prestigious Queen’s Award for Voluntary Service. Volunteers also help to run four shop outlets that serve patients, visitors and staff18 and organise a shop trolley and mobile library service to all wards throughout the hospital. In 2019, the Friends of K&CH donated £244,000 worth of equipment and other items to the hospital. Over the years, gifts have included a Mobile X-Ray, the Da Vinci Robotic Instrument Set, Chemotherapy Chairs, Operating Tables, Microscopes, Partition Screens, Wheelchairs and a Bereavement Suite.

18  Revenue from these shops accounts for the League’s single largest annual source of income.

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Other Charities, usually associated with specific pathologies, contribute to the EKHU’s services not only financially but also by providing healthcare support in the holistic sense, that is, physical, moral and psychological support. An illustrative case is given by the co-operation between cancer charities and the hospital staff. From the moment patients are diagnosed with cancer they are constantly supported at different levels, from being provided with the contact of a dedicated care-nurse—who several informants have experienced as an essential moral and medical resource—and a 24 hr Urgent Advice Line to home support and information and contact numbers for charities that can help in practical matters, such as the nationwide Macmillan Cancer Foundation. In line with the principle that healthcare includes all aspects of a person’s wellbeing, some charities organise workshops on how to cope with the impact of illness and the side-effects of therapies. For example, in the case of cancer, the nationwide charity “Breast Cancer Now” organises workshops for chemotherapy patients called “Look Good, Feel Better”. Lisa, a volunteer beautician, explained that these meetings are about more than giving suggestions on how to cope with hair loss and skin problems19; they are also meant to be a relaxing and socialising moment during a very vexing time; the patients with whom I spoke tend to agree. Another important service provided by the Charity is the organisation of meetings for patients who have completed their therapy. The meetings are aptly called “Moving Forward”; they are coordinated by volunteers over a 4-week period and involve professional nurses, dieticians and psychologists. Oncologists and cancer nurses strongly encourage former patients to attend these meetings. Denise, a volunteer who co-ordinates the meetings, reported that often people are initially sceptical about their usefulness, but soon realise their importance and stay in touch afterwards. She explained that, in view of re-establishing a “normal” routine in their life and “move forward”, people find useful to revisit their experience and compare it with that of other participants. “They discuss how their social relationships have been affected”, Denise says, “how they managed to cope with their family’s needs, and their experience of being those who were mostly in need of support. They also compare their experience of the whole clinical process, from the doctors’ attitude, which is indeed varied, 19  The Charity provides free skin-care and make-up products, which have been donated by cosmetic companies.

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to the nurses’ care and support.” The Charity also organises fundraising events throughout the year and provides free-of-charge in-person or telephone consultations with cancer nurses and other relevant professionals. The money collected through fundraising is used for the running of the activities described above and, mostly, to fund research. The EKHU Trust proudly acknowledges the support provided by the various charities, which can be financially substantial. For instance, during an interview, Rachel, a 35-year-old cancer nurse, said that “the dream of having a Mobile Chemotherapy Unit” was made possible, thanks to the donation made in 2013 by the charity “Hope for Tomorrow”. This mobile chemo unit is based at K&CH and is named “Caron”, after the daughter of the charity’s patron, who died after a 7-year battle with cancer. Caron is staffed by NHS chemotherapy nurses, who bring cancer treatment to patients who live in rural areas and are unable to travel, or who would suffer from being regularly transported to the hospital. Several nurses remarked that the strong commitment and co-operation across different sectors, including charities, have made it possible to continue to operate successfully during the pandemic. For example, the breast cancer charities continued to organise their workshops and meetings online, mainly via zoom, though they recognised the limitation that these events were accessible to people who had good internet connection and were “technologically savvy”. More generally, telephone consultations with the charity’s cancer nurses continued throughout and, I have been told, were particularly beneficial to newly diagnosed patients who felt isolated during the lockdown. The vital role of the voluntary sector is recognised in the 2021/22 implementation guidance of the “Integrated Care Systems” (henceforth, ICSs). The ICSs are described as “partnerships across local government, health, housing, social care and the voluntary, community and social enterprise (VCSE) sector” (https://www.england.nhs.uk/integratedcare/what-­is-­integrated-­care/). They have the aim of tackling inequalities and improving the population health and healthcare in their areas. In this new model of “community partnership”, the VCSE sector is regarded as “a key strategic partner” for the improvement and delivery of services, and the implementation of plans to tackle the wider determinants of health. According to the King’s Fund organisation (2018), around three million people volunteer in health and care.

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A “Labour of Love”: The Role of Nurses The nursing body is without doubt a major asset of the English NHS. The website of the Royal College of Nursing (henceforth, RCN) proudly states that the “nursing staff are the heart of hour health and care services. They care for us in hospital, advocate for us in our GP surgery and support us in our own homes” (https://www.rcn.org.uk). Today, English nurses continue to operate with the work ethics that distinguished Florence Nightingale, the nineteenth-century social reformer and founder of modern nursing. During my research in Kent, I have observed the unwavering dedication and commitment of nurses of all ages and at all stages of their careers. As Rachel stated, “[W]e are understaffed and underpaid, but we consider our profession as a mission, a ‘labour of love’”. Like many other cancer nurses, Rachel’s shift often includes working first with the mobile chemo unit and then at the hospital ward, where I saw her performing her duties always with a smile on her face. She was always available, as she said, “to have a chat and a laugh” with her patients. The many “Thank you” cards to all nursing staff pinned on the boards of the ward’s reception room testify to her and her peers’ commitment. Rachel and her colleagues, however, also point out that it is the whole NHS ethos that makes it possible to work with dedication and that makes the English public proud and supportive of the healthcare personnel. At the same time, they are keen to specify that they are not naïve and, especially those who describe themselves as “old school” nurses, forewarn that this ethos is at risk of waning due to today’s “detached”, bureaucratised training system. As Rachel stressed, part of nurses’ training is to experience first-hand the relationship with the patients, which can only be gained in the hospital wards, not in a “distant university classroom”. This approach to the relationship between nurse and patient brings out the ethical dimension of nursing. It is also somehow reminiscent of the charitable service offered by medieval hospitals to the poor and to pilgrims. That charitable assistance laid the foundation for urban policies that addressed the “common good”. Indeed, the hospitals that were established across urban Europe could be reasonably seen as the forerunners of the welfare ideal that informs the modern healthcare services (Prato, 2022). The Covid-19 pandemic provided a litmus test for the relationship between the general public and NHS staff. People felt a moral obligation to help and support the NHS frontline workers in a variety of ways, from delivering services and prescriptions to home-bound patients to cooking

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meals for NHS staff, from marshalling test and vaccination centres to organising donations and fundraising to buy new necessary, and initially unavailable or insufficient, personal protection equipment (Prato, 2020a). In recognition of the NHS forefront fight against the pandemic, in 2021, Queen Elizabeth II awarded the George Cross to the British national health services.20 In the post-pandemic scenario, nurses have become increasingly relevant, including at primary care level. Significantly, the WHO’s Health Act 21 places the role of nurses at the centre of the new health policies for Europe. This Health Act describes nurses as the key profession at all stages of the “healthcare pathway”, including health promotion, prevention and rehabilitation, and relief from the suffering caused by illness. In Italy, too, nurses are now regarded as key “mediators” between the patient and the various levels of health assistance. This recognition has led to the establishment of the family and community nurses (Spinelli, 2020) whose role is supposed to “free” family doctors’ time and, thus, improve the quality of their service and reduce patients’ waiting times.

Pandemic Ruptures and “Broken” Public Health Systems In his book Medical Nemesis (1976), the philosopher Ivan Illich describes how, in the twentieth century, medicine was gradually reduced to the application of a series of “technical” protocols for the cure of specific symptoms. In such a framework, the relationship between doctor and patient is regulated like a contract between an “operator” and a “customer”. In order to “promote” the quality and efficiency of the service, doctors are expected to perform their “technical duty” in line with the audit regime, which has paradoxically removed their attention from patients. The Covid-19 emergency has exposed the fallacy of such an approach. The unpreparedness of the Italian and British health services during the pandemic has shown that healthcare cannot be reduced to a series of bureaucratic protocols and statistical indexes21 on ambiguously measured “efficiency” and “resilience”. 20  The George Cross is the highest award bestowed by the British Crown for non-operational gallantry or gallantry not in the presence of an enemy. 21  Armstrong and Rosbrook-Thompson (2023) address similar issues in their analysis of the public health approach to urban violence.

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The pandemic emergency has once more exposed the dilemma of State intervention in the regulation of such an important public service and the protection of public health. As I have argued elsewhere, during the pandemic, governments appeared “to be using the ‘state of emergency’ as a political strategy to establish new forms of control, while skirting their responsibilities” (Prato, 2020a, p. 8), raising questions on the legitimacy of their action (Pardo, 2000; Pardo & Prato, 2019). In this scenario, existing inequalities have been exacerbated and new injustice generated (Prato, 2020a; Pardo & Prato, 2021). Meanwhile, governments’ verbal glorification of the health personnel as heroes has been used to misdirect people’s attention from the dramatic reality of the declining public health services and the urgent need for change. Inevitably, however, dissatisfaction and disillusion grow among doctors and nurses as well as patients. In both Italy and the UK, every year thousands of doctors abandon the public health service. Michael Marmot—author of several reports on health inequalities (see, e.g., Marmot, 2020)—has recently stressed that the pandemic was not a case of “all in it together”; not only, he pointed out, the pandemic exposed underlying inequalities in society, it amplified them. While praising the NHS as a “brilliant system”, Marmot believes that currently it is in “desperate straits”, arguing that “the fate of the NHS is intricately tied to the relationship between health inequality and social injustice” (Stanford, 2022). Reiterating a point made in his 2010 Report (Marmot, 2020), he has cautioned that “just as an education system for the poor is a poor education system, so too a health system for the poor is a poor health system”. Marmot was referring to the fact that, in England, one in 10 people are now going private because of the NHS long waiting list or lack of access to NHS treatments. In the UK, national and local media and social networks report almost daily on what is described as a “broken GP system”. Having moved to telephone and online consultations during the pandemic, GPs have continued to conduct almost entirely distant consultations; GP practices justify this behaviour as an “inevitable consequence” of very high demand and a limited workforce. Several nurses and some doctors have argued that this may result in serious conditions to be diagnosed later, or missed altogether. Of course, they say, this is bad for the patient, but it is also detrimental to the service as a whole because people end up needing emergency treatment, thus putting additional strain on hospitals. Worryingly, an increasing number of people who can afford to do so are using private GPs.

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In order to deal with these challenges, in the Autumn 2022, some Kent practices have announced the introduction of a new appointment system alongside e-consultation, whereby an “Urgent Care Team of GPs and Advanced Clinical Practitioners” will deal with medical problems that require same-day consultation. Other less urgent conditions, it is stated, will be dealt with by NHS health workers who may have a nursing, paramedic or midwifery background, including pharmacists, physiotherapists and mental health and social workers. Patients will be referred to the “appropriate” professional by a “Care Navigation Team” on the basis of the information provided by the patient over the phone. In Italy, the introduction of the aforementioned family and community nurses would play a similar role. Meanwhile, since 2021, nurses have begun to protest against what they describe as a “fragile health system”, pointing out that they have not forgotten the devastating number of dead patients and private tragedies during the pandemic. Pleading for changes in the system, they argue that they do not want “medals” but more resources that would allow them to provide the appropriate care in normal time and not just in time of emergency. Elsewhere, I have argued (Prato, 2020b, 2022) that future historians might describe the Covid-19 pandemic as a time of generalised “crisis”, but I have also pointed out that “crisis” does not simply carry the meaning of “danger”, it also signifies “to discern”, “to judge”, “to choose”. It compels people to make decisions and, thus, provides an opportunity for change. As I mentioned earlier, the pandemic “ruptures” only exacerbated an already critical situation, which national governments have claimed they will strive to remedy through several legislative changes. It has to be seen how the promises made during the pandemic will be fulfilled.

Conclusion: Resilience as a (Misleadingly) Legitimating Argument National governments argue that the ageing population and the increasing cases of chronic diseases are putting enormous pressure on the long-­ term resilience of public healthcare; so, they say, to avoid the collapse of their systems and eliminate health inequalities, it is necessary to reform delivery models of the service. New proposed models include moving the provision of “chronic” care outside hospitals, strengthening digitalization

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and promoting e-consultations. Strengthening the involvement of local communities and building on the tradition of volunteering and philanthropism are also presented as possible solutions against health inequalities. Most proposals, however, conceal more privatisation. For example, one thinks of the “choice” given to patients (including GP patients), both in Italy and in England, to opt for private care in order to avoid long waiting times. In England, although the public system dominates the provision of healthcare, private healthcare and a wide variety of alternative and complementary treatments are available for those who can and choose to pay. Across the UK, demand for private healthcare has indeed soared after the pandemic. Demand for self-funded treatments, including hospital admission, rose 39% in the two years to the end of 2021—higher increases were registered in Wales, Scotland and the East Midlands. Self-funded treatment is different than private health insurance, and in almost all cases, people resorted to self-pay because of the difficulty in accessing NHS care. In Italy, where people are already accustomed to buying “private” care, there is a push towards private schemes such as the “Supplementary health care funds for businesses”—which are supported by the main trade unions—and the so-called Health Cooperatives, which are promoted as a reliable enterprise model for health and wellbeing. Contrary to the build-up towards private healthcare experienced in countries like Italy and the UK, the Covid-19 emergency has demonstrated that the unpreparedness of these national health services was mostly due to the increasing penetration of the private sector into healthcare. The Covid-19 emergency shows that, if new policies truly aim to guarantee people’s wellbeing and free high-quality healthcare for all, the system must deliver more than healing and prophylactic guidelines. More generally, the two European ethnographies examined here expose the dilemma of how much State intervention is necessary to regulate such an important public service. Of course, healthcare systems need to be appropriately legislated and monitored. However, we have seen that rigid written rules do not necessarily deliver citizens’ right to healthy living. At another level, Italian and English health personnel point to staff shortage and lack of funds as fundamental areas on which government must act, beyond emergency times; at the same time, some of their justifications to abandon the national health system begin to be questioned by the general public who is affected by such shortage. The key point brought out by comparative analysis is that the quality and efficiency of the service rely on

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co-operation and, above all, on the ethics of responsibility of decision-­ makers and of those who deliver the service; too often, however, policy-­ makers ignore people’s experiences and needs, and deliver policies that satisfy the monitoring agencies but fail to enjoy legitimacy among those who have to live with them.

References AGENAS. (2021, March 26). La Riforma del Titolo V e gli effetti che ha avuto sulla sanità. Quotiniano Sanità. http://www.quotidianosanita.it/studi-­e-­ analisi/articolo.php?articolo_id=94026 Armstrong, G., & Rosbrook-Thompson, J. (2023). Interrogating the Public Health Approach: Lessons from the Field of Urban Violence. In I. Pardo & G.  B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 14. Palgrave Macmillan. Bauleo, L., Ancona, C., Morabito, A., et al. (2017). Studio di coorte sugli effetti delle esposizioni ambientali sulla mortalità e morbosità della popolazione residente a Brindisi e nei comuni limitrofi. CSAP. Bevan, G., Mays, N., & Connolly, S. (2010). Funding and Performance of Healthcare Systems in the Four Countries of the UK Before and After Devolution. The Nuffield Trust. BrindisiReport. (2016, May 12). Perchè l’eredità Melli non è nella piena disponibilità della cittadinanza? https://www.brindisireport.it/cronaca/perche-­i-­ beni-­della-­famiglia-­melli-­non-­sono-­nella-­piena-­disponibilita-­dei-­cittadini.html Chiazzarande. (2017, March 19). Ospedale Melli: un disegno che viene da lontano. http://chiazzarande.blogspot.com/2017/03/ospedale-­melli-­un-­ disegno-­che-­viene-­da.html DHSC-Department of Health and Social Care. (2012). The NHS Constitution for England. https://www.gov.uk/government/publications/the-­nhs-­ constitution-­for-­england Douglas, M. (1986). How Institutions Thinks. Syracuse University Press. Illich, I. (1976). Medical Nemesis. The Expropriation of Health. Pantheon Books. Koenig, D., & Diarra, T. (2023). The Fragility of Legitimacy: Access to Health Care in Manantali, Mali. In I.  Pardo & G.  B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 4. Palgrave Macmillan. Marmot, M. (2020). Fair Society, Healthy Lives. www.ucl.ac.uk/marmotreview Ministero della Salute. (2019). Rapporto Annuale sulla Attività di Ricovero Ospedaliero 2017. Rome: DGPS. Monbiot, G. (2002, March 10). Private Affluence, Public Rip-Off. The Spectator. https://www.monbiot.com/2002/03/10/private-­affluence-­public-­rip-­off/

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OECD. (2019a). Italy: Country Health Profile 2019. Paris/Brussels: OECD & European Observatory on Health Systems. OECD. (2019b). United Kingdom: Country Health Profile 2019. Paris/Brussels: OECD & European Observatory on Health Systems. OECD. (2021). Italy—Country Health Profile 2021. Paris/Brussels: OECD & European Observatory on Health Systems. Pardo, I. (2000). Introduction—Morals of Legitimacy: Between Agency and the System. In I.  Pardo (Ed.), Morals of Legitimacy: Between Agency and System. Berghahn. Pardo, I. (2004). Where it Hurts: An Italian Case of Graded and Stratified Corruption. In I.  Pardo (Ed.), Between Morality and the Law. Corruption, Anthropology and Comparative Society. Routledge. Pardo, I. (2023). Misgovernance Kills: Italian Evidence. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 3. Palgrave Macmillan. Pardo, I., & Prato, G. B. (2019). Ethnographies of Legitimacy: Methodological and Theoretical Insights. In I.  Pardo & G.  B. Prato (Eds.), Legitimacy: Ethnographic and Theoretical Insights. Palgrave Macmillan. Pardo, I., & Prato, G.  B. (2021). Querying Urban Inequalities. In I.  Pardo & G. B. Prato (Eds.), Urban Inequalities: Ethnographically Informed Reflections. Palgrave Macmillan. Prato, G.  B. (1993). Political Decision-making: Environmentalism, Ethics and Popular Participation in Italy. In K. Milton (Ed.), Environmentalism. The View from Anthropology. Routledge. Prato, G.  B. (2000). The Cherries of the Mayor: Degrees of Morality and Responsibility in Local Italian Administration. In I.  Pardo (Ed.), Morals of Legitimacy: Between Agency and System. Berghahn. Prato, G. B. (2018). Rethinking the City as Urban Community: Views from South Europe. In I. Pardo & G. B. Prato (Eds.), The Palgrave Handbook of Urban Ethnography. Palgrave Macmillan. Prato, G.  B. (2020a). Pandemic Emergency, Solidarity and Brutus Tactics. In G.  B. Prato (Ed.), City Life and Beyond in Times of Pandemic. Special issue, Urbanities-Journal of Urban Ethnography, 10(Suppl. 4), 3–13. Prato, G.  B. (2020b). Pandemic Ruptures. In G.  B. Prato (Ed.), City Life and Beyond in Times of Pandemic. Special issue, Urbanities-Journal of Urban Ethnography, 10(Suppl. 4), 105–108. Prato, G.  B. (2021). On Human Stupidity and Economic Policies. How Cities Inequality Generates Losses for All. In I. Pardo & G. B. Prato (Eds.), Urban Inequalities: Ethnographically Informed Reflections. Palgrave Macmillan. Prato, G. B. (2022). Healthcare Ethics in Urban Europe: Between Charity and National Welfare. In I.  Pardo & G.  B. Prato (Eds.), Healthcare and Public Health: Questions of Legitimacy. Special Issue of Urbanities-Journal of Urban Ethnography, 12(Suppl. 6), 8–15.

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Spinelli, L. (2020). L’infermiere di Famiglia e Comunità: Il coinvolgimento della popolazione come chiave di sviluppo. Unpublished B.A.  Thesis, University of Florence. Stanford, P. (2022, October 10). Why the ‘Jaw-dropping’ Poverty Health Gap is About to Get Worse. The Telegraph. https://www.telegraph.co.uk/health-­ fitness/body/why-­jaw-­dropping-­poverty-­health-­gap-­get-­worse/ The King’s Fund. (2018). The Role of Volunteers in the NHS. www.kingsfund.org.uk The Lancet. (2018). Measuring Performance on the Healthcare Access and Quality Index, 391, 2236–2271. https://doi.org/10.1016/S0140-­6736(18)30994-­2

CHAPTER 3

Misgovernance Kills: Italian Evidence Italo Pardo

For irresponsible, inefficient or “just” dishonest élites, doing Good Government is notoriously a burdensome, sometimes vexing nuisance. In non-totalitarian regimes, this is highly problematic. Recent events in the democratic world powerfully testify to the consequences of the dominant elites’ wilful failure to exercise good government and listen to the instances of citizenship. A few years ago, the publisher of a volume on Citizenship and the Legitimacy of Governance (Pardo & Prato, 2011) printed on the cover, side by side, significant details of the frescoes of Good Government and Bad Government painted by Ambrogio Lorenzetti between 1338 and 1339 in the Palazzo Pubblico in Siena. To this day, those frescoes summarize well these two opposing “styles” of government and the injustice, inequality, abuse of power, mismanagement of public life, legal and illegal corruption, ideological bias that bad government brings to the life of the ordinary citizen. In this chapter, I examine the ramified impact of bad governance in areas of life that matter most to citizens: public health and healthcare.

I. Pardo (*) School of Anthropology and Conservation, University of Kent, Canterbury, Kent, UK e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 I. Pardo, G. Prato (eds.), The Legitimacy of Healthcare and Public Health, Palgrave Studies in Urban Anthropology, https://doi.org/10.1007/978-3-031-25592-2_3

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As a Social Anthropologist, very much in line with Giambattista Vico’s teachings (1999 [1725]) on the significance of empirically grounded thinking as a scientific sine qua non, I subscribe to the methodological imperative that a serious study must be based on the in-depth involvement of the researcher in  local processes over a long period of time (Pardo, 1996, 2017). I have chosen to focus on the Naples case because the ethnography offers exemplary insights into key dynamics of responsibility in the exercise of power that, in democracy, jeopardize the relationship between citizenship and governance.

A Triple Whammy to the Ordinary Italian In a functioning democracy, rulers are duty-bound to guarantee legal rights and safeguard public health and safety. In the 1900s, as many European states adopted universal access to health care, education, housing and social insurance, social citizenship (Marshall, 1950) complemented and reinforced the civil and political citizenship established in Western Europe and North America in the eighteenth and nineteenth centuries. Things have since gone badly wrong. I draw on the anthropology of “legitimacy and governance” (Pardo, 2000, 2019; Sarduski 2008; Björklund Larsen, 2010; Pardo and Prato eds 2011 and 2019), my long-­ term field research in Naples (Pardo, 1996, 2017) and the material collected during the pandemic (Pardo, 2020) to take a disenchanted look at misgovernance that kills people, as, regardless of political colour, weak or absent personal and institutional responsibility deeply undermines ordinary people’s health and safety. In what follows, I examine key philosophical questions on the conflict between de jure and de facto legitimacy that matter to our health and futures: official, legal sources of information about what is legitimate say one thing, based on some elitist arbitrary morality (Pardo, 2000, 2019); at the grassroots, the view of what is legitimate says another thing, based on people’s lived experience. A persistent puzzling question (Pardo, 2019) is how claims and actions that are seldom scrutinized for credibility but enjoy media spin can be made pseudo-legitimate by political parties, interest lobbies and small but noisy militant groups, who do not have official legislative or administrative power but aim to determine what others may do, or even think. In a national scenario riddled with the prejudice that the citizen is somehow in debt with the system and despite having paid taxes must pay for services, misgovernance of the public good has dealt a triple whammy

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to ordinary Italians’ fundamental rights of citizenship. The sinister undertones need to be spelt out. First, when the Italian Servizio Sanitario Nazionale (National Health Service; henceforth SSN) was established in 1978 (law 833/1978), it was illegal for  medical personnel to practice privately while publicly employed.1 This principle was substantially reversed in 1992 with the approval of law 421/1992. This new legislation allowed publicly employed medical personnel to operate also in private establishments and made it possible for the SSN to “sub-contract” care to the private sector and import managerial practices from the latter (Pardo, 2004), thereby demonstrating a key point in the anthropology of law (Pardo, 2004) about actions which are dodgy but do not always strictly break written rules because they are not adequately dealt with by the existing legislation or because they are made to be legal through expedient changes in the law. As explained by Prato in this book (Prato, 2023), this, and later changes, triggered a pernicious privatization of the SSN (Fondazione Gimbe, 2019), leading to the re-­denomination of local public health authorities, now tellingly called Azienda Sanitaria Locale (literally, Local Healthcare Corporation); the acronym is ASL (Prato, 2022: 10). Alongside crippling cuts to the tune of 37 billion Euros,2 these changes have combined with greed, unscrupulousness and illegal and not-strictly illegal behaviours of some ASL bureaucrats and medical staff to fuel a betrayal of the duty of care.3 Second, the mismanagement of public property and waste and the factual appeasement of illegal behaviours have generated serious health hazards. Third, the pandemic has magnified shambolic governance,4 and the attendant questionable ethics, and social and regional inequality in terms 1  We shall see that this principle, reiterated in separate legislation (law 229/1999), is betrayed by widespread exploitation of loopholes. 2  In the process, 70.000 hospital beds and 46.000 staff were lost (Fondazione Gimbe, 2019) with grave consequences, especially in the South (Maraniello, 2020). According to OCSE, the current investment in Italy’s SSN is 3% lower that the Western average. 3  But see also law 127/15.5.1997, which shifted the emphasis from propriety to efficiency in the running of public services and law 158/2012, which was supposed to regulate more efficiently the relationship between the SSN and the private sector and engagement in the latter of publicly employed personnel. In separate works (2004, 2011, 2019), I have discussed the disruptive effects of legislation that makes legal what was illegal but continues to be regarded as illegitimate and immoral in the wider society. 4  On the clumsy attempts at covering-up incompetence, inefficiency, bad decisions during the pandemic, see Giuffrida (2020b).

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of welfare and public health (SVIMEZ, 2020). At the same time, a long-­ standing political bias has translated into political action that discriminates against the self-employed and small businesses, thus impoverishing a large proportion of the population with serious consequences on their physical and mental health. Amid rulers’ breaches of trust and authority, the impact of the three interacting processes that I have outlined on ordinary citizens’ lives embodies a tyranny of inequality (Arendt, 1951) that needs attention. Over the past 30-odd years I have built an understanding of local processes through the systematic application of participant observation, interviews and the construction of case-studies of individuals and events among ordinary people and élite groups in the media, the medical and legal professions, business, banking, the trade unions and politics (Pardo, 2017). I have been lucky to meet and establish strong relationships with many “Docs”—after Whyte, 1943—favourite informants from across society who have helped me to orient myself in the local dynamics. I am honoured that many of these relationships have grown into friendship and collaboration. This has also meant that when not in the field I can stay in touch with local events via telephone, email and Skype.5 During the pandemic, these personal relationships came to a head, integrating the points excellently brought out by Rutherford (2020) and Prato (2020); respectively, what to do when the field cannot be physically reached and the misrepresentation of COVID-19 as an “indiscriminate hitter”.

Misgovernance Kills 1: Public Health Care from Right to Commodity to Privilege Italian citizens have a constitutional right to health care (Costituzione della Repubblica Italiana, 1947: Art. 32). Cast in a Region whose quality of government is classified last in the EU (Charron et al., 2021),6 Naples exemplifies rulers’ mismanagement of this fundamental principle. Between the fourteenth and nineteenth centuries, Naples was at the forefront of medical assistance to all (Colesanti & Marino, 2016). Not anymore. Here, the SSN has long been underfunded, understaffed and 5  As indicated by the reports cited throughout this discussion, local investigative journalism has also produced useful information. 6  Campania, the Naples Region, is one of the 20 Italian Regions, each administered by a Regional Authority.

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poorly resourced, leading to poor care and deaths.7 Making short shrift of what, let me stress, is a citizen’s right, not a concession by the state, the bad governance that has long plagued the city (Pardo, 1996, 2019, 2021) has combined with the medical, moral and ethical challenges to the Hippocratic Oath engendered by personal dishonesty and bad national and Regional legislation.8 As elsewhere in the EU (Prato, 2023; Sarfati, 2023) and beyond (Arnold, 2023; Channa, 2023; Kayaalp Jurich, 2023; Koenig & Diarra, 2023; Olson, 2023; Prato, 2022; Rama, 2021; Sarfati, 2020), the pandemic has brought into sharp focus the inadequacy, disorganization and inefficiency of the SSN and its regional ASLs, and the stratified corruption—illegal and legal (Pardo, 2018)—that mars the “public” health system.9 Alongside a systemic failure and the corrupting ramifications of ongoing privatization, it has emphasized both the practice of paying bribes to access health services and élite groups’ perverse sense of entitlement, whereby well-connected individuals—politicians, bureaucrats and professionals—“behave”, in the words of my local informants, “as if they were superior beings”. For instance, in a country where queue-­ jumping is not unheard of, many privileged (politicians, journalists, professionals) get preferential medical treatment, including during the pandemic—“disgustingly”, people say, at the expense of the elderly and people at risk.10 Disgust echoes in the remarks of many informants. Referring to events duitng the pandemic, Enzo (see later) typically said, “It’s angering that many big shots cunningly stayed just inside the law as 7  The cases of hospitals specializing in cancer research and care and in infectious diseases are emblematic examples. These hospitals were rightly regarded as national centres of excellence until the mid-1970s. The cited new legislation brought increasingly underfunding and subsequent decline. 8  Prato (2023) explains how many regulations in this field fall under the remit of regional authorities. As testified by informants’ remarks (see later), this produces confusion and inequality across the country, inducing South-to-North “health” migration, also of doctors who work in the South but choose to be treated in the North; see, for instance, SVIMEZ (2020), Banca d’Italia (2020) and the open letter by one of them reported in a local paper: http://corrieredelmezzogiorno.corriere.it/napoli/cronaca/18_marzo_14/marfella-amo-listituto-pascale-piu-quanto-tema-mio-cancro-6cc26df4-2758-11e8-89ed3e6c0875554d.shtml. 9  Exemplifying illegal corruption, 48 people are currently on trial in Naples (Napolitoday https://www.napolitoday.it/cronaca/camorra-ospedali-processo-richiesta-pene.html). 10  Among the many media reports on this disgraceful practice, see Bechis (2021) and Giuffrida (2020a), giving rise to judicial investigations (Il Tempo 2020: Covid, scandalo furbetti del vaccino in Puglia: 53 indagati dalla Procura di Bari – Il Tempo).

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they accessed the €600 coronavirus relief payment that proved elusive for many of us, and that they—some quite young, you know—jumped the vaccination queue, while my elderly parents haven’t been yet vaccinated”. The festering malfeasance of some ASL staff, and the ensuing tension between legality and legitimacy in the exercise of medical responsibility, has obnoxious ramifications for ordinary people’s health and lives. In Naples, I have met many honest, competent and dedicated medical professionals who are underpaid, and not always on time, and must work with faulty or obsolete equipment in appalling conditions,11 yet selflessly continue to abide by the sacrality of the science and conscience principle, putting their mental and physical health on the line—often fatally, as during the pandemic, when medical staff died alongside their patients. In sharp contrast, a minority of poorly qualified personnel and unscrupulous practitioners (not always professionally incompetent) motivated by monetary and professional greed betray both responsibility and trust in the patient-­ carer relationship, as they contribute to fostering a dangerously poor standard of public health care. On a higher, interacting level, several judicial investigations have proved that bribery, embezzlement of public funds, abuse of power and pursuit of private interest in public office reach well outside national boundaries, thriving on a political torpidity and legislative weakness that feed a convenient ambiguity about what constitutes illegitimate behaviour in public life (Mautone & Pappalardo, 2020). In the 1990s, the convictions of a large number of powerful individuals (including the Minister for Health and several top civil servants) that followed through investigations into high-level corruption in the health service (Miller et al., 1994) raised people’s hope. Today, the continuing corruption of tightly networked medical personnel, bureaucrats, politicians, trade unionists, pharmaceutical firms, contractors and professional criminals (Beneduce, 2021b) may often  be insidiously unobvious to the ordinary man and woman, but its malignant implications are nonetheless painfully real. At risk of labouring the point, it cannot be overstressed that healthcare is a right, not a privilege. Most of our taxes, I contend, should be used to ensure that the best possible healthcare is accessible to all citizens free of 11  Dirty wards, insect infestation and vermin continue to be reported; see, for instance, https://www.ilmattino.it/napoli/cronaca/ospedale_san_giovanni_bosco_materazzo_ pucillo_formiche_sospensione-4591618.html

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charge. Yet, the empirical evidence on the relationships between the patient and ASL carers says otherwise. It illustrates the ugly distortions that occur when rights are passed off as concessions or even as favours, which turns the right to health care into a transactionable asset, à la Bailey (1969). ASL staff who obtained their jobs (and often their qualifications) through clientelism or bribery12 not only do as they please, including skipping work while having their presence card punched in by others,13 but supplement their income by granting favours, such as jumping hospital waiting lists, facilitating job transfers and so on. To the dismay and intimidated silence of the honest but less protected staff, they remain unpunished,  benefiting from  the protection of their powerful connections. As some become trade unionists, they strengthen their power, enjoying a “systemic complicity” among unscrupulous officials and practitioners that their honest peers across the board describe as both “profoundly repugnant” and “very difficult to break”. My informants across the socio-economic board  describe this distortion as despicable corruption. Meeting classic themes in the anthropological literature on legitimacy (Pardo, 2000; Pardo & Prato, 2019), they wish they “could have access honestly and straightforwardly” to the public services to which they are entitled. However, it must be noted that, despite contextual efforts to turn citizens into supplicants for public services, having to seek favours does not necessarily make ordinary people subaltern or intrinsically dishonest (Pardo, 1996: Ch. 6). My informants strive to avoid “depending sheepishly on some power-holder”,14 especially when it comes to one’s and one’s dearests’ health. The multiplication of contacts in each specific field allows people to use a “privilege” repeatedly (even on others’ behalf) without having to negotiate increasingly inconvenient terms with the same favour-bestower. For instance, many know more than one doctor 12  For a recent example of this kind of nationwide corruption in politics and the SSN, and the subsequent arrests, see Beneduce (2021b) and https://www.iltempo.it/attualita/2021/07/01/news/concorsi-truccati-asl-latina-2021-arrestato-claudio-moscardellisegretario-provinciale-pd-27797006/ Judicial investigations into these wrongdoings are of course commendable, but in my experience they address the tip of this toxic iceberg. 13  This behaviour is widespread across the public employment sector. In this field, it has especially disruptive ramifications. 14  This links directly to the Neapolitan say, Chi pecora s’ fa ‘o lupo s’a magna (If you behave like a sheep, you’ll become a wolf’s meal), which, as I have explained elsewhere at length, belongs to a culture of sapé fa (cleverness) informed by the principles, aiutat’ ca Dio t’aiut’ (God helps those who help themselves) and Nun voglio sta’ suggett’ a nisciun’ (I don’t want to be subject to anyone).

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willing to certify non-existent illness (for sick leaves and other reasons) in exchange for gifts, simply to be kind or sympathetic, to keep their practice in favour, or to obtain their patients-turned-into-clients’ votes on their behalf or on behalf of their politician friends.15 Typically, Lino, an elderly stall-holder, has long cultivated medical practitioners as potential resources. He said, “Take a bed in hospital. If I can’t get it straightaway, it could be because the doctors judge that I don’t need it urgently but I can’t be sure that it isn’t because I haven’t got the right recommendation or haven’t paid the right bribe.” Clearly, rights-­turned-­ into-privileges not only encourage illicit transactions but, as Lino said, “are deeply unfair to the honest, or the unconnected, among us. Still, I hate to have to pull strings to get what I’ve a right to: speedy diagnosis and therapy, clean bedlinen, proper nursing, etc.” Pointing to a common problem, Mimmo, a 42-year-old postman, said, “My mum was left for 24 hours in a makeshift bed in a corridor. I gave a 200-Euro bribe to a nurse, who had her transferred in a proper ward. I don’t know how he did this. I felt guilty, though, because other patients remained in the corridor. But she’s my mum, you know!” Bringing out another aspect of this corrupt picture, Imma, a 36-year-old grocer said, “[M]y little girl was very sick, but her operation was assessed ‘non-urgent’ and she was put on a long hospital waiting list. On a nurse’s advice, I opted for private care in the same hospital and my daughter had surgery within two weeks. My savings are gone, but her tumour was removed in time, before it spread, and she’s fine now.” Faced with long waiting lists, shortage of beds, bad facilities and inefficiency in public hospitals, some who can opt for private care; some who cannot but are made to, borrow money, often falling into a spiral of debt that ruins their lives. Some bureaucrats and medical personnel exploit the loopholes in the law to operate as contact points for private establishments; in short, they peddle to their ASL patients the services of the private establishments where they can also legally work. Informants who “lack the right connections” reported in detail how public health sector staff exploit the patient-carer relationship to bully people into buying private care, usually without obtaining a receipt from the tax-dodging

15  As judicial inquiries have proved, when false illnesses are certified for invalidity claims (giving access to benefits, pensions or priority in job applications), this scam involves the complicity of corrupt doctors, bureaucrats and lab technicians.

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practitioners, who do not charge VAT and sell the deal to the patient as “mutually beneficial”.16 Luisa, a 49-year-old stall-holder in a local street market, typically said, “I was enormously grateful to the cardiologists and nurses who took such good care of me in hospital. On discharge, a cardiologist said I could see her privately throughout my long-term post-hospitalization treatment, which I did because I trusted her but had to borrow money I didn’t have.” Shared by many informants, the experience of Ciro, a 55-year-old teacher whose skin cancer is in remission, exemplifies the interest of some practitioners to foster inefficiency and sluggishness in the ASL. He said, “[I]t was a dreadful time. After a long delay and several postponed specialist appointments, I finally had several tests and an operation, for which I had to pay […] ‘to speed thing up’. Throughout, I had to endure the arrogance and carelessness of some personnel.”17 Then, Ciro’s oncologist said that he needed a second operation and further treatment. As this second operation was only partially successful, he peddled “the high-level care and facilities” offered by a certain, notoriously expensive, private establishment. Ciro’s wife, said, “as we had some savings, we took that route but there was no real progress and, as we soon ran out of money, I was prepared to mortgage our salaries and our house to pay the medical bills, travel and accommodation”. Ciro, however, decided to reapproach the ASL; as I explain later, this time with good results. He felt mistreated and exploited, like other informants who under similar pressure have bought private care and now resentfully say that in the emotionally charged circumstances surrounding their or their families’ illnesses they felt they had no choice. Graphically reminiscent of Rama’s (2021) heartrending description, my informants tell of doctors who cleverly circumvent the law (law 158/2012), as they prescribe expensive (often unnecessary) tests in private facilities that they “know and trust” and that “operate speedily”.18 Some of these facilities are on the ASL’s official list and, depending on the patient’s income, the cost is covered in part by the ASL. Similarly, 16  Among the many cases of such behaviour that make the headlines, see Vesuviolive.it 25 May 2022 at Medico del Pascale sospeso: “Ti opero in clinica, in ospedale non c’è posto” (vesuviolive.it). 17  Media reports abound. See, for instance, https://corrieredelmezzogiorno.corriere.it/ napoli/cronaca/19_giugno_07/noi-ammalati-tumore-dobbiamo-pagarci-cureesami-9a8c3e30-8946-11e9-b250-10fe1a53aac1.shtml 18  Doctor may get “informal fees” for the patients sent there.

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depending on their income, patients pay a proportion of the cost of medicines; in some cases, when the prescribed medicine is not available through the SSN, people have to pay the full cost, regardless of their income (see also Prato, 2023). Informants among the medical profession also pointed out that unscrupulous colleagues unnecessarily refer patients to illustrious specialists elsewhere in Italy or abroad in the interest of their own careers, or prescribe the more expensive products of certain pharmaceutical companies in exchange for money or free holidays for them plus one, often disguised as medical congresses. Some of these actions are illegal, therefore relatively easy to identify and prosecute; some, however immoral, are strictly legal, therefore impossible to prosecute. A powerful consultant is known for appointing his clients to medical and paramedical jobs, regardless of whether their competitors are better qualified. Like other fellow consultants, he is also a powerful academic. His clients in the ASL and the academia remain obliged to him and he can trust them to turn a blind eye on “things not done by the book”, he says euphemistically, and to work “informally” in the private establishments where he has an interest. Once a corrupt ASL functionary or top doctor sells his or her office, contracts suddenly multiply. On the other hand, my fieldnotes also record the professionalism, dedication and kindness of many doctors and nurses, who are profoundly appreciated at the grassroots. A few examples will help to illustrate the point. Ciro’s new GP, recommended by a neighbour, referred him to an oncologist in a different local hospital. A successful operation was performed. No money changed hands; no inappropriate requests (e.g., electoral support, sexual favours, payment in kind and so on) were made. Ciro said, “[W]e were enormously grateful and when we told him so, he said he was only doing his job. I still remember him and the care and dedication of the wonderful nurses.” I have also met highly skilled ASL practitioners who have opted to operate semi-privately. They do their duty in the hospital where they work and where they meet many patients, some of whom they later treat privately. They usually charge them on the first consultation (usually 100 Euros) and then see them free of charge on several follow-up visits. Others, like Claudio, an ASL paediatric consultant who also sees patients privately, charge only those who can pay. On many occasions, I witnessed him treating without charge children’s diseases caused by living in damp lodgings and unhygienic conditions. “I’m no Robin Hood”, he says, “but I’m well

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off, and anyway I charge fairly those who can pay”. Every night Gino, a GP, visits elderly patients who live alone; evidencing an important aspect of the Hippocratic principle of “conscience”, he says, “most don’t really need me as a doctor, but they do appreciate the human contact”. Like other GPs across Italy, he continued to see patients during the pandemic, becoming infected with COVID-19 and recovering after a longish self-­ isolation and self-treatment. Massimo, a renowned surgical oncologist, whom I met in the early 1980s, is a consultant in a local hospital but also lawfully operates in a private clinic with highly skilled assistants, some of whom also work with him in the hospital. Most of his private patients are well-off. They choose this option, as opposed to a hospital stay, because it offers speedier procedures and better accommodation. Massimo tells me that patients on the hospital waiting list are all seriously ill but most can wait their turn. Some he treats privately; “I and my team never charge those who can’t pay”, he says. The many cases of professionalism, integrity and good-heartedness notwithstanding, it is clear that the progressive privatization of large sections of the ASL has engendered a perversion of the system at the expense of people’s health. At the receiving end, it matters little whether the moral bankruptcy and corruption of some is legal or illegal; because it occurs in this absolutely critical field, it is invariably resented as despicable. The unscrupulous practices that I have outlined exemplify a familiar theme in the literature on corruption (Pardo, 2004, 2018), as the corrupt both claim that most who have their power behave similarly and seem unconcerned that their greed may harm their patients. On the strength of legalistic technicisms that remain obscure to ordinary citizens, they mostly do so without committing crimes but betraying, nonetheless, basic principles of legitimacy in the spirit and in the letter. That these people commit no crime matters not to my informants, who both recognize and despise the corruption of the best as the worst kind of corruption—a rot long known to Western wisdom and well encapsulated by the ancient phrase, corruptio optimi pessima. What matters to ordinary men and women are the practical ramifications of the (mostly legalized) corrupt metamorphosis of the right to healthcare into a “commodity”. What matters to them is that, adding scorn to injury, all-too-often—and usually, preposterously, publicly—this “commodity” becomes a privilege, as they see that the powerful and the well-connected systematically benefit from preferential treatment. What matters to our analysis is that the insidious, malignant impact of these actions is invariably received at the grassroots as a betrayal of the “first do

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no harm” principle—a despicable corruption that hits one when one is at one’s most vulnerable. In a nutshell, understandably but worryingly, ordinary people have lost trust in the medical field, and honest doctors and nurses feel demoralized and demotivated, thus unwittingly aggravating the situation.

Misgovernance Kills 2: Public Health Hazards Beyond Naples’ natural beauty and historical and artistic attractions— often in disrepair or difficult to get to—there, everyday life is gloomy and dangerous. The complex dynamics that I have outlined so far compound the public health hazards generated by rulers’ mismanagement of public space and waste. Informants from across society share anger and disgust at what they describe as a “glaring conflict” between the grand claims of renewal and betterment made by their administrators and the on-the-ground reality marked, among other things, by pulmonary and infectious diseases, urban decay and mismanaged public property causing accidents and deaths (Il Mattino, 2019; La Repubblica Napoli, 2019; NapoliToday, 2022), and the dearth or absence of public services (Geremicca, 2022). Continuing administrative failure impacts heavily on their lives and informs their growing distance from what they unanimously castigate as “bad powers-that-be”. In Italy, City Councils are responsible for the upkeep of urban roads, pavements and public buildings, for local public transport and for rubbish collection and disposal. In Naples, there is no good value for money, when it comes to public services. Residents are charged a comparatively very high council tax (Di Biase, 2021) that is intended to pay for a clean and safe urban environment that remains, instead, hazardous.19 The local mismanagement of public welfare is the product of a failed style of governance whose political colour has basically remained unchanged for several decades. Direct testimonies of road crashes and pedestrian accidents caused by badly maintained public property meet local hospitals’ emergency departments’ reports of daily occurrences of broken bones and

 This dominant style of governance has marred central government, too (Pardo, 2021).

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other serious injuries and deaths.20 This occurs in lethal combination with mismanagement of waste and the consequent pollution. Across urban Italy, mismanaged waste kills (Beccarello & Di Foggia, 2017). Neapolitans pay a rubbish collection and disposal tax on top of the council tax; yet, both before and during the pandemic public space has yielded medieval visions of filth (Pardo, 2011) that persist today (Geremicca, 2022). Uncollected rubbish and the associated vermin, stench and exhalations account for one critical aspect of this degenerating urban context that seriously jeopardizes public health. Residents are to deposit household waste daily in dumpsters permanently placed by the walk-side.21 The Council must provide dumpsters in sufficient numbers and must keep clean them and the sites where they are located. Rubbish collection is the responsibility of the Council’s sub-contractors. As collection falters with appalling regularity and the dumpsters overflow, especially in the less affluent areas, public space becomes chocked with rubbish left to the mercy of the elements and of cockroaches, roaming rats, stray cats and feral packs of dogs ripping open the uncollected rubbish bags. Public health thus remains an urgent issue at a very elemental level and, as governance keeps failing to act, people occasionally burn rubbish where it lays, thus unwittingly contributing to increase burning eyes, nausea and pulmonary diseases. This unhealthy setup has long been magnified by the practice of shallow-­ burying poisonous household and industrial and hospital waste in dumping sites at the periphery of the city and by the huge stockage of illegal waste bales (Euronews, 2015; Pardo, 2011). While much rubbish is not collected, over time, the conversion of that which is collected has produced an estimated 2 million of illegal bales that lay decaying in the open air, slowly polluting air, soil and water. The firms contracted by the Regional Authority failed to pack rubbish into sufficiently “dry” bales that when incinerated do not produce toxic fumes. The criminal investigation of 23 local rulers (Beneduce, 2020) alleges failure to check false certifications on the work done and to address this situation. Meanwhile, deaths caused by pulmonary diseases, cancer and congenital malformations that 20  The city is dotted with large pot-holes, overflowing sewage, falling trees and light poles, broken or uneven walkways and pieces of masonry that fall from public buildings (Il Mattino, 2019, Repubblica Napoli 2019). 21  By Council regulations, rubbish is to be placed in the dumpsters between 8 p.m. and 8 a.m.

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far exceed the Italian national average (Beccaloni et al., 2020; Beneduce, 2021a; Winfield, 2016) have multiplied exponentially, especially among children.22 While this has caused public outcry, a less high-profile waste-related ramification that needs brief attention is contributing to jeopardize public health. Across central Naples, as for example in similarly misgoverned Rome, the waste problem is exacerbated by a growing “rubbish trade” (Pardo, 2020), whereby illegal immigrants peddle objects—shoes, handbags, clothes and so on—scavenged from dumpsters and displayed on rugs on the pavement (Folle, 2020, 2022). Residents, shopkeepers and autochthonous and legal immigrant traders have lodged detailed complaints but have lost hope in persuading the local authorities to clean up their neighbourhoods and stop the illegal rubbish trade. Exemplifying these grievances, a shopkeeper said, “[S]ince these people started doing this, sales have dropped by 50% because the street is always dirty and unhealthy”. In spite of raising serious concerns for public health, this activity has remained unchallenged throughout the pandemic (Folle, 2020). In my informants’ view, the Naples government is directly responsible for this combination of dangerous occurrences. Residents and legal traders fear for their health and security. An explosive social and political situation brews.

Misgovernance Kills 3: Ideologically Misguided Policies Earlier, I pointed to the inequality between the privileged and “the others”. Let us now dwell briefly on “the others” and consider the inequality between the secured and the unsecured. The historical bias of a certain political ideology against the self-­ employed and micro and small entrepreneurs is known and widely discussed in the literature (Pardo, 1996: Ch. 2; Pardo, 2017: 39–43; Pardo, 2021). This bias has played a key role in discriminating between the guaranteed, who enjoy secure, trade-union-protected employment mostly in the overstaffed and historically clientelism-ridden public sector, from the non-guaranteed, who are traditionally forced to fence for themselves. In this environment marked by extraordinarily high formal unemployment 22  A graphic testimony to this is offered by several documentaries, like those listed at the end of this chapter.

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(Banca d’Italia, 2020; ISTAT, 2022), most informants are (by choice or often perforce) self-employed (Pardo, 1996: Ch. 2; Pardo, 2017). They have developed excellent entrepreneurial abilities, unfortunately mostly limited by the context to the micro and small level. In recent decades, “those in command”, as my informants contemptuously dub their rulers, have stubbornly shown unfamiliarity with a fundamental democratic rule: power must be determined by the electorate, and its exercise must take place under a regime of responsibility within publicly recognizable limits. I shall return to this important issue later; for now, it will suffice to point out that rulers who are mostly unelected but appointed by political bosses who manage State powers to serve their and their gang’s interests have used the pandemic as a convenient Trojan horse to grab extraordinary powers. The structural inequality that has long marred life in Naples (Pardo, 1996, 2021) has taken a fatal turn for many ordinary citizens during the COVID-19 pandemic. We have all heard the rhetoric that this virus “reminds us that we are all equal”. In Italy, as elsewhere (Prato, 2020b), reality has proved to be very different. Alongside the inequality between the well-off and the not-so-well-off, the spread of this horrible disease and the measures that purported to fight it have brought out the inequality that separates the guaranteed, who enjoy secure, mostly public, employment, from the non-guaranteed. The  ISTAT (2020, 2022) and Italy’s Central Bank (Rondinelli & Zanichelli, 2021) report that over 50% of Italians—particularly the non-guaranteed—are close to the poverty threshold. The leftist sociologist Luca Ricolfi (2021) has argued that the leftist government headed by the unelected Giuseppe Conte—at the time, an obscure lawyer—discriminated against the non-guaranteed, while safeguarding the trade-union-protected steadily employed. With reference to 2020 data, Gian Carlo Blangiardo, the President of the ISTAT, remarked (Il Tempo, 24 May 2021) that the massive increase in poverty is explained by the loss of jobs and income, especially among the self-employed and small entrepreneurs. The latter have been left without protection because their protection is work and their work has been sacrificed in the name of the false conundrum of balancing the interests of health with those of the economy. This adds to the impact of the pandemic on the health service. “We paid such a high price during the pandemic”, Blangiardo added, “also because […] investment in healthcare had been greatly reduced. […] We have seen an increase in the average age of doctors, the burden on doctors themselves, the smaller workforce in some medical sectors and

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decidedly fewer resources. […] This made it much more difficult to intervene when emergency conditions arose.” Let us unpack the above ethnographically. Southern Italy is notoriously undermined by a long-standing dearth of formal employment (Banca d’Italia, 2020), which combines with policies—unpaid “internships”, “apprenticeships” and other fancily labelled “qualifications”—that fail to facilitate access to “proper” employment. Formal jobs are few and permanent jobs fewer.23 Informal economic activities keep multiplying.24 In this scenario, a large proportion of the ordinary Neapolitans whom I have met are self-employed or work informally employing complex and highly varied strategies that demonstrate the weakness of the “dual economy” view as they draw heavily on the complex relationships between the formal and the informal (Björklund Larsen, 2010; Pardo, 1996). They never enjoyed income security and the attached benefits. Echoing key points raised by anthropologists (Prato, 2020a), during the pandemic, none received government help or assistance, monetary or otherwise. Many lost their jobs and were forced to eat their few savings from a lifetime of “work without a parachute”. As always, they could count only on themselves. For them, the State has traditionally been a Kafkaesque beast that feeds the guaranteed and leaves all others to languish, remembering them only when it forces on them ever-raising taxes and costly red tape, which involve the ever-present risk of driving them out of business. Now they also have had to endure an official rhetoric of the kind “we realize your sacrifice”. And yet, though torn to pieces by the pandemic and misgovernance, they do extraordinary acts of generosity (Pardo, 1996: Ch. 2). To cite one recent example (Euronews.com, 2020), during lockdown, ordinary Neapolitans invented what became known as “solidarity baskets” lowered on a rope from windows and balconies; they contained food and a note saying, “those who can please put foodstuff in, those who can’t please take what you need” (Prato, 2020b: 6). During the pandemic, as I was locked-in in the U.K., my communications with my friends in Naples gradually grew into intense email 23  Even considering that in this field official data only offer a partial picture, it is still interesting that, according to the Italian Office of Statistics, unemployment in Naples has reached 21.5%, of the active population, raising to over 40% among the young (http://dati.istat.it/ Index.aspx?QueryId=20745). 24  A quantitative assessment of informal activities is, of course, extremely difficult. Some estimates (Istat, 2020) value the shadow economy in Italy at about 211 billion Euros—this is 11.9% of GDP, which rises to 19.4% of GDP in the South.

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exchanges, telephone conversations and Skype meetings, which continue today; of course, now in person, too. The quantity and quality of information also grew, extending beyond personal experience, as accounts, also visual, of neighbourhood life flocked in. Most local informants live in small apartments in overcrowded block of flats. Some have access to a balcony. Their experience exposes the political myth that the virus is “indiscriminate” or, as some politicians have dared say, “democratic”. Its spread and socio-economic (and political) consequences are neither. Examples of hardship abound. Luciano, a friend who in normal times runs a stall in Naples, said: How dare politicians say we’re all in this together when their ever-fatter wallets will get them through it all […] and we risk starving?! Market’s shut. I can’t work. The government isn’t helping. Savings are dwindling. My children and wife are barely coping. Nerves are frayed. The neighbourhood is dirtier than ever.

A few years ago, a young couple, Enzo and Rosa, established a small informal all-purpose shop that sells bar food 18 hours a day 7 days a week in their ground-floor dwelling home in a narrow back alley. During the pandemic, they could no longer operate the shop. Enzo suffered a pay cut in his formal job. Their savings soon ran out. Similarly hit, some of Enzo’s friends became improvised burglars, but Enzo refused to join them. So, the couple “survived”, they say “on handouts from our family”. An email that I received in the Spring of 2020 from another informant typified many others. It read: “We can only take care as best as we can, try to stay safe and hope for the best, you know. The reality is: A politician has a temperature? Test! Someone famous has a temperature? Test! One of us has a temperature? Call emergency and pray! My brother has all the symptoms of this virus. He has not been tested. One doctor talked to him on the ‘phone with no results. Yesterday I drove him to the hospital. Couldn’t get in. A sign on the door said ‘We are closed due to COVID-19’! Meanwhile, the government floods us with injunctions that contradict each other. What a deadly mess!”

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Things for Enzo and Rosa’s family worsened when Rosa’s 65-year-old father became infected with COVID-19. Their experience, amply reflected in media reports, is exemplary.25 Rosa said, As dad’s condition deteriorated, we called the emergency services. After a long wait on the ‘phone, we were told that an ambulance would soon arrive. Hours passed. We were frantic, as my dad’s breathing became ever more laboured. Finally, 4 hours after we first called, an ambulance showed up. It was dirty, and the two operators said that because dad was infected, we had to pay 250 Euros for him to be taken to the hospital. We all contributed what money we had but it wasn’t enough and had to borrow from neighbours. While waiting to be paid, the two operators became rude and offensive, saying that we must rush or they would leave.26

My Neapolitan friends followed the rules and stayed at home, venturing out only to buy food or for certifiable emergencies. Meanwhile, particularly in the less affluent areas, they had to watch from their windows illegal immigrants binging, fighting, drug pushing or freely scavenging objects from dumpsters in the streets. And they “had to stomach some élite and certain politicians transgressing lockdown rules” or promoting a “hug a Chinese” and “all will be well” rhetoric. Their reports also tally with the findings of investigative journalism (Lenzi, 2020) on the authoritarian trend that has long festered in Italian politics morphing into a sustained campaign, whereby the powers-that-be have used the virus to fuel people’s fear and then proceed to grab “extraordinary powers”. This needs a brief explanation. At the time of writing (Autumn 2022) Italians have experienced a succession of unelected prime ministers and governments. Since the tangentopoli (kickback city; see Pardo, 2018) scandals, unelected PMs and their governments have been appointed on and off between 1993 and 2001 and, uninterruptedly, since 2011. These people were appointed through a procedure that may be just about constitutionally correct, therefore legal, but has made ordinary Italians feel that they have no say in the matter of who rules them, that they are subjects of a barely disguised authoritarianism that engenders unfairly punitive policies. Although this breach of the 25   See, for instance, https://www.liberoquotidiano.it/news/spettacoli/televisione/ 26193861/striscia-la-notizia-scandalo-ambulanze-come-guadagnano-pelle-malati-covid. html and the results of police investigation (Dardari, 2021). 26  This is a recurring inefficiency, in many cases, leading people to hijack ambulances.

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democratic covenant between rulers and the ruled is clearly gangrenous for associated life, it has been peddled by the powers-that-be as “unavoidable” and, progressively, “normal”, especially because these arbitrary appointees may well ride a deficit of legitimacy but they regularly enjoy the support of the majority of Parliament. Let me be specific, with reference to recent events. In March 2018, a general election returned a hung parliament. The turnout was 73%. Italians voted overwhelmingly (50% nationally, up to 75% in the South) for protest parties of the left and the right—respectively, the Five Star Movement (M5S) and the League, shallowly some say, conveniently—labelled populist. The following May, the two parties formed a coalition government led by an obscure lawyer, the unelected Giuseppe Conte. In August 2019, that government fell. In September, a new government headed, again, by Conte included two ex-archenemies, the M5S and the Democratic Party (PD), which had resoundingly lost the election. This second, left-wing “Conte government” stayed in power until February 2021, grossly mismanaging the pandemic, the economy and the vaccination campaign, which resulted in thousands of deaths. Widely seen as incompetent, in March 2021 it was replaced by a broad-coalition government led by yet another unelected individual, tough of a totally different calibre. Prato’s fine analysis (2019) of ribaltone (turnaround) has brought out the theoretical import of these marriages of convenience and volte-face, which may well be common practice in Italian politics but are despised by ordinary Italians as “sleights of hand”. Eventually, on 25 September 2022, a general election took place. A PM was elected to power by a clear majority. Resonating with their counterparts’ anger in Europe and across the Atlantic, during the pandemic my informants resented the complacency and arrogance of their rulers, who, while tens of thousands died across Italy, peddled their questionable policies through numerous late-night broadcasts on national television. “Those propaganda stunts”, my friends say, “imposed a thicket of limitations on individual freedoms”, which, usually incomprehensible and often at the very limits of the law, were received as illegitimate at the grassroots level. Informants from diverse walks of life collectively described those governmental decrees (legislation that is passed without parliamentary approval) as “tyrannical”, “illogical”, “contradictory”, “ambiguous”, ranging from allowing people to drive in “exceptional circumstances” a car with one passenger sitting in the back and both driver and passenger wearing face masks to forcing people to

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carry self-declaration forms that changed almost daily and were often in contradiction with each other; from closing public parks (very few urban dwellers have private gardens) to keeping tobacconists open (Italy taxes heavily tobacco products); from keeping schools shut to tolerating mass street-parties and overcrowded public transport; from ending social distancing in trains to reinstating it the next day; and so on. We now know that the “second Conte government” went to great lengths to cover up their incompetence27 and keep secret the minutes of the decision-making meetings that document their bad decisions and chaotic actions (e.g., Bocci, 2020). These damning documents, now available to the public thanks to the dogged efforts of a young MP supported by a court ruling (TAR, 7 May 2021), make fascinating reading.28 Clarification on political and administrative responsibilities is obviously much needed. To widespread approval at the grassroots level, those policies are now under judicial investigation and are to be probed by a Parliamentary Commission of Inquiry. Interestingly, a senator of the PD recently argued on national television that evidence of the government’s bungling of the vaccination campaign should not be broadcast because it would damage her Party in government (Magro, 2021); a government that for many informants inexplicably peddles a pro-EU rhetoric, despite humiliation from EU’s indifference to Italy’s cry for help during the hecatomb of March and April 2020 (Boffey et  al., 2020) and mounting evidence that, like in past crises (Krugman, 2021), the EU’s bureaucratic and intellectual rigidity has made this crisis far worse than it should have been. These themes resonate among my friends in the media, who resent what they call “rampant de facto censorship”. One of them said: Why if I report on the English or South African strains no one objects, but when I reported that it originated in China, I was called a racist? Now, under the new US administration, we learn that the previous one was probably right in claiming that this virus was manufactured in a Wuhan lab that works on bioweapons, one in which Western powers have put lots of money and brainpower and have allegedly made great efforts to nip all suspicion of 27  Some say negligence and express no surprise that Conte and 6 Cabinet Ministers are under criminal investigation for mishandling the crisis (il Sole 24Ore, 2020). 28  See https://www.salute.gov.it/portale/documentazione/p6_2_2_1.jsp?lingua=italiano &id=3070. For a summary, see https://www.liberoquotidiano.it/news/politica/27546724/ roberto-speranza-verbali-segreti-nessun-rischio-covid-pensiamo-made-in-china.html

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wrongdoing in the bud. The questions whether this ugly virus was manufactured and whether it was released on purpose or by mistake need to be answered.29

No wonder that this, and the corresponding Parliamentary complacency (some say, complicity), should strengthen my informants’ contempt for what they see as their rulers’ incompetence, arrogance and abuse of power. This combination, they stress, was long-standing but has been exacerbated by the current crisis, now made worse by the Russian invasion of Ukraine, by the economic consequences of the ensuing war.

A Blunt Note When asked what he thought of today’s Naples, administered for over a year by a new mayor,30 Lino bluntly said “same old, same old”. Lino’s remark, and the sarcastic expression on his face when he made it, typifies the view of his peers, of the many professionals with whom I have spoken and of local commentators. For ordinary Neapolitans like Lino, who experience in their daily lives the triple whammy that I have discussed, the pandemic has powerfully evidenced the structural inequality that mars their society. We have seen that the self-employed, the precarious employees of small businesses and those who work informally—here, historically, the majority—bear the burden of the economic fallout of the pandemic and its impact on their health and lives. For too many this new whammy of increased unemployment and poverty adds, in many cases lethally, to those embodied by the sneaky privatization of the public health service that forces people to pay for their care and by the combination of an entrenched structural inequality with the equally entrenched misgovernance of public space and services. We have studied the damage done to public safety and health by bad legislation, misgovernance, dishonest officials and unscrupulous medical practitioners who pursue greed at the expense of ordinary people and of the large majority of honest and dedicated doctors and nurses. It bears 29  This brings to mind a World Health Organization’s clumsy attempt at political correctness: the reader may recall that, having earned discredit for the politicized way it handled the pandemic, it has recently engaged in verbal casuistry, assigning to COVID-19 variants Greek letters, as opposed to the names of the countries where they were first detected. 30  This man was elected mayor in 2021 with a clear majority. He was supported by the PD and the M5S.

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emphasizing a point of worldwide significance raised by Giuliana B. Prato (2020: 10): this damage has been made worse by the “techno-medical despotism” of the Italian government, justified in the name of the “common good”, but in fact resulting in the suppression of political legitimacy and civic freedoms. Naples is a frightening city where everyday life is fraught with danger. Here, the ordinary man, woman and child must do more that contend with a failing health service and the consequences of ideologically biased policies. They must deal, too, with other, ramified consequences of bad governance. They must dodge vermin and rubbish strewn across their city; they must deal with the ever-present risk to life and limb posed by badly maintained public property; they must contend with inefficient and ever-­ shrinking services; they must suffer the consequences of unchecked, omnipresent crime. In short, in today’s Europe, Naples makes a test case for the social and political consequences of the corruption of the best. As this worst kind of moral and criminal corruption breaches the democratic contract with citizenship and affects people where it hurts most, the legitimacy of the “system” comes heavily under question, as do trust and, ultimately, authority. The pandemic has brought to a head this long-festering problem. To this writer it seems indisputable that, however “inconvenient” it may be for them, those responsible for key aspects of governance, such as public health and safety, badly need to become truly accountable and perform responsibly, resisting greed and ideological prejudice.

References Arendt, H. (1951). The Origins of Totalitarianism. Harcourt. Arnold, J. (2023). The Poverty of Opportunity: Where Are We Going; Where Have We Been. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 8. Palgrave Macmillan. Bailey, F. (1969). Stratagems and Spoils. Basil Blackwell. Banca d’Italia. (2020). Economie regionali: L’economia della Campania. Banca dItalia. Beccarello, M., & Di Foggia, G. (2017). Il servizio di gestione della raccolta e smaltimento dei rifiuti urbani in Italia: valutazioni di efficienza e proposte di regolamentazione. University Bicocca. Bechis, F. (2021). Covid, i dati sui vaccinati a sbafo: un milione di furbetti del vaccino, Il Tempo, 26 March.

3  MISGOVERNANCE KILLS: ITALIAN EVIDENCE 

67

Beccaloni, E., Fazzo, L., De Santis, M., Iavarone, I., Scaini, F., Manno, V., & Minelli, G. (Eds.). (2020). Studio aull’impatto sanitario degli smaltimenti controllati ed abusivi di rifiuti nei 38 Comuni del Circondario della Procura della Repubblica di Napoli Nord. December. Istituto Superiore di Sanità. Beneduce, T. (2020). Emergenza rifiuti, gli assessori Bonavitacola e Del Giudice indagati per omissione d’atti d’ufficio. Corriere del Mezzogiorno, 5 February. Beneduce, T. (2021a). Terra dei Fuochi, aumentati tumori e malformazioni congenite dove c’è maggiore presenza di rifiuti. Corriere del Mezzogiorno, 10 February; https://corrieredelmezzogiorno.corriere.it/napoli/cronaca/21_ febbraio_10/terra-­f uochi-­a umentati-­t umori-­m alformazioni-­c ongenite-­ e123c572-­6ba6-­11eb-­948d-­b5da0a1f1ba6.shtml Beneduce, T. (2021b). Napoli, appalti e camorra: le buste dei bandi del Cardarelli manomesse di notte. Così vinceva il clan. Corriere del Mezzogiorno, 23 October. Bocci, M. (2020). Coronavirus, è battaglia sul segreto sui verbali degli esperti. la Repubblica, 30 July. Boffey, D., Schoen, C., Stockton, B., & Margottini, L. (2020). Revealed: Italy’s Call for Urgent Help was Ignored as Coronavirus Swept Through Europe. The Guardian, 15 July. Björklund Larsen, L. (2010). Illegal yet Licit: Justifying Informal Purchases of Work in Contemporary Sweden (p. 2). Stockholm Studies in Social Anthropology N.S. Channa, M. S. (2023). Negotiating Power over Human Bodies: Populism, People and the Politics of Health in Delhi. In I.  Pardo & G.  B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 7. Palgrave Macmillan. Charron, N., Lapuente, V., & Bauhr, M. (2021). Sub-national Quality of Government in EU Member States: Presenting the 2021 European Quality of Government Index and its relationship with Covid-19 indicators. University of Gothenburg. Colesanti, G. T., & Marino, S. (2016). L’economia dell’assistenza a Napoli nel tardo medioevo. Reti Medievali Rivista, 17(1), 309–344. Costituzione della Repubblica Italiana. (1947). Gazzetta Ufficiale n. 298, 27 December. Rome. Dardari. V. (2021). Ambulanze sotto gli standards di sicurezza e igiene. Il Giornale, 10 June. Di Biase, G. (2021). Napoli, la beffa della tassa rifiuti: zero incassi ma va pagata, è rivolta. Il Mattino, 24 February. Euronews. (2015). Italy discovers biggest illegal waste dump in Europe. Euronews, 16 June. Euronews. (2020). Baskets of solidarity lowered from Naples balconies amid coronavirus chaos. Euronews, 2 April. Folle, A. (2020). Porta Nolana tra mercatini della monnezza e falò: a Napoli il coprifuoco non esiste. Il Mattino, 4 December.

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I. PARDO

Folle, A. (2022). Napoli, la rabbia dei residenti di piazza Garibaldi dopo la visita di Draghi: ‘Pulizie di facciata, qui degrado di sempre’. Il Mattino, 30 March. Fondazione Gimbe. (2019). Il Definanziamento 2010–2019 del Servizio Sanitario Nazionale. Report Osservatorio Gimbe n. 7/2019. Geremicca, F. (2022). Napoli allo stremo tra rifiuti, topi e trasporti in tilt. Corriere del Mezzogiorno, 5 June. Giuffrida, A. (2020a). Italian MPs received coronavirus relief payments meant for self-employed. The Guardian, 10 August. Giuffrida, A. (2020b). WHO accused of conspiring with Italy to remove damning Covid report. The Guardian, 11 December. Il Mattino. (2019). Giovane donna cade su marciapiede rotto a Napoli: intervento e addio alle nozze. 31 October; https://www.ilmattino.it/napoli/cronaca/ donna_cade_marciapiede_sconnesso_napoli_addio_nozze-­4832766.html Il Sole 24Ore. (2020). Avviso di garanzia a Conte e 6 ministri, 13 August 2020; https://www.ilsole24ore.com/art/avviso-­g aranzia-­c onte-­e -­s ei-­m inistri-­ denunce-­gestione-­emergenza-­covid-­AD7isIj?refresh_ce=1 ISTAT. (2020). Annual Report: L’economia non Osservata. Istituto Nazionale di Statistica. ISTAT. (2022). Occupati e disoccupati (dati provvisori), giugno. Istituto Nazionale di Statistica. Kayaalp Jurich, E. (2023). Covid-19 Pandemic, Hydroxychloroquine and Healthcare System in Turkey. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 6. Palgrave Macmillan. Koenig, D., & Diarra, T. (2023). The Fragility of Legitimacy: Access to Health Care in Manantali, Mali. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 4. Palgrave Macmillan. Krugman, P. (2021). Vaccines: A Very European Disaster. The New  York Times, 18 March. La Repubblica Napoli. (2019). Napoli, Tragedia in via Duomo: Si stacca un Cornicione dal Quinto Piano. Morto un Commerciante, 8 June. Lenzi, M. (2020). Shining Italia: La libertà contro la paura. Alberti Editore. Magro, A. (2021). Non dovete far vedere i poveri in tv! La democrazia autoritaria di Monica Cirinnà. Il Tempo, 22 May. Maraniello, C. (2020). Tagli negli investimenti: ecco come il nostro sistema sanitario è caduto in ginocchio, soprattutto al Sud. OSSnews24, 3 April; https:// ossnews24.it/tagli-­negli-­investimenti-­ecco-­come-­il-­nostro-­sistema-­sanitario-­e-­ caduto-­in-­ginocchio-­soprattutto-­al-­sud/29053 Marshall, T.  H. (1950). Citizenship and social class and other essays. Cambridge University Press. Mautone, E., & Pappalardo, A. (2020). Asl Napoli commissariata, la decisione al Viminale. Il Mattino, 31 May.

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Miller, A., D’Amato, A., D’Avino, & A., Fragliasso, N. (1994). Procedimento relativo ad illeciti penali commessi nella gestione dell’USL 41 tra il 1984 e il 1994. Tribunale di Napoli, ms. NapoliToday. (2022). Crollo Galleria, cinque condanne per la morte di Salvatore Giordano, 19 September. Olson, E. (2023). Health Sovereignty in West-Central Mexico: Legitimacy from the Grassroots. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 15. Palgrave Macmillan. Pardo, I. (1996). Managing Existence in Naples: Morality, Action and Structure. Cambridge University Press. Pardo, I. (2000). Morals of Legitimacy: Between Agency and the System. In I.  Pardo (Ed.), Morals of Legitimacy: Between Agency and System. Berghahn Books. Pardo, I. (2004). Where It Hurts: An Italian Case of Graded and Stratified Corruption. In I. Pardo (Ed.), Between Morality and the Law. Routledge. Pardo, I. (2011). Italian Rubbish: Elemental Issues of Citizenship and Governance. In I. Pardo & G. B. Prato (Eds.), Citizenship and the Legitimacy of Governance. Routledge. Pardo, I. (2017). Between Stereotype and Bad Governance: An Italian Ethnography. In I.  Pardo & G.  B. Prato (Eds.), The Palgrave Handbook of Urban Ethnography. Palgrave Macmillan. Pardo, I. (2018). Corrupt, Abusive, and Legal: Italian Breaches of the Democratic Contract. Current Anthropology, 59(Suppl. 18), 60–71. Pardo, I. (2019). Governance Without Legitimacy: An Italian Conundrum of Democracy. In I. Pardo & G. B. Prato (Eds.), Legitimacy: Ethnographic and Theoretical Insights. Palgrave Macmillan. Pardo, I., Prato, G. B. (Eds.). (2011). Citizenship and the Legitimacy of Governance: Anthropology in the Mediterranean Region. Routledge. Pardo, I. (2020). A Social Anthropologist in Lockdown. In G. B. Prato (ed.), City Life and Beyond in Times of Pandemic. Suppl. 4 to Vol. 10 of Urbanities-Journal of Urban Ethnography: 19-24. Pardo, I. (2021). Making Second-class Italians: A Progressive Fabrication and Entrenchment of Inequality. In I.  Pardo & G.  B. Prato (Eds.), Urban Inequalities: Ethnographically-informed Reflections. Palgrave Macmillan. Pardo, I., & Prato, G. B. (Eds.). (2019). Legitimacy: Ethnographic and Theoretical Insights. Palgrave Macmillan. Prato, G. B. (2019). On the Legitimacy of Democratic Representation: Two Case Studies from Europe. In I. Pardo & G. B. Prato (Eds.), Legitimacy: Ethnographic and Theoretical Insights. Palgrave Macmillan.

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Prato, G. B. (2020a). Covid-19, an Indiscriminate Hitter? A Message from the Chair of the IUAES Commission on Urban Anthropology. 26 March; https://www. academia.edu/43254133/Covid-­19_an_Indiscriminate_Hitter_A_Message_ from_the_Chair_of_the_IUAES_Commission_on_Urban_Anthropology Prato, G. B. (2020b). Introduction: Pandemic Emergency, Solidarity and Brutus Tactics. In G. B. Prato (ed.), City Life and Beyond in Times of Pandemic. Special Issue of Urbanities-Journal of Urban Ethnography, 10 (Suppl. 4): 3-13. Prato. G. B. (2022). Healthcare Ethics in Urban Europe: Between Charity and National Welfare. In I.  Pardo and G.  B. Prato (eds), Healthcare and Public Health: Questions of Legitimacy. Special Issue of Urbanities-Journal of Urban Ethnography, 12 (Suppl. 6): 8-15. Prato, G.  B. (2023). Health Inequalities and Ethics of Responsibility: A Comparative Ethnography. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 2. Palgrave Macmillan. Rama, S. (2021). Bribes, corruption and incompetence: one man’s death from COVID in an Indian hospital. LSE Covid-19 blog, 28 June. Ricolfi, L. (2021). La notte delle ninfee. Come si malgoverna un’epidemia. La nave di Teseo. Rondinelli, C., & Zanichelli, F. (2021). Principali risultati della quarta edizione dell’indagine straordinaria sulle famiglie italiane. Banca d’Italia. Rutherford, D. (2020). Funding Anthropological Research in the Age of COVID-19. In V.  Das and N.  Khan (eds), ‘Covid-19 and Student Focused Concerns: Threats and Possibilities’, American Ethnologist website, 1 May; https://americanethnologist.org/features/collections/covid-­1 9-­a nd-­ student-­focused-­concerns-­threats-­and-­possibilities/funding-­anthropological-­ research-­in-­the-­age-­of-­covid-­19 Sarfati, L. (2020). Signalling ‘Crisis’ in an Affective Manner: Government, Media and Public Cooperation during COVID-19 in South Korea. In G. B. Prato (ed.), City Life and Beyond in Times of Pandemic. Special Issue of Urbanities-Journal of Urban Ethnography, 10 (Suppl. 4): 76-79. Sarfati, L. (2023). The Biopolitics of Complementary Spiritual Healing in South Korea and Israel. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 10. Palgrave Macmillan. SVIMEZ. (2020). Rapporto SVIMEZ sull’economia del Mezzogiorno. Il Mulino. Vico, G. 1999 (1725). New Science. : Penguin Books (orig. La Scienza Nuova). Winfield, N. (2016). Italy confirms higher cancer, death rates from mob’s dumping of toxic waste. The Washington Post, 2 January. Whyte, W. F. (1943). Street Corner Society: The Social Structure of an Italian Slum. University of Chicago Press.

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Video Evidence — Examples On the Waste Crisis in Naples: http://www.tgcom24.mediaset.it/2018/video/a-­napoli-­torna-­l-­emergenza-­rifiuti_3066739.shtml; also https://www.youtube. com/watch?v=Vnt57DLjpx4 On the Waste Crisis in Rome: https://www.youtube.com/watch?v=IcF364epHIE On the Waste Crisis in Milan: https://video.corriere.it/emergenza-­rifiuti-­ cassonetti-­pieni-­rifiuti-­strada/197fd3b2-­155b-­11e7-­9957-­bbceb60275cc On Rubbish Peddlers in Naples: https://www.blitzquotidiano.it/video/ napoli-­r issa-­r esidenti-­e -­i mmigrati-­c he-­v endono-­o ggetti-­r ecuperati-­d a-­ spazzatura-­video-­2030986/ On Poisonous Waste-dumping: Sick Children Die https://www.youtube.com/ watch?v=Aqf-­UFZYsgk; Some action is Belatedly Taken: https://www.youtube.com/watch?v=MY6261aid0A

CHAPTER 4

The Fragility of Legitimacy: Access to Health Care in Manantali, Mali Dolores Koenig and Tiéman Diarra

At independence in 1960, Mali’s new government wanted to make health care available to all, but poverty and lack of resources prevented it from realizing its ideals. Thus, Mali’s health care system faced a growing crisis of legitimacy through the 1980s. When international financial institutions required privatization in the 1980s, Malian policy makers saw an opportunity to introduce innovations in community health care that would create more legitimacy. Some of them became the foundation of today’s national health care system. This chapter evaluates the extent to which these innovations have created greater legitimacy. It also considers their sustainability, as legitimacy is never a given, but must be continually earned. Data from the area around Manantali, in western Mali, suggest that the legitimacy accorded to health care institutions remains fragile.

D. Koenig (*) American University, Washington, DC, USA e-mail: [email protected] T. Diarra Point Sud, Centre for Research on Local Knowledge, Bamako, Mali © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 I. Pardo, G. Prato (eds.), The Legitimacy of Healthcare and Public Health, Palgrave Studies in Urban Anthropology, https://doi.org/10.1007/978-3-031-25592-2_4

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This chapter first discusses legitimacy and the ways it is understood. The next sections discuss the early post-independence health care system in Mali and the innovations introduced in light of structural adjustment. Then, the chapter turns to the example of Manantali, Mali, addressing its particularities as a resettlement area, the development of new health institutions, and aspects of the system’s legitimacy. In conclusion, the chapter addresses the conditions that affect legitimacy in health care in western Mali.

Legitimacy in Health Care Legitimacy is never a given; it is always conditional and susceptible to challenge (Connelly, 2011, p.  932), as citizens constantly assess the actions and motivations of those in power (Pardo & Prato, 2019, p. 11). Although much work on legitimacy has focused on governments, the issues behind the legitimacy of health care institutions are similar. Often, these institutions are government institutions. Private and not-for-profit health institutions usually function under government certification. Legitimacy is a negotiated relation between people, the governing and governed, or, here, between service providers and their clientele. Those in authority must be believed; people will find actions legitimate if they believe in the rightfulness of the authority. This is normative legitimacy (Karateke, 2005). There is also a “supply-side” to legitimacy (Wenner, 2020, p. 270); the provider must deliver tangible results that live up to public expectations and deliver adequate and equitably distributed benefits (Connelly, 2011, p. 932). Studies of small-scale medical and health businesses in competitive markets repeatedly show that they build and maintain clientele by offering goods and services that meet local expectations for care and value (Cross & MacGregor, 2020, p. 1597). This reflects what Karateke (2005, p. 34) refers to as factual legitimacy and the OECD (2010, p. 23) calls performance legitimacy. The provision of welfare and social services is an important aspect of creating performance legitimacy. In addition, there is process legitimacy, adherence to agreed rules of procedure for acceptable action (OECD, 2010, p. 23). The personal credibility of officials and their public accountability build legitimacy (Pardo & Prato, 2019, p. 11). Alternatively, power can be undermined by failure to engage fully in the demands of responsible authority (Pardo, 2000, p. 7). Faulty process can include both downright dishonesty and neglect of duty

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(Pardo, 2000, p. 5). Social service organizations need to show visibly that they are responsible to the community (Connelly, 2011, p.  939). The empathy shown by medical practitioners is often an important element of care (Lê, 2013). These three issues are important in understanding the legitimacy of medical institutions. First, are they based on a system of knowledge that generates believable action (normative legitimacy)? Second, do they deliver care that sufficiently addresses health problems (performance legitimacy)? Third, do they do so in a way that appears fair and caring (process legitimacy)?

Mali’s Health Care System Legitimacy in the Early Years of Independence When Mali achieved independence in 1960 under a socialist government, the country’s aim was to provide free health care to all its citizens. All physicians and many other medical personnel were employed by the state in the public sector; private practice was not legal. For the first ten years, this strategy worked, in part because Mali benefited from international assistance and provision of medicines (Mariko, 1993, p. 247), but afterward, the state could no longer meet the system’s financial needs. From 1968 through 1980, health expenditures provided a declining part of the national budget (Coulibaly & Diarra, 1993, p. 241). Decreased financing meant that Mali was unable to maintain all levels of its pyramidal health system. This included the Ministry of Health, research and educational institutes, specialized services, and national hospitals in the capital Bamako, as well as regional health directors and hospitals in the regional capitals.1 In the prefectures, the main divisions of the regions were health centres with small hospitals and surgeries, which Coulibaly and Diarra (1993, p. 233) considered the lowest level of a real medical presence. Prefectures were divided into arrondissements, which had dispensaries, usually run by nurses, often not well-educated. Some arrondissements also had maternities, and some villages had a village health team of a hygienist and junior midwife. The government was not able to staff this complex system with sufficient equipment and qualified personnel. From 1983 to 1987, national 1

 Mali’s regions are the equivalent of other countries’ states or provinces.

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hospitals and the central administration received 45–57% of investments in health, and the regions 38%, leaving a quarter or less for the arrondissements and villages (Coulibaly & Diarra, 1993, p. 238). Medical personnel were also concentrated in the capital, which had 10% of the population, but 42% of doctors, 40% of nurses, and more than half of the midwives (Coulibaly & Diarra, 1993, p. 234). The price of medicines, the main expenditure by Malian households on health (Coulibaly & Diarra, 1993, p.  239), was also problematic. Until 1991, the Pharmacie Populaire du Mali (Mali’s People’s Pharmacy) had a monopoly on the import and distribution of pharmaceuticals; they often bought from distributors without requiring competitive bids and avoided generic medications in favour of brand name drugs. Thus, Mali’s population, one of the poorest in the world in the 1980s, paid double what people paid for medications in France (Diakité et  al., 1993, p.  167). Doctors routinely prescribed multiple medicines. Some pharmacies would not fill a prescription unless the patient bought everything (Mariko, 1993, p.  255), while elsewhere, patient and pharmacist consulted to find an option the patient could afford, not always the most effective (Diakité et al., 1993, p. 167). Health care in rural areas was often very poor. Most small towns and rural health centres lacked personnel, equipment, and drugs. The number of medical personnel was low and their quality left much to be desired. Documentation and record-keeping were poor. Rural residents responded by avoiding rural health centres; many turned to available traditional medicine. Some analysts (e.g. Tinta, 1993) pointed to the disjuncture between the health beliefs held by rural populations and the understandings and actions of modern medical actors, raising the question of the normative legitimacy of biomedical care. However, analysts were also clear that health centres in rural areas often lacked the basic necessities for good care. Malians of all social classes throughout the country mixed and still mix modern and traditional medicine. Although some individuals may reject one domain or the other, the normative legitimacy of both sorts of medicine is generally accepted, in contrast to other places (e.g. Sarfati, 2023; Olson, 2023). More problematic was process legitimacy. In this context, medical personnel often indulged in dishonest and sometimes harmful behaviour along the lines described by Pardo (2004, 2023) and Prato (2023). Coulibaly and Diarra (1993, p. 234) noted corruption, theft, and other illegal practices. Agents often asked for money for care that should have

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been free or charged for extras beyond posted fees (Tinta, 1993, p. 223). Physicians and other health professionals, universally employed by the state, also illegitimately saw private patients. In 1986, patients spent an estimated US $1.597 million on private clandestine medicine (Coulibaly & Diarra, 1993, p.  243). Tinta (1993, p.  244) recounted an elaborate story about a man who was informed that a hospital lacked serum for a sick child as well as equipment to administer it. He was convinced to buy the serum at a pharmacy and have it administered at home. He later discovered that this was a ploy to get extra money. Due to lack of funds and process legitimacy, performance legitimacy was problematic. Patients moved among different types of care, searching for what might work. They tried to treat themselves and went to modern medical practitioners, traditional practitioners, and people without qualifications. Sometimes, labourers, security guards, or cooks, who worked in health institutions, offered counsel to friends and neighbours (Diakité et al., 1993, p. 161). Patients evaluated different types of health care based on what worked, not by formal disease etiologies (Diarra, 1993). The Malian health system in the early and mid-1980s had little legitimacy in the eyes of its citizens. It had some normative legitimacy but lacked both performance and process legitimacy. Structural Adjustment and Innovation in Health Care People working in Malian health policy knew that they had problems with legitimacy and sustainability. By the 1980s, they were pushed by structural adjustment towards the disengagement of the state from health services. Private medical practice was legalized in 1983, although the system did not change quickly. By 1988, there were only a few private doctors and high-level nurses and midwives, mostly in Bamako. Even in 1992, only six physicians had private practices in rural areas (Coulibaly & Diarra, 1993, p.  243). In 1991, the monopoly on importation and distribution was taken away from the Pharmacie Populaire du Mali. Soon, there were 70 private pharmacies. State disengagement initially led to further degradation of health services, so policy makers began to look at other options, including cost recovery, health insurance, mutual insurance associations, and the use of generic drugs (Coulibaly & Diarra, 1993, p. 240). Mali’s health care system has changed significantly since the early 1990s in an effort to improve care. This chapter focuses on the foundation of the health care pyramid, the Centre de Santé Communautaire (CSCOM,

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Community Health Centre), which provides primary health care in rural areas and urban neighbourhoods. The idea was first piloted in Bankoni, a spontaneous neighbourhood in Mali’s capital as an experiment that involved Tiéman Diarra as implementor and researcher. The first CSCOM was opened there in March 1989 (Diarra, 2012). The goal was to create a centre financed by its users; in other words, what people paid for care should cover the major CSCOM operating costs, including salaries. The successful pilot grew into an organized system. By 2001, there were 350 CSCOMs (Balique et  al., 2001); by 2011, there were 1086 (Mali, 2014, p. 20). The establishment of a CSCOM starts from “below” by the creation of an Association de Santé Communautaire (ASACO, Community Health Association). The ASACO, a private association of inhabitants from a single geographic area (urban neighbourhood or group of rural villages), launches and then manages the CSCOM. The ASACO and the CSCOM are legally private non-profit institutions, but they are under national government supervision, which verifies four essential conditions: ASACO respect for democratic rules, legitimacy of the CSCOM director’s authority and decisions, not-for-profit status, and accounting transparency (Balique et al., 2001, pp. 38–9). As private institutions, ASACOs can hire personnel, have bank accounts, and contract with organizations (e.g. NGOs or government agencies carrying out health programmes). As non-­ profit institutions, they are exempt from taxes. As more communities wanted CSCOMs, the government established rules for their creation as an integral part of the national health system. A signed convention of mutual assistance between the government and the ASACO-CSCOM jointly establishes the roles and obligations of the partners. Government funding helps to equip new CSCOMs and aids in recruiting personnel. The state will provide 90% of construction and equipment costs, as well as a start-up fund of 1–2 million FCFA2 (US $2050–4100 in 2005) for medicines to stock the drug depot (Konaté & Kanté, 2005, p.  143). Some CSCOMs also get assistance from NGO programmes. By conferring transparency on CSCOM operations, the community-­ run ASACO became a key guarantee of process legitimacy. Nonetheless, process legitimacy could be compromised by organizational difficulties. In some areas, the lines of authority between the ASACO president and the 2  Mali’s currency is the CFA franc (FCFA), shared by countries in the West African Economic and Monetary Union.

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CSCOM medical director were not clearly demarcated, and the ASACO intervened in areas of the director’s competence (Balique et  al., 2001, p. 42). Coulibaly et al. (2020, p. 12) found that low-performing CSCOMs often showed conflictual interactions with the ASACO.  Many ASACOs were not democratic; they did not represent people in the area, and general assemblies were not held regularly. Sometimes ASACOs were not transparent about accounts, or their management was in the hands of an oligarchy (Balique et al., 2001, pp. 35, 42). Thus, process legitimacy is not a given. In contrast, Coulibaly et al. (2020, p. 3) found that the highest performing CSCOMs often were characterized by positive involvement of community leaders and the ASACO in their activities, greater community mobilization, and greater democratic density. They also underlined the importance of dynamic health care personnel and strong leadership by the CSCOM medical director. Moreover, questions remain about the performance legitimacy of the CSCOMs, which typically include a dispensary, a maternity/birth centre, and a drug depot to provide basic generic drugs for common ailments. Care is directed by a physician or a nurse and is open to all. By law, a CSCOM must create a list of its activities and their costs, which must be priced affordably. The list should include curative and preventive care, as well as promotional activities to encourage people to use the CSCOM and to undertake better health practices. The basic barrier to adequate performance is insufficient income, which leads to the continued financial fragility of many CSCOMs (Konaté & Kanté, 2005, p. 137).3 Thus they focus on curative care and sales of medications, which bring in more money than prevention and promotional activities. Even then, the number of visits may not be enough to cover costs (Balique et al., 2001), although sometimes, the deficit is made up by drug sales (Konaté & Kanté, 2005, pp. 144–5). In the first ten years, some 60% of CSCOM income came from pharmaceutical sales (Balique et al., 2001, p. 40). Nevertheless, residents sometimes complained that the supply of essential medications was not stable (Konaté & Kanté, 2005, p. 143). When a project to introduce performance-based financing was put into place, one goal was to improve drug management by encouraging depot managers to check stock regularly to avoid shortages (Coulibaly et al., 2020, p. 11). 3  Konaté and Kanté (2005) noted that many private practices were financially fragile as well.

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Prevention activities have been less effective because income is often insufficient to pay for them and there may be little or no funding from elsewhere. For example, CSCOMs often received materials from the regional or central offices for national public health programmes, but no money to run them (Balique et al., 2001, p. 43). Konaté and Kanté (2005, p. 142) echoed this; in their study, most residents were unaware of health promotion activities, and none had participated in them. Moreover, preventive services didn’t reach enough people. Balique et al. (2001, p. 45) suggested that CSCOMs should be given formal contracts to participate in national public health initiatives, with payments depending on results. Although Mali had many CSCOMs by the early 2000s, Coulibaly et al. (2020, p. 2) characterized the typical CSCOM as having insufficient qualified personnel, low use of service, inadequate infrastructure and equipment, and poor performance. Konaté and Kanté (2005, p. 146) believed that poverty threatened the collective, preventive, and local development activities at the heart of the CSCOM. Indeed, Balique et al. (2001, p. 45) estimated that a rural CSCOM needed to serve an area of at least 10,000 inhabitants to be viable. They argued that centres should receive subsidies in areas of the country where this was not feasible due to low population densities. Although the performance legitimacy of CSCOMs is better than the previous health care system in rural areas, it remains fragile, due to the poverty of rural populations and a lack of government funding. Process legitimacy needs to be understood in terms of the CSCOM’s relationship to the larger health system. The CSCOMs, the vast majority of institutions, are only the base of the health care pyramid (Mali, 2014, p. 20). For advanced care, people usually moved into the public system, to Centres de Santé de Référence (CSREF, referral health centres); in 2014, there were approximately 60, mostly in prefectures (Mali, 2014, p. 20). More advanced care was found in public hospitals in the regional capitals. At the central level were five public hospitals, as well as research institutes for public health, blood transfusions, child survival, and sickle cell, among others (Mali, 2014, p. 19). Private options were also available, mostly in major cities. Although Coulibaly et al. (2020, p. 11) noted that there was little coordination among the different actors and institutions that provided public health, this was not an issue discussed much in our study. CSCOMs would routinely send patients to CSREFs for operations and other diseases they could not handle. Another aspect of process legitimacy was the relationship of CSCOMs to the new institution of democratic decentralization, the commune,

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established in the mid-1990s. Balique et  al. (2001, p.  41) referred to CSCOMs as “a tool of state decentralization” that would accompany and reinforce the territorial changes. They foresaw that each commune would have its own ASACO and CSCOM (Balique et al., 2001, p. 45). A few years later, Konaté and Kanté (2005, p.  143) noted that the ASACOs increasingly believed that decentralization was bringing health centres under the tutelage of the mayor and communal council; therefore, they argued, the communal council should support them in the search for NGOs or other donors. Moreover, communes should pay some of the operating costs. By 2016–2017, some local mayors had signed performance-­ based financing contracts with the CSCOMs (Coulibaly et al., 2020, p. 3). High-performing CSCOMs were also more likely to see the mayor work together with the CSCOM director and the ASACO president (Coulibaly et al., 2020, p. 12). The idea seems to be that decentralized governments may be able to address the economic fragility that affects CSCOM performance legitimacy by attracting outside funding or meeting costs from commune revenues.

Health Care in Manantali The Situation and Context Although Manantali4 is similar to many areas of rural Mali, it is different in one striking way (Fig.  4.1). It is the site of a high dam, built in the mid-­1980s, to provide electricity and improve irrigation and navigation to the countries of the OMVS (Organisation pour la Mise en Valeur du Fleuve Sénégal, Senegal River Basin Authority).5 The dam led to rapid change, including the construction of roads and new villages for the 8850 Bafing residents displaced from the reservoir, most of whom now live downstream of the dam. The dam galvanized the growth of Manantali town, a small rural service centre with about 10,000 inhabitants in 2016. The area was also affected by major national changes, not only structural adjustment but also democratization, political decentralization, and associated development initiatives since the early 1990s. With decentralization, the

 The term Manantali refers to the dam, the town, and the wider area.  At dam construction, the member states were Mali, Mauritania, and Senegal; since then, Guinea has joined the organization. 4 5

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Fig. 4.1  The Bafing: Manantali town, host and resettlement villages. (Source: Maya S. Kearney, using ArcGIS)

area created two communes, Bamafele and Diokeli, each with an elected council and mayor. The town of Manantali occupies an anomalous position. As part of the commune of Bamafele, it comprises approximately half its population, while the other half is dispersed among 22 villages. However, the land

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upon which the town is located is owned by the OMVS, which continues to support some of its infrastructure, including a health centre. Although the town is large and wealthier than the villages, the political centre is the commune office in Bamafele village. The information here comes from a study funded by the US National Science Foundation (BCS-1560543) in 2016–2019 to understand the effects of resettlement, with special attention to those displaced from the reservoir in the mid-1980s. The research team followed a sample of 137 households, 108 resettlers, and 29 hosts. In each, up to four members (older man, older woman, younger man, younger woman) were interviewed; not all households had people in each category. Older interviewees were asked how households responded to illness and what health centres the household used. Younger people were asked how they tended to their health and whether and where they sought modern health care. The personnel in Manantali’s health institutions were also interviewed. Before the resettlement in the mid-1980s, area health institutions suffered from the performance and process illegitimacy discussed above. The administrative centre of Bamafele had a “rudimentary” health post of four adobe houses, comprising dispensary, maternity, birth clinic, and pharmacy. It was staffed by a senior nurse and midwife (USAID, 1984 Annex 7.7, p. 10). There was virtually no equipment; rarely were drugs available, because Bamafele was remote and cut off from traffic during the several month-long rainy season. In interviews in 2016–2018, people mentioned having to walk up to three days before they could get to decent health facilities; some sick people died on the way. Others simply had to remain home and see if traditional medicines and their own immune system could combat the malady. Apart from Bamafele, the next health post was 50 km southeast. A government facility 100  km north in Bafoulabe prefecture was staffed by a doctor, nurse, and midwife, but it also suffered from a shortage of supplies and lack of maintenance. New Health Care Institutions Manantali now includes a variety of health institutions. CSCOMs, as in most of the country, provide most of the primary health care. Because of its connections to the OMVS, Manantali town, a small urban centre, has private institutions that function alongside the CSCOMs. Bamafele commune, in which Manantali town is located, has three CSCOMs and

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Diokeli, a more rural commune, has one. This section looks first at the Manantali private institutions, then at the CSCOMs. Manantali houses a clinic, several pharmacies, and other health practitioners. The key health institution is what residents called the Manantali “hospital.” In the early 1980s, the dam construction company built a ten-­ bed institution with laboratory, radiology unit, intensive care and surgical capacity, pharmacy, morgue, and two ambulances. There was lodging for one physician and three nurses. The hospital, next to the management housing area, was to provide care for the expatriate workforce and OMVS representatives during dam construction. A smaller dispensary was built in the worker housing area in 1985 to provide routine health care to about 1000 workers and their families. For more complicated health care, patients were sent to Bafoulabe. The construction project planned to turn these structures over to the Malian government in 1988 or when expatriates had departed (USAID, 1984, Annex 7, pp. 10–11). That turnover never happened. Interviewed in 2018, one of the two physicians, hired in 1988, said that the “hospital” was really a health centre or a clinic.6 In 1990, when the dam was finished and power plant construction began, the OMVS took over management of the clinic.7 In 1998, the international company contracted to build the power plant hired an expatriate physician, with whom the doctor worked until 2004–2005, when the power plant was built and lines were connected. Then the clinic was run by the company operating the dam. Thus, this clinic has remained under the control of the OMVS and its employees are staff. The dispensary in the worker’s area remains linked to the clinic. It has evolved into a primary health centre, with an emphasis on curative medicine, malnutrition treatment, prenatal, infant and children’s care, family planning, and routine vaccinations. Patients come not only from Manantali but also from surrounding villages. The dispensary refers complicated patients to the CSREF in Bafoulabe and transports them in the clinic’s ambulance. Unlike the villages, the town of Manantali has stable electricity, due to its proximity to the hydroelectric dam. It also has running water, with a  To differentiate it from the other health centres, we will call it a clinic.  The OMVS established an affiliate (SOGEM) to run all its works in Mali; SOGEM contracted with another affiliate (SEMAF) to run the power plant. Here we refer to the dam or OMVS, the directing organization. 6 7

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treated water supply. Thus, both health structures have electricity and running water. The clinic’s x-ray, room for oxygen treatment, four hospital rooms, and consultation rooms and offices for doctors and nurses remain in use. However, the laboratory and the operating room are no longer functional. The clinic treats workers at the dam, employees of the local administration and government services, and public-school staff. It is also open to villagers from surrounding villages and fisherfolk from the camps around the lake. Dam employees and their families, as well as government workers, are treated free of charge; others are expected to pay. However, according to the villagers (and our team’s experiences), simple consultations are free to all. A small private pharmacy is attached to the clinic. Prices are competitive, and villagers said that prices were often lower than in village CSCOMs. The clinic welcomes a large number of patients; in an illustrative month (October 2017), there were 1027 consultations, far higher than any of the village CSCOMs. Its personnel see an array of diseases: malaria, respiratory problems, and sexually transmitted diseases. Prenatal consultations are primarily at the dispensary. One advantage of the clinic is its three ambulances; the third was a gift to the Bafing population by the power company and is managed by a village team. Although evacuation by these ambulances must be paid, they bring patients not only to the CSREF in Bafoulabe but also take people to the public hospital or private clinics in the regional capital or to public or private institutions in Bamako. Other private health structures in Manantali include two pharmacies, at least one of which was created during dam construction. They sell to enterprises and businesses as well as to individuals. The pharmacist noted that many patients cannot afford to fill their entire prescription, so they buy some and return later to buy the rest. The pharmacy also faces intermittent ruptures in stock due to delivery problems. An entrepreneur opened a small health school in 2015. It trains auxiliary nurses in a six-month course followed by a three-month internship. Only 18 students had been trained by 2018; that year, there was a class of six, virtually all women. The main problem for students was the cost: 150,000 FCFA (US $275). Some younger women found that training conflicted with their household duties and left school. The school has placed some interns in the CSCOMs.

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The commune of Bamafele has three CSCOMs plus a small health post; these correspond to different geographical areas. The commune’s first CSCOM, in Bamafele village, is a new and improved version of the pre-­ resettlement health centre in Bamafele arrondissement. The resettlement project built a cement block structure with a corrugated metal roof. Mali’s Ministry of Health was to provide personnel, and the project was to equip them with standard items as well as a start-up supply of medications (USAID, 1984, pp.  12–3). As Mali’s rural health strategy changed, an ASACO was created, and the centre became a CSCOM in 1998. The Bamafele CSCOM, originally meant to cover the two Bafing communes, still is responsible for its entire commune, which includes upstream villages as well as those downstream on the right and left banks. The resettlement project also built a satellite health post in the village of Tondidji for those who resettled upstream. Coverage was to be provided by Bamafele health staff, who were to make regular visits there. In 2018, the post was staffed by a community health agent and an auxiliary nurse, who did not earn regular salaries. Bamafele CSCOM still supervised this post, but rarely visited, because it was a 115 km trip over a difficult road from Bamafele. Therefore, Tondidji was undertaking efforts to transform its health post into an independent CSCOM. The second CSCOM in Bamafele is in the village of Marena, on the left bank of the Bafing river. Until the mid-2000s, the road along the left bank was cut off during the rainy season, so it was difficult to get to the Bamafele CSCOM. People sometimes used small boats to make the short river crossing, but a pregnant woman trying to get to Bamafele drowned when a boat capsized. To avoid such occurrences, the people on the left bank created their own CSCOM in 2003. The coverage area for Marena is limited to the left-bank villages. However, since all health centres are open to anyone willing to pay their fees, these coverage areas provide only approximate boundaries. The CSCOMs also serve fisherfolk who live around the river and transhumant pastoralists who move through the area at regular times of the year. The third CSCOM in Bamafele commune, recently opened in 2021, is in the town of Manantali. Some Manantali residents decided to increase health care options by creating a CSCOM to serve the town and six nearby villages. They formed an ASACO in 2015 and approached the OMVS for a plot on which to build, which they received. They oversaw the construction of a building, built with assistance from a Canadian health project. At the time of the formal project interview in October 2017, the centre had

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not yet opened. The interior of the building was still to be finished; the ASACO was waiting for the government to name a medical director and midwife. A vaccinator and a pharmacy manager had been sent for training. The ASACO had great visions for this CSCOM. They hoped to give better service to pregnant women than did the existing dispensary. Given the availability of running water and electricity, they foresaw installing an operating room, x-ray, and ultrasound machine. Ultimately, they wanted their own ambulance and hearse. These were dreams far beyond the possibilities of the rural centres. Farther from Manantali town to the northwest, the more rural commune of Diokeli, with a population only slightly smaller than Bamafele, has only one CSCOM in the resettlement area, in the commune centre.8 This centre was established in 2006 to serve an area generally more rural than that of Bamafele. It faces problems of sustainability.

The Legitimacy of Manantali’s Health Institutions Normative Legitimacy Available health care options in Manantali included traditional and modern medicine, both with normative legitimacy. In general people appeared to believe that some diseases, especially mental illnesses, epilepsy, infertility, and diseases with supernatural causes, were best treated through traditional medicine. Other diseases were best treated by modern medicine, and some could be treated by either. Our sample included three traditional specialists; all claimed relatively successful practices. It also included a bonesetter and several midwives. No individual mentioned using traditional specialists in answer to the interview questions about the provision of family health care. However, other information indicated that several people in the sample had been treated by them for mental illness and impotence. By far, the most common use of traditional medicine was the home-­ based preparation of plants and leaves for teas or washing solutions. These medicines are based on gathered or cultivated plants; their preparation is 8  Diokeli commune does have another CSCOM, in Diakaba, a village some distance northwest (outside the area in Fig. 4.1). This village, an Islamic centre, is ethnically distinct from the Bafing resettlement villages. Its CSCOM was frequented by only two men in our sample, from a non-Bafing host village at the north of the resettlement area.

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widely known and based on local knowledge passed down for generations. In answer to our questions about sources of health care, a substantial minority of women, both older and younger, and some younger men said they used plant-based medicines exclusively. More commonly, all categories of individuals used both the traditional and modern health systems. Often, they tried traditional medicines first, but if they didn’t work, they turned to modern health care, especially the CSCOM. Like Malians since independence, people consistently accepted the normative legitimacy of different medical approaches. Performance Legitimacy Interviewees at Manantali suggested multiple criteria for performance legitimacy. First, competent medical care should be offered by physicians, midwives, or nurses. These medical personnel should be regularly present in the clinic. Second, facilities should be reasonably priced, and fees should not be excessive. Third, essential drugs should be available and affordable. Physicians should not prescribe long lists of drugs that render health care more costly. It was difficult to balance the desire for quality medical care and low fees, and people cited both as important for good performance. CSCOMs received subsidies from various sources to get underway and to keep centres in working order and maintain sound financial footing. The Bamafele CSCOM benefited by inheriting the buildings erected by the resettlement project. It also received funds from the central government, the prefecture, and the commune to transform into a CSCOM.  A European NGO and the Malian Red Cross provided some money for equipment and toilets. In 2009, after the CSCOM was electrified, it got a refrigerator and lights. The village of Marena and other right-bank villages benefitted from a sister-city relationship with a French town.9 The sister city provided funds to build both the CSCOM and a primary school. They were also assisted by funds from a German NGO, and civil servants from the area gave substantial funds for the construction. The commune’s mayor at that time was instrumental in helping the village get financing for a small water tower on one of the deep wells near the school and clinic to provide piped water. Another left-bank village received a small ambulance (fitted on the bed of a three-wheeled motorcycle) from the Malian Red 9  This information is from a short trip Koenig made to Manantali in 2004, soon after the CSCOM was installed.

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Cross because of its record in sending pregnant women to the health centre. Although based in that village, it serves all villages on the left bank. Finally, one village resident who works at the dam has taken responsibility for paying the salary of Marena’s junior midwife. Another relative who works at the dam provided funding for an electrical connection.10 Diokeli also received funds from a European NGO and the Red Cross; the mayor’s office provided some equipment and partial salaries. NGOs and external assistance rarely pay for operational costs. Despite this assistance, the CSCOMs found it difficult to pay all needed expenses. The Bamafele ASACO said they had difficulty in regularly paying the required salaries and the monthly electric bill. They were not always up to date on the payments for employee premiums for national health insurance. Diokeli also had problems in regularly paying their personnel. The Marena ASACO, with a smaller staff, said that they could generally pay the bills. They did say that they lacked money to make improvements, also a problem in Bamafele. Sometimes there were shortages of essential medications. The CSCOMs had long lists of things they needed for better performance: extra personnel for vaccinations, malnutrition counselling, and general cleaning and labour; housing for the medical team; renovations to old buildings and equipment; improvements to the water supply; incinerators for medical waste. Bamafele needed transport to visit the upstream villages more regularly. Although the majority of residents used modern medicine and the national health system, they had problems with its cost. Despite the fact that CSCOM fees are kept low, many people found it difficult to pay for consultations, treatment, and medications. Although many brought ill family members to the CSCOM, about a quarter of household heads said that it was not easy to pay. They borrowed money, called upon migrant family members, sold livestock, and used savings. Some also raised the cost of transport to health centres. Diokeli medical personnel noted that women came for prenatal counselling only when they had money to pay. Some respondents questioned the availability of personnel and medicines at the CSCOMs. A few also had questions about quality of care. Several called into question the capability of the physician at Diokeli; more commonly, people complained that he was often absent. A few also 10  Although the two commune centres got electricity relatively early on, the remaining villages only were electrified in 2018.

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complained about the absence of the physician at Marena. Several also said that appropriate medications were not always available at the CSCOMs. If people accepted the legitimacy of the system, they questioned the legitimacy of individual CSCOMs and other medical establishments. Often, they did not frequent the CSCOM in their commune or the closest one. They also did not go consistently to the same site for primary health care. For example, in the commune of Bamafele, which includes the OMVS facilities in Manantali, interviewees were almost as likely to use OMVS facilities as their CSCOM. Twelve heads and six older women said the household used the Bamafele CSCOM, while eight heads and seven older women said household members went to both Manantali and Bamafele. The pattern was similar in Marena, across the river. Nine heads and seven older women said the household primarily used Marena CSCOM, but twelve heads and eight older women said they used Manantali, usually along with Marena; a few used Manantali only. The upstream villages of Bamafele commune rarely used its CSCOM. Rather they used other closer CSCOMs upstream; if they needed more advanced care, they often went to the referral hospital in Kita, a neighbouring prefecture. In Diokeli, slightly less than half of heads and slightly more than half of older women used mainly the Diokeli CSCOM.  A significant minority went to Bamafele. Others used both Diokeli and Bamafele CSCOMs; more than half of them also sent people to Manantali. A few used Diokeli and Manantali only. The OMVS health services at Manantali seemed to serve as a kind of referral hospital for residents who used them. They often clarified that when something was complicated, they went directly to Manantali. People also believed that a physician would be more reliably present in Manantali, and several mentioned that its pharmacy was cheaper. With better transport, some Bafing residents went directly to regional hospitals or Bamako for care. In sum, residents continually evaluated the performance of individual clinics as well as the system as a whole. Clinics with better performance were more attractive to people who could get there. People with access to transport, either their own or hired, voted with their feet for medical care that they considered higher quality, more available, or less expensive. The very success of CSCOMs may create competition among them, especially if there are more CSCOMS than an area that can sustain economically. It is worth asking how the presence of a better-equipped CSCOM at Manantali, opened after these data were collected, will affect how people

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evaluate their options. If this centre offers good quality and low prices, it may attract patients from existing CSCOMs. Those that already have problems meeting costs may see their incomes further erode, making them more fragile. Growing success and consequent competition have already led to problems in non-health areas, such as middle schools and weekly markets. In 1993–1994, many villages in the Bafing had their own weekly markets. By 2018, improved transport had led to market consolidation, with fewer, but bigger and more diverse markets. Some village markets grew stagnant, and others disappeared. The number of primary and middle schools has grown since Mali implemented a policy of “a school for every village.” There are probably enough children to sustain primary schools (grades 1–6) in almost every village, but there are not enough students for the same number of middle schools (grades 7–9). So as new middle schools were built and staffed, some older schools lost students. By 2018, it was a question of whether some middle schools might close for lack of students. Since some patients choose to go to CSCOMs they consider “better,” it is not unrealistic to imagine future competition and consolidation. Process Legitimacy The process legitimacy of the Malian health system has improved since CSCOMs were put into place. We heard no complaints about corruption from the people that we interviewed (although they complained about it in other domains). Moreover, the process of moving people into higher tier care also seemed to go relatively smoothly. All the CSCOMs evacuated patients with serious diseases or who needed complicated treatment to the CSREF in Bafoulabe. Villages can subscribe to a solidarity fund based in Bafoulabe or pay individually for an ambulance. In some cases, the ambulance charge may be sent to the mayor and the relevant ASACO. Nonetheless, there were points of tension in managing CSCOMs. First, there were tensions between the ASACOs and the CSCOM technical personnel. Both ASACOs and CSCOM personnel were aware of the problems in performance discussed above, but they did not always agree on what should be done or who should do it. Medical directors were all somewhat critical of the ASACOs with whom they worked, feeling that the boards could be more active, and they could manage their financial resources better. They also wanted ASACOs to be more proactive in looking for “partners,” particularly NGOs who could help meet pressing

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financial needs. In turn, ASACOs struggled to manage with restricted budgets, linked to the CSCOM income. Some said they faced difficulty in paying required salaries and the monthly electric bill and were not always up to date on employee insurance. Indeed, the Diokeli commune paid half the physician’s salary to relieve pressure on the ASACO. In general, there was little money for improvements. ASACOs confirmed that there were sometimes shortages of essential medications. Second, the work of CSCOMs depends to some extent on unpaid staff, including interns, community health assistants for health promotion work, traditional birth attendants who delivered babies in the villages, and ASACO members themselves. These people worked either in their own interest or for the good of their communities. However, interviewees often mentioned that these workers would be more “motivated” if they had some kind of tangible reward. One mentioned an NGO programme that gave the community health assistants US $5–10/month. Many mentioned that traditional birth attendants needed further training and equipment. One ASACO member mentioned that he was personally responsible for sums of 2–3 million FCFA (US $3700–5500); he thought a token recognition of the responsibility would be nice. Unpaid workers present the possibility of requests for extra-legal payments and the erosion of existing process legitimacy. Despite the problems, patients generally trusted the CSCOMs. Many young women went for regular prenatal consultations; a significant number delivered their babies there. A few mentioned regular treatment for chronic diseases. This was a significant change from before the resettlement. Yet the basic foundation for performance legitimacy of the CSCOMs, a consistent level of quality care at a reasonable price, is not assured, because of economic fragility.

Conclusion As in much of Mali, CSCOMs have proved to be a great success in Manantali. Having a CSCOM not only means better health care, but the institution itself is evidence of a thriving collectivity, commune, or village. However, the CSCOM’s very success has planted the seeds for future questions about legitimacy. The fact that patients can choose among CSCOMs and other health care providers leads to implicit competition among them. As some CSCOMs can offer better services to attract more patients, less well-endowed CSCOMs in a more precarious position may

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find it difficult to sustain adequate levels of performance. Patients with sufficient resources to travel will be able to go to preferred CSCOMs, while poorer people must use what is available to them. This may be a speculative future for Manantali’s health institutions, but the data show that available, accessible, and affordable health care is still problematic, despite notable improvements in performance. People regularly raised problems about costs, especially the costs of medicines and the availability of good medical care. Arguably, none of the health institutions has a secure economic basis. The clinic and dispensary run by the dam have the strongest financial base, but their continuity depends on the willingness of the dam operator to subsidize them. Since the quality of health care in the area is still not high, it is likely that this perquisite will be preserved indefinitely to get and maintain good staff. None of the other health institutions, which depend on user fees coupled with unpredictable access to government and NGO funding, has a stable financial foundation. Process legitimacy may decrease if performance legitimacy cannot be sustained. The abuses and lack of process legitimacy documented in the 1980s were not discussed among the people we interviewed nor in the many discussions we had with individuals about health care. However, tensions between ASACOs and the CSCOMs they manage suggest that processes are not always smooth. The ASACOs often struggle to meet operating costs and find it even more difficult to maintain and upgrade equipment and locales. Because CSCOMs can get initial start-up funding, the viability of established CSCOMs may suffer as newer, better-equipped CSCOMs open. For example, the Diokeli CSCOM, already facing financial constraints and viewed as problematic by some patients, may lose clients. The establishment of CSCOMs has done much to increase both process and performance legitimacy in health care at Manantali, but legitimacy remains fragile. Since legitimacy is never permanent, the conditions underpinning it need to be constantly renewed. If policy makers want to ensure adequate health throughout the country, the government should consider offering greater support for universal basic health services. This is not an argument for a return to the earlier state monopoly over health care provision, which is simply not feasible in a poor country like Mali. But the government should consider grants for renewing equipment and structures and advanced training for personnel. It should target CSCOMs in poorer areas to maintain performance legitimacy. Any new programmes should be carefully structured with transparent conditions to avoid compromising process legitimacy.

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References Balique, H., Ouattara, O., & Ag Iknane, A. (2001). Dix ans d’expérience des centres de santé communautaire au Mali. Santé Publique, 13(1), 35–48. Connelly, S. (2011). Constructing Legitimacy in the New Community Governance. Urban Studies, 48(5), 929–946. Coulibaly, A., Gautier, L., Zitti, T., & Ridde, V. (2020, June 3). Implementing Performance-based Financing in Peripheral Health Centres in Mali: What Can We Learn From It? Health Research Policy and Systems, 18, 54. https://doi. org/10.1186/s12961-­020-­00566-­0 Coulibaly, S. O., & Diarra, K. (1993). Analyse des comptes nationaux de la santé. In J. Brunet-Jailly (Ed.), Se Soigner au Mali: Une contribution des sciences sociales. Douze expériences de terrain. Karthala and ORSTOM. Cross, J., & MacGregor, H. N. (2020). Knowledge, Legitimacy and Economic Practice in Informal Markets for Medicine: A Critical Review of Research. Social Science and Medicine, 71, 1593–1600. Diakité, B. D., Diarra, T., Traoré, S. (1993). Recours aux soins et consommation médicale dans le quartier de Bankoni. In J. Brunet-Jailly (Ed.), Se Soigner au Mali: Une contribution des sciences sociales. Douze expériences de terrain. Karthala and ORSTOM. Diarra, T. (1993). Représentations et itinéraires thérapeutiques dans le quartier de Bankoni. In J. Brunet-Jailly (Ed.), Se Soigner au Mali: Une contribution des sciences sociales. Douze expériences de terrain. Karthala and ORSTOM. Diarra, T. (2012). Santé, maladie et recours aux soins à Bamako (Mali): Les six esclaves du corps. L’Harmattan. Karateke, H. T. (2005). Legitimizing the Ottoman Sultanate: A Framework for Historical Analysis. In H. T. Karateke & M. Reinkowski (Eds.), Legitimizing the Order: The Ottoman Rhetoric of State Power. Brill. Konaté, M. K., & Kanté, B. (2005). Commercialization of Health Care in Mali: Community Health Centres, Fees for Service and the Rise of Private Providers. In M. Mackintosh & M. Koivusalo (Eds.), Commercialization of Health Care: Global and Local Dynamics and Policy Responses. Palgrave Macmillan. Lê, G. (2013). Trading Legitimacy: Everyday Corruption and Its Consequences for Medical Regulation in Southern Vietnam. Medical Anthropology Quarterly, 27(3), 453–470. Mali (Ministère de la Santé et de l’Hygiène Publique, Ministère du Travail et des Affaires Sociales et Humanitaires, and Ministère de la Promotion de la Femme, de la Famille et de l’Enfant). (2014). Plan décennal de développement sanitaire et social (PDDSS) (2014–2023). Government of Mali. Mariko, M. (1993). Deux expériences de recouvrement des coûts dans les services de santé. In J. Brunet-Jailly (Ed.), Se Soigner au Mali: Une contribution des sciences sociales. Douze expériences de terrain. Karthala and ORSTOM.

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OECD. (2010). The State’s Legitimacy in Fragile Situations: Unpacking Complexity. OECD. https://www.oecd-­ilibrary.org/development/the-­state-­s-­legitimacy-­ in-­fragile-­situations_9789264083882-­en Olson. E. (2023). Health Sovereignty in West-Central Mexico: Legitimacy from the Grassroots. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 11. Palgrave Macmillan. Pardo, I. (2000). Morals of Legitimacy: Interplay between Responsibility, Authority and Trust. In I. Pardo (Ed.), Morals of Legitimacy: Between Agency and System. Berghahn Books. Pardo, I. (2004). Where It Hurts: An Italian Case of Graded and Stratified Corruption. In I.  Pardo (Ed.), Between Morality and the Law: Corruption, Anthropology and Comparative Society. Routledge. Pardo, I. (2023). Misgovernance Kills: Italian Evidence. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 3. Palgrave Macmillan. Pardo, I., & Prato, G. B. (2019). Ethnographies of Legitimacy: Methodological and Theoretical Insights. In I. Pardo & G. B. Prato (Eds.), Legitimacy: Ethnographic and Theoretical Insights. Palgrave Macmillan. Prato, G.  B. (2023). Health Inequalities and Ethics of Responsibility: A Comparative Ethnography. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 2. Palgrave Macmillan. Sarfati, L. (2023). The Biopolitics of Complementary Spiritual Healing in South Korea and Israel. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 10. Palgrave Macmillan. Tinta, S. (1993). Les services de santé du cercle de Bandiagara. In J. Brunet-Jailly (Ed.), Se Soigner au Mali: Une contribution des sciences sociales. Douze expériences de terrain. Karthala and ORSTOM. USAID (US Agency for International Development). (1984). Project Paper: Mali, Manantali Resettlement. USAID. https://pdf.usaid.gov/pdf_docs/ PDBAU766.pdf Wenner, M. (2020). Trajectories of Hybrid Governance: Legitimacy, Order and Leadership in India. Development and Change, 52(2), 265–288.

CHAPTER 5

“I Chose This ‘Other Way’”: An Ethnographic Approach to Medical Pluralism Within the Context of Greek Cancer Care Falia Varelaki

Introduction1 In contemporary Western societies, health and illness are considered to be purely biological categories, a perception that dates back to the time of the Enlightenment when the dominance of medical discourse was the only valid discourse that was based on the application of reason and 1  The research on which this chapter is based was funded by the University of the Aegean via a  Ypatia Scholarship. I  would like to  thank the  editors of  this volume Italo Pardo and  Giuliana Prato who kindly invited me to  participate in  the  Workshop as  well as  all the participants for their suggestions and comments which improved my paper. My gratitude is also to my friend and colleague Dr Savvas Triantafyllidis for his insightful comments.

F. Varelaki (*) University of the Aegean, Mytilene, Greece e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 I. Pardo, G. Prato (eds.), The Legitimacy of Healthcare and Public Health, Palgrave Studies in Urban Anthropology, https://doi.org/10.1007/978-3-031-25592-2_5

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observation, thus, the only able to understand and manage the disease. The structured relationship between the patient and the doctor that has been formed in this context since then is the one where the “good patient” is obedient and does not question the medical authority through their own social and cultural perceptions about illness and its management. Legitimizing the superiority of medicine over the individual and society seems to marginalize any other form of perception and contextualization of the disease and create exclusionary relationships between medicine and any other alternative approach. In this chapter,2 I examine the conflicting relationship that seems to be raised within the Greek context of medical pluralism. Drawing on material from the ethnographic research that I conducted in a public cancer hospital in Athens (Greece), I explore the context of therapeutic choice, the process of which results in the emergence of discourses around morality and legality (Pardo, 2000; Pardo & Prato, 2019). Additional interviews had to be made in the circumstances of the pandemic; thus, they were conducted by phone, and they included patients who exclusively followed alternative treatment methods after their cancer diagnosis, rejecting any biomedical treatment. Interestingly, no contact with healers or medical oncologists who practise alternative treatment methods was achieved, despite my persistent efforts in sending emails and making phone calls. Within the context of economic crisis in Greece, people who experience cancer, either as cancer patients and/or as medical consumers, find themselves at the intersection of biomedicine and alternative medicine, where they are able to choose which treatment option fits them. The ethnographic analysis is focused on the way that cancer patients and medical oncologists perceive and contextualize this choice. The chapter is divided into six parts. In the first part I clarify the context of medical pluralism in Greece. In the second part I analyse the dominance of biomedicine and the construction of the biomedical subject, and in the third part I provide an ethnographic vignette as a starting point for my analysis. Then I focus on the ways in which alternative medicine is being constructed as the dangerous “other” as well as in the “right of choice”, concluding that the complex relation between biomedical and alternative treatment methods arises within conflicting discourses with legal and moral aspects. 2  This chapter has been produced after the IUS Workshop on Legitimacy “The Right to Public Health” which was held in Tuscany, 3–9 September 2021. The discussion around the Right to Health and Legitimacy was mainly aimed at the contextualization of the right to health as an object of study.

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Cancer and Medical Pluralism in Greece Cancer—not as a disease, but as an experience and as “something that happens between people” (Livingston, 2012, p. 6)—is the third cause of death in Greece after ischemic heart disease and cerebrovascular disease;3 in 2020, approximately 64,530 new cases are recorded. According to Jain Lochlann, “in an ideal world, a cancer diagnosis would come with an explanation of cause and move on to successful treatment” (2013, p. 19). Reflecting on Lochlann’s argument, I wonder, what does a “successful treatment” mean and how patients choose the way to achieve this “success”. Cancer treatment, within the general context of medical pluralism, includes the biomedical therapeutic pathway which consists of surgery, chemotherapy, radiotherapy, biological therapies and hormone therapy, but also CAM (Complementary and Alternative Medicine) which includes mind-body therapies (meditation, biofeedback, hypnosis, yoga, Tai Chi, imagery, creative outlets), biologically based practices (vitamins and dietary supplements, botanicals, herbs and spices, special foods or diets), manipulative and body-based practices (massage, chiropractic therapy, reflexology) and biofield therapy (reiki, therapeutic touch).4 As Ross notes, “it is significant that alter means ‘other’ in Latin […] and that the notion of alternative references the idea of choice, most commonly between mutually exclusive possibilities” (Ross, 2012, p.  6). In Greek, the word alternative (enallaktikos) means (1) someone or something that may be interchanged or may be used instead of another, or (2) someone or something that challenges established forms and norms.5 In Greece, the context of medical pluralism is not that clear. Alternative medicine exists in a lack of legal status, and it is practised by either medical doctors or healers (without medical licence). Alternative approaches reject and avoid the use of medicines and drugs that are used within the biomedical context. In Greece, it is illegal to practise medicine and perform 3   Source: Eurostat, 2016. https://ec.europa.eu/eurostat/statistics-explained/index. php?title=Causes_of_death_statistics last access 20.06.2021 4  Source: National Cancer Institute U.S. https://www.cancer.gov/about-cancer/treatment/cam last access 20.06.2021. 5  Source: Online Dictionary of Standard Modern Greek https://www.greek-language.gr/ greekLang/modern_greek/tools/lexica/triantafyllides/search.html?lq=%CE%B5%CE%BD %CE%B1%CE%BB%CE%BB%CE%B1%CE%BA%CF%84%CE%B9%CE%BA%CF%8C %CF%82 accessed 21.06.2021.

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treatments unless you are a certificated doctor and it is also illegal to sell and distribute medicines and pharmaceuticals which are not approved by the National Organization for Medicines. More specifically in the context of cancer care, biomedical treatment methods are the official forms of medical practice, but many patients choose to combine them with complementary treatments in order to relieve the side effects caused by the biomedical treatment. On the other hand, alternative medicine, as the “other” of the modern biomedical system (Ross, 2012, p. 2), exists outside of the Greek health care system, unlike the Prato’s case in this volume. Alternative medicine for cancer care is usually practised by healers or doctors and there is no specific legislation on the use and the practice of it. Those who practise alternative medicine usually prescribe to their patients drugs which either are of plant origin or are not part of the approved medicines of the National Organization for Medicines list. As I mentioned before, non-­ approved medicines are illegal; thus, they are usually renamed to “vitamins” in order to be legitimized. The plurality of therapeutic options for cancer is impossible to be depicted numerically for the Greek context as there is no National Cancer Registry; hence, there are no data concerning cancer patients in Greece. That means that since there is no official record of people being diagnosed with any form of cancer, there is also no record of their therapeutic choice. Patients as medical consumers acquire “an active role in becoming informed, making medical decisions, and determining the course of treatment and care” (Sulik & Eich-Krohm, 2008, p. 7). Within a social context where multiple treatment modalities are offered, patients are able to choose from the “treatment pool” and follow either the biomedical treatment process or alternative treatment or a combination of the aforementioned.

The Construction of the Biomedical Subject The “biomedical model” is a term that describes the dominant medical approach to health and illness in most Western health care systems. Since the end of the eighteenth century, health care has been formed by a perception of normality which is constructed through the supervision of the “medical gaze” (Foucault, 2003). According to Foucault, “up to the end of the 18th century medicine related much more to health than to normality […] (while) nineteenth century medicine, on the other hand, was regulated more in accordance with normality than with health” (Foucault,

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2003, p. 35). Conceptions of health and disease are formed in a way that health is negatively defined as the absence of disease. Hence, through the process of medicalization, medicine operates as the dominant institution for medical control and claims the power of constructing or redefining the “normal”. The hegemony of the medical gaze, which is raised during the nineteenth century at the same time with the development of the anatomoclinical method, indicates the need for setting the politics of medicine and its formation at a state level. The medical gaze and knowledge are located in the structure of symptoms and signs: The symptom […] is the form in which the disease is presented: of all that is visible, it is closest to the essential; it is the first transcription of the inaccessible nature of the disease. […] The sign announces: the prognostic sign, what will happen; the anamnestic sign, what has happened; the diagnostic sign, what is now taking place. Between it and the disease is a distance that it cannot cross without accentuating it, for it often appears obliquely and unexpectedly. (Foucault, 2003, pp. 90–91)

Until the nineteenth century, medicine was established as science. Techniques such as the stethoscope and the microscope enable doctors to look in the “inside” of the body. Robert Koch identifies specific germs that cause diseases in humans while the use of ether for anaesthesia along with the discovery of vaccination therapies that have been developed to address epidemics were some of the greatest revolutions in medicine (Ross, 2012, p. 14). Medicalization rises in the first decades of the twentieth century. At that time, scientific medicine has been established, replacing the era of medical pluralism that had preceded. As Klawiter writes regarding the case of cancer, “during the regime of medicalization, cancer treatment moved from the home to the hospital; surgeons were installed as the sovereign rulers of the kingdom; breast cancer was discursively constructed as a curable disease, and women exhibiting the ‘danger signals’ of breast cancer were reconstituted as the new subjects of the regime” (Klawiter, 2008, p. xxvii). As early as in the 1890s, “eradication”, the radical mastectomy, a method that was a legacy of the progress of the nineteenth century, surgery introduced by the pioneering surgeon Halsted (Mukherjee, 2011, p.  14), becomes the hegemonic treatment, as the removal of the lesion becomes synonymous to cure.

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In this context, the patient is responsible to recognize symptoms, seek diagnosis and follow medical treatment. The biomedical approach does not recognize the patient as a wholeness, but rather as a patient—or a potential patient—with diseased parts. This patient, as a biomedical subject, is expected to comply through “self-control, the understanding of ‘proper’ information (devoid of ‘harmful’ cultural and social ideas) and the adherence to (expert) biomedical guidance” (Confortini & Krong, 2015, p. 1353); otherwise, as a “matter out of place” (Douglas, [1966] 2002), it is constructed as a “risky subject” morally judged for its choice.

The Right to (the Right) Choice “It is another Wednesday morning in the field”, I thought while I was entering the hospital’s main entrance, only to be disproved as soon as I arrived in the third floor cancer ward. I felt the agitation when I faced the doctors and the interns going in and out the ward’s director office. “What is going on?” I asked timidly to John,6 a young intern. “Come with me”, he said, “and find out by yourself”. I started following John who entered room n. 3 along with Dr Bella, one of the medical oncologists of the ward. “How are you, Jenny?” Dr Bella asked the woman who was lying down in the bed in front of us. “Shitty fine, thank you”, she replied cynically with a blank stare. “Mrs. Prigou, 46  years old, diagnosed with an obvious breast cancer, unknown cancer staging, admitted last night due to paralysis. She is refusing any diagnostic test or treatment. We administer cortisone and we have planned radiotherapy in order to treat the paralysis and just that”, John said while looking at me in a rather strange or even conspiratorial way as if he was telling me, “Did you get it?” [excerpt from fieldnotes]

Jenny was diagnosed with breast cancer two years ago. “I was fine in July. A month later the pain started. In September we discovered 11 tumours in my right breast and a doctor gave me only two months to live”, Jenny told me. After the diagnosis, she accepted with many reservations to surgically remove her breast but then she decided to follow an alternative treatment. She continues: I met a medical oncologist who treats his patient in “the other way” (alternatively), not chemo, radio and all these poisons. He said that he can cure 6  Following the common anthropological practice, I use pseudonyms for my interlocutors, while I adopt a descriptive reference for my fieldwork site.

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me if I follow his instructions; a specific diet, cannabis oil and physical exercise. And he also provided me with some “vitamins”, you know, the only medicine that can cure cancer but of course it is illegal here in Greece because if it was legal all that “piddly” doctors would be unemployed now. So, I chose this “other way”. And you know what? I’m so fucking tired of trying to explain to everybody in here that I have the right to choose. I don’t have to explain myself or justify my choices. How can anyone judge me?

Jenny’s decision to insist on getting an alternative treatment was indeed judged by the doctors of the clinic who thought of her as “irrational”. Within the medical discourse alternative treatment emerges as the “wrong choice”, while Jenny’s doctor was judged as “dangerous” and “immoral”. According to Gellner, “in modernity most people take the canons of rationalism and science to be the only way of thinking, while relegating everything else to the informal sphere” (Gellner 1974 in Lazar, 2006, p. 38). It costed us a fortune, but it was totally worth it. For one and a half year I was just like you. Healthy and pretty. And then, I was not. My doctor told me that, there is probably a metastasis caused by the surgery (mastectomy) because cancer is transferred through blood.

Wondering how she met this doctor, she told me: Well, we did our research of course. We also met some healers, but nobody could provide those “vitamins”. We had been told that these are the most expensive you can find in the market, most probably because they are obviously illegal but totally effective. I would have been cured if I didn’t have that surgery. That’s why I don’t trust them anymore.

I left the room and returned to the ward’s director office, Dr Alexandris with whom I had quite a long conversation: He (the other doctor) is an immoral person. He is not a doctor. He looks for consumers to sell his “magic” illegal “mantzounia—μαντζούνια” (herbal mixtures) only to see his bank account grow. He used to be my intern, and that’s the worst. He is now performing alternative medicine, possible for the money […] Unfortunately, this woman (Jenny) is not his only “victim”. All these years … I have seen many patients who are hospitalized here only to die just because he sells hope in a very expensive price… He has been expelled from the Hellenic Society of Medical Oncology meaning he cannot practise oncology anymore. He is totally immoral as he

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sells these “mantzounia—μαντζούνια” (herbal mixtures) as vitamins, not as medicines and this is how he covers the illegality. He should also be charged for tax evasion, this is also illegal, what do you think, that you buy these “vitamins” for 800 euros and you get a receipt? […] But he is not the only one. There are many out there, killing people without guilt Some of them are doctors, others are “healers”… They are all “agirtes—αγύρτες” (charlatans)… Since we (the Medicine) haven’t cured cancer yet they will be more and more…

Apart from his anger towards the medical oncologist who treated Jenny’s breast cancer with “vitamins”, Dr Alexandris’ anger was equally towards Jenny and all the patients who choose an alternative treatment. Dr Kazou, another medical oncologist of the ward, stressed other aspects of alternative medicine: People using this kind of methods are usually uneducated people. They usually live in a village far from the city centre. That means they live in the past. And of course, most of the times they are women! Even when you see a man patient, I believe that his wife made him forsake the real medicine. I can’t explain it otherwise. I don’t see any reason for anyone to make such a bad choice.

Jenny’s story raises several issues that can be further analysed. The therapeutic choice between conventional medicine and alternative medicine seems to be interpreted by medical oncologists as a moral choice in terms of “right and wrong”. On the other hand, doctors who follow alternative treatments are also morally judged and expelled from official forms of collective structures as the legitimacy of their actions is disputable. According to Italo Pardo, legitimacy as a social process that is culturally constructed makes sense through an emic approach (Pardo, 2000, p. 6). In this case, the patient’s choice for an alternative treatment is apparently legal but morally illegitimate, as it acquires ambiguous contextualization for both sides. Alternative medicine, also, seems to acquire chronical, geographical and gendered aspects, and therefore, it is constructed not only as the “otherness” within medical pluralism but also as a practice that belongs to the past, not to the modern scientific present and future. Anthropological studies of health and illness have recorded an abundance of healing practices and experiences among patients (Kleinman,

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1980). Medical pluralism7 allows people to choose from a variety of socially legitimized therapeutic ideologies and practices (Leslie, 1975), but modern biomedicine is usually in a preeminent status. Other forms of treatment can be socially legitimized, but their implementation comes only from personal financial resources; therefore, the terms “alternative” or “complementary” in biomedicine are subjectively used to refer to “peripheral” forms of care and treatment (Trakas, 2007). According to Ernst et  al, complementary and alternative medicine can be defined as “diagnosis, treatment and/or prevention which complements mainstream medicine by contributing to a common whole, by satisfying a demand not met by orthodoxy or by diversifying the conceptual frameworks of medicine” (Ernst et al., 1995, p. 506).

The “Otherness” Within and During Medical Pluralism In Greece there are famous stories coming from the past about people who pretended to be healers or doctors selling the “cure” for cancer. Perhaps, one of the most known stories which have been described as a case where “the irrational turns against rationalism in an effort to replace it” (Avdikos, 2018, p. 157) is that of the “miracle water”, also known as “the water of Kamateros”. In 1976, a 36-year-old lawyer claimed the discovery of cancer’s cure in the island of Kos, a “miracle water” with radioactive elements that could cure cancer. At first, the water was being distributed in Athens secretly, as a drug for cancer, and since it was not licensed as an anti-cancer drug, the distribution was illegal. But it became immediately famous and its availability acquired a moral legitimacy and a social acceptance from rumours and public statements of patients who claimed to be cured after drinking the water. Soon, the water came to the providence by tankers and people would be in lines for hours in order to buy “the cure”. But soon enough, people started filing complaints about the side effects of the “miracle water”. Deaths were recorded and medical 7  I follow the definition of the term “medical pluralism” from the Cambridge Encyclopaedia of Anthropology where it is defined as the “[…] the availability of different approaches, treatments, and institutions that people use to maintain health or treat illness. Most commonly, medical pluralism entails the use of Western medicine or ‘biomedicine’ and what is variously termed as ‘traditional medicine’ and ‘alternative medicine’” Khalikova, Venera. 2021. “Medical pluralism”. In The Cambridge Encyclopaedia of Anthropology, edited by Felix Stein. Online: https://doi.org/10.29164/21medplural.

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associations were stressing the danger of its consumption. On 30 March 1976, the consumption of the “miracle water” was officially banned as “dangerous for the public health”; the lawyer was arrested and was judged for impersonation of authority and illegal distribution of medicinal products. The case of the “miracle water” was not the only case when someone was promising the cure for cancer. In 1952 the “bitter plant” raised as the current cancer cure, while 50 years later olive leaves were consumed by many patients as a cancer treatment. What has changed since then? The legal context became even stricter, so today only approved medicines are considered to be legitimate. Still, there are many cases of doctors convicted for the violation of the medical ethics because they convinced cancer patients to follow alternative methods of treatment, by selling them unlicensed drugs under the label of “vitamins”. Selling (over-costed) non-­ medical products is “contrary to the rules of documented and evidence-­ based medical science in accordance with the law” (No 3418/2005). It seems that the “discovery” of the “miracle water”, as well as those of all the above-mentioned cases, is questioning the rationalism of the medical science. The “miracle water” is also recorded as a metaphor in the public discourse (Avdikos, 2018), and it is related to other social, political and cultural perspectives that are identified as “irrational”.

The Dangerous “Other” and the Right of Choice Mary, a 72-year-old woman, lost her husband six years ago. She tells me how her husband decided to follow an alternative treatment when he was diagnosed with lung cancer: We went to a healer who could provide us with some vitamins. He imported them from an unknown country and they really helped my husband. His cancer was actually everywhere in his body, but the healer told us that these vitamins have the ability to detect a cancer cell that is created in the body, they strike it and destroy it without damaging healthy tissues […]

Mary tells me many stories about her friends who chose alternative treatment methods. She explains to me that she follows a holistic approach that includes, first of all, a positive way of thinking, then physical exercise, relaxation and meditation, rawism, and a daily use of enema in order to effectively remove toxins from the intestine. She also shared her own

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experience on how she was diagnosed on a pre-cancer stage but followed exclusively a holistic approach and “never dealt with this again”. She believes that “they (the oncologists) fight this (the alternative treatments) due to the lack of evidence. What could be the greater proof than the fact that all herbs, with their beneficial substances, come from the nature?” she asks. In Mary’s narrative, “nature” seems to be codified within a system with moral connotations where “natural” is against “artificial” and the “pure” (of nature) is against “toxic” (of the medicines). And while “evidence” for Mary is nature itself, a medical discourse turns the argument upside down. Dr Leontis, a medical oncologist who was one of my main interlocutors during fieldwork, is talking about the issue of evidence-based medicine, reversing Mary’s argument. He believes that people try to seek the “scorpion’s poison8 or whatever they assume to be ‘the cure’ according to the current trend. This is what healers ‘use’, ‘the need for hope’”. Chemotherapy has a bad reputation. Τhis is a fact that we oncologist should accept. This reputation comes from chemotherapy’s toxicity but today we are able to deal with this. Another reason for this reputation is the result. Chemotherapy didn’t use to work with such success as it does today. But do you know what’s wrong with all these alternative treatments? Every treatment must be based on evidence; something that can justify why you do what you do. The argument “from my experience I know that this mantzouni will cure your cancer” is not scientific. Science is the result of knowledge that comes from data. Data are collected through experiments […] In other words, we (the oncologists) have evidence, the others (the healers) don’t. And this is exactly the reason why this is totally immoral. Because they know that they don’t have any evidence that their “treatment” can cure cancer, and for me it is immoral to know that you sell fool’s gold and still do it.

Kalliopi was 32 years old when she was diagnosed with breast cancer. She was terrified and confused about the “right choice” she had to make. She visited three different medical oncologists only to realize that the only offered choice was that of chemotherapy.

8  In October 2004, the existence became known of an illegal network that used to organize the transport of Greek cancer patients to Cuba in order to procure the scorpion’s poison as an anti-cancer therapy.

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A friend of mine called me and told me about a healer in Italy who was treating cancer patients. “He is very famous, but, the most important, he saves lives”, she told me. I knew all the unpleasant side effects of chemotherapy but I knew also that after chemotherapy I wouldn’t be able to have children, and that was the scariest. And not to die of course. I found a contact and I arranged to go to Italy to meet this healer. I didn’t care about the money. My husband had decided to sell the house he inherited from his mother, so money wouldn’t be a problem. But when I arrived in the airport, my legs were frozen. Deep inside me I knew I shouldn’t trust a treatment which is non-medical. It was a treatment which was not approved from any official agency. It was based on some herbals. And everybody had criticized me for this choice. Even one of the oncologists I visited told me, “It is your choice, of course, you can try this charlatan but don’t come back to me when you will be close to death”. So, I decided to make the “right” choice. The “right” for whom, though, I am not sure…

Choice seems to be the stake at this debate between biomedical treatment and alternative medicine. Choice as a right becomes a claim from the patients, though for the medical oncologist choice entails negotiable moral aspects. According to the European Charter of Patients’ Rights which was drafted in 2002 “each individual has the right to freely choose from among different treatment procedures and providers on the basis of adequate information. The patient has the right to decide which diagnostic exams and therapies to undergo, and which primary care doctor, specialist or hospital to use”. “Evidence” acts as a legalization process through which treatment acquires its moral and scientific status. Barry claims that “evidence” has become an increasingly strong rhetoric in biomedicine in the last few years (Barry, 2006, p. 2648), while Lambert aptly claims, “Evidence is always evidence ‘of’ and ‘for’ something (Csordas T.  J., 2004); in the case of medicine, it specifically refers to the effectiveness of biomedical interventions for improving practice (and hence, ultimately, health status)” (Lambert, 2009, p. 16). Foucault, in The Birth of the Clinic, describes how the medical profession acquired prestige and power through the “scientific” knowledge resulting at the establishment of disease’s categories, which define the “normal” and the “deviant”. Biopower operates through the production of knowledge but also through the production of willingness to comply to those rules, that knowledge has established. Self-­ discipline and self-surveillance regulate the body in order to be complied with the norms but also to “confess” any deviation from these norms (Pylypa, 1998, pp. 21–24).

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“Patients have the right to choose which treatment is the best for them”, Dr Ivanos, a private practice medical oncologist, claims. The problem is that this alternative industry of health is growing rapidly and attracts unprotected (from the law) patients who will pay for any promise of cure without side effects. But when there is an exchange of money and the product is “too good to be true”, what remains for us (the oncologists) to say is: “the byer should be careful”.

Medical Realities Revisited Treatment choices, and by extension alternative medicine, indicate that rejection or acceptance of the biomedical model consists of a personal ethic. As in Sarfati’s case (2023), the alternative medicine is being constructed as the “other” but also as a “right of choice”. Medical oncologists disapprove the choice of an alternative treatment as unproven by science, ineffective for curing cancer and totally harmful to the patients in the context of consumerism. Biomedicine appears to be unquestionable, legitimate and, above all, scientific. Thus, any alternative treatment methods entail moral ranking of knowledge and are perceived to be unreliable, dangerous and an expensive commercialization of hope. On the contrary, patients who choose an alternative treatment, as part of their lifestyle, consider this choice as a right. This contradiction reveals the political aspect of knowledge, which is produced within the context of biomedicine, but also, the way that the biomedical system is being challenged (Olson, 2023). Hierarchies of knowledge and their moral rankings construct alternative treatment methods as morally illegitimate and dangerous. The Greek ethnographic context of medical pluralism reveals this complex relationship that arises within conflicting discourses which are embedded in a framework where legality and morality are connected to each other resulting into cultural shifts in the expectation of health care.

References Avdikos, E. (2018). To nero tou Kamaterou: otan i aelpisia synanta ton kompogiannitismo [Kamatero’s water: When desperation meets tsarlatanism]. In Kentro Laografias. Laiki iatriki kai iatriki epistimi. Sxeseis amfidromes [Folklore Centrer. Folklore medicine and medical science. Mutual relashionships] (pp. 157–185). Athens: National Printing House [in Greek].

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Barry, C. A. (2006). The Role of Evidence in Alternative Medicine: Contrasting Biomedical and Anthropological Approaches. Social Science & Medicine, 62, 2646–2657. Confortini, C. C., & Krong, B. (2015). Breast Cancer in the Global South and the Limitations of a Biomedical Framing: A Critical Review of the Literature. Health Policy and Planning, 30, 1350–1361. Csordas, T. J. (2004). Evidence of and for what? Anthropological Theory, 4(4), (pp. 473–480). Douglas, M. (2002). Purity and Danger: An Analysis of Concepts of Pollution and Taboo. Routledge. Ernst, E., Resch, K. L., Mills, S., Hill, R., Mitchell, A., Willoughby, M., & White, A. (1995). Complementary medicine—a definition. British Journal of General Practice, 45, 506. Foucault, M. (2003). The Birth of the Clinic. Routledge. Klawiter, M. (2008). The Biopolitics of Breast Cancer. Changing Cultures of Disease and Activism. University of Minnesota Press. Kleinman, A. (1980). Patients and Healers in the context of culture. Berkeley: University of California Press. Lambert, H. (2009). Evidentiary truths? The evidence of anthropology through the anthropology of medical evidence. Anthropology Today, 25(1), (pp. 16–20). Lazar, I. (2006). Taltos Healers, Neoshatnans and Multiple Medical Realities in Postsocialist Hungary. In H. Johannessen & I. Lazar (Eds.), Multiple Medical Realities. Patients and Healers in Biomedical, Patients and Healers in Biomedical (pp. 35–53). Berghahn Books. Leslie, C. (1975). Pluralism and integration in the Indian and Chinese medical systems. Στο A. Kleinman, Medicine in Chinese Cultures (pp. 401–418). Washington D.C.: U.S. Government Printing Office Livingston, J. (2012). Improvising Medicine. An African Oncology Ward in an Emerging Cancer Epidemic. Duke University Press. Lochlann, J.  S. (2013). Malignant. How Cancer Becomes Us. University of California Press. Mukherjee, S. (2011). Emperor of All Maladies: A Biography of Cancer. Scribner. Olson, E. (2023). Health Sovereignty in West-Central Mexico: Legitimacy from the Grassroots. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 11. Palgrave Macmillan. Pardo, I. (2000). Morals of Legitimacy: Between Agency and System. Berghahn. Pardo, I., & Prato, G. B. (2019). Ethnographies of Legitimacy: Methodological and Theoretical Insights. In I. Pardo & G. B. Prato (Eds.), Legitimacy: Ethnographic and Theoretical Insights. Palgrave Macmillan. Pylypa, J. (1998). Power and Bodily Practice: Applying the Work of Foucault to an Anthropology of the Body. Arizona Anthropologist, 13, 21–36.

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Ross, A. I. (2012). The Anthropology of Alternative Medicine. Berg. Sarfati, L. (2023). The Biopolitics of Complementary Spiritual Healing in South Korea and Israel. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 10. Palgrave Macmillan. Sulik, G. A., & Eich-Krohm, A. (2008). No Longer a Patient: The Social Construction of the Medical Consumer. In M. S. Chambr & M. Goldner (Eds.), Patient, Consumers and Civil Society. JAI Press. Trakas, D. (2007). Iatriki sti syghroni Ellada [Medicine in modern Greece]. Archaiologia & Tehnes, 105, pp. 6–10. [in Greek].

CHAPTER 6

Covid-19 Pandemic, Hydroxychloroquine, and Healthcare System in Turkey Ebru Kayaalp Jurich

Introduction When the world was overwhelmed by the Covid-19 pandemic, certain drugs were touted as ‘miracle cures’ for the infection. One of these miracle drugs was hydroxychloroquine (hereafter HCQ), an anti-malarial drug. From the beginning of the pandemic, HCQ has emerged as the most controversial medicine: despite the lack of evidence for its efficacy and the scientific evidence of side effects, several countries have insisted on using it for the Covid-19 treatment. After World Health Organization (WHO) stopped recommending HCQ for the treatment of Covid-19 in July 2020, the enthusiasm for the drug rapidly declined and the countries which used to be administrating the medicine to their patients eventually stopped using it. Interestingly, Turkey remained one of the countries which insisted on using the drug—timewise longer and quantity-wise more than any country in the world.

E. Kayaalp Jurich (*) Department of Anthropology, Yeditepe University, Istanbul, Turkey © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 I. Pardo, G. Prato (eds.), The Legitimacy of Healthcare and Public Health, Palgrave Studies in Urban Anthropology, https://doi.org/10.1007/978-3-031-25592-2_6

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In the beginning of the pandemic, Turkey was standing out with its low death rates among the European countries. The Turkish government was bragging about its strong healthcare infrastructural system while explaining its success against Covid-19.1 One of the reasons they put forward for their ‘success’ was their early use of HCQ in Covid-19 treatments. The minister of health stated that they had stocked 1 million boxes of HCQ before the first Covid-19 case was seen in the Turkey (Koca, 2020a). Then, the government started using the drug not only for every Covid-19 patient (regardless of their age and health conditions), but for patients’ contacts who are not even sick. When the country’s success story faded away especially in mid-April 2021, as it appeared one of the worsthit countries with more than 60,000 new cases a day and more than 300 deaths, the Turkish government had to announce a full lockdown effective for 17  days. In the meantime, Turkey’s persistent use of HCQ has constantly been questioned by national health organizations to no avail. The ministry of health finally removed the drug from its official treatment plan on 7 May 2021, after having administered it for more than one year. There is no clear data in Turkey on how many people were given HCQ. But considering the number of Covid-19 patients, it should have been more than 5  million people and this number does not even include the contacted people. This chapter investigates the questions of what legitimacy or illegitimacy is attached to HCQ treatment regime in the public, and to what extent health policies that are imposed in the name of the common good are received as il/legitimate at the grassroots (Pardo, 2000; Pardo & Prato, 2019). How is HCQ treatment received at the grassroots? What tensions exist, if any, between the government health policies and the public response regarding the HCQ treatment? How do the patients and doctors react to the use of HCQ in the treatment of Covid-19? What does the comprehensive administration of a non-evidence-based drug disclose about the healthcare system in Turkey in general? When scientific studies have raised serious safety issues of the drug, many countries in the European Union (EU) banned the use of HCQ for  However, Kayaalp and Isik (2020) suggest that rather than a robust healthcare system, the system’s openness to manipulation and exploitation made it more flexible, lending it a degree of versatility and malleability that proved conducive to responding to Covid-19. 1

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Covid-19 outside of clinical trials.2 Yet, the health policies of Turkey in the case of Covid-19 are in direct opposition to the international public health authorities, and the entire country becomes a clinical trial place by the hand of its own legitimacy. The article investigates the responses of citizens as well as health professionals to the government’s long-lasting support of the HCQ with a focus on the question of legitimacy. In this sense, it contributes to the discussions of ‘the relations between ordinary people and their rulers and the legitimacy of governance’ (Prato & Pardo, 2013, p.  98; Pardo & Prato, 2011, 2019). Pardo (2000) clearly explains that people do not see what is legal as necessarily legitimate; on the other hand, what is not legal is not automatically regarded as illegitimate. In other words, the question of legitimacy is not a simple one and requires an analysis that cannot be reduced to a ‘set of technical rules to be applied according to impersonal principles’ (Prato, 2018, p. 10). In the contemporary world, citizens are increasingly questioning the legitimacy of  the decisions of their rulers, and this article, in a similar vein, analyses the HCQ use among patients and doctors through fieldwork. The ethnographic research of this article is based on three-month-long fieldwork. I have conducted semi-structured in-depth interviews with 16 people. Among the interviews, only 5 were conducted in person, and all the other 11 were done via online or telephone meetings because of the Covid-19 pandemic, and each of them lasted for about 30–90 minutes. I conducted interviews with 12 people who had Covid-19 and with 4 doctors having different specializations in medicine. Except for one informant, upon her request, all interviews were recorded. I did my best to distribute my sample group of patients widely; from university professors to people who have no formal education; from 21 to 75 years old; from very sick and hospitalized ones to moderately ill Covid-19 patients. All these interviews were conducted after receiving the participants’ consent and assured them that their names would remain anonymous. In addition to the fieldwork, I have done media research about the drugs used to treat Covid-19 in Turkey. The media research started with the Turkish government’s legal recognition of the Covid-19 cases on 12 March 2020 and ended with the ministry of health’s decision to stop using HCQ in their treatments on 7 May 2021.  https://www.ema.europa.eu/en/news/covid-19-chloroquine-hydroxychloroquineonly-be-used-clinical-trials-emergency-use-­­programmes. 2

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A Miraculous Drug The anti-malarial drug chloroquine and its safer version HCQ have been in use since the 1940s to treat chronic inflammatory diseases such as systemic lupus erythematosus, rheumatoid arthritis, and Sjögren’s syndrome (Charlier et al., 2020, p. 2). Since the start of the pandemic French microbiologist, Didier Raoult,3⁠ defended the use of HCQ, and his collaborative study based upon a non-randomized clinical trial demonstrated that patients who had received the medicine were cured in six days (Gautret et al., 2020). It was an appealing medical advice since Raoult’s treatment has been based on HCQ which almost cost nothing compared to a patented drug Remdesivir produced by Gilead Sciences (Mucchielli, 2020, p. 737).⁠4 When in the latter days, Raoult appeared on a Fox News programme, hosted by Turkish-American Dr Mehmet Oz, the most prominent medical voice advocating HCQ, and then after Elon Musk tweeted a link of his paper supporting the anti-malarial drug in the treatment of Covid-19, Raoult’s therapy has become famous in the USA too. On 19 March, Donald Trump praised the drug as having ‘a real chance to be one the biggest game changers in the history of medicine’.5 Then after a week, Bolsonaro and Netanyahu joined Trump in their praises and ordered their own medical authorities to include the drug in national treatment protocols (Casarões & Magalhães, 2021). As no drugs were available to fight against the battle of Covid-19, the WHO and the FDA authorized the use of HCQ based on previously available clinical observational studies. The FDA issued an emergency authorization to allow off-­ label use of the medicine for the treatment of hospitalized Covid-19 patients based on ‘limited in vitro and anecdotal clinical data’.6 Yet, less than a month, it warned against the use of medicine for Covid-19 due to safety concerns. And on 15 June, the FDA ultimately revoked the emergency use authorization of HCQ in Covid-19 with the conclusion 3  It is essential to state that Raoult is not the first scientist who advocated the use of HCQ. The Chinese scientists promoted chloroquine as early as February 2020. Yet, it was Raoult who shifted the focus from chloroquine to hydroxychloroquine and made it popular in the Western world. 4  Raoult’s paper was harshly criticized in scientific circles for lack of methodological rigor (Grens, 2020). 5  https://thehill.com/homenews/administration/488796-trump-steps-up-effortto-tout-malaria-drug-as-coronavirus-game. 6  https://www.fda.gov/media/136534/download.

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that the drug is unlikely to be effective, and potential risks outweigh the benefits.7 In a similar vein, on 4 July, the WHO announced termination of patient enrolment in HCQ trial arm because the interim results showed that the medicine did not reduce mortality in hospitalized Covid-19 patients. Consequently, countries that had once recommended HCQ for Covid-19 treatment, including France, Italy, and Belgium, all stopped using it.8 Even China which continued using the drug for a long-time ended administrating it in August 2020 (Tang et al., 2021). The Turkish government from the beginning of the pandemic touted the use of HCQ and explained the country’s relative success in controlling the number of deaths with the early use of this medicine in the Covid-19 patients.⁠9 According to a manual published by the ministry of health, doctors were free to begin prescribing medicine for Covid-19 treatment after they have made their clinical diagnosis, even without waiting for the results of the PCR test. In the first stage of the treatment, the medicine HCQ was used and then patients were given antiviral medicine Favipiravir. On 15 April, Turkey’s minister of health underlined that this standard treatment approach was unique to Turkey: No other country used the drug Hydroxychloroquine in the initial treatment of all suspected and positive cases [of Covid-19]. We stocked one million boxes of the drug before we even had our first case. Also, no other country uses the drug Favipiravir, imported from China, in the way we use it. (Koca, 2020a)

Whereas these drugs are strictly regulated outside of Turkey, especially in Europe, because of their serious side effects and unproven results, doctors in Turkey were less bound by treatment and ethics regulations, which gave them the freedom to administer them for the treatment of Covid-19 liberally. A doctor, I interviewed, explained the situation as such:

7  https://www.fda.gov/news-events/press-announcements/coronavirus-covid-19update-fda-revokes-emergency-use-authorization-chloroquine-and. 8  https://www.reuters.com/article/health-coronavirus-hydroxychloroquine-fr/ eu-governments-ban-malaria-drug-for-covid-19-trial-paused-as-safety-fears-grow-­ idUSKBN2340A6. 9  In July 2020, despite several measures, such as social distancing and imposing lockdowns, many European countries had a death rate in the double digits, while Turkey seemed to have fared much better, reporting a death rate from the virus of only 2.5%.

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Turkey is the country that uses HCQ the most. But we have no real evidence-­based science [to support] why we use this drug…. Favipiravir is the same. It was experimental too. The ministry of health has facilitated this process. I have never seen any medicine as easily accessible as these drugs.

Especially after the decision of WHO stating that HCQ was not effective in the treatment of Covid-19 but had serious side effects, many health professionals stopped administrating these drugs in Turkey. The Turkish Medical Association (TTB), The Turkish Clinical Microbiology and Infectious Diseases Association, and Turkish Thoracic Association have warned the government several times about the side effects and ineffectiveness of the anti-malaria drug. As one doctor working in a private hospital stated to me: HCQ was used in the first wave. Then it was proven that it has no efficacy, and our medical clinic, like many clinics in Turkey, took it out from their medical protocol. Yet, the ministry of health in the second or even in the third wave, continued administrating it. When you get sick, you call 112, and they send filyasyon ekibi which hands over the pills to you. But so many doctors had already taken it off from their treatment protocols.

The ministry of health established these tracer teams, called filyasyon ekibi, with the goal of screening the chain of contact in the infectious disease, reaching people infected by the coronavirus, monitoring them, and isolating the diagnosed for treatment. However, the original team, which was supposed to be comprised of epidemiology investigators and tracers, would later be replaced by muhtars (heads of local governments), teachers, and other public employees as Covid-19 cases drastically increased. Lacking sufficient expertise, time, and personnel, the teams eventually end up dropping a bag of drugs at the door of the Covid-19 patients.⁠10

A Bag of Pills They have come to our door. I stepped out and put my mask on. They made me sign a paper. Then they handed me something like a brochure, stating how the medicines must be taken. They told me ‘use your drugs’ and ‘if you have fever or feel bad, use Parol’. Then they left. It was not more than 5 minutes. 10  https://www.evrensel.net/haber/431209/etkili-filyasyon-yok-filyasyon-sadece-aileicine-indirgenmis-durumda.

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My informant was depicting a typical encounter between a Covid-19 patient and filyasyon ekibi distributing the drugs, HCQ and Faviprivir, to the patients suffering from Covid-19 at different levels. Not only the Covid-19 patients who had positive PCR tests but also their contacts were given these drugs. A pulmonologist described this situation as such: Filyasyon ekibi is supposed to trace back all the contacted people of the Covid-19 patient. In Turkey this was not the case […] What they have basically done is to distribute drugs to everybody else. Even though we, doctors, have raised our concerns about these drugs, the teams were still delivering them in plastic bags. These teams didn’t have any medical doctors. At the best, dentists were there. In many places, we see non-health professionals such as imams, body-shop workers within the teams. They had no knowledge about the medicine they were distributing. What they were saying to the patients is that ‘they have given this plastic bag full of medicines to us and you are supposed to take them’. They have no knowledge of which ages could take this drug; what side effects this drug had […] Nothing! They just drop the drug and leave.

A doctor in the filiation team, later on, would confess to the BBC that the team was only handing over the drugs to the patients:11 We have gone to an old patient when working at 112. Before us, the filiation team did not tell him anything, they just left after having dropped the drugs. The patient got worse, and his saturation dropped under 90 in the meantime. From the beginning this patient should have taken to the hospital. […] The filiation team should always ask the patients if they have any chronic diseases. But sometimes they don’t even bother. If the patient has a chronic disease, then he should be treated at the hospital.

Several studies (Arnold, 2022; Mollica, 2022; Prato, 2022) discussed and ethnographically demonstrated that the pandemic did not hit everybody indiscriminately. There are lots of differences and areas of inequalities in access to healthcare in several countries, which have led to other inequalities as well. However, the drug policy in Turkey adopted by the government has been pretty democratic since a standard medical regimen was applied to everybody in Turkey. The drug has been available to everyone regardless of age, gender, ethnicity, and socioeconomic conditions.  https://www.bbc.com/turkce/haberler-turkiye-56716360.

11

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Yet, this seemingly ‘democratic’ procedure was flawed from the beginning as it was discarding the underlying health conditions of the Covid-19 patients. Medical sciences have historically relied on a ‘standard’ human, while they have failed to incorporate women, people of colour, children, and the elderly in disease research (Epstein, 2009).12 The drugs are specifically designed for that one sort of person and do not work in the same way for all patients. However, the problem in Turkey was more than administrating the drug for ‘the standard human’: during the pandemic an undifferentiated sick population—including those who are not even having Covid-19—was created and HCQ medication was administrated to every individual in this group.

Drugs as Legal Rights The Covid-19 pandemic has arguably been one of the greatest challenges to evidence-based medicine since the term was coined in the last century (Pearson, 2021). Patients, doctors, and politicians have been scared, overwhelmed, and wanted quick solutions, but completing randomized clinical trials takes time. HCQ was the most-tested drug according to a database of 2900 Covid-19 clinical trials: it was tested in 250 studies involving nearly 89,000 people (Pearson, 2021). Yet the convincing evidence showed that the drug does not have efficacy and should not be recommended to treat Covid-19. Evidence-based medicine has been championed as bringing a transparent and credible means of making a medical decision. The idea that doctors have had medical interventions unsupported by any scientific evidence has led to the idea of creating standards across all phases of the ‘production, distribution, and consumption of evidence’ (Ecks, 2008, p. S81) grounded in ‘legitimate’ forms of statistical results.⁠13 In that sense evidence-­based medicine creates a kind of ‘audit culture’ (Shore & Wright, 1999; Strathern, 2000) through which the accountability and transparency of medical knowledge are evaluated and judged by an authority. 12  The adult white man was taken as the standard human type in medical research since his body was ‘simpler’ to study compared to women whose fluctuating hormone levels could confound the effects of medical therapies (Epstein, 2009, p. 44). 13  However, there is also a literature (Lambert, 2013) questioning the meaning and the generalizability of the evidence-based medicine on the grounds that same outcomes cannot be replicated in different contexts.

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Public trust in medical knowledge and decisions is sustained through ‘objective’ statistical evidence (Lambert, 2006). There was then this crucial question why the Turkish government has widely distributed a drug even after the decision of the international health institutions, such as the FDA and WHO, stating that the drug is ineffective in the treatment of Covid-19, and moreover might have serious side effects. In my fieldwork, I have come across several accusations that the government that was simply trying to melt down the stocks of HCQ that had been hoarded at the beginning of the pandemic. A deputy from the oppositional party also brought this issue to the attention of the parliament. After citing the side effects of the HCQ, the deputy asked if the Covid-19 patients’ consents were taken for HCQ and if the government’s original plan was to consume its overstock of HCQ.14 What is more significant is that the Turkish government was trying to leave a positive impression on the public that the country has had the sufficient infrastructure as well as vital skills to manage and control the pandemic. Its presentation of the drug as effective and necessary for the Covid-19 treatment was an attempt to legitimate the drug and to present that the government has been well-prepared for a disease that has no treatment in fact.15 Lasco (2020) uses the term ‘medical populism’ to explain how in several countries, such as Brazil, the Philippines, and the USA, political leaders have reacted to the pandemic by offering similar solutions. One of the strategies adopted by the government is the ‘simplification of the pandemic’, such as offering ‘quick fixes like an effective drug (e.g. hydroxychloroquine)’ (1418). Pharmaceuticals have always played a crucial role in the politics of health and citizenship in Turkey. Through medicine, the state has always spoken to its citizens, and in return, citizens have taken it for granted that drugs are their legal rights to healthcare.16 Dole (2012) poignantly shows  https://twitter.com/muratemirchp/status/1390948080917389313/photo/1.  Armstrong and Rosbrook-Thompson’s (2022) ethnographic analysis of the public health programmes in the area of violence in London vigorously illustrates how people were sceptical of these programmes but they were united on the belief that the model could demonstrate success. In their words: ‘the public health approach had the ability to demonstrate success, despite underlying questions as to its adequacy and legitimacy’. Similarly, the Turkish government has the goal of demonstrating success with the goal of filling the vacuum in the treatment of Covid-19. 16  See also Petryna’s work (2002) on biological citizenship which discusses the ways in which the state uses access to health for its own legitimacy, while the citizens struggle to get the benefits promised by the state. 14 15

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the role of medicine within the history of Turkey’s modernization project and illustrates how treatment served to frame the proper role of the new state in the daily lives of its citizens. The medical system was in a dramatic increase from the beginning of the Turkish Republic, which carried the idea that ‘[h]ealth, (both individual and national), and development (both individual and national), were conceived as inseparable’ (2012, p.  51). This approach has been fortified by the AKP government’s Health Transformation Programme, launched in 2003. The government has founded a single-payer healthcare system providing basic benefits to the entire population by unifying existing social security funds. This reform has significantly expanded access to public health services. In 2013, the healthcare system reached a coverage rate of 98 per cent for health services and 74 per cent for total drug spending (Gürsoy, 2016, p. 226). According to Dorlach (2016), the Turkish government adopted a populist rather than a neoliberal pharmaceutical policy as the then-Prime Minister Erdoğan worried that a reduction in the public financing of pharmaceutical consumption could result in a substantial loss of electoral support (72). The fact that the Turkish government provides nearly universal health coverage to its citizens, with declining rates of out-of-pocket spending, has created overuse and over-prescription of drugs. While in 2005, the individual consumption of medicine was 11 boxes per year, it raised to 25 boxes in 2014, with a 100  per cent increase.17 For example, following South Korea, Turkey ranked the second country that uses the most antibiotics in OECD countries: the number of daily antibiotics used per 1000 people is 31  in Turkey, while the OECD average is 18.9.18 A doctor I interviewed explained the upsurge in the consumption of drugs as such: This is a specific case in Turkey. Till recently, there was a regulation in Turkey that doctors could only prescribe five drugs. If the patient needs eight drugs, you need to prescribe eight medications […] But I remember those days that we were telling the patients to come back a few days later so we could prescribe them the other three pills […]. This has created a social reflex in society. For example, after seeing my patient, if I decided that he only needed antibiotics and painkillers, I prescribed them. But then the patient used to ask me, ‘where are my other three medicines that I am legally entitled to?’ According to patients, these drugs are their legal rights. They think 17  https://www.ntv.com.tr/saglik/yilda-25-kutu-ilac-tuketiyoruz,1bRI1e3Vv06zPLn9C 7aOuA. 18  https://www.duvarenglish.com/health-2/2020/02/14/turkey-second-biggest-user-ofantibiotics-among-oecd-countries.

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they have acquired rights to these five drugs and blame the doctors for prescribing only two medications. Then to complete them to five, they asked doctors to prescribe medicines for their babies’ rash problems or their neighbour’s sickness.

In other words, citizenship rights are defined by access to and through the consumption of pharmaceuticals. The Covid-19 pandemic has come to Turkey against the backdrop of this overmedicalization process. With its inexpensive drugs available to everybody, the Turkish government has gained the support of its voters. In return, the citizens who have access to these affordable medicines have strong claims about the pharmaceuticals as their legitimate fundamental rights. At the pandemic’s beginning, an event demonstrates this relationship very well. On 26 April 2020 the Turkish government brought one of its citizens, Emrullah Gülüşken, who was diagnosed with Covid-19, from Sweden after his daughter asked for help on social media. The daughter claimed that her father tested positive for Covid-19 but was allegedly denied treatment by Swedish authorities. After having been diagnosed as a Covid-19 patient in a hospital, the father was sent home, and the daughter asked for help from the Turkish government through social media: The hospital has not sent any drugs, masks, or protective equipment. They have just given him painkillers and told him to have a healthy diet.⁠19

Upon his daughter’s request, Gülüşken was brought to Turkey via an air ambulance. Turkey’s Minister of Health Fahrettin Koca announced that: Turkish authorities would bring the family back. A daughter did something that would be an example to all. Our country took very swift action. Our ambulance aircraft got the patient from Sweden this morning […]. We have cured over 25,000 patients, and Gülüşken will also recover. (Koca, 2020b)20 19  The italics are mine. https://www.aa.com.tr/en/europe/turkey-repatriates-coronaviruspatient-from-sweden/1819102. 20  Upon the accusations, the Consulate General of Sweden published a statement on 26 April. ‘Everyone who seeks medical attention in Sweden with symptoms of COVID-19 is medically assessed at a hospital or other healthcare facility. The vast majority of those with COVID-19 do not require hospital treatment, and some are cared for at home to avoid spreading the virus in hospitals as far as possible. Those who need hospital treatment receive it, and those who are seriously ill receive intensive care’. https://www.swedenabroad.se/es/ embajada/turkey-istanbul/current/news/in-sweden-everyone-is-entitled-to-the-samehealth-and-medical-care/.

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In fact, the situation was not that the father was denied treatment in Sweden because there was no medical cure for Covid-19. Yet, with its generous supply of drugs, the Turkish government was portraying a picture of offering healthcare for everybody, but this didn’t necessarily mean that the medicated patients were actually treated. Through a ‘magic bullet’, HCQ, the Turkish government has equated the right to health with the right to pharmaceuticals.21

Legitimacy and Pills My patients have had a hard time understanding this. They asked me, ‘Am I not going to have any drugs?’ And I was like, no, you won’t. Because you are young, you don’t have any substantial health problems […] The patients were all asking me, ‘if I don’t take these drugs, will I get worse after five days?’ And I was answering, ‘there is no difference in the patients’ health conditions who take and don’t take medicine after five days. So why are you going to take it?’ Some patients were overly nervous that they were not taking these pills, so in the end, I told them, ‘go ahead and have the pills’.

As the doctor I interviewed lucidly explained, some Covid-19 patients believed (or hoped) that they would be recovered after having taken the pills. Over the years, citizens have also embraced the mass drug administration in the healthcare system. The overuse and over-prescription of drugs are taken for granted by the people. In this environment, the existence of medicines for Covid-19, even though patients don’t necessarily have faith in them, has created some sort of ‘relief’: I didn’t take HCQ. My doctor friend told me not to take it. She said it has no effect; moreover, has side effects. And then there was so much criticism about it. Doctors stopped prescribing it […] For Favipiravir, there are also some criticisms now, but back then, I took it since my doctor friend wanted me to be on the safe side. She told me it was not sure that the [Favipiravir] pills would work, but there was still some possibility [of healing]. Thus, in the end, I took Favipiravir after discussing it with my doctor and friends. I would not have automatically accepted the pills as the government asked us to do. These pills [Favipiravir] helped me a lot to fix my psychology. ‘I now have pills; nothing is gonna happen to me’ was the thought I had. Even 21  This is very similar to what Biehl (2007) coins as the ‘pharmaceuticalization’ of public health—to treat diseases pharmaceutically rather than to prevent them through public health measures.

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though maybe they had only a placebo effect, I felt at ease after taking the pills. But for HCQ, I had zero doubts. I would not have taken them.

Not necessarily do the citizens trust the decisions of rulers or their health policy regarding Covid-19 drugs. Since they were readily available, ‘dropped at their door’, the patients took the drugs of the sheer uncertainty and unknowns about the virus, and pills seemed to be the only way to offer some sort of feeling of control over the disease. A middle-aged female informant explained to me how both her daughters and she got sick, and at first, they did not take the pills handed by filyasyon ekibi. They kept self-monitoring themselves, and when one of the daughters having asthma got worse, she started taking HCQ, but the other daughter left the pills halfway when she felt better. They had become the main actors in monitoring and managing their health risks before taking the drugs. Since there were no complete solutions to Covid-19, individual beliefs, habits, and everyday life experiences have become the primary factors in decision-making (Tulloch & Lupton, 2003). Without exception, all the informants I interviewed researched the efficacy of the drug before they took them: either through their relatives and acquaintances who had used it before them or through other scientific sources, such as healthcare professionals or websites. Two young men living together in an apartment who have heavily passed Covid-19 also stated that they had taken the pills after having consulted their friends: I was not going to use the pills at first. I asked a few people before. I asked a pharmacist friend, who told me I could use it if I were terrible. I was feeling pretty awful, and, in the end, I decided to take it not to get worse. In the end, I am not sure to what extent the pills worked for me.

To be on the safe side, these informants performed risk assessments beforehand and decided to take the pills according to their current health conditions. Only one person, a young graduate student I interviewed, told me that she did not take the pills:22 I already knew there was no treatment. I have already checked the websites of WHO and CDC (Centres for Disease Control and Prevention), which 22  It is pertinent to note here that this person has grown up in a different country and has been in Turkey for the last ten years. In the interview, she was also critical of Turkey’s ‘love for antibiotics’.

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stated that there is no treatment. They were saying, quarantine yourself and just rest. I prefer to comply with their instructions.

This informant continued telling me how she was surprised to see that so many people were getting drugs dropped by the government despite the clear statements of the international health announcement that there was no treatment for Covid-19. The mass administration of HCQ was not strongly opposed and questioned in a country where the overuse of pharmaceuticals has become a norm. The free circulation and easy availability of HCQ is a natural extension of the Turkish healthcare system driving medical overuse. There are three different approaches when the responses of the Covid-19 patients are classified: one patient did not take any pills, did her scientific research, directly questioned and rejected the government’s policy to treat the infection by medications; some patients took the pills ‘to be on the safe side’ and build a controlling feeling over the uncertainty created by the Covid-19, and the last group eventually took the pills after making a constant risk assessment of their changing health conditions. Even though the patients’ experiences vary, depending on their underlying health conditions, none of them has automatically taken the pills just because the government administered them. They have all done their research beforehand, consulted others, and made their decisions accordingly.

Conclusion This article has considered whether the Turkish government’s widespread adoption of HCQ has reinforced beliefs in its effectiveness and legitimacy as a treatment of Covid-19 at the grassroots. My ethnographic research has found a complex understanding of legitimacy in terms of how Covid-19 patients react to the government’s policy of HCQ in Turkey. As Pardo (2000) argues, people do not automatically accept as legitimate what is officially legal, nor do they necessarily regard it as morally illegitimate actions that by definition fall outside the strictly defined boundaries of the law. The Turkish government’s presentation of HCQ as effective and necessary for the Covid-19 treatment was an attempt to legitimate the drug and present that the government is well-prepared for a disease with no cure. However, the Turkish government’s attempt to legitimate the use of HCQ in the treatment of Covid-19 did not find support among patients.

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None of the patients has uncritically or unconditionally accepted the drugs handled by the government. The medical policy of the government, as the officially legitimate practice, was not trusted by the public. The patients were sceptical about HCQ and hesitant about taking it. Yet, as my fieldwork illustrates, many patients paradoxically took the pills despite their lack of trust. The consent given to HCQ was ‘very partial and conditional’ (Rosbrook-Thompson, 2019, p. 42). It was partial because the patients were all doubtful about the drug’s efficacy as promoted by the government, and it was conditional because patients were ready to quit the medication as soon as they felt better. The decision to use HCQ has not necessarily emerged from the belief and trust in the government but from the daily life assessments, judgements, habits, and beliefs of patients in their struggle with Covid-19. Hence, this situation has created a discrepancy between practical acceptance and legitimacy; people might accept something even if they don’t see it as legitimate and trust the efficiency of the treatment. As Pardo and Prato (2019) argue, legitimacy is a complex issue; its borders are changing over time along with the changes and expectations of society. My ethnographic research also demonstrates a more complex understanding of legitimacy in terms of how Covid-19 patients react to the government’s policy of HCQ in Turkey. The emergency situation that appeared with the outbreak of the Covid-19 pandemic has made the health policies messier than usual, and the case in Turkey illustrates how new Covid-19 health policies introduced in the country have widely been accepted by the public without having met the legitimacy criteria.

References Armstrong, G., & Rosbrook-Thompson, J. (2022). Interrogating the Public Health Approach: Lessons from the Field of Urban Violence. UrbanitiesJournal of Urban Ethnography, 12(Suppl. 6), 85–91. Arnold, J. (2022). The Poverty of Opportunity and Legitimacy: Where are We Going: Where Have We Been. Urbanities-Journal of Urban Ethnography, 12(Suppl. 6), 46–52. Biehl, J. (2007). Pharmaceuticalization: AIDS Treatment and Global Health Politics. Anthropological Quarterly, 80, 1083–1126. Casarões, G., & Magalhães, D. (2021). Comparative Analysis of COVID-19: Political Leadership, Context, Policy Response. Revista de Administracao Publica, 55(1). Retrieved July 1, 2021, from https://www.scielo.br/j/rap/a/ b3DhgtmpNW8FZMdSNqDY6Ht/

128 

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Charlier, P., Donell, S., Lippi, D., Nerlich, A., Asensi, V., Perciaccante, A., Appenzeller, O., & Bianucci, R. (2020). Hydroxychloroquine to Treat COVID-19 Infected Patients: Some Lessons from Medical Anthropology and History of Medicine. Ethics, Medicine and Public Health, 15, 2–5. Dole, C. (2012). Healing Secular Life: Loss and Devotion in Modern Turkey. University of Pennsylvania Press. Dorlach, T. (2016). AKP between Populism and Neoliberalism: Lessons from Pharmaceutical Policy. New Perspectives on Turkey, 56, 55–83. Ecks, S. (2008). Three Propositions for Evidence-based Medical Anthropology. Journal of the Royal Anthropological Institute, 14, S77–S92. Epstein, S. G. (2009). Beyond the Standard Human. In M. Lampland & S. L. Star (Eds.), Standards and Their Stories: How Quantifying, Classifying, and Formalizing Practices Shape Everyday Life. Cornell University Press. Gautret, P., Lagier, J. C., Parola, P., Hoang, V. T., Meddeb, L., Mailhe, M., Doudier, B., Courjon, J., Giordanengo, V., Vieira, V. E., Tissot Dupont, H., Honoré, S., Colson, P., Chabrière, E., La Scola, B., Rolain, J. M., Brouqui, P., & Raoult, D. (2020). Hydroxychloroquine and Azithromycin as a Treatment of COVID-19: Results of an Open-Label Non-Randomized Clinical Trial. International Journal of Antimicrobial Agents, 56(1), 105949. Grens, K. (2020). Journal Publisher Concerned over Hydroxychloroquine Study. Retrieved July 1, 2021, from https://www.the-­scientist.com/news-­opinion/ journal-­publisher-­concerned-­over-­hydroxychloroquine-­study-­67405 Gürsoy, K. (2016). An Analysis of Public Pharmaceutical Policy, Pricing and Spending in Turkey. Journal of Social Security, 6(1), 225–243. Kayaalp, E., & Isik, I.  B. (2020). Covid-19 and Healthcare Infrastructure in Turkey. Medical Anthropology Quarterly, 30(3). Retrieved July 1, 2021, from http://medanthroquarterly.org/?p=542 Koca, F. (2020a, April 26). Türkiye tedavide farklı bir yaklaşıma sahip [Turkey has a Different Approach to Treatment]. Twitter. Retrieved July 1, 2021, from https://twitter.com/drfahrettinkoca/status/1250318172957208576 Koca, F. (2020b, April 15). Bir kız evlat, COVID-19 hastası babası için hiçbirimizin unutamayacağı bir şey yaptı. [A Daughter did Something that Would Be an Example to All]. Twitter. Retrieved July 1, 2021, from https://twitter. com/drfahrettinkoca/status/1254349419509579776 Lambert, H. (2006). Accounting for EBM: Notions of Evidence in Medicine. Social Science & Medicine, 6, 2633–2645. Lambert, M.  J. (2013). Outcome in Psychotherapy: The Past and Important Advances. Psychotherapy, 50(1), 42–51. Lasco, G. (2020). Medical Populism and the Covid-19 Pandemic. Global Public Health, 15(10), 1417–1429. Mollica, M. (2022). Managing Public Health in a Fragile Consociation: Lebanon Between Wars, Explosions and Pandemic. Urbanities-Journal of Urban Ethnography, 12(Suppl. 6), 78–84.

6  COVID-19 PANDEMIC, HYDROXYCHLOROQUINE, AND HEALTHCARE… 

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Mucchielli, L. (2020). Behind the French Controversy over the Medical Treatment of Covid-19: The Role of the Drug Industry. Journal of Sociology, 56(4), 736–744. Pardo, I. (2000). Morals of Legitimacy: Interplay Between Responsibility, Morality and Trust. In I.  Pardo (Ed.), Morals of Legitimacy: Between Agency and System. Berghahn. Pardo, I., & Prato, G. B. (2011). Introduction: Disconnected Governance and the Crisis of Legitimacy. In I. Pardo & G. B. Prato (Eds.), Citizenship and the Legitimacy of Governance: Anthropology in the Mediterranean Region. Routledge. Pardo, I., & Prato, G. B. (2019). Ethnographies of Legitimacy: Methodological and Theoretical Insights. In I. Pardo & G. B. Prato (Eds.), Legitimacy: Ethnographic and Theoretical Insights. Palgrave Macmillan. Pearson, H. (2021). How COVID Broke the Evidence Pipeline. Nature, 593, 182–185. Petryna, A. (2002). Life Exposed: Biological Citizens After Chernobyl. Princeton University Press. Prato, G.  B. (2018). Dynamics of Legitimacy: Formal and Informal Contexts. Urbanities-Journal of Urban Ethnography, 8(Suppl. 1), 9–15. Prato, G. B. (2022). Healthcare Ethics in Urban Europe: Between Charity and National Welfare. Urbanities-Journal of Urban Ethnography, 12(Suppl. 6), 8–15. Prato, G. B., & Pardo, I. (2013). Urban Anthropology. Urbanities-Journal of Urban Ethnography, 3(2), 82–110. Rosbrook-Thompson, J. (2019). Legitimacy, Urban Violence and the Public Health Approach. Urbanities-Journal of Urban Ethnography, 8(Suppl. 2), 37–44. Shore, C., & Wright, S. (1999). Audit Culture and Anthropology: Neo-Liberalism in British Higher Education. The Journal of the Royal Anthropological Institute, 5(4), 557–575. Strathern, M. (2000). Audit Cultures: Anthropological Studies in Accountability, Ethics and the Academy. Routledge. Tang, W., Khalili, L., Giles, J., Gartshteyn, Y., Kapoor, T., Guo, C., Chen, T., Theodore, D., & Askanase, A. (2021). The Rise and Fall of Hydroxychloroquine with the COVID-19 Pandemic: Narrative Review of Selected Data. Rheumatology and Therapy, 8(2), 681–691. Tulloch, J., & Lupton, D. (2003). Risk and Everyday Life. SAGE.

CHAPTER 7

Negotiating Power over Human Bodies: Populism, People and the Politics of Health in Delhi Subhadra Mitra Channa

Introduction Following upon, the nuanced and intricate discursive spaces created by Pardo and Prato through a series of closely sequenced publications (2012; 2019, 2021) interrogate the concepts of legitimacy enjoyed by power holders in the modern democracies; in this chapter, I foreground the political scenario in contemporary India. Chatterjee (2011: 8) has cited the philosopher Ian Hacking, who distinguishes between two meanings of “norm”: the first in the general sense of what is right and good, and the other in the statistical sense of what is the most commonly occurring and accepted state of affairs in a particular region or culture. As Chatterjee explains, most political regimes tend to pay heed to the latter, to take action, not just according to the first sense of what is right but to apply the rule of “norm-exception”—to take care of the ground realities. The power

S. M. Channa (*) University of Delhi, New Delhi, India © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 I. Pardo, G. Prato (eds.), The Legitimacy of Healthcare and Public Health, Palgrave Studies in Urban Anthropology, https://doi.org/10.1007/978-3-031-25592-2_7

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of the “norm-exception” is widely operative to accommodate “co-­ cultural” conditions between the ruler and the ruled and also to “establish a working relationship between formal law and people’s cultural requirements” (Pardo & Prato, 2019: 2). As we shall see, in a complex political entity like India, ground level cultural complexities intervene between any easy relationship between power centres and the people; even if it is a regime based on populist support. The first part of the chapter condenses some of the issues related to populism, legitimacy and historically derived social complexities, especially the strategic use of “norm exceptions” to selectively marginalise and prosecute some sections of society and promote the interests of those who concur with the power centre. The second part that is based upon my personal experiences of the Covid-19 pandemic as it affected the city of Delhi explores how a crisis creates fresh questions of legitimacy, as the accepted premises for granting legitimacy crumble and shatter under the impact of death and devastation.

Legitimacy of the Ruler In the Hindu cosmology, the right to rule is circumscribed by several moral and ethical norms. Hinduism as it is known today had its genesis in South Asia that has seen the rise of kingdoms from pre-historic times. The Harappan civilisation (Thapar, 2002: 80) is among one of the most ancient in the world (c.2600–1750BC), and there are some evidences of it being an established centralised state. The virtues of the ideal ruler are epitomised in the ancient texts of India, especially the Ramayana, that is enacted as a play in North India as Ramlila (Van der Veer, 1988: 4), attended by large crowds and serving as a key scenario (Ortner, 1973), providing a script for ideal behaviour for members of society.1 The king above everything else has to be just, fair and non-partisan and is also answerable to each one of his subjects irrespective of their social status or identity. Altekar (1958: 231–233) mentions on the basis of his study of the classical Vedas, that in the Vedic period the king’s powers were limited, and till the late  The Ramayana has many version, the original being considered as that written by Valmiki, a mythological saint. But the version that is popularly read in North India, in the Hindu-­ speaking belt, is the one written by the Saint Poet Tulsidas, who wrote in Khariboli, the language of the masses. 1

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Vedic period the power was considerably curtailed by a council comprising of priests, commanders of the army, the treasurer, village leaders and the crowned queen. The king, even if mighty, was secondary in ritual and even political importance to their Brahmin teachers (Gurus) who, like the legendary Chanakya, the guru of Chandragupta Maurya, wielded supreme authority, even above the emperor (Thapar, 2002: 120). The Hindu worldview considered moral authority as superior to political and economic authority. Unlike Egypt and other civilisations, even Christian ones, Hindu kings do not have memorials in their honour. It is the king’s duty is to make temples and places for public use; he must not eulogise himself. In contemporary times, with the transition to a democratic republic, the general public is yet to grasp fully the meaning of a state. As Mathur (2016: 22) points out, the vernacular term, sarkar that stands for both government and the state in India, has a polysemic character, and “is best understood as an intimate repository of state power” and is used to refer to the state at the centre, to a person seen as representing the state, like an administrative officer, or “anyone who is a figure of authority or is seen to wield power, legitimately or illegitimately” (ibid.). Thus, whenever Indians wish, they can use the term to refer in abstract to the state or to a person, and as we shall see, it is increasingly getting attached to a persona. The present right-wing regime of the Bharatiya Janata Party (hereby referred to as the BJP) came to power, professing to model itself on ancient Hindu traditions and glory as a religious nationalism (Thapar, 2002: 21). Ram Rajya as the ideal kingdom and Rama as the ideal king are tropes frequently used by the politicians in India. Seeking legitimacy in the “glorious traditions” of Hinduism, Mr Narendra Modi regularly broadcasts a programme called Mann ki Baat (Heart Talk), where he professes to have a heart-to-heart talk with the people, like for example, he would talk to the students before their examinations, giving advice like a “father”. All the national channels are required compulsorily to broadcast it, and the prime minister assumes a paternalistic attitude and expressions when he engages in this talk. With no personal contact, it remains a one-sided affair. Legitimacy in the form of popular support given by the undifferentiated masses to the present right-wing regime is driven by multiple factors. Firstly, the disillusionment with the previous government led by the Congress Party, mired in corruption scandals and the continuance of a

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dynastic rule, going over three generations.2 Secondly, the lack of any charismatic leader to represent the party considering the reluctance of the Indian people to accept mixed blood Rahul Gandhi as an Indian leader, and lastly and quite importantly, the assumption of an overtly anti-Muslim stand that makes an appeal to large numbers of Hindus. The BJP covertly supports an antagonistic ideology to the Constitution of India, even though as elected rulers, they are expected to honour it. Following India’s Independence, the legal-jural framework of the country was the handiwork of secular, cosmopolitan leaders, largely socialist in ideology, having the goal of establishing an equalitarian state based on social justice and human rights. B.R. Ambedkar, the well-known Dalit leader, who began his political life as a trade union leader, was the key voice in the framing of the Constitution. Nehru, the first prime minister of India, believed in a secular India, where governance will follow the Western rational-legal model—something that was out of tune with most Indians, who draw primary identity from their religion and caste. It is not unsurprising then that the model of a secular, democratic country has been intercepted by a Hindu Nationalism, that raised its head during the colonial period, fuelled and nurtured by the race science introduced by the British, especially the Aryan myth and the racialisation of caste (Thapar, 2002; Channa, 2004). However, it took more than 60 years after India’s Independence for the Hindu nationalists to finally establish themselves in power. Like other populist regimes it made use of “empty signifiers” that stoked emotions and were expressed in rhetoric, driven by faith superseding logic and having high motivational value (Geertz, 1972), like a Ram temple, built on the site of a demolished mosque and statues of Hindu leaders built on the land of displaced tribes. These overt symbols acted as a cover for more insidious activities like persecuting minorities and marginal communities. It is here that the question of the clash between the legal and the moral, the legal and the legitimate (Pardo & Prato, 2019), became glaringly manifest, as also the application 2  Sonia Gandhi, the Italian-born wife of Mr Rajiv Gandhi, a former Prime Minister, heads the Congress now and she has designated her son Rahul Gandhi as the Prime Ministerial candidate if the Congress Party comes to power. Rajiv Gandhi was the son of Indira Gandhi, also prime minister of India and daughter of Jawaharlal Nehru, the first prime minister. This would make Rahul Gandhi, the fourth generation of the same family to be at the helm. This, apart from his mixed ancestry and lack of personal charisma, makes him quite unpopular with the masses.

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of what Chatterjee (2011) has called the rule of “norm exception”. One may also refer to Pardo and Prato’s remark (2021: 8) that “those who consider themselves morally superior, easily cross into fanaticism”. Within little time of its establishment as the ruling power, the right-wing regime began to set its agenda in place, as the new establishment directed itself towards what it projected as the “people’s will” as against mere rule of law. The rewards given to those who had supported the Hindu nationalists provide a classic case of the tension between liberalism and communitarianism (Chatterjee, 2011: 190) in which non-Western nations have critiqued the Western notion of individualism and individual rights as against the moral and social value of the community based in traditional identities. Whether it is morally right and ethical to support one’s own faith and proclaim the nation as belonging to a majority community or to profess faith in more universalistic principles of universal justice and equality for all; is one of the paradoxes of legitimacy that can be interpreted from a variety of locations. Each side is ready with their own point of view and arguments and also commitment to a cause; of parochialised faith or universalistic principles of social justice. For the defenders of the first point of view, the universalistic principles are borrowed from Western individualism and led to, “lack of regard for social obligations, mutual dependence, and the solidarity of the social whole” (Chatterjee, 2011: 194). They cast their arguments in terms of pride and identity, and as explained by Laclau (1977: 167), “popular traditions are far from being arbitrary and they cannot be modified at will. They are the residue of a unique and irreducible historical experience and, as such, constitute a more solid durable structure of meanings than the social structure itself”. All forms of discrimination invent their own logicality for existence as well as “supporting evidence”, irrespective of their truth status. In India, it is common to stereotype Muslims as outsiders and invaders, and this label is used by the right-wing to gather the Hindus against the “other”. The flexibility of morals and their situatedness is explained by Chatterjee (2011: 5) with the example of the debate in the British Parliament (1781–1792) regarding the conduct of Warren Hastings, charged with corruption and crime as the governor of India, who said in his defence that “India could not be ruled by British principles”, thereby implying that morality cannot be essentialised and frozen, but needs to be flexible in accordance with the situation. Very similar principles are adopted by the politicians in India for their own people as well. The Hindu concept of Dharma too is situational.

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Populism and the BJP Regime While the term “populist” remains contested, the BJP rule at present may intuitively be called a populist regime, touching upon Laclau’s (1987 [1977]) description of “the people” as against any class or definite structural arrangement. “‘Popular traditions’ constitute the complex of traits which express the people/‘power block’ contradiction as distinct from a class contradiction” (Laclau, 1977: 167). In this sense the Hindutva movement shows ideological affinity to populism in that it showed “hostility to the status quo, mistrust of traditional politicians, appeal to the people and not to classes and anti-­intellectualism” (Laclau, 1977: 147). In the course of doing fieldwork in the rural areas adjoining Delhi, in the Northern Hindi-speaking belt, I found evidence of extensive propaganda through distorted versions of history, mostly discrediting Muslim saints and historical figures belonging to the Congress Party. A process of demonising and eulogising selectively is being carried on by making changes to school and college curricula. More importantly as pointed out by Appadurai (2021: 308), the state is now the decisive body to define who is a citizen, irrespective of birth or nationality, and it is this identity that determines the rights and privileges to which individuals can aspire. Yet, once in the position of legalised authority, a formal establishment like an elected government has to follow the rule of law. This becomes possible only through the judiciary itself. This has been a typical line of action of populist regimes, as they come to power, as they have to project their “illegal” actions as “legal”, here problematising the legal/illegal dichotomy considerably. As Laclau (1977: 174) has explained when a dominant class (like upper-caste Hindus in this case) comes to power through a populist movement, they try to keep the popular interpellations in the form of antagonism and not just of difference. As the regime put it, the laws of the land were made keeping in mind a secular India, where religion was not part of governance. But addressing itself to “popular” sentiments, and foregrounding the ideal of a Hindu nationalism, the legality of the earlier regime based on an unbiased and objective legal system was seen as “morally wrong” for it favoured the “Other”, the minorities now demonised and shown to be “undeserving” of legal protection, showing up the gap between the “legal and the moral” (Pardo & Prato, 2019, 2021: 5; Shatkin & Vidyarthi, 2012: 13).

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The present-day populist movement also grew out of what Di Tella (1970) describes as the gap between rising aspirations and the lack of resources for their fulfilment, as is expected in a Third World, still developing, country like India. The last government, the Congress party that had power even since the establishment of the Indian nation in 1947, lost its legitimacy in the eyes of the people, as it failed to fulfil the aspirations of the people, inflated exponentially with the neo-liberalisation of the economy in 1992. Prosperity for a few was counterposed by increasing frustrations for many as few people were able to live up to their dreams triggered by the consumer goods from the global arena flooding the markets. The right-wing populist movement partly succeeded in addressing these frustrations by the creation of the demonised “others”, the Muslims, who were having too many children (putting pressure on available resources), uneducated (so not contributing to nation-building), culturally regressive (embarrassment to a modernising nation) and so on. To them were added the indigenous people who were sitting on “national resources” like mines and mineral wealth and the lower castes (SC), who took away the jobs from the deserving upper castes through reservations. The “rational” objectives such as issues of corruption in public places, too much control by the state over free trade (reducing profits for entrepreneurs), faulty implementation of good policies and family-oriented politicians were put forward for the more “enlightened” public. In its efforts to establish its credentials as a “regular” government, a semblance of social justice and overall welfare was made part of the public agenda of so-called development that most often translates into corporate interests (Kapferer & Hobart, 2012: 7). Initially, the efforts were made to play down the religious and divisive elements and health and well-being were identified as goals that would cater to practically everyone. Among the various catchy slogans distributed for consumption to the general public, one was “Sab ka Saath, Sabka Vikas”, meaning, “we want everyone to work together for everyone’s development”; Banega Swasth India, meaning “India will become healthy”. A strongly projected Swatch Bharat Abhiyan, “The Clean India Campaign”, was launched with great intensity and a part of it was a movement to get rid of open defecation in India, seen as a major health hazard but more so as a blight on the “shining” image that was hoped for projection outside, to showcase India as like a first-­ world country. But the actual policy and its implementation fell short of each other. While in some places, the government’s policy of making free or subsidised toilets worked, in some others, like in Rajasthan where I did

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fieldwork in 2016, it fell far below the mark (Channa, 2019). When the publicity campaign for “Clean India” began, the “wash hands frequently” and “observe cleanliness” slogans were criticised by many as being inapplicable to people with limited access to potable water. Many said that if there is no drinking water, how can people wash their hands frequently or flush their toilets? Here the separation of the citizen from population is clearly evident in the sense given by Chatterjee (2011: 198), “the citizen who carries the ethical connotations of participation in the sovereignty of the state, the concept of population makes available to government functionaries, a set of rationally manipulable instrument for reaching large sections of the inhabitants of a country as the target of their policies”. There is also a moral aspect to lack of hygiene and cleanliness, where people are more concerned with ritual purity than with physical cleanliness. Alley (2002: 37) has made the distinction Indians make with respect to “unclean” and “impure”, using the vernacular terms, gandagi/asvacchta and asudhhata/apavitra, with the latter having more importance than the former. Most conservative Indians are more concerned with pure than with clean, like people’s belief that Ganga water purifies everything and any dirt, even dead bodies thrown in it becomes purified (Alley, 2002: 79). Here the meaning of “purity” means the soul of the dead person can reach its proper destiny. Driven by such values hundreds of dead bodies of Covid victims were thrown into the river Ganga in April–May 2021, at the peak of the pandemic. As I have shown in my earlier work (Channa, 2018), city life in Delhi, as in other cities in India, follows a morality and cultural sense that does not concur with “cosmopolitanism” or citizenship as understood in some Western contexts (Shatkin & Vidyarthi, 2012: 13). Laclau (1977: 147) quotes from Germani (1960), who identified populism as the likely to occur in a society making the transition from one stage of economic development to another. The transition that India is undergoing is the struggle to assert its place as a superpower, or a near equivalent of a first-world country. But it does suffer from the asynchronism that Germani talks about, the co-existence of elements from different era, like pre-capitalist feature with very modern ones. A very typical example given in India is of computers being delivered in bullock carts. There is also the more excruciating co-existence of enormous prosperity with the most abysmal poverty. The process of asynchronism is expressed through mobilisation and integration, while the former leads to changes in groups and earlier passive elements to push towards change, integration happens when the regime’s

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framework is legitimised by these transforming or mobile groups. For example, the educated cosmopolitans and the Indian diaspora accepted the BJP, giving it legitimacy and support, even when it overtly went against the law at times. But there are still many sections from which legitimisation of the present regime is not forthcoming, such as the non-Hindus, the indigenous peoples and the lower castes of Hindu society, as well as the disillusioned academics and intellectuals, the traders and business classes and now large sections of a public devastated by a pandemic. As explained by Germani (Laclau, 1977: 150), these “national-­popular” movements combine elements of diverse political ideologies, like the Hindutva movement combines the neo-liberal corporate ambitions of economic growth, a flourishing market economy with consumer asceticism, a drive towards self-sufficiency in all fields, like science and technology, economy and political dominance with the traditional values of being obedient and following prescriptive actions as dictated by the patriarchal father, the head of the nation. The personal ambition of the prime minister is to be the leader of a powerful first-world nation, a nation that is not a receiver of aid but a giver, which is not waiting for aid but is self-sufficient, a producer and exporter rather than an importer. He recently gave the slogan of Atmanirbhar Bharat (Self-Sufficient India), to encourage the indigenous development of drugs and vaccines to combat the pandemic. However, given the fragmented and unequal development of Indian society, the lack of even basic resources for a majority, the high aspirations of the regime were unrealistic and to make them happen, there have been at times coercive actions. But it was these tensions that came to the fore when disaster struck the world.

The Pandemic and Its Aftermath In the beginning of the pandemic, in February 2020, India was among those nations that quickly announced a lockdown, even before the cases had crossed into three figures. However, the first lockdown was announced characteristically dictatorially, when in an 8 p.m. announcement over radio and television, it was announced that the lockdown will become effective by midnight. There was panic buying and stores opened beyond their usual times to accommodate buyers wanting to stock up on essentials. But this was all about the affluents, no attention was paid to the marginal and poor, the daily wage workers, the migrant labour and those employed

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informally in the places of shutdown, like shops, restaurants, malls, gyms and cab drivers and pavement-sellers. In other words, the workers in the informal sector of the economy were conveniently forgotten, although they were among the most ardent supporters of this populist regime. There was, in the first stage, a deliberate attempt to demonise the Muslim community very much in line with Donald Trump’s attempts to demonise the Chinese. There was a congregation of about 3000 international delegates to an annual congregation of the Tablighi Jamaat, an Islamic organisation with a large global following and having a presence in one of the better place locations in New Delhi, within a stone’s throw of a police station. This happened in March 2020, when the lockdown was already in place, but still the police made no attempts to stop them or disperse the crowd of attendees to the conference. But after the event large numbers of them were hounded by the police and put in hospitals when found Covid-positive, several members succumbed to the disease. However, in spite of huge media coverage about such “criminal” activities, where most people put the blame of spread of pandemic in the first phase solidly on the Muslims, the first phase went away relatively easily with much less damage than expected. By January 2021, the government was flushed with pride at having “dealt with” the virus in admirable terms, and there were many self-­ congratulatory messages from the prime minister to the people. There were several public celebrations, like congratulating the front-line workers by everyone being asked to come to their balconies or rooftops (during the lockdown) and beating brass plates, gongs and blowing of conch shells, at another instance, flowers were rained from army helicopters. The prime minister would come on television and ask people to join collectively in these activities, to show solidarity with each other to fight the pandemic. The first phase was marked more by the sufferings due to the lockdown than by the disease itself. Globally, the visuals of hundreds of people walking on foot in the heat and dust of the Indian summer, trying to get back home, went viral on all media. The migrant issue was the real issue at that period, much more serious than the virus. It is reported that more than 8000 migrant workers, desperate to get home were mowed down by trains, as they walked along the train tracks so as not to lose their way in their hundreds of miles trek to their villages. These were all the workers, who had come to Delhi, to earn a living, coming from far-flung areas, less prosperous, and having very little resources as compared to the city. At another place (Channa, 2019) I have discussed under what

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conditions, the poor and marginal are forced to leave their villages (and small towns) to migrate to the cities. There was a total lack of awareness and sensitivity to the fate of the marginal workers, who live a day-to-day existence. These included the daily wage labour and informal-sector workers with no job security, no savings, no permanent roof over their heads and no insurance of any kind. The fate of these workers showed the blind spot that exists in the vision of the state, with respect to those that do not belong to the formal organised sector of the economy, the ones not accorded the status of what Appadurai (2021: 308) calls “statizens”. They exist on the fringes of society without any rights whatsoever. To make amends, the state responded by passing formal legislature such as no one could be evicted from their premises during the lockdown or that employers must pay wages; but there was no way to implement them, especially at the lowest level. The failure of the state to protect the interests of the most vulnerable is also linked to the limited capacity of such people for political action. Thousands of people faced death due to starvation, fatigue and accidents on the roads, but they went without protest. Several issues, hidden till then about the failure of the state and those in power to help the needy and the marginalised, came to the forefront during this period. There was the existing glaring difference in availability of resources and opportunities between the favoured big cities and the marginalised rural areas and backward regions of the country, where the existence of caste values and feudal ideals, keep entire sections of people, mostly of lower caste and class, perpetually on the edge of survival (Channa, 2019). Paradoxically, many of them were ardent supporters of the present regime, lured by the promise of “development” and collective upliftment, Sabka Saath, Sabka Vikas (Everyone together, everyone getting developed) kind of slogans that inspired hope among a large number of people. It was, however, the deadly second phase of the pandemic, caused by the regimes’ self-assertion and tendency to take credit for its “stupendous work”, during the first phase, that shook the faith of the people and questions were raised about the legitimacy of the state that could make such monumental blunders. It is reported that between January 2021 and February 2021, India exported through donation and sale, 60  million doses of the indigenously produced vaccines, also gifted and otherwise distributed life-saving medicines to the needy countries, notably its neighbours Bangladesh, Sri Lanka and Afghanistan, and also to friendly countries like Brazil and Syria. India has a well-developed industrial infrastructure

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for the production of vaccines and medicines, and it produces very large amounts of medicines through these private and public companies. The prime minister took full credit for his generosity, diplomacy and the soldering of international relations. He projected India as having successfully dealt with the pandemic, internally as well as helping out others who were in need, externally. This was supposed to have been an image booster that would catapult the prime minister to the status of a global leader, something that fanned his ego tremendously. It was hoped it would also provide legitimacy to the regime to continue its rule for posterity. By January 2021, things had begun to look normal, and many of the migrant workers came back, the economy was getting back in shape, the stock markets were rising and people were getting hopeful. But by March 2021, there was a complete turnaround of events. India developed a double mutant variety of the virus, now named as the Delta variant. It produced symptoms that were different from the earlier variety, it was far more contagious and it struck more people in the younger age group. The first phase had seen very few young deaths, but the second phase began to wipe out generations of family members. April 2021 saw numerous deaths caused by lack of oxygen supply in premier hospitals of the city, at times leading to the death of fifty to sixty patients at the same time, as oxygen supply ran dry. There were no medicines available and vials of much-needed injections like Remdesvir were selling at a premium of thousands time over their actual price. Hospitals had to shut their gates due to a lack of beds and people died while waiting in ambulances or just waiting in their cars or on the roads. The rush at the cremation grounds was such that bodies had to queue up for disposal, and sometimes relatives had to wait for more than twelve hours for cremation. People were shocked beyond belief to be told that large numbers of bodies had been thrown into the River Ganga3 by desperate relatives who could not afford to cremate them as price of wood and all other material required for death rituals had begun to skyrocket. In other words, things had descended into chaos. This shook up the power lobby at the centre, and after the initial euphoria of having successfully dealt with the virus, there was silence for a

3  Throwing dead bodies into the Ganga, when proper rituals cannot be performed is an age-old practice, as the river, considered as a goddess, is supposed to purify anything that is thrown in it. People float the dead bodies of their relatives in the Ganga, in the hope that they will attain salvation.

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while from the centre. Even the Mann ki Baat (heart-to-heart talks) were not being aired. The pandemic was intensified as a result of the massive election campaigns, as well as the Kumbh Mela, a major Hindu festival held in Haridwar. Both events were super spreaders, yet no one seemed to care. Some local leaders at Haridwar even went public by saying that Mother Ganga will protect the believers and nothing will happen, but it did. Many of the participants in the Kumbh Mela fell sick and a few religious leaders succumbed to Covid. Thereafter the religious congregations left the Mela site voluntarily and the general public followed soon after leaving the banks of the Ganga deserted. In this instance practical good sense prevailed and the actions were defended as for general good. It must be mentioned here that the concept of Dharma in Hindu philosophy is a highly flexible and malleable concept. It refers to appropriate action, and appropriateness is conditioned by a large number of factors, including situational ones. Citing situational contingency, the religious leaders left the Kumbh Mela as the right thing to do at the right time. But by that time a lot of damage had already been done, and as the people returned to their villages and towns, they brought back the virus with them. But there was no blame at this time. Unlike the demonisation of the Tablighi Jamaat, where about 3000 people had congregated, an assembly of 150,000 people, performing rituals and bathing on the banks of the river with practically no precautions, was not proclaimed as a super spreader; in fact, most news channels and media kept a total silence over the issue. The second super spreader was the elections, where even the home minister, ultimately morally responsible for handling the pandemic, went about addressing large gatherings, again running into several hundreds of thousand people, without any attempt at maintaining social distancing or even Covid protocols. All the states, West Bengal, Kerala and Tamil Nadu, descended into chaos with intensified spread of the virus, even though the BJP lost decisively in all these states. By mid-April a large part of the country, including Delhi, had collapsed into complete despair. People died because of lack of oxygen, they died because they could not get a bed in a hospital, they died because of lack of medicines and also because they were being sold at exorbitant rates in the shadow market of illegal trade. People had no other enemy to turn to, except the state and that too mostly the anger was directed towards the centre, for breach of promises, the inability to assess the future of the virus and ignoring advice from the knowledgeable sources. I was a part of this

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shocked Delhi and lost near and dear ones to the virus. What I am talking about is from my personal experience and not based on data or statistics. We lived through a nightmare, dreading every day as it came and the bad news that it brought. People died all around me, siblings, friends, young and old; it was a dark period, never to be forgotten, about people who went away, to whom no goodbye could be done, funerals that could not be attended, hospitals that could not be visited. I also experienced personally the lack of medicines, oxygen and hospital facilities while desperately looking for them for my sister who succumbed to the virus. The resentment was towards the lack of foresight on part of the power holders to anticipate the second wave that also turned out far more deadly than the first. The head of the virology advisory committee resigned on the grounds that his repeated advice was ignored by those making decisions. This resignation was not broadcast on most of Indian media, except a few, and on international television only. The government, instead of trying to mitigate the situation, engaged in a game of covering up and reverse propaganda, trying to put the blame on the states, especially where there was a non-BJP government. But much of it misfired. By January 2021, India had its own vaccine manufactured indigenously, yet miscalculations by the centre cost a large number of people their lives. This particular lack of judgement on part of the leaders brought down their legitimacy in the eyes of the people. Even according to the Hindu worldview, the ruler is like a parent to his/her people. They should be caring for the lives and welfare of the people who depend on them. A serious breach of this occurred when the state decided to earn a name for itself, when it allowed large amounts of resources, much needed in the country itself, to move to the outside. This is one instance where trust was lost, as most people were hit where it hurt the most, the loss of loved ones. The centre then also made a bad calculation, when it asked the states to make their own arrangement for the vaccine, and the various chief ministers (heads of the states) found that there was no way they could get the vaccine, directly from the manufacturers. They also made it a point to come on media to loudly proclaim that they are trying hard but not getting vaccine, and several of the chief ministers floated global tenders for the same with no results. Earlier the central government had to eat humble pie when they were forced to import large quantities of oxygen and medicines, in spite of having bragged about India being self-sufficient in all these resources. The death tolls were abnormally high, most distressing being the death of large numbers of medical professionals including senior

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doctors of high repute, and many prominent public figures, politicians, musicians, artists, film actors and media persons. The issues of legitimacy and accountability came to the forefront in a big way. The Supreme Court of India took on the central government on many issues, especially about shirking responsibility regarding the vaccine. They asked them point blank that instead of making empty promises, they should come out in the open with their substantive plans about how they will go about doing what they are promising, namely that everyone will be vaccinated by the year-end of 2021. Finally, under a lot of pressure, on 5 June 2021, the prime minister came on television and radio to proclaim that India is importing large doses of vaccine and 75 per cent of these will be available free of cost to be administered by the states, free to the citizens. Twenty-five per cent of these will be given to private hospitals but with a cap on their cost, to be given to those who wish to pay for the vaccine and get it in the comfort of a more luxurious environment. In the earlier phase of the vaccination, when it was administered to the sixty-plus age group and also to those above forty-five years of age, the cost at private hospitals was capped at a very low subsidised rate of 250 rupees per dosage. But now when it was going to be meant for all above eighteen years of age, the price was raised and also was different for different vaccines. Questions have been raised as to the differential treatment for the different age groups, but it is logical according to the state, that they cannot afford to give vaccines, either free or at highly subsidised rates to all its population, so at least some of them will have to pay. As rightly pointed out by Pardo and Prato (2019: 6), when power begins to lose authority, it turns to authoritarianism, and is effectively disguised in a democracy. This government too played a great deal of politics by first denying the vaccine to the states that were not BJP ruled and when put under the scanner by the Supreme Court, cleverly disguising their role by saying that although the bulk of the vaccines will be administered free of cost, they will be entirely bought and distributed to the states by the centre. Here they absolve themselves by asserting that they are the ones who will provide vaccines but at the same time they retain complete control over its distribution that has raised much doubts in the minds of the common citizens. Ultimately, the vaccination programme has proven to be a success and, by the beginning of 2022, the third wave of the virus did not show many casualties and the government heaved a sigh of relief. Consequently, the ruling party has done well in the elections held in March 2022. The public

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has a short memory, and much of the trauma is getting over as the economy is picking up steadily. The markets are open and most people are back in their jobs. Indians are by nature resilient and accepting and most reconciled to their loss as destiny.

To Conclude: How Legitimate Is the Present Regime? And for Whom? In several essays, Pardo is of the opinion that legitimacy has a dynamic nature and cannot be separated from the ongoing social processes of which it is only a part or a reflection. Prior to the pandemic, the right-wing BJP government had staked its legitimacy on the basis of “faith” over “rationality” and religion above equalitarianism. It advocated both upper-caste supremacy and patriarchy, under the garb of following Hindu dharma and a Hindu nationalism, based on identity and self-pride. But it managed to disguise its overly partisan attitude by showcasing paradigms such as “development” and removal of corruption. There has been a lot of emphasis on technology, innovation, science and its applications, like efforts were made to move from paperwork to digital data storage and management. However, although apparently very transparent and rational, these transformations hit and were probably meant to hit the poor and the marginal. People with no education and appropriate skills were asked to manage everything online, like registering for the vaccine shots. Those with no internet facilities or even continued supply of electricity in their houses could not cope with applications and all work to be done online. The state was obviously driven by a corporate and pro-upper-class agenda, but it was disguised under progress, development and removal of corruption. But with the pandemic, the scenario changed considerably. The virus cut across case, class, religion and all other social divisions, so it became impossible to have a hidden agenda that would be pro-upper caste and class and also be effective in controlling the pandemic. Although in the first phase there were attempts to shift the blame onto the category of “others”, such as the Muslims, such machinations failed completely when the pandemic hit a peak and affected a very large proportion of the population. It was no longer something that happens to others, it was something that was happening to practically everyone, very close to their own bodies and of their loved ones. Legitimacy could not be derived from ideological rhetoric or from empty signifiers, people were expecting concrete action.

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The initial phase also saw dramatics like banging on brass plates and showering of flowers, but by the time the body count had piled up and people were finding it difficult to even bury or cremate their own, such gimmicks no longer provoked any interest. Further, with frayed tempers over patients dying without proper help, lack of infrastructure and harassment, there were many cases of assaults on doctors and staff of hospitals, as grieving relatives accused them of negligence. In retaliation, the Indian Medical Association called for a nation-wide protest on 16 June 2021. The medical fraternity was already irked by attacks on it by the Yoga Guru and Ayurveda specialist, Baba Ramdev, a person much patronised by the BJP government, that had been showcasing the Indian systems of medicine, for quite some time (Channa, 2004). While the Organisation for Economic Co-operation and Development (OECD) (Pardo & Prato, 2019: 2) had identified four major parameters for identifying the legitimacy of a state, the third, namely, “shared beliefs” that presumes common beliefs, religion and charismatic leadership as leading to a “shared political community” of the ruler and ruled; requires some deliberation. Although the BJP had built up its claims to legitimacy on primarily these factors, including foregrounding the charismatic leadership of Narendra Modi, the “sharing” of worldview is problematic in a vastly heterogeneous country like India. Let alone the co-existence of several major religions, and a number of indigenous, particularistic worldviews; Hinduism itself, being a non-doctrinal religion, has numerous manifestations, some of which are quite contrary to each other. The particular variety of Brahmanical upper caste and patriarchal Hinduism is supported by only some of those who call themselves Hindu. There are many who believe differently and do not concur with all that is being projected as Hindu, including treating non-Hindus as “Others”. The last point of “legitimacy”, namely the international acceptance or legitimation of a regime, although very well managed by the prime minister, finally backfired, when he faced flak for having thoughtlessly exported (gifted and sold) very large quantities of vaccines and medicines, just before the second wave, that left the country practically paralysed. Added to it were the accusations of fudged data about death by Covid, many outside sources, like The Economist, claiming that the actual figures were many times higher (The Statesman, 2021, June 13, p. 1). But there was self-assessment also, like the discovery by the local administration of the issue of nearly 100,000 fake Covid certificates during the Kumbh Mela (1–30 April 2021), in Haridwar, Rishikesh and adjoining areas. There had already been

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considerable contestation with respect to the status of this Mela as a super-­ spreader event. With reference to the first two parameters set by the OECD, it was the faulty implementations rather than the policies themselves that led to the conditions of dissatisfaction regarding the legitimacy of governance. The ground seems set for the people to lose trust in the government they had elected with a great deal of fanfare, but since a democracy is a game of numbers, the relative numbers of such supporters and their detractors will become clear only at the time of the elections. One concurs with Pardo and Prato (2021: 8) that ordinary people are not to be fooled or taken for granted, and that “their action over time may help to redefine relations of dependence and competition” and as Scott (1985) had described long ago, daily life or ordinary people is marked by strategies and minute actions, that can with cumulative effect, overturn major power structures, depriving them of their legitimacy to rule. Time has shown that the ruling party managed to get over the crises and has reclaimed its legitimacy to a large extent. But again, the story is not closed and as time goes on, new narratives may emerge.

References Alley, K. D. (2002). On the Banks of the Ganga: When Wastewater meets a Sacred River. University of Michigan Press. Altekar, A. S. (1958). Vedic Society. In The Cultural Heritage of India (Vol. 1). The Ramakrishna Mission Institute of Culture. Appadurai, A. (2021). How to Kill a Democracy. Social Anthropology, 29(2), 303–309. Channa, M. S. (2018). “Being Urban” in the Context of Global Urbanization: The Case of India. Diogenes (n.251–252). In I.  Pardo, G.  B. Prato, & W.  Kaltenbacher (Eds.), Special Issue on Placing Urban Anthropology (pp. 1–8). Sage. Channa, M. S. (2004). The Re-emergence of Traditional Medicines and Health Care in Post-Colonial India and National Identity. In A. Bicker, P. Sillitoe, & J.  Pottier (Eds.), Investigating Local Knowledge: New Directions, New Approaches. Ashgate. Channa, M. S. (2019). The Thirsty Village. Social Change, 49(4), 590–604. Chatterjee, P. (2011). Lineages of Political Society, Delhi: Permanent Black. Outside South Asia by Columbia University Press. Di Tella, T. (1970). Populism and Reform in Latin America. In C. Veliz (Ed.), Obstacles to Change in Latin America. The Royal Institute of International Affairs, Oxford University.

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Geertz, C. (1972). ‘Religion as a Cultural System’ In Clifford Geertz (ed.), The Interpretation of Cultures. New York: Basic Books. Germani, G. (1960). Politicay Sociedad en una Epoca de Transicion. Paidos. Kapferer, B., & Hobart, A. (2012). Introduction: Forces in the Production of the State. In B. Kapferer & A. Hobart (Eds.), Contesting the State. Sean Kingston Publishing. Laclau, E. (1977). Politics and Ideology in Marxist Theory. Verso. Mathur, N. (2016). Paper Tiger: Law, Bureaucracy and the Developmental State in Himalayan India. Cambridge University Press. Ortner, S. B. (1973). ‘On Key Symbols’. American Anthropologist, 75(5) 1338–1346. Pardo, I. (2012). Exercising Power Without Authority: Powerful Elite Implode in Urban Italy. In I.  Pardo & G.  B. Prato (Eds.), Anthropology in the City: Methodology and Theory. Routledge. Pardo, I., & Prato, G. B. (2019). Ethnographies of Legitimacy: Methodological and Theoretical Insights. In I. Pardo & G. B. Prato (Eds.), Legitimacy: Ethnographic and Theoretical Insights. Palgrave Macmillan. Pardo, I., & Prato, G. B. (2021). Querying Urban Inequalities. In I. Pardo & G. B. Prato (Eds.), Urban Inequalities: Ethnographically Informed Reflections. Palgrave Macmillan. Scott, J.  C. (1985). Weapons of the Weak: Everyday Forms of Peasant Resistance. Yale University Press. Shatkin, G., & Vidyarthi, S. (2012). Introduction: Contesting the Indian City: Global Visions and Politics of the Local. In G. Shatkin (Ed.), Contesting the Indian City. Wiley Blackwell. Thapar, R. (2002). The Penguin History of Early India, From the Origins to AD 1300. Penguin. The Sunday Statesman. (2021). Centre Slams Report on “Excess” Covid-19 Deaths. The Sunday Statesman, 13 June. Van der Veer, P. (1988). Gods on Earth: The Management of Religious Experience and Identity in a North-Indian Pilgrim Centre. Athlone Press.

CHAPTER 8

The Poverty of Opportunity: Where Are We Going; Where Have We Been Judy Arnold

This chapter examines the experiences of Americans seeking health care during the Covid-19 pandemic, particularly those finding themselves still sick from the effects of the virus in cases of Long Covid, also called Long Haul Covid. What are the implications of this condition post-pandemic, particularly for those who are still suffering from the lingering effects of the Covid virus but also for health care in general? On 6 January 2021, the U.S. Capitol was attacked in a riot by a crowd questioning the legitimacy of the 2020 presidential election. It was no accident that this riot occurred after a long period of shutdowns and arguments concerning the legitimacy of the Covid virus itself and the governmental response. The country is so divided that the citizens cannot agree on the facts. Some even question whether or not the riot was a riot or if the pandemic was really a pandemic. Anti-maskers/vaxers question the legitimacy of the government recommendations for social distancing, mask requirements, and vaccinations. The medical community was accused of lying about Covid statistics. Some

J. Arnold (*) Pellissippi State Community College, Knoxville, TN, USA © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 I. Pardo, G. Prato (eds.), The Legitimacy of Healthcare and Public Health, Palgrave Studies in Urban Anthropology, https://doi.org/10.1007/978-3-031-25592-2_8

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families, whose family members died in the hospital, denied that Covid was the actual cause of death because they believed Covid to be a hoax. There were even reports of hospitalized patients denying the accuracy of the Covid diagnosis for which they were hospitalized. In the meantime, the medical community was overwhelmed by the number of Covid patients and was floundering in finding appropriate treatments. Social media became so vicious with so much misinformation that the “former guy”, Trump, who had at one point suggested ingesting bleach to treat Covid, was banned from Twitter, and Facebook began monitoring “fake news”. The American political divide is so broad that legitimacy has become a question for all issues, particularly health care. Covid-19 and subsequently Long Covid have intensified questions of legitimacy at the centre of anthropological debate (Pardo & Prato, 2019) with claims that the government and the media created the hoax in order to control its citizens. Protesters cite the Constitution claiming that government mandates designed to protect the citizenry are illegal.

History Repeats Itself The loss of family members in their prime affects a family, a community, and a nation for generations. A look back at the 1918 flu epidemic shows that issues such as masking and social distancing fostered questions about legitimacy that were as controversial then as they are now (Pardo & Prato, 2019). In a 2021 article in the American Journal of Public Health, the authors draw the following parallels to the 1918 epidemic and the Covid-19 pandemic: “In 1918, as in 2020, mortality was higher in the poor, in African Americans and Native Americans, in health care workers, and in workers in crowded occupations. These patterns, observed for most infectious diseases, reflect societal inequalities and inadequate occupational safety measures” (Morens et al., 2021). These patterns also cause questions of legitimacy as Americans in both the 1918 and the 2020 pandemics questioned not only the right of the government to try to mandate safety measures but also the legitimacy of overburdened scientific and medical communities as they struggled to find treatments for new viruses and their subsequent variations. One glaring example in history of citizens defying the legitimacy of the recommendations of the government and the medical community occurred in what came to be called the “Deadliest Parade in America”. In 1918, against the advice of doctors and the federal government, the city

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of Philadelphia held a parade, led by John Phillip Sousa, promoting government World War I war bonds. More than 200,000 Philadelphians attended the parade causing one of the largest outbreaks of the Spanish flu in the United States (Davis, 2018). In 2020, protests over mask/vaccine mandates became so widespread that school board meetings, for example, became violent as parents, often led by outside agitators, claimed that school systems had no right to require masks or vaccinations for faculty, staff, and students attending in-person school. Descriptions of long-term symptoms in 1918 sound familiar today: “We were leaden-footed for weeks, to the point where each step meant a determined effort … It also was very difficult to remember any simple thing, even for five minutes”. Survivors described “loss of muscular energy”, “nervous complications”, and periods of apathy and depression, tremors, restlessness, or sleeplessness. Long Haul patients report the same or similar symptoms today. A Long Covid patient tweeted this: “Day 163 post Covid. I managed to walk for 20 minutes without chest pain while keeping my heart rate below 120” (Spinney, 2020).

The American Health Care System Pandemics bring out the best and the worst of us or, as Manos Spyridakis observed (2022), unity and distrust. In America, there are those who do not believe that health care for all is a right or a governmental responsibility. There is a prejudice against people who live in poverty, and the American health care system is no friend to the working poor. Poverty in America is not simply financial. Poverty is a way of life that denies opportunity, including for medical care, to a class of people who live in the land of the American Dream where all of those who work hard enough are supposed to succeed but do not. The effects of Covid-19 on these people have been out of proportion to the general population in the first wave of the infection and the aftermath. To understand the lack of opportunity, it is important to examine the health care system itself, the treatment of the poverty class in previous pandemics, and the experiences of patients who are suffering from residual symptoms of Long Covid and are looking for legitimate treatments. Knowledge and treatment of Long Covid are advancing, but the lower class has little opportunity for diagnosis and care. Therefore, in this study, it was the four middle/upper-class respondents who had diagnoses and the latest medical treatment.

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The American Health Care System is fragmented at best, a patchwork of public and private entities, not universally accessible to all citizens. The majority of insured Americans are covered by private plans through employers. Government-funded Medicare and Medicaid provide health care coverage to the elderly population over 65 and the disabled. The government also funds coverage through the military and through Indian Health Services (Tunstall, 2015). Coverage for these groups has come from hard-fought battles for legislation initiated by those groups themselves, but in America there are always constant battles about who “deserves” coverage with a particular suspicion that the unemployed do not deserve governmental health care because they are lazy and do not want to work. The American taxpayers do not suffer gladly the concept that their tax money might go to the “undeserving”. A February 2021 Gallop/West Health poll indicated that currently one in five U.S. adults, 18% of the population or 46 million people, are not able to pay for quality health care. That same 18% reported skipping needed health care or cutting back on necessities during the first year of the pandemic. The rate of health care unaffordability is higher among Black adults (29%) and Hispanics (21%) (News.Gallop.com, accessed 5/10/2021). It is well-known that health care is the financial “back breaker” for the lower economic class. However, the high costs of health care have even caused middle-class families to lose their homes or to accrue insurmountable financial debt. The problem was addressed by President Clinton, but it was not until the Obama administration passed the Affordable Care Act (ACA) that the federal government was able to expand coverage. The ACA provided opportunities for insuring more people. However, some states refused federal funding for Medicare for political reasons, leaving their citizens with prohibitive insurance premiums. The Trump administration tried to kill the Affordable Health Care Act (Obama Care) but in June 2021, the U.S. Supreme Court made its third and final ruling in favour of keeping the Act intact. Democrats and Republicans are left to work through Congress to change the system either by strengthening ACA or by establishing universal health care. In the meantime, Americans are so divided on the question of coverage that some will not support even beneficial measures that might come from the “wrong” party. The Gallop Poll indicated that over 80% of Americans, regardless of political affiliation, favour setting caps on out-of-pocket costs for prescription drugs and general health care for Medicare recipients and for

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lowering the qualifying age for Medicare from 65 to 60. Sixty per cent of Americans support Medicare for All but the breakdown is 93% of Democrats with only 19% of Republicans in favour. The Biden administration hopes to strengthen the Affordable Care Act itself with statistics showing 59% in favour but with a breakdown of 98% support among Democrats to 15% support among Republicans. The majority of independent voters supported both concepts. In the end, poor Americans who have a catastrophic event such as a heart attack will be treated immediately in the Emergency Room. However, wellness and long-term care for minor illnesses or long-term diseases like cancer or diabetes or Long Covid are virtually unavailable for the poor. Elderly people on Social Security, people with disabilities, Native Americans, and members of the military are the only people in America who have access to free health care. Catastrophic illnesses can cause financial ruin for the middle class and certain death for those in poverty.

Covid-19 and Poverty What effect did this fragmented system of health care have on Americans living in poverty during the Covid-19 crisis? The existing system was difficult to navigate at best during the pandemic but particularly for those living in poverty dealing with insurance issues, transportation issues, lack of health care before the pandemic, job loss, and homelessness. There was difficulty in getting tested for a diagnosis, getting treatment, or getting vaccinated. One University of California study showed that during shutdowns, wealthy areas went from being the most mobile before the pandemic to the least mobile, while the poorest areas went from being the least mobile to the most mobile. The reason for this change was because the wealthy could go home to quarantine, but the poor had to stay out in the world and work to support themselves and their families. Therefore, the poor workers, who were often categorized as essential workers, enabled the wealthy and middle classes to stay home. The authors of the California study also noted that there is an intersection of income and unequal access to information, including issues such as appropriate measures to take to avoid being exposed to the virus such as social distancing. Many poverty class citizens live in conditions where social distancing is impossible. Many do not even understand the value of social distancing. Many question the legitimacy of the government mandates for masking and shutdowns and will listen to the gossip of

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neighbours rather than the Center for Disease Control (CDC) or the World Health Organization (WHO), entities that some citizens scarcely know that exist. Poverty of information is a by-product of poverty of opportunity. Citizens who live in pockets of poverty sometimes do not know how or where to get information and often do not trust “official” information from the government when they are made aware of it. Vaccine reticence has been a recent effect of the poverty of opportunity caused by a lack of information or misinformation in a poverty-stricken community. A further intersection where financial poverty affects information, therefore affecting the poverty of opportunity, is in a prevailing suspicion that Covid is a governmental lie and that vaccines are dangerous experiments. The difficulties brought on by Covid and subsequently Long Haul Covid underscored what was already a poverty of opportunity for the lower classes in America. According to the Center for Disease Control (CDC), “Every community must prepare for and respond to hazardous events, whether a natural disaster like a tornado or disease outbreak, or a human-made event such as a harmful chemical spill. A number of factors, including poverty, lack of access to transportation, and crowded housing may weaken a community’s ability to prevent human suffering and financial loss in a disaster. These factors are known as social vulnerability”. Gabrielle Jackson (2021), author of Pain and Prejudice: How the Medical System Ignores Women, observed: “The universal health care systems in the U.K., Australia and Canada will protect many people. But in the U.S., it’s a different story”. Frances Williams, professor of genomic epidemiology at King’s College London, one of the developers of the Covid Symptom Tracker app, has reported that at least initially, while more men have died of Covid-19, women are slightly more likely to suffer long-term aftereffects. (Think newsletter, NBC News). Social vulnerability is amplified for women, particularly young women, and poor women who were often questioned about the legitimacy of their symptoms by employers and medical practitioners.

The Long Hauler Search for Diagnosis and Treatment Long Covid has become an important medical concern. What happens post-pandemic, particularly to those who are still suffering from lingering Covid effects but also for health care in general? Medical practitioners

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have seemed surprised and, at least initially, unable to diagnose or treat Long Covid. However, one group of medical practitioners was not surprised. Homeopaths say that all viruses from 1918 to the present have residual effects. They prescribe the same treatment for Long Haul Covid patients that they prescribe for all patients who have residual symptoms after recovering from any virus (homeopath personal conversation). Unfortunately, homeopathic treatment is expensive, not covered by insurance. People in poverty not only are unable to pay for homeopathic care but also do not have the opportunity to be educated about such care and would have an inherent distrust in the care. The poverty of opportunity is underscored by a related poverty of information. Long Covid is defined as “not recovering [for] several weeks or months following the start of symptoms that were suggestive of Covid, whether you were tested or not” (Spinney, 2020). This study identified six female respondents with definite or suspected Long Haul Covid diagnoses. At the time of the study (Spring-Summer 2021), sufferers from this condition were hard to identify. Therefore, the experiences of these respondents are important in showing the complexities of searching for answers from an already beleaguered health care system, taxed to the limit by the pandemic and politics. It is as difficult to find legitimate care now for a new illness as it was in 1918. It is particularly difficult for poor people; as indicated in the mainstream literature (Pardo & Prato, 2019), the poverty of opportunity for health care is a glaring issue of legitimacy. In the Winter of 2022, the experiences of two more respondents with diagnosed serious cases of Long Covid were added to the study. These respondents were not living in complete poverty but two were poor. There is a difference in being poor and being poverty stricken in America. The experiences of the original six participants plus the two more recent respondents highlight the difficulty and frustration involved in obtaining diagnosis and care for Long Covid for all classes. Five of the original respondents currently live in Knoxville, Tennessee. The sixth respondent is a native Knoxvillian currently living in San Francisco, California. The two additional respondents live in Knoxville. All of the interviewees were healthy and active before contracting Covid. Some were athletes. A predominant theme that emerged from all of the interviews was loss of activity. The respondents missed their former active lives emphasizing that the primary, perhaps the only universal, symptom of Long Covid is debilitating fatigue. Another common theme was shock, even PTSD, at getting over Covid only to have it return,

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usually with worse symptoms than before: “Why am I still sick? When is this illness going to stop?” Finally, the most important common theme, the need for a firm diagnosis, came with these questions: “Why can’t the doctors tell me what is wrong with me? I will do anything I need to do— just tell me what to do. I don’t care how hard I have to work—what do I need to do?” It was not until the Biden administration took office that organized research was sponsored by the government. Most of the work in the field was by doctors suffering from Long Haul Covid themselves. Grassroots groups flourished, particularly online as sufferers banded together to try to learn from each other. It was easier to trust a fellow sufferer than to trust the floundering medical community. The interviewees’ responses show great difficulties in dealing with Covid from the beginning of their illness through their current situations with Long Covid. Another universal issue is that patients with Long Covid tend to have recovered, completely from the original illness, only to have it return with a wide variety of symptoms later. Often, the original illness was comparatively mild. None of the original six respondents in this study were hospitalized. Given the fact that these respondents did have the luxury of medical care and some sort of diagnosis, it is apparent that a study should be done on people in poverty who have not had the same opportunities. Identifying these people will be easier in the future. Without the original diagnosis, Long Covid sufferers have had difficulty in getting treatment and in becoming involved in research studies. The most affluent participant in this study (Respondent 1) and her husband caught Covid-19 in San Francisco, California in the early days of the pandemic, March 2020, when diagnosis and treatment were in its earliest stages. San Francisco was the first city in the United States to implement shutdown orders during the pandemic. As a couple each of them had been extremely careful not to be exposed to the virus and initially they had no idea when or where they were exposed. In hindsight, however, the wife worked in a public relations firm with offices in China and when some of the employees returned from a business trip in China to the San Francisco office around November of 1919, several complained of lingering colds with coughs that persisted into the New Year. The couple’s respective cases were not mild but not severe enough for hospitalization. Their friends left remedies ranging from elderberry to Tylenol at the apartment door long before they were able to get medical help. Once they were able to get tested, their symptoms had started to abate, and their tests were actually negative. Because of the shutdown in San

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Francisco, they were only able to get medical appointments by telecommuting. There were doctors in the family, including an emergency room doctor in New York City who was treating Covid patients during the worst of Covid’s attack on New York. He confirmed that their symptoms were in line with a Covid diagnosis as did the doctors in San Francisco with whom they were finally able to obtain teleconference appointments. By the time they received these diagnoses, they had suffered through the worst of the illness with their only treatments being supplied by friends who recommended medications such as DayQuil and NyQuil to combat symptoms plus daily medical checks of oxygen levels and temperatures. After suffering with the virus for approximately one month, both recovered, or so it seemed. In the fall of 2020, the virus came back to strike the wife with a vengeance. Her chief symptom was a frightening neurological issue—a tingling in her hands which caused her to be unable to use her hands very well. She had to use two hands to brush her teeth, for instance. She could not use her hands on the computer. Her job had already been cut back to less than half-time because of the pandemic, but her doctor put her on full disability because she was unable to work. The next neurological symptom showed up in her legs, starting with the tingling, and then moving to what she and other Long Haul Covid patients have described as “heavy legs”. Exercise was out of the question for this formerly active athlete. The next symptom was a debilitating fatigue, one almost universal symptom for long haulers. This long-­distance runner found herself unable to walk a block in her neighbourhood. She developed other symptoms such as shortness of breath and a racing heart. She was told by her doctors not to exercise at all, although she did have physical therapy sessions aimed at helping the condition in her legs. Long Covid symptoms are not particularly universal, often varying from patient to patient. However, the following scenario created by the editor of the Harvard Health Letter, Anthony Komaroff, MD, based on the experiences of his patients, summarizes the experiences of many long haulers: Suppose you are suddenly stricken with Covid-19. You become very ill for several weeks. On awakening every morning, you wonder if this day might be your last. And then you begin to turn the corner. Every day your worst symptoms—the fever, the terrible cough, the breathlessness—get a little better. You are winning, beating a life-threatening disease, and you

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no longer wonder if each day might be your last. In another week or two, you’ll be your old self. But weeks pass, and while the worst symptoms are gone, you’re not your old self—not even close. You can’t meet your responsibilities at home or at work: no energy. Even routine physical exertion, like vacuuming, leaves you feeling exhausted. You ache all over. You’re having trouble concentrating on anything, even watching TV; you’re unusually forgetful; you stumble over simple calculations. Your brain feels like it’s in a fog. Your doctor congratulates you: the virus can no longer be detected in your body. That means you should be feeling fine. But you’re not feeling fine. The doctor suggests that maybe the terrible experience of being ill with Covid-19 has left you a little depressed or experiencing a little PTSD. Maybe some psychiatric treatment would help, since there’s nothing wrong with you physically. You try the treatment, and it doesn’t help. Elements of this scenario were reported by three of the respondents. The San Francisco respondent (1) reported the earliest experience. Her first appointment after the onset of the Long Covid symptoms was with a female practitioner in a walk-in clinic in San Francisco. This physician prescribed muscle relaxants, anxiety meds, and anti-depressants which helped with anxiety but not with physical symptoms. Anxiety and depression are two common issues reported by long haulers, including inability to sleep. This respondent became particularly anxious about her elderly parents, worried that if they caught Covid, they would not survive. After several more appointments with this doctor, the respondent decided to find another doctor after her first doctor ran out of patience and said, “What are you afraid of? That you won’t be able to walk or something?” Since this statement precisely described her fears, she began to seek other medical help. Doctors often treated her with the suspicion that she was just “an hysterical girl”, and she was offended by many of their questions. She had amassed the following specialists, w: a new general practitioner, physical therapist, psychologist, osteopath, heart specialist, lung specialist, a new osteopath/chiropractor/acupuncturist, and homeopath (not covered by insurance). She is on a waitlist for the San Francisco Long Haul clinic. She reported that the physical therapist was initially the most helpful practitioner. Physical therapists observed early on that their Covid survivors had similar neurological symptoms. The general practitioner discovered a low vitamin B12 count and initially treated the illness as a B12 deficiency. B12 shots helped, and the

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symptoms improved. However, it was soon apparent that the deficiency was not the final diagnosis. Was the deficiency already present or was it caused by Covid itself? After time, money, and countless traditional and non-traditional treatments, this respondent is returning to a more normal life, working part-time and exercising some. The next respondent (2), a young Knoxville woman in her late twenties, also reported B12 deficiency with terrible fatigue which made returning to her job as a pre-school teacher exceedingly difficult. This respondent was similar in age to the first one—late 20s/early 30s. She had not entirely recovered at the time of her interview. She also initially had difficulty getting a diagnosis and was relieved when she finally got a diagnosis. Both respondents emphasized the relief in receiving a diagnosis. Respondent (2) also reported initial difficulties with the “hysterical young woman” treatment reported by Respondent (1). Respondent (2)’s chief complaint was a debilitating fatigue coupled with the inability to concentrate and “think straight”. She was trying to work and go to school but found herself having to fight through exhaustion and mental fogginess, often missing work and/or classes. She started treating herself with a wide variety of vitamins which seemed to help until she was finally diagnosed. At the beginning of 2021 only a few major cities such as San Francisco and New York were establishing Long Covid clinics (many of them were started by doctors suffering from Long Covid themselves). Tennessee had no clinics initially. However, by April, Memphis had a clinic followed by Knoxville and Chattanooga. These clinics were part of the University of Tennessee Medical System. Vanderbilt, in Nashville, was also beginning to conduct studies. Consequently, the Knoxville respondent (2) had the benefit of a quicker diagnosis by the medical community which accepted Long Covid as an actual condition. The remaining respondents are also Knoxvillians. One is middle-aged, and the other three are in their 60s and 70s. The middle-aged African American respondent (3) had Covid in December 2020. She had recovered and in mid-January was enthusiastically taking a full-time load of classes at a local community college. She wanted to model for her children and grandchildren that education was important and worth the perseverance required for her to earn an Associate’s degree. Perseverance became particularly important to this respondent because she became extremely ill shortly after mid-term. She reported to her Zoom class from the hospital bed following a colonoscopy. She had some difficulties with that test but

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seemed to rebound. However, shortly thereafter, she received her second vaccination and began having side effects. Within the week following the shot, she became extremely ill. Her symptoms were extreme fatigue; heavy legs (she used the same term and description that the San Francisco respondent reported); difficulty sleeping—she had to sit up in a recliner; she could not sleep in her bed at all. She could not tolerate anything touching her skin and could not tolerate being touched. She had a high temperature. This respondent had difficulty getting a doctor’s appointment. Initially, she was able to talk to the doctor by phone but felt that the doctor did not believe her. After she took the initiative and asked if it was possible that she had Long Covid, her doctor did say that it was “too early to make a diagnosis of Long Covid” but that it was possible. She already had a physical therapist because earlier in the year she had back surgery. Clearly, she had underlying medical conditions that the other respondents did not have. In contrast, the San Francisco respondent (1), an athlete, did have previous sports injuries, but no surgeries and no other issues. Respondent (2) also did not have any underlying conditions. Respondent (3) reported that her fatigue was so bad that when she tried to shop for groceries, she could not. She was unable to cook for her active family and reported bursting into tears for no apparent reason and having waves of depression (common Long Haul symptoms). At the time of the last interview, this respondent (3) had not had a final diagnosis of Long Covid. She did, however, seem to have the worst symptoms of all of the respondents, with the possible exception of Respondent (1). She had some insurance through her husband’s employment. Her family had recently received some insurance money when her mother died and had moved into a new home. Her husband is a blue-collar worker. The second and third respondents knew each other and did compare their Covid situations. The younger woman (Respondent 2) with the official diagnosis stressed the importance of getting a diagnosis. She was hesitant to make suggestions about how to treat Long Covid because, as she pointed out, Long Covid sufferers’ symptoms tended to be so different from patient to patient. She did feel that her infusion of vitamins, particularly B12, was helpful. She pointed out that B12 deficiency was often noted in Long Haulers but that it had not yet been established whether or not Covid specifically caused the deficiency. The San Francisco respondent also stressed the importance of diagnosis, a treatment plan, and physical therapy. She identified grassroots online sites such as https://www.

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wearebodypolitic.com which has over 10,000 members in over 30 countries. Francis Williams, the Kings College Professor, said that “having a label is a big step towards managing it effectively” (Think Newsletter). Both Respondents (1) and (2) reported a certain peace of mind in having a diagnosis with some better ideas about how to deal with their illnesses. Respondents (1), (2), and (3) reported responses from medical personnel that indicated gender prejudice. Gabrielle Jackson (2021) reports the similarity of symptoms of Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME) to the symptoms of Long Covid. Like Long Covid, more women than men are diagnosed with these diseases. Also, like Long Covid, medical personnel question the symptoms. Jackson (2021) says this: “CFS/ME is one of 10 overlapping chronic pain conditions that predominantly affect women; all suffer from stigmatization, lack of research and poor treatment offerings”. The worry is that, when these Covid-19 patients present to their health care practitioners complaining of long-term symptoms, they will be written off as anxious, lazy, hypochondriacal, or hysterical. Certainly, the drastic changes health practitioners to put all symptoms—especially those as general as fatigue, poor sleep, “brain fog”, headaches, and muscle pain— down to this stress. While depression and anxiety surely must be considered as part of a diagnosis (and indeed overlap with chronic pain and CFS/ME), it is equally as incumbent on doctors to be alert to CFS/ME and other chronic pain conditions as a possibility. “It’s tough for women because traditionally they don’t get taken as seriously by medical practitioners”, Williams tells me. “Because of the overlap with depression, which undoubtedly exists, some people will put it all down to psychological problems”. “And that of course makes it worse”, she said. “People think, ‘Well, maybe I am going mad?’” And all it requires is someone to sensitively give it a label, give it a diagnosis. Once you’ve got a diagnosis, you know what you’re dealing with. Even if it’s not perfectly clear—there’s no obvious treatment, there’s no drug to prescribe—but having a label is a big step towards managing it effectively. Respondents (1), (2), and (3) reported questioning from their medical professionals which absolutely echoed Jackson’s comments. The remaining Knoxville respondents were over 60, covered by Medicare, and initially had mild cases of Covid. All were active athletes. They reported lingering symptoms, but only one has had a specific diagnosis of Long Covid. This respondent (4) is in her mid-70s and had an

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initial difficult but not terrible case. Knoxville is a much less restrictive city in terms of restrictions than many U.S. cities, and this respondent had returned to fairly normal activities. She owns a business. She plays tennis and had returned to playing—then fatigue hit—then depression hit. She is newly married, and her new husband wants her to close her business. (She probably will not.) He “can’t wait until her sense of humour comes back”. She acknowledges that she has been moody and depressed. She looks forward to not being constantly fatigued. She and all of the older respondents are fully vaccinated. She had hoped that after the second vaccine she would get better since some patients with Long Haul Covid have dramatically improved after the second shot. She had seen no improvement at the time of the last interview. She has had some unsuccessful contact with doctors at the Vanderbilt Covid Clinic in Nashville. Respondent (5) and her husband had mild cases and were surprised by their mild symptoms. Both in their 70s, they reported being careful not to be exposed to the virus, and they did not expect positive test results. This respondent and her husband were the only ones in the group who reported losing their senses of taste and smell. Several months later, they were still having issues with taste and smell. Otherwise, they resumed regular activities without any other long-term symptoms except fatigue. They have visited with their grandchildren and while they are bothered by the taste/ smell issue, they count themselves lucky overall because they knew people who died from Covid. It is interesting to note that loss of taste and smell has been a widely reported Covid symptom. However, respondent (5) is the only one of the groups in this study to refer to the symptom. She talked about the fact that this symptom seems harmless to people who have not suffered from it, but that it is really a troublesome and can linger for a long time. It is also a symptom that doctors cannot predict. There is no treatment for it, and there is no predicting when it will dissipate. Respondent (5) is also an active athlete, not accustomed to being sick. She recognizes that after months of the same symptom, she probably has Long Covid. She has not had a formal diagnosis, however. This respondent is representative of Covid sufferers who have long-term symptoms which are not necessarily severe enough to require diagnosis. She continues everyday life but remarked that it is surprising how much her appetite has been affected by the loss of taste and smell. Respondent (6) reported a relatively mild case also that more resembled a bad cold or allergy than a virus. Her husband is a kidney transplant recipient; she was careful to isolate from him after her diagnosis. She was

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also careful about returning to normal activities, but when she did, she began suffering from vertigo and extreme fatigue. She, like many typical Long Covid sufferers, reports that the symptoms seem to go away and then come back “in waves”. The other respondents in this study have reported that some of their symptoms come and go but that the most prevalent symptoms remain. She is also an athlete who recently was injured in a fall while playing tennis with injuries including a broken nose. However, the injury is not healing well, and she is having difficulty breathing. She is also being treated for hair loss. Her doctor made the first suggestion of Long Covid when she developed this issue.

Being Sick and Poor Four of these respondents are free from financial worries and covered by insurance or Medicare. Two of them are not as secure but were able to get medical help. What about those who live in poverty? For the purpose of this study, it was difficult to find anyone living in poverty who had a Long Covid diagnosis or even recognized symptoms. In America, during the shutdown, poor people did not get to shut down. They often worked in jobs that were deemed essential. They had to work as long as they could because if they did not work, they were in danger of losing their ability to pay for food and housing. The respondents in this study, who had financial means, had issues in getting testing, diagnoses, treatment. People in poverty were faced with lack of opportunity for medical care and for stability. People who worked in grocery stores or who were truck drivers or street cleaners kept working so the middle and upper classes could quarantine. One has to wonder in the aftermath of the pandemic how many poverty-­ stricken sufferers are struggling through symptoms and trying to work and take care of their families without any kind of medical support or how many have collapsed, without treatment, and are part of the current unemployment statistics. It is difficult to determine which was worse for the poor working class: getting sick or losing their job. In the best of times, outside of the pandemic, many Americans choose not to get medical care because of cost. The poverty of opportunity for treatment was even worse during the pandemic with the Emergency Room the only option for patients without insurance. Long food lines became a harrowing image. The poverty of opportunity included people who never thought they would find themselves

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unable to feed their families. A 21 April 2021 broadcast on the American Public Broadcasting System, Critical Care: America vs the World, reported that even before the Covid pandemic, Americans living in poor communities had to make choices about medical care that their neighbours in neighbouring, more wealthy communities did not have to make. People, even with insurance, skip care because of cost. This report speaks of “everyday life choices—live, eat, gas”. Poverty of opportunity is a way of life. ABC News (2020) interviewed a $13.00 an hour health care worker in Texas, a state that did not accept the federal money for Medicare. She received treatment after it was discovered that she had cancer. She lost the use of her left arm and then lost her job and her home. Another woman, from poverty-stricken Harris County, North Houston, Texas said, “Nobody really cares that you are suffering” in a discussion about foregoing care because of cost. The 21 April ABC programme and 4 April PBS News report stressed that disabled people were not prioritized at the state or federal level. There was no special dispensation for this group, often homebound, for Covid vaccinations, for instance. Another issue often forgotten is rural palliative care. For example, the PBS News Report noted that hospital care is unavailable in certain rural areas. The report gave the example of a nurse travelling a long distance to a patient’s home several times a week in order to administer dialysis because there was no hospital treatment available in that area. Doctors at Houston’s St. Mark’s Episcopal Hospital reported statistics showing that people living in their section of Houston, mostly poor, black, and uninsured, die on average 20 years earlier than their neighbours. One of the doctors said that if the people in that area get to the hospital at all, they are really sick and often die from diseases that are preventable. Conversely, doctors in Massachusetts and New Jersey noted that all of their citizens qualify for health care. These states did not turn down federal Medicare money. The unevenness of coverage from one neighbourhood to the next, as in Houston, and from state to state, such as from Texas to New Jersey and Massachusetts is clear. This disparity amplifies the argument for Universal Health Care led by Progressive Democrats such as Bernie Sanders. Sanders emphasizes that America is the only country on earth that does not provide health care for all. Pre-pandemic conditions foreshadowed the uneven care affecting people suffering from Long Covid now, like those in this study. The system will not improve for a very long time—the health care system and the economy are nearly, but not completely, broken. Bad mistakes rarely lead

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to temporary damage and the unevenness of care in America is a difficult barrier to climb. The article “How Social Capital Helps Communities Weather the COVID-19 Pandemic”, by Makridis and Wu (2021), investigates the role of social capital as a mediating factor for the spread of the virus. The authors point out that social capital is associated with greater trust and relationships within a community. Communities that exhibit trust and strong relationships foster a greater concern for others, leading to the types of hygienic practices and social distancing that affect the level and growth rate of infections. The respondents in this study were more dependent, by necessity, on the community, whether it was online sites of fellow sufferers or word of mouth of friends. The only way to address the poverty of opportunity is to build communities of trust and relationships that enable us to trust the medical community and each other.

Economics and the Search for Legitimate Treatment The wealthiest respondent in this study is being treated by a homeopath, an osteopath, a physical therapist, a chiropractor, a psychologist, an acupuncturist, and a general practitioner with additional advice from doctors in the family. Much of this care, particularly homeopathy, would be economically out of reach for those living in poverty. The poorest of the six were trying to return to work while fighting the symptoms and treating themselves. The wealthiest respondent was put on disability by her doctors and received disability payments from the government for over a year. One of the most economically disadvantaged of the group fought the symptoms while trying to return to a demanding job and attend classes, taking self-prescribed vitamins while coping with fatigue and brain fog. Another attempted to go to college and maintain a large household. She spent a great deal of time in a recliner, the only place she could stand to be, crying and feeling guilty because she could not take care of her family. Depression was an integral part of this and other participants’ day-to-day life. Two years after the pandemic began and one year after the interviews with the participants in this study, Long Covid has finally become a legitimately recognized disease. Recognition and treatment for this condition have been problematic because even though previous epidemics have recorded residual effects, the medical community was unprepared. Some Long Covid sufferers have learned in many cases to live with the condition, knowing that they have a disability which they may have to live with in one form or another for the rest of their lives. Some are actually better

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and have been able to continue with their regular lives. Some fight their bodies to return to their former lives. There are now doctors who specialize in treating Long Covid, many of whom are sufferers themselves. There are worldwide support groups that not only support Long Haulers but also lead the way in pushing for research and treatment. The biggest problem with treatment is that while there is a common list of symptoms for the disease, each sufferer seems to have their own individual set of symptoms. In late 2021 and early 2022, the United States made great progress in the fight against Covid: free vaccines; free tests; free masks, for example. During this period government funding was provided for research and treatment, and the medical community gained more insight into the condition. Two more respondents contributed to the study at this time. The first is a middle-aged male nurse who volunteered in March 2020 to work with Covid patients in Texas. He contracted a very serious case of Covid and was hospitalized. When he was able, his wife put him in the backseat of their car and drove him home to Tennessee, a 1000-mile trip. He has not had a normal day since. He suffers from PTSD and various physical symptoms which have made it impossible for him to work. Of all of the respondents, he has reported the most severe case of brain fog, a common complaint among Long Haulers. He and his wife have formed s support group called Team Covid Long Haulers. The group provides information as well as support. His doctor is a Long Covid sufferer himself who has to take frequent rest periods during the day in order to maintain his practice. This respondent has used both traditional and non-traditional treatments. He was formerly a college and professional baseball player and a marathon runner. He is currently unable to participate in physical activities. He uses his work with the support group to give hope to others and himself. The other 2022 respondent is a middle-aged woman university professor who went on disability and had to resign her position because of her severe symptoms including but not limited to brain fog and Postural Orthostatic Tachycardia Syndrome. (POTS). She is part of the Vanderbilt Long Covid Study and has tried various treatments. She stresses that it is often necessary to treat symptoms of Long Covid first rather than the illness itself because the symptoms are serious. She also suffers from severe fatigue. She is a member of the Team Covid Support Group and participates in Podcasts and other events when she can.

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These two respondents have the most severe and long-term cases among the participants. Their Team Covid group is an example of worldwide grassroots organizations formed by Long Haul patients. Two examples of American-based organizations are Survivor Corps and the Covid-19 Long Hauler Advocacy Project. There are also international groups, Facebook groups, chat lines, and other social media connections designed to give grassroots support to Long Haul victims.

Conclusion One hundred years after the 1918 flu pandemic, there are still anecdotal family histories chronicling the loss of family members, either from the flu itself or from the long-term effects of the flu which included either permanent physical damage or even suicide. One hundred years later there is still a worldwide poverty of opportunity for the poor in relation to basic health care, much less care for residual effects like those suffering from Long Covid. Studies by Channa in India (2023) and Kayaalp Jurich (2023) show the universal quest for legitimate care and the argument for the right to become healthy even for those living in poverty. However, studies in America seeking legitimacy in health care in the past and in the present show that America is not really the shining light on the hill, the beacon to show the rest of the world how to live that it once purported itself to be.

References ABC News Broadcast. (2020, April 21). Channa, M. S. (2023). Negotiating Power Over Human Bodies: Populism, People and the Politics of Health in Delhi [Chapter 7]. In I.  Pardo & G.  B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives. Palgrave Macmillan. Critical Care: America vs the World. (2021). Public Broadcasting System. Aired 21 April. Retrieved October 5, 2021, from https://news.gallup.com/ poll/248081/westhealth-­gallup-­us-­healthcare-­cost-­crisis.aspx Davis, K.  C. (2018). Philadelphia Threw a Parade that Gave Thousands of On-lookers the Flu. Smithsonianmag.com, 21 September. Retrieved May 10, 2021, from Gallop/WestHealthPoll.News.Gallop.com Homeopath. (2021, 21 March). Personal Conversation. Jackson, G. (2021). Pain and Prejudice: How the Medical System Ignores Women—And What We Can Do About It. Think Newsletter, 8 March. https://www.nbcnews.com/think/opinion/covid-­l ong-­h aulers-­a re-­ often-­women-­maybe-­it-­ll-­change-­ncna1259686

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Kayaalp Jurich, E. (2023). The Question of Legitimacy: Hydroxychloroquine and Covid 19  in Turkey [Chapter 6]. In I.  Pardo & G.  B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives. Palgrave Macmillan. Makridis, C. A., & Wu, C. (2021). How Social Capital Helps Communities Weather the COVID-19 Pandemic. PLoS One, 16(1), 1–18. Morens, D. M., Taubenberger, J. K., & Fauci, A. (2021). A Centenary Tale of Two Pandemics: The 1918 Influenza Pandemic and COVID-19, Part I. American Journal of Public Health, 111, 1086–1094. Pardo, I., & Prato, G. B. (2019). Ethnographies of Legitimacy: Methodological and Theoretical Insights. In I. Pardo & G. B. Prato (Eds.), Legitimacy: Ethnographic and Theoretical Insights. Palgrave Macmillan. Spinney, L. (2020). What Long Flu Sufferers of the 1918–1919 Pandemic Can Tell Us About Long COVID Today. Time News Ideas, 31 December. https:// time.com/5915616/long-­flu-­1918-­pandemic Spyridakis, M. (2022). Health and People with Disabilities. A Medical Anthropological View. In I.  Pardo and G.  B. Prato (Eds.), Healthcare and Public Health: Questions of Legitimacy. Urbanities-Journal of Urban Ethnography, 12(Suppl. 6), 60–65. Tunstall, L. (2015). Backgrounder: Making Sense of the U.S. Health Care System: A Primer. Evidence Matter, 22 October. https://evidencenetwork.ca/ backgrounder-­making-­sense-­of-­the-­u-­s-­health-­care-­system-­a primer-­2/

CHAPTER 9

The Views of Selected Tennesseans on Universal Health Care as a Right Talbot Rogers

And would it have been worth it, after all, After the cups, the marmalade, the tea, Among the porcelain, among some talk of you and me, Would it have been worthwhile, To have bitten off the matter with a smile To have squeezed the universe into a ball To roll it toward some overwhelming question […]   —T. S. Eliot, from The Love Song of J. Alfred Prufrock (1915)

T. Rogers (*) Walters State Community College, Morristown, TN, USA © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 I. Pardo, G. Prato (eds.), The Legitimacy of Healthcare and Public Health, Palgrave Studies in Urban Anthropology, https://doi.org/10.1007/978-3-031-25592-2_9

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This study involves the analysis of the opinion of five participants as to whether health care in the United States is a right. Health care is not a right in the United States, either legally or in practice. This causes disparities that correspondingly affect the perception of most of the participants as to the overall legitimacy or the health care system. Since this investigation is primarily a qualitative interview study (McCracken, 1988; Spradley, 1980), an important element involved the basic participant responses to the interview question. As Merleau-Ponty said, “The perceived world is the always presupposed foundation of all rationality, all value and all existence” (1964: 13). C.W. Mills wrote in conclusion to his work The Sociological Imagination (1959): “Be a good craftsman. Avoid a rigid set of procedures. Above all seek to develop and use the sociological imagination” (from Bogden & Taylor, 1975: 40). Chaos mathematics is the most recent development in buttressing the case for qualitative research. In his Chaos: Making a New Science, Gleik states: The first chaos theorists, the scientists who set the discipline in motion, shared certain sensibilities. They had an eye for pattern, especially pattern that appeared on different scales at the same time. They feel they are turning back a trend in science toward reductionism, the analysis of systems in terms of their constituent parts. They believe they are looking for the whole. (1987: 5)

I Had a Dream The desire to write this chapter came from a great many experiences the author had over his lifetime as an elementary teacher and university professor. He heard many stories about the lack of medical coverage for those he worked with-reports which were more horrible than would have seemed possible in a wealthy first-world country. Everyone he knew could recite similar accounts, and it was assumed that any selection of participants for this study would overflow with rich recollections of the terrors of health care. It was not so. Instead, their experiences were markedly different from those of the author. The reasons for this disparity will be discussed later in the paper. First, five brief stories about health care in the United States personally experienced by your author.

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Story 1. House and Home My aunt was sent to a rest home while in her early eighties. Her son, who lived in a distant city, realized that the bills for his mother’s care were piling up and that her house and adjoining property would be seized and sold once she passed away. He sold the home and when his mother died, was able to retain the property. I heard stories about forced estate sales many times from other individuals. Though the sale of the homes by the next of kin was awkward and often premature in relation to the interest of the elderly individual, it was the only alternative for many families to losing their inheritance. The practice was slowed somewhat when time limitations were imposed on such sales by the government. Story 2. So Sue Me A visitor to the home of the author slipped on the driveway while it was raining in order to attend a yard sale and broke his leg. He required several surgeries as the break was complicated and he had some preexisting conditions. His bill came to $327,000, of which only $100,000 would be covered by home insurance. The individual involved did not wish to sue, but finally did so when the hospital involved that if he did not do so they would sue him for and force him to sell his farm in order to make payment. He sued, hiring an attorney whose firm advertised on television that they made recoveries for victims such as himself with no upfront charges. In the end, my insurance company paid him only $100,000 and his lawyer claimed $40,000 of that amount. The author later had lunch with this man and he stated that his share of the money was not nearly enough to cover what he owed. Whether or not he lost his farm is not known. Story 3. Bad Teeth A 12-year-old boy in the author’s elementary classroom came from a low-­ income family and had cavities in virtually all of his upper and lower teeth. His appearance was significantly enough altered that he covered his mouth with his hand when speaking. Neither he nor his family had any legal right to financial help to have this problem corrected. The author found a $500 grant to apply to this expense, but it went unused as the boy realized that it would only cover a tiny fraction of what was needed for extensive repairs, and he was frightened that a painful process might thus be prolonged. Nothing was done for his condition for almost two decades.

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Story 4. Brain Tumor While the author was a university professor, he found that one of his most popular students had a terminal brain tumor. The student’s mother accompanied the class on several field trips and had several long conversations with the author regarding her son’s condition. She had no insurance on herself or her son and had gradually exhausted all her cash and assets to pay for medical bills. She had been told that her son would not survive for more than a few years, though there was home should he be able to access some new medical procedure. She had found all the “breaks” the doctors, hospitals, or other organizations could give her, was facing bankruptcy, and could not continue her son’s expensive treatments. Her son, who was seen as an outstanding student, continued in his studies for the next semester when the author was transferred to another university campus. He never learned the fate of the afflicted student. Story 5. Dying Little Girl The author’s mother was in the last stages of terminal cancer, and his family took turns being with her in a hospice center, a place which specialized in caring for terminally ill patients. In the same room with my mother was a little nine-year-old girl who was dying from a fatal illness. Her father was constantly by her bedside, day and night. As the weeks passed, a friendship developed between this man and myself, and we discussed many issues regarding the impending deaths of our loved ones. One day the little girl was not in her bed and her father was absent. The girl had passed away, and so the author decided to write her father a letter of consolation. It was given to the staff to mail but oddly they could not forward it on as they had no valid address for the girl’s father. He had obviously carefully hidden his whereabouts so that he could not be taken to court to pay what would have been an astronomical bill. * * * Five selected participants were interviewed in Knoxville Tennessee (USA) regarding their attitudes toward universal health care as a right. All were habitual patrons of a local McDonald’s and met there regularly for breakfast. They were from a variety of backgrounds fostering a varied set of

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responses to the interview question. All were good communicators and either were retired or had been gainfully employed for a period of several years. Their insights provided both an understanding of their view of the health system in the United States and a glimpse into its ingrained lack of legitimacy in their eyes. This study elaborates on their primary answers with details from scholarly literature. Discussions with the participants took place inside the restaurant at remote tables as there were no more suitable places found due to Covid restrictions. All participants were given pseudonyms and all sessions were recorded. The individuals featured in the study were: “Rico,” is a wealthy retired businessman who did well enough financially to retire over 20 years ago while still in his fifties. Rico moved from his home in New York to retire in Knoxville. He is a skilled communicator both in the usual company at McDonald’s and with strangers. He has reached the age that he receives Medicare, a federal program which covers approximately 80% of individual medical costs. “Douglas,” born in Miami, Florida, is a retired accountant and money manager who lived in Great Britain for several years in his youth. He is exceptionally succinct and demonstrative in his views. He has health coverage which he pays for privately. “Sleepy.” Born in Poughkeepsie, New York, Sleepy moved to Tennessee some years ago. He is a homeless man who spent six years in the U.S. Army but who has drifted in and out of employment since then. He sleeps in a tent behind a nearby church. Sleepy has health coverage which he terms “adequate” from the temp agency which employs him on an intermittent basis. “Tippi,” a retired professional engineer who continued to work in a winery and in a telephone bank for a retail store. She received health care insurance through Obamacare (Affordable Care Act). Tippi recently underwent chemo and radiation treatment for cancer. “Candy,” a worker at McDonald’s who takes responsibility for cleaning the large customer area in the establishment. She has been notable for the thoroughness of her cleaning, spending considerable extra time disinfecting booths because of the Covid epidemic. Candy is a single parent. She has private insurance partially supplied through government agencies but none through her employer.

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Three of the interviewees felt that health care in the United States should be a right. One believed that citizens should have a choice as to whether to have private insurance or universal health care. One believed that health care was not a right and could not become one unless it was enacted as part of the U.S. Constitution. The themes that ran through the interviews were “a legitimate right,” “not a right at all,” and “any legitimate solutions which would lead to universal health care.”

A Legitimate Right? All but one of the participants believed adamantly that health care was a right. Their responses to the question as to whether universal health care should be a right were unequivocal. This concept that health care is a right has been envisioned for many years. The founding documents of the United States provide support for universal health care. Men possess, according to the Declaration of Independence, “inalienable Rights, among these are Life, Liberty and the pursuit of Happiness.” The preamble to the U.S. Constitution states that part of its purpose is to “promote the general welfare.” In 1944, Franklin D.  Roosevelt proposed legislation that included the right to a standard of living adequate for health and well-­ being. The beginning of a worldwide movement for health care was first formally announced worldwide in 1949 by the United Nations in its Universal Declaration of Human Rights. It formally proclaimed that health care was a right and that all nations were obligated to fully promote the physical well-being of their citizens (United Nations World Health Organization, 1949). After this Proclamation, the International Covenant on Economic, Social, and Cultural Rights, containing similar language favoring universal health care, was signed by the United States in 1977. President Bill Clinton attempted to pass a bill during his term in office, but in spite of popular support, it was savaged by negative advertisements paid for by elements of the medical establishment. Mid-term elections swept Republicans into office and the bill failed. Another push toward more citizens having access to health care was made by President Barak Obama in 2010 through the Affordable Care Act (ACA). The act substantially increased the ability of uninsured, underinsured, and uninsurable persons to obtain insurance policies. Shaffer states, “The ACA established universal coverage for health care as a national goal and delineates the disposability of individuals, employers, and the government to contribute to its cost” (Shaffer, 2013: 970). It did not provide universal health care

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but did extend health benefits to many persons who heretofore lacked them. Progress remained incomplete and many millions of the nonelderly population remained without insurance (Woolhandler, 2017). The most recent movement toward universal health coverage came during the 2019 Presidential primary campaign. Senator Bernie Sanders gained considerable support for a “Medicare for All” plank in his platform. Sanders wanted the federal government to take over private health care insurance and replace it with a comprehensive, single-payer program. Under this plan, every U.S. resident would receive access to free medical treatment in almost every category of health care. When Sanders did not receive his party’s nomination, the momentum of this movement was considerably diminished (Freedman, 2020). The struggle continues, and proponents of universal health care cite numerous reasons that it should be implemented. McLaughlin and Leatherman (2003: 136) state: In the USA, studies published in leading professional journals consistently report that people with acute and chronic medical conditions receive only about two-thirds of the health care needed, and at the same time, that 20–30% of interventions are either unnecessary or of questionable benefit.

One major reason for implementation for this circumstance of some form of universal health care is that single-payer care could lower the cost of health in the United States. No country spends more money to cover less of its population than does the United States. Other countries cover their entire population for considerably less. “One reason for the higher cost in the U.S. is the fact that ‘single-payer’ systems, like the one in Canada, and those with multi-payer systems and all-payer systems incorporate procedures for setting rates, including countries like Germany and Switzerland which spend much less per capita than the United States” (Kreier, 2019: 210). Another problem is the overprescription of drugs and services by doctors (Moore, 2007). The price of a dosage of Latuda in the United States at a local pharmacy was found by the author to be $55 per pill (a daily dose). The same dose bought by mail in the same company packaging from Canada cost $1.80. Much of the exorbitant cost of prescription medicine can be attributed to the lack of competitive bidding on drugs in the United States, where in many venues supported by the government, such bidding is illegal. Attempts in Congress to allow such bidding have failed except in the case of the medicines ordered by the

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Department of Veteran’s Affairs. One study in Mali revealed that the lack of competitive bidding and avoidance of generics by the company which had a monopoly on the import and distribution of pharmaceuticals resulted in an overall doubling of prices to the public (Koenig & Diarra, 2023). Surgery and hospital procedures are also outrageously expensive. The participant Douglas was told by his doctors that he needed an in-­ house procedure done to correct problems in his circulatory system. The procedure was completed in six hours and Douglas was able to return home. The bill was over $25,000. This kind of overpricing and corruption was also found prevalent in Italy in a study made by Italo Pardo (2004). One comment made by most participants in this study was that the United States was one of the wealthiest countries in the world and should be able to easily afford health coverage for its people. Many other countries with a much smaller per capita gross national product provide universal coverage. The medical system in the United States even has adverse effects for foreign students studying here (Vakkai et  al., 2020: 765). Another problem is that health insurance is a complicated purchase. These policies are so complicated that ordinary people have given up trying to understand what they are actually entitled to (Prato, 2023). There are hundreds of policies on the market, each with unique benefits designed to attractively market the product rather than to provide understandable benefits to the customer. The purchaser must choose between many policies with different benefits and shortcomings (Persad, 2020). Health insurance itself has risen in price in recent years as have its corresponding deductibles. Forty-three percent of working Americans were living in families which struggle to pay medical bills in 2017 (Mukherjee, 2019). Even asylum seekers have also experienced a significantly deficient standard of health care in the United States (Rubio, 2021). For the uninsured, hospital emergency rooms are providers of last resort and an extremely expensive remedy for the hospitals. Importantly, universal health care might also obviate the huge number of bankruptcies caused by individuals’ inability to pay their medical bills. Estimates are that an astounding 500,000 such bankruptcies are filed each year. Single-payer health care would eliminate this injurious circumstance. It is easy to see that ordinary citizens often must cope with a host of differing problems, wherein the laws which apply to them differ from their own concept of morality or legitimacy. This may cause individuals to judge different circumstances individually on a continual and confusing basis. As they view variegated personal

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medical-related challenges they must make judgments from differing perspectives (Pardo & Prato, 2018).

It Ain’t Necessarily So One participant, Douglas, strongly opposed universal health care as a right. He felt that as it was not a right granted in the Constitution, it was not a right at all. His view has considerable support. The Declaration of Independence does not specifically say that there is a right to health care. The preamble to the U.S. Constitution states that one of its purposes is “to promote the general welfare” but does not mandate that it must be provided. The Bill of Rights lists a number of freedoms that the government cannot curtail but does not provide any goods and services that citizens may receive. An argument presented is that although people need health care, food, and shelter, this does not necessarily obligate others to make such provisions available. Food, for example, is not considered a right; companies are permitted to sell it, and it can be withheld from those who cannot afford it. Opponents also bring up the matter of increased delays in seeing a medical doctor. They present the prospective argument that in Canada, a country with universal health care, the average wait time to see a specialist is almost twice as long as it is in the United States (Canadian Institute, 2016). Another argument against universal health care is that it promotes socialism. This argument centers around the belief that socialism exists when large government programs control major areas of society and thus intrusively control the lives of its citizens. According to President Ronald Reagan, “[…] one of the traditional methods of imposing statism or socialism on a people has been by way of medicine, behind it will come other federal programs that will invade every area of freedom” (Field, 2011). A single-payer system could lower doctors’ salaries over the salaries of doctors in single-payer countries like Canada and England (Knowles, 2018; Locke & Duqueroy, 2018). Finally, one criticism of single-payer health care is that individuals should take personal responsibility for paying for their own health care rather than turning to the government for this service.

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Déjà Vu All Over Again: The Status Quo It appears that, since the adoption of Obamacare, or the Affordable Care Act that little substantial progress has been made in health care. The topic is largely ignored by politicians, and there are few bills even suggested before Congress that would further the country along the road of universal coverage. At present, any major bills would almost certainly be met with the ire of conservatives, some moderates, the insurance industry, and affected facets of the medical community. The public has seen the potential for universal health care come and go for generations and has accustomed itself to a seriously flawed system. Perhaps the worst-case scenario would be the acceptance of corruption by the general populace as observed in a study of one population in Mexico (Olson, 2023).

Conclusions Four of the five participants in this study noted a tension that there was trouble in their nation, even though they personally had health insurance. “We are a rich nation,” said Tippi, “and we should have health insurance for everyone.” These thoughts were echoed by Rico and Sleepy. Oddly, from the perspective of the author, these individuals had no stories of heartbreak and financial ruin to tell. All had found insurance either through employment or through special programs for most of their lives. Perhaps a wider net for a higher n-number of interviewees should have been cast. Still, their lack of nightmare experiences does not mean that the problems have completely diminished—hundreds of thousands of citizens are declaring bankruptcy each year because of their inability to pay medical bills and many millions are still completely uninsured. It should be noted that the United States is not without some forms of government health care. The Social Security program pays about 80% of most medical expenses for those 65 years of age and older. Supplemental insurance can be purchased which covers the remainder and can be deducted from Social Security (retirement) checks. Another program, Medicare, gives support for medical expenses to limited classes of low-­ income persons. Some states have programs to cover portions of their low-income residents. None of these approaches the concept of universal health care coverage. Linking coverage to employment only raises the possibility of a two-tier system and negatively impacts the possibility of universal coverage (Gorin, 1997: 343). There are several plans used in other

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countries that provide universal coverage. Some countries, like Germany, have plans that require the entire population to purchase insurance. Some countries, such as Switzerland, fund their health programs directly through the government, with funding gained through tax revenues. Australia has a dual public/private system in which higher quality care can be purchased through insurance. There are many iterations of these policies throughout the world, though none has taken root in the United States. Sadly, the United States is the only nation among the 37 Organisation for Economic Co-operation and Development (OECD) nations that does not have universal health care, either in practice or by constitutional right (Organization for Economic Cooperation and Development [b]). Gorin and Moniz ask, “What, then, is the future of universal coverage?” (2004: 43). It could be suggested that without significant change in the political environment, incremental reforms offer the best and perhaps the only way of changing our health system. The avenues reform would likely take are: 1. Strengthening the Affordable Care Act. This could ensure all citizens, though it would be more expensive overall as it would be implemented through private insurance plans. 2. Broadening Medicare. Medicare already exists for those 65 years of age and older. The bureaucracy and government framework already exist. This would be close to a single-payer plan, particularly if the agency is allowed to bid on pharmaceuticals and all medical costs. 3. Establish a National Health Service. This would be similar to the process of broadening Medicare, though would have the advantage of designing an agency prepared to deal with the needs of individuals of all ages. 4. Construct a private system designed for universal coverage with the government reimbursing the medical community for its expenses. 5. Establish a two-tier system, offering basic medical care for all and improved health care for individuals willing to pay for this service. It is quite possible that great reform with 100% coverage will not materialize for decades in the U.S. political system. As Michael Moore pointed out in detail in his film Sicko, a staggering number of the members of the U.S.  Congress are receiving contributions for their reelection from the pharmaceutical companies and from organizations representing the interests of medically oriented corporations. These contributions make it nearly impossible to obtain universal health care in the United States. For political reasons the United States has chosen not to do that.

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It is apparent that the United States has been too mired in corporate corruption to make the necessary national reforms. Piecemeal changes have been bitterly opposed by conservatives in Congress and their allies in lobbying organizations. When President George Bush II instituted Part D of Medicare to help lower drug costs, the drug companies lobbied to allow them to establish pharmaceutical prices. Prices naturally remained high. When will it end? Perhaps when a national crisis arises a progressive political block will be able to make major improvements. A national crisis has proven in the past to foster basic changes—after all, Japan and Germany only attained universal health care after the end of World War II. This is a sad way to look for reform. The United States may have reached a disastrous level of corruption with massive debt and expenditures that it will eventually implode financially. At present 23% of all federal revenue goes to pay interest on the national debt and repayment is further constrained by military expenditures (seen as representing somewhere between 35% and 50% of all federal revenues). It would be a sad thing if the United States went the way of Spain in the 1550s when King Philip declared his country bankrupt. This Spanish bankruptcy was due to massive federal overspending both domestically and in excessive military endeavors. Spain did not recover for centuries. A crisis would probably supply the United States with sufficient bipartisan support to establish a universal care system, but at what cost? The battle for universal health care is being continued regardless. The current struggle carries with it the seeds of success in adopting a program which provides for the medical care of all U.S. citizens. “We need to engage fully with the empirical variations of the morality of what is right and of what is fair and can be lived with, as opposed to what is legal, in the face of the realities of management of power as a graded process corresponding to the graded affirmation of the state” (Pardo & Prato, 2019: 20).

References Bogden, R., & Taylor, S. (1975). An Introduction to Qualitative Research Methods. John Wiley & Sons. Canadian Institute for Health Information. (2016). How Canada Compares: Results from the Commonwealth Fund’s 2016 International Health Policy Survey of Adults in 11 Countries. https://www.cihi.ca/en/commonwealth­fund-­survey-­2016

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Field, C. (2011). Ronald Reagan Fought Against Obamacare 50 Years Before It Became Law. Townhall, 4 March. https://townhall.com/tipsheet/chrisfield/2011/03/04/ronald-­r eagan-­f ought-­a gainst-­o bamacare-­5 0-­y ears-­ before-­it-­became-­law-­n683529 Freedman, D. (2020). Is Bernie Sanders Right About Medicare for All? How Government-run Health Care Actually Works. Newsweek, 27 March, 174: 8. Gleik, J. (1987). Chaos: Making a New Science. Penguin. Gorin, S. (1997). Universal Health Care in the United States: Barriers Prospects, and Implications. Health & Social Work, 22(3), 223–230. Gorin, S., & Moniz, C. (2004). Will the United States Ever Have Universal Health Care? Health & Social Work, 29(4), 340–344. Knowles, M. (2018). 29 Statistics on Annual Physician Compensation by Specialty. 11 April. https://www.beckershospitalreview.com/compensation-­issues/29-­ statistics-­on-­annual-­physician-­compensation-­by-­specialty.html Koenig, D., & Diarra, T. (2023). The Fragility of Legitimacy: Access to Health Care in Manantali, Mali [Chapter 4]. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives. Palgrave Macmillan. Kreier, R. (2019). Moral Hazard: It’s the Supply Side, Stupid! World Affairs, 182(2), 205–223. Locke, T., & Duqueroy, V. (2018). UK Doctor’s Salary Report. medscape.com, 3 October. McCracken, G. (1988). The Long Interview. Sage Publications. McLaughlin, V., & Leatherman, S. (2003). Quality or Financing? What Drives Design of the Health Care System? Quality & Safety in Health Care, 12(2), 136–142. Merleau-Ponty, M. (1964). The Primacy of Perception. Northwestern University Press. Mills, C. W. (1959). The Sociological Imagination. Oxford University Press. Moore, M. (2007). Sicko. Michael Moore, Meegan O’Hare. Mukherjee, S. (2019). Health Care Worries. Fortune International (Europe), 179(1). Olson, E. (2023). Health Sovereignty in West-Central Mexico: Legitimacy from the Grassroots [Chapter 11]. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives. Palgrave Macmillan. Pardo, I. (2004). Where it Hurts: An Italian Case of Graded and Stratified Corruption. In I.  Pardo (Ed.), Between Morality and the Law: Corruption, Anthropology and Comparative Society. Routledge. Pardo, I., & Prato, G. B. (2018). Introduction: The Ethnography of Legitimacy and Its Theoretical Ramifications. In I.  Pardo & G.  B. Prato (Eds.), Urban Ethnographers Debate Legitimacy. Urbanities-Journal of Urban Ethnography, 8(Suppl. 1), 1–8.

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Pardo, I., & Prato, G. B. (2019). Ethnographies of Legitimacy: Methodological and Theoretical Insights. In I. Pardo & G. B. Prato (Eds.), Legitimacy: Ethnographical and Theoretical Insights. Palgrave Macmillan. Persad, G. (2020). Choosing Affordable Health Insurance. George Washington Law Review Arguendo, 88(4), 819–889. Prato, G.  B. (2023). Health Inequalities and Ethics of Responsibility: A Comparative Ethnography [Chapter 2]. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives. Palgrave Macmillan. Rubio, J.  L. (2021). Health Care and Sanitation Rights of Asylum Seekers in United States Immigration Detention: How the United States is in Violation of International Human Rights Law and International Norms. Case Western Reserve Journal of International Law, 53(1/2), 329–356. Shaffer, E. R. (2013). The Affordable Care Act: The Value of Systemic Disruption. American Journal of Public Health, 103(6), 969–972. Spradley, J. (1980). Participant Observation. Holt, Rinehart and Winston. United Nations World Health Organization. (1949). The Right to Health. The Right to Health Fact Sheet 31. https://www.ohchr.org/en/publications/fact-­ sheets/fact-­sheet-­no-­31-­right-­health Vakkai, R., Harris, K., Crabbe, J. J., Chaplin, K. S., & Reynolds, M. (2020). Sociocultural Factors That Impact the Health Status, Quality of Life, and Academic Achievement of International Graduate Students. Journal of International Students, 10(3), 758–775. Woolhandler, S. (2017). The Relationship of Health Insurance and Mortality: Is Lack of Insurance Deadly? Annals of Internal Medicine, 167(6), 424–431.

CHAPTER 10

The Biopolitics of Complementary Spiritual Healing in South Korea and Israel Liora Sarfati

In April 2021, I interview Jenn, a Korean shaman (manshin) in her thirties, via Zoom.1 She tells me how she suffered from multiple aches throughout her twenties: My back, knee, and other joints felt constantly painful, and several surgeries failed to bring relief. I was frustrated, depressed, and almost disabled. This began to change when I learned from an experienced manshin that it was all because I was destined to become a manshin myself, and so I began to meet  I use the term South Korea or Korea to refer to the Republic of South Korea. I transliterate Korean words using the McCune-Reischauer system. However, I use shi to guide proper pronunciation. Manshin are Korean traditional healers who practice possession trance to communicate with spirits and gods. The overarching term for Korean shamanism (musok) embraces other practitioners, called sesŭp-mu, who perform similar rituals without possession and who are not believed to embody supernatural entities. 1

L. Sarfati (*) Tel Aviv University, Tel Aviv, Israel e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 I. Pardo, G. Prato (eds.), The Legitimacy of Healthcare and Public Health, Palgrave Studies in Urban Anthropology, https://doi.org/10.1007/978-3-031-25592-2_10

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her [the older manshin] often. Having been raised Catholic, and living in New York, this seemed a very far-fetched prospect for me. My family [from Korea] was heavily against me being initiated.

In another interview I asked her, “Can you imagine a doctor telling a hospitalized patient that he recommends treatment by a manshin?” She chuckles bitterly and says, “It is difficult to even think of it as an option, but I wish it were a possibility”. The Korean name for Jenn’s health problem is shinbyo ̆ng, spirit-inflicted illness, and the symptoms include both the physical—ranging from unexplained bodily pains to cancer—and the psychological—including psychiatrically diagnosed schizophrenia and depression. From the perspective of musok (Korean shamanism), shinbyŏng patients are possessed by spirits. They can be healed only when they are initiated into the role of spiritual healer, after learning to communicate with the supernatural in controlled possession-trance rituals. Most contemporary urban manshin say that they were diagnosed and treated by various conventional doctors for years to no avail and stress that the spiritual healing they underwent was a lifesaving experience. “I was paralyzed for six months, and the doctors did not know what it was”, says Sŏ, recalling her suffering as a teenager. “I could not move my right arm, and any touch on my skin felt like a burn”, says Kim of her days before she was diagnosed with shinbyŏng by a manshin. Similarly, Mrs Yang, the mother of a male manshin, tells me, “I was sure that my son was going to die, with years of headaches that made him want to commit suicide. I am Christian, but could not avoid feeling relieved when his situation improved everytime he met the manshin [the practitioner with whom he began to apprentice].” These patients’ health problems did not go unnoticed by the medical doctors they met, but even after exhaustive tests and lab work, there was no clear diagnosis, and no treatment that could eliminate the symptoms. There are 300,000 practitioners of musok listed in their professional organizations, which means that millions of clients trust them and view their healing as beneficial. Nevertheless, no such healing is offered by scientifically trained medical specialists in Korea or elsewhere, and health care systems that allow patients to choose their medical providers do not include manshin. This is not because musok is illegal in contemporary Korea (though it used to be in some premodern periods), or because it is viewed as harmful to patients’ health. Rather, it is simply not perceived as

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a legitimate medical treatment by the public health system. It is a parallel path to healing, one that most Koreans use at some point in their lives and that is widely practiced even in hypermodern cities, but that has not been incorporated into modern medicine. Should the individual’s right to healthcare be extended to include spiritual folk healers? Most doctors would probably view such a suggestion as mere provocation, but anthropologists, who value the emic views of our interlocutors and avoid judging their phenomenological understanding, we should at least give this idea more serious consideration. Research has already firmly established that religion is not dying out in hypermodern social conditions. Around the world, an updated Christianity remains highly influential, Islam has gained new strength, pagan spirituality is widespread—and religious healing is still tightly bound up with the manner in which many view their health. Acceptance of liminal, religious healers has been observed worldwide, including within Catholicism, as attested by Pardo (1996, 118–124). Paradoxically, as in other cases of ritual and the sacred, “that which is excluded from the community is, in reality, that on which the entire life of the community is founded, and it is assumed by society as the immemorial, yet memorable, past” (McLoughlin, 2010, 7). Thus, many premodern, vernacular health practices have persisted. Indeed, in most contemporary urban societies, health problems are treated not just by industrially produced chemicals and medical interventions performed in modern hospitals, but also by traditional religious healers. Nevertheless, these two sets of methods do not rest on the same cultural footing and are not perceived as commensurate in the hierarchy of accepted healing methods. This is not because all modern medical treatments succeed and all traditional healing practices fail. Rather, it is related to the politics of knowledge production and control of the means to maintain what Giorgio Agamben calls the “bare life” of people within a society (1998; 2000). The politics of meaning carries no less weight in medical discourse than the need to keep people alive. As Agamben explains, in most hypermodern societies, the governing elites decide what is included or excluded from public systems, including the system of health services. We can easily guess where traditional spiritual healing falls within this structure. Most Koreans, including spiritual healers and their clients, accept that, because of its religious origins, spiritual healing is a private matter, outside the legitimate medical discourse. Although it is legal, such healing is not accepted as a legitimate practice that can be included in the

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modern system. The inverse is true as well: what is legitimate is not necessarily legal, as in cases where doctors prescribe expensive medications because they receive benefits from the pharmaceutical industry (Pardo, 2004). The medical profession’s structure maintains power in the hands of the government, in what Foucault calls biopolitics, an essential control of citizens’ bodies (1979). Thus, folk healing is excluded altogether from the framework of scientifically endorsed medicine. Ethnographers in many places have documented how spiritual healing is marginalized despite its efforts to be incorporated as a supplement to— not a replacement of—Western medicine. Two examples are China (Yang, 2015, 72) and Siberia (Van Deusen, 2004). There, spiritual healers were condemned for “superstition” when the real concern was that they were operating outside the system and thus bypassing state supervision. This kind of governmental response has been harsher in nondemocratic societies, such as the USSR and the South Korean military dictatorship of the 1970–1980s, because such regimes do not consider broad public legitimacy as a relevant factor. Just as scientific medicine excludes traditional healing, it is also the case that most healers are disinterested in testing their methods through the scientific process, and so they remain liminal. Such liminality bears stigma and social marginalization, but it is also, as Pardo (1996, 119) asserts of Christians in Naples, significant “in the construction of roles which allow so much that is out-of-the-ordinary to be explained”. While the government’s sovereignty over public health entails the exclusion of non-modern forms of healing, healers practice complementary or alternative medicine, terms that inherently denote marginality but also represent practical capacity. In religious and spiritual healing, certain individuals are believed to be able to communicate with supernatural entities in order to enhance the health of believers and clients. This chapter compares two such belief systems and practices—tsaddik veneration in Israel and manshin possession-­ trance rituals in South Korea. The medical institutions in both countries view these folk healing practices with suspicion. To them, the healers are charlatans who take advantage of ill people at their most vulnerable. Most medical doctors do not see any healing potential in supernatural intervention, because it stands in contradiction to scientific thinking and usually does not focus on the body at all. However, many contemporary urban people still seek miracles of scientifically unexplained healing.

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I have followed groups of tsaddik venerators in Israel, led by Rabbi Yaacov Ifargan, since the late 1990s, and Korean manshin since the mid2000s. Although the Israeli case represents vernacular monotheism, while the Korean case exemplifies polytheism, they are similar in their perception and practice of spiritual healing. Moreover, institutionalized medicine in both countries has been far from supportive; although in both cases patients do not exclude conventional medical treatment from their healing process. Religious healing is an attempt to regain control of an otherwise chaotic biological situation, and especially of chronic or terminal illnesses. The flexibility of vernacular religious healing makes it accessible and plausible even to urbanites who rarely engage in religious practices in their daily routines. Secular patients might search for professional spiritual healers because they do not feel knowledgeable enough to determine which chant, offering, or ritual can help. When institutional medical doctors say that they have no cure, then even atheistic, sceptical people might search for less scientific healing methods. This is when the help of manshin in Korea and tsaddik-venerating rabbis in Israel are most often sought out. In the chapter, I discuss three aspects of spiritual healing. First, I analyse and compare cosmological perspectives on the supernatural, the body, and illness. Second, I discuss the roles of healers and patients in the treatment. Third, I examine how spiritual healers view modern medicine and how doctors react to spiritual practices of healing.

Healing Through Lived Religion: The Cosmological Perspective In Korea and Israel, many people believe that illness is often the result of spiritual weaknesses, be they angry spirits of the natural elements in Korea or punishment for sins in the Jewish tradition. It is believed that health may be enhanced through rituals that address supernatural entities whose powers are thus harnessed for personal well-being. In analysing the Korean and Jewish belief systems in relation to health, we see that, although they stem from contrasting religious worldviews, their understandings of how illness and health are related to supernatural interventions are similar. Nevertheless, not all Koreans or Israelis use the services of spiritual healers. Most Christians in Korea refrain from consulting manshin (although some do so in secret), and many atheist Israelis and Ultra-Orthodox Jews

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refrain from venerating tsaddikim who are important to Hasidic groups (as will be explained below). The controversial nature of such spiritual healing practices, which are based on direct communication with supernatural entities, is similar to that of vernacular practices of Catholics in Naples (Pardo, 1996) and elsewhere. The legitimacy of these lived religions is a social construct and needs to be explored within its context (Pardo & Prato, 2019). The Healing Potential of Deceased Tsaddikim in Israel In Jewish tradition, health and illness are under God’s control. People pray for health, even in the most conventional Saturday and holiday texts. While Judaism is monotheistic, it admits a category of supernatural entities who can mediate between people and God. They are saints, or tsaddikim (sing. tsaddik), who are “seated close to the seat of honour” of God because of their outstanding virtue while alive. Tsaddikim accrued merit thanks to extraordinary acts, such as studying the Bible incessantly or helping the poor. Traditional Judaism envisions tsaddikim’s merit transferring to living people as an act initiated by God, but the belief that gravesite visits and praying to the tsaddik directly can heal transfers the agency to the spirit of the dead rather than the almighty God. This is one of the reasons that some of the Orthodox groups resent these beliefs. Nevertheless, enduring beliefs in the power of the tsaddikim’s graves are observable in those that have become pilgrimage sites. The most famous health-related gravesites outside Israel are those of Rabbi Menachem Mendel Schneerson (1902–1994), known as the Lubavitcher Rebbe, who is buried in New York City (for his life, teaching, veneration, and role in healing, see Heilman & Friedman, 2010; Dein, 2011), and of Rabbi Nachman of Breslov (1772–1810) in Uman, Ukraine (for his life and teaching, see Mark, 2009). Both gravesites attract thousands of pilgrims daily, and several hundred thousand around each rabbi’s hillula (anniversary of the tsaddik’s death). These auspicious dates are widely celebrated, as will be elaborated below, which emphasizes the agency of the tsaddik’s spirit and the belief that it is an entity with its own healing power. The two most famous hillulas of tsaddikim in Israel are those of Rabbi Shimon bar Yochai (second century CE) in the spring, and of the Baba Sali (1889–1984 CE) in the winter. On each of these dates, more than a hundred thousand venerators come to pray and feast near the grave. In

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addition to individual members of the general public visiting sacred gravesites, there are specialized rabbis who perform rituals for the deceased tsaddik. Such rabbis are also called tsaddikim because the believers perceive them as people with powers beyond the normal. It is believed that they can heal thanks to their own special connection with God and with the spirits of deceased tsaddikim; some of them are relatives or spirits that appear in dreams and visions of the living rabbis. One such case is Rabbi Yaacov Ifargan of Netivot town in Israel, whose nickname is ha-Roentgen (the X-ray), for his perceived ability to diagnose people solely through his own merit. Since the 1960s, the southern town of Netivot in Israel has become an important pilgrimage site, as several virtuous rabbis who immigrated to Israel from Morocco are buried there, including the Baba Sali and the Roentgen’s father, Shalom Ifargan. Yaacov Ifargan was a preeminent healer in the 1990s and early 2000s. In 1999 and 2000, I participated in hillula events that he celebrated to honour his deceased father, Rabbi Shalom Ifargan. In one speech, he told the thousands of participants that his father had not been so famous while he lived because he carried out his charitable works far from the spotlight, as a tsaddik nistar (hidden saint). In saying this, Ifargan hinted that the famous Baba Sali, who is buried in the same cemetery, was not necessarily saintlier than Ifargan’s own father; rather, Baba Sali and his followers were more interested in publicity. When corruption scandals surrounding Ifargan erupted in the media in the late 1990s, he claimed that they were all false accusations invented by Baba Sali’s followers, who were jealous of his success. The public was suspicious, however, and Ifargan’s popularity diminished. I continued to follow news of him and participated in virtual ceremonies and lectures that he conducted in 2020 and 2021, during the COVID-19 pandemic. The diminishing numbers of his adherents following the scandals attest that in the quest for healing, the faith that people have in the living tsaddik is no less important than their belief in the merits of the dead one. The enduring strong belief in his powers to heal can be seen in the pleas of his current adherents. For example, on the day Sahlom Ifargan’s hillula in 2021, Rabbi Yaacov Ifargan posted on his Facebook page a video invitation to send requests before the live broadcast. These requests, which were posted as comments, included the specifics of an illness or injury to be healed. A very touching request was sent by Michel Msika, saying, “Respected rabbi, please bless my granddaughter Shira-Haya daughter of Keren-Marcel. She was injured very badly on Mt. Hermon 15 months

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ago, and is still not communicating with us. We hope that she will be up on her feet and communicating with us. Thank you, respected rabbi.” A request by Nati and Gili Branes reads, “Please, I beg you, pray for my daughter Shira, who exactly a year ago today was in a terrible car accident and has been in a coma since then. Please pray for salvation and heaven’s pity, so with the help of God a miracle will happen and she will awake healthy in body and soul, amen.” Such requests suggest the strong belief of some venerators that Ifargan can mediate between them and the supernatural to perform health-related miracles. Many ancient tsaddik gravesites are scattered in Israel, mainly in the Galilee region. One such ancient stone dome located in a forest near the town of Safed is the assumed burial site of Yonatan ben Uziel (first century CE), a tsaddik who is believed to bring about good matrimonial matches. Certain rabbis perform tikkun hatsot (midnight rectification) ritual there regularly. In the late 1990s, I followed Rabbi Yaacov Ifargan during his weekly rituals at the gravesite of Yonatan ben Uziel (Sarfati, 2018). During these rituals, which hundreds or thousands of venerators attended every week, people with illnesses often stepped up to the rabbi and asked for help. He was believed to channel Yonatan ben Uziel’s supernatural abilities while performing near the gravesite. Hasidic tsaddik venerators, such as the rabbis discussed above, are scorned by some parts of the ultra-Orthodox Jewish community. In the Hasidic tradition, sects are led by hereditary rabbis who are seen as having seemingly superhuman powers. More traditional rabbis view this near-­ deification as a sort of pantheism. They especially criticize veneration of the dead as improper for Jews. This strife began when charismatic rabbis began a spiritual revival in Eastern Europe in the eighteenth century (Segal and Blondheim 2018). Moreover, many well-established rabbis criticize charismatic rabbis such as Ifargan for not having led a religious lifestyle in their youth and view their conversion into the ultra-Orthodox way of life as insincere and driven by economic gain. The Healing Potential of Spirits and Gods in Korea In the shamanic perspective of Korean vernacular religions, human and supernatural entities can interact with each other directly. Humans can pray and talk to the spirits of deceased people or to the powers of nature, and these entities can respond through various acts, including causing sickness or healing. When supernatural entities are venerated properly,

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they are happy and bless the venerators with good health. If they feel neglected or disrespected, they might inflict illness. Manshin Jenn, whose words opened this chapter, experienced shinbyŏng as a result of ignoring the spirits’ request that she become an ardent venerator whom they can possess, and who dedicates her life to making them happy. The initial requests came in the form of dreams and visions but, when she did not respond as the spirits wanted, they made her ill. She said, “Only when I finally found a shaman to consult, after several years of anxiety and pain, did I get actual healing options. When I participated in the rituals, my pains gradually decreased.” She thinks that, had she not accepted the role of manshin, she probably still would be very ill. The spirits are not viewed as very compassionate in such a case. Most manshin are female, while most spirits are male. The venerated ancestors and historic figures were mostly preeminent men, whereas the most commonly venerated female ancestor is a deceased manshin called shin halmo ̆ni (spirit grandmother). Nature spirits, such as sanshin (the mountain god) and ch’ilso ̆ng (the spirit of the constellation Ursa Major) are mostly male, although in some cases they have wives, who can also help in healing. Not all the gods are perceived as merciful. Some are venerated because it is believed that they can cause illness. Angry ancestors are the most feared ones. For example, people who died in tragic circumstances are viewed as seeking revenge and might cause illness. In such a case, a more benevolent entity, such as sanshin, can be called to help convince the angry spirit to stop aggravating the patient’s body and allow their proper healing. The spirits of smallpox and other diseases are called, if male, hogu pyo ̆lso ̆ng (spirit of illness) and, if female, hogu aegisshi (girl spirit of illness). They often belong to young people who died of disease (Kim, 1993). Having died before marrying, they do not receive ancestor worship, which in Korea is performed by the person’s offspring. Such spirits feel neglected and therefore need constant appeasing to prevent them from causing harm. Manshin entertain them with special songs called muga and festive rice cakes. They often call these spirits sonnim (guests) and welcome them with food, but they convince them to leave soon after, as one would with a visitor. The ritual of sending these spirits off includes offering steamed sorghum or millet in a straw basket placed on a tree outside the village (Kim, n.d.). The cosmology of musok does not have a fixed hierarchy. There is no supreme God among the multiple entities that manshin venerate. The

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term manshin itself reflects this characteristic, because man means 10,000 and shin is spirit or God. Thus, practitioners are called 10,000 spirits to signal that they venerate a wide variety of entities. Each manshin has a unique pantheon, in which ancestors play an important role as personal guardians, and natural elements can offer support. Mythical creatures are expected to behave in accordance with their persona in the myths, and thus, if they are described as healers, the manshin can ask them to heal their patients. Such a famously compassionate spirit is Princess Pari, an abandoned daughter who, after many hardships and supernatural encounters, returns home and heals her dying father (Pettid, 2000). When someone needs healing, a manshin asks the spirits to check for a supernatural grudge or disharmony that might be causing the disease. This can be an angry spirit dwelling in the house or its surroundings who is not being venerated at all, or an ancestor who has not been tended with the proper vernacular ancestor rites. In such cases, the spirits that surround the manshin can negotiate how the patient may appease the angry entity. In this perspective, if a person ignores the signals that supernatural entities send, such as illness, the condition might get worse and may even result in death. Initiated manshin are not exempt from such a danger and, as a precaution, they maintain a routine of veneration dedicated to the spirits that they know best and perform preventative rituals every few years. In the two cosmologies discussed above, well-being depends on the will and actions of supernatural entities. Spiritual healers can determine the reasons for a particular disease and suggest ways to appease the supernatural and bring health. The cosmologies envision different kinds of entities with different origins and relationships. In the tsaddik cosmology, God is one and unique, and the tsadikkim are spirits of righteous men. In some cases, they are living rabbis who are perceived as healers because of their mediation between the living and God or dead tsaddikim. In Korea there are many gods, and the spirits of the dead are venerated as ancestors. The venerated entities did not necessarily accrue merit in their lives, but are often strong politicians, loving family members, or various kinds of demons. The main difference seems to be the eclectic nature of the polytheistic cosmology of musok, as compared with the stricter criteria that tsaddikim must meet to be venerated.

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Healing Through Interaction with Healers: The Performative Aspect Both rabbis and manshin perform healing rituals on several different scales, from short, individual consultations to rituals that can last many hours and include many participants. Yet these rituals differ markedly in the behaviours and imagery they entail. In tsaddik veneration, there is no visual rendering of God, and the saints who mediate the venerators’ requests are shown through paintings and photographs. In Korea, by contrast, the supernatural entities are vividly depicted in cartoon-like paintings and statues. The healers’ roles are very different as well. A rabbi typically suggests that the patient may heal by giving alms and reciting biblical verses. He does not claim that he can channel the tsaddik’s spirit, nor does he deliver the tsaddik’s words directly. In contrast, during kut rituals, the manshin asserts that the spirits have descended into her body (shin naerim) and are available for questioning and petitioning directly though her mediation. The Healing Potential of Tsaddik Veneration in Israel Yoram Bilu (1997) describes rabbis who engage in healing rituals as “tsaddik impresarios” who dream of the tsaddik asking them to deliver divinations and blessings. Most tsaddik venerators either visit the tsaddik’s gravesite or meet rabbi healers. Pilgrimage tours to gravesites in Israel and abroad are common and include praying, asking for blessings, and leaving tokens of veneration near the graves. This tradition typically began when the rabbi was alive and offered his blessings directly to his disciples and followers. Some of my interviewees visited gravesites abroad and told of mystical experiences there. Brahot told me in 1999 how she used a tsaddik’s healing power to help a friend whose fertility treatments had failed many times. While on a tour in Morocco, she picked a fruit growing in the graveyard where a certain tsaddik was buried. After the friend in Israel ate this fruit, her next fertility treatment was successful (Sarfati, 2018: 188–9). Brahot does not identify or live as a religious person, but she was attracted to tsaddik veneration and incorporated it into her otherwise leisure-­ oriented tourism activities in Morocco. The pilgrimage sites are featured on amulets, photographs, and other sacred paraphernalia sold in stalls near graves and in religious goods stores. The immense importance that such pilgrimages have for individuals and

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groups of venerators could be witnessed during the COVID-19 pandemic in September 2020, at the time of Rabbi Nachman’s hillula in Uman. The Ukrainian authorities had closed airports to prevent the spread of the virus, yet thousands of Jewish pilgrims flew to the countries bordering Ukraine in hopes that overland borders would be less supervised. When Ukrainian police prevented the pilgrims from crossing, they camped out for weeks, until they were deported, demonstrating their strong belief in the tsaddik’s powers and the hardships that many are willing to undertake in order to be in his presence. In a television interview, Israel Shnor, one of the pilgrims who were stuck near the Belarus border for three weeks, explained his view of pilgrimage at a time of global health anxiety: “All the people that you see here, and there are many more that you do not see, never thought not to arrive. With all due respect, we have a tradition of more than two hundred years” (Nachshoni et al., 2020). A similar stance was held by the hundreds of thousands of pilgrims who attended the tragic hillula of Rabbi Shimon bar Yochai in May 2021. During the hillula, 100,000 pilgrims visited the forested mountain site where he is allegedly buried. They included ultra-Orthodox Jews as well as others, less observant but still hoping for supernatural intervention. They crowded the gravesite, camping in large groups in the nearby forest for days, without proper anti-Covid hygiene facilities. For them, the blessings obtained from the tsaddik on the anniversary of his death outweighed the risk of contracting the disease. When they were interviewed by the media, many stated that no illness could be contracted there, because the tsaddik’s spirit would protect them from any harm. Unfortunately, in one yard where a certain ultra-Orthodox group prayed, as the pilgrims crowded on improvised platforms in order to watch their rabbi sing, some of the structures collapsed. People rushed to the exits crowding in the narrow alleyways, and forty-five pilgrims died. In the aftermath of the disaster, most of the pilgrims interviewed said they would attend the rite again the following year, so as to allow the souls of those who died to continue their hillula participation. In June 2021, I visited the cemetery in the southern town of Netivot— where the Baba Sali, the Roentgen’s father, and other Moroccan-Israeli rabbis are buried—to see whether pilgrims were back now that COVID-19 restrictions on travel and gatherings had been lifted. There were only a few visitors to the grave of the Baba Sali and the adjacent amulet shop, and none at the grave of Yaacov Ifargan, although it was the day of his hillula, though more visitors arrived in the evening, in time to participate in the

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advertised tikkun ceremony that began at 9 PM. Still, I observed Jews of different levels of religiosity. Jewish people define themselves on a continuum from ultra-Orthodox, through observant or traditional, to secular or atheist (Sarfati, 2018). Most people visiting the hillula in 2021 were observant Jews, easily recognized by the kippa on the men’s heads and the scarves and hats covering the hair of married women. There were only a few ultra-Orthodox Jews, distinguished by their black suits and hats. There were far fewer secular participants, although these had been the majority of the pilgrims I saw in 1999. This shift in the participants’ religious affiliation demonstrates that Ifargan, who is suspected of corruption, has been delegitimized, especially in secular circles. His father’s fame as a tsaddik worth a pilgrimage has decreased accordingly. Suspicion of greediness is not exclusive to spiritual healing. As Pardo (2004) explained in relation to Italy’s health system, fear of corruption can deter patients from seeking out certain health practitioners, and when patients discover after the fact that their healer was, in fact, corrupt, they feel demoralized. Although tsaddik veneration is a vernacular form of healing rather than an organized system, patients take it very seriously. They donate money in exchange for blessings and prayers on their behalf, and if that money is misused, they can get very upset. Still, at the hillula in June 2021, at least three people seated in wheelchairs came in hopes of a miracle, and several others sought blessings for hospitalized relatives. The live-streamed event—a medium that has become much more widely used since the COVID-19 outbreak—hosted around 4000 viewers, and the video was shared more than a thousand times. Of the 4468 comments that were posted during the live stream, over half included the words health (briut), healthy (bari), or healing (ripui/refua). Like many other tsaddik-venerating rabbis, Ifargan mediates the tsaddik’s power during tikkun or hillula rituals by praying, singing, and burning hundreds of wax candles in bunches in a large, specially designed metal fireplace. At the height of the event, he throws hundreds of unopened boxes of candles into the fire, while calling out the names of different gates of heavens, such as the gate of good omens and the gate of salvation, as each box reaches the fire. He calls out the most important gates, among them the gate of health, many times, throwing candles each time and rhythmically repeating the gate’s name. The audience responds with “Amen” each time, and the auditory quality of the repeated phrases creates what many pilgrims describe as “a sense of unity”, “the ability to

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connect with so many strangers”, and “a power that even God cannot dismiss or ignore”. In the 1990s, many of my interviewees were frequent visitors who participated in the nightly rituals every week or month, although this required travelling several hours each way. In 2021, there were fewer participants, and the effect of multitudes repeating the same rhythmic calls was not as powerful as in the larger gatherings I observed twenty years before. The Healing Potential of Spirit Possession Practices in Korea Manshin communicate with the supernatural by channelling spirits and gods through their bodies, thereby learning what disharmonies exist and how to solve them. The practice involves a possession trance, achieved through drumming and dancing, which also appeases the angry supernatural entities. These entities are also fed with delicacies and sacrificial animals. Jenn and other manshin do not use drumming or singing in their short, daily consultation meetings. Such noisy techniques are difficult to use in contemporary urban living conditions. Instead, they chant quietly and use divination tools such as flags in five colours, coins, and uncooked rice. Still, they get possessed by their closest spirit guardians—the ones they venerate daily—or hear divinations and orders from spirits without getting possessed by them. Jenn told me how she experiences the spirits during such meetings with ill clients: “For example, I can see a child’s figure standing behind the patient and ask her if she had a young sister or cousin who died recently”. As explained above, the spirits of young people who died under tragic circumstances are often the cause of maladies. “To appease such spirits, I place candy on my ritual altars, and when possessed by them, I might ask the clients to play with me and speak in a childish manner”, she says. Communication with the supernatural in the course of a possession trance is called “opening the gate of words” (Bruno, 2002). Each spirit or God is known for demanding certain kinds of veneration. Nature spirits like vegetarian foods, because they are perceived as merciful Buddhist entities. In contrast, spirits of historical generals, kings, and high officials expect to be fed with meat, expensive liquor, and imported cigarettes. Generals in particular like to possess manshin when they are performing bravery acts such as stabbing their chests with knives and standing atop sharp blades (Sarfati, 2021; Chapter 1). Performing such extraordinary feats accomplishes two goals: it demonstrates to the audience that the

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manshin is entranced and protected by supernatural powers; and it pleases the spirits of warriors, who miss the thrill they had while alive. Pleased spirits heal and protect the people who paid for and performed the ritual. For example, a spirit can say that it is hungry and ask that a small altar with offerings of rice and water be placed on the windowsill. An ancestor can ask for a commemoration rite on the anniversary of her death. A mountain spirit can ask that a pilgrimage be performed. Once the manshin understands the cause of disharmony in the supernatural realm, she explains it to the patient and prescribes the precise act needed to reverse the problem. The symptoms of the disease may require intervention by modern medicine, but the root cause of the affliction can be solved only in a spiritual manner. I asked several of my manshin interlocutors if they performed such rituals for COVID-19 patients, and they answered that they did not. They said that COVID-19 patients were completely isolated, and their families (many of which were also in quarantine) seemed to be concerned with the medical aspects more than with spiritual healing. Moreover, funerals were processed hastily and privately, and therefore pre-funeral musok rites were not possible. The death toll of COVID-19 in Korea was very small compared with other countries. Nevertheless, manshin did conduct preventative rituals in cases where clients asked them to cleanse bad spiritual influences or deliver health-related blessings from ancestors and the gods of natural elements. In March 2020, I participated in a live, online ritual that was performed without an audience in a restored palace in Seoul to bless the nation for health and prosperity. It was a theatrically staged event, with no interaction with the audience or clients. Even in private rituals the patients have gotten used to watch on screen, while the manshin followed the COVID-19 regulations and performed without the presence of audience. My findings about folk perceptions of COVID-19 in Korea are preliminary, but it seems that the pandemic was regarded as stemming from general dissatisfaction in the supernatural realm, rather than triggered by each patient’s unique pantheon. Jenn told me that she thinks the pandemic happened because most countries in the world have been disrupting nature, the elements, and cosmological harmony.

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Healing with and Without Doctors: The Interaction with Modern Medicine Tsaddik venerators and rabbis, like manshin and their clients, do not advocate spiritual healing as a substitute for modern medical treatment. Rather, they suggest that supernatural interventions might help the healing process, ensure that the ill find the most appropriate medical care providers, and enhance or speed their recovery. In the urban spheres where most spiritual healers operate in Korea and Israel, I have not encountered any healer who tells clients to disregard modern medicine. On the contrary, many manshin and rabbis appeared on mass media as they received the COVID-19 vaccine, in order to convince the public that the vaccine is legitimate and safe. Another point of similarity between the two cases is that both countries have well-established, extensive, government-­ sponsored health care systems, which makes the use of complementary spiritual healing a choice, unlike the case explored in Mantanali as discussed in this volume (Koenig & Tiéman, 2023), where informants’ use of alternative medicine is often, but not always, the result of a lack of access to medical health services. At the same time, spiritual practitioners respect the boundaries between medical and spiritual healing, and there has not been a push in either country to incorporate spiritual healing into the medical establishment. Spiritual healers accept the authority of modern medicine, although they criticize its shortcoming and perceive it as too narrow. The personal agency of spiritual healers seems to be similar to that of the medical practitioners discussed by Pardo and Prato (2019). Both kinds of healers rationalize their action by stating that their occupation is a matter of personal morality. Medical doctors can choose how much effort to dedicate to each patient; and the spiritual healers view themselves a self-employed and accept that the government has no responsibility to provide their services to the public through an institutionalized system. Yet the common perception of most medical staff is that folk healers are unnecessary and might even jeopardize proper treatment. This perspective is prevalent despite the absence of any scientific large-scale medical research in these countries proving that spiritual healing is medically harmful. The objections rest merely on personal and professional beliefs and anecdotal evidence. Nevertheless, there is no legal effort to ban spiritual healing.

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Complementing Modern Medicine with Tsaddik Veneration in Israel Tsaddik venerators in Israel are often considered by the intellectual elites as irrational, uneducated people of low socio-economic status, who are harmful to the project of national modernization. This view was boldly expressed by a famous, award-winning author, Yair Garbuz, who in 2015 stated onstage that the people who “kiss amulets, and who prostrate and bow in front of tsaddik graves” are harmful to democracy. In July 2021, he publicly insisted that he did not regret this statement (Walla, 2021). Such is the delegitimizing perspective that has prevented almost any serious scientific inquiry into the possible health benefits of tsaddik veneration. Even as anthropologists dwell on the venerators’ perspective, demonstrating how important the healing powers of tsaddik veneration are to them, modern medicine has not performed factual research to confirm or debunk these religious claims. Research on the placebo effect and on the psychological aspects of successful healing might have used data about ill and recovering tsaddik venerators, but it has not done so. This is treacherous ground to walk, because in Israel religion is entwined with governance, and debunking the powers of spiritual healing might be viewed as dangerous blasphemy. At the same time, if such research were to find some merit in tsaddik veneration, it might undermine the scientific worldview on which Israel’s system of modern medicine is founded. During the COVID-19 emergency, some of the fears that conventional medicine espoused towards the power of rabbis and spiritual healers in Israel materialized when new kinds of resistance to health authorities emerged. Some rabbis were professed anti-vaxxers, spreading rumours about fertility issues after vaccination and urging their followers to continue leading normal lives and to disobey lockdowns. Others endorsed the health authority’s recommendations. These differing attitudes caused strife within the ultra-Orthodox Israeli community and were politicized by the critics of Orthodox Judaism who wish to separate religion from the state. However, these debates were not related directly to the veneration of tsaddikim, but to general concerns of health and authority.

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Complementing Modern Medicine with Shamanic Interventions in Korea The current stigma against manshin derives from the early encounters of Koreans with Western medicine in the early twentieth century, when politicians and newspapers claimed manshin did not understand science. “Indigenous female health practices were de-legitimized through a modernizing discourse to advocate newly institutionalized practices and products” (Merose, 2012, 49–50). Moreover, throughout premodern Korea, Buddhist and Confucian establishments refused to regard manshin as important in healing or in other socio-cultural processes. The main form of acknowledgement that manshin have managed to receive from society and the intellectual elite is their importance to artistic heritage transmission, because their rituals include many forms of song and dance that they alone have maintained for generations. Nevertheless, vernacular healing has survived, and it has become entwined with the healing practices of hospitals and doctors. Jenn told me that she conducts divinations to ask the spirits about modern medical options that her ill clients have been offered. As she says, “The spirits help direct the patients to the best medical treatment, because they know the real reason for the problem. Doctors often just offer several treatment options, and the patients do not know which one to choose.” One example is the story of Andrea Kalff, a German woman who happened to be in the audience of a 2006 conference where the famous manshin Kim Kŭm-hwa (1931–2019) performed. After the show, one of Kim’s apprentices approached Andrea and told her that his teacher wished to meet her. The manshin explained, through an interpreter, that Andrea was very ill and had to be initiated as a manshin in order to survive. Andrea says, “This seemed nonsense to me. I had no knowledge or interest in Korea and its traditions.” A few weeks later, a doctor diagnosed her with advanced-stage cancer. From that point on, Andrea’s path combined modern medical surgery with an initiation ritual. She adhered to the advice of Kim to conduct a minor surgery, although the doctors thought that this might lead to future complications. Nevertheless, she was healed and believes that the combination she chose was the best. Andrea’s trust in manshin Kim increased, and she became one of the few Westerners to practice musok. She apprenticed with Kim over the course of many visits to Korea and has developed her own practice. As she explains, “My healing is based less on traditional Korean texts, and more on personal healing

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capacities, such as seeing the illness within a person, as Kim used to do, and healing with energies from my hands and mind”. As a healer who came from a Catholic European background, Andrea wants to demonstrate to Western medicine how powerful shamanic healing can be. She is planning a joint research project on the topic with an Austrian psychiatrist. Andrea’s story demonstrates how Korean shamanic healing can be harnessed to complement medical interventions in contemporary, hypermodern social conditions.

Conclusion In both case studies, spiritual healing is believed to be obtained through communication with supernatural entities. Comparing spiritual folk medicine in a strictly monotheistic society and a multi-religious, polytheistic society reveals that religious concerns do not account for the tensions between modern medicine and spiritual healing. Rather, in both cultures, these tensions arise primarily from institutional concerns and the regulation of bodies and health. The legitimacy or illegitimacy of spiritual healing practices rests on personal beliefs, not on legal issues or scientific facts. In both Israeli tsaddik veneration and Korean musok, human mediators seek to enable ordinary people to appeal to the supernatural and be blessed by it. Both cases involve complex, often expensive rituals, and in both cases, many venerators report successful healing. Nevertheless, the contemporary ministries of health in both countries do not regard these folk healing practices as medical treatments, nor have they investigated their potential healing benefits. Spiritual healing diverges from modern medicine even more than do herbal medicine and traditional physical treatments such as acupuncture, because it does not see the body as the problem. It might not even include inspection of, or contact with, the suffering patient. Rather, healing comes from supernatural entities that do not fit within modern scientific conceptions of the cosmos. None of the spiritual healers I interviewed in the course of this research object to modern medical treatment of the symptom of illness, but simply assert that the supernatural roots of the affliction also require treatment. This is an assertion beyond the methodology or terminology of science, and therefore it has been neither challenged nor confirmed by the authorized health-providing systems. In both cultures, spiritual healers accept their exclusion from the organized health system. Their unique position in the healing field and the vernacular nature of

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their traditions free them from any kind of supervision beyond that of their peers and clients. Moreover, the biopolitics that dictates the delegitimization and marginalization of spiritual healing within the medical systems of these hypermodern societies has not prevented millions from using it in the urban centres of South Korea and Israel. The contradiction between scientific and vernacular medicine does not exist in the worldview of these contemporary spiritual healers. They are legitimized at the grassroots level and enjoy the cultural and financial support of their many patients.

References Agamben, G. (1998). Homo Sacer: Sovereign Power and Bare Life. Stanford University Press. Agamben, G. (2000). Means without End: Notes on Politics. University of Minnesota Press. Bilu, Y. (1997). Mechkar Hatarbut Haamamit Beidan Hapost Moderny: Sipur Ishi (Research on Folk Culture in Postmodern Times: A Personal Story). Teoria ve Bikoret (Theory and Criticism), 10, 37–54. Bruno, A.  L. (2002). The Gate of Words: Language in the Rituals of Korean Shamans. University of Leiden Press. Dein, S. (2011). Healing the Spirit: Mystical Judaism, Religious Text and Medicine. In F.  Watts (Ed.), Spiritual Healing: Scientific and Religious Perspectives. Cambridge University Press. Foucault, M. (1979). Discipline and Punish: The Birth of the Prison. Vintage. Heilman, S. C., & Friedman, M. (2010). The Rebbe: The Life and Afterlife of Menachem Mendel Schneerson. Princeton University Press. Kim, H. (n.d.). Smallpox Prevention Ritual. Encyclopedia of Korean Folk Culture. Seoul: National Folk Museum of Korea. https://folkency.nfm.go.kr/en/ topic/detail/2408# Kim, O.-j. (1993). Chosŏn Malgi Tuch’ang ŭi Yuhaeng kwa Mingan ŭi Taeŭng (Smallpox Epidemics and Popular Responses in the Late Chosŏn Period). ̆ Uisahak (Korean Journal of Medical History), 2(1), 38–58. Koenig, D., & Tiéman, D. (2023). The Fragility of Legitimacy: Access to Health Care in Manantali, Mali. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 4. Palgrave Macmillan. Mark, Z. (2009). Mysticism and Madness: The Religious Thought of Rabbi Nachman of Bratslav. Bloomsbury Publishing. McLoughlin, D. (2010). The Sacred and the Unspeakable: Giorgio Agamben’s Ontological Politics. Theory & Event, 13(1), 1.

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Merose, H. (2012). Shamans and Superstitious Mothers: Modern Healthcare Discourse in 1920s-30s Korea. Asian Journal of Women's Studies, 18(1), 30–61. Nachshoni, C., Shompalbi, A., Reuters, E. D., & Mizrachi, M. (2020). Shlosha Shavuot al Hagvul Haukraini Baderech le Uman: Anachnu Mitkarvim le Mashber Humanitary (Three weeks on the Ukrainian border on the way to Uman: We are nearing a humanitarian crisis). Ynet, 15 September; https:// www.ynet.co.il/judaism/article/HJFjhf0Vw Pardo, I., & Prato, G. B. (2019). Ethnographies of Legitimacy: Methodological and Theoretical Insights. In I. Pardo & G. B. Prato (Eds.), Legitimacy: Ethnographic and Theoretical Insights. Palgrave Macmillan. Pardo, I. (1996). Managing Existence in Naples: Morality, Action and Structure. Cambridge University Press. Pardo, I. (2004). Where it Hurts: An Italian Case of Graded and Stratified Corruption. In I.  Pardo (Ed.), Between Morality and the Law: Corruption, Anthropology and Comparative Society. Routledge. Pettid, M. J. (2000). Late Chosŏn Society as Reflected in a Shamanistic Narrative: An Analysis of the Pari Kongju Muga. Korean Studies, 24, 113–141. Sarfati, L. (2018). Vernacular Dialectics: Spiritual Practices of Tsaddik Veneration by Secular Israelis. Journal of American Folklore, 131(520), 181–208. Sarfati, L. (2021). Contemporary Korean Shamanism: From Ritual to Digital. Indiana University Press. Van Deusen, K. (2004). Singing Story, Healing Drum: Shamans and Storytellers of Turkic Siberia. McGill-Queen's University Press. Walla. (2021). Yair Garbuz: Magia li Pras al Neum Menashkei Hamezuzot (I deserve an award for the amulet-kissers speech). Walla Tarbut, June 30. https://e.walla.co.il/item/3444920 Yang, M. (2015). Shamanism and Spirit Possession in Chinese Modernity: Some Preliminary Reflections on a Gendered Religiosity of the Body. Review of Religion and Chinese Society, 2, 51–86.

CHAPTER 11

Health Sovereignty in West-Central Mexico: Legitimacy from the Grassroots Elizabeth A. Olson

Introduction In Mexico, laws exist which prohibit the sale of more than seventy medicinal plants and herbs for medicinal purposes, citing that they have potentially harmful or unknown affects. The plants and herbs that are restricted are not mostly opioids nor illicit, but the law restricts the sale and promotion for medicinal purposes. Examples of plants on the list include sweet flag, hemp, belladonna, wormwood, and St. John’s Wort (Godoy, 2015). The dominant biomedical health system in Mexico is a major advocate for the prohibitions. Yet, medicinal plants are used widely and the knowledge of plant usage is highly valued. The common explanation for the law is that it is there to protect physicians who may not understand possible drug/plant interactions (Olson, 2014). There are even some physicians who support the use of traditional plants as medicines, along with some types of alternative health practices; however they reflect a minority and

E. A. Olson (*) Southern Utah University, Cedar City, UT, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 I. Pardo, G. Prato (eds.), The Legitimacy of Healthcare and Public Health, Palgrave Studies in Urban Anthropology, https://doi.org/10.1007/978-3-031-25592-2_11

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those variations on an individual level do not amount to a noticeable trend in west-central Mexico (Olson, 2016). In fact, people use plants as medicines concurrently with biomedical remedies (Olson, 2014). Individuals who hold this cultural capital (i.e., the theoretical and practical knowledge of medicinal plants) are ordinarily shielded from prosecution as they operate “under the radar” and in so doing their persistence in the usage of medicinal plants does not threaten the legitimacy of the dominant biomedical structure. The dominance of the biomedical system can be seen in political policies and practices that seek to restrict the reliance on alternative and complimentary medicines. Laws restricting the use of medicinal plants, for example, are not very easily enforced but serve to send a clear message to the general public: biomedicine is supreme. In this social context, the food/health sovereignty movement emerges at a grassroots level where they have a direct personal influence and opportunity to strive for broader social and political changes (see Boucher, 2019; Channa, 2023). An increasingly visible movement for food/health sovereignty provides the ethnographic context for the central argument in this chapter: the utility of plants, which are readily accessible in the study area, is secondary to the social capital gained through usage and participation in grassroots movements to minimize local impacts of global markets. Social capital (as opposed to economic capital) in this scenario is the ability to use plants not only to contribute to the immediate health of the individual or family member, but to also help community members. Thereby, the individual may signal greater social capital by participation in the health sovereignty movement where information and resources are exchanged at workshops and community events. The grassroots movement embodies a traditional authority that runs counter to the dominant biomedical health sector in Mexico. In Mexico, the impacts of global changes are felt at local levels across many domains: politically, environmentally, economically, and culturally. The food/health sovereignty movement is a grassroots effort that aims to restructure the Mexican food system such that the local economy and traditional foods and natural environment can all be sustained (or, in some cases, revitalized). One critical component of achieving this goal is supporting local producers in agricultural practices that are less dependent on industrial inputs and global markets (i.e., agrochemicals or GMO seeds; Perfecto et al., 2009).

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The food sovereignty model has been expanded and adapted to help address the health needs of communities in Mexico. The so-called health sovereignty movement challenges capitalist-based systems of health promotion and maintenance. Food/health sovereigntists in the study area of west-central Mexico seek to empower themselves, their families, and community members, with access to the resources, knowledge, and skills necessary to live healthy lives through prevention and curing with plants (Via Campesina, 1996). Mexico has experienced a rapid increase of chronic, degenerative, lifestyle diseases over the last two decades. Mexico is facing an increase in the types of chronic health problems that are associated with modernizing the diet and lifestyle. Modernization of the diet and lifestyle is the quintessential epidemiological transition—the trend towards diabetes, heart disease, mental health issues, and non-communicable diseases that are associated with stressors in our lifestyle, nutrition, and environment. In particular, the top threats and concerns in Mexico are (Beletsky, 2000): • growing population • chemical pollution from factory discharges and waste dumping • destruction of natural habitats • deforestation • poor environmental record and outlook • widespread poverty • governmental neglect & corruption. These top concerns should be addressed by the national government. Albeit, big changes happen at various levels in different societies. The power and authority to drive widespread change come from legitimate leadership and organizations. The Organisation for Economic Co-Operation and Development (OECD) recognizes four types of legitimacy: input, output, shared beliefs, and international. These different types of legitimacy interact and overlap—no state relies on any single source of legitimacy. More attention should be paid to the legitimacy that comes from peoples’ shared beliefs and the community, grassroots, organizing level of legitimacy (Channa, 2023). Apart from being an extremely complex category, the goals and purposes of legitimacy may change over time in relationship to peoples’ changing cultural values and priorities. The formal legitimacy of the state-sanctioned industrial agriculture and biomedical systems is actively challenged by the grassroots legitimacy of food/health sovereigntists.

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Food/Health Sovereignty A fundamental argument made by food/health sovereigntists is that the global market economy is corrupt and unjust. Trade agreements between Mexico and other countries (particularly the USA and Canada) have made it virtually impossible for small-hold farmers to earn a liveable wage. The region where this work is focused is predominantly agricultural but the majority of the land is farmed via industrial agricultural processes, owned and operated by foreign businesses, and at the expense of local environments and human labour. Ejido lands are community-owned and managed resources, but beginning in the mid-1990s ejido lands that were considered “underproductive” have been increasingly leased or sold to outside businesses for the purpose of increasing output yields. Selling communal lands to private owners has been considered a major set-back to the Indigenous rights movement in Mexico.1 The process has been repeatedly challenged and rebuked because this takes lands out of the rightful Indigenous communities who have struggled to regain their ancestral lands, and the industrial agriculture that the land is turned over to rapidly degrade the local ecosystem and environments through the intensive use of mono-cropping, chemical inputs, GMO seeds, and little to no regulation of the environmental impacts (Perfecto et al., 2009). Another essential component of the food/health sovereignty movement in Mexico is the belief that the national government and dominant political regime, and the corruption in that system, is responsible for the inequalities and injustices in access to healthy food and proper healthcare services (Via Campesina, 1996). Biomedicine refers to the technologically based system of knowledge that is highly guarded and administered through formalized institutions. Culturally appropriate health services should be available and promoted by the state. Biomedicine can be (mistakenly) perceived as the singular, “true” system of medicine, when in fact there are a plethora of ethnomedical systems that are, and have been, practiced across Mexico. Indeed, biomedicine is but one of many ethnomedical systems that people in Mexico choose amongst. Because of the hegemonic nature of biomedicine in Mexico, the national health services programmes only promote biomedical services. In a state system 1  For a detailed discussion of the changes and challenges to the ejido communal land tenure system in contemporary Mexico, refer to Torres-Mazuera (2016) or Olson (2014) for a short description of the specifics in this region.

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where resources are not evenly nor justly distributed, and resources are limited, it is perhaps even more egregious to limit the scope of healthcare services available to the general population. The national government in Mexico has published lists of plants that are prohibited for their medicinal use; albeit these regulations are difficult to enforce and the plants remain in use through informal markets (sometimes clandestine). Nonetheless, the moral argument for the superiority of biomedicine, and the reported fears and risks of other healthcare modalities, is used to perpetuate a national system in which biomedicine remains hegemonic.

Top-Down Legitimacy in Mexico The legitimacy of the dominant social, political, economic apparatus in Mexico is questioned and challenged by the food/health sovereignty movement. There are at least two primary driving forces in questioning. One is the general distrust and suspicion of authority. Distrust is prevalent in Mexico and is perpetuated by the extensive influence of drug cartels and corruption in the formal governance structure. The second cultural force is a distrust of biomedicine and the government that stems from both a history of exploitation and corruption and the ongoing abuse of social institutions (such as schools which are chronically underfunded). Political and legislative legitimacy is upheld through the democratic processes outlined by the 1917 Constitution of Mexico. Elections through a democratic system in which many (more than ten) parties engage in campaigning and are included on the ballot. Policies and programmes are administered through a highly bureaucratic and hierarchical system which is wrought with corruption and incompetence. Rules are enforced through the withholding of access to resources. For example, families may receive supplemental stipends for children of specific ages if and when they attend school, get vaccinations, and register for other government-administered programmes. The medical system in Mexico mirrors that of the USA in many ways, minus some of the resources. There is a stark divide between public health sector, which is largely viewed as low quality and difficult to navigate, and the private medical system which is revered as being as good as the private health sector in the USA. In the private health care sector, advanced cutting-­edge technologies and therapies are available, while the common public healthcare sector remains using many out-of-date facilities and technologies. Access to healthcare in Mexico is structured by the

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relationship to the state as well as socioeconomic class. These are overlapping, since individuals of lower socioeconomic class are marginalized from participation in the mainstream institutions and structures. Distrust is perpetuated due to the widespread corruption in government, industry, and virtually all areas of public life. Corruption is at once distained but also accepted, and even anticipated. In fact, it can be seen as a ubiquitous resistance to formalized legal authority and the acceptance of alternative sources of legitimacy. The omnipresence of the drug cartels and corrupt governmental institutions is so extensive that it is difficult to parcel out where the corruption begins and where it ends. The pervasiveness of corruption in Mexican government and institutions can be summarized in the common expressions (which go hand-in-hand): “Hay corrupción en todos lados” (there is corruption everywhere) and “Si tú no te metas con ellos, no te hacen nada” (if you don’t get involved with them, they leave you alone). The first is the response given anytime corruption in Mexico is mentioned. Mexicans, like most cultures, place value on being “normal” and seek their national identity to be modern and contemporary; thus they see complaints or observations about the corruption as challenging the legitimacy of their nation. Paz (1950) and others (Lomnitz, 1995; Beezley, 2008) have noted how important national patriotism is in the contemporary Mexican identity, so it is within that context that Mexicans commonly defend the corruption in Mexico as being normal and commonplace in all parts and all countries. The second common response is given when drug cartels are mentioned. The common mantra in Mexico is that “if you don’t mess with them, they leave you alone”. This reflects the desire to maintain a perception of safety and normalcy in Mexican everyday life—and indeed there is a high degree of normalcy and safety for everyday life. But, the impact of the corruption and drug cartels is hidden and obscured by the façade of the tranquil rhythm of daily life. The corruption is something that is also challenged by the grassroots organizers as they seek to call out injustices and corruption at all levels of the system. In light of inequality, flawed social and political institutions, and corruption, the distrust of the biomedical system (along with the distrust of the government) persists.2

2

 For comparative insights on this issue, see Pardo (2004).

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Legitimacy and Grassroots Organizing Legitimacy refers to laws, governance, and authority which, as Max Weber noted, come from people. Legitimacy is necessary for domination and it can generally come in two ways: Legal (law) legitimacy such as that used in bureaucracies and traditional legitimacy which comes from elders, traditions, customs, and more community-based. Both are at play in west-­ central Mexico, as are the dynamics of social capital and cultural capital. Social capital is the degree to which one can rely on social networks and the ease with which one can do so. Cultural capital, in the context of this chapter, is the traditional knowledge of plants, farming, and healing. I suggest that social capital is used to inspire, lead, and perpetuate the grassroots health sovereignty movement in west-central Mexico. This case study examines the way that legitimacy and social capital are established and the performance of dominance in the areas of food and health.

The Research Site The location where this fieldwork was carried out is an agricultural region between the state capitals of Jalisco and Colima, not far from the Pacific Coast. Though it is an agricultural region, this research was conducted in the peri-urban areas and not in rural villages. The region is dotted with small agricultural towns where banda music serenades at the wee hours of the night to celebrate birthdays, and jaripeo (bull fights or rodeo events) are attended by the entire family. Horses can be occasionally seen trotting down the road alongside a brand-new Toyota RAV4 and street tacos are sold across the street from a major supermarket chain. This is contemporary Mexico in so many ways—the juxtaposition of Indigenous culture, colonial influences, and high-tech modernity punctuates daily life. The juxtaposition is not limited to material culture and of course permeates ideas and beliefs, as well. These dualities are what make Mexico so beautifully romantic and iconic as a destination for tourists and beloved homeland for many immigrants. However, the complexities of these juxtapositions can also be problematic. The mestizaje is a critical component of contemporary Mexican identity and patriotism (Olson, 2014). There are three adjoining municipalities where the bulk of the ethnographic research has been conducted: the largest one boasting a population greater than 60,000, the next largest reporting close to 22,000, and the smallest municipality having around 6000 individuals in 2019

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(INEGI). The largest municipality is also the primary urban centre and largest market economy in the region; the smallest municipality is characterized as largely agricultural with blue agave as the primary cash crop (which is used in the production of tequila).

Field Methods My research goal on this project, which has spanned more than a decade (2008–2021), was to describe the local responses to global pressures, and specifically the impact of globalization on medicinal plant knowledge. Not simply Indigenous knowledge or traditional ecological knowledge, but the emergence and adaptation of these knowledge systems to the changing epidemiological profile in Mexico (Baines, 2015). A portion of the broader research programme is presented here as a case study on the food/health sovereignty movement of west-central Mexico. Ethnographic research in this chapter includes participant-observation, interviews, and material analysis of the engagement with the philosophies embodied by the food/health sovereignty movement (Pardo & Prato, 2019). Together these data contextualize the ways that local families in the west-central region of Mexico are coping with global changes. The focus of this case study is on talleres verdes (green workshops), which are the primary activities of the food/health sovereignty movement in the communities where I have been working since 2008. Talleres Verdes, Green Workshops I am framing the examples of talleres verdes around three essential characteristics: (1) the people (leaders and audience), (2) the community (social dimensions), and (3) the purpose of the green workshops. People A green workshop is a community-based activity. They are grassroots and can take place in rural, urban, semi-urban locations depending on the target audience and availability of space. There is an emphasis on sustainable foods health, nutrition, community cohesion, and self-reliance. Furthermore, a green workshop is normally low cost and led by local vendors or producers. There is no specific hierarchy or any restriction on who can operate a green workshop. However, the more successful green

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workshops (judging by attendance numbers) are organized by a core group of three activists and their close associates. The core leadership in fact do not usually run the workshops, but will help facilitate and organize them by inviting the guest speaker(s), advertising the event, and helping with logistical arrangements such as a suitable venue. As one core leader told me, “Well, Liz, I just help organize these things […] hope that if people can see a benefit they will come and share and learn”. Occasionally some of the green workshops in this region of Mexico have been led by or supported by government or university agents. However, the vast majority are grassroots and organized and led by community members. One particular green workshop was held at the workshop of Las Comadres which is a colloquial term used to refer to one’s neighbours or friends and is actually women’s cooperative business producing green tortillas for regional sale. The workshop facilitators have dual identities as community organizers and leaders, in addition to being knowledge area experts. Though there is no expressed value system assigned, these leaders of workshops trade on their reputation and connection to the group of core activists. The target audience are other community members, particularly women (ages 16–80 have participated), although men between the ages of 18 and 75 were also observed participating in various green workshops. Tourists are generally not invited or included, unless it is national or regional tourism (i.e., Mexicans). The attendance ranges from six to more than fifty at any of the green workshops I attended and observed during the research period. One workshop facilitator was himself largely self-taught by looking things up on the internet, as he explained, I wanted to learn how to make soaps that would be more ecological, and I was reading about them online and I saw that it is not too hard to make them myself. So, I started trying to make some on my own because you know we can’t really buy these natural organic soaps and creams here without going to Guadalajara or shipping or something. […] I tried making some at my home for just me and my family. Well, we really liked the soap and I had too much from what I made so I gave some to friends, neighbours. […] Then I made shampoo and kept getting new recipes and learning by studying online and trying stuff.

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When I asked why he runs the workshops, he explained simply that “[p]eople in this area are interested and want to make things for themselves”, but there might be more motivation for him because during and after the workshop he takes the opportunity to sell his home-crafted products—shampoos, soaps, face creams, and sometimes other household or kitchen supplies. The teachers who lead can be elders, sometimes, and other times a younger generation; it is varied. Why? Because the intergenerational sharing of knowledge is a fundamental principle of the green workshops and the food/health sovereignty movement. In a seminar format they share knowledge and experiences, building social networks, business networks, and developing their capacity. They come together for workdays, knowledge exchange, and to generally support each other. But amidst all of that, more information is being transmitted including cultural values and political ideas. One workshop attendee noted, “They [Elders] know a lot about the plants, the soils. So, we don’t need new technologies and chemicals. But we can show them sometimes new tricks, too, haha.” Community One workshop focused on making medicinal tinctures which was hosted at Las Comadres Tortilleria (mentioned above). The fit was perfect because the local women’s cooperative business identifies as being led by mostly Indigenous women and their green tortillas are high in vitamins and minerals. Both the nixtamalization and the incorporation of chaya or “tree spinach” (Cnidoscolus aconitifolius) contribute to the high nutritional value of these delicious tortillas. They also have many local farmers involved in their business model. Community workshops and networks they are associated with provide an alternative economic market as both the participants and the leaders in these workshops are able to sell and market their products and exchange them with other participants. Green workshops actively promote a retention of local and traditional knowledge, as the green workshop held at Las Comadres demonstrated. This is an important element of cultural heritage but also in terms of technology and subsistence strategy in a sovereignty movement. By retaining this knowledge and actively sharing it, they shape the ways the individuals consume, use, recycle, and produce. There are fundamental ecological and political motivations for the green workshops. The desire to break free from the chains of a global free market economy while supporting their

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own ability to successfully work as farmers and their community, they make a political statement that is aligned with the Zapatista movement (EZLN), the anti-globalization movement globally, and other national and international causes.3 Note that the phrase “anti-globalization” comes from the participants in the green workshops themselves, and I did not ask them to distinguish it from anti-imperialism (which they may or may not see as distinct from anti-globalization). Most of the leaders of these green workshops do identify with strong political beliefs and campaigns. Nonetheless, the green workshops focus more on building up individuals and local pockets of sustainable communities, leaving political activism for other forums. Green workshops can include yoga retreats and reiki energy healing sessions, for example. In such green workshops, there is an active blending of traditional local knowledge (from the region in Mexico where it is held) with the global traditions of yoga, and so on. Some may question whether this is legitimate. In one such yoga retreat, the main guru and leader who was a Mayan woman said, “We are all connected by the energy […] the traditions I went to India to study are connected and have always been connected to my Mayan ancestors through energy […]”, asserting the authentic essential nature of yoga and plant knowledge, which she blended and used with confidence. Whether or not a knowledge system, or healing practice, can be deemed “authentic” and thereby “legitimate” seems not to be an issue for the participants who eagerly take notes and participate.4 Purpose In their own words, participants repeatedly pointed to four specific motivations or purposes for the green workshops: . to learn to heal ourselves; 1 2. to use the resources we already have (and not rely on going to the store to spend money); 3. to help each other in our community; and 4. to not depend on other (outside) people and their products. 3  For a deeper discussion of the global Indigenous Rights Movement and other allied efforts, refer to culturalsurvival.org or Niezen (2008) for a concise history of the movement. 4  Contrast this with the ethnography presented by Sarfati in this volume (2023), where legitimacy is rigorously established through connections to ancestral lands and spirits.

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The purpose of the green workshops has both cultural and ecological dimensions. One purpose is to promote health, broadly defined, and to teach people about how to use plants to heal themselves. They want to use the resources that they already have and not rely on going to the store to spend money. They want to help each other in their own communities, and cannot depend on other outside people and outside products. When crafting the medicinal tinctures, for example, they use the local mezcal and other local products exclusively, and they up-cycle reusable glass jars for storing the tinctures. Participants not only learn, by engaging in this hands-on process, but they also take home the things that they have made with instructions on how to use it for promoting health in their homes. Other green workshops make natural soaps, cook traditional foraged meals (vegan or vegetarian), learn about yoga practice and meditation, or focus on innovative farming and gardening strategies, as examples. The materials produced in the green workshops are used to promote the health of the individual and the health of the environment, since they are reported to be more affordable, less toxic, and even higher quality than the commercially produced alternatives. The Writing on the Wall A lot of the imagery and message that is conveyed in the green workshop advertisements and meetings is about a political endeavour—the social movement of food/health sovereignty. Table 11.1 provides some examples of the writing that are found on the walls, murals, advertisements, and other public spaces that the talleres verdes are promoted and held.

Discussion The above summarizes the years of participant-observation and interviews that I have conducted at a variety of green workshops in the region of west-central Mexico. One key concept that emerges from this research on the food/health sovereignty movement is the idea of sustainability. Sustainability, interpreted through an anthropological and interpretive framework, is wholistic and goes beyond the common rhetoric surrounding sustainable development and grassroots social movements (Ziglio, 2017). Certainly, this type of community action has both micro- and macro-level impacts and significance. We can see from the narratives and summaries above that ecological impact and economic viability are just as

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Table 11.1  Examples of the writing on walls and storefronts where green workshops are held, and on advertisements and announcements for the green workshops Spanish

English translation

DEFENDEMOS Y VALORAMOS NUESTRA TIERRA NO AL MAIZ TRANSGENICO Fuera Monsan†o REVOLUCION—EZLN—Paz— Silencio—y la resistencia #YO SOY 132

WE DEFEND AND VALUE OUR LANDS. NO GENETICALLY MODIFIED CORN Monsanto Outa REVOLUTION—Zapatista National Liberation Army—Peace—Silence—y and the resistance #I AM 132 (Referring to a social movement in Mexico that started in response to the abuse and silencing of college students who spoke out about political corruption.) What good are riches in the pockets, if there is poverty in the head?

¿De qué sirve la riqueza en los bolsillos, si hay pobreza en la cabeza? Para mí, la naturaleza es sagrada. For me, nature is sacred. The trees are my temples Los árboles son mis templos y los and the forests my cathedrals. bosques mis catedrales.

Note the holy cross which was included in the author’s original text is clearly a reference to the persistent role of the Catholic Church in contemporary Mexican society and politics. Monsanto is the American agricultural technology company affiliated with the proliferation of GMO corn and the use of agrochemicals in industrial agricultural systems a

important as the local social value. Sustainability contributes to the success and perpetuation of green workshops as they build cultural change via alternative economic and health opportunities, and continue to grow in social relevance. In the sustainable development goals, even the millennial development goals, we see multiple instances of sustainability, environmental impact, and climate change, being important areas of focus. Of course, in Mexico these are important areas of focus, but perhaps from a different reason or motivation. Whereas the sustainable development goals are administered by macro-level institution the United Nations, the green workshops in Mexico come from local grassroots. Through the voices of participants and facilitators of the green workshops it can be seen that these actors and groups are not isolated but are in fact part of a larger movement and ongoing interest in Indigenous culture, knowledge, and alternative models of health and community

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development across Mexico and globally. Though the specific historical context varies by location (see Boucher, 2019). For example, the primary goals of the food/health sovereignty to resist the rapid globalization through biomedical hegemony are evident through their shared purpose of not relying on outside companies or their products. The food/health sovereignty movement uses green workshops to promote wellbeing and resistance to globalization of healthcare from a grassroots level. Resistance in the case of the green workshops comes in the form of avoiding the use of biomedicine or industrially produced foods. Through the green workshops and other grassroots organizing, participants are actively asserting their identity and legitimate forms of health propagation. Intergenerational knowledge sharing helps ensure that the movement will endure for the long haul (Baines & Zarger, 2017). They do not often expressly seek to change the existing laws, for example, that prohibit the sale of many herbs and plants as medicines. Instead, as there are multiple layers of legitimacy and governance present in contemporary Mexico, they also operate within their own realm of legitimate health sovereignty. Their social capital is illustrated through increased knowledge and community networks.

Conclusion We can see sustainability at the local level in the food/health sovereignty movement. This movement represents a sustainable and robust response to stressors in the environment, economic stress, health stress, cultural and political strife, and other social problems. The green workshops build on the Indigenous and mestizo national identity in Mexico, including all ages, genders, and ethnicities in an effort to build greater grassroots autonomy. The self-described food sovereigntists in west-central Mexico have continued their work for more than a decade and could probably be considered successful due to their longevity. However, the central purpose remains a driving force: “We want to teach our people [mestizos] about their roots […] to not be dependent on outside companies”.

References Baines, K. (2015). Embodying Ecological Heritage in a Maya Community: Health, Happiness, and Identity. Lexington Books. Baines, K., & Zarger, R. K. (2017). ‘It’s Good to Learn about the Plants’: Promoting Social Justice and Community Health Through the Development

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of a Maya Environmental and Cultural Heritage Curriculum in Southern Belize. Journal of Environmental Studies and Sciences, 7, 416–424. Beezley, W.  H. (2008). In Mexican National Identity: Memory, Innuendo, and Popular Culture. Essay, University of Arizona Press. Beletsky, L. (2000, April 1). Environmental Threats and Conservation in Southern Mexico. Planeta. https://planeta.com/0004mexicotropics/ Boucher, N. (2019). Detachment and Commitment in the Competing Legitimacies Surrounding the Ephemeral Opposition to the Redesign of Viger Square, Montreal (Quebec). In I. Pardo & G. B. Prato (Eds.), Legitimacy: Ethnographic and Theoretical Insights. Palgrave Macmillan. Channa, Mitra S. (2023). Negotiating Power over Human Bodies: Populism, People and the Politics of Health in Delhi. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 7. Palgrave Macmillan. Godoy, E. (2015, October 29). Medicinal Plants Popular and Unprotected in Mexico. Inter Press Service. Retrieved November 16, 2021, from http://www.ipsnews. net/2015/10/medicinal-­plants-­popular-­and-­unprotected-­in-­mexico/ INEGI. (2019). Censo General de Población y vivienda. Principales resultados por localidad. Instituto Nacional de Estadística, Geografía e Informática. Lomnitz, C. (1995). Ritual, Rumor and Corruption in the Constitution of Polity in Modern Mexico. Journal of Latin American Anthropology, 1, 20–47. Niezen, R. (2008). The Global Indigenous Movement. In G.  Bailey (Ed.), Handbook of North American Indians: Indians in Contemporary Society. Smithsonian Institution. Olson, L. (2014). Indigenous Knowledge and Development: Livelihoods, Health Experiences, and Medicinal Plant Knowledge in a Mexican Biosphere Reserve. Lexington Books. Olson, E. A. (2016). “Using Plants as Medicines and Health Foods in Southern Jalisco.” In Plants and Health, 117–31. Springer International Publishing. https://doi.org/10.1007/978-3-319-48088-6_5 Olson, E. A., & John R. S. (Eds.), (2016). Plants and Health. Springer International Publishing. https://doi.org/10.1007/978-3-319-48088-6 Pardo, I. (2004). Where it Hurts: An Italian Case of Graded and Stratified Corruption. In I.  Pardo (Ed.), Between Morality and the Law. Corruption, Anthropology and Comparative Society. Routledge. Pardo, I., & Prato, G. B. (2019). Ethnographies of Legitimacy: Methodological and Theoretical Insights. In I. Pardo & G. B. Prato (Eds.), Legitimacy: Ethnographic and Theoretical Insights. Palgrave Macmillan. Paz, O. (1950). El Laberinto de la Soledad. Cuadernos Americanos. Perfecto, I., Vandermeer, J., & Wright, A. (2009). Nature’s Matrix. Linking Agriculture, Conservation and Food/health sovereignty. Earthscan.

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Torres-Mazuera, G. (2016). Deregulating the Social Life of Property: Neoliberalism and the Proliferation of Normative Dissonances in Mexico. The Journal of Legal Pluralism and Unofficial Law, 48(1), 58–74. Vía Campesina. (1996). Declaración sobre la Soberanía Alimentaria de los Pueblos. Cumbre Mundial de la Alimentación. II Conferencia Internacional de la Vía Campesina. Tlaxcala, México. [Web page]. Retrieved November 11, 2015, from http://www.viacampesina.org Ziglio, E. (2017). Strengthening Resilience: A Priority Shared by Health 2020 and the Sustainable Development Goals. World Health Organization Europe.

CHAPTER 12

Disabled People and Access to the Labour Market: The Case of Greece Manos Spyridakis

Introduction This chapter aims to identify barriers and discrimination practices through the experiences of people with disabilities themselves in the context of the Greek labour market. Although the Greek State in 2017 passed the law on the Rights of People with Disabilities, there are still problems related with the reproduction of social inequalities and discriminations at the expense of this group. Hence, whereas the legislation is currently oriented towards the rights and the social model approach to disability, there is no an all-­ inclusive and applicable definition of disability, which is why the medical model approach prevails among other things in the assessment of disability. Yet, this transitional phase reflects not only the perception of institutional thinking about disability but the way this perception may change through time and in relation to specific political and socio-economic

M. Spyridakis (*) Department of Sociology, National and Kapodistrian University of Athens, Athens, Greece © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 I. Pardo, G. Prato (eds.), The Legitimacy of Healthcare and Public Health, Palgrave Studies in Urban Anthropology, https://doi.org/10.1007/978-3-031-25592-2_12

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contexts, both at an individual and at a societal level. It seems that people with disabilities experience a limbo socio-economic status as the policies implemented regarding employment are lacking the necessary adaptability to the needs of this special social category. In other words, these people experience neither a full systemic nor a full social integration questioning thus the legitimacy of the legal positivism and legal realism (Pardo, 2000) interlinked with the main aspects of their lives designed for them as well as their full citizenship in an already unequal society. According to Shuttleworth and Kasnitz (2006) the last years have seen a burgeoning world political and academic interest in the study of impairment and disability. Although anthropologists have addressed the issue of disability in cross-cultural terms prior to the 1960s the anthropological focus on people with cognitive, behavioural, and physical differences emerged with Robert Edgerton’s (1993) work on people with “mental retardation” during the 1960s. Between the mid- to late 1970s and early 1980s a group of anthropologists and medical anthropologists including Joan Ablon (1981), Gay Becker (1980), Louise Duval (1984), and Nancy Scheper-Hughes (1979), among others, began publishing their work on people with various kinds of impairment-disability experience. In the early 1980s, Duval founded the Disability Research Interest Group of the Society for Medical Anthropology, which sponsors scientific sessions on disability at the annual meetings of the American Anthropological Association (AAA). The seminal works of Goffman (1968) and of Charmaz (1983, 1991) on stigma and on identity transformation respectively have opened various theoretical and empirical orientations on the disability research. The major development that emerged from these researches concerns the concept of “biographical disruption” propounded by Michael Bury (1982) and Arthur Frank (1985). This term refers to how disabled persons restore coherence and continuity because of the disjuncture created between the sense of being non-disabled person with a life story that is unfolding along the lines expected for an able-bodied person, and the sense of being disable with all constraints this condition brings. For Frank (1985: 57–63), narratives connect the “before” and “after” of the disablement by providing continuity and coherence and regulate what persons miss most: the temporality of their biography through which their “natural attitude” is constructed. Narratives come to manage this temporal rupture between past, present, and future once the sequentiality and coherence are

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undermined. The present is not where the past leads to but a place of struggle between past, present, and future. This is a moral issue since (a) it is persons’ responsibility to overcome this struggle and (b) suffering narratives have to retain a realistic element. However, various criticisms on this concept have been well documented (Williams, 2000). It has been argued that Bury ignores the extent to which the nature of biographical disruption varies with particular demographic characteristics, most notably age and class. People who acquire chronic suffering in older age often do not experience distinct ruptures in identity because they already anticipate increasing physical limitation and think about the trajectory of their lives taking this into account (Adamson & Donovan, 2005). A major advantage of “biographical disruption” is directly related to the embodied nature of disability. Capacity for action depends on one being “always already” situated in a familiar world (Tate & Pledger, 2007). The body and its practical relation to the world constitute the foundation on which our conscious experience of the world relies. In this view, the body is not just the “carrier” of the physical organism but is conceived as including its social relations. Hence, individuals “experience themselves simultaneously in and as their bodies” (Lyon & Barbalet, 1996: 54). Making thus sense of the ways in which embodiment is personal, specific to an individual, and is crucial for understanding how different individuals will experience bodily changes such as the onset of a disability condition (Thomas, 2010). Hence, Ι approach the term disability as referring to embodied conditions in which activities that are routinely performed by people are somehow restricted or cannot be done in accustomed ways. The term impairment refers to some disruption at the system level of a bodily organ leading to some loss or an observed abnormality that is physiological, psychological, or anatomical in nature (Lutz & Bowers, 2007). Impairments tend to be enduring, if not always permanent, problems, the products of disease or injury. The consequences of impairments are disruptions in cognitive, emotional, or physical processes. In contrast to disability and impairment, the term handicap refers to some obstacle imposed upon people by something in the environment preventing them from fulfilling some roles. Yet, “environment” is not merely a physical construct; it is also a shared, social construct, and can involve economic and sociocultural influences.

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Limited Citizenship People with disabilities (PWDs) are not just handicapped by physical barriers. They are also handicapped by social obstacles, such as the attitudes or beliefs held by other people (disabled or not) as well as by institutional settings limiting their rights whose legitimacy then is fully questioned (Pardo, 2000). Ι use the concepts of biographical disruption and of embodiment in order to highlight the social-relational and corporeal nature of disability and to depict it as an experience directly related to all the stages of a person’s life course. A number of factors contribute to disability within a life course approach (Heller & Harris, 2012), including (a) the age of onset of disability, (b) whether disability is a condition that can come and go, and (c) the fact that disability can also occur suddenly or gradually. Hence, the concept of biographical disruption is a core concept of the present research because it articulates three crucial and interconnected dimensions of disability: the embodied dimension, the social identity dimension, and the life course dimension because it takes into consideration the real and corporeal and not just the narrative grounding of disability, the emotional orientations towards self and others, and the differential experiencing of disability over the course of a person’s life. I consider that this theoretical emphasis is challenging because instead of focusing on qualities attributable to the person, especially presumed dispositional (personality) characteristics, I suggest approaching behaviour as a function of both the person and the total “life space” the psychological environment (again, real or imagined) in which the individual navigates. What follows from Gestalt psychology is that essentializing language matters. In the context of disability, language can be empowering or devaluing and it has implications for both the perceiver and the perceived. In practice, the emphasis on the person must come before the disability, which means that anyone, including medical and psychology professionals, should refer to a “person with diabetes” rather than a “diabetic”. By extension, people with similar disabilities should not be grouped together in everyday language just because it is easier to talk about “diabetics” rather than “people with diabetes”. In the first place, one person’s disability can differ substantially from another’s. A second challenge the research poses concerns the investigation of what are the classificatory schemes and attitudes through which each disabled person understands not only him/ herself but also the other disabled persons. In other words, the challenge concerns whether a solidarity bond among PWDs exists and, if this is so,

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it concerns the determinants of its nature. This is not a psychological issue but mostly an issue directly related to social identity and culture. The issue of social identity set apart, as it has been discussed previously, there are two approaches for theorizing disability culture with their key problems respectively. Firstly, there are those who consider disability culture to be about challenging the cultural representations of disability that exist within mainstream culture in order to achieve for disabled people the equal respect and value that is given to other members of society. Such a position with regard to disability culture clearly perceives that such cultural practices are not only about tackling stigma, but in so doing are also about increasing equality of opportunity and outcomes for disabled people. Whilst not denying the importance of such cultural challenges to mainstream prejudice, the question of whether such cultural strategies represent true cultural difference is a thorny one. It is important to note here, however, that questions surrounding who can legitimately claim to be a part of the disability culture are also of considerable importance. Gilson and Depoy (2000) have highlighted the way in which the question of who can be a part of the disability culture is a constant source of tension. They suggest that individuals within the disabled population may find themselves positioned against one another as political advantage is sought. Additionally, individuals who aim to become assimilated into the mainstream “normal” world may not choose to identify themselves clearly with the disability culture, but there are also other groups, for example people with a learning disability, who may also find that their cultural membership is unclear. This is unlikely to provide the basis for a shared and legitimated cultural context as it is full of ambiguities and contradictions regarding the way official rules and actual behaviours are perceived and understood across society depending on political context, forms of morality, and of course interest, either personal or collective (Pardo, 2000; Pardo & Prato, 2019). The second approach to disability culture is similarly problematic. For many of the authors in this field, like Oliver (1996), disability culture is about “celebrating” disability as “difference” (Shakespeare, 2002). This notion of celebrating difference is very much connected with the idea of the positive “disability identity”, and as such is equally contested. Critics of this approach have suggested that it is problematic to speak of “disability pride” and the “celebration of difference” in relation to the lives of people whose impairments are painful, debilitating, or even fatal. Adding to this debate is the argument here that whilst many people in this field

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would agree that the quality of life of many disabled people is gravely affected by social factors, medical factors and the political economy of the matter cannot be ignored (Anastasiou & Kauffman, 2012). In this light and considering the diversity of experience with regard to impairment, it would seem overly optimistic, if not insensitive, to talk about celebrating disability across the disabled population. The tendency of ignoring the very real reasons why some disabled individuals may feel unable to celebrate their difference is one of the key problems facing disability theory today. Yet, one should take into account that the last years disability is seen through the wider lenses of WHO, according to which health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. In this perspective, PWDs’ rights, their right to employment among other things, should not be assigned as favours based on a philanthropic viewpoint but in terms of full citizenship. Understanding the relation between disability and social reproduction where labour is one aspect, one has to take into account some of the basic parameters, reflecting stereotypical conceptions about disability, structuring the everyday life of PWDs, and reproducing their present status in Greece. These parameters are the crystallization of a top-down management of the main still unsolved PWDs’ issue: the equal social integration. Briefly put, as early as 2012 Greece has signed the UN’s Convention on the Rights of Persons with Disabilities as the result of the indigenous disability movement, an act echoing a series of legal interventions which on paper seem to improve PWDs’ life but in real life factors such as the last decade’s economic recession, cuts in the public spending, restrictions on the access in healthcare system, barriers in all kinds of accessibility, coupled with remote bureaucratic inflexibility, make them still appearing as a “special social category”. In view of this, state policy regarding PWDs in areas such as health, social integration, social justice, political participation, education, and labour market seeks to give the impression of a morally just and fair regulation facing chronic and unresolved problems. It is with, for this reason that mobilizes the administrative apparatus in exercising its power, as shown below, in order to win as much as legitimation as possible. However, as it is evident by interlocutors’ accounts there is a long gap between theory and practice. In other words, PWDs’ narratives show the levels of distrust to central administration as they deal with a “power without responsibility” (Pardo, 2000) during the “strong continuous interaction” between different aspects of existence (Pardo, 1996: 11) in trying to

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cope with it. Although PWDs recognize that their citizenship is dependent upon an insufficient power treating them wrongly as a homogenous group and acting as guarantor of their existence, they are “challengingly engaged in negotiating the terms of their condition” (Pardo, 2000). State-funded subsidies are the most prominent mechanism of Greek social policy for integrating PWDs and for protecting them from social exclusion. However, these subsidies are inadequate for their social reproduction. Most of those with activity/mobility restrictions are over 65 years old (60%), while the 45% of the disability population is over 70. Around 43% of households with at least one person with a serious disability face the danger of poverty or social exclusion. This affects more PWDs than the general population and it is even more serious for those over 55 years old. Four out of ten citizens aged between 16 and 64 years old with a serious disability suffer from severe material deprivation whereas the relevant picture in Europe varies and differs significantly depending on the policy followed (Grammenos, 2018). These data show clearly that PWDs are on the edge of poverty and marginalization which the state faces only partially (https://www.esamea.gr/publications). This ends up to unmet medical needs due to financial reasons, to long waiting lists, to spatial distance of the healthcare provisions, and to the disposable income. To this one must add that many benefits and services that are particularly important for people with disabilities are not covered by institutional regulations, while the deficiencies of rehabilitation services in the fields of “post” and out-of-hospital care are not adequately addressed. The lack of rehabilitation policy is the key issue in this dimension remaining unchanged throughout the years. In the labour market there is an employment gap, meaning that the percentage of difference between PWDs and the general population is extremely high for those aged between 25 and 54 years old. The 60% of PWDs aged between 25 and 29 years old are unemployed while 9 out of 10 PWDs aged 20–24 years old have no working experience. The major barrier PWDs face concern discrimination of various sorts, like stigma related either to employment or to losing legal capacity. Both of these discriminations undermine their citizenship since they are not given access to exert their rights and responsibilities issuing from the fact that they are citizens with full rights, putting in question the legitimacy of the traditional way of “democratic” decision-making (Pardo & Prato, 2019). In this light using biographical-narrative interviews will bring to the fore the relational and psychological mechanisms which affect PWDs life course as well as the extent to which a “power without

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authority” is legitimated by them. In that way one can access not only their real-life situations within which they construct identities and social relations, life plans, and deal with barriers of various kinds but can highlight the forming causes through which they live their life in specific ways and not others. This is an additional gain for implementing social policy initiatives which will address the life world experiences of PWDs.

Methodology Data has been collected by means of the Biographical Narrative Interview Method (BNIM) (Wengraf, 2001; Tsiolis & Christodoulou, 2020) because one can get first-hand knowledge as to how PWDs make sense of their self and live their life in specific contexts. BNIM is the most appropriate means of collecting data when one wants to explore life course processes of social groups. BNIM’s aim is not to analyse agents’ mental states or mental phenomena but to investigate the traces the social relations leave upon agents’ life courses. Biographical interviews are appropriate for studying social worlds or fields in which specific cultural practices are developed (Becker, 1982), for exploring turning points and critical biographical moments through which persons’ life is radically changed after these moments (Schütze, 1987) and for analysing what Daniel Bertaux (2010) has termed classes of social trajectories. Given the difficulty which exists in conducting a biographical-narrative interview with PWD, I contacted the household in which they lived. In such cases the interview has been carried out with the person who took care of the disabled person. Households have been located through the well-informed lists of the National Confederation of Persons with Disabilities. The research methodology lasted from 2019 to 2020 and combined primary qualitative data collection and was based on the following complementary pillars: (a) capturing the current situation regarding the presence of people with disabilities in higher education and the labour market and (b) bringing to the fore their experiences through eighty-seven personal biographical interviews.

People with Disabilities and the Labour Market According to the 2018 report, a particularly significant percentage of people with disabilities are outside the labour market, around 84%. This percentage shows a specific trend existing in the Greek labour market up to now, as an indicator of a chronic and stable condition. In general,

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according to the report, the employment of people with disabilities has the following characteristics: higher unemployment, longer duration of unemployment, higher percentage of part-time employees, higher risk of dismissal, employment in jobs that do not meet real skills, their experiences and ambitions, and finally lower wages (https://www.esamea.gr/publications 2018). In this context, it is of particular interest to ascertain whether or not these epigrammatic conclusions apply through the emergence of the voices of the people themselves. In other words, an attempt has been made to shed light not on the quantitative side of the issue of access to the labour market but on its quality; that is, the way in which disabled people have experienced and are experiencing the transition to employment and the labour market in general since their graduation from higher education institutions. Unemployed People with Disabilities A first general conclusion is that people with disabilities do not enter an easy field of activity. Although the degree of disability plays an important role, the labour market is not an easy task for them. As G, a 34-year-old law graduate born blind, explains when asked how the job market “welcomes” a person with a disability: Very phobic, especially if you are not an independent, freelancer, very phobic. The opportunities are not the same in any case.

Mrs A, a 39-year-old graduate of Panteion University with spastic paraplegia, explains what she faced when she asked for a job in a mental rehabilitation programme: As soon as he sees me, he is confused, he says: Teachers’ offices are downstairs. How will you go up the stairs? Unfortunately, I’m sorry I cannot employ you. I keep coming to the words of my teacher who said, “Since your start, my child, in your life you have lost half of your career game, because of your health only”. Unfortunately, this is how it is.

In a highly competitive work context, people with disabilities are perceived as lagging behind in terms of productivity and project efficiency. As Mr B, a 35-year-old PhD candidate at Athens University and former journalist, says:

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You know there is a very strong perception that because you are a person with a disability, the best all you can do is pick up the phones or sit in front of a computer and work in an office. The person with a disability in Greece is a weight.

Hypothetical productivity lag causes people with disabilities to constantly try to prove the opposite, mainly through their educational background. When asked how she is treated by the labour market, a 36-year-old graduate explained: It is very difficult and I am a person who really worked as a dog in my work in the good sense of the word. I never said you know the rights of the disabled … an hour less. I was the only one in my job who worked a rotating schedule.

Similarly, she analyses with acute brilliance the way in which while working she tried to distance herself from the organizational culture that prevailed in the workplace just to be able to prove that her diversity did not prevent her from being productive but that it gave her the ability to critically confront the existing status quo. She says: I will tell you. I am a woman who when I have my job, I do my job and I do not care what happens. I do not care. I abstained from gossip. Things were said against me but I did not pay attention. I had a hard time, I was fired.

The narrative of this interlocutor directly highlights their long employment breaks. In the current period these breaks are increasingly affecting a very large part of the active working population. However, in the case of people with disabilities, the problem is exacerbated by the fact that in addition to the lack of demand for work in general, their disability is perceived as a persistent obstacle. This condition results in either the devaluation of their qualifications or the abandonment of their effort. As the above interlocutor puts it: Let me just tell you this in order to paint it, unfortunately, that the disabled person and especially the one who has done some university course, that unfortunately while we have qualifications we lose our value from our appearance, from our movement and we want help.

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On the other hand, the very fact of disability is an unavoidable reality that cannot be ignored. Yet, the narrative of people with disabilities emphasizes the above-mentioned obstacles not to magnify the disability itself. On the contrary they seek to get what they really deserve and take on those responsibilities that better suit both their qualifications and the condition of their lives. The same interlocutor explains about the labour market: First of all, I do not want to rely on my disability to find a job, I want to rely on my strength, not my weakness, which means that since I have done so many things, I do not think anyone needs to give me more points because I have a disability, however, because we are talking about the general population and not just for me, it is clear that a person with a disability cannot, say, become a waiter or a builder, or to do a job that requires movement.

Indirectly, the above narrative develops a basically realistic argument regarding the perception that the disabled person does not have easy access in the labour market. In essence, access is difficult because, literally, the labour market itself is negatively biased. Its construction does not create equal opportunities, not only for people with disabilities but for almost all potential workers belonging to the category of so-called vulnerable groups. Similarly, Mr D, a 25-year-old with thalassemia, explains: It would be good to hire people. That is, to be put in areas that are needed and that of course these people can cope with and depending on the disability that each person has, I know that it is very good to offer so in certain posts I think they could join even more people, to give them a further opportunity for vocational rehabilitation.

Possibly the greatest difficulty and most serious obstacle to enter the labour market is related to the biased refusal of employment. Mrs E, 31 years old, with brain paralysis says: I went to the interview and they told me what do you do? I say I do theatre, I’m dancing, and I’m doing it. They say okay, the thing is that we cannot, no we cannot, that things are difficult for us, you will find it difficult to find a job, things are difficult and for you things are more difficult.

The interlocutor with spastic paraplegia states the following:

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I do not know. I see Greece analgesic and if you look at my bio it is not negligible both in terms of education and experience and, suddenly, they tell me that your qualifications do me but your body does not. It is like telling me that, this brain is carried by a sick body.

People with Disabilities Employed in the Public Sector This category includes people with disabilities who have entered the public sector either after special arrangements due to disability or after exams. In any case, these people present an employment trajectory which was not directly linked to employment in this sector. Several of them already had significant work experience in the private sector as well as of course good educational background. Yet, there are cases for which finding employment in the public sector was not a simple matter but the result of enormous struggling time and of great patience. Many of them are still looking for employment in the same sector as they work under short-term contracts, others are on the verge of retirement, and others are almost in the middle of their career on a full-time basis. Consequently, we are referring to a heterogeneous group which experiences in a different way both the work and the conditions under which it is carried out. Regarding working conditions, Mr F, a 29-year-old teacher with limited eyesight, states: I did not find it difficult to find a job, it is true. But in my first job, although the school was for blind people, the environment was bad. There was not the slightest understanding or support from most colleagues. Nobody helped me, they refused to show me things, except for two, and the rest were teachers without disabilities. And they were I can say hostile or rather indifferent to me. I had no support from my colleagues or the management. Fortunately, there is a subsidy for guide dogs. But in general, aids for visually impaired people, from the cane to anything that can make a person more autonomous require money, they are very expensive.

This interlocutor highlights the fact that, although she has a full-time job, she experiences obstacles at work that are not easily overcome, especially those related to her daily movement. On the other hand, she experienced the intolerance of her colleagues, an attitude that is more common in the private sector. This is probably better explained by a 30-year-old sociologist, who says:

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The main obstacle is the perception of the whole Greek society. The stereotypes that everyone has and people with disabilities and without, the stereotypes imposed on us by our family, the context, the television, that you must pay attention to what they produce on television, a beautiful image, without any imperfections. So, the person who has a defect is automatically sidelined.

Accessibility to employment is hampered by a number of practical issues which, however, over time create negative conditions for smooth integration into the workplace. The above informant explains: I also want to say if we can all fight together, people with disabilities should not be put in altogether because there is a law and this is good and we thank some people from our syndicate who fought harder but the law needs to be corrected, people with disabilities in the labour legislation are treated like having all of them the same problem. This does not exist. A person with cancer cannot be treated the same as another who suffer from diabetes, for instance.

Putting aside the fact that the law aims to rehabilitate a number of special population groups, one can easily see that this is exactly the problem. In other words, in the attempt to make easier the living conditions of the PWDs, the legislator creates direct discrimination in the categories he seeks to favour. To this one should add that the law does not work in vacuum. In order for one to get a job, it must have been advertised in advance, a process that does not happen very often. If, therefore, one takes into account the process described above in combination with the delay or non-announcement of relevant jobs, then it reasonably concludes that there are direct obstacles to the employment of people with disabilities. The same informant says: The vacancies that are coming out or I know are very few. Consider that the last announcement with this law was in 2008. There are a lot of peculiarities and a lot of things that are mixed up. The law criteria for hiring people do not apply for all posts because each office creates its own. In that way, even if one has some advantages, they do not count due to the different evaluation of each office irrespectively of the general law.

People with Disabilities Employed in the Private Sector If employment in the public sector shows difficulties, the private one proves to be much more so. Most of the interlocutors have been employed

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in state-funded programmes, such as the “three plus one” as well as based on their CV. Of course, this does not in any way imply job security and open-ended contracts. The main concern of the PWDs, through their employment trajectory, was and is to prove that they deserve equal treatment at all levels of their lives, including work. A 31-year-old who has been blind since birth explains: We in the disability movement fought for equal treatment, we fought this against society and against the policies that will be implemented so that we can have equal treatment. But, from the moment you claim it, claim it everywhere, both in your family and in your life. Many times, taboos and prejudices are a matter for us to break them because if we sit in our corner, we should not ask for help for others, we must take the first step.

The above quote indicates an attitude for active social integration which will not be done in terms of compassion and charity but on the basis of personal struggle and the dignity of the individual. The above interlocutor is a Law professional and is implying that precisely because the person with a disability is a priori treated unequally in the labour market he/she needs to make a double effort to prove that he/she deserves the post he/she gets and that his/her career path has not been given to him/her but earned. A similar view is expressed by X, a 48-year-old graduate of the School of Agriculture who is in the final stage of kidney disease: The labour market is closed for people with severe disabilities and chronic diseases and when I say closed, I also mean in terms of knowledge. Despite the supportive measures that exist by the ministry in order to employ a chronic patient or a person with a disability, the doors are closed.

He describes a relentless reality that prevails in the Greek labour market for people with disabilities. Job integration programmes seem to be a temporary but not effective solution to the problem that concerns us in this part of the analysis. He also goes on to try to explain the reasons for the employment exclusion of people with disabilities: I think it is due to two reasons, the first is that many companies are led to layoffs with the result that everyone does everything and I know this quite well and there is no workplace for a person with a chronic illness and the second is if the company is private has the money to cover 60% of the cost of a person with a disability because the remaining 40% is covered by the

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Greek state, these are the main reasons. It is in the private sector we face the major exclusion from work. Today there is a feeling that people with disabilities cannot offer equal value to the company.

The above interlocutor having already work experience in a multinational company clearly states the reasons for dismissal focusing mainly on costs in combination with new developments in the labour market which is becoming more flexible at the expense of the supply side in general. To this, one must add the fact of the way in which the stigma of being a disabled person affects him. He says: So, it is and there have been adjustments in a company for the functionality of a person with a disability, for a very basic reason because in our country unfortunately serious private companies are very few, most are small and medium enterprises where the boss is both an employee and a manager and a human resources assistant and these people are quite afraid of employing a young man with disabilities especially in case these emerged after his studies.

The most eloquent process of dismissal from employment concerns cases which, although already one had a work experience, he/she is forced to dismiss. X explains: When I entered the dialysis, they stopped me immediately and then the one who was then the director of our company told me that, while we were here, they could not fire me because there was a law protecting people with disabilities but they told me that I would stay stagnant in an administrative position and then I did what was required by law to retire.

Indirectly but clearly, therefore, the company attempted to dismiss him. It seems that for managers a disabled person is by definition incapable of work. To this one should add the difficulties faced by PWDs during their employment creating a kind of revolving door phenomenon. This clearly creates a fertile ground for exploiting the fact of disability. As Y, a 34-year-old kidney transplant patient, puts it when asked about the relation of labour market to recruitment processes: There is a taboo issue, from society but from ourselves as well. In the majority of cases people are not hired through the various programmes due to two reasons. First of all, there is no proper information for both the employers and the people with disabilities, and even if there is, they have a bad experi-

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ence from previous recruitments because we often take advantage of some situations and put our disease in priority. We do not work and sit down doing essentially nothing. These are bad experiences that stigmatize us and of course a businessman takes it negatively to get a person with a disability back to work.

On the other hand, the same person specifies his view on the employment integration of people with disabilities, referring to the new possibilities that technology opens up. As he explains: People with disabilities could work with forms of teleworking so that they do not have to be in a workplace with a fixed schedule that will make it difficult for them and technology helps a lot in this.

Along with the use of new technology, an important role in preventing employment exclusion is played by informing companies about the job opportunities of people with disabilities. This issue has been highlighted by almost all informants and is one of the most crucial points for broadening their employment horizon in the labour market. Self-Employed People with Disabilities The issue of people with disabilities who are self-employed does not differ significantly from the other categories mentioned. The barriers they encounter when accessing work are almost similar; however, the difference is that they are in the difficult position of constantly trying to support both themselves and their work course. In most cases this support would be impossible without the care and attention of their close kin. On the other hand, the working life of people with disabilities is of great variety as they have experience from a series of workplaces. As H, a 35-year-old born blind lawyer, explains: It was not easy to find a job in a law firm. After a period, I was hired as an advisor to the Deputy Minister of Health and Social Solidarity in 2009, and I have also dealt with issues of adult education; i.e., I had cooperation with the Institute, which still goes on, i.e. is not on a regular basis, and I have made presentations to public administration officials, organized by the Training Institute. I have taught at technical schools, again on issues of legislation, gender equality, and in some seminars organized by the national confederation of people with disabilities on issues related to legislation on people with disabilities. These are more or less.

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She analyses the reasons why she considers access to the labour market difficult: In general, yes, there are difficulties and obstacles, because there is a scepticism, I would not say racism, there is a reservation from employers and people who do not come in contact with people with disabilities, to trust people with an eyesight problem professionally, because he tells you I want you to have the best possible results in the shortest possible time and this may stick a little to them. Technology may help.

Technology as stated may be a way to remove the existing prejudices. Yet, the labour market is particularly difficult for people with disabilities even if they work in a relatively safe environment. A typical case is that of a 32-year-old man with an eyesight impairment who worked in a multinational and was forced to resign when his disability was revealed. He says: The bosses started not behaving well because they were afraid for others because they were thinking, if he is treated better than the others then this might create a domino for us, he is a little more relaxed, we do not push him because the guy has the problem but the others will start relaxing as well, so we do not want him in our team, you understand what I mean. And the younger ones, on their part, started a boycott, so to speak, and the older ones, on the other hand, started behaving so strangely, and then I was forced to leave.

Conclusions The analysis of the selected narratives brought to the fore that people with disabilities are still perceived by the labour market in an “old-fashioned” way as non-healthy or as semi-healthy human beings. This fact depicts the still strong viewing of the disability protection system through the lens of the medical model putting the blame to disability agents, while the qualitative criteria for assessing the obstacles faced by them are often absent which, however, are crucial dimensions structuring the social life of this group. Hence, the legislative framework for access to social security and welfare benefits system, but also special provisions of the national legislation related to positive measures in education, employment, and so on are often linked to medicalized criteria ending up in a kaleidoscopic and partial welfare policy. This policy focuses particularly on “care”, essentially pushing the “freeing” of disabled people from the ordinary burdens of

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society, among which is employment. A result of this view still is the excessive focus on the provision of vocational training and benefits. This condition creates false divisions based on unstable measurements about who is recognized as disabled or not, which, however, play the most important role affecting the lives’ trajectories of people with disabilities. At the same time this medicalized system of selecting the “deserving and undeserving” state’s subsidy protection is crumpling, made worse after the ten years’ economic crisis Greece has passed through. The austerity measures imposed by the Troika on the Greek State seriously affected the public healthcare system in a period where the rates of citizens with mental health problems are increasing rapidly. Yet, if the public healthcare system has been seriously damaged and it is unable practically to help the augmented mentally ill, what kind of care will be provided for those with chronic ill or for disabled persons? To this rhetoric question the cynical answer is the adoption of a policy resulting in a disability culture composed of fatalistically created barriers in actual life. It is in this connection that the narratives showed the causal mechanism of this condition. A first general conclusion which, however, permeates the current situation in the Greek labour market concerns the dominant component culture through which people with disabilities are treated: these people are viewed not as productive and efficient as the competitive labour market context demands and as people without disabilities try to be. This perception creates conditions of discrimination and inequality because it is formed as an a priori condition which obsessively stigmatizes people with disabilities. As a matter of fact, these people face barriers in accessing employment due to the stereotype against them, that is disability as such is considered as an unsolvable issue; it is a given, an indisputable “truth”. Yet, the narratives have shown that this perception does not turn them into passive or fatal puppets but mobilizes them to the opposite condition; that is, with the appropriate support and adaptation of working conditions to their special needs, people with disabilities can and do offer the same volume of productive labour just like any potential worker. The main means by which people with disabilities try to overturn the stereotypical image for them is striving to get more education, training, and skills. This practice aims to strengthen their self-image and self-confidence on the one hand and on the other hand to create those conditions making them able to claim the position they want and deserve in equal terms in the labour market.

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At the same time, the interviews highlighted the almost complete absence of provision of the so-called reasonable adaptation of the labour market to their needs. According to Logaras (2013), “adaptation” is considered “reasonable” when: (a) it is justified by the category and degree of severity of disability of the specific employee to whom it is addressed and (b) it does not create a disproportionate burden on the employer, that is, its cost does not create a financial problem in the company/service/organization. Logaras (2013) argues that the difference between “accessibility” and “reasonable accommodation” is that the former concerns all persons with disabilities as a group, while “reasonable adaptation” is about singular cases. Therefore, “reasonable adaptation” should in no way be considered a substitute for accessibility or even identified with the measures taken to ensure it, because their individual nature does not ensure that the needs of all people with disabilities are met. Although the application of reasonable adaptation is mandatory by law, this is far from being the case which results in the reproduction of both the stereotype of unproductiveness and the creation of even more obstacles in accessing employment. Hence the most serious barrier to accessing labour market is the constant denial of employment which people with disabilities experience extremely negatively as rejection, marginalization, and hypocritical meritocracy. Potential employers basically refuse to hire them in advance without having previously checked either their qualifications or their merit. This results in either long-term unemployment or long employment intervals. It is no coincidence that so far there is no up-to-date database of the employment status of people with disabilities from any official organization, as the prevailing view is that the state benefits they get (not all of them of course depending on the disable percentage) is “something” important. As the interlocutors have shown, the benefit is indeed an important aid, but it by no means can replace the socializing role of work and employment in general. Thus, people with disabilities are forced to work mainly in jobs that do not correspond to their qualifications or not at all. There seems to be a condition of obligatory choice for them, as if they are punished for a situation which, however, they did not choose for themselves. On the other hand, the provisions of the relevant legislation are perceived as problematic, although it is recognized that they are a significant success of the disability movement in this country. However, the narratives have shown that the law literally “accumulates” PWDs in the category of vulnerable social groups resulting in that they are treated as a “weak”

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homogenized group. At the same time, although it is the obligation of the state to advertise and to promote jobs for people with disabilities, this is being circumvented in practice by pushing them to literally survive through the state benefit or through the support of their family. In addition, there are no essential provisions caring for personal assistance during employment as well as no monitoring and sanctions for those employers who unnecessarily, as mentioned, refuse to hire people with disabilities. Hence a “state” of distrust is being created since as with impairment “[…] power is seen to be exercised with insufficient or absent concern with the fundamental responsibility of guaranteeing the rights of citizenship” (Pardo, 2000: 7). This condition goes hand in hand with the fact that most employment programmes involve occasional forms of work and are extremely sporadic, effectively thus recycling the problem. Simultaneously, the above-­ mentioned accumulation in the category of the vulnerable group hides the significant differences that exist in-between people with disabilities, which result in a parasitic type of practice by certain categories of people with disabilities but also in a kind of charitable reassurance from the state as it considers that in this way it exhausts the scope of its obligations towards an extremely unjustly treated social group in terms of employment. In addition, employed PWDs experience barriers and discrimination while working as they are not considered fully productive. Thus, they are assigned minimal specialization tasks. As for the private sector, which has generally turned its back to these people, the disabled person must make a great effort to be able to prove that he/she can meet the demands of a given hard labour market. Besides, indicative of the situation is the fact that the new technologies that could be handled by these people are not used at all in this perspective while public sector does not create the conditions for their employment assistance, such as business support, for instance, “widening the gap between rulers and the ruled” (Pardo, 2018: 16). It follows that people with disabilities experience barriers to accessing employment, while being in it and of course to their well-being as the main aspect of their health status. This is a condition that they have not chosen and at the same time try to overcome it, being unprotected with the sole support of their personal will and their family context. Hence, the rhetorical question still remains as who is really disabled, these people or the society that excludes them?

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References Ablon, J. (1981). Stigmatized Health Conditions. Social Science and Medicine, 15B, 5–9. Adamson, J., & Donovan, J. (2005). “Normal Disruption”: South Asian and African/Caribbean Relatives Caring for an Older Family Member in the UK. Social Science & Medicine, 60(1), 37–48. Anastasiou, D., & Kauffman, J.  M. (2012). Disability as Cultural Difference: Implications for Special Education. Remedial and Special Education, 33(3), 139–149. Becker, G. (1980). Growing Old in Silence: Deaf People in Old Age. University of California Press. Becker, S. H. (1982). Art Worlds. University of California Press. Bertaux, D. (2010). L’enquete et ses methodes. Le recit de vie. 3e ed. Armand Colin. Bury, M. (1982). Chronic Illness as Biographical Disruption. Sociology of Health & Illness, 4(2), 167–182. Charmaz, K. (1983). Loss of Self: A Fundamental Form of Suffering in the Chronically Ill. Sociology of Health & Illness, 5, 168–195. Charmaz, K. (1991). Good Days, Bad Days: The Self in Chronic Illness and Time. Rutgers University Press. Duval, L. (1984). Psychosocial Metaphors of Physical Distress among M.S. Patients. Social Science and Medicine, 19, 635–638. Edgerton, R.  B. (1993). The Cloak of Competence: Stigma in the Lives of the Mentally Retarded. University of California Press. Frank, A. (1985). The Wounded Storyteller: Body, Illness and Ethics. University of Chicago Press. Gilson, F.  S., & Depoy, E. (2000). Multiculturalism and Disability: A Critical Perspective. Disability and Society, 15(2), 207–218. Goffman, E. (1968). On Stigma. Notes on the Management of Spoiled Identity. Penguin. Grammenos, S. (2018). European Comparative Data on Europe 2020 & People with Disabilities. ANED—Academic Network of European Disability Experts. Heller, T., & Harris, S. (Eds.). (2012). Disabilities Through the Life Course. Sage. Logaras, D. (2013). Work, Employment and Disability. ESAMEA. (in Greek). Lutz, J. B., & Bowers, B. J. (2007). Understanding How Disability is Defined and Conceptualized in the Literature. In A.  Dello & P.  W. Power (Eds.), The Psychological & Social Impact of Illness and Disability (5th ed.). Springer Publishing Company. Lyon, M.  L., & Barbalet, J.  M. (1996). Society’s Body: Emotion and the ‘Somatization’ of Social Theory. In T.  J. Csordas (Ed.), Embodiment and Experience. The Existential Ground of Culture and Self. Cambridge University Press.

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Oliver, M. (1996). Understanding Disability: From Theory to Practice. Macmillan. Pardo, I. (1996). Managing Existence in Naples: Morality, Action and Structure. Cambridge University Press. Pardo, I. (2000). Introduction. Morals of Legitimacy: Interplay Between Responsibility, Authority and Trust. In I.  Pardo (Ed.), Morals of Legitimacy. Between Agency and System. Berghahn. Pardo, I. (2018). ‘Legal’, Obnoxious and Unfair: Eroded Legitimacy of Governance in Naples. In I. Pardo & G. B. Prato (Eds.), Ethnographers Debate Legitimacy. Urbanities-Journal of Urban Ethnography, 8(Suppl. 1), 16–22. Pardo, I., & Prato, G. B. (2019). Ethnographies of Legitimacy: Methodological and Theoretical Insights. In I.  Pardo & G.  B. Prato (Eds.), Legitimacy. Ethnographic and Theoretical Insights. Palgrave Macmillan. Scheper-Hughes, N. (1979). Saints, Scholars and Schizophrenics: Mental Illness in Rural Ireland. University of California Press. Schütze, F. (1987). Das Narrative Interview in Interaktionfeldstudien I. Fernuni-­ versität in Hagen. Shakespeare, T. (2002). The Social Model of Disability: An Outdated Ideology? Research in Social Science and Disability, 2, 9–28. Shuttleworth, R., & Kasnitz, D. (2006). Cultural Context of Disability. In G. Albrecht (Ed.), Encyclopedia of Disability. Sage. Tate, G.  D., & Pledger, C. (2007). An Integrative Conceptual Framework of Disability: New Directions for Research. In A. Dello & P. W. Power (Eds.), The Psychological & Social Impact of Illness and Disability (5th ed.). Springer Publishing Company. Thomas, C. (2010). Medical Sociology and Disability Theory. In G. Scambler & S.  Scambler (Eds.), New Directions in the Sociology of Chronic and Disabling Conditions. Assaults on the Lifeworld. Palgrave Macmillan. Tsiolis, G., & Christodoulou, M. (2020). Social Causation and Biographical Research: Philosophical, Theoretical and Methodological Arguments. Routledge. Wengraf, T. (2001). Qualitative Research Interviewing: Biographic, Narrative and Semi-structured Methods. Sage. Williams, J. S. (2000). Chronic Illness as Biographical Disruption or Biographical Disruption as Chronic Illness? Reflections on a Core Concept. Sociology of Health & Illness, 22(1), 40–67.

Electronic Sources https://www.esamea.gr/publications https://www.esamea.gr/publications/others/3732-­2 o-­d eltio-­p aratiritirioy-­ thematon-­anapirias

CHAPTER 13

Managing Public Health in a Fragile Consociation: Lebanon Between Wars, Explosions and the Covid-19 Pandemic Marcello Mollica

Prologue A few weeks after the end of the war of 2006 between Hezbollah1 and IDF,2 I organized fundraising at the University of Kent, then my employing institution, and in my home province of Sicily in Italy (through the Catholic Diocese and some local administrations). Back then, I had frequent contacts with the people with whom I had experienced that war in a Christian enclave on the border with Israel. I was trapped there for almost three weeks while doing fieldwork (Mollica, 2008; 2014a). In recognition of the transactions that I transferred to the municipality of the 1 2

 Hezbollah is a Lebanese Shia Islamist political party and militant group.  IDF stands for Israel Defence Forces.

M. Mollica (*) University of Messina, Messina, Italy e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 I. Pardo, G. Prato (eds.), The Legitimacy of Healthcare and Public Health, Palgrave Studies in Urban Anthropology, https://doi.org/10.1007/978-3-031-25592-2_13

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village, I received a receipt and a letter of appreciation signed by the Maronite mayor of the village that I have kept. The letter, which made my father extremely proud, now stands in a silver frame in my parents’ living room; there also stand the parchment certificate of my doctorate, though confined in a corner for it never attracted the same attention as the letter. In the receipt, on the other hand, all the medicines that the municipality had bought from a pharmacy of another village were detailed. During the war, gathering medicines was a major problem together with supplying milk for children. Indeed, one of the last photos I took a few days before my evacuation from Lebanon via a humanitarian corridor organized by the United Nations Interim Force in Lebanon (UNIFIL) was precisely that of the deputy mayor who, sitting on the ground, was making a list of all the medicines that were needed in the village. He then organized a car trip to a nearby Sunni village where there was a pharmacy to get the medicines, obviously previously alerting UNIFIL and (indirectly or directly through them both) the Idf and Hezbollah. But since the village had already been repeatedly hit, there were no certainties about that journey. The journey of that (Christian) car was however emblematic of a fractured country well beyond, and before, the summer of 2006 war. It was a mirror of a sectarianism that not even the war had managed to appease. On the one hand, the war meant that Christian and Shia communities, those most affected by the conflict, were helped not only by their co-­ religious but also by other communities, that is, Sunnis, Druze. On the other hand, the municipalities remained as sectarian as before, divided by religious affiliations which were topographically changing while changing the village and, by extension, what was within their borders. In other words, a pharmacy in a Shia village remained nominally Shia, a butchery in a Sunni area remained nominally Sunni and a Christian restaurant in a Christian area remained Christian. The fact that these settings were attended also by other communities did not diminish their religious affiliation which went far beyond the divisions codified by the legacies of the personal statutes, penetrating every domain of social life, such as butcheries, restaurants and eventually pharmacies and the healthcare system.

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Introduction This chapter aims to address informality and informal exchanges in terms of morality (Pardo, 2000; Pardo & Prato, 2019) as well as legitimacy to trust or lack of trust towards the state and the religious communities. It builds on previous works in the region, where this author examined the sectarian divide in Lebanon, the international extensions of the various religious factions and the fragmented nature of the Lebanese political identity (Mollica, 2009; 2019). Its departure points are the in-built sectarian divide and the transnational dimensions of the religious factions that characterize the fragmented nature of the Lebanese political identity. A diachronic approach coupled with ethnographic evidence will help to shed light on the repeated dichotomy that emerges when the country encounters periods of crises. This is analysed via the relationship between the overarching National consociational model and local-level governance and practices by reference to the management of public health, especially during the Covid-19 pandemic. On the one hand, this will be scrutinized through a historical explanation of the different phases of the Lebanese health system and its structure. This can be discerned in the way structure and treatment are recognized as legitimate when applied to treatment and in the types of health issues Lebanese political parties confront. On the other hand, the role of religiosity (sectarianism) in the management of public health will be examined, particularly framing the long-standing ethno-religious tension in the ethnographic context of the Pandemic to assess the role of religious sectarianism in the interpretation of the state’s legitimacy. Ethnographic evidence on the issue of public health as well as a synthetic historical explanation about the different phases of the Lebanese health system will construct the background framework. Nevertheless, the discussion of factions and Lebanese politics will be linked to ethnographic details about health issues mostly by reference to the Maronite community. Multi-level public health government will be contrasted with three dramatic events that took place in Lebanon’s political life in the past twenty years, which, in turn, enhanced inter- and infra-confessional socio-political tension. Firstly, the Hezbollah-Israeli War of 2006. Secondly, the spread of the Covid-19 pandemic. Thirdly, the tragic explosion that pulverized vast quarters of Beirut on 4 August 2020. The three events threatened both inter-religious and nation-local tolerance while also disrupting local equilibria. They had an impact not just on the health of the general population, but proved that situations change when the (religious) actors

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involved change. Indeed, they provoked turbulent repercussions that the conflicting relations between religious denominations express until this date, which affect the local health system. In particular, the impact of Covid-19 deepened the sectarian chasms. Meanwhile, the successive disasters mitigated, albeit only temporarily, the fragmented situation for the sectarian groups, before those groups fell back quickly on their divisive practices that preclude the formation of a single inclusive nation. Here, the notion of national unity, juxtaposed against sectarian divides, can be illustrated in the way health services are rolled out as well as the necessity of breaking the law in exceptional circumstances. The chapter will also suggest parallels with cases of other equally fragmented nations, where decentralized areas are being treated differently by the centre that has, for example, acquired all the rights to assessing the vaccines and their distribution (e.g., the Indian case discussed by Channa, 2023). However, similar discrepancies, albeit not for religious but for structural and governance reasons, can be found in both Italian (e.g., inequalities between segments of the population to the detriment of people treated as “second-class citizens”, as indicated by Pardo, 2023) and American contexts (e.g., inequalities between states brought out by Arnold, 2023). The cognition of the moral universe as situationally constructed following immediate needs rather than unchanging universal principles is also paralleled in India (Channa, 2023). In Lebanon are also involved “valuable” such as votes. This is explained by the fact that citizens do not trust states’ bureaucracy. This is quite manifest when official statements leave ambiguities in their interpretations, allowing political-­religious parties and factions to act divergently among themselves and towards national authorities. In practice, the doctor-patient relationship will be analysed diachronically. This will help framing the picture about how the Lebanese society conceptualizes health and health care and the extent to which religious groupings have the ability to intervene in this relationship. Thus, how religious views influence health approaches? How do they relate to lay beliefs about health care and illness, or better, impose their power when the problem comes to real life? In turn, this will allow to explore how the healthcare system is structured in political terms, how decisions are made and what is, for instance, the role of the private healthcare sector. The above will finally help understanding the way social inequalities (linked mostly, but not exclusively, to religious factionalism) are being formed and how they influence access to healthcare services. If in Lebanon, at least to

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a certain extent, religious dogmas seem to rule the mosaic-like society, then one can wonder, do community relations help people’s health care or not? In this “mosaic-like situation”, health services (e.g., ambulances or hospital-care) are thus delivered in different ways across several areas of the country. In such a frame, one wonders, what is the role of the civic society? For instance, how do non-state institutes (e.g., NGOs, charities, philanthropic organizations) operate in relation to health care and the official health system? And, even more, how do Lebanese diaspora around the world help in the health areas? This is thus a situation in which different groups fight over limited resources and this is most manifested in times of crisis or emergency, in turn weakening already weak communities. The role of the community and the power of tight-knit groups will here lead to the question: do community relations help people’s health care or not? The question will of course bring back to the original question about the issue of legitimacy; for example, legitimacy versus legality, thus requiring an understanding of informality and informal exchanges in terms of morality and legitimacy as well as linking legitimacy to trust or lack of trust, which in the Lebanese context means trust towards the state, the international community and the religious community itself.

Theorizing Consociational Legitimacy During this author’s field work, several stories and anecdotal evidence of vote bargaining in exchange for (mostly infra-religiously defined) support were collected. The practice is well illustrated by Melani Cammet (2014) who shows that individuals’ activism with a political party ensures greater access to finance for health care than non-politically affiliated persons. Political parties broker access to health care by interceding on behalf of their supporters with the minister of public health, the syndicate of pharmacists and doctors and privately owned clinics and hospitals. This brokerage of services in health care can increase the degree of intra-sectarian party competition. For instance, some Lebanese Christian political parties stepped up their inter-party competition for the loyalty of supporters in their constituencies by building a mutual fund programme where subscribers gain access to healthcare services and private insurance schemes at discounted prices (Cammet, 2014; Helou, 2020). The Lebanese healthcare sectarian dynamics echo the turbulent repercussions that the conflicting relations between the main religious sects and denominations (Shia, Sunni, Ismaili, Maronite, Greek Catholic, Greek Orthodox, Armenians,

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Druze) convey until this date, affecting the local healthcare system. In such a frame, the customary struggle for power, historically along with the interventions of foreign stakeholders, created the preconditions for both its functioning in terms of informal exchange being at the edge of illegality and corruption. It is according to this view that these practices must be understood, especially for a country where offices are regulated according to conflicting religious dogmas. Italo Pardo argues that “we need to understand, with Weber, that the authority to rule depends on recognition of rulers’ legitimacy across society” (Pardo, 2000 quoted in Pardo & Prato, 2019: 1–2). Still, legitimacy’s “contours may change over time alongside changes in people’s values and moral expectations” (Pardo & Prato, 2019: 3). In such a frame, “political and governmental bodies that fail to respond to the instances of citizenship [contributes] to widening the distance between rulers and the ruled” (Pardo & Prato, 2019: 5–6). As a consequence, “when rulers lose legitimacy […] their power loses authority and turns into authoritarianism” (Pardo & Prato, 2019: 6). This is of course more virulent in democratic societies (ibidem). But this was manifested in the Lebanese context, specifically during the ongoing Covid-19 pandemic. Actually, if we take the history of modern Lebanon, this has been marked by a long history of tensions both among and within the various religious sects and denominations to which a share of power is traditionally given, and the overarching national structures. The friction has been more manifest when power has been allocated to key political figures in accordance to the power-sharing agreements that define and limit the competencies of each religious group. This follows a consociation model based upon religious affiliations and not by democratic electoral rules. Such a consociational model has taken a sectarian path that accommodates transnational (religious) loyalties in Lebanon. These transnational loyalties are often stronger than national loyalties (e.g., Sunni economic elites are loyal to Saudi Arabia, while the Shia elites are loyal to Iran). The tension is directly proportional to the way in which foreign money has been allocated internally and, even more, to the way in which such allocation has been legitimized is manifested in this author’s ethnography in South Lebanon that shows how Hezbollah’s post-conflict strategies of reconstruction have been legitimated (Mollica, 2009; 2014b). However, these strategies have slowly eroded both the rule of law and its interpretation (Mollica, 2019). This was for instance the case by reference to the tension that followed the support that Lebanese communities received after the

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2006 war (Mollica, 2009; 2014a). More recently, it was also the case by reference to the rhetoric that followed the introduction of Covid-19 vaccines in Lebanon. But this seemed also to be the case by reference to the way Lebanese diasporic communities have reacted after the summer 2020 explosion of the Beirut port. This process becomes highly visible when communal loyalties overcome individual needs, thus bypassing state legal codes (Mollica, 2019). Given the perceived absence of the state, previously illegal customary actions are regarded as legitimate and are believed to carry the same weight as formally legal actions (Mollica & Dingley, 2015), as the sectarian reactions to the Pandemic have recently shown. Indeed, fractions reproduce themselves, the health sector included. The doctor-patient relationship shows how the local relation can help formulate a better picture of the societal conception of health, health care and the degree of local factions’ intervention in this relationship. Here religious factions seem incapable of completely imposing their power in actual situations. In such a turbulent context, the healthcare system, structured in ethno-religious political terms, generates decisions that impact the role of the private healthcare sector. In turn, social inequalities are being formed in terms of access to health care. The combination of corruption and the euphemism of power—that is, religious dogmas—inspire the rule of factional politics in a mosaic-like society. The public health management threatened the already fragile consociational Lebanese construction. Actors, such as NGOs, will often complement the state and replace poorly executed state services. Even then, they will depend on religious dogmas and must follow (internal and international) religious lines.

Traversing the Risks of the Consociational (un)Order Since 2006, I have never stopped collecting data on Lebanon. Even though my command of Arabic has become weaker, I conduct interviews in English or French, a testament to the multi-lingual nature of Lebanese society. Thus, I keep regularly talking with my old informants, including then deputy mayor. However, given the impossibility of doing field research in recent years due to the Covid-19 pandemic (my last presence in the field was in 2018) we often speak on Skype. So, we have recently re-discussed that 16-year-old photo in light of the last Lebanese events. That photo was taken during the third week of the July 2006 war. A few

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days later, the situation worsened. Local authorities had to ration bread because the heavy bombing closed their village bakery and thus required them to travel to the neighbouring Shia village of Naqoura (UNIFIL headquarters) for bread. This journey was only carried out every three days during the war. Then, there were 711 persons in the village (at the end of the war 83 houses were hit); most of these individuals gathered in three kinds of shelters (two churches and the cellar of a villa). In parallel, medicines were becoming scarce. These individuals were then told to go north of the Litani River (the Blue Line Zone) to get medicine. Yet, it was impossible to go there because all main bridges had been bombed by the Idf. Locals’ relatives living in Beirut and some NGOs, including the Red Cross, had indeed sent medicines for them but they were stuck north of the Litani. It was a week later that they could finally get the medicines. In our last Skype call in June 2021 the vice-mayor recalled that some 50% of the medicines in the list were for people who had chronic illnesses such as blood pressure and cholesterol. But once we were done commenting on that old photo, I explained the new research project in which I am involved. He was highly pessimistic and shared all his doubts about the way Lebanon was reacting to the pandemic. We have no government today; we have no politicians. In 2006 we had a government, we had money, people could buy medicines, today because of the corruption we have no money, nobody can help. (former vice-mayor, June 2021, Skype call)

My informant was critical about the contemporary political vacuum in Lebanon. Shockingly, he thought that the situation today is worse than during the 2006 war between Hezbollah and the Idf, since Lebanon enjoyed a functioning government then. In terms of responsibility, once again, exogenous (Kerr, 2005) factors emerged, matching a long-lasting narrative. The former vice-mayor accused not only the Lebanese political elite, but also blamed other countries because they were not providing Lebanon medicines. My friends are dying because they have no oxygen machines. What are the big countries doing, we need them to bring medicines to the Lebanese people via their [italics added] NGOs? (former vice-mayor, June 2021, Skype call)

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He was blaming the major powers, both regional and international, because, for him, they were choking the Lebanese people while attempting to punish the Lebanese politicians. Indeed, a number of Lebanese politicians (both Christians and Muslims) are today involved in huge scandals as illustrated by their classification on the black lists of several Western powers. Among them, the USA Government has imposed sanctions on the former Minister of Foreign Affairs and President of the (Christian) Free Patriotic Movement Gebran Bassil. Bassil is believed to be a potential candidate to replace his father-in-law, Michel Aoun, who is the President of the Republic. In a similar fashion, the European Union has recently suggested that even the Christian Riad Toufic Salameh, Governor of the Lebanese Central Bank, might face the same political fate (Chulov, 2021a). On a communal level, the incapability of the political elite had a devastating impact. We live in chaos; people are taking lots of anti-depressants. There are black markets everywhere; it is a jungle. Even if vaccinations are now getting somehow available, people get drunk and use drugs. (former vice-mayor, June 2021, Skype call)

However, the main issue for the former vice-mayor was corruption. He added: “Even the managers of the NGOs in Lebanon are corrupt.”

Moreover, sectarianism continues to thrive unabated. This is more visible in decentralized areas, where the consociational construction meets real life and life is experienced at local level in (religiously) communal defined areas. Here sectarian dynamics are at work and local customs are deemed legitimate and often predominate national laws. A case in point is what the former vice-mayor mentioned about the vaccine distribution during the pandemic in South Lebanon. In a South Lebanese Sunni village, not far from our village, locals got 1000 doses of vaccine without any registration. (former vice-mayor, June 2021, Skype call)

This happened because a Sunni political leader had helped them. Concurrently, Christian informants I spoke to also pointed out that even

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Amal and Hezbollah as well as the Druze leadership helped their own communities with the vaccinations, bypassing state incapability and delays. Some Christian political elites interceded on behalf of their constituents to insure hospital beds for Covid-19 treatment, in addition to brokering access to the vaccine. Such a context was shared by other South Lebanese informants I have contacted from June to September 2021 on Skype. Nevertheless, this is often linked with larger phenomena and dynamics, starting with the issue of power-cuts seen now as an endemic problem. But these problems are compounded by the lack of medical supplies, rising poverty levels, the ailing infrastructure of the water utility, the mediocre internet connection and the rising costs of education as a result of currency fluctuations. Finally, this overlaps with the widespread belief that reserves kept in the country’s Central Bank are now at a critical level (Chulov, 2021a; Helou, 2021, 2022). However, to properly frame the issue of the contemporary political management of public health, it is important to contextualize the events. As a colleague working in a Beirut university has recently suggested, in Lebanon, the issue is related to three dimensions: (1) ability of the Lebanese Government to govern; (2) geopolitical interests and changes in the region (e.g., Syria before and after the war); (3) communal reactions (e.g., Sunni-Shia divide; changes in the exogenous finance support). Also, from the 17 October 2019 Revolution, it became clear to many that the Lebanese sectarian groups will be permanent social formations that are almost impossible to ignore. Since then, indeed, political elites started playing an even more critical role and the state (already seen by some Lebanese faction as alien) not as an independent actor. Concurrently, an increasing disaffection towards the elite grew. Indeed, Israeli disproportional retaliation during the 2006 war could not stop Hezbollah which was capable of responding to Israeli attacks up to the end of the war. Even more, no data had then yet emerged on the Sunni Prime Minister Rafiq Hariri’s assassination (14 February 2005). So, the support for Hezbollah was strong from many communities. After the war people from the South were hosted everywhere in the country and everybody provisioned assistance when they were forced to leave the South. This brought huge support from many exogenous actors (including the Arab League). However, following Hariri’s assassination’s findings and allegations against Hezbollah’s potential involvement in the killings, matters changed

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dramatically. Firstly, Hezbollah rejected the findings. Secondly, they withdrew from the government. Thirdly, as a spill-over effect, frictions entered the regional arena (involving Qatar, Saudi Arabia, Iran). The subsequent Doha agreement (22 May 2008) cooled down the tension. The 2009 Lebanese Parliamentary elections happened to be the most expensive elections that had occurred in Lebanon. Assistance and money were channelled to Lebanon, mostly from Saudi Arabia and Iran. This strengthened the already well-structured creation of private Hezbollah institutions, such as hospitals and clinics all around the country (Mollica, 2014b). On a regional level, it was the 2010 Arab Spring that tremendously changed the scenario. Apart from Tunisia, Egypt’s change of regime and the Syrian War deeply affected the regional power balances, directly involving the two world powers (Russia and the USA in Syria; Russia in Libya). At the beginning, money was allocated in Lebanon. Hezbollah participated directly in the Syrian Conflict (Panchetti & Mollica, 2019) and attention went again to Lebanon. The Lebanese Central Bank was capable of managing things. However, since 2011, Lebanon’s balance of payments became consistently negative (Helou, 2021, 2022). The direct involvement of Hezbollah in the Syrian War reduced the entry of money into Lebanon. Iran did not invest in Lebanon much as before, but started investing directly in Syria. The Arab countries considered Lebanon as not a policy priority. Still, according to the former US Ambassador Jeffrey Feldman, the USA spent some $500 million in trying to delegitimize Hezbollah in Lebanon but such attempts failed (Rida, 2010). Since 2015, the economic situation worsened. In summer 2019, the exchange rate was already fluctuating. The 17 October 2019 Revolution followed the crisis, but the national budget was by then already running out. The financial crisis forced the government to raise taxes, above all on internet (including applications such as WhatsApp). Thus, people were outraged at the series of indirect taxes that were draining their already diminishing disposable incomes. For the first time, people organized themselves in a bottom-up and non-sectarian manner. A rise in socio-­ economic demands ensued, while the government was losing its ability because of corruption. What followed was the exchange rate crisis (Helou, 2021, 2022). At its peak, Covid-19 pandemic arrived. By March 2020 the Lebanese government declared bankrupt; they could not pay their debts. The Lebanese could not get dollars from cash machines but only Lebanese Liras. Since then the crisis worsened. At the

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time of writing, the Lebanese Lira has lost 98% of its value. Before the crisis, the Lebanese Lira traded for 1507 Liras to U.S. $1. Now, 22,000 Lebanese Liras trade for U.S. $1. All of this became highly significant for the health sector. The pandemic hit Lebanon in a very fast way; from the first Covid-19 case detected to the first lockdown it took actually two weeks. My University (Messina, Italy) was then organizing a conference on inter-religious dialogue and had invited as a key speaker Mons Hanna Alwan, curial bishop of the Maronite Patriarchate. We had sent all invitations and spread the news on the media, but we had to cancel the event as first Italy and then Lebanon closed their borders. Still, in Lebanon, at the start of the pandemic things were somehow controlled. The health sector seemed to respond well. Nevertheless, rich people were told to have already sent their money outside Lebanon. However, hospitals were capable of getting medicines and the Central Bank capable of transferring money for medications. But hospitals were already calling for the state to help paying debts. Normally, in Lebanon, hospitals admit people belonging to the following categories: (1) patients belonging to the National Social Security Fund (NSSF); (2) patients on the account of the Minister of Health (following a criterion based upon the degree of the illness); (3) patients with private health insurance. Once the situation got worse, private hospitals stopped admitting patients belonging to the first two categories. Looking, for instance, at the way policies are being made by using the Lebanese Voluntary Health Insurance policy as a case study, findings have for instance showed that the voluntary health insurance policy was a political decision taken by the government to tackle an urgent political problem. Factors influencing policymaking were indeed dictated by political interests, sectarianism and urgency (El-Jardali et al., 2014). Nevertheless, from gasoline to clothing and hospitalization, everything was impacted by the plunging Lebanese Lira rate to the US Dollar. This is because 90% of Lebanese consumption was based on import and Lebanon cannot use the Lebanese Lira anymore; concurrently the Central Bank started spending money on essential items such as gasoline and medicines. However, as it had happened in other countries, Lebanon saw in 2020 all prices rising again following tourist arrivals. On Christmas 2020, political authorities decided to relieve Covid-19 restrictions, partly because several economic sectors required some cash inflows insured via holiday tourism. Then suddenly what followed were some 5000 cases per day and some 60–110 casualties per day. Then another extensive lockdown was

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imposed before improving conditions re-permitted an opening of all economic sectors. However, on 4 August 2020, another dramatic event had taken place: the Beirut port explosion. It was a devastating event quantified as the largest non-nuclear explosion in world history. It was caused by hundreds of tonnes of ammonium nitrate stored in the hangars of the dock some six years earlier, a situation well known before the explosion to many locals as recently proved by an inquiry run by Martin Chulov (2021b). The explosion was for a while followed by a new wave of international support: Ngo and the Lebanese diaspora started again raising money (through philanthropism, or donating to local charities etc.), after the stop that followed the 2019 Revolution. In the port, the most destroyed areas were Maronites, Orthodox, Armenian and Catholics, but casualties were also Kurdish, Syrian migrants and Shia from the South who lived in the banlieue of Qarantina and in the Armenian area of Bourj Hammoud. As an informant, a colleague from a Lebanese university, pointed out: Despite the damaged area was mainly materially Christian, dead were from all communities; and this impacted everyone. A lot of money flew into the country again and different political parties tried to get money; the diaspora got involved again. (informant JH)

Everyone felt impacted, because casualties affected all sects. The position of some political parties (above all, the Shia Party Hezbollah and the Christian Party Future Movement) seemed however ambiguous about the explosion. As the same informant pointed out, it was also the same fragmentation of the system that had to be blamed for the explosion, because nobody knows who allowed the chemicals to be stored there; there are no memos about that while three different ministers, belonging to different political parties, held their positions since the chemicals were stored there.

Thus, for a while, international attention went again to Lebanon; mobilization resumed through Norwegian, Danish, Catholic Relief, the Red Cross, the churches, the secular and the non-seculars. In addition, local people and above all students helped in the relief efforts. The civil society came up, the emotional support intensified. But it did not last long and after a few months the country went back to what some informants called a “state of chaos”. Meanwhile, at the time of writing, most of the physical

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damage has been repaired; however its impact has intensified by the anger of a people, above all because no one seems to be competent to sit in judgement of the other (Chulov, 2021b). The chaos increased the fragmentation. Communities polarized again opening the door to the old sectarian narrative to which the ambiguous attitudes of the political elites added. The ambiguities dig upon what an informant termed the “sectarian mind”: I have a friend, very well educated, an architect. Once he asked me, ‘how come that Covid 19 is only affecting Christians? Only infecting Christian areas?’ ‘Well—I said—if you live in the Beqaa then there are not many reports; probably they have no money for a Covid-19 test; probably they have no money to pay hospitals; or it is simply a rural area and there are no hospitals. (informant JH)

Such a “sectarian mind”, to use informant’s words, links up with a long-lasting suspicion which is evidenced in other cases. One of them regards forest fires. In the last months there have been several fires, and some Christian politicians have publicly, rhetorically asked, “[W]hy are the fires happening just in Christian areas?” On a different level, at one point during the pandemic, the Maronite Patriarch asked his priests in Lebanon to stop praying in churches. As a consequence, some Christians replied that Muslims were still praying in their mosques and that was going to allow them to take over the country. But the reality was different. The Secretary General of Hezbollah, Hassan Nasrallah, had in fact explicitly said that he wanted his supporters to consider the fight against Covid-19 as a Jihad, as a Holy War. He then asked people to avoid public gatherings and above all funerals (usually very large in the Shia tradition) as well as restaurants and weddings. But the relation between religious practices and the management of health during the pandemic was also an infra-denominational problem. In the Maronite Church, for instance, the big challenge was the one of the Holy Communion. The Pope had said to receive the Eucharist in the hand, and then have it in immediately in the mouth in front of the priest. However, some right-wing factions of the Maronite Church (e.g., the Monks of the Blessed Virgin Mary) said that it was a violation of the religious law and they should give the Eucharist in the mouth of their congregations. These practices will protect them from Covid-19. Also, an Orthodox priest in the northern Akkar region, during the lockdown,

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hosted Good Friday commemoration in his Church. Hundreds gathered there and in the homely he said that since them attended the commemoration Covid-19 could not touch them.

Epilogue One of the most interesting scenes of the film Under the Bombs (2007), shot in the wake of Idf bombardment of South Lebanon, is that of a taxi-­ driver approaching an NGO ship in the southern Lebanese port of Sidon. The ship is landing medicine and the man tries to convince one of the co-­ operators to give him some medicines claiming that they were for a relative of him who was seriously ill. Indeed, he was lying and we can just guess what he would have done if the co-operant would have given him the medicine. But this scene came to my mind when in early 2022 an informant told me that the government has no money left, not even to buy masks to distribute to employers belonging to vital national categories. In my last Skype interview with the former vice-mayor of the Christian village on the Israeli border, he raised the issue of vaccines distributed according to sectarian lines. Indeed, once vaccines started being available, Lebanese politicians moved towards first getting and then distributing them in their constituencies. Soon Sinovac (from China) vaccine entered the country, allegedly via Hezbollah; meanwhile Sputnik (from Russia) entered the Beqaa where a local politician brought it for his constituency. On top of that, China offered 150,000 doses of Sinovac to the Lebanese Army, and the Army accepted. The idea of donors was however magnified through a consortium of universities (San George, Saint Joseph, American University of Beirut and the Lebanese American University [Lau]). One of them, Lau, received a donation of a million dollars from Bahaa Hariri, brother of the former Prime Minister Saad Hariri. This university consortium decided to vaccinate its employees while also vaccinating the public at large (Batakji, 2021). Public health management threatened the already fragile consociational Lebanese construction. Narratives and ambiguities widened then the gap between religious groups and between them and the central government. Fitting with a long-lasting tradition of sectarianism, Covid-19 pandemic enhanced the tension which has traditionally been more manifest at times of crisis, when the country should, on the contrary, act in a united way. But the country was incapable of doing so precisely because of its communal fragmentation. Meanwhile inequalities, linked to religious factionalism, influenced access to health care.

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References Arnold, J. (2023). The Poverty of Opportunity: Where Are We Going; Where Have We Been. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 8. Palgrave Macmillan. Batakji, R. (2021). In support of the national Covid-19 vaccination campaign. Lebanese American University Webpage; https://news.lau.edu.lb/2021/in-­ support-­of-­the-­national-­covid-­19-­vaccination-­campaign.php. Cammet, M. (2014). Compassionate Communalism: Welfare and Sectarianism in Lebanon. Cornell University Press. Channa, M. S. (2023). Negotiating Power over Human Bodies: Populism, People and the Politics of Health in Delhi. In I.  Pardo & G.  B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 7. Palgrave Macmillan. Chulov, M. (2021a). This Is the End of Times Lebanon Struggles to Find Political Path Through Its Crisis. The Guardian, 28 June; https://www.theguardian. com/world/2021/jun/28/this-­is-­the-­end-­of-­times-­lebanon-­struggles-­to-­ find-­political-­path-­through-­its-­crisis Chulov, M. (2021b). Lebanese capital remains a shell of a city as efforts to find who is to blame for tragedy have made little progress. The Guardian, 4 August; https://www.theguardian.com/world/2021/aug/04/a-­y ear-­o n-­f rom-­ beruit-­explosion-­scars-­and-­questions-­remain El-Jardali, F., Bou-Karroum, L., Ataya, N., Addam El-Ghali, H., & Hammoud, R. (2014). A Retrospective Health Policy Analysis of the Development and Implementation of the Voluntary Health Insurance System in Lebanon: Learning from Failure. Social Science & Medicine, 123, 45–54. Helou, J.  P. (2020). Activism, Change and Sectarianism in the Free Patriotic Movement in Lebanon. Palgrave Macmillan. Helou, J. P. (2021). Lebanon's Political Economy of Informality: Elites, Citizens and the State Shape Money(s) during the Sovereign Debt Crisis. In I. Salamey (Ed.), The Communitarian Nation-state Paradox in Lebanon. Nova Science Publishers. Helou, J. P. (2022). State Collusion or Erosion During a Sovereign Debt Crisis: Market Dynamics Spawn Informal Practices in Lebanon. In A.  Polese (Ed.), Informality, Labour Mobility and Precariousness: Supplementing the State for the Invisible and the Vulnerable. Palgrave Macmillan. Kerr, M. (2005). Imposing Power-Sharing: Conflict And Coexistence in Northern Ireland And Lebanon. Irish Academy Press. Mollica, M. (2008). Ethnography under Fire: Alma el-Shaab Summer 2006. In R. Hudson & H. J. Heintze (Eds.), Different Approaches to Peace and Conflict Research. University of Deusto Press.

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Mollica, M. (2009). Erosion of Legitimacy: A Lebanese Case of Collapsed Governance. In I. Pardo & G. Prato (Eds.), Citizenship and the Legitimacy of Governance in the Mediterranean Region: A Comparative Anthropology. Routledge. Mollica, M. (2014a). When the Ethnographer Encounters War. In A. Boscoboinik & H. Horakova (Eds.), Anthropology of Fear. LIT Verlag. Mollica, M. (2014b). A Post-War Paradox of Informality in South Lebanon: Rebuilding Houses or Destroying Legitimacy. Studies of Transition States and Societies, 6(1), 34–49. Mollica, M. (2019). Conflicting Loyalties and Legitimate Illegality in Urban South Lebanon. In I.  Pardo & G.  Prato (Eds.), Legitimacy: Ethnographic and Theoretical Insights. Palgrave Macmillan. Mollica, M., & Dingley, J. (2015). Sectarian Dynamics of Multi-Cultural Norms and the Law in Lebanon: A Warning for the Future of Northern Ireland. National Identities, 17(4), 405–431. Panchetti, B., & Mollica, M. (2019). Governance formale e informale nel Libano di Hezbollah: le nuove sfide del conflitto siriano. Humanities, 8(2), 55–84. Pardo, I. (2000). When Power Lacks Legitimacy: Relations of Politics and Law to Society. In I.  Pardo (Ed.), Morals of Legitimacy: Between Agency and System. Berghahn. Pardo, I., & Prato, G. (2019). Ethnographies of Legitimacy: Methodological and Theoretical Insights. In I. Pardo & G. Prato (Eds.), Legitimacy: Ethnography and Theoretical Insights. Palgrave Macmillan. Pardo, I. (2023). Misgovernance Kills: Italian Evidence. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 3. Palgrave Macmillan. Rida, N. (2010). Feltman Green "Op. Disfigure Hezbollah"... Typical Flop. Al-Ahed News: https://english.alahednews.com.lb/11470/385

CHAPTER 14

Interrogating the Public Health Approach: Lessons from the Field of Urban Violence Gary Armstrong and James Rosbrook-Thompson

Introduction Governmental responses to the COVID-19 pandemic have brought public health discourse to the fore in societies around the world. The public health idiom had already made serious inroads into understandings of, and attempts to address, urban violence (particularly among young men). With COVID-19 almost inevitably becoming “endemic”, the role of public health discourse will only become further entrenched and extend to the analysis of a wider range of societal “ills” (not all of which are directly connected with COVID-19 and other Corona viruses). This chapter seeks to analyse the application of the public health approach to attempts to address urban violence using fieldwork conducted in London. As explained more fully below, the fieldwork was carried out in a number of settings across the English capital, between 2011 and 2018. We are especially interested in interrogating the public health model on its own terms. For

G. Armstrong (*) • J. Rosbrook-Thompson City, University of London, London, UK e-mail: [email protected]; [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 I. Pardo, G. Prato (eds.), The Legitimacy of Healthcare and Public Health, Palgrave Studies in Urban Anthropology, https://doi.org/10.1007/978-3-031-25592-2_14

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example: What is the disease? How are symptoms identified and gauged? Who are the victims? How is the “cure” formulated and administered? And how is recovery from the social ill of urban violence captured and calibrated? More prosaically, while we know about some of the theoretical-­ conceptual implications of viewing urban violence through a public health frame (Riemann, 2019), we know less about how these implications play out in the everyday settings wherein agencies are expected to work together to combat urban violence. In exploring these issues, we will combine the findings of our own fieldwork with the growing literature on the application of public health approaches to urban violence, as well as scholarly debate around trust and authority in the context of legitimacy (Pardo & Prato, 2019a, 2019b). This will allow us to examine the institutional and personal tensions that exist in the context of public health-inspired, multi-agency work on addressing urban violence, as well as wider political and ideological assemblages. We also pause to make comparisons with other approaches to violence, including some alternative methods of addressing urban violence, and question whether Agamben’s assertion about the imposition of a “continuous state of emergency”, as discussed recently by Prato (2020, 2023), is relevant in the case of urban violence and public health. Here links can be drawn with Marcello Mollica’s analysis (2023) of war and public health in Lebanon. Whereas in the latter context questions about public health are posed in the context of full-scale civil war, in the UK violent disputes among youth groups have been used to create something approximating to a state of emergency wherein public health interventions (which implicitly endorse the prevailing neoliberal logic of the UK government) can be easily justified. We begin the chapter by briefly reviewing the two areas of the literature mentioned above. We proceed to describe the nature of the fieldwork and the settings it was conducted in. The analysis sections of the chapter are organised according to the procedural hallmarks of the public health approach—from diagnosis to treatment and claims about recovery.

Legitimacy and the Public Health Approach The public health approach originates in the US and attempts to curb levels of gun crime in cities like Chicago. As the name implies—and this is perhaps fitting given the propensity for spikes in urban violence to be labelled “epidemics”—the approach is rooted in an epidemiological

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framing of urban ills though, as we will see, is somewhat selective in its identification of the causes of these ills. As described by Malte Riemann (2019), an epidemiological framing involves seeing violence as a contagion and thus amenable to the kind of prophylactic methods employed in disease control. This emphasis on prevention marks a move away from enforcement-led strategies whose principal levers are punishment and deterrence. It was the initiative documented by Riemann, Cure Violence in Chicago, that inspired the application of the public health approach by Scotland’s Violence Reduction Unit. Indeed, the approach has gone global, with 23 cities across the US and national settings as diverse as South Africa, Argentina, Honduras and of course the UK now implementing public health strategies to combat urban violence. As Riemann outlines in the case of Cure Violence, the implications of seeing urban violence as a disease are important at the level of diagnosis and treatment. He argues that “by replacing political solutions with medical diagnosis and treatment models, violence becomes disentangled from socio-economic inequalities and explained by reference to individual pathology alone”. In other words, given the locus of pathology and therefore intervention is proximate, any discussion of the structural causes of urban violence is foreclosed. This is even more problematic when, as in the case of Cure Violence, the identification of victims (in the broad sense) is bound up with racial politics. Compounding these issues are claims made about the natural scientific credentials of the approach. An emphasis on evidence-led intervention and quantitative methods creates what Riemann (following Foucault) calls a “regime of truth” which discredits alternative approaches. For the most part these blandishments are accepted by policymakers and other senior officials as they complement existing managerialist strategies such as evidence-led policing. The pursuit of being predictive in the Criminal Justice System (CJS) is inspired by the non-retributive penal philosophies of prevention and reformation. Any sentence passed on the convicted is implicitly a failure of prediction and thus considered by many as a significant task in creating a predictive assessment of future behaviour. How the suppositions of predicted future behaviour should be delivered and by whom is a crucial consideration for criminology, not least because prediction has to be considered from an individual perspective (is the offence an outcome if individual anomie?) and an institutional perspective (how many prison places might here be?) and indeed from a categorical perspective. In this latter consideration we need to ask whether a number of individuals are

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appearing in the CJS by virtue of a lifestyle wherein practices and stigma precede individual circumstances (Mannheim & Wilkins, 1955). Predictive studies were explored close to a century ago by Burgess (1928) who examined 3000 parole records of imprisoned male offenders in Illinois State penitentiary and, in considering 21 factors, attempted to establish a points system of predictability. There was no follow-up research or weighting system and the only resource the researcher had to draw on was the official parole documents. Around the same time the Guess Who? Game pioneered by Hartshorne and May (1928) took 4520 school children aged between 8 and 13 and, using vaguely derogatory statements, asked them who in their class fitted such epithets—a technique supplemented by IQ testing. Later, Glueck and Glueck sought information about offenders beyond that compiled by CJS officials, reducing the factors to 6 and extending the prediction timeline to 15 years (beginning from the age of six), as they compared 500 delinquents with non-­ delinquents based on subjective ratings. The study’s sample was not random; all offenders were drawn from a reformed school and had long criminal histories. Crucial to the metric were considerations of family, traits derived from the Rorschach Test and characteristics deduced via psychiatric interviews. Mannheim and Wilkins (1955) took an approach similar to the Gluecks but, utilising a more sophisticated statistical technique, attempted to deal with those considered “un-predictables” (those on the borderline of probable success and probable failure). Any attempt at predictive profiling thus has issues. At one level, it is about the idiographic and actuarial nature of the proposed intervention; is early intervention worthwhile? Is all behaviour treatable? Then arises the issue of validation; namely, what intervention is proven? In 1951 Cambridge University academics conducted the Somerville Experiment which, via an elaborate interview procedure, ranked male juvenile offenders on an 11-point scale. This was more successful than the merely impressionistic assessment of their schoolteachers in predicting future offending. In 1952  in the Journal of CLCPS Hathaway and McKinley (1942) attempted to utilise the Minnesota Multiphasic Personality Inventory (MMPI) for predicting delinquency but with little success. Around the same time, the California Youth Authority pioneered the Jesness Inventory which sampled 145 delinquent and 300 non-delinquent on a 155-point scale which sought a true/false response around the themes of social maladjustment, alienation, anxiety repression and withdrawal to produce an “asocial index” to identify 74% of delinquent behaviours.

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Scales have interested those seeking predictions. One such was the 1963 Bristol Social Adjustment Guide which via its researcher D.H. Stott at Glasgow University measured a child’s social adjustment and developed a delinquency-prediction scale and claimed a high correlation over the 15-month duration of the research. The Milligan scale was a long-term follow-up study of 5000 children begun in 1958. This provided some predictive value as it correlated incidents of childhood aggression with later delinquency. The Rutter scale is still being utilised and Havinghurst et  al.’s (1964) longitudinal study of 5000 11-year-olds provided socio-­ metric testing for “maladjustment”, “aggression” and “withdrawal”. Interestingly, very few of the research cohort turned out to be delinquent. Kvaraceus’ (1953) checklist itemised 75 items of personality which included home background and schooling but was never really used as a predictive device. The California Psychological Inventory (CPI) produced by Gough (1956) contained a “socialisation scale” which sought to measure “degrees of social maturity” and probity that an individual could be argued to have attained and was utilised later by Dinitz et al. (1962) to study youth offenders in High Delinquency Areas (HDAs). The latter author then developed the Self Concept scale, asking how much the subject saw oneself as an influencer (the respondents were chosen by schoolteachers). We might also consider Rosenberg’s (1965) exploration of adolescence which used self-concept variables to develop a series of scales around adolescence. Crucial to daily policing, the issues around intelligence are three-fold: how is it gathered, who collates the sources of information and how is such information then utilised? Also critical are the systems of storage, co-­ ordination and dissemination, alongside intelligence-sharing protocols. We might add a few further considerations when addressing intelligence, namely: What reaction timelines are ideal for information received? Who completes the profile of the individual offender? From whom is the information drawn and how reliable is it? To whom is the information communicated and for what purpose? In seeking to analyse these issues through the lens of legitimacy, there are a number of important conceptual innovations to take account of. These innovations (Pardo, 2000a, 2000b; Pardo & Prato, 2018) have moved debate around legitimacy beyond the basic Weberian assertion (1978 [1922]) that the authority to rule depends on recognition of rulers’ legitimacy. As noted by Pardo and Prato (2018, p.  2), such work has“examined in depth the socio-economic impact on urban life of

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policies, rules and regulations that are received in the broader society as unfair, slanted or punitive. […] They have asked: How much more governance failure before legitimacy is withdrawn and, consequently, democracy is jeopardised? The need to address this question is now more urgent than ever; particularly in democratic systems across the world, for there governance and the law are broadly seen to fail the democratic contract as they fail to meet the challenge posed by the implications of this phenomenon.” As Pardo (1995) observes, in answering these questions we must distinguish between legitimacy as a philosophical concept—that is, the principle of authority resting on consent rather than coercion—and a sociological analysis of legitimacy’s various sources which include ideological commitments and everyday perceptions—or what Pardo, following Elias (1982 [1939]), calls apperceptions. For Pardo and Prato (2018, p.  4), “[T]he legitimacy of the political (and social) order is in constant transformation. Similarly, and most importantly, apperceptions of legitimacy are not static, but are subject to constant change, too, due to changes in the values, norms and needs within a specific socioeconomic and cultural context at a specific historical juncture.” Rosbrook-Thompson (2019) has attempted to look at the public health approach to addressing urban violence through the lens of legitimacy, using interviews with practitioners who work in multi-agency settings. While none of the respondents refused to accept that the public health approach to urban violence could be effective, many were cynical about how and why there has been a wholesale “buy in” to the approach from politicians and policymakers. Their reasoning on this score illustrated Pardo’s (Pardo, 2000a, 2000b; Pardo & Pardo, 2018) point regarding legitimacy and the socio-political backcloth to people’s apperceptions: the specific historical juncture within which people found themselves tempered and shaped their apperceptions of legitimacy when it came to the public health approach. Respondents’ opinions on why the approach had been endorsed by politicians and policymakers were also telling. For some respondents, it was the approach’s conservative stance with regard to inequality and resistance to radical change that lay behind its endorsement, particularly at national level. Another reason cited by respondents was the approach’s compatibility with existing institutional arrangements. Put simply, it could be delivered in an austere financial climate where people and resources

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were scarce. Others were even more cynical, seeing in the approach a sinister tendency to identify “race” as a shorthand for criminality. That is, some respondents’ claims were consistent with one of the points made by Riemann (2019) regarding possible racial coding in the public health approach. As Reimann argues of Chicago’s “Cure Violence” initiative, “By drawing the line between the ‘normal’ and the ‘pathological’ according to markers of ‘race’, negative stereotypes are reinforced and marginalized individuals living within zones ‘contaminated’ by violence are stigmatized”. Indeed, in its reluctance to reckon with structural issues such as poverty and inequality—what Wacquant (1996) has called advanced marginality—and making urban violence an issue of individual pathology, the public health approach risks identifying such violence with the “Otherness” of these individuals. In what follows we seek to take a more concerted look at just how legitimate the basic premises and principles of the public health approach are perceived to be by those working to prevent and combat urban violence “on the ground”. But before doing so we should provide a brief account of the fieldwork involved in our investigation, which includes the places and institutional settings where it was conducted.

Settings and Methods The fieldwork was conducted between 2009 and 2018 across a number of “superdiverse” London boroughs (Rosbrook-Thompson & Armstrong, 2022; Rosbrook-Thompson, 2018). The lion share of the fieldwork took place in the London Borough of Newham (LBN) between 2011 and 2012, and was part of a wider project which sought to examine the policing of the London  2012 Olympic Games (Armstrong et  al., 2016). As acknowledged later in the chapter, a large part of the policing and security planning around the 2012 Olympic Games pertained to the issue of gangs and Serious Youth Violence (SYV) in East London (and especially LBN). Whereas the threat of a large-scale terrorist attack was certainly among the concerns of the upper echelons of the Metropolitan Police Service (MPS), at the level of everyday policing it was skirmishes over the territory of street gangs and the extension of this territory into freshly minted Olympic and commercial spaces that dominated. Policing and security preparations for the Games coincided with the introduction of gang databases in London. These databases were pioneered in the US and aimed to identify an area’s key gang members as well as rate them algorithmically in terms

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of their violent potential (Fraser et  al., 2019). The database used in London is called the Gangs Matrix and has been at the centre of serious controversy over racial disproportionality plus possible contravention of human rights and data protection legislation (Amnesty International, 2018). Early use of the Gangs Matrix in LBN went with the grain of public health approach with regard to risk, harm and contagion. But there were problems. As we will show, the wider approach to addressing youth violence was poorly articulated, with the Gangs Matrix integrated into existing policing and security strategies rather than representing anything substantively new. Later fieldwork was conducted across a further three London boroughs (Armstrong & Rosbrook-Thompson 2016, 2017). In the chapter we use the findings of interviews with practitioners in each of these locations. The practitioners were principally drawn from multi-agency teams which included police, Youth Offending Services, plus representatives from education, probation and various third-sector workers. By 2017 (when this bout of fieldwork began), the public health approach was being articulated more fully and implemented more comprehensively. While the Gangs Matrix remained at the centre of data-driven operations and interventions, these were formulated and effected in the context of a multi-agency team and principally geared to prevention and safeguarding (with enforcement a last resort). That said, while there were differences in approach across the two bouts of fieldwork, a common factor across all settings was an austere financial climate wherein resources were sparse. Issues of funding, staffing and wider questions around capacity evidently affected practitioners’ ability to implement the public health approach as well as their views on its advantages and disadvantages. The fieldwork itself comprised observation of police and multi-agency meetings and operations plus interviews with a range of police, local authority and third-sector practitioners. In what follows we use a combination of fieldnotes and interview excerpts to interrogate each element of the public health model—from diagnosis to treatment and claims about recovery—with the analysis section of the chapter organised accordingly.

Diagnosing Urban Violence Central to the public health approach (and consistent with its underlying epidemiological model) is the identification of the symptoms of urban violence. Beyond basic statistics on the number of incidents involving

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SYV, the approach seeks to construct a picture of who are the “top” gang members—or “nominals”—in a given district (and/or City). Intelligence gleaned from various sources is used to score each nominal for “risk” and “harm”—essentially an attempt to gauge the likelihood of each young person carrying out a violent attack and being the victim of a violent attack, respectively. The scores are the key indicators which feature on the Gangs Matrix. In 2012, however, it was clear that there were disagreements about what constituted intelligence, and whether the Gangs Matrix should be placed at the centre of the police’s attempts to address SYV. As a Detective Sergeant (and member of LBN’s Gangs Unit) commented at the time: We feed what we’ve picked up to the Centre—so we heard here in Stratford and Maryland that some of the robbers and little gangsters were saying they were looking forward to the Olympics because of the opportunities that would come their way to rob people of their iPhones. We send this uptown but they reply that this is “soft intel” and they want their intel to be based on the Matrix so we’re all sat in the office for weeks sending them stuff about people, half of which we’re not interested in and some of whom we didn’t know mattered anymore.

Furthermore, in the eyes of some detectives the prescriptive nature of the inputs to the Matrix meant that the “big figures” were not on the system. One Detective Chief Inspector explained his frustrations with the counting system bound up with the Matrix. It seeks a history of criminality to produce an index of dangerousness. But it doesn’t correspond with our “local” version based on our extensive local knowledge. People are on it for Newham who we don’t even recognise—or recognise as not as dangerous as the Centre tells us. It avoids the big-time players […] they don’t get “injured in fights” they don’t “get caught with stolen goods”. We’ve got the whole of the Gang Unit inputting this material instead of being out there nicking gangsters and we’re running out of money. … Another thing is the Centre wants 80 names for the gangs and we’ve been told we’ve got to find that number and so we put anyone—well not anyone—in it to hit the target. So basically anyone walking the streets […] every young kid in Newham faces the prospect of being classified as a “gangster” just because they are seen with others who fit that category. […] We’ve done this before around football hooligans and we have the category of “Risk Supporter” which is all about databases. In 2009 when West Ham

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and Millwall kicked off in Green Lane and in the ground there were 115 arrested and just five were on the data base as “Risk Supporters”. A few weeks ago at the same fixture there were 300 of that category in the West Ham ground who all got in on forged tickets. …When the Commissioner visited a few weeks ago to launch his Gang initiative I spent 30 mins with him explaining these points. […] What did he say? “Thank you.” Did it change anything? No! That’s a reflection of the organisation we work in.

As a report by Amnesty International, Trapped in the Matrix (2018), demonstrated, efforts to hit targets by identifying a fixed quota of gang nominals and adding their details to the Matrix were fraught with errors and inconsistencies, while having an adverse impact on the young people identified as gang nominals (and their families). Questioned days later on the same issue, the Head of the Gangs Unit had a similar but slightly different take: AG (a supposed gang nominal) is the biggest target for us at the moment. He’s our “most dangerous”. He’s 26 years old black-skinned with green-­ eyes and goes by the nickname “The Lizard”. He deals with all the gangs on Newham and cuts across all boundaries. He supplies drugs for street dealing to all of them and sells guns when they are needed. But he doesn’t live on Newham and in fact moves all the time—and he wouldn’t be on the Matrix. He’s got no ASBO  (Anti-Social Behaviour Order) past and doesn’t get stopped and searched and has never been a victim of crime. … Yet we have him as our number one but he doesn’t fit this category according to the Matrix criteria. […] I’m told we can “scoop” the system by telling it we have “hard intel” and insist he goes into the top 10 of our borough.

Here we see how the categories used in diagnosing the problem can run up against the everyday experiences of officers tasked with combatting SYV. This prompted the Head of the Gangs Unit to question the use of Matrix and wider data-driven approaches, especially after being told that in order to get the resources he needed to pursue the most dangerous young person in the borough he would have to reframe any intelligence (erroneously) in terms of this young person’s gang membership. In effect, the legitimacy of his own analysis was being questioned by the centre of the MPS which in turn led him to question how legitimate the burgeoning public health approach really was. For practitioners involved in later attempts to combat SYV (as part of another multi-agency team in a different London borough), the issue was

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about the focus of the diagnosis. Speaking in 2018, a detached youth worker remarked: It’s all the rage, isn’t it? There was this miracle in Scotland and now it’s going to be copied down here. But things are different here. And, if I understand this thing correctly, we’re not even getting down to the root causes of the issues here. Look, how far is the gap between rich and poor in this borough. It’s crazy, probably, like, one of the worst in this country. And that’s generational, mate. It’s bedded in. There ain’t much chance of the next kid doing better than his parents. He may even need to be on road to support himself and his parents. And, as I say, if my understanding is correct, then the problem is with him, the kid. It’s him that needs to be fixed. Not, like, the system that’s creating the same mentality in every second or third young man on that kid’s estate. You can tell me it works. But what is it really working to achieve? You know what, you could get real deep and say, a few less kids getting violent but the system remains pretty much the same. There’s always more going on than meets the eye, my friend.

As an experienced youth worker and former gang member—someone who possessed “cultural competence”—this respondent’s unhappiness with the public health approach was obvious. He ended on a conspiratorial note, hinting that the legitimacy of the approach rested on its ability to support and reproduce the status quo and, more specifically, the staggering levels of inequality that existed in the inner-London borough in which he worked. Some practitioners working in multi-agency teams in other parts of London took issue with how the “illness” was identified and located, especially in the context of wider concerns about racism and racial disproportionality. As noted by one member of a Youth Offending Team: It’s more of the same, really. You see the racial profiling in the Gang Matrix. This will probably be just the same. By saying, “you’re the problem. We’ll help you fix you”, what are you actually saying about young people? I mean, if the majority of young people targeted are BAME, and you’re saying the problem is with them, then what are you really saying?

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Treating Urban Violence Once the issue had been diagnosed through indices of risk and harm, the job of the police and other members of multi-agency Gangs Teams was to stage evidence-based interventions based variously on the motifs of “disrupt and divert” and “prevention and safeguarding”. For LBN police tasked with clearing the ground for the Olympic Games, the urgency and importance of the task was underlined by the unprecedented resources made available to them by the MPS. The Newham Gangs Unit was supplemented by two surveillance teams who ran operations against targeted individuals. These teams—with one comprising 12 officers—conducted round-the-clock surveillance on nominated individuals. Another team (of a similar size) was also active in the borough—between them they had four vehicles. One eight-strong surveillance team was from the Olympic Command Unit (SO23) and was deployed in Newham since late February 2011, remaining at Newham Police’s disposal until the end of the Games. Asked about the effectiveness of this deployment, a mid-ranking officer stationed in Newham gave a wry and guarded response: Newham estates are full of rat-runs and alleyways […] very difficult to police the gangs and dealers. When the surveillance team all have new cars all of the same make it doesn’t make them that inconspicuous to our gangsters.

There was a feeling that the money spent by the MPS on exceptional Olympic-based policing measures may have been used more effectively in bolstering the number of officers working locally, plus allowing existing personnel to work more flexibly. The demands of the Matrix didn’t help in this regard. The annual budget for the Gangs Unit had been spent by early March 2012. To their credit, members of the unit were working shifts (some of which were very long) and not claiming over-time. This was just as well; there was no over-time available, with the Head of the Unit admitting in mid-March that he was £5000 over budget. Some relief came his way the very week he revealed the over-spend when the unit was awarded funding of £10,000 to go towards over-time from the London Mayor’s Office. Just three boroughs—Newham, Westminster and Waltham Forest— received such funding. The award was timely. In that same week Newham was revealed to have the highest incidence of knife-crime (over the previous two weeks) in the MPS, with four incidents scuppering the progress

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the borough had made in combating gun crime (down 23% on the previous year). As noted above, the upper echelons of the MPS believed that the solution to all of this was the Gangs Matrix. Whilst the instigator of this system was believed to be a one-time Commissioner of the MPS, the idea seems to have been first applied in the London Borough of Hackney. Many officers who were part of an operation designed to address problems related to drugs and firearms (codenamed “Connect”) were subsequently deployed to the newly created Gangs Command. It was under the auspices of Gangs Command that all London boroughs introduced the same system for recording and classifying gang activity (with the pursuit of this minimum standard known as the Gangs Matrix). Each borough was instructed to send in details for at least fifty individuals who met its criteria. Members of Newham’s Gangs Unit agreed that they could fill that number twice over (notwithstanding problems around definition and identification)—and might just do that. The problem, however, was finding the time to input the data. The Matrix’s overarching scores for risk and harm are underpinned by thirty criteria. This made inputting data tedious to say the least. Each individual fed into the Matrix had to be accompanied by details such as last stop and search as well as details on Anti-Social Behaviour Orders (ASBOs) and so on. This demand required half a day for each individual and frustrated high-ranking police officers who had to pull personnel off operations to meet the time demands of central Gangs Command who wanted to compile an MPS-wide Matrix of gang members by mid-March 2012. There was also concern that the comprehensive and resource-intensive work of Gangs Command had unduly superseded more local operational needs—needs which would have benefited from greater resources and technological sophistication. Amid all the talk of databases and evidence-based intervention, a Chief Inspector lamented his inability to keep track of how many officers were on duty at any one time, and where in the borough they were located: Do you know how many cops are working Newham today? Neither do I and I’m going to be in charge for some of the time in the Olympic weeks. We don’t have a system that tells us who’s on or off or what times they are on or if they are on what duties they might be doing or if they’ve come on and been taken away on AID.  It’s unbelievable, isn’t it? Alright the personal radios work on a GPS system—that gives an indication and some of the cars

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have tracking, but not all of them and not the surveillance vehicles. I’m trying to implement a system whereby we know every day who’s on and where they are. Then if we have an issue or can anticipate an issue we can deploy to deal. This is what any modern workplace organisation would have … unfortunately we don’t have the technology for such information so the scheme will work on a map containing drawing pins and with felt tip markings.

He also voiced concerns over redeployment of personnel during the Games. We’ll lose police officers by the dozen on the borough to the Centre. … The Home Secretary has said that vans full of officers can ride around London all day because nothing that hits the category of “public order” is to happen in London between now and the start of the Games. The boroughs are denuded of cops to keep things calm in town (central London).

For those involved in Newham, then, while the Matrix gave an air of sophistication and systematicity to the emerging public health approach, their attempt to “treat” the ills of urban violence was adversely impacted by older problems: a tension between centre and periphery, issues with funding and the uneven application of technological fixes. For others it was institutional tensions between team members that shaped the treatment of urban violence. These centred on competing priorities and clashes between the underlying ethos of particular services. As one practitioner puts it: We’re all here because we want to stop young people harming each other. We’re all agreed on that. And I’d say we all buy into parts of this new medical approach. But after that, there’s loads of room for disagreement. Do I think that this bit of intel offered up by education or probation or whoever is fair and accurate—from what I know about that young person? Then, do I agree that the intel should be shared and acted on in a certain way? You know, in a way which could hurt that young person’s chances? That’s in the context of, well, what are my priorities? Mine may be purely about safeguarding. And though we’re all here loosely because of that, protecting health, etc., the police have their own priorities. And why wouldn’t they? There are other parts of their job, a lot of which will be about enforcement—you know, arresting people. Whereas my job may be all about safeguarding and prevention … And it’s hard in that context, I think, to create that wide cultural change that this new medical model obviously needs.

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Another practitioner also identified this tension while expressing some sympathy with the police’s task: Look, right, we want to stick to this safeguarding, promoting health model, with early intervention and all the other stuff. But if it doesn’t work straight away, and young people are still getting hurt and there’s some tragic ­outcomes, really it’s the police getting the blame—at the end of the day. So, it’s like, while I may really disagree with some of their approach, I do see that they may feel a different kind of responsibility.

As we will see, this tension between the priorities of different member agencies was also reflected in the measurement of “recovery”.

Recovery from Urban Violence When it came to the curative qualities of the public health approach, many practitioners turned to the issue of evidence and the imperative of demonstrating the efficacy of the approach—whether or not they agreed with its underlying principles. For those who bought into the public health approach, the fact that it “worked” and perhaps more importantly that its success was measurable was key. For one member of a local community safety partnership, institutional imperatives were as important as more qualitative attempts to solve the problem of urban violence: I mean, we have targets. We care about these children, but we all have line managers and evaluations of our performance, and we have to demonstrate that what we’re doing is effective. And my impression is that this will work in that sense, you know? It’s worked (in) other places and it’s about showing it will work here.

Asked about the extent to which the approach addressed the root causes of SYV, she replied: Well, no. Not really. Look, we can say till we’re blue in the face that there are deeper reasons for this violence. I mean, straight away you’ve got a massive gap between the richest and poorest across most of London. You’ve got racism everywhere. And job opportunities being affected by these things. … But my sense after working with this model for a while is that, the way it’s applied here anyway, it’s not really about those things. It’s shallower than that. But the thing is, that’s still progress in some ways. I mean, do you see

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any political party out here with the desire to tackle these massive problems that have been getting worse for decades?

A youth worker echoed this sentiment: I see some issues with it. But in terms of making my professional life that bit easier, it is appealing, yeah. We have to count and document everything, or someone does it for us, so it gets to the point where we’re not really fussed how it works. If we can show it has the right sort of effect, then happy days. And if that has a connection with what’s happening out there on the street, then it’s a win-win (situation). I’ve been doing this a long, long time, and I’ve seen the changes. It’s become a charade. But it’s a game we’re more or less forced to play if we want to stay in work.

The cynicism of others was directed at the model’s compatibility with wider ideological and political assemblages. They hinted that the generation of results was a performative exercise, with the ultimate aim being the reproduction of neoliberal, austerity-inspired modes of governance. As a local authority official commented: I’m pretty sceptical about all this, and I shouldn’t really say this, but it’s all very convenient isn’t it? They’re asking all of these people and agencies to work together to solve problems, when each of those agencies has been squeezed and squeezed. If you speak to anyone in any of those (agencies) they’ll say, “we need more resources”, but the government can pull a policy off the shelf which conveniently fits with the way things are organised. And they were organised that way because of austerity.

A housing officer in an outer-London borough linked the adoption of the public health approach to the existing allocation of resources: I’ve been doing this for long enough to be cynical. But this focus on safeguarding just happens to come when we’ve got record low numbers of cops to do the actual enforcement. So, it’s over to all of us and the new focus is on “partnership working” and collaboration. … You have to wonder whether it’s not so much, “how best to solve a problem” as “how best can we solve this problem in light of the fact there’s not enough people in each agency do stuff properly”.

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Here, again, the issue of competing institutional priorities came to the fore, with different agencies tending to subscribe to different measures of success. A charity worker described the impact this could have on the day-­ to-­day application of the public health model: For us, we have our own agenda. Yes, we want to see levels of violence go down but the charity has its own, more narrow, mission. So, for us, if we’re getting eight or ten known gang members in a room and they’re making the right sounds about squashing beef with another group—or, you know, even better, we can get both groups in the same room and get them to even consider squashing it—then that’s success. If another group won’t engage and are still beefing, there isn’t much we can do. If I’m with the council or police, they’re probably looking at justifying the money invested in the programme through, you know, reducing number of incidents, murders, etc. The more headline stuff. We see this towards the end of a (annual) cycle where we’re all working together but as individuals we’re putting together evidence of success for our own organisations or agencies. You know, stuff that will make sense in those contexts.

Conclusion In bringing the chapter to a close we will take stock of the lessons learned from this multi-sited ethnography of public health-inspired approaches to address (or “cure”) urban violence. While one may assume that programmes formulated and implemented in the name of public health can be separated from questions of politics and legitimacy, our findings demonstrate that this certainly is not the case. We need only consider varying responses to the COVID-19 pandemic to acknowledge that public health programmes overseen by national governments have been intrinsically (and in some cases, emphatically) political, with the legitimacy of each programme relying on appeals to wider notions of common sense (themselves underpinned by ideological motifs such as “individual responsibility”). It should come as no surprise, then, that the application of public health programmes in the area of urban violence is fraught with questions about legitimacy and wider political values and imperatives. Many of the people we interviewed and observed were sceptical about the ability of the approach to address the real causes of the “illness” in question. The implementation of data-driven public health models also had unintended operational consequences, in some cases intensifying the effects of staff

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shortages. However, even where there was significant scepticism around the model and the gang databases at its core, police and practitioners were encouraged to frame their own knowledge and intelligence according to the conventions of the Matrix which, while effective in securing extra resources, resulted in inaccuracies that could be costly for the young people involved. Inevitably this led to the misidentification of gang members, with pressure exerted by Gangs Command to meet certain quotas when peopling the Matrix. This reflected and fed into wider anxieties around racism and racial disproportionality, with some practitioners being critical of the medical model’s pathologising of particular communities. The treatment administered through the form of evidence-based interventions was similarly open to considerations regarding legitimacy. There was concern that the seemingly systematic and sophisticated approach to identifying and gauging the symptoms of urban violence was unmatched by the nature of multi-agency interventions. Indeed, for some respondents the need to secure wider legitimacy for the Matrix—and the day-to-­ day work this entailed—actively hampered the ability to intervene quickly and effectively. The inputting of data was very time-consuming as was the hardening of “soft” intel in the interests of accessing greater operational resources. Such reifying of “soft” intel—in the interests of meeting short-­ term objectives—has led to a significant crisis of legitimacy for the Gangs Matrix spearheaded by the Information Commissioner’s Office (2019) and the charity Amnesty International (2018). Also—and perhaps inevitably—the institutional allegiances of individual team members shaped their perceptions of the legitimacy of the public health model. These (sometimes divergent) institutional concerns were present in discussions of recovery and questions as to how to measure success. For some, objectives were relatively modest; and this was consistent with the way that their employer calibrated success (and failure). For others, especially those closest to ongoing discussions about costs and funding, only headline figures such as annual statistics on SYV could demonstrate success. What united most respondents was a belief that the model could demonstrate success. Pardo’s (2000a, 2000b; Pardo & Pardo, 2018) point regarding legitimacy and the socio-political backcloth to people’s apperceptions is relevant here. The specific historical juncture within which people found themselves certainly tempered and shaped their apperceptions of legitimacy when it came to the public health approach. The apperceptions of a police officer or practitioner were shaped by a set of entangled values and

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beliefs bound up with institutional allegiances and wider political outlook. In trying to reconcile these with the principles of the public health approach, respondents evidently sought accommodations between competing notions of legitimacy. That said, it was telling that for the most part respondents agreed on two things. Firstly, the public health approach had the ability to demonstrate success, despite underlying questions as to its adequacy and legitimacy. Secondly, in the current juncture any far-­reaching programme with the ambition to address the structural issues which really underpinned urban violence seemed almost impossible to imagine. Despite being introduced piecemeal and without any concerted effort being made to explain the model and its suppositions to those tasked with implementing it, the public health approach—helped by wider political and institutional assemblages—seemed to be generating a modest and qualified legitimacy. Finally, we note how analysis of this issue takes us back to Pardo (1995) and Pardo and Prato’s (2019a, 2019b) claims about notions of democracy, citizenship and the legitimacy of rule perpetuated by governments who are interested in protecting the interests of the privileged, even at the cost of those at the bottom of the social hierarchy. We also examine the current climate surrounding public health discourse and, inspired by Judy Arnold’s analysis (2023) of the legitimacy of the medical establishment in the US, ponder whether the crisis of legitimacy surrounding UK government’s handling of COVID-19 pandemic will lead to a more widespread questioning of public health discourse. Finally, there is the possibility of the targets of public health interventions themselves seeking to resist their identification as a “health problem”. This may see them question the suitability of the health approach in the name of something like Elizabeth A. Olson’s “health sovereignty” (2023), or even question the UK government’s very notion of “access” to healthcare (Prato, 2023).

References Amnesty International. (2018). Trapped in the Matrix: Secrecy, Stigma and Bias in the Met’s Gangs Database. Amnesty International. Armstrong, G., Giulianotti, R., & Hobbs, D. (2016). Policing the 2012 London Olympic: Legacy and Social Exclusion. Routledge. Armstrong, G., & Rosbrook-Thompson, J. (2016). Faith, Space and Selfhood in East London ‘Youth Gang’ Culture. Urbanities-Journal of Urban Ethnography, 6(2), 18–38.

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Armstrong, G., & Rosbrook-Thompson, J. (2017). ‘Squashing the Beef’: Combatting Gang Violence and Reforming Masculinity in East London. Contemporary Social Science: Journal of the Academy of Social Sciences, 12(3–4), 285–296. Arnold, J. (2023). The Poverty of Opportunity: Where Are We Going; Where Have We Been. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 8. Palgrave Macmillan. Burgess, E.  W. (1928). Factors Determining Success or Failure on Parole. In A. A. Bruce (Ed.), The Workings of the Indeterminate Sentence: Law and Parole in Illinois. SOS. Dinitz, S., Scarpitti, F. R., & Reckless, W. C. (1962). Delinquency Vulnerability. A Cross Group and Longitudinal Analysis. American Sociological Review, 27(4), 515–517. Elias, N. (1982 [1939]). The Civilising Process—Vol. 2 State Formation and Civilization. Blackwell. Fraser, A., Armstrong, G., & Hobbs, D. (2019). Policing the Olympic Gang: The Rise and Fall of the Portuguese Mafia. Policing and Society, 31(2), 195–208. Gough, H.  C. (1956). California Psychological Inventory. Consulting Psychologists Press. Hartshorne, H., & May, M. (1928). Studies in the Nature of Character: Vol. 1 Studies in Deceit. Macmillan. Hathaway, S. R., & McKinley, M. D. (1942). A Multiphasic Personality Schedule (Minnesota): III. The Measurement of Symptomatic Depression. The Journal of Psychology, 14(1), 73–84. Havinghurst, R., Hoover-Bowman, P., Liddle, G., & Matthews, C. (1964). Growing Up in River City. John Wiley. Information Commissioner’s Office. (2019). Gangs Matrix Enforcement Notice. ICO. Kvaraceus, W. C. (1953). Manual of Directions: KD Proneness Scale and Check List. World Book Company. Mannheim, H., & Wilkins, L. (1955). Prediction Methods in Relation to Borstal Training. HMSO. Mollica, M. (2023). Managing Public Health in a Fragile Consociation: Lebanon between Wars, Explosions and the Covid-19 Pandemic. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 13. Palgrave Macmillan. Olson, E. (2023). Health Sovereignty in West-Central Mexico: Legitimacy from the Grassroots. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 11. Palgrave Macmillan. Pardo, I. (1995). Morals of Legitimacy in Naples: Streetwise about Legality, Semi-­ legality and Crime. European Journal of Sociology, 36(1), 44–71.

14  INTERROGATING THE PUBLIC HEALTH APPROACH: LESSONS… 

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Pardo, I. (2000a). Morals of Legitimacy: Interplay between Responsibility, Morality and Trust. In I.  Pardo (Ed.), Morals of Legitimacy: Between Agency and System. Berghahn. Pardo, I. (2000b). When power Lacks Legitimacy: Relations of Politics and Law to Society. In I.  Pardo (Ed.), Morals of Legitimacy: Between Agency and System. Berghahn. Pardo, I., & Prato, G. B. (2018). Introduction: The Ethnography of Legitimacy and Its Theoretical Ramifications. In I. Pardo and G. B. Prato (Eds.), Urban Ethnographers Debate Legitimacy. Special issue,  Urbanities-Journal of Urban Ethnography, 8(1), 1–8. Pardo, I., & Prato, G. B. (Eds.). (2019a). Legitimacy: Ethnographic and Theoretical Insights. Palgrave Macmillan. Pardo, I., Prato, G. B. (Eds.). (2019b). Urban Ethnographers Debate Legitimacy. Special Issue, Urbanities-Journal of Urban Ethnography, 8 (Suppl. 1). Prato, G. B. (2020). Introduction: Pandemic Emergency, Solidarity and Brutus Tactics. In G. B. Prato (Ed.), City Life and Beyond in Times of Pandemic. Special issue, Urbanities-Journal of Urban Ethnography, 10(Suppl. 4). Prato, G.  B. (2023). Health Inequalities and Ethics of Responsibility: A Comparative Ethnography. In I. Pardo & G. B. Prato (Eds.), The Legitimacy of Healthcare and Public Health: Anthropological Perspectives, Chapter 2. Palgrave Macmillan. Riemann, M. (2019, February 6). The Costs of Treating Urban Violence as a “Public Health” Problem. Discover Society. Rosbrook-Thompson, J. (2018). Understanding Difference amid Superdiversity: Space, ‘Race’ and Granular Essentialisms at an Inner-City Football Club. Sociology, 52(4), 639–654. Rosbrook-Thompson, J. (2019). Legitimacy, Urban Violence and the Public Health Approach. In I.  Pardo and G.  B. Prato (Eds.), On Legitimacy: Multidisciplinary Reflections. Special issue,  Urbanities: Journal of Urban Ethnography, 9(Suppl. 2), 37–43. Rosbrook-Thompson, J., & Armstrong, G. (2022). Respectability and boundary making on a superdiverse housing estate: The cross‐racial deployment of intra‐ ethnic stereotypes. British Journal of Sociology, 73, 259–272. Rosenberg, M. (1965). Society and the Adolescent Self Image. Princeton University Press. Stott, D.  H. (1963). The Social Adjustment of Children. Manual to the Bristol Social adjustment Guides. University of London Press. Wacquant, L. (1996). The Rise of Advanced Marginality: Notes on its Nature and Implications. Acta Sociologica, 39(2), 121–139. Weber, M. (1978 [1922]). Economy and Society: An Outline of Interpretive Sociology. : University of California Press.

CHAPTER 15

Maintaining the Health of the Public: Containing the Threat of Terrorist Resurgence in Contemporary Peru David Nugent

Contemporary societies all around the globe have come to share an increasingly common experience in recent decades. A growing number have been subjected to protracted periods of generalized violence, instability or epidemic disease that appear suddenly, inexplicably, to engulf the social order and traumatize the population. In this chapter I am concerned with the process of recovery—with how societies seek to heal and make themselves whole again in the aftermath of such traumas. Complicating their efforts to do so, I suggest, is the following: although such societies are generally able to take the initial steps towards recovery— and although they succeed in eliminating most visible signs and symptoms of distress—they nonetheless remain plagued by doubts. Not understanding the reasons that they were stricken in the first place these societies are often haunted by fears that the very sources of danger and disease they

D. Nugent (*) Emory University, Atlanta, GA, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 I. Pardo, G. Prato (eds.), The Legitimacy of Healthcare and Public Health, Palgrave Studies in Urban Anthropology, https://doi.org/10.1007/978-3-031-25592-2_15

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have recently overcome could easily return. Indeed, it is feared that the destructive forces that so traumatized the social order have not been permanently or definitively eliminated but only driven underground. Here they remain, just beneath the surface, waiting for the opportunity to return and to wreak havoc yet again upon the social order. Fearing what cannot be seen and plagued by lingering doubts, societies in recovery find it very difficult to move past the periods of overwhelming distress they are so desperate to leave in their wake. How do  societies struggling to free themselves from the weight of a deeply troubling past contend with such profound fears and uncertainties? How can people be confident that they have succeeded in overcoming their past traumas, and are safely and securely on the road to recovery? How can they be sure that the state to which they have so recently returned—a state of seeming wellbeing, harmony and normalcy—is not illusory rather than real, temporary rather than permanent? In other words, how can people be sure that conditions have changed sufficiently that they can put their fears behind them and focus on the future? To the extent that questions of this nature remain unresolved, people will continue to live in dread of the past. Indeed, they will continue to fear the prospect of falling back into the abyss from which they so recently escaped. Furthermore, they will continue to be plagued by such dark fears and fantasies despite the appearance of calm, and despite (or perhaps because of) repeated assurances that the danger has passed. These questions suggest others. How do societies that are in recovery from trauma guard against the danger of relapse? What strategies do they employ to contain potential threats from the past, which are feared to be clamouring to resurface in the present? What measures do these societies adopt to surveille the social landscape for possible signs of danger—for signs that the past is far closer to the present than the notion of a safe and secure recovery would allow? What would such signs look like? And when traumatized societies encounter evidence of a resurgence of danger or disease, what steps do they take to eliminate or neutralize the threats? In other words, how do such societies seek to sustain the recovery process? How do they attempt to ensure the continued health and wellbeing of the collective—a state that is feared to be highly unstable and insecure? In the pages that follow I explore tentative answers to these questions. I argue that the above-mentioned fears, doubts and insecurities about recovery—which ensue when an ominous past continues to loom over a precarious present—are central elements of a distinctive social condition

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and temporal state. I refer to this state as “the aftermath.” Scholars have been slow to recognize the aftermath as a distinct condition—one with its own singular, contradiction-filled tendencies. They have been equally slow to recognize how widespread a condition the aftermath is. Problems stemming from the contradictions of the aftermath, I suggest, are more-or-less ubiquitous to societies that are in recovery—societies that struggle to put a traumatizing past behind them. As noted above, in recent decades a growing number of societies have been forced to confront this very problem. The remainder of the chapter is devoted to exploring the distinguishing features of the aftermath, its corrosive impact on efforts at recovery and its ongoing obsession with relapse. We may begin, however, with some preliminary observations: the aftermath may be characterized as a peculiar state of unresolved tension between the present and the past that threatens to preclude the possibility of there being a future. In the aftermath, the present is in a state of constant but unacknowledged dread of the past. Indeed, this condition is characterized by a series of powerful ambiguities about recovery and the threat of relapse. These ambiguities, however, masquerade publicly as certainties. Only in this way can the past be kept at bay and the future be kept within reach. In the aftermath, what is asserted in public to be certain about recovery is feared in private to be uncertain, and what is claimed to be permanent is feared to be temporary. Similarly, what is asserted in public to be real about recovery is feared in private to be illusory, and what is claimed to be settled is feared to be in question. For reasons to be discussed presently, the tension between public claims and private fears cannot be resolved. This unresolved tension, however, leaves people highly sceptical of public truth claims about the supposed success and security of the recovery process. Because they have nowhere to turn in order to resolve their fears, however, people are equally unsure that there is any reason to have doubts. As a result, they are compelled to live in a constant state of confusion, anxiety and doubt about public claims and private fears alike. It is impossible to reconcile public claims with private fears about recovery and relapse because of an additional feature of the aftermath. In societies seeking to free themselves from a troubled past, it is often politically dangerous for people to express their anxieties. Indeed, there is enormous public investment in the claim that things have returned to normal and that the past has been left behind. Only in unusual circumstances—generally, conditions of anonymity or privacy—do people feel free to reveal their

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doubts or fears that recovery is proceeding as publicly claimed. Only in even more exceptional circumstances do people regard themselves as being at liberty to express their doubts about whether or not recovery (rather than a radical alternative) should even be a goal. Doubts or fears about recovery are thus relegated to a private domain, and may not be safely uttered in public. In the process, the private fears that silently permeate the present come to be equated with the subversive dangers that so openly traumatized the past. What is hidden in the present comes to be associated with past forces that could provoke a relapse, forces that could undermine the recovery process, that could drag society back into trauma. Indeed, such doubts and fears are regarded as a dire threat to the ability of such societies to put the past behind them. In addition to being characterized by the existence of a tense boundary between the present and the past, the aftermath is characterized by a parallel boundary between public claims and private fears. Furthermore, as the foregoing suggests, these two divisions tend to merge with and co-­ constitute one another. As they do so, societies in recovery come to exhibit a distinctive topography of rule (Ferguson & Gupta, 2008). Indeed, managing the contradictions of the aftermath and maintaining society on a path towards the future generate a landscape of recovery that has distinctive characteristics. Society comes to be divided into two separate and discrete levels. The first of these is a surface level of appearance, which is made hyper-visible to the naked eye. The second is a hidden level lying beneath the surface, one that (in most circumstances) must be felt or sensed rather than seen. Each of these levels is said to have its own moral and political valence. The level that is visible and transparent—which is associated with recovery—is condoned and celebrated. The level that is hidden—which is associated with relapse—is proscribed and condemned. Indeed, people are encouraged to inhabit and invest exclusively in the surface level—to embrace the (appearance of) certainty, permanence and confidence about recovery. They are equally called upon to eschew, feign ignorance of and when necessary express abhorrence for the level that lies beneath—a domain of doubt, insecurity and questioning about recovery. People are called upon to feign disinterest in the subterranean domain despite their keen awareness of (and their fear of and/or fascination with) the depths. The aftermath is further defined by a distinctive temporality. In recovery, time takes on a peculiarly elastic quality. The authorities, who are charged with overseeing the recovery process, seek to accelerate time, so

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that it moves as rapidly as possible away from the dangerous past and towards a safe future. People are called upon to distance themselves from what has been—to view the recent past as if it were another age altogether. Indeed, they are compelled to treat the era of recent distress as if it were ancient history, as if it had no connection to or relevance for the here and now. This is so despite (or because of) the fact that the past is still fresh in people’s minds. Indeed, it is experienced as uncomfortably close to—and as casting a dark shadow over—the present. While people are called upon to view the past as distant and remote, they are equally compelled to view the future as tantalizingly close, as if it were just around the corner. Indeed, in periods of aftermath people are called upon to do away entirely with the distance between the present and the future, to treat the present as if it were the future. They are called upon to embrace a yet-to-be achieved state of security, prosperity, health and calm as having already arrived, even though it is still largely imagined or desired. In other words, they are encouraged to view the past—which actually occurred—as if it never was. They are encouraged to view the future—which has yet to occur—as if it already is. The distinctive topography and temporality of the aftermath is intimately related to an equally distinctive notion of a healthy society and a healthy public. Healthy thoughts, behaviours and attitudes are said to be those of the surface, those that emphasize the appearance of things, those that stress certainty and permanence, that emphasize the unambiguous, resolved nature of recovery. Dangerous or pathological thoughts, behaviours and attitudes, on the other hand, are said to involve the subterranean realm—the hidden, the impermanent, the unresolved dimensions of recovery. Furthermore, dread of the underground realm and its dangerous power means that the health of society is regarded as being in a perpetual state of insecurity, one that can only be maintained by means of constant and ongoing vigilance. This is because, as noted above, it is feared that the forces that threaten the social wellbeing have never been definitively or fully defeated, and are just beneath the surface, waiting to strike. In addition to exploring the distinctive topography and temporality of the aftermath, and its equally distinctive understanding of social health, I also explore how the aftermath affects political legitimacy (Pardo & Prato, 2016; Weber, 2009). I engage with these issues through an analysis of political conditions in contemporary Peru. Peru provides an ideal setting in which to explore the dynamics of the aftermath. The country has spent several decades seeking to navigate a return to normal after enduring a

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protracted period of generalized violence and political instability that traumatized virtually the entire national population. The trauma in question was a brutal civil war, which lasted for about a decade-and-a-half (roughly, from 1980 to 1995), and devastated the country. The conflict revolved around Sendero Luminoso (the Shining Path), an armed, Maoist revolutionary group, which unleashed a nation-­ wide campaign of terror and violence in an effort to seize state power. The Peruvian military was called in to prevent this from happening, and in combating the Senderistas adopted tactics that were at least as brutal as those of their adversaries. The ensuing civil war fought between these contending forces resulted in the deaths of approximately 70,000 people, the vast majority indigenous, rural non-combatants. It was accompanied by widespread torture, rape, brutality and gratuitous violence on the part of the forces of order, and on a scale that shocked mainstream society. It also led to ever-more dictatorial and corrupt government regimes. Peruvians have struggled mightily to make sense of the civil war—to understand why it occurred and what the war implies about Peru as a nation. For the country’s public self-image is that of a liberal democratic nation-state that embraces the rule of law, is committed to the wellbeing of all its citizens and is steadily marching forward through empty homogeneous time (Benjamin, 1968) to an ever-brighter future. It is difficult to reconcile the rise of the Shining Path with this image. For Sendero was a fanatical movement that was willing to go to virtually any lengths to do away with the profound injustices and inequalities that the Maoists said had characterized the country for centuries. It is equally difficult to reconcile Peru’s public self-image as a liberal democratic nation-state with the fact that the Shining Path attracted a sufficiently broad and committed following that it came close to seizing power—despite the fact that the party embraced the indiscriminate use of violence and the shedding of blood on an unprecedented scale. Finally, it is difficult to reconcile Peru’s public self-image as a liberal democratic nation-state with the behaviour of its armed forces—whose atrocities during the civil war marked a descent into the same depths of barbarity as the Maoists. Indeed, it was the revolutionaries’ barbarity, their disavowal of the rule of law and their tendencies towards totalitarianism that were said to have justified an armed response from the military. Although government forces ultimately prevailed over Sendero, by the time the conflict came to an end the behaviour of the authorities had become so extreme that the differences between the opposing forces had

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become blurred. Indeed, for many people it was not at all clear which of the two adversaries had done more harm to the general population—the Maoists or the government. It has been in this context of profound ambiguity about what Peru is, what the country stands for, who it defends and what it attacks that post-­ conflict regimes have sought to chart a path beyond the pathological conditions of the civil war. It is in this same context that these regimes have sought to establish conditions that would support a healthy social order. These same conditions represent the context in which Peru has attempted to leave the past behind—and in which the topography and the temporality of the aftermath have taken shape. It is in this same context that the authorities have sought to represent doubts about recovery as certainties, illusions about recovery as realities. The authorities have done so in part by monitoring the social landscape for any and all indications of a possible relapse, and taking steps to eliminate (or carefully control) any and all evidence of forces that would drag the country back into distress. Indeed, since the end of the internal armed conflict (which is generally dated to the year 2000), the authorities have policed the public sphere for any tell-tale sign of sympathy for the Shining Path. At the same time, successive governments have committed the country to a future of market-based health and prosperity based on the tenets of neoliberalism. On the surface, recovery has appeared to proceed smoothly. A sustained period of national economic growth during the post-conflict era— based on the export of primary (predominantly mining) goods—supported the image of Peru as a country that had left its troubled past behind. So too did official figures claiming an impressive reduction in levels of poverty and inequality, as reported by the World Bank and US AID.1 Even so, the authorities have remained ever vigilant for signs of a possible resurgence of the terrorist threat. In the process, they have established strict and narrow limits on what could and could not be said about the civil war, and about the Shining Path. Much to the authorities’ dismay, however, signs of a possible relapse have appeared with some frequency, despite official efforts to protect against this very eventuality. Indeed, there have been an entire series of 1  See https://www.worldbank.org/en/news/feature/2013/06/27/peru-­ comprometido-­con-reducir-pobreza; and https://2012-2017.usaid.gov/frontiers/2014/ publication/section-3-role-in-extreme-poverty-reduction.

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troubling developments over the last two decades that the authorities have interpreted as suggesting the lingering presence of sympathy for “subversive causes.” Making matters worse is the fact that large numbers of people have been involved. As a result, the authorities have been involved in an ongoing struggle to “silence the present” (Trouillot, 1995)—in part, by maintaining a clear and unambiguous boundary between the Senderista past and the neoliberal present/future.

Sustaining the Recovery, Surveilling the Public The profoundly unsettling events of the civil war era represent a deeply troubling chapter in the history of Peru. People struggle to make sense of this episode to the present day. This is not the first time, however, that a national society has been compelled to confront the significance of profoundly troubling developments that contradict mainstream understandings of what the society is and does. Nor is it the first time that a society has been compelled to re-think its history in light of shocking events that once would have been considered impossible. Nor is Peru’s attempt to grasp the meaning of the Sendero era the first time that a society has been forced to come to terms with developments that are so very disturbing that they loom up out of the past to demand an accounting from the present. Rather, as noted above, conditions of the aftermath are encountered with ever-greater frequency the world over. The general populace in Peru has been encouraged to view the civil war era as “uncanny” (Bryant, 2014). That is, they have been led to develop a hyper-awareness of the terrorist past as a period that was wholly without unprecedent—a time apart, as it were, a period that was so violent and so chaotic that it interrupted the normal course of Peruvian history. Indeed, powerful forces have been at work to construe the civil war period in precisely these terms—as its own discrete (and terrifying) moment, an incomprehensible era that was qualitatively different from what had come before and what has occurred since. These forces include the country’s most important political and cultural institutions—the mass media, the courts, the law, the forces of order, sites of memory and memorialization and so on. In the mainstream political imaginary, however, it is not simply that the Sendero era is viewed as uncanny. The uncanniness of the recent past is of a very special sort. First, it is an uncanny that is regarded as profoundly subversive—as being the very anathema of the existing social order. Second, it is an uncanny that is seen as a source of the most virulent

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contagion—so much so that even the most fleeting of encounters with it poses grave risks to any and all so exposed. Third, although encounters with this virulent uncanny are indeed regarded as dangerous, they are also feared to be virtually inevitable. This is because Sendero’s virulent subversive uncanny is also seen as having an almost unlimited ability to spread or “travel.” It is regarded as a force that can appear suddenly, out of nowhere, with no warning, at virtually any location. In other words, Peru’s virulent uncanny is seen as alarmingly mobile— as a force that cannot easily be limited or contained, either in time or in space. Deepening the risks represented by encounters with this dangerous force is the following: Peru’s virulent uncanny is also seen as being voracious. In the course of its travels, this uncanny is suspected of seeking to devour everything in its path—as a force that is on an endless quest to colonize new domains, to infect new hearts and minds. Finally, the subversive power of this highly contagious, mobile, voracious uncanny is viewed as virtually inexhaustible. It is seen as a source of contagion that will always be there—one that will never diminish, will never abate. If great vigilance is exercised, the authorities appear to believe, this subversive uncanny can perhaps be contained. But it can never be fully defeated. While all these features of the virulent uncanny represent potential risks to the present, it is the ability of the uncanny to travel that poses problems of an especially pressing and grave nature. The authorities fear that the malevolent Sendero past is so very mobile that it has succeeded in overcoming the barriers of time and threatens to overwhelm and subsume the present. As a result, even the vaguest hint of support for the Shining Path is likely to set off alarm bells in official circles. These same fears are also likely to take events that would in other circumstances be seen as largely innocuous and transform them into existential threats. A case in point is the death, on Sept. 11, 2021, of Abimael Guzmán, the octogenarian leader of the Shining Path—an event that brought on something of a national crisis. By the time of his passing Guzmán had become a pathetic and somewhat comical figure. He had spent the previous twenty-nine years in a maximum-security prison in Lima, having been arrested by the anti-­ terrorism police in September 1992. It is true that he had once been the supreme leader of Peru’s most feared, revolutionary movement. By the time of his demise, however, those days were very long gone. Scarcely a month after his capture in the early 1990s, Guzmán did a complete about-­ face regarding violence, the armed struggle and the revolutionary cause.

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He appealed to the government for peace, told his followers to lay down their weapons and called for an end to the war. From that point on, Guzmán largely retreated from the public eye and little was heard of him. There was no indication that, as a prisoner, he continued to do what he had formerly done—master-mind a violent, insurrectionary movement that was intent on seizing state power. Nor was there any indication that such a movement continued to exist. After Guzmán’s arrest the Shining Path fractured and then dissolved. Although small groups of Senderistas continued to operate in remote, out of the way settings, the movement was for all intents and purposes defunct. By the time Guzmán died the Shining Path had been moribund for decades. This made the public reaction to his death all the more puzzling. If the Shining Path were truly considered a thing of the past, the passing of its leader—who had spent almost three decades behind bars—would perhaps have been seen as news worthy, or even as a reason for mild celebration. But there would have been no cause for alarm. In the eyes of many Peruvians, however, neither Guzmán nor the movement he led is a thing of the past. To the contrary, the terrorist threat is widely seen as being very much alive. As a result, despite the fact that Sendero Luminoso has long since ceased to represent any kind of organized or serious threat, Guzmán’s cadaver was nonetheless seen as exuding a highly dangerous power. Indeed, so potent did the authorities (as well as much of the public) consider his corpse to be that they were terrified that Sendero’s former leader would be able to mobilize a following even after death, from the grave.2 As a result, they were in a state of the most profound anxiety about what to do with his lifeless remains. Guzmán’s corpse was treated as if it were a fetish, and an especially dangerous one. That is, the authorities treated his cadaver as if a highly malevolent and contagious power emanated from it—a power that was very difficult to control. This virulent force could not be allowed to roam freely, they believed, but rather had to be carefully and thoroughly contained. To do otherwise, their actions implied, would be to put the entire nation, the entire process of recovery, at grave risk. Consumed by 2  The following account is based on a review of 283 newspaper articles in El Comercio and La República, Peru’s two most widely read newspapers. The articles include all those that mention Guzmán from 11 September 2021 (the day of this death) through 24 September 2021 (the day of his cremation). I am indebted to William Boose for his excellent research assistance.

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these fears, the authorities were not only alarmed but also mystified about how to contain the threat represented by Guzmán’s lifeless remains. The authorities were so profoundly unsettled about what to do with his dangerous corpse because they feared that once the cadaver was interred, it would be impossible to contain its virulent contagion. It would also be impossible, they believed, to prevent people from being infected by that power. Indeed, the government feared that, should they allow Guzmán to be buried, the location where his lifeless remains would be laid to rest would become a pilgrimage site. Such a site, they feared, would attract many existing Senderistas, who were currently thought to be in hiding. The authorities were equally concerned, however, that a grave site for Guzmán would also attract many new followers. Thus inspired, officials feared, terrorists would seize upon the opportunity afforded by the death of their leader to re-group and would begin the nightmare of the recent past all over again.3 So virulently contagious was Guzmán’s lifeless corpse considered to be that the prospect of burying him in Peruvian soil created a huge controversy in the country. It also set off the loudest of alarm bells in official circles and resulted in the “machinery of state” being (temporarily) paralysed. By law, Guzmán’s remains should have been released to his next of kin—in this case his widow, Elena Iparraguire. The complication was that she was Sendero’s second-in-command, and was herself serving a life sentence in prison for crimes committed as a terrorist, as her husband had been doing until his death. When Guzmán died, his widow filled out the forms that all Peruvians must complete to take possession of a deceased relative’s remains—a development that was entirely legal, and in other circumstances would have been seen as utterly unremarkable. So great was the fear of the malevolent power of Guzmán’s corpse, however—and so deep was the concern that burying him could inspire a Sendero resurgence—that a prominent public prosecutor took an unprecedented step. He decided to ignore the law he had sworn to uphold and denied Iparraguire’s request. As a result, Guzmán’s body fell into a kind of liminal state, in which it no longer had any clear legal status, and in which it was unclear who had the authority to decide what its fate would be.

3  It is hard not to think of the novel Santa Evita, by Tomas Martínez (1996), which deals with the perambulations of the embalmed corpse of Eva Peron.

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The danger posed by Guzmán’s corpse, and the question of what to do with it, “travelled” to very highest echelons of government. Having violated long-established procedures for the disposal of human remains, the Ministry of Justice petitioned Peru’s Cabinet of Ministers to approve a special request that would authorize an exception to the law the Ministry had already broken. The petition sought to strip Iparraguire of her legal rights and to transfer those rights to the Ministry, which would also be authorized to cremate the body and dispose of the ashes. This “innovation” would have resolved crisis, but instead it provoked new and even more alarming accusations and concerns. For Peru’s Cabinet was slow to respond to the Ministry’s request. This led to paranoid fears that Guzmán had not actually died, and to accusations that members of the Cabinet— and even the president—were secretly working with Sendero to arrange for Guzmán’s release. Indeed, some conservative politicians went so far as to accuse the government of having made up Guzmán’s death. They wanted proof that he had really died and demanded to be shown the body. As a result, Guzmán’s corpse remained in limbo, awaiting a final determination about its fate and about who was empowered to decide it. The Executive branch of government having failed to settle the matter, and the Judicial branch apparently feeling that it lacked the authority to do so, Congress was called upon to act. Congress met in emergency session and rushed through legislation that authorized the Ministry of Justice to cremate the body and dispose of the ashes of those who die after having been convicted of terrorism. The law was named for Abimael Guzmán (Montoya Rojas, 2021).4 Even these steps, however, did not fully calm official fears. So anxious was the government to eliminate the danger represented by Guzmán’s lifeless but malevolent body that the Ministry of Justice proceeded to dispose of his remains immediately, at all possible speed. Within 24 hours they had done away with his corpse. In the process, the authorities took additional precautions. They went to great lengths to ensure that Guzmán’s cadaver did not fall into the wrong (i.e., subversive) hands—hands, they feared, that would do everything possible to preserve the corpse as a dangerous source of Sendero’s uncanny power. To guard against the possibility that terrorists might seek to steal Guzmán’s body before the authorities 4  For a more diverse set of Peruvian commentaries on Guzmán’s death, and on the threat of the terrorist past looming over the present, see Pajuelo, 2021, Tanaka, 2021 and Uccelli, 2021.

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could destroy it, the corpse was transported to the crematorium under heavily armed guard. Even these precautions, however, were considered insufficient to protect the country from the threat of contagion represented by Guzmán’s cadaver. To ensure that no one could locate his remains after cremation— and thus that no tomb for Guzmán could be constructed—the authorities decided that it was necessary to dispose of his ashes at a secret, undisclosed location. Reports were, however, that care was taken to scatter the remains over the Pacific Ocean, and not risk having them fall anywhere on Peruvian soil. Thus did the authorities seek (yet again; Montoya 2021) to purge the nation of the nefarious influence of the Shining Path. Thus did they attempt to consign Abimael Guzmán (and Sendero) to oblivion. Thus did the forces of order attempt to eliminate what they regarded as a major threat to recovery—by literally scattering one of the key remaining sources of Sendero’s power to the four winds.

Antecedents Dramatic though this example may seem, it is far from being an isolated case. Ever since Sendero’s demise there has been ongoing concern in official circles with preventing the subversive past from overwhelming the present. A tomb for Abimael Guzmán was regarded by the authorities as a point from which Sendero’s subversive uncanny power could radiate outward to infect the general population. By taking emergency measures, the forces of order were able to prevent such a site from coming into being. What is noteworthy is that they felt that it was necessary to take such measures. In other cases, however, the forces of order have not been so fortunate. Rather, in their eyes, since the end of the internal armed conflict the national territory has become littered with dangerous sites that threaten to do precisely what they feared a Guzmán tomb would have done. Some of these sites are museum-like locations where Senderista artefacts that have been seized by the authorities are on public display—relics that are believed to still hold great subversive power, and thus to be a threat to all members of the public who encounter them. Other sites are regarded as dangerous because they offer problematic interpretations of the civil war. Indeed, any interpretation of the civil war that is seen as casting unwarranted aspersions upon the armed forces or is insufficiently condemning the Shining Path is regarded as representing a potential “opening” through the contagion of terrorism might spread. The LUM—El Lugar

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de la Memoria, la Tolerancia y la Inclusión Social (The Place of Memory, Tolerance and Social Inclusion)—the museum that is intended to memorialize Peru’s brutal internal armed conflict (Feldman, 2021)—is the most prominent and visible of the sites that represent this danger. Members of the armed forces have been deeply concerned about how Senderista artefacts are displayed at the LUM. Unless these relics are displayed in an unremarkable, mundane manner, the military has declared, the LUM “could be taken as a pilgrimage centre, a place where terrorists visit frequently, those who are free now, their relatives … the front organizations. Like a pilgrimage centre, like a sanctuary for terrorists. It [is] very dangerous” (Feldman, 2021: 3). Even taking these precautions, however, would not solve the problem. The military feared that the subversive force of the artefacts on display was so powerful that Senderistas would be drawn inexorably to the relics at the museum and would attempt to steal them. Just as they feared that control of Abimael Guzmán’s lifeless corpse would empower the terrorists, the authorities also believed that possessing the objects on display in the LUM would do the same. It would help Sendero regain its (partially lost) power. Security at the LUM would therefore be a major problem. The armed forces reached this conclusion after having seen what in their eyes was the alarmingly inappropriate manner in which Senderista artefacts were displayed at a smaller museum that was run by DINCOTE— the anti-terrorism police.5 The military felt that the way in which Shining Path artefacts were shown at this museum verged on the museum becoming a kind of chapel or altar to Sendero—one that utterly failed to purge these relics of their virulent, subversive power. The military further feared that those who visited the museum and experienced its altar-like conditions could well be infected by the uncanny power of the artefacts on display and could be drawn to the subversive movement. Rather than present the artefacts in this manner, the armed forces believed it would have been preferable to burn them. As was true with the corpse of Abimael Guzmán, then, destruction by fire seems to be the only way that the military feels that it can destroy the uncanny power emanating from relics of the Senderista past.

5  DINCOTE is an acronym for the Dirección Nacional contra el Terrorismo (the National Counterterrorism Directorate), a subdivision of the Civil Guard, which is one of three departments within Peru’s national police force.

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As the foregoing suggests, the authorities regard themselves as having been involved in a “holding action” to contain the subversive contagion of the Shining Path ever since the end of the civil war. That is, they see themselves as seeking to manage a dangerous landscape of risk—as surveilling a social geography that seems ordinary and mundane on the surface, but that conceals more serious threats just beneath the surface. Indeed, a great many social phenomena—indeed, virtually any public representation of the civil war era—have provoked official fears that they could contribute to a terrorist resurgence. In the view of the forces of order, so dangerous is the lingering influence of Sendero that any mention of the internal armed conflict that does not explicitly and unambiguously vilify and condemn the Maoists and simultaneously exalt and celebrate the armed forces risks being seen as heretical. Indeed, in 2012 the government passed the “Apology for Terrorism Law.” According to this piece of legislation, anyone who is found to have made statements that can be construed as overly sympathetic to the Shining Path, or overly critical of the armed forces, is guilty of treason. Those convicted can spend as much as 15 years in jail. Peruvians who are outside of the country and are found guilty of having violated the Apology for Terrorism law are threatened with the loss of citizenship. Any such reference—whether in word, print or public display—risks becoming seen as a flash point that could facilitate the return of the Shining Path. It risks being regarded as a “portal” through which the party’s virulent, malevolent contagion can radiate outward to colonize new domains, to infect new hearts and minds. Indeed, this was precisely the authorities’ anxiety about allowing Abimael Guzmán to be buried— something that they were determined to avoid. As noted above, however, they could do so only by violating both custom and law, and by-passing legislation that was a direct response to the singular case represented by Guzmán’s corpse. Together with the “Apology for Terrorism Law” (see above), the new piece of legislation that focuses on the remains of Guzmán may be thought of as part of the government’s ongoing efforts to build up an edifice to protect society from the threat of malicious, subversive and contagious forces from the past—forces that should have been eliminated decades ago, but that keep coming back to life to haunt the present. In other words, public references to the civil war are seen in official circles as giving the forces of order the opportunity to assess the degree to which they have been successful in inoculating the population against the dangers represented by the Shining Path. Each public reference to the

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internal armed conflict affords the government the chance to administer a kind of informal oath of loyalty to the general population. Each such reference allows the authorities to assess whether or not the population takes the opportunity to swear to their total rejection of Sendero and their unconditional support of the government. Each such reference also, however, poses a potential threat. For those who have been given this opportunity to swear often fail to assuage  official fears—fail to convince the forces of order that they are sufficiently or genuinely loyal. The reasons for this are straightforward. On the one hand, because the forces of order suspect that much of the population (especially poor, rural and marginal groups) were (and are) sympathetic to the Shining Path, they come into each test of the efficacy of their inoculation programme with deep scepticism about the loyalty of the general populace. This fact makes it very difficult for virtually anyone to satisfy the authorities no matter how frequent (or seemingly heartfelt) the declaration of loyalty. On the other hand, the many groups that have provided alternative accounts of the civil war era have done so in the pursuit of agendas that have little in common with the fears of the forces of order. Very few of those who have pursued such alternative projects have any interest whatsoever in locating themselves definitively on one side or the other of a purported boundary between good and evil. And yet this is the way their actions have been interpreted in official circles. While the authorities have done everything in their power to control the public narrative about Sendero Luminoso and the internal armed conflict, they are far from being the only ones who have offered public interpretations of the war era. As an important body of scholarship has shown, representations of the civil war remain highly contested, as civilian organizations, artists and intellectuals have all offered interpretations of their own.6 These alternative representations are clearly visible at the approximately 200 “memory sites” located all across the country, where local populations have taken it upon themselves to create their own memorials, in which they remember those who they lost in the war.7 For the purposes of the present discussion, what is relevant about these alternative representations of the civil war is how they are regarded in  A good introduction to this topic is to be found in the contributions to Milton, 2014.  A more detailed discussion of these memory sites is beyond the scope of this chapter. For more in-depth coverage, see Drinot, 2019, Hibbett, 2017, Ledgard et al., 2018, Milton, 2018 and Sodaro, 2018. Also relevant are the contributions to Milton, 2014. 6 7

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official circles. In each case, those who have been involved in generating these alternative views have of necessity proceeded with a keen awareness of the dangers involved in pushing too far at the (ill-defined) limits imposed by conservative groups on what may be said about the country’s violent past. Even so, they are still viewed with great suspicion by those groups. Many of these alternative projects have been subject to self-­ censorship and others to official censorship and even closure. Others have been monitored closely by the forces of order. Prominent among these sites is the art installation entitled the “Ojo que Llora” (The Eye that Cries), a well-known and frequently visited Lima memorial where those killed or disappeared in the civil war are publicly commemorated (Drinot, 2009). Important voices in the armed forces are convinced (incorrectly) that Ojo que Llora is a central meeting place for Sendero Luminoso (Feldman, 2021: 3)—that it, like the LUM and the DINCOTE museums, is a kind of pilgrimage site where Senderistas come to remember their dead and to re-discover and regain their power. As this obsession with potential pilgrimage sites shows, the authorities are deeply concerned about the dangers represented by virtually any lingering trace of the Shining Path. Indeed, each trace is treated as if it were a potential entry point through which the highly contagious forces of subversion represented by Sendero’s uncanny might spread. Those who have organized, contributed to or participated in generating these alternative representations likewise risk becoming the object of great suspicion and hostility. It is not uncommon for them to be regarded as the tip of the proverbial iceberg—one that is feared to be enormous in size, lying just beneath the surface and representing the most profound danger to society. Nor is it unusual for the forces of order to believe that the most radical of steps must be taken to eliminate or at least control the threat represented by these sites. As the foregoing suggests, in official circles the present is regarded as a highly precarious and unstable state. Whatever calm and normalcy the current moment may appear to have is deceptive. It is also not to be taken at face value. Although direct evidence of a Sendero threat is largely wanting, government officials fear that they see suggestions of that threat all around them. They also suspect that they would see far more evidence if they allowed the forces of subversion a free hand. Indeed, as suggested by the controversy surrounding the fate of Abimael Guzmán’s remains—and despite an overall lack of evidence—the authorities fear that Sendero’s uncanny is working its dark magic on the present surreptitiously. In other

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words, the past is seen as actively haunting the present despite a dearth of evidence to that effect, and despite the decades that have elapsed since the end of the war. The fact that the Senderista past refuses to stay in the past suggests that the past has somehow violated its implicit compact with the present—that the past has failed to conform to the norms and prescriptions that would ordinarily allow the past to stay in its proper place. Rather than remain safely where it belongs, the past refuses to let go of the present, but instead seems determined to pull the present backward in time. One of the major dilemmas that the authorities have faced since the end of the civil war is that the present seems to have only a limited and fragile autonomy with respect to the past. Indeed, officials appear to regard the barrier between the past and the present as dangerously thin and permeable, as verging on the non-­existent. It would take little, their actions suggest, for the present to fall back into the past. The danger of the present simply capitulating to the past is therefore considered a constant. In an effort to guard against this ongoing, looming threat, the present must be carefully monitored. The authorities have therefore taken it upon themselves to be on the constant lookout for any and all signs of the spread of subversion—for any indication that the uncanny past is overcoming the barriers meant to contain it, that it is regaining its former strength and is threatening to overwhelm the present. Officials have also taken it upon themselves to try to prevent this from happening. In order to do so, they appear to believe, great sacrifices must be made by one and all. Only in this way will it be possible to break free of the past. Only in this way will it be possible to ensure that the country has a future. As the foregoing suggests, in light of the ongoing threat represented by the uncanny Senderista past, a major challenge facing the government has been how to strengthen the barrier between past and present—to establish sufficient distance from the past to be free of it. Towards that end, there have been repeated calls from official circles not to dwell upon the violence and chaos of the Senderista era, but rather to leave the past in the past, to look forward, to embrace the (neoliberal) future (Rojas-Perez, 2008, 2017). Despite these appeals, however, in the official imagination the past has refused to loosen its grip on the present. Indeed, the Sendero past is still regarded as hovering dangerously close to the here and now. Furthermore, it is seen as poised to seize hold of the present the very moment that the authorities let down their guard, the very instant they

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become lax in their vigilance. In other words, the present is seen as being actively haunted by shadows of the Senderista past.

Coda As noted above, among the defining features of the aftermath is that doubts about recovery are represented as certainties and illusions are represented as realities. Furthermore, doubts and uncertainties are relegated to a private, hidden domain, whereas certainties and illusions dominate and even define the public. Even so, fear of the underground domain means that the forces of order regard the public sphere as being under constant threat and feel compelled to police the public for any and all signs of danger and potential relapse. These dangers—which had been carefully controlled and contained in years prior—exploded into view during the summer of 2021. In the hotly contested presidential election of that year, Pedro Castillo—a humble schoolteacher and labour organizer—emerged victorious. Castillo represented the Free Peru Political Party, which describes itself as left-wing, socialist and anti-imperialist. His constituency came overwhelmingly from poor, marginalized sectors of the populace. Free Peru claims as its ancestors figures such as Karl Marx, Vladimir Lenin and Peruvian communist José Carlos Mariátegui. The party is deeply opposed to neoliberalism and explains that it seeks “to rescue the minimized, almost imperceptible and dying State from the subjugation of market dictatorship” (Peru Libre, 2020). The fact that Castillo was elected despite the concerted, vehement opposition of the most powerful forces in the country was (and is) deeply disturbing to the status quo. Indeed, from virtually his first day in office Peru’s new president found himself embattled by the conservative opposition. Once Castillo assumed the presidency (on 28 July 2021), it was as if all the doubts and fears that had previously haunted the elite flooded into the public sphere and were visible to one and all. Because Free Peru was such an ardent critic of neoliberalism, the rise of the party directly challenged the notion that neoliberalism could (or should) be the basis of a recovery. Furthermore, with Castillo in office, people felt less anxiety about expressing what had formerly been their private fears and doubts. They also felt less pressure to condemn everything related to the Shining Path and to celebrate everything related to the armed forces.

304 

D. NUGENT

In these tense conditions, a scandal soon unfolded. According to the conservative press, several of Castillo’s recently appointed cabinet ministers, and by implication the president himself, had alarming sympathies for terrorism. Most notable in this regard was the Prime Minister, Guido Bellido, who came under a dark cloud of suspicion. The conservative press found social media posts from several years prior in which Bellido seemed to endorse remarks made by Abimael Guzmán and José Carlos Mariátegui justifying violence to promote revolution (El Comercio 7 September 2021). The press also found social media posts in which Bellido had offered his “greatest homage” to a young Senderista leader named Edíth Lagos, who had been killed in 1982  in a shootout with the forces of order.8 When pressed to retract his remarks, Bellido refused to unequivocally condemn Lagos. Rather than labelling her a terrorist, he said she was first and foremost a Peruvian. It is true, Bellido explained, that she had chosen the wrong path, but she and many other Peruvians had confronted conditions in the country that were nothing short of disastrous. She and many others had settled on a particular course of action to attempt to redress these wrongs (El Comercio 2 August 2021). Bellido came under investigation for possible violation of the “Apology for Terrorism” law and was compelled to resign. In light of his remarks, however, it was difficult for conservative groups to avoid concluding that Sendero was far from dead. Indeed, its highly contagious uncanny seemed to have travelled to the highest echelons of government. It was equally difficult for conservative groups to avoid wondering how many Peruvians of humble origin—who had voted for Castillo in huge numbers—were similarly infected despite the decades that had passed since the end of the civil war. In these circumstances, the dangerous and pathological past—which the forces of order had been at such pains to keep at a distance—came thundering back to overtake the present. Much to the dismay of the authorities, the barrier between the present and the past proved to be as thin and permeable as they had always feared. The future, on the other hand, which had once seemed so close, now threatened to retreat to a great distance. So too did the conditions necessary for sustaining a healthy social order. With the resurgence of Peru’s virulent uncanny, the entire 8  Lagos was born to a wealthy family in the highland city of Ayacucho, a Sendero stronghold. She studied law at the Universidad de San Martín de Porres, a prestigious university in Lima, before dropping out to join the Shining Path.

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country seemed at risk of re-infection, and the present seemed on the verge of capitulating to the past. At the same time, Peru’s continued advance into an ever-more prosperous future appeared to have stalled, and the country’s hard-fought efforts at recovery were threatened with collapse. It was not at all clear that Peru had succeeded in extricating itself from its traumatic past.

References Benjamin, W. (1968). Theses on the Philosophy of History. In H. Arendt (Ed.), Illuminations. Harcourt, Brace & World. Bryant, R. (2014). History’s Remainders: On Time and Objects after Conflict in Cyprus. American Ethnologist, 41(4), 681–697. Drinot, P. (2009). For Whom the Eye Cries: Memory, Monumentality, and the Ontologies of Violence in Peru. Journal of Latin American Cultural Studies, 18(1), 15–32. Drinot, P. (2019). Contested Memories of the Peruvian Internal Armed Conflict. In D. S. Hillel & A. Vergara (Eds.), Politics after Violence: Legacies of the Shining Path Conflict in Peru. University of Texas Press. Feldman, J.  P. (2021). Memories Before the State: Postwar Peru and the Place of Memory, Tolerance and Social Inclusion. Rutgers University Press. Ferguson, J., & Gupta, A. (2008). Spatializing States: Toward an Ethnography of Neoliberal Governmentality. American Ethnologist, 29(4), 981–1002. Hibbett, A. (2017). La reciente polémica alrededor del Lugar de la Memoria. Disonancia: Portal de Debate y Crítica Social, 5 September. Ledgard, D., Hibbett, A., & de la Jara, B. (2018). Retos y estrategias para una política de memoria: El projecto Lugar de la Memoria, la Tolerancia y la Inclusión Social. Cuaderno de Inbestigación no. 7. Lima: Escuela de Gobierno y P0líticas Públicas de la Pontificia Universidad Católica del Perú. Martínez, T. E. (1996). Santa Evita. Trans. Helen Lane. Buenos Aires: Seix Barral. Milton, C. E. (2018). Conflicted Memory: Military Cultural Interventions and the Human Rights Era in Peru. University of Wisconsin Press. Milton, C. E. (Ed.). (2014). Art from a Fractured Past. Memory and Truth-Telling in Post-Shining Path Peru. Duke University Press. Montoya Rojas, R. (2021). Abimael Guzmán sigue muriendo, ¿hasta cuando? Servindi. Comuicación intercultural para un mundo más humano y diverso. https://www.ser vindi.org/21/09/2021/abimael-­g uzman-­s igue-­ muriendo-­hasta-­cuando. Pajuelo, R. (2021). Abimael Guzmán: dolorosas herencias de la violencia. Crítica y Debates. Instituto de Estudios Peruanos. Lima, Peru. 22 September.

306 

D. NUGENT

Pardo, I., & Prato, G.  B. (Eds.). (2016). Citizenship and the Legitimacy of Governance: Anthropology in the Mediterranean Region. Routledge. Peru Libre. (2020). Ideario y Programa. Servicios Gráficos y Publicidad Bryan. Rojas-Perez, I. (2008). Writing the Aftermath: Anthropology and ‘Post-Conflict. In D. Poole (Ed.), A Companion to Latin American Anthropology. Blackwell. Rojas-Perez, I. (2017). Mourning Remains. State Atrocity, Exhumations, and Governing the Disappeared in Peru’s Postwar Andes. Stanford University Press. Sodaro, A. (2018). Exhibiting Atrocity: Memorial Museums and the Politics of Past Violence. Rutgers University Press. Tanaka, M. (2021). Abimael Guzmán (1934-2021). Crítica y Debates. Instituto de Estudios Peruanos. Lima, Peru. 14, 21 September. Trouillot, M.-R. (1995). Silencing the Past: Power and the Production of History. Beacon. Uccelli, F. (2021). Cuando el pasado se hace presente. Crítica y Debates. Instituto de Estudios Peruanos. Lima, Peru. 20 July. Weber, M. (2009). In H. Heinrich Gerth & C. Wright Mills (Eds.), From Max Weber: Essays in Sociology. Routledge.

Newspapers El Comercio (Lima, Peru). La República (Lima, Peru).

Index1

A ABC News Broadcast, 166 Ablon, J., 224 Adams, C. F., 2 Adams, J., 2 Adamson, J., 225 Agamben, G., 5, 187, 264 AGENAS, 22 Alley, K. D., 138 Altekar, A. S., 132 Alternative medicine, 10, 98–100, 103–105, 105n7, 108, 109, 188, 200 See also Complementary therapies Amnesty International, 270, 272, 280 Anastasiou, D., 228 Appadurai, A., 136, 141 Apulia, 20, 23, 26, 26n8 See also Brindisi Arendt, H., 5, 48 Aristotle, 2

Armstrong, G., 13, 14, 37n21, 121n15, 269, 270 Arnold, J., 11, 49, 119, 248, 281 Authority, 3–6, 10, 13, 15, 16, 30, 47, 48, 49n8, 58, 66, 74, 78, 98, 106, 115, 116, 120, 123, 133, 136, 145, 196, 200, 201, 208, 209, 211–213, 248, 250, 252, 256, 264, 267, 268, 270, 278, 288, 290–302, 304 as opposed to authoritarianism, 145, 250 Aziende Sanitarie Locali, ASL (Healthcare Corporations), 21, 47, 49–55 B Bailey, F., 51 Baines, K., 214, 220 Balique, H., 78–81

 Note: Page numbers followed by ‘n’ refer to notes.

1

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 I. Pardo, G. Prato (eds.), The Legitimacy of Healthcare and Public Health, Palgrave Studies in Urban Anthropology, https://doi.org/10.1007/978-3-031-25592-2

307

308 

INDEX

Banca d’Italia, 49n8, 59, 60 Barbalet, J. M., 225 Barry, C. A., 108 Batakji, R., 259 Bauleo, L., 24 Beccaloni, E., 58 Beccarello, M., 57 Bechis, F., 49n10 Becker, G., 224 Becker, S. H., 230 Beezley, W. H., 212 Beletsky, L., 209 Beneduce, T., 50, 57, 58 Benjamin, W., 290 Bertaux, D., 230 Bevan, G., 30n15 Biehl, J., 124n21 Bilu, Y., 195 Biopolitics, 5, 185–204 Birrell, I., 5 Björklund Larsen, L., 46, 60 Blow, C., 5 Bocci, M., 64 Boffey, D., 64 Bogden, R., 172 Boucher, N., 208, 220 Bowers, B. J., 225 Brindisi, 23–26 Brindisi Report, 26 Bruno, A. L., 198 Bryant, R., 292 Burgess, E. W., 266 Bury, M., 225 C Cammet, M., 249 Canadian Institute for Health Information, 179 Casarões, G., 116 Castro, A., 5

Channa, Mitra S., 11, 49, 134, 138, 140, 141, 147, 169, 208, 209, 248 Charity Charitable Foundations - ente morale, 25 health charities; Breast Cancer Now, 34; League of Friends, 33; Macmillan Cancer Foundation, 34 See also Healthcare, fundraising; Healthcare, volunteer/s Charlier P., 116 Charmaz, K., 224 Charron, N., 48 Chatterjee, P., 131, 135, 138 Chiazzarande, 26 Chulov, M., 253, 254, 257, 258 Cicero, Marcus Tullius, 1, 1n1 Citizenship rights, 123 Complementary therapies, 12 See also Alternative medicine; Medical pluralism; Spiritual healing Conflict, 8, 12, 32, 46, 246, 290, 291, 297–300 See also Violence Confortini, C. C., 102 Consociational model, 247, 250 Constitution, see Costituzione della Repubblica Italiana NHS Constitution, 31 Corruption of the best, 55, 66 clientelism, 51 legal, 8, 45, 49, 55 moral/ethical, 9, 55, 66 Costituzione della Repubblica Italiana, 4, 9, 31, 48, 134, 152, 179 Coulibaly, A., 79–81 Coulibaly, S. O., 75–77 Covid-19 pandemic

 INDEX 

crisis, 11, 31, 39, 132, 155, 259, 281 as “indiscriminate” hitter, 48 and inequalities, 4, 5, 38 Long Covid/Long Haul Covid, 11, 151–153, 155–169 and structural weaknesses, 9, 21 Cross, J., 74 D Dardari. V., 62n25 Daszak, P., 5 Davis, K. C., 153 Dein, S., 190 Democracy authority, 3, 145 democratic contract, 10, 66, 268; breach of, 10, 66 responsibility, 3, 46 See also India, Indian democracy Department of Health and Social Care (DHSC), 31 Depoy, E., 227 Dew, K., 5 Di Biase, G., 56 Di Foggia, G., 57 Di Tella, T., 137 Diakité, B. D., 76, 77 Diarra, T., 10, 27n9, 49, 75–78, 178 Dinitz, S., 267 Disability impairment, 224, 225, 227, 228, 239 and the labour market, 223, 230–242 social obstacles, 13, 226 See also People with disabilities Dole, C., 121 Donovan, J., 225 Dorlach, T., 122

309

Douglas, M., 20, 102, 175, 178, 179 Drinot, P., 301 Duqueroy. V., 179 Duval, L., 224 E Ecks, S., 120 Edgerton, R. B., 224 Eich-Krohm, A., 100 El Comercio, 294n2, 304 Elias, N., 268 El-Jardali, F., 256 Epstein, S. G., 120, 120n12 Equality, 23, 135, 227, 238 Equity, 23 Ethics, 8, 19–41, 47, 106, 109, 117 shared values, 9, 20 See also Hippocratic Oath; Legitimacy; Responsibility Ethnography case-studies, 27 interviews, 20, 214 participant observation, 20, 214; as a long-term endeavour, 46 Euronews, 57 European Union (EU), 4, 7, 22n3, 29, 48, 49, 64, 65, 114, 253 Health Programme, 4 F Feldman, J. P., 255, 298, 301 Ferguson, J., 288 Field, C., 179 Folle, A., 58 Fondazione Gimbe, 47, 47n2 Foucault, M., 100, 101, 108, 188, 265 Frank, A., 224 Fraser, A., 270

310 

INDEX

Freedman, D., 177 Friedman, M., 190 Furedi, F., 5 G Gautret, P., 116 Geremicca, F., 56, 57 Germani, G., 138, 139 Gilson, F. S., 227 Giuffrida, A., 47n4, 49n10 Gleik, J., 172 Godoy, E., 207 Goffman, E., 224 Gorin, S., 180, 181 Gough, H. C., 267 Governance bad, 9, 45, 49, 66 consociational, 13, 247 failed, 56, 296 legitimacy of, 11, 115, 148 local level, 13, 247 regional, 23, 49; disparities, 21, 22n3, 23–27, 26n8, 30n15, 47–48 See also Misgovernance Grammenos, S., 229 Greece, 10, 12, 98–100, 103, 105, 223–242 Grens, K., 116n4 Gupta, A., 288 Gürsoy, K., 122 H Harris, R., 6 Harris, S., 226 Hartshorne, H., 266 Hathaway, S. R., 266 Havinghurst, R., 267 Healthcare bureaucratic and administrative procedures, 21; cumbersome, 21

cancer care, 97–109 as a commodity, 22, 48–56 community care; Complex Unities of Primary Care, 22; Integrated Care Systems, 35 critical care, 22 digitalization of, 39 efficiency, 8, 22, 37 fundraising, 33, 35, 37, 245 health migration, 24, 26, 49n8 as a governmental duty, 20, 46 inequalities, 4, 8, 13, 19–41, 47, 119, 210, 251, 259 institutions, 6, 7, 9, 10, 20, 73, 74, 77, 83–93, 121 legislation, 25, 27; emergency, 2, 7, 296 managerial criteria (injection of) in healthcare, 7 performance, 8, 10, 19, 21, 27, 75, 83, 93 personnel, 8, 26, 27, 32, 36, 38, 40, 76, 79, 86; ethics and responsibility, 19–41 practices, 8, 22, 49, 79, 181, 187, 202, 207 as a priority, 7, 8, 15; priority of as a rhetorical claim (see European Union (EU); United Nations (UN)) privatization of; cooperatives, 40; marketization, 20; private insurance, 175, 176, 181, 249; self-funded treatment, 40, 53–55; by stealth, 47, 47n3, 49 as a public service, 38, 40, 51, 56 regional, 8, 9, 21–23, 75 as a right, 4–6, 8, 11, 12, 20, 21, 48–56, 98n2, 121, 124, 171–182, 187; constitutional, 48, 181

 INDEX 

system, 19, 20, 22, 28, 29, 40, 100, 113–127, 153, 228; resilience, 19 universal, 8, 12, 29, 46, 93, 122, 154, 156, 166, 171–182 volunteer/s, 35 Heilman, S. C., 190 Heller, T., 226 Helou, J. P., 249, 254, 255 Hibbett, A., 300n7 Hippocratic Oath, 1, 6, 49 Hobart, A., 137 Hospitals foundations, 25, 27, 33, 36, 80, 140 trusts, 10, 56, 121, 158, 167 Hydroxychloroquine (HCQ), 11, 113–127 I Illich, I., 4, 37 Il Mattino, 56, 57n20 Il Sole 24Ore, 64n27 India, 3, 11, 131–139, 141, 142, 144, 145, 147, 169, 217, 248 Indian democracy, 11, 131 INEGI, 214 Information Commissioner’s Office, 280 International Urban Symposium (IUS), 3 Isik, I. B., 114n1 Israel, 12, 185–204, 245 ISTAT, 59, 60n24 Italy North, 23, 26, 26n8 South, 60 See also Brindisi; Naples; Tuscany J Jackson, G., 156, 163

311

K Kanté, B., 78–81, 79n3 Kapferer, B., 137 Karateke, H. T., 74 Kasnitz, D., 224 Kauffman, J. M., 228 Kayaalp, E., 114n1 Kayaalp Jurich, E., 10, 11, 49, 169 Keck, F., 5 Kent, 20, 29, 36, 39 Kerr, M., 252 Kim, H., 193 Kim, Ok-ju, 193 The King’s Fund, 35 Klawiter, M., 101 Knowles, M., 179 Koca, F., 114, 117, 123 Koenig, D., 10, 49, 88n9, 178, 200 Konaté, M. K., 78–80, 79n3 Kreier, R., 177 Krong, B., 102 Krugman, P., 64 Kvaraceus, W. C., 267 L Laclau, E., 135, 136, 138, 139 Lambert, H., 121 Lambert, M. J., 120n13 The Lancet, 19 La República, 294n2 La Repubblica Napoli, 56, 57n20 Lasco, G., 121 Lazar, I., 103 Lê, G., 75 Leach, E. R., 6 Leatherman, S., 177 Lebanon, 13, 245–259, 264 Ledgard, D., 300n7 Legislation, 5, 9, 20, 25, 27, 47, 47n3, 49, 49n7, 63, 65, 100, 154, 176 legitimacy of, 9, 20, 25 See also Legitimacy

312 

INDEX

Legitimacy of action/performance; in the medical sector, 59; in public health, 3, 6, 264–269, 272, 280 eroded, 10 of governance, 11, 115, 148 of the law, 2, 3 legitimate vs. legal, 5, 46, 115, 126, 134 as a process, 9, 20, 74–80, 91–92 See also Ethics; Legislation Lenzi, M., 62 Livingston, J., 99 Lochlann, J. S., 99 Locke, T., 2, 179 Logaras, D., 241 Lomnitz, C., 212 London, 121n15, 263, 269, 270, 272, 273, 275–277 Lupton, D., 125 Lutz, J. B., 225 Lyon, M. L., 225 M MacGregor, H. N., 74 Magalhães, D., 116 Magro, A., 64 Makridis, C. A., 167 Mali, 10, 27n9, 73–93, 178 Manantali, 10, 73–93 Mannheim, H., 266 Maraniello, C., 47n2 Mariko, M., 75, 76 Mark, Z., 190 Marmot, M., 38 Marshall, T. H., 46 Martínez, T. E., 295n3 Mathur, N., 133 Mautone, E., 50 May, M., 266 McCracken, G., 172

McKinley, M. D., 266 McLaughin, V., 177 McLoughlin, D., 187 Medical pluralism, 10, 97–109 See also Alternative medicine; Complementary therapies Merleau-Ponty, M., 172 Merose, H., 202 Mexico, 12, 180, 207–220 Miller, A., 7, 50 Mills, C. W., 172 Milton, C. E., 300n7 Ministero della Salute, 24 Misgovernance, 9, 10, 45–66 See also Governance, bad Mollica, M., 13, 119, 245, 247, 250, 251, 255, 264 Monbiot, G., 30 Moniz, C., 181 Montoya Rojas, R., 296, 297 Moore, M., 177, 181 Morens, D. M., 152 Mucchielli, L., 116 Mukherjee, S., 101, 178 N Nachshoni, C., 196 Naples, 9, 46, 48, 49n9, 50, 56, 58–61, 60n23, 65, 66, 188, 190 NapoliToday, 56 National Health Service (NHS), 9, 40, 47, 181, 210 NHS England, 29, 30n15, 31, 32 New Red Brigates (Nuove Brigate Rosse), 14 NHS England, 29, 30n15, 31, 32 Niezen, R., 217n3 Nugent, D., 14, 15 Nurses-nursing, 28 culture of, 28, 34, 36 practice of, 34–35, 37, 39

 INDEX 

See also Healthcare, community; Healthcare, personnel; Responsibility O OECD, 20, 21, 29, 32, 74, 122, 147, 148, 209 Oliver, M., 227 Olson, E., 12, 49, 76, 109, 207, 208, 210n1, 213, 281 P Pajuelo, R., 296n4 Panchetti, B., 255 Pappalardo, A., 50 Pardo, I., 3–7, 9–11, 14, 15, 20, 22, 23, 25, 30, 38, 45–49, 51, 55, 56n19, 57–60, 62, 74, 76, 97n1, 98, 104, 114, 115, 126, 127, 131, 132, 134–136, 145–148, 152, 157, 178, 179, 182, 187, 188, 190, 197, 200, 214, 224, 226–229, 242, 247, 248, 250, 264, 267, 268, 280, 281, 289 Partitocrazia (party-rule), 23 Patients, 6 as consumers, 10, 22, 98, 100 participation groups, 32, 32n17, 33 See also Healthcare, privatization of Paz, O, 212 Pearson, H, 120 People with disabilities, 13 See also Disability Perfecto, I, 208, 210 Persad, G, 178 Peru, 15, 285–305 Peru Libre, 303 Petryna, A., 121n16 Pettid, M. J., 194

313

Plato, 2 Pledger, C., 225 Political extremism as a danger to public health, 4 infectious, 14, 293, 295, 298–299, 304 See also Terrorism; Violence Prato, G. B., 3–6, 9–12, 15, 20, 21, 23, 25, 30, 36, 38, 39, 45–49, 49n7, 51, 54, 59, 60, 63, 66, 74, 76, 97n1, 98, 114, 115, 119, 127, 131, 132, 135, 136, 147, 148, 152, 157, 178, 179, 182, 190, 200, 214, 227, 229, 247, 250, 264, 267, 268, 281, 289 Public Broadcasting System, 166 Public health biosecurity, 4 and mismanagement of the urban environment, 15; badly maintained, 56, 66; hazard, 4, 9, 56–58 urban violence as an issue of, 263–265, 268–281 See also Legitimacy; Rubbish/waste Pylypa, J.m, 108 R Rabbis, 189, 191, 192, 194–197, 200, 201 Rama, S., 133 Reckless, W. C., 267 Resettlement involuntary, 74, 82, 83, 86–88, 87n8, 92 Responsibility in government/in the exercise of power, 3, 5, 11, 23, 46, 153, 188, 200 in healthcare, 8, 16, 22, 27, 32, 179, 210 managing public health, 245–259

314 

INDEX

Ricolfi, L, 59 Rida, N., 255 Riemann, M., 264, 265, 269 Rogers, T., 11, 12 Rojas-Perez, I., 302 Rondinelli, C., 59 Rosbrook-Thompson, J., 13, 14, 37n21, 121n15, 127, 268–270 Rosenberg, M., 267 Ross, A. I., 99–101 Rubbish/waste mismanagement of, 7, 57 source of disease, 7, 57 as a source of pollution, 4, 7 trade/sale of, 9, 58 Rubio, J. L., 178 Rutherford, D., 48 S Salento, see Brindisi Salus populi, 2 Sarfati, L., 12, 49, 76, 109, 192, 195, 197, 198 Scarpitti F. R., 267 Scheper-Hughes, N., 224 Schütze, F., 230 Scott, J. C., 148 Sectarianism political, 256 religious, 247 See also Urban violence Sendero Luminoso, 14, 15, 290, 294, 300, 301 Shaffer, E. R., 176 Shakespeare, T., 227 Shamans, 185, 193 Shatkin, G., 136, 138 Shuttleworth, R., 224 Sodaro, A., 300n7 Sottogoverno (hidden-government), 23 South Korea, 12, 122, 185–204

Spinelli, L., 37 Spinney, L., 153, 157 Spiritual healing, 12, 185–204 See also Complementary therapies Spradley, J., 172 Spyridakis, M., 13, 153, 223–242 Stanford, P., 38 Stott D. H., 267 Strathern, M., 120 Sulik, G. A., 100 SVIMEZ, 48, 49n8 T Talleres Verdes (Green workshops), 12, 13, 208–211, 213, 214, 216, 218, 220 Tanaka, M., 296n4 Tang, W., 117 Tate, G. D., 225 Taylor, S., 137, 172 Tennessee, 157, 161, 168, 175 Terrorism, 296, 297, 304 Thapar, R., 132–134 Thomas, C., 225 Ticket prescription charges, 8, 21–23, 21n1, 22n3, 26, 28 Tinta, S., 76, 77 Torres-Mazuera, G., 210n1 Trouillot, M-R, 292 Trust, 3, 5, 10, 11, 15, 23, 48, 50, 54, 56, 66, 103, 108, 121, 125, 127, 144, 148, 156, 158, 167, 186, 202, 239, 247–249, 264 as a casualty of bad governance, 3, 5, 10, 11, 15, 66 See also Governance, bad; Governance, failed Tsiolis, G., 230 Tulloch, J, 125 Tunstall, L, 154

 INDEX 

Turkey, 11, 113–127 Tuscany, 3, 20, 24, 26n8, 27, 98n2 U Uccelli, F., 296n4 United Kingdom (UK), 8, 12–14, 20, 29–33, 32n17, 38, 40, 264, 265, 281 See also Kent; NHS England United Nations (UN), 7, 176, 219, 228 sustainable development goals, 4, 219 United Nations World Health Organization, 176 United States of America, 2, 3, 116, 121, 174, 177, 210, 211, 253, 255, 281 USAID (US Agency for International Development), 83, 84, 86 V Vakkai, R., 178 Van der Veer, P., 132 Van Deusen, K., 188 Varelaki, F., 10–12 Vía Campesina, 209, 210 Vico, G., 46 Vidyarthi, S., 136, 138 Violence aftermath of, 15 recovery from, 264, 277–279

315

relapse into terrorism, 15, 286–288, 291, 303; Red Brigades (see Sendero Luminoso) urban, 14, 37n21, 263–281 See also Political extremism; Public health W Wacquant, L., 269 Walla, 201 Weber, M., 213, 250, 289 Wengraf, T., 230 Wenner, M., 74 Whyte, W.F., 48 Wilkins, L., 266 Williams, J. S., 225 Winfield, N., 58 Woolhandler, S., 177 World Health Organization (WHO), 37, 65n29, 113, 116–118, 121, 125, 156, 228 Health Act 21, 37 Wu, C., 167 Y Yang, M., 186, 188 Z Zanichelli, F., 59 Zarger, R. K., 220 Ziglio, E., 218 Zylberman, P., 5