The Vulnerability of the Human World: Well-being, Health, Technology and the Environment 9783031418235, 9783031418242, 3031418239

Table of contents :
Contents
About the Contributors
Chapter 1: The Vulnerability of the Human World: Introduction
References
Chapter 2: The Limits and Dangers of Risk-Benefit Analysis: From the Refugee Crisis to the Coronavirus Pandemic
2.1 Whose New Normal?
2.2 The Dangers of Risk-Benefit Calculations
2.3 Justice Between Ethics and Politics
2.4 The “Lessor of Evils”
2.5 Response Ethics
2.6 Covid: “The Great Equalizer”?
References
Chapter 3: From Blame Narrative to Just Narrative: A Hermeneutical Perspective on Pandemics
3.1 The Blame Narrative: Three Kinds of Vulnerability
3.2 Hermeneutics and Pandemics: Finding a Just Narrative
3.3 Pitfalls
3.3.1 Easy, Does It?
3.3.2 Behind Our Backs
3.3.3 Sticking to the Rules
3.4 Discussion and Conclusions
References
Chapter 4: The Ontological and Ethical Value of Vulnerability: A Reflection Between Phenomenology and Psychopathology
4.1 What Is Vulnerability? The Temporal and Bodily Structure of the Subject
4.2 Vulnerability as Liminality. Husserl and the Grenzprobleme
4.3 Jaspers and “The Infinite Abyss of Reality”
4.4 Taking Care of Vulnerability
4.5 Conclusion
References
Chapter 5: Why Does Mental Illness Exist? Reflections on Human Vulnerability
5.1 Introduction
5.2 Anthropological Vulnerability
5.2.1 Lack of Instinct and Openness of Development
5.2.2 Angst as “Dizziness of Freedom”
5.2.3 Eccentric Positionality
5.2.4 Subject and Object Body
5.3 Existential Vulnerability
5.4 Conclusion
References
Chapter 6: Well-Being, Health, and Human Embodiment: The Familial Lifeworld
6.1 Introduction
6.2 The Family as a Central Phenomenological Category
6.3 Human Well-Being and Intergenerational Altruism
6.4 Marriage, the Creation of a New Family, and Well-Being
6.5 Familial Well-Being and Child Rearing
6.6 Concluding Reflections on the Family and Its Authority
References
Chapter 7: The Dissolution of the Pregnant City: A Philosophical Account of Early Pregnancy Loss and Enigmatic Grief
7.1 Introduction
7.2 Scientific Accounts of Miscarriage: Thinking through the Definition, Etiology and Prevalence of Miscarriage
7.3 Grief, Relationality and Ambivalence: Rethinking Loss with Freud, Boss and Butler
7.4 The Dissolution of the Pregnant City: Miscarriage and Pre-individual Relationality
7.5 Concluding Notes
References
Chapter 8: K(in)Vulnerability: Indigenous and Anthropocene Perspectives on Kin and Vulnerability
8.1 Introduction
8.2 Land and Community
8.3 Pain and Suffering
8.4 Make Kin
8.5 Sitting with Rocks
8.6 Conclusion
References
Chapter 9: Vulnerability, Wellbeing and Health
9.1 Introduction
9.2 What Is Vulnerability?
9.3 Vulnerability: An Essential Aspect of Being Human
9.4 Situational Vulnerability: An Intersectional Approach
9.5 Ontological Resilience and Wellbeing
9.6 Situational Resilience and Wellbeing
9.7 Conclusion
References
Chapter 10: Vulnerability, Interdependence and the Care for the Living
10.1 Introduction
10.2 From Self-Mastery to Exploitation: The Insular Autonomy
10.3 Plasticity and the Ecological Paradigm of Subjectivity
10.4 Vulnerability & Interdependence: A Phenomenological and Relational Paradigm for the Living World
10.5 Immunity and Responsiveness: A Critique of the Anthropocentric Perspective in Biology
10.6 From Responsiveness to Relational Dignity
10.7 What Makes Us Human? The Responsibility of the Living Person
References
Chapter 11: From Digital Medicine to Embodied Care
11.1 The Rise of Digital Medicine: A Challenge in the Name of Health?
11.2 The Neurocentric Paradigm
11.3 The Phenomenological Turn
11.4 Health as a Moral Enterprise
11.5 Embodied Care
References
Websites
Chapter 12: Aiming at Well-Being with Brain Implants: Any Risk of Implanting Unprecedented Vulnerabilities?
12.1 Introduction: When Well-Being Leads to Vulnerabilities
12.2 The Capability Approach: General Tenets
12.3 The Capability Approach and BCI Related Well-Being
12.4 Transformative Experience
12.5 Empowerment and Coping: Achieving the Desired State of Well-Being
12.6 The Missing Resources
12.7 Narrative Based Healthcare Services: The Enabling Factor
References
Chapter 13: Phenomenology of Emotions and Algorithms in Cases of Early Rehospitalizations
13.1 Introduction
13.2 The Disembodied Technology and Its Ethical Opacity
13.3 The Case
13.4 The Inherited Bias
13.5 What Can Phenomenology Do in This Case
13.6 Presuppositionless Phenomenology
13.7 Phenomenological Ethics
13.8 Phenomenological Methods in Psychology and Data Collecting
13.9 Conclusion
References

Citation preview

Philosophy and Medicine

P&M148

Elodie Boublil Susi Ferrarello   Editors

The Vulnerability of the Human World Well-being, Health, Technology and the Environment

Philosophy and Medicine Founding Editors H. Tristram Engelhardt Jr. Stuart F. Spicker

Volume 148

Series Editors Søren Holm, The University of Manchester, Manchester, UK Lisa M. Rasmussen, UNC Charlotte, Charlotte, NC, USA Editorial Board Members George Agich, Austin, TX, USA Bob Baker, Union College, Schenectady, NY, USA Jeffrey Bishop, Saint Louis University, St. Louis, USA Ana Borovecki, University of Zagreb, Zagreb, Croatia Ruiping Fan, City University of Hong Kong, Kowloon, Hong Kong Volnei Garrafa, International Center for Bioethics and Humanities,  University of Brasília, Brasília, Brazil D. Micah Hester, University of Arkansas for Medical Sciences,  Little Rock, AR, USA Bjørn Hofmann, Norwegian University of Science and Technology,  Gjøvik, Norway Ana Iltis, Wake Forest University, Winston-Salem, NC, USA John Lantos, Childrens’ Mercy, Kansas City, MO, USA Chris Tollefsen, University of South Carolina, Columbia, USA Dr Teck Chuan Voo, Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore

The Philosophy and Medicine series is dedicated to publishing monographs and collections of essays that contribute importantly to scholarship in bioethics and the philosophy of medicine. The series addresses the full scope of issues in bioethics and philosophy of medicine, from euthanasia to justice and solidarity in health care, and from the concept of disease to the phenomenology of illness. The Philosophy and Medicine series places the scholarship of bioethics within studies of basic problems in the epistemology, ethics, and metaphysics of medicine. The series seeks to publish the best of philosophical work from around the world and from all philosophical traditions directed to health care and the biomedical sciences. Since its appearance in 1975, the series has created an intellectual and scholarly focal point that frames the field of the philosophy of medicine and bioethics. From its inception, the series has recognized the breadth of philosophical concerns made salient by the biomedical sciences and the health care professions. With over one hundred and twenty five volumes in print, no other series offers as substantial and significant a resource for philosophical scholarship regarding issues raised by medicine and the biomedical sciences.

Elodie Boublil  •  Susi Ferrarello Editors

The Vulnerability of the Human World Well-being, Health, Technology and the Environment

Editors Elodie Boublil Faculty of Health/Faculty of Humanities (LIS EA 4395) UPEC (PARIS XII) Créteil, France

Susi Ferrarello Department of Philosophy California State University, East Bay Hayward, CA, USA

ISSN 0376-7418     ISSN 2215-0080 (electronic) Philosophy and Medicine ISBN 978-3-031-41823-5    ISBN 978-3-031-41824-2 (eBook) https://doi.org/10.1007/978-3-031-41824-2 © The Editor(s) (if applicable) and The Author(s), under exclusive license 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. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland Paper in this product is recyclable.

Contents

1

 The Vulnerability of the Human World: Introduction ������������������������    1 Elodie Boublil and Susi Ferrarello

2

The Limits and Dangers of Risk-Benefit Analysis: From the Refugee Crisis to the Coronavirus Pandemic ����������������������   13 Kelly Oliver

3

From Blame Narrative to Just Narrative: A Hermeneutical Perspective on Pandemics ����������������������������������������   29 Geoffrey Dierckxsens

4

The Ontological and Ethical Value of Vulnerability: A Reflection Between Phenomenology and Psychopathology ������������   43 Valeria Bizzari

5

Why Does Mental Illness Exist? Reflections on Human Vulnerability������������������������������������������������������   57 Thomas Fuchs

6

Well-Being, Health, and Human Embodiment: The Familial Lifeworld����������������������������������������������������������������������������   73 Mark J. Cherry

7

The Dissolution of the Pregnant City: A Philosophical Account of Early Pregnancy Loss and Enigmatic Grief����������������������   91 Marjolein Oele

8

K(in)Vulnerability: Indigenous and Anthropocene Perspectives on Kin and Vulnerability ��������������������������������������������������  111 Gerard Kuperus

9

Vulnerability, Wellbeing and Health������������������������������������������������������  123 Roxana Baiasu

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Contents

10 Vulnerability,  Interdependence and the Care for the Living ��������������  143 Elodie Boublil 11 From  Digital Medicine to Embodied Care��������������������������������������������  159 Francesca Brencio 12 Aiming  at Well-Being with Brain Implants: Any Risk of Implanting Unprecedented Vulnerabilities?��������������������  181 Tomislav Furlanis and Frederic Gilbert 13 Phenomenology  of Emotions and Algorithms in Cases of Early Rehospitalizations������������������������������������������������������  199 Susi Ferrarello

About the Contributors

Roxana Baiasu is an Assistant Professor at the University of Birmingham, Visiting Lecturer at Stanford University Centre in Oxford, and Associate Member of the Philosophy Faculty at the University of Oxford. Prior to this, she was a lecturer at the Universities of Vienna, Birmingham, and Leeds; a Leverhulme Fellow at Sussex University; and Royal Institute of Philosophy Fellow in Manchester. She is Convener of the Oxford Forum, which she runs in consultation with Professor Stephen Mulhall and Dr Stephanie Solywoda. Her current research interests are in the areas of philosophy of mental health, phenomenology, bioethics, social epistemology, and feminist philosophy and include issues related to mental health, illness, vulnerability, healthcare justice, and wellbeing. She has written articles on these topics as well as in the wider areas of phenomenology and existentialism, as well as feminist philosophy. She edited (with G.  Bird and A.W.  Moore) Contemporary Kantian Metaphysics Today: New Essays on Time and Space (Palgrave Macmillan, 2012) and published in, among others, The Southern Journal of Philosophy, IJPS, Research in Phenomenology, and Sophia. Her recent publications include “Contextualising Mental Ill Health: Interdisciplinary Contributions to a New Model for Tackling Social Differences and Inequalities in Mental Healthcare” (Co-author) in Philosophical Psychology, eds. Matthew Broome, L. Spencer, and G. Stanghellini (forthcoming); “The Lived Experience of Lockdown, Illness, Power and Epistemic Injustices” in Time for Debate: Perspectives on Lockdowns from the Humanities and Social Science, Yossi Nehushtan (ed.), Routledge, 2022; “Phenomenology of Illness, Resilience and Wellbeing” in Phenomenology of Bioethics, ed. Susi Ferrarello, Springer, 2021; and “Vulnerability and Resilience’’ in Love and Vulnerability, Pelagia Goulimari (ed.), Routledge, 2021.  

Valeria Bizzari currently works at the Husserl Archives of the KU in Leuven. Her research interests include phenomenology, philosophy of emotions, and phenomenological psychopathology. Thanks to DAAD and Thyssen fellowships, from February 2018 to September 2020, she worked at the Clinic for General Psychiatry, Universität Heidelberg, under the supervision of Professor Thomas Fuchs.  

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About the Contributors

She spent visiting research periods at the Center for Subjectivity Research in Copenhagen, the Oxford Empathy Programme at the University of Oxford, and the Departments of Philosophy at the University of Wien and at the University Vita-Salute San Raffaele, Milan. Elodie Boublil has a PhD in philosophy from McGill University, an MA in philosophy from Sorbonne University (Paris I), and an MA in political science and international relations from Sciences Po Paris. After her PhD, she received a Marie Sklodowska-Curie Fellowship from the European Commission (CNRS, 2015–2017) and the Alexander von Humboldt Fellowship (University of Cologne, 2018–2020). She is now Associate Professor at the University of Paris XII (UPEC) and has published books and papers on phenomenology, ethics, philosophy of health, vulnerability, and empathy with international journals and publishing houses such as Continental Philosophy Review, Springer, Indiana University Press, SUNY Press, and Rowman and Littlefield. She has also published Rethinking Interiority: Phenomenological Approaches (SUNY Press, 2023) co-edited with Antonio Calcagno; Reframing 20th Century French Philosophy (ed.) (Rowman & Littlefield, 2023); and Vulnérabilité et Empathie: Approches Phénoménologiques (Hermann, 2018).  

Francesca Brencio is Associate Researcher in Philosophy at the Research Group HUM018: Filosofía Aplicada: Sujeto, Sufrimiento, Sociedad, at the University of Seville (Spain). She leads the Pheno-Lab, A Theoretical Laboratory on Philosophy and Mental Health. She is also member of The Phenomenology and Mental Health Network at the University of Oxford (UK) and also Executive Committee Member of The Royal College of Psychiatrists – Special Interest Group in Philosophy. Since January 2022, she has been a member of the Philosophy of Psychiatry Educators Network as part of the International Network for Philosophy and Psychiatry (INPP). Among many publications in international journals of philosophy and psychiatry, she has authored and edited the following books: F.  Brencio (2023), (ed.) Phenomenology, Neuroscience and Clinical Practice: Transdisciplinary Experiences, Springer (forthcoming) and S.  Ferrarello, F.  Brencio, V.  Bizzari, M. Englander (2023), “Phenomenological psychopathology: Who, what and how? An analysis of key figures, advancements, and challenges”, Special Issue of Frontiers in Psychology (forthcoming). She is among the contributors of The Oxford Handbook of Phenomenological Psychopathology (Oxford University Press, Oxford 2019), Storia della Fenomenologia Clinica (UTET, Torino 2020), and APA Handbook of Humanistic and Existential Psychology (American Philosophical Association Press, forthcoming). She also works as APPA Certified Philosophical Counsellor.  

Mark  J.  Cherry is the Dr. Patricia A.  Hayes Professor in Applied Ethics and Professor of Philosophy at St. Edward’s University, Austin, Texas. He earned his undergraduate degree in philosophy from the University of Houston and his  

About the Contributors

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doctorate degree in philosophy from Rice University in Houston, Texas. His research encompasses ethics and bioethics, together with social and political philosophy. He is the author of Kidney for Sale by Owner: Human Organs, Transplantation, and the Market (Georgetown University Press, 2005/2015); Sex, Family, and the Culture Wars (Routledge, 2016); Weak Bioethics (University of Notre Dame Press, 2024), in addition to numerous articles, book chapters, and other publications. He is Editor of The Journal of Medicine and Philosophy (Oxford University Press), Senior Editor of Christian Bioethics (Oxford University Press), and Editor-in-Chief of HealthCare Ethics Committee Forum (Springer). He is also Co-editor of the book series The Annals of Bioethics (Routledge) and Editor of the book series Philosophical Studies in Contemporary Culture (Springer). Geoffrey  Dierckxsens (Ph.D.) is head of the Interdisciplinary Research Lab for Bioethics (IRLaB) at the Department of Applied Ethics and Philosophy in the Institute of Philosophy of the Czech Academy of Sciences (CAS) in Prague. He is deputy head of the same department and president of the Society for Ricoeur Studies. He obtained his Ph.D. in 2015 at the University of Antwerp (Belgium) and worked as an associate researcher at the École des Hautes Études en Sciences Sociales (EHESS) in Paris. He has published several articles and books with international journals and publishing houses, such as Topoi, Philosophy Today, The Journal for Medical Ethics, Brill, Springer, and Rowman and Littlefield.  

Susi Ferrarello has a Ph.D. in Philosophy from the Sorbonne in Paris and an MA in Human Rights and Political Science from the University of Bologna. She has held professorships at la Sapienza Universitu, Luzern University in Switzerland, Sapienza University, and the Florence University of the Arts. Currently, she is an associate professor at California State University, East Bay. She writes for Psychology Today. Among her publications, the most recent are “The Ethics of Love” (Routledge 2023), “The Origin of Bioethics and Human Emotions” (Routledge 2022), and “Husserl’s ethics and practical intentionality” (Bloomsbury 2015).  

Thomas Fuchs, MD, PhD, is Karl Jaspers Professor of Philosophy and Psychiatry at Heidelberg University, Germany. His main areas of research include phenomenological philosophy and psychopathology, embodied and enactive cognitive science, and interactive concepts of social cognition. His clinical work focuses on the psychopathology and psychotherapy of affective and schizophrenic psychoses. Professor Fuchs has authored over 350 journal articles, book chapters, and several books. He is editor-in-chief of Psychopathology and president of the German Society of Phenomenological Anthropology and Psychopathology (DGAP). Recent publications include Ecology of the Brain: The Phenomenology and Biology of the Embodied Mind (Oxford University Press, 2018) and In Defense of the Human Being: Foundational Questions of an Embodied Anthropology (Oxford University Press, 2021).  

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About the Contributors

Tomislav (Tom) Furlanis is a narrative shaper of business and social practice, a game designer, and an independent researcher in ethical human-AI symbiosis. As a narrative shaper, Tom Furlanis scaffolds narrative techniques and approaches for individuals and communities to embrace personal autonomy and mastery, and selfauthor authentic and meaningful lives that foster open-­ended growth. As a narrative and game designer, he specializes in the delivery of high-impact storytelling, roleplaying, and cooperative board games in both educational and commercial settings. Tom’s constant research focus lies in the conceptual engineering and ethical analysis of symbiotic human-AI systems enhancing human capabilities, in particular human morality.  

Frederic Gilbert is an associate professor in Ethics and Philosophy, concomitantly Head of Discipline for Philosophy at the University of Tasmania. He is the founder of EthicsLab. Dr Gilbert’s pioneering research focuses on conducting a comprehensive, cross-disciplinary exploration of the ethical, philosophical, and policy considerations arising from the advancement of innovative therapeutic and non-therapeutic neurotechnologies. With a strong publication record of over 90 works, Dr Gilbert’s impact extends beyond philosophy to influential scientific and medical journals like The Lancet, Nature, The Lancet Neurology, Nature Biotechnology, and Cell Stem Cell. His work has garnered attention in mainstream media outlets such as The New Yorker, The New York Times, MIT Technological Review, SBS Insight, ABC Radio, El Mundo, New Scientist, The Daily Beast, WIRE, Salon, Sydney Morning Herald, and The World Economic Forum blogs. This broad recognition underscores his significant interdisciplinary contributions to academia.  

Gerard Kuperus is researcher on integral ecology at Radboud University and professor in philosophy at the University of San Francisco. His research focuses on Environmental Philosophy from a continental and comparative perspective. He is the author of Ecopolitics: Redefining the Polis (SUNY 2023), co-editor (with Josh Hayes and Brian Treanor) of Philosophy in the American West (Routledge 2020), co-editor (with Marjolein Oele) of Ontologies of Nature (Springer 2017), and author of Ecopolitical Homelessness (Routledge, 2016). He has published numerous articles, among other things, on the philosophy of nature, animal rights, Zen Buddhism, and the history of philosophy.  

Marjolein Oele is Professor of Philosophy at the University of San Francisco and was recently appointed as Professor of Philosophy of the Humanities at Radboud University. She was trained as an MD at the Free University of Amsterdam. She has a master’s degree in philosophy from the University of Amsterdam and received her PhD in philosophy in 2007 from Loyola University Chicago. Her primary research interests are in twentieth-century and contemporary European philosophy, in ancient philosophy (mainly Aristotle), and in environmental philosophy. She is the author of the monograph E-Co-Affectivity: Exploring Pathos at Life's Material Interfaces  

About the Contributors

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(SUNY: 2020), co-editor of the edited volume Ontologies of Nature (Springer, 2017), and the author of numerous articles and book chapters that intertwine topics and figures in continental philosophy and environmental philosophy with Aristotle’s philosophy. She is currently working on a new book manuscript, entitled Elemental Loss. Kelly  Oliver recently retired from Vanderbilt University, where she was Distinguished Professor of Philosophy. She is the author of 16 scholarly books, including Response Ethics (Rowman & Littlefield, 2018), Carceral Humanitarianism (Minnesota UP, 2017), Earth and World, Philosophy After the Apollo Missions (Columbia UP, 2015), and Animal Lessons, How They Teach Us to Be Human (Columbia UP, 2009); the editor of another 13 books, including her most recent co-edited volume Gaslighting (forthcoming); and the author of over 100 scholarly articles on a variety of topics including refugee detention, capital punishment, animal ethics, sexual violence, images of women and war, psychoanalysis, and film. Her work has been translated into eight languages. She has been interviewed on ABC news, appeared on CSPAN Books, and published in The New York Times and Los Angeles Times, among other appearances and publications in popular media. Kelly is also the bestselling author of three award-winning mystery series: The Jessica James Mysteries (contemporary suspense), The Fiona Figg Mysteries (historical cozy), and The Pet Detective Mysteries (middle grade).  

Chapter 1

The Vulnerability of the Human World: Introduction Elodie Boublil and Susi Ferrarello

The vulnerability of the human world is an edited book that collects papers reflecting on the problem of well-being, health, and vulnerability in our current society. The ‘human world’ to which we refer points to the anthropological, environmental, and ecological issues in relation to health and well-being that we propose to discuss. It addresses the need for a critical anthropological concept that overcomes the biases of modern anthropocentrism while addressing the specific responsibility of humans in contemporary world crisis. We do not try to give a final definition for what vulnerability is, but we problematize the notion of well-being as a standard of non-­ vulnerability that is often imposed on human beings; often well-being becomes a measure within which human beings should fit to not be vulnerable. Consequently, well-being has been implicitly defined as the opposite of vulnerability – especially when vulnerability is conceived as a risk or a threat to oneself or the community, rather than a potential source of growth and transformation. For this reason, we believe that well-being is more the title of a problem rather than its solution. This paradigm initiates, indeed, a “positive” conception of health that aims to push the boundaries of human finitude such as suffering, illness and the recognition of mortality. Usually, we assume that well-being is the final goal of our choices and the gist of a decent life, but we spend more time striving for well-being than asking ourselves what being well means for us, as individuals and societies. This paradox may generate emotional frustration which often worsens our condition rather than helps it reach its optimum. Moreover, it may generate and increase inequalities between

E. Boublil (*) Faculty of Health/Faculty of Humanities (LIS EA 4395), UPEC (PARIS XII), Créteil, France e-mail: [email protected] S. Ferrarello Department of Philosophy, California State University, East Bay, Hayward, CA, USA © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 E. Boublil, S. Ferrarello (eds.), The Vulnerability of the Human World, Philosophy and Medicine 148, https://doi.org/10.1007/978-3-031-41824-2_1

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E. Boublil and S. Ferrarello

people and countries who may suffer from the discrepancies in their access to healthcare or vaccination. Therefore, it also raises questions about collective justice and interdependence. Indeed, the concept of well-being seems to block a critical and epistemological appraisal of the concept of “health,” conflating thereby the impression of being “well,” which is normed by sociological, cultural and moral standards with the lived reality of what it means to be healthy – which itself needs to be questioned in light of the scientific paradigms that built human biology and environmental approaches over the past decades. The World Health Organization’s definition of well-being in 1947 was shaped on utilitarian principles, promoting the concept of “positive health,” and it did set the standard for 70 years of biomedical research and the implementation of contemporary paradigms in bioethics, as well as their naturalistic counterparts (Boorse, 1977). Indeed, according to WHO, health is a “state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” Conversely, according to Boorse, being healthy is not an individual way of relating to oneself, to the world and others, but a standard that would be universally defined by statistical norms. The essays collected here will attempt to challenge both views by exploring the notion of vulnerability as a personal  – and not only individual  – quality that human beings can accept and live with. On the one hand, the definition conveyed by WHO sees itself as “holistic” but the completeness it aims to reach is anthropocentric, and is itself a social and ideological construct. It responds, in fact, to a quest for individual high performance and enhancement, paradoxically undermined by the living conditions people are put in under a competitive rather than collaborative social and economic framework. Thereby, it replaces the notion of health by the notion of well-being, which is culturally and sociologically situated, and it may contribute to introduce more inequalities. On the other hand, the naturalistic paradigm relies on a concept of nature that is not critically assessed. It aims to provide objective, universal, and statistical norms to define health without taking into consideration individuation processes and the ecological and personal circumstances that impact on our well-being and shape our understanding of health. In fact, the Covid-19 pandemic has shown dramatically the social prevalence of such a definition and its limits. The porosity of the biological frontiers among mammals has shown the vulnerability of the human world before a virus whose conditions of emergence have been fostered by human activities (mass travel, deforestation etc.). Therefore, it seems urgent to think anew the way we understand and define health and well-being in light of a critical examination of our ways of life, our social interactions and our relations to the environment that include a revaluation of the concepts of nature and subjectivity we refer to. Therefore, this volume proposes a holistic and phenomenological approach to health and well-being that investigates the qualitative and relational aspect of being in the world that seems to have been left aside by previous framework, including the “One health approach1”.  The “One Health” concept first appears in 2004 and refers to: (1) an approach to human health in relation to animal health; (2) an approach to human health in relation to plant health (e.g., the consequences of deforestation on human habitats) (3) an approach to human health in relation to 1

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Once promoted by Greek philosophers, such as Aristotle, who challenged the meaning of ευδαιμονία, we would like to reopen the debate on the nature of human well-­ being and the ethical appraisal of human vulnerability considering this global, ecological, and systemic characterization of the relations between health and the living. For this reason, we invited contributors to write their paper by focusing mostly on individual well-being and vulnerability, and on societal vulnerability and environmental relations. What do we mean by personal, interpersonal, and societal well-being? How much should we be responsible for defining and maintaining a good quality of life? We believe that well-being is a multifaceted notion that includes not only our reason but our emotional maturity, too. Dismissing emotions as nothing more than a nuisance to our rationality has made many of our rational choices inhuman. We have created a society that does not fit humans: our cities have become a place to host lonelier and lonelier people, our doctors are getting emotionally sicker, our environment has been exploited in a mindless, and often heartless, way. It is no surprise that emotional disorders are becoming a growing concern, with one of more troubling symptoms being the increasing suicide rates among young adults. To make our lives better we need to make our lives fit for living beings and cleanse ourselves from all those biases that reduce human beings to machines, spirits disconnected from their bodies, islands far from each other. The continuity of life, and its innumerable ramifications, is a fact that needs to be observed, respected, and considered when making decisions conducive to a good life. Hence, in this volume, we would like to invite reflections on how to gain responsibility on our emotional well-being and addresses the following questions: What are the boundaries between physical and mental well-being? How can we attain a more sustainable well-being? What kind of collective responsibility can we put in practice to help those left behind because of traumatic events or poor life conditions? What ontological, political, and ethical lessons can we learn from the social distancing imposed on humanity by the pandemic circumstances? In Chap. 2, titled “The Limits and Dangers of Risk-Benefit Analysis: From the Refugee Crisis to the Coronavirus Pandemic,” Kelly Oliver discusses Global Health and the Collateral Damage Utilitarianism in the context of the Covid-19 pandemic. When faced with the crisis of overwhelmed hospitals worldwide, the instinct of the medical establishment was triage, traditionally associated with wartime assessments of who should be treated, who should get scarce resources, and who is most likely to live. This type of medical triage—most recently who will get ventilators and oxygen—is a form of utilitarianism common to medicine. Yet, as an ethical ecosystems (4) a holistic and transdisciplinary concept. In 2021, the WHO and other international organizations (FAO; OIE; UNEP) agreed on the following definition: “One Health is an integrated, unifying approach that aims to sustainably balance and optimize the health of people, animals, and ecosystems. It recognizes the health of humans, domestic and wild animals, plants, and the wider environment (including ecosystems) are closely linked and inter-dependent. The approach mobilizes multiple sectors, disciplines, and communities at varying levels of society to work together to foster well-being and tackle threats to health and ecosystems, while addressing the collective need for clean water, energy and air, safe and nutritious food, taking action on climate change, and contributing to sustainable development.”

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principle medical triage risks the worst. Designed to avoid the worst violence (traditionally equated with genocide) by embracing the lesser of the evils, the utilitarian cost-benefit model causes the worst violence. The calculus itself risks turning human life, or all life, into exchangeable units. This economy, in which human life becomes fungible, operates according to a genocidal logic in which the lives of some people with pre-existing conditions, or elderly people have become disposable. Indeed, statistical proportional analysis of collateral damage is part and parcel of genocidal logic defined as a view of human life (or nonhuman life) that leads to the practice of making one subset of that population fungible or disposable. The recent medical crisis caused by the pandemic, and the deployment of utilitarian logics of triage, call on us to develop a better and more ethical approach to the distribution of health care. In this essay, the author offers a deep critique of utilitarian approaches that risk the slippery slope of collateral damage. The author proposes an alternative based on what she calls response ethics. As Geoffrey Dierckxsens remarks in Chap. 3, scholars have found recently that one of the major issues of a pandemic – understood as a large outbreak of a disease over multiple countries or worldwide – is that it leads to a discrimination of culturally vulnerable groups (Dry & Leach, 2010; Kapiriri & Ross, 2020). This is because culturally determined inequalities, such as poverty or poor sanitation, render health care less accessible to certain cultural groups, and it makes them more vulnerable to a pandemic outbreak than wealthier and more powerful cultural groups. Moreover, scholars found that an outbreak of a pandemic typically leads to a politics of blame (see, Kapiriri & Ross, 2020). For example, several incidents of discrimination against Asian populations occurred during the SARS outbreak in Toronto in the early 2000s (Kapiriri & Ross, 2020), and we have seen (and still see) similar examples of discrimination toward Asian Americans during the Covid-19 pandemic (Croucher et al., 2020). Another example was the insistent “cultural” identification of different varieties of the Covid-19 virus, such as the “Brazilian,” “South-African” or the “Indian” variants. This kind of naming may well serve a practical and health related purpose, namely the identification and isolation of dangerous spreads of a disease. Yet, they also imply a risk of identifying a virological infection with non-­ related cultural biases that the name of a country may carry (stigmatizing these cultures and their lifestyles as less “healthy” or “clean”). The problem here is not the identification of contributing factors and locations of an outbreak of a disease itself, but the fact that most of the emphasis is on the so-called “outbreak narrative,” which focuses on identification of the outbreak, global networking and containment, rather than on long-term solutions and a concern for discrimination of vulnerable groups (Dry & Leach, 2010, 1). Thus, in this third chapter (titled, “From Blame Narrative to Just Narrative. A Hermeneutical Perspectives on Pandemics”), the author examines cultural discrimination as a pandemic response from the perspective of phenomenological hermeneutics (e.g. Ricoeur, 2008). By phenomenological hermeneutics, he understands the interpretation of our lived existence in social relations and the different social narratives existing in these relations (cultural groups, communities and societies). He argues that a hermeneutical description of social ideology enables us to understand part of the power mechanism behind blame

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narratives in pandemic responses: governments have a tendency to defend their own values, ideas and identities, which easily leads to an identification of what is wrong in terms of what does not work with regard to policies in place (e.g. failures in health care systems, citizens not complying to rules or identification of countries with dangerous variants). To restore the sense of being-in-the-world with others that may be covered up by these ideological interpretations of the lifeworld, we also invited contributions that discuss the difference between having a body (Körper) versus being a body (Leib). What does it mean to care for our Körper versus our Leib? To what extend our phenomenological and hermeneutical paradigms of understanding the lifeworld and subjectivity impact on our conceptions of health and vulnerability ? A description of the various disturbances of intersubjectivity and collective intentionality can point us to the way in which we embody our life, and we lack a healthy embodiment. On this topic, for example, Valeria Bizzari explains vulnerability in Chap. 4, titled “The Ontological and Ethical Value of Vulnerability: A Reflection Between Phenomenology and Psychopathology” by using R. M. Rilke’s metaphor in “Die Aufzeichnungen des Maltes Lauridis Brigge,” who describes pregnant women as beautiful creatures bringing two gifts: one baby and one death. From this metaphoric image we can gather that vulnerability seems to belong to human existence as such, even before birth, and can be included within those phenomena that can be described as “liminal,” such as death, pain, or illness. Being intrinsic to human existence, they seem nonetheless very difficult to define and contextualize. For a phenomenologist, for instance, this means to account for those phenomena that are not directly experienced by the subject, since they are indeed characterized by a sort of a- phenomenality that makes it impossible to grasp them directly. In this view, Grenz-situationen put in crisis the notion of phenomenological experience itself since they are considered “limits” of consciousness. The aim of Bizzari’s paper is to put into dialogue Jaspers and Husserl (that is to say, psychopathology and philosophy) on the theme of limits and human vulnerability. The notion of “limit-­situations” has been firstly introduced by Jaspers in the context of psychopathology (especially in Psychologie der Weltanschauungen, 1925) but it is echoed throughout the entire history of the phenomenological movement, starting with the Heideggerian thought and the concept of the “emotional situation” (Befindlichkeit), an intertwinement of passivity and opacity that characterize our existence. Limits-phenomena can be found also in Husserl’s late work (especially in Grenzprobleme der Phänomenologie, 2014) and in authors such as Fink, Merleau-Ponty, Scheler as well as in the contemporary debate (Steinbock, Mensch, Bernet, Drummond, among others). In this paper, the author contextualizes limit-situations to the broader context of well-­ being, that is one of the common goals of philosophy and psychiatry. Starting from an analysis of the notion of “liminal situation” itself within the history of philosophy, the author distinguishes between Grenze (limit) and Schranke (barrier) and argues that our vulnerability (which involves our mortality, our exposure to pain and illness etc.) should be understood as limits and not as insurmountable barriers. Then, she focuses on a definition of a person as a temporal and corporeal being whose existence itself inevitably includes limit-phenomena such as pain and death.

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In the third part, she compares Husserl’s and Jaspers’ views and hermeneutic frameworks and the way they compensate and enrich each other. The final aim is to fruitfully combine their description, and to propose a notion of limits-phenomena that should be included in the definition of humanity itself and used in the context of well-being, that usually excludes any reference to human vulnerability. On the contrary, in the wake of Husserl and Jaspers, she believes that we can achieve well-­ being only if we take into account limits- phenomena, and if we conceive of the person not as a transcendental being, but as a fragile and bodily entity. According to this view, vulnerability itself can assume an axiological value and guide an ethical paradigm whose focus is “to cure” and not merely to reach “justice” (as the predominant moral theories suppose). Following up on the way psychopathology may help explore human vulnerability and how humans relate to the social and natural world, Thomas Fuchs, in Chap. 5, titled “Why Does Mental Illness Exist? Reflections on Human Vulnerability,” investigates more fundamentally the conditions of possibility for humans to become mentally ill in the first place. The fact that persistent mental disorders do not occur in free-living animals speaks for an anthropological vulnerability, i.e. a specific mental endangerment of humans. The paper examines several reasons for this vulnerability and locates it above all in the special openness, variability, but also contradictory nature of the human form of organization and existence. According to Helmuth Plessner (1928, 2019), this life form is essentially characterized by the eccentric position, i.e. the ability to see oneself from the outside, through the eyes of others. This creates a fundamental polarity of being-a-body (Leib) and having-a-body (Körper), of centrality and decentration, primary selfhood and role identity, which can lead to different psychological conflicts and finally disorders. Culture-specific forms of socialization contribute significantly to these conflicts. Finally, this disposition to mental illness is interpreted also as an existential vulnerability, namely as a special sensitivity of certain persons to the contradictions and resulting limit situations of human existence. Hence, well-being may itself be redefined in regard to our acceptance and acknowledgment of interdependence rather than the ongoing effort to meet external standards. When we feel well, we accept our self-transformation, we acknowledge our lack of control over what life might bring to us. This bears a significant impact on the formation of social and community bonds. To further explore this point, Mark Cherry argues in Chap. 6, titled “Well-Being, Health, and Human Embodiment: The Familial Lifeworld,” that the embodied social reality of the family plays a central role in human health and well-being. The human family is part of the fabric of social reality that is phenomenologically immediately given. It exists before any judgment; it exists even before one explicitly categorically thinks of its unity. Yet, the family is a central part of our experience and consciousness of social reality. It exists as an already existing social unity. Persons and their intimate relationships are presented to consciousness and to thought as existing in families. The family is also a way in which we think of the unity of the persons, along with their relations who together are the reality of the family. Recognizing the family in this fashion provides a foundational condition for the possibility of

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being conscious of, experiencing and conceptualizing major domains of human experience. As the author argues, for example, the family is an epistemic as well as an ontological category, revealing the being of the lifeworld in ways that are necessary for adequately appreciating the embodiment of human health and well-being. Without the family, for example, there are significant areas of human flourishing about which one cannot know (e.g., what it means to be a parent, a child, or a spouse). The family also uncovers entire sets of moral duties, many to which one may not have explicitly consented (e.g., a grown child’s sense of moral obligation to his aging parents). Familial interactions show significant areas of altruistic behavior as well as other-directed personal costs and obligations at levels that are not typical of non-familial relationships. Close family relationships tend to be more benevolent and more intrusive than other types of human social interactions. Yet, significant cross-cultural sociobiological data support the conclusion that family life provides social, emotional, adaptive, and financial advantages, as well as the development of affective autonomy, increased longevity, improved physical and psychological health. Similarly, traumatic changes to family-life, such as the death of a spouse, are well-documented as negatively impacting personal stability and well-being. In short, as the author explores, in the absence of the family, central possibilities for mutual acknowledgement, social life, and human flourishing, which play fundamental roles in health and well-being, may go unrealized if they are not compensated by similar forms of socialization. In Chap. 7, titled “The Dissolution of the Pregnant City: A Philosophical Account of Early Pregnancy Loss and Enigmatic Grief,” Marjolein Oele argues in first person experience that early miscarriage may invoke a sense of loss that is enigmatic and ambiguous, often times complicated by the fact that the topic of miscarriage is culturally silenced. Understanding the frequency of such occurrences of early pregnancy loss (in terms of the “miscarriage iceberg”) adds to the existential need to conceptualize such losses as they bleed into life at its very emergence. The prevalent cultural discourse on loss, even when it deals with ambiguity, is focused upon individuation and personhood, which may complicate the grieving process in the case of early pregnancy loss. In searching for alternative epistemologies to address early pregnancy loss and its consequent grief, she proposes the following conceptual pathways to elucidate the nature of this loss. First, early pregnancy loss may be understood in terms of the dissipation of a pregnant constellation, thereby putting less emphasis on losing a “being” but rather a sense of participation. This clarifies the kind of loss involved but does not yet completely explain what kind of relationality is lost. Secondly, the grief involved in early pregnancy loss benefits from the Freudian-inspired theories of Pauline Boss and Judith Butler, who emphasize that grief entails absence and presence (Boss) as well as a deep loss of identity given the loss of relational ties that inform identity (Butler). This deepens the account of grief but does not precisely address the loss of mere emergent relationality. Thirdly, following Gilbert Simondon’s theory on ontogenesis, pregnancy loss involves losing a bridge to a pre-­individual relationality, due to which the formerly pregnant body cannot easily

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leap “back” into former forms of individuation nor leap forward into a socially recognized altered collectivity. This account is able to clarify the kind of relational loss involved in early pregnancy loss. In Chap. 8, titled “K(in)Vulnerability: Indigenous and Anthropocene Perspectives on Kin and Vulnerability,” Gerard Kuperus explores kinship and vulnerability partially formulated within the context of the Turtle Island myth. In the myth and the cultures based on it, we are always seen in relationships to the non-human world, not as masters, but rather as dependent agents. Kinship with the natural world is central. In the modern Western mindset, on the other hand, we have attempted to make ourselves into beings that are not vulnerable. We see the non-human world as consisting of passive entities ready to be manipulated while giving ourselves a strong sense of agency in the form of mastery. In this modern mindset we seem to have a fear of losing this invulnerability. Thus, we remain strong, we think, by not recognizing kinship with the natural world. If a forest is seen as our kin, we would mourn the loss of that forest. We might avoid such mourning by making sure no one would hurt our own relatives. The chapter suggests that the ultimate challenge of the Anthropocene (or rather to get out of it) is to make ourselves more vulnerable. Kinship is not only a making oneself vulnerable, it also makes invulnerable. A personified world of natural entities transforms our sense of vulnerability and will lead us to step beyond the dichotomy of vulnerability and invulnerability. In Chap. 9, titled “Vulnerability, Wellbeing and Health,” Roxana Baiasu explicitly argues that the concept of vulnerability is crucial for an account of well-being. Wellbeing has been taken to be at the core of the concept of health (as the World Health Organisation also defines it). Yet, she suggests that a proper understanding of health and wellbeing should start with an investigation of vulnerability and ill health and, in particular, the lived experience of these aspects of the human condition. The lived experience of vulnerability and, in particular, ill health involves physical, mental and social suffering as well as experiences of wrongs, harms and injustices which are often rooted in certain misconceptions and myths about vulnerability, illness and mental ill health. She argues that dominant notions of ‘vulnerability’, ‘health’, and ‘wellbeing’ are not only unclear but unrealistic and ethically problematic. This paper seeks to expose some of these limitations and, at the same time, offers a contribution to the clarification of the concepts at issue. The aim is to develop a more inclusive and realistic conception of health and wellbeing which, in its turn, can help promote life-enhancing possibilities to be and to live well in health or illness. To do so, the author discusses two concepts of vulnerability, and point out certain limitations of dominant approaches to them. She offers an alternative understanding of these two concepts of vulnerability, and of the relation between them and applies this analysis to certain discussions concerning illness and mental health to identify certain life-enhancing possibilities of vulnerability that constitute resilient wellbeing and are conducive to health. As part of the discussion, she points out the social, relational, and intersectional aspects of vulnerability, resilient wellbeing, and health, and indicates how the approach she proposes can, contribute to current ethical and political discussions about these issues.

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In Chap. 10, titled, “Vulnerability, Interdependence and the Care for the Living,” Elodie Boublil shows how the philosophical investigation of vulnerability has led to an existential, social, and ethical reflection that brought to light a fundamental, if not ontological, interdependence among human beings. The emphasis on vulnerability and interdependence stresses the ethical necessity of a critical concept of care in order to undermine the paradigm of autonomy and the modern understanding of well-being in terms of individual self-achievement and world mastery. This chapter examines the nature of this interdependence and the type of relations that are involved in these dynamics. The author argues that caring for the living involves a holistic approach of the human being that takes into consideration not only the plurality of her interpersonal relations but also her relation to the environment and her relation to her “self”. Consequently, speaking of interdependence also implies recasting critically the philosophical understanding of our modern concepts of nature and culture along the lines of a philosophical critique of the immunity paradigm. Drawing on phenomenological ethics, this chapter shows that the concept of responsibility that stems from this renewed understanding of interdependence implies a responsive ethics that articulates the dignity of human beings as persons with the care for the living they demonstrate in the “forms of life” they inhabit with others. Finally, the last group of chapters explores further this conceptual reframing of the concepts of vulnerability and well-being by exploring the role played by technology in health care and how it affects our relation to oneself and others. Responsibility (Verantwortlichkeit) is a key word of Husserl’s ethics, if not of phenomenological ethics tout court. Being able to respond to our own actions and pursue intersubjective well-being independently of what we gain from it is a crucial outcome for the good of our society. Being self-responsible involves, in fact, being able to critically think about well-being beyond quantitative measurements, utilitarian categories, and one’s intersectionality. If we disconnect the notion of well-being from responsibility, we fall into the risk of framing well-being in a sort of self-care that leaves our neighbors behind, while encouraging a sort of self-absorbed and narcissistic behavior. Moreover, digitalization of health and the transfer of important decisions to algorithms call even more for a rigorous reflection on what we expect from individual and societal well-being. Given the thriving technologies directed at improving our well-being (fitbit, smartwatches, health-app) and the virtual structures around which health providers are organizing their activities, we believe it is timely to invite reflections on the ethical risks and gaining toward a responsible well-being within the limits of our technology and society. To what extent does a phenomenological understanding of the concept of “care” help counterbalance the negative effects of a disembodied digital world? In Chap. 11, titled “From Digital Medicine to Embodied Care,” Francesca Brencio, remarks how digital medicine is an expanding interdisciplinary field of medicine concerned with the use of technologies as tools for measurement and intervention in healthcare. Mainly regarded as the future of medicine, digital medicine can assure at least four important goals: the increasing process of efficiency requested in any field of medicine; the improving medical quality of treatments and

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interventions; the sustainable economic success of these interventions and patient safety. Mainly grounded on systems and products driven by high-quality hardware and software, digital medicine offers terrific strategic opportunities in providing medical services globally, also through deployment of smartphone technology, internet communication and telemedicine. This contribution aims to explore the horizons and limits of digital medicine in light of an embodied care. In reaching this goal, this chapter is divided in three sections: in a first one, the author rebuilds the historical background of digital medicine and shows the contemporary scenario of this interdisciplinary field, its applications and its outcomes. In the second section, drawing on classical phenomenological and continental sources (Husserl, Heidegger, Jonas, Gadamer), she shows how treatment and care profoundly differ, and how health is not reducible to a product made by technologies or doctors, rather the result of an encounter: the one between the person and her condition, the one between the person and the diagnosis, and the one between the person and the prognosis. As such, recognition, empathy and a person-centred care cannot be reached by digital medicine, rather they are the result of a journey into the regions of the healing process. Following the legacy of Martin Heidegger and Maurice Merleau-­ Ponty, cardinal in this section will be the concept of embodied care. This concept shows the body’s centrality to care ethics, from a phenomenological perspective. Finally, in the third section, the author will show the potentialities and the limits of digital medicine in relation to person-centered care. Starting from the consideration that these two visions are in mutual tension, she shows to what extent an embodied care cannot be replaced by any device, despite the beneficial outcomes of certain applications of digital healthcare worldwide. In Chap. 12, titled “Aiming at Well-Being with Brain Implants: Any Risk of Implanting Unprecedented Vulnerabilities?” Tomislav Furlanis and Frederic Gilbert notice that many experimental trials are currently testing in paralyzed patients novel medical brain-computer interfaces (BCIs) operated by artificial intelligence (AI). While these new generations of implantable AI-controlled BCIs move rapidly ahead at trying to increase patients’ well-being, ethical concerns about their potential effects on patients’ sense of agency and control is growing. AI-operated implants offer great control at the level of neural circuits, but the extent to which this grasp on neuronal function affects the patient’s psychological level is still uncharted territory. A pressing ethical concern to explore is how BCIs may introduce unprecedented vulnerabilities to implanted individuals. This chapter shows that, on the one hand, artificially intelligent BCIs can positively increase a sense of the self and control, which contribute to well-being. On the other hand, they can introduce unprecedented vulnerabilities, for example, by inducing radical distress, feelings of loss of control, and a rupture of patient identity, which decrease one well-being. This calls for a careful ethical examination of new morally salient issues prior to seeing an increase in AI-related psychological effects in an open market. To conclude this volume, Susi Ferrarello focuses in Chap. 13, titled “Phenomenology of Emotions and Algorithms in Cases of Early Rehospitalizations” on the role of emotions in the digitalization of health. The proliferating inventions that are taking place under the umbrella of Artificial Intelligence, in particular

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through Machine Learning Technology, demand from us to become more and more aware of our emotional and ethical biases. An emotionally not-intelligent artificial intelligence would be, by definition, useless and damaging for human beings and their environment, especially if we pass to it our emotional and ethical flaws. For this reason, she believes that descriptive phenomenology can be a useful philosophical and psychological approach to improve the moral and emotional intelligence behind machine learning programming (Dreyfus, 1978, 1988). In fact, by describing (Giorgi, 2009) and interpreting (Colaizzi, 1978) the phenomena on which the programming is going to intervene phenomenology can provide qualitative data that unveil moral and social biases, thus helping the programmer to avoid their reproduction in the new technology. The phenomenological approach trains that experience-­ based moral competence of which artificial intelligence systems are generally lacking as it is capable to describe that pre-reflective and non-declarative nature of ethical inferences that can make sense of the surrounding and generate context-­ based judgments on which algorithms can be programmed to make both fair and detectable decisions. (Casacuberta, 2015).

References Boorse, C. (1977). Health as a theoretical concept. Philosophy of Science, 44(4), 542–573. Casacuberta, D. (2015). Ethical and technical aspects of emotions to create empathy in medical machines. In S. P. Van Rysewik & M. Pontier (Eds.), Machine in medical ethics. Springer. Colaizzi, P. (1978). Psychological research as the phenomenologist views it. In R. Vall & M. King (Eds.), Existential phenomenological alternatives for psychology. Oxford University Press. Croucher, S., Nguyen, T., & Rahmani, D. (2020). Prejudice toward Asian Americans in the Covid-19 pandemic: The effects of social media use in the United States. Frontiers Communications, Section, Health Communication, 5: 39. https://doi.org/10.3389/fcomm.2020.00039 Dreyfus, H. L. (1978). What computers can’t do: The limits of artificial intelligence. HarperCollins. Dreyfus, H. L. (1988). The Socratic and platonic basis of cognitivism. AI&Society. Dry, S., & Leach, M. (2010). Epidemic narratives. In S.  Dry & M.  Leach (Eds.), Epidemics: BScience, governance, and social justice (pp. 1–21). Routledge. Giorgi, A. (2009). The descriptive phenomenological method in psychology: A modified Husserlian approach. Duquesne University Press. Husserl, E. (2014). Grenzprobleme der Phänomenologie. Analysen des Unbewusstseins und der Instinkte. Metaphysik. Späte Ethik. Texte aus dem Nachlass (1908–1937) (Hua 42). Springer. Kapiriri, L., & Ross, A. (2020). The politics of disease epidemics: A comparative analysis of the SARS, Zika, and Ebola outbreaks. Global Social Welfare, 7(1), 33–45. https://doi.org/10.1007/ s40609-­018-­0123-­y Plessner, H. (2019). Levels of organic life and the human: An introduction to philosophical anthropology. Fordham University Press. (German original published 1928). Ricoeur, P. (2008). From text to action. Essays in Hermeneutics II (K. Blamey & J. B. Thompson, Trans.). Continuum.

Chapter 2

The Limits and Dangers of Risk-Benefit Analysis: From the Refugee Crisis to the Coronavirus Pandemic Kelly Oliver

In contemporary social theory, it’s sometimes difficult to separate ethics from politics and vice versa. Yet, justice demands attention to the necessary tension between ethics and politics, individuals and universals. While ethics addresses the singularity in each individual being, politics addresses the universality of all. The challenge for any theory of justice is navigating the abyss between ethics and politics in a way that acknowledges the singularity of each while respecting the equality of all. In this essay, I will extend an analysis of the tension between ethics and politics to the COVID-19 pandemic, which, arguably, brings to the foreground the tension between the individual and the universal like nothing else in recent experience. Medical ethicists and practitioners are struggling to develop criteria for triage medicine to weigh the benefits to the individual patient against the greater benefits to others and to society. Resource scarcity and contagion risks have required health systems to shift from a clinical ethic focused on the well-being of individual patients, to a public health ethic, focused on population health (Auriemma et  al., 2020). Triage medicine, developed for the battlefield during wartime, relies on risk-benefit calculations. For example, calculations about which patient has the best chance for survival, or which patient has the best chance of quality of life or continued longevity. In the current pandemic, these calculations are based on population categories of health such as diabetes, coronary disease, obesity, and age, along with assessments of the individual patient’s condition.

K. Oliver (*) Department of Philosophy, Vanderbilt University, Nashville, TN, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 E. Boublil, S. Ferrarello (eds.), The Vulnerability of the Human World, Philosophy and Medicine 148, https://doi.org/10.1007/978-3-031-41824-2_2

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2.1 Whose New Normal? In January 2020, like so many, I watched in horror as the coronavirus ravaged parts of China. By February, it had moved into Washington state in the Northwest of the United States, where I grew up, and where both of my sisters still live. By March, Nashville, Tennessee, in the Southeastern United States, where I live now, was in lockdown and I was living in strict quarantine, out of fear. By April, the folks I passed on the streets around my house had gone from being neighbors to being viral vectors. So much for the Levinasian face-to-face. I started picking up my mail wearing disposable gloves and wiping off my groceries with Clorox wipes. As an academic living a fairly solitary existence—aside from the masks, gloves, and wipes—my daily routine hadn’t changed that much. But my mental state was chaos. I was especially worried about my youngest sister, Ruthy, a cancer survivor and transplant recipient. When I talked with Ruthy on the phone, I was stunned. She wasn’t worried about the coronavirus. She said for her, nothing had changed. At first, I thought maybe she was a virus-denier. Then it dawned on me. As a severely immune-comprised liver and kidney transplant recipient, Ruthy had been wearing masks and wiping down her groceries for the last 20 years. She hadn’t stepped into a movie theater or a grocery store or flown on an airplane. She’d avoided crowds. After 20 years, she was used to the masks, the gloves, the isolation… as used to it as any social animal could be, anyway. For decades, she’d been living with the reality that any virus could take her out. My new normal was Ruthy’s old normal. Ruthy’s situation got me thinking. How many people are like her? While I’m freaking out about the new normal, how many people have lived their lives freaking out about their old normal? Certainly, the pandemic has brought into focus and exacerbated the “pre-existing conditions” of inequality—poverty, racism, lack of health care, lack of child-care, women’s double-burden, and the vulnerability of the elderly, among others. While we might explain older people dying from Covid at much higher rates as a fact of aging, how can we explain Black Americans dying at a significantly higher rate than White Americans? (see Stafford et al., 2020; Wolfe, 2020).1 Black Americans have higher rates of the pre-existing comorbidities of Covid, such as diabetes and heart disease. But, as many have pointed out, these pre-existing health conditions are the result of pre-existing social and economic inequalities (see Liu & Modir, 2020).2  Black Americans have a higher COVID-19 mortality rate than any other racial group in the U.S. with early data reporting that Black people make up 33% of all deaths (and only 13% of the population).” Kat Stafford, et. al, “Racial toll of virus grows even starker as more data emerges,” Associated Press, April 18, 2020. https://apnews.com/8a3430dd37e7c44290c7621f5af96d6b. See also Jan Wolfe, “African Americans more likely to die from Coronavirus illness, early data shows,” Reuters, April 6, 2020. https://www.reuters.com/article/us-health-coronavirus-usa-race/africanamericans-more-likely-to-die-from-coronavirus-illness-early-data-shows-idUSKBN21O2B6 2  Sabrina Liu and Sheila Modir, “The outbreak that was always here: Racial trauma in the context of COVID-19 and implications for mental health providers,” Psychological Trauma: Theory, Research, Practice, and Policy 12, no. 5 (2020) 439–442. https://doi.org/10.1037/tra0000784 1

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In general, the pandemic has highlighted that poor people have a higher risk of death than middle-class or wealthy people. Premature death from preventable diseases is part of the old normal for many of these communities. The pandemic just makes it worse. The disparities of society come into focus in all their brutality. So much for the rhetoric of “We’re all in this together.” Early in the pandemic, this phrase was used a lot as a rallying cry to bring people together and to emphasize that Covid-19 is a global phenomenon. For example, in April 2020, the United Nations response to Covid-19, written by UN Secretary António Guterres was entitled “We’re all in this together.” (Guterres, 2020)3 The pandemic has also brought into sharp relief that those who live in poverty or with marginal incomes are not only physically but also economically vulnerable (see Richard Blundell et al., 2020).4 In the United States, many parents who rely on school lunch programs to feed their children find themselves without food  (see Galvin, 2020).5 Parents who can’t afford child-care find themselves choosing between their jobs and their children. And working mothers bear the brunt of home-­ schooling and child-care (see Heggeness & Fields, 2020).6 In her NYT op-ed on parenting in a pandemic, Michelle Goldberg concludes, “Many of us who’d thought we were insulated from American precarity are finding out just how frightening the world can be when you don’t have” enough money or government support for child-­care (Goldberg, 2020).7 Again, the new normal for many parents is the frightening old normal for many others. For example, the frightening reality of a deadly virus is nothing new to gay men. Just as Covid has made an essential part of life—breathing—dangerous, the AIDS epidemic makes an essential part of life—sex—dangerous. One might respond, we can live without sex, but we can’t live without breathing. Fair enough. But some AIDS activists point out that just as it’s not realistic to say “Just stay home” because you can’t stay home forever, it’s not realistic to say “Just abstain.” Others compare wearing masks to wearing condoms. In a post entitled, “How to survive a plague,” Steve Martindale says, “From the number of complaints I’m hearing of pandemic fatigue and the widespread resistance to simple precautionary measures such as  Early in the pandemic, this phrase was used a lot as a rallying cry to bring people together and to emphasize that Covid-19 is a global phenomenon. For example, in April 2020, the United Nations response to Covid-19, written by UN Secretary António Guterres was entitled “We’re all in this together.” See: https://www.un.org/en/un-coronavirus-communications-team/we-are-all-togetherhuman-rights-and-covid-19-response-and. Accessed on 12-11-21. 4  Richard Blundell, Monica Costa Dias, Robert Joyce, and Xiaowei Xu, “COVID-19 and Inequalities,” Fiscal Studies 41, no. 2 (2020): 291–319. 5  Gaby Galvin, “COVID-19 Has Heightened the Threat of Child Hunger.” US News.com, June 16, 2020, https://www.usnews.com/news/healthiest-communities/articles/2020-06-16/coronavirusheightens-threat-of-child-hunger-food-insecurity 6  Misty Heggeness and Jason Fields, “Working Moms Bear Brunt of Home Schooling While Working During COVID-19,” US Census Bureau, August 18, 2020, https://www.census.gov/ library/stories/2020/08/parents-juggle-work-and-child-care-during-pandemic.html 7  Michelle Goldberg, “New York’s School Chaos Is Breaking Me” The New York Times, August 24, 2020, https://www.nytimes.com/2020/08/24/opinion/new-york-public-school-reopening.html 3

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wearing a mask at the grocery store, it’s clear to me that many people don’t fully appreciate what the gay community has been dealing with for the past 40 years and don’t understand how we survived the AIDS epidemic” (Martindale, 2020).8 I was surprised (but not really) when I zoomed with one of my students who told me she was secretly glad—as she rubbed her black-nailed hands together—that now everyone was getting a taste of what it was like to experience the world as she did. She wasn’t the only one afraid to leave her house, afraid of people on the streets, afraid of contagion. Now the whole world was. She has schizophrenia. How many others have lived with the daily terrors that many of us have had the luxury to avoid for the most part… until this pandemic? Belying the rhetoric of “We’re all in this together,” and “Covid as the great equalizer,” the pandemic has brought into focus the “pre-existing conditions” of inequality—poverty, racism, lack of health care, lack of child-care, women’s double burden, and the vulnerability of elderly, among others. Moreover, Covid has brought into relief the tragic inadequacy of risk-benefit analysis and utilitarian calculations of triage medicine, which determine who will be given scarce resources and who will be allowed to die.

2.2 The Dangers of Risk-Benefit Calculations In Carceral Humanitarianism (2017), I argue against utilitarian risk-benefit calculations as a principle of ethics. There, I argue that the utilitarian calculus used by both humanitarian aid organizations and so-called humanitarian military operations (with its surgical strikes and statistical modelling) reduces human life to statistical calculations of risk or benefit—and not just risk or benefit in the absolute, but rather risk or benefit as defined by the organization or government doing the calculations. Risks and benefits are always defined with certain goals in mind. They are never without context, and therefore purely “objective” or free from politics or bias. Thus, any utilitarian calculus assumes some good or goal beyond calculation such as pain or pleasure, suffering or quality of life. Even survival—life and death—are valued relative to particular goals that defy the calculations of risk-benefit analysis. In other words, employing risk-benefit and utilitarian calculations, requires making assumptions about end goals and values that defy those very calculations. It is not just that there are always factors beyond our control and variables we do not know, as the deadly coronavirus makes painfully clear, but also that risk-benefit and utilitarian calculations do not operate in a vacuum but necessarily make assumptions about the good. In the West, risk-benefit analysis or utilitarian calculative reasoning has become the dominant mode of addressing social issues, economic issues, and health issues. For example, Doctors without Borders uses complex risk-benefit computer

 Steve Martindale, “How to survive a plague,” Facebook, June 5, 2020, https://www.facebook. com/zambonis/ 8

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modeling to set policies about where to send medical aid (Neuman, 2016).9 And too many hospitals dealing with the Covid-19 pandemic have had to resort to triage medicine that uses risk-benefit analysis to distribute scarce resources such as ICU beds, oxygen, and ventilators. This type of calculative reasoning, however, treats human life as fungible and exchangeable, and thereby makes acceptable so-called collateral damage and death. The way risk-benefit analysis is used to calculate acceptable collateral damage in warfare is a prime example of the costs of calculable reason, where utilitarian arguments are used to justify acceptable levels of killing and death. The calculating machine at the heart of utilitarian risk-benefit analysis is dangerous when it makes individual lives fungible and exchangeable. This approach does not and cannot address the singularity of each living being. Both humanitarian aid and “humanitarian” warfare operate according to logics of calculation. In fact, humanitarian warfare and humanitarian aid operate in tandem. In a sense, nation states create refugees by limiting citizenship, and then pay humanitarian aid organizations to take care of them. National sovereignty and its concomitant notion of citizenship are dependent upon so-called neutral humanitarian space, which occupies an ambiguous space on the outskirts, and borders of, host countries. Refugees are detained in camps and detention centers at the borders in supposedly neutral humanitarian space free from politics and war. Yet, this neutral humanitarian space, often guarded by state police and military, is far from independent of state sovereignty. To the contrary, humanitarian space is coopted to maintain national sovereignty against the so-called threat of migrants, asylum seekers, and refugees. In other words, within carceral humanitarianism, refugees operate as both a threat to national sovereignty, and the justification for shoring up borders. The fact that the United States and the European Union pay other countries to keep refugees from crossing into their borders makes clear that the lives of these people can be bought and sold like so much cargo to be held in port or lost at sea. For example, the recent crisis in Belarus at the Polish border, where, according to migrants and refugees are being used as political pawns. According to the New York Times: “Europe has long paid other nations to keep refugees away from its borders… This gives countries on the European periphery the leverage, and incentive, to use those refugees as pawns” (see Fisher, 2021).10 Policies that treat refugees as collateral damage or units of exchange, where some lives are more valuable than others as calculated through risk-benefit analysis, renders the lives of refugees fungible, and therefore, ultimately, disposable.

 Michaël Neuman, ed by Michaël Neuman and Fabrice Weissman, Saving Lives and Staying Alive, (London: Hurst Publishers Limited, 2016). 10  Max Fisher, “In Border Crisis, Europe’s Unsavory Migration Deals Come Home,” New York Times, November 16, 2021, https://www.nytimes.com/2021/11/12/world/asia/migration-eupoland-belarus.html 9

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Statistical models that compute comparative valuations set out a hierarchy of life, human and otherwise, through which violence is justified, and some lives are valuable (in this case, citizens), while others are disposable (in this case, refugees). Yet, in any risk-benefit or utilitarian calculation, there is always a remainder that cannot be calculated—not just in the arithmetic sense, but also a remainder beyond calculation and beyond recognition. There is always something we don’t know that is necessarily left out of any calculation. We are not masters of the world and therefore there are always factors beyond our knowledge and control. In addition, there are elements beyond our comprehension. It is not, then, just a matter of gathering all the relevant data, and that fact that we always fall short. There are elements that affect our calculations that we aren’t even aware of, that we can never know. There will always be something outside our comprehension affecting our calculations. Furthermore, human experience, and the experience of life itself, cannot be reduced to calculations or exchangeable units. There is always something about life that transcends even the most sophisticated mathematical calculations. We might call this the remainder left over when we attempt to translate ethics into politics or the singular into the universal. There is always something about the singularity of each living being that cannot be reduced to any system of exchange value.

2.3 Justice Between Ethics and Politics Justice requires continually renegotiating the relationship between ethics and politics, singular and universal, precisely because there is always something in excess, something beyond recognition. This remainder is the ethical imperative that should keep up awake at night. Rather than lead to inquietude or apathy, the excess beyond our recognition keeps us actively searching for better ways to approach justice without resting on moral rules or risk-benefit calculations or self-righteous principles. The remainder beyond calculation, beyond recognition, demands that we continue to question our own principles and policies, that we continue to examine our concepts of justice and fairness and equality. An ethical politics is one in which justice demands the hyper-vigilance self-­ critical reflection on where any response—ethical or political—necessarily falls short. It is an ongoing task that cannot end with risk-benefit analysis. Despite the ethical insomnia and political vertigo caused by this interminable self-questioning, we must act—even leap. Although ultimately the gap between singularity and universality is impassible, the impossibility of achieving justice is no excuse for not attempting it every single day. This tension between politics (which addresses itself to what can be seen, and to the universal, what can be shared), and ethics (which addressed itself to what cannot be seen, and to the singular, what cannot be shared) is the knot at the center of justice.

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Justice is antithetical to utilitarian ethics insofar as individuals are not fungible units that can be exchanged. Utilitarianism relies on the calculability of pain, suffering, survival, or the quality of life itself. And the utilitarian calculus relies on determining thresholds that separate individuals into groups, whether it is those who are members of the moral community or the polis, and those who are not (for example animals), or those whose lives are worth saving and those whose lives are not. At some point, however, this type of line-drawing inevitably becomes either political or arbitrary. Take debates over the basis for membership in the moral community. What are the criteria for membership? Intelligence, language, reason, sentience, the ability to suffer? And whatever we decide should be the criteria, where do we draw the line? For example, what counts as a language? Does the bees signal dance count? Or, as some argue, is it merely a code and not a language? What counts as intelligence? Peter Singer argues that great apes should be extended rights or admitted to the moral community based on their intelligence, which is greater than severely mentally disabled persons (see Singer, 1999;  McMahan, 2009; Anstötz, 1993).11 Some disability scholars such as Eva Kittay have argued against this comparison, insisting that human beings should be accorded special status regardless of their mental abilities (Kittay, 1998a, b, 2009).12 The controversy over Singer’s argument demonstrates how utilitarian line-drawing is always a fraught endeavor that ultimately rests on an arbitrary cut off point. For example, in Animal Liberation, Singer draws the line between calms and shellfish, who supposedly cannot feel pain (Singer, 1990, 173–4).13 But what if we learn that shellfish can feel pain? In all these utilitarian endeavors, the liminal cases are unsettling because they reveal the arbitrariness of borders and the inadequacy of general classifications. This type of line-drawing or threshold not only ignores the singularity of each individual, but also poses an arbitrary or political dividing line as a natural border. The same is true of national borders used to keep migrants out. We see something similar in covid triage medicine where triage protocols disadvantage whole classes of people. Old people, disabled people, cancer survivors. The coronavirus lays bare the fantasy of calculable criteria as an ethical way of life. Covid reveals gaping inequities in the length and quality of life caused by social and economic “pre-existing conditions.” Celebrities and politicians from Madonna to

 Peter Singer, “Speciesism and Moral Status,” Metaphilosophy 40, Nos. 3–4 (July 2009): 567-581 and Peter Singer, “Reflections,” In The Lives of Animals, ed. Amy Gutman (Princeton: Princeton University Press, 1999). See also, Jeff MacMahan, “Cognitive Disability and Cognitive Enhancement,” Metaphilosophy, 40 nos. 3–4 (July 2009): 582-605 and Christoph Anstötz, “Profoundly Intellectually Disabled Humans and the Great Apes: A Comparison” In The Great Ape Project, ed. by Paola Cavelieri & Peter Singer, (New York: St. Martin’s Griffin, 1993), 159–172. 12  Eva Kittay, Love’s Labor: Women, Equality and Dependency (New York: Routledge, 1998a). Eva Kittay, “Welfare, Dependency, And a Public Ethic of Care,” Social Justice, 25:1, Issue 71 (Spring 1998b): 123–145, and Eva Kittay, “The Personal is Philosophical is Political” Metaphilosophy 40, nos 3–4, (2009): 606–627. 13  Peter Singer, Animal Liberation, 2nd ed. (New York: Harper Collins, 1990): 173–4. 11

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Andrew Cuomo called the coronavirus the “great equalizer.” In March 2020, Cuomo tweeted “This virus is the great equalizer.” In reality, covid is the great unequalizer… 14 The pandemic forces doctors and nurses to make impossible decisions about who is given the chance to live and who will die. But these decisions exist in the context of pre-existing conditions of poverty, racism, and unequal access to health care that skew any attempt at fair or reasonable calculation. In a fair and just world, there would be adequate resources available to everyone. Tragically, the real world is not so fair or just. And risk-benefit analysis and calculative reasoning become the justification for allowing some to die. When those calculations pose as justice or fairness, and when they allow us to feel certain, even righteous, in our decisions, then they risk a slippery slope that leads us to a place where any and all life can become disposable. The pandemic has made painfully clear the limitations of risk-benefit analysis and calculative reasoning. Doctors and nurses report being traumatized when forced to decide who will get life saving resources. Face-to-face with patients, risk-benefit calculations are not as straight forward as the mathematical or statistical modelling suggests. A group of research physicians at the University of California, describes the problem: Utilitarian approaches to ethical problems often appear to be more practical than many alternatives: we can know what the right course of action is by calculating whichever choice will produce the greatest good for the greatest number. Part of the appeal of utilitarian ethics is that it seems like it should “work.” In the real world, however, performing the relevant calculations can be far from easy. This is especially true in crisis situations. It may be impossible to collect the data needed as input for the calculations, it may be difficult or impossible to create the decision rules (predicting prognosis or comparing outcomes) that constitute the calculations ,the calculator may be impaired by any number of different factors (moral distress, fatigue, internal and external pressures, etc.) or non-utilitarian moral constraints (such as superseding egalitarian policies, or even exponentially increasing crisis severity) can make utilitarian approaches infeasible. (Fedyk et al., 2020)15

2.4 The “Lessor of Evils” Rather than an ethical solution, utilitarian risk-benefit analysis in a triage medicine is a “lessor of the evils” approach. In fact, as I discovered doing research for Carceral Humanitarianism, when discussing both humanitarian aid and warfare,

 Celebrities and politicians from Madonna to Andrew Cuomo called the coronavirus the “great equalizer.” In March 2020, Cuomo tweeted “This virus is the great equalizer.” For Madonna reference, see: https://www.cnn.com/2020/03/23/entertainment/madonna-coronavirus-video-intl-scli/ index.html. Accessed 12-11-21. 15  Mark Fedyk et  al. “Bioethics Emergencies Can Be Used to Perform a Real World Test of Utilitarian Policies,” The American Journal of Bioethics 20, no. 7: 101–103. https://doi.org/10.108 0/15265161.2020.1779398 14

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experts described risk-benefit and collateral damage calculations as the “lessor of the evils” (Oliver, 2017). Some even see these policies of assessing collateral damage as preventing the worst evil by preventing massacre, genocide, and mass death. But as Hannah Arendt reminds us, “Those who choose the lesser evil forget very quickly that they still chose evil” (Arendt, 2003, 30).16 In Carceral Humanitarianism, I consider the question of “the worst” violence. There, I argue that contemporary logics of proportionality employed by both humanitarian aid organization and humanitarian military operations are designed to mitigate and control violence and death to avoid the worst violence and death, according to calculations of the “lessor of evils.” Thus, we must ask what is the “most evil,” or the worst evil. We may think of genocide as the worst evil, and, in the West, “the worst” is often shorthand for the “final solution” and the Holocaust. Since the end of World War II, and the Cold War, “the worst” has become associated with the possibility of nuclear war, even the destruction of the entire planet. What if the worst is a result of the logic of calculation taken to the extreme at the expense of all other worldviews? What if the worst is when this calculable way of thinking is used to justify massacre, genocide, and mass death? When lives become fungible and exchange, then we risk “the worst.” Insofar as contemporary so-called “humanitarian” warfare operates according to the logic of utilitarian calculations of collateral damage that make some lives disposable, it too risks “the worst.” The worst goes beyond literal killing and signals the erasure a way of seeing the world—or we might as well say a world itself—by covering it over with another worldview. In this regard, comparative models that reduce life to units to be exchanged or plugged into equations operate according to a world-destroying genocidal logic. This is to say, when “the worst” becomes part of the economy of “lessor of evils,” life and death are reduced to a logic of calculation that makes them fungible; one life is weighed against another. Which is the lesser evil: One thousand four hundred and twenty-two refugees who died in the Mediterranean Sea in 2020 or the cost to citizens of the European Union of providing safe passage to refugees? Which is the lesser evil: killing one civilian infant or killing three soldiers in a surgical strike? Which is the lessor evil: a 50-year-old diabetic and mother of two with covid dying because she doesn’t have access to a ventilator, or a widowed and otherwise healthy 70-year-old man dying without access to a ventilator? Etc. Etc. What is an acceptable death? The death as collateral damage? To be calculable, each life must be reducible to a common denominator and exchangeable. Each life becomes a unit in an equation, a risk factor. Yet, as the examples I just mentioned suggest, these decisions as to which is worse—or which is the lesser of the evils—are always made by privileging one context over another. Citizenship over foreign nations. Civilians over military. Diabetes over motherhood. How do we weigh one life against another? How do we decide whose life is worth more? Whose life is worth more and whose life is

 Hannah Arendt, “Personal Responsibility Under Dictatorship” in Responsibility and Judgment (New York: Schocken Books, 2003): 30. 16

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expendable as collateral damage? Which factors are deemed relevant, and which are not? Which goals are deemed worthy, and which are not? Ultimately, utilitarian calculus cannot give us the answers to these questions.

2.5 Response Ethics In Witnessing: Beyond Recognition (2001), I proposed a notion of witnessing as the basis for rethinking the tension between ethics and politics as the productive possibility of opening up rather than closing off a response from others. Insofar as witnessing demands vigilant attention to what is beyond recognition, it always leaves open the possibility of expanding membership in the moral and political community and challenges every status quo and every notion of “we.” As I set out in Witnessing and developed further in Earth and World (2015), ethics must be set against politics, and justice is born from the productive tension between them. The tension between eyewitness testimony and bearing witness, between subject position and subjectivity, positions the subject between politics and ethics. It is the tension between our social-political contexts and our ethical responsibility to imagine life otherwise. Justice requires that we attend to both the demands of politics and ethics, the demands of the universal and the singular. Yet, there is always a tension between the universal and the singular. And, with witnessing as the basis of response ethics, it is precisely this tension that produces the possibility of justice, a justice always on the horizon and never present. The tension between politics and ethics, between the universal and the singular, becomes a productive tension when it inspires vigilance in attention to shifting norms of recognition and what—or who—falls beyond recognition. Justice born of witnessing requires vigilant attention to what is beyond recognition, and the ways in which the singular situation of each individual necessarily changes how we conceive of the political universal. Since Witnessing (2001), I have embraced a radical ethics that I call response ethics. Response ethics brings with it a concept of responsibility that goes beyond the notion that I’m responsible for my actions, or the Kantian proposition that I’m responsible for my intentions, or even the Sartrean addition that I’m responsible for my emotions, or even further the Levinasian idea that I’m responsible for the other, and further still beyond Derrida’s hyperbolic ethics that I’m responsible for what I cannot know and do not recognize. Within this radical ethics I’m responsible for what I do, what I intend, what I feel, for the other, and for the other’s response, and for what I do not know and cannot recognize, and in addition, for my unconscious desires and fears. Ultimately, then, I am responsible for what Freud calls the interminable analysis of my own motives and investments, desires and fears, both conscious and unconscious. Whereas the phenomenological subject can become conscious of its self-­ consciousness and its motives, desires and fears, which it owns, the psychoanalytic

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subject is continually an encounter with the otherness of the unconscious, which cannot completely come to consciousness or be owned up to, let alone owned. What is lacking from both traditional phenomenological accounts of subjectivity and psychoanalytical accounts, however, is the role of socio-political context in the formation of subject position and the role of historicity in the formation of subjectivity. The subject is constituted by virtue of a tension between finite historical contexts that constitute subject position on the one hand and the structure of infinite addressability and response-ability of subjectivity on the other. This is the basis of response ethics. One fundamental tenet of response ethics is taking responsibility for the other’s ability to respond. Another is taking responsibility not only for actions and their consequences, but also for unconscious desires. Response ethics is a radical ethics that grounds obligations to others in our deeply, and inherently, inter-relational mode of being. In my work, what started as a dialogic theory based on the address-response structure of subjectivity, has evolved to include not just human beings or other linguistic beings, but also all responsive living beings (see Oliver 2009, 2015).17 If we are by virtue of our ability to respond, which in turn, necessarily develops only through our relationships with others, then we obligated to our founding possibility, namely our responsive relationships. We have a responsibility to open up rather than close down the possibility of response from others, including nonhuman living beings. As Emmanuel Levinas says, we are responsible for the other’s response (although he doesn’t include nonhuman animals in his ethics; see Levinas, 1998, 112).18 Witnessing, then, entails a new radical way of approaching ethics as response ethics wherein we are responsible not only for our actions or our beliefs or even for the other’s response, but also for what we do not and cannot know, what we do not and cannot recognize. In this way, witnessing as response ethics demands that we remain vigilant to the ways in which even our attempts to be just and fair, to do the right thing, may exclude or silence some others we have not yet considered or recognized as members of our moral community. Witnessing beyond recognition, then, is not only a theory of subjectivity and subject position, but also an ethical politics that requires that we continually investigate our own investments, exclusionary or violent practices, and take responsibility. Our responsibility comes from our response-ability, or our ability to respond. And that is the crux of response ethics based on the double sense of witnessing that brings together the singularity of each with the plurality of those with whom we share a world, and ultimately all of those with whom we share our one and only planetary home, the earth. In this way, witnessing ethics as response ethics can take us beyond human-­ centrism and towards consideration of the ways in which all of the creatures of the  Kelly Oliver, Animal Lessons (Columbia University Press, 2009) and Earth and World (Columbia University Press, 2015). 18  Immanuel Levinas, Otherwise Than Being, translated by Alphonso Lingis (Pittsburgh: Duquesne University Press, 1998): 112. 17

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earth, and the earth itself, respond. Within response ethics, political and moral subjects are constituted not by their sovereignty and mastery but rather by address and response. Extending the analysis of witnessing, address and response (broadly conceived) are the basis of earth ethics grounded on cohabitation and interdependence. Thus, the primary obligation of response ethics is the responsibility to engender response, or facilitate, rather than close down, the ability to respond, in oneself, other living beings, and the environment. Response ethics is antithetical to utilitarian ethics insofar as individuals are not fungible units that can be exchanged. Utilitarianism relies on the calculability of pain, suffering, survival, or the quality of life itself. And the utilitarian calculus relies on determining thresholds that separate individuals into groups, whether it is those who are members of the moral community or the polis, and those who are not (for example animals), or those whose lives are worth saving and those whose lives are not. In Sovereignties in Question and again in The Beast and the Sovereign, Volume II, Derrida suggests that the death of each and every person, each and every living being, is not just the end of a world, but the end of the world.19 In an earlier work, Derrida says, “There is no common measure adequate to persuade me that a personal mourning is less serious than a nuclear war” (Derrida, 2005, 140).20 And once we think there is, we start on the slippery slope of utilitarian calculus and exclusionary line-drawing that risks making any or all life fungible and ultimately disposable. The death of each and every person, each and every living being, is not just the end of a world, but the end of the world. Each singular being is a world unlike any other. And from the perspective of its own life, each singular being is not just a world among others, but the world, the whole world, the only world. From the perspective of each, once its world ends, the world ends. How can risk-benefit analysis calculate the enormity of the world?

2.6 Covid: “The Great Equalizer”? In July, I got a call that was like a dagger through my heart. My sister, Ruthy was in the hospital with double pneumonia. I wanted to scream. My worst fears for her had been realized. But her Covid test came back negative. What a relief. She only had regular double-pneumonia. Over the last decades after her transplant, Ruthy has talked about her feelings of loneliness and isolation. She’s not allowed to be around groups of people. She’s not  Jacques Derrida, Sovereignties in Question: The Poetics of Paul Celan, trans. Thomas Dutoit, Outi Pasanen, et al. (New York: Fordham University Press, 2005), 140. 12. Cf. Derrida 2003 9; and Derrida 2011 259-260. For a discussion of what Derrida means by the end of “the world,” see Oliver, Earth and World; and Naas The End of the World and Other Teachable Moments. 20  Jacques Derrida, “No Apocalypse, Not Now” Diacritics 14, no. 2 (Summer 1984): 28. 19

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allowed to eat or drink a whole list of stuff, including any fresh fruit or vegetables, especially grapefruit. She takes a couple of fistfuls of pills every day. Her life is full of restrictions. Isolation and rules, so many rules. Do this. Don’t do that. All day, every day. And if she slips up, she could end up in the hospital or die. Although most people don’t have any idea about the trauma, even torture, associated with a liver and kidney transplant—some parts had to be without anesthesia because her blood pressure was too low—most of us are starting to feel what it’s like to live in isolation… and with rules, so many rules. And, if we slip up, we could end up in the hospital or die. Masks. Gloves. Clorox. Fear. Isolation. Loneliness. Despair. Many immune compromised people like my sister Ruthy experience loneliness and depression resulting from their necessary isolation. For those of us who have the privilege of working from home, our worlds are shrinking. Loneliness and depression have become our new normal. But for many, social deprivation has been their old normal.21 I’ve read that to fulfill the need for sociality, in Japan some are turning to companion robots, which reminds me of pandemic jokes about folks starting to talk to their Robot vacuums. My Roomba died recently. Luckily, I have cats. Even for anti-­ social introverted academics (like myself), the social isolation and deprivation of pandemic lock-down takes a toll on mental and physical health.22 Back in March, I thought without committee meetings, trips to campus, and trips to the grocery store, I could get more writing done. I was wrong. I couldn’t focus… at least not on my work. I was obsessed with doom surfing, and with that Seattle kid’s coronavirus tracker. Yet, “pre-existing” social and economic conditions meant that the mental health effects of the pandemic disproportionately affect some groups more than others.23 Again, some people have better access to health care, including mental health care, than others. In September, my sister Ruthy had major surgery to remove her spleen, which, according to her doctors, was “the size of the full-term baby.” Instead of generating white and red blood cells to boost her immune system, her spleen was doing the opposite. It was gobbling them up. I suggested she name it Nosferatu, after Morneau’s vampire associated with the black plague, which was filmed at the tail-­ end of the Spanish flu. She called it Vlad.

 Sarah Stahl, Scott Beach, Donald Musa, and Richard Schulz, “Living alone and depression: the modifying role of the perceived neighborhood environment,” Aging & Mental Health 21, no. 10 (June 2016): 1065–1071, https://doi.org/10.1080/13607863.2016.1191060 22  Tedros Adhanom Ghebreyesus, “Addressing mental health needs: an integral part of COVID-19 response,” World Psychiatry 19, no. 2 (June 2020): 129–130. 23  Ibid. See also Sabrina Liu and Sheila Modir. “The outbreak that was always here: Racial trauma in the context of COVID-19 and implications for mental health providers,” Psychological Trauma: Theory, Research, Practice, and Policy 12, no. 5 (2020): 439–442. https://doi.org/10.1037/ tra0000784 21

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Even the “unprecedented” coronavirus pandemic has precedents in the black plague, the Spanish flu, and the AIDS epidemic. Historically speaking, our new normal is not as new as we think. And surely during other plagues, given social disparities, the rhetoric of “We’re all in this together” rang hollow. Covid reveals another meaning of “We’re all in this together,” one our species prefers to disavow, and one we ignore at our own peril. Namely, we are interdependent beings, whether we like it or not. Covid reveals that American exceptionalism cannot protect us from the global spread of the virus. And human exceptionalism cannot protect us from catching viruses from other animals. We’re all in this together… indeed At the same time, the coronavirus reveals gaping inequities in that “we.” The length and quality of life is dramatically different due to inequalities caused by social and economic “pre-existing conditions.” What if we took seriously our interdependence, righted the wrongs of social injustice and inequality, and treated the true pre-existing conditions—the social conditions—that lead to the radically disproportionate effects of Covid? How can the utilitarian calculus of triage medicine account for those disparities? How do they factor into the equation? While triage medicine may be a necessary evil, or the lessor of the evils, we shouldn’t deceive ourselves that it isn’t evil. Many things are out of human control, but the distribution of resources isn’t one of them. While there’s no guarantee that a life can be saved, everyone could and should have the same access to all available resources. We shouldn’t be satisfied with risk-­benefit analyses or utilitarian calculations that save some lives at the expense of others. The deadly coronavirus reveals gaping inequities in the length and quality of life caused by social and economic “pre-existing conditions.” It is the great unequalizer that exposes both the ruse and the hope of “We’re all in this together.” Yes, the phrase covers over the disparities in our experience. But the hope is that we can come together to change the old normal that continues to plague the lives of so many of our brothers and our sisters.

References Arendt, H. (2003). Responsibility and judgment. Schocken Books. Auriemma, C. L., Molinero, A. M., Houtrow, A. J., Persad, G., White, D. B., & Halpern, S. D. (2020, May). Eliminating categorial exclusion criteria in crisis standards of care frameworks. The American Journal of Bioethics, 20(7), 28–36. https://doi.org/10.1080/15265161.2020.1764141 Blundell, R., Dias, M. C., Joyce, R., & Xiaowei, X. (2020). COVID-19 and inequalities. Fiscal Studies, 41(2), 291–319. Derrida, J. (2005). Sovereignties in question: The poetics of Paul Celan (T. Dutoit, O. Pasanen, et al., Trans.) (p. 140). Fordham University Press. Fedyk, M., Black, H., Yarborough, M., Fairman, N., & Wenger, N. S. (2020). Bioethics emergencies can be used to perform a real world test of utilitarian policies. The American Journal of Bioethics, 20(7), 101–103.

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Fisher, M. (2021, November 16). In border crisis, Europe’s unsavory migration deals come home. New York Times. https://www.nytimes.com/2021/11/12/world/asia/migration-­eu-­poland-­ belarus.html Galvin, G. (2020, June 16). COVID-19 has heightened the threat of child hunger. US News.com. https://www.usnews.com/news/healthiest-­communities/articles/2020-­06-­16/coronavirus-­ heightens-­threat-­of-­child-­hunger-­food-­insecurity Ghebreyesus, T. A. (2020, June). Addressing mental health needs: An integral part of COVID-19 response. World Psychiatry, 19(2), 129–130. Goldberg, M. (2020, August 24). New York’s school chaos is breaking me. The New York Times. https://www.nytimes.com/2020/08/24/opinion/new-­york-­public-­school-­reopening.html Heggeness, M., & Fields, J. (2020, August 18). Working moms bear brunt of home schooling while working during COVID-19. US Census Bureau. https://www.census.gov/library/stories/2020/08/parents-­juggle-­work-­and-­child-­care-­during-­pandemic.html Kittay, E. (1998a). Love’s labor: Women, equality and dependency. Routledge. Kittay, E. (1998b, Spring). Welfare, dependency, and a public ethic of care. Social Justice, 25(1, Issue 71), 123–145. Kittay, E. (2009). The personal is philosophical is political. Metaphilosophy, 40(3–4), 606–627. Levinas, I. (1998). Otherwise than being (A. Lingis, Trans.). Duquesne University Press. Liu, S., & Modir, S. (2020). The outbreak that was always here: Racial trauma in the context of COVID-19 and implications for mental health providers. Psychological Trauma Theory Research Practice and Policy, 12(5), 439–442. https://doi.org/10.1037/tra0000784 Martindale, Se. (2020, June 5). How to survive a plague. Facebook. https://www.facebook.com/ zambonis/ McMahan, J. (2009, July). Cognitive Disability and Cognitive Enhancement. Metaphilosophy, 40(3–4), 582–605. Oliver, K. (2009). Animal lessons. Columbia University Press. Oliver, K. (2015). Earth and world. Columbia University Press. Oliver, K. (2017). Carceral humanitarianism: The logics of refugee detention. University of Minnesota Press. Singer, P. (1990). Animal liberation (2nd ed.). Harper Collins. Singer, P. (1999). Reflections. In A. Gutman (Ed.), The lives of animals. Princeton University Press. Stafford, K., Hoyer, M., & Morrison, A. (2020, April 18). Racial toll of virus grows even starker as more data emerges. Associated Press. https://apnews.com/8a3430dd37e7c44290c762 1f5af96d6b Wolfe, J. (2020, April 6). African Americans more likely to die from coronavirus illness, early data shows. Reuters. https://www.reuters.com/article/us-­health-­coronavirus-­usa-­race/african-­ americans-­more-­likely-­to-­die-­from-­coronavirus-­illness-­early-­data-­shows-­idUSKBN21O2B6

Chapter 3

From Blame Narrative to Just Narrative: A Hermeneutical Perspective on Pandemics Geoffrey Dierckxsens

A global pandemic is a large outbreak of an infectious disease worldwide. At the outset of the Covid-19 pandemic in 2019–2020 a common narrative was that Covid-19 does not discriminate. It can affect everyone, despite their skin color, nationality, or political opinion. Since the development of the global corona pandemic, it has become painfully clear that nothing could be further from the truth. Covid-19 has only aggravated already existing forms of discrimination and inequality (e.g. less wealthy countries have less easy access to vaccination). In this chapter, I will focus on one specific type of discrimination – the blame narrative – which researchers in diverse fields have identified as occurring, not only during the Covid-19 pandemic, but also during other pandemics in the past, including the first identified SARS outbreak in 2002–2004 and the swine flu (H1N1) pandemic of 2009–2010. (Dry & Leach, 2010; Kapiriri & Ross, 2020; Pop, 2021). The blame narrative is a phenomenon of discrimination by which a social, often vulnerable, group is targeted and blamed for a pandemic outbreak. The blame narrative “reflects the politics of blame, which typically attributes responsibility for the sources of the outbreak [of a pandemic] to a cultural minority group” (Kapiriri & Ross, 2020, 34). In the following, I will examine this phenomenon from a hermeneutical perspective. By hermeneutics I understand the theory of interpretation of narratives, that may be individual or stories by and or about a social group (i.e. narratives that express a society’s values, ideas and/or politics). I will draw on Paul Ricoeur’s hermeneutics, in particular on his understanding of politics as the organizational structure of a historical community that governs according to certain shared ideas and values, expressing different narratives based on these ideas and values G. Dierckxsens (*) Interdisciplinary Research Lab for Bioethics (IRLaB), Institute of Philosophy, Czech Academy of Sciences (CAS), Prague, Czech Republic e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 E. Boublil, S. Ferrarello (eds.), The Vulnerability of the Human World, Philosophy and Medicine 148, https://doi.org/10.1007/978-3-031-41824-2_3

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(Ricoeur, 2008). The case I will aim to make is that a hermeneutical analysis of the blame narrative enables a better understanding of this narrative as an expression of political ideology that encourages discrimination of socially vulnerable groups in the name of protecting the identity and health of the majority of a society. The case I will argue for is that the blame narrative is an ideological phenomenon and that identifying this phenomenon as such leads the way to better future policy for pandemic management. While scholars in diverse fields have pointed out the existence of a consistent blame narrative in pandemic management (e.g. Kapiriri & Ross, 2020), the specific contribution that hermeneutics may offer is that it enables identifying the power mechanism behind the blame narrative. In order to better understand this power mechanism, this chapter is divided into four sections. In the first section, I will sketch the context of the problem and discuss the existing literature, which indicates that in several cases of a pandemic outbreak the political and scientific focus is on physically containing the outbreak, but insufficiently on avoiding discrimination and blame of social groups that are most vulnerable to the pandemic. In the second part of this chapter, I provide a hermeneutical interpretation of the blame narrative, arguing that the power mechanism behind blame narratives is ideological. Blame narratives occur when policymakers willingly or unwillingly confuse the need to protect their own ideas and values with pandemic policy: we need to protect ourselves from the others who are the bringers of the disease. Based on this hermeneutical interpretation of the blame narrative and on Ricoeur’s concept of ideology, I describe several concrete pitfalls policymakers may run into while dealing with a pandemic outbreak.1 I will argue that these pitfalls are the following. A first pitfall is trying to offer quick yet uncritical solutions to curb a pandemic (a panic reaction). A second is being insufficiently aware of the subtle and subconscious ways in which ideology operates in many aspects of our lives. A third risk occurs when policymakers are giving too much weight to authority, which does not necessarily include a positive caring action  but enforces ideological power. Finally, I will conclude by highlighting the significance of reason for pandemic policy in the sense of critical reflection on past pandemic policy and where it risks to intertwine with discrimination of different vulnerable groups.

3.1 The Blame Narrative: Three Kinds of Vulnerability Researchers from different fields, including health scientists and social scientists, have found that one of the major issues of a pandemic is that it tends to lead to discrimination of cultural minorities (Dry & Leach, 2010; Kapiriri & Ross, 2020; Pop, 2021).2 This is not only because certain social groups typically have less access

 By policymakers, I understand the people who are in charge of managing pandemic crisis, including politicians and experts in diverse fields. 2  I do not wish to go into the debate whether or not cultural minorities is a relevant term here. Instead, I will focus in this article as what I identify as social and cultural vulnerable groups. 1

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to health care, which makes them more vulnerable to a pandemic outbreak than wealthier and more powerful cultural groups. That is, social determinants, such as poverty, overcrowding and poor sanitation are contributing factors to the vulnerability to disease. What is more, scholars find that an outbreak of a pandemic typically leads to a certain ‘blame narrative’. People tend to target certain social groups as the bringers of a disease and as those who are responsible for the problems resulting from it (Kapiriri & Ross, 2020; see also Devakumar et  al., 2020). For example, several incidents of discrimination against Asian populations were reported during the SARS outbreak in Toronto in the early 2000s (Kapiriri & Ross, 2020). These incidents express a shared narrative that Asian communities were to blame for causing the SARS outbreak, because the disease was first identified in Asia. A similar form of blaming Asian people also occurred at the start of the Covid-19 pandemic, scholars find, as the increasing incidents of violence, racism and discrimination toward Asian Americans in the US had demonstrated (Croucher, 2020). In the case of a pandemic outbreak blame narratives find expression in diverse ways, such as in social media as well as other media (e.g. the repeated mentioning of Covid-19 variants as the “South-African” variant or the “Indian” variant before they were named after the letters of the Greek alphabet), but also in political discourse, and in science. Donald Trump also infamously identified the coronavirus as the “Chinese virus” (Devakumar et  al., 2020, 1194). More significantly perhaps, within scientific discourse we also see the blame narrative turning up. For instance, as Dry and Leach (2010) have pointed out, researchers found that the consumption of bush meat within certain African communities was a contributing factor in the spread of Ebola. Investigating this as an objective fact is of course not the issue. However, while pointing at these contributing factors, the researchers fail to mention that unbalanced power relations have led to poorer health conditions among certain social groups in the first place. The problem is thus not the identification of contributing factors of a disease in itself, but the fact that most of the emphasis is on the so-called “outbreak narrative,” which focuses on identification of the outbreak, global networking, and containment only. Yet, this offers “only narrow, partial perspectives on the dynamics and experiences associated with epidemics,” and overlooks potential long-term solutions that may prevent future pandemic outbreaks, such as better health care for poor populations (Dry & Leach, 2010, 3). Blame narratives do not just create tensions between social groups or may be picked up by science inadvertently. Furthermore, as Pop (2021) reports they also reinforce already existing forms of stigmatization, as was the case, for example, for Roma people in Romania during the Covid-19 pandemic, who were blamed for bringing the disease because of their lifestyle: The Roma’s transnational mobility reinforced the Romanian majority’s stereotypes about their structural nomadism. This established the foundation of their future casting as scapegoats in the time of epidemics. After all, people do not travel alone across borders; viruses travel with them. (Pop, 2021, 149)

This kind of blaming through the use of cultural stereotypes was reinforced by Romanian politics. As Pop (2021) remarks, the Romanian Minister of Internal Affairs blamed the Roma population of the village of Țăndărei for being responsible

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for a major outbreak of Covid-19, while claiming that the Roma population did not respect rules of social distancing and that the reason for that is that Roma people tend to move around. These claims by the Minister of Internal Affairs were then followed by the political decision for Țăndărei to go in a strict lockdown under police and military surveillance. Similar reports were published by the European Union Agency for Fundamental Rights (2020). The incidents in Romania, and the above discussed literature, suggest that the use of blame narrative is a widespread phenomenon during several pandemics, which seeps through among the general population and finds its way into politics and other authority organs as well. Pop provides further examples of policy-­blaming, referring to incidents during the H1N1 swine flu outbreak in 2009, when Roma patients were separated from other patients in Romanian hospitals. Similar incidents occurred in Bulgaria, where Roma patients are routinely placed together in hospitals in so-called “gypsy rooms” (Pop, 2021, 254). In a different context, as Holt (2020) reports, in Eastern Slovakia Roma settlements were exclusively ordered by the government led by the then prime minister Igor Matovič to go into quarantine to curb the Covid-19 outbreak, while people living outside of these settlements were not subjected to the same quarantine measures.3 The existence of blame narratives during pandemic outbreaks begs the question: who is particularly vulnerable when these outbreaks occur? Are governmental decisions to isolate certain vulnerable social groups – whether physically or verbally through blame – from other social groups really meant to protect the most vulnerable? For instance, while the principle “protect the vulnerable” has been used as a mantra during the Covid-19 outbreak, governmental decisions and measures that were supposed to safeguard this principle were often not scientifically motivated, leading to inconsistent policies and a loss of trust in governmental policy among certain communities and people (Maeckelberghe, 2021, iv50). Moreover, political leaders have willingly misused the Covid-19 situation to promote their own political agendas “to reinforce racial discrimination, doubling down, for example, on border policies and conflating public health restrictions with antimigrant rhetoric” (Devakumar et al., 2020, 1194). In Italy, for example, Matteo Salvini wrongly made a connection between African asylum seekers and Covid-19. It is clear that those who are most vulnerable are targeted in pandemic responses worldwide.

 It should be noted that there are of course differences in how Romania reacted to the Swine flu and how Slovakia responded to Covid-19. The ways in which countries respond to pandemic outbreaks is obviously complex and also differs between local communities and contexts. Also, the point is also not that governments are completely blind to discrimination that results from a pandemic outbreak. For example, in the case of Slovakia, some initiatives were taken to improve the sanitary conditions in Roma communities during the Covid-19 outbreak, even though these were insufficient (see the report on “Implications of COVID-19 pandemic on Roma and Travellers communities” of Slovakia ordered by the European Union Agency for Fundamental Human Rights (full reference in Bibliography)). Nonetheless, these initiatives generally do not outweigh the diverse forms of discrimination and the blame narrative is a common thread in how different countries, both Western and non Western react to pandemics. 3

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In fact, it is possible to distinguish different kinds of vulnerability. Evidently, people are physically vulnerable in a pandemic in the sense that they risk being infected by the virus, get ill, with potentially mortal consequences. For this reason, containment of a virus, by means of various methods such as social distancing, is an efficient strategy to counteract against a pandemic outbreak. Statistical data shows a correlation between government-imposed lockdowns and the infection and mortality rate of Covid-19 (e.g. Al Zobbi et al., 2020). However, this is not the only kind of vulnerability that is relevant in a pandemic crisis. Maeckelberghe has identified different layers of vulnerability during the Covid-19 pandemic (Maeckelberghe, 2021). For example, elderly people were singled out as one of the more vulnerable groups in the Covid-19 pandemic. Yet, they were vulnerable in multiple ways, not only physically in that they had a greater chance of getting severely ill with possibly mortal consequences, but also in that they were socially isolated from their families, being forced to spend the last months of their lives in loneliness. Building up on this, we can distinguish different kinds of vulnerability that typically occur during a pandemic outbreak. Physical bodily vulnerability, which in itself may come in different types, is one kind. Another, perhaps less obvious kind of vulnerability that can be distinguished is socio-economical vulnerability: poor communities are affected more by a pandemic outbreak in that they get ill more easily, because of different socio-economic factors such as poor sanitation conditions or less easy access to health care resources and vaccination (Kapiriri & Ross, 2020). As the literature shows, it is this second kind of vulnerability that is often ignored in political reactions against a pandemic outbreak. Yet another kind of vulnerability that may be distinguished is socio-cultural, rather than socio-economical, vulnerability. Research shows that different kinds of social biases and stereotypes are at play and worsened in situations of pandemic outbreak (Kapiriri & Ross, 2020; Pop, 2021). This leads to discrimination of certain cultural groups, which was the case for example, when discrimination against Roma communities occurred in Romania during Covid-19 and during earlier pandemics. Blame narratives fuel this kind of discrimination, which is not just a matter of a lack of economical or health care resources that are provided to socially vulnerable groups, but also of reinforcing power structures that stigmatize social groups. Therefore, it is essential, as researchers point out, to give a voice to different narratives in mainstream media and scholarly literature, especially “narratives of those most vulnerable to an epidemic.” (Kapiriri & Ross, 2020, 43). Nonetheless, the fact that the blame narrative is a widespread phenomenon begs several questions that remain unresolved in the existing literature, arguably the most pressing of which is the question how to give more space to alternative narratives within the public domain in order to improve future pandemic policy. In the following sections, I will argue that Ricoeur’s hermeneutics helps to better understand the mechanism of pandemic related blame narrative on a societal level and may offer some concrete solutions to improve future pandemic policy.

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3.2 Hermeneutics and Pandemics: Finding a Just Narrative Hermeneutics is a theory of the interpretation of narratives, traditionally classical and bible texts. In the twentieth century, hermeneutical philosophers, such as Hans-­ Georg Gadamer and Paul Ricoeur, found inspiration in phenomenology, the study of lived existence, and gave hermeneutics a different and a wider scope, defining it as a theory of the interpretation of our lived experiences and the different narratives that influence these experience (e.g. Ricoeur, 2008). These narratives, which influence how we experience life and how we act accordingly, may vary, ranging from written texts, such as novels and non-fictional stories, to personal accounts of others who tell us their experiences from which we may learn. Moreover, hermeneutics may also apply to stories that express the identity of social groups as in the cultural history and/or identity of a social group for example. In short, the role hermeneutics can play as a field of study is to understand typical human experiences, such as freedom and sympathy with others, and to reveal how certain narrative can impact these experiences (e.g. ideological narratives may limit freedom, but also our ethical behavior toward others). In this section, I will focus on Ricoeur’s hermeneutical philosophy as interpretation of narratives. More exactly, I will apply this idea to the phenomenon of blame narratives to better understand how these narratives work and how they may have an impact on our experience of a pandemic and the impact it has on our lives. Ricoeur has written extensively on narratives in their different meanings. For the purposes of this chapter, I will turn to his concept of narrative identity. Narrative identity refers in the first place to a person’s identity (Ricoeur, 1992). By this Ricoeur means that people tend to communicate their life events by telling stories to others: the personal experiences we have lived through constitute our identities (the whole of lived experiences) and we express this identity through narration. We often want to tell our stories to others, how we view things, this is part of a process of personal identification with ourselves. These kinds of storytelling are part of who we are and the search of who we wish to be, how we see ourselves as “the protagonist in a story,” our life story (Ricoeur, 1992, 122). Narrative identity should therefore be understood on a personal level. Yet, narrative identity also has a social aspect to it. Social groups can also identify themselves (as belonging together) through narration (e.g. the national history of a country). However, in the case of “the identity of a historical community” there is a risk of expressing identity in terms of “harmful ideologies of”national identity”” (Ricoeur, 1992, 122–3). In other words, social groups, in particular nations, have a potential to express their identities in terms of ideas that represent superiority and power, but also blame others not belonging to the nation (e.g. in an authoritarian regime). If we apply Ricoeur’s idea of social narrative identity to the blame narrative, it enables a better understanding of certain aspects of how it works. Ricoeur enables understanding the blame narrative as a social identity conflict and a political problem: what emerges in diverse blame narratives is the power (abuse) of a leading

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political elite, defending their identity, against the identity of a different social group (those who are blamed). For example, in the cases discussed above, blame occurs when leading politicians use stereotypes to ‘identify’ a social group as being a source of surging infections (e.g. Roma people being “unclean” or “itinerant” (Pop, 2021, 148)). And they use this identification to justify the exclusion of these social groups from society (e.g. containment of Roma settlements or doubling down on migration policy to exclude African asylum seekers as was the case in Italy). By doing so, they aim to protect the identity of their own group (we need to protect ourselves) by trying to keep the danger outside, yet ignoring the vulnerabilities of the other group. To see more clearly to what extent blame narratives are a political phenomenon, we may consider Ricoeur’s idea of “politics” understood in the sense of an organized historical community that is capable of making political decisions (Ricoeur, 2008, 321). The politics of a state (or a national government), as an organizational structure, is not just a formal structure, but an expression of concrete historical “mores,” and “accepted norms” (Ibid.). This is what Ricoeur understands as an historical community’s narrative identity, which means that any nation within a certain historical and cultural framework makes decisions that are based on a shared ideology, a system of ideas and values, which the members of the community share. These ideas may vary widely from more positive ones, such as values of democracy, to more harmful values, such as cultural stereotypes. Ideological values and ideas translate furthermore into the norms of a community, that is, the rules of how the community should act and decide upon problems or challenges. In the case of Romania discussed above, it was reported that cultural stereotypes about Roma people find expression in the country’s political decisions, as a response to a pandemic outbreak. My point is of course not  – in contrast with what conspiracy theorists may believe – that governments are systematically wrong, incapable or manipulative in dealing with a pandemic outbreak, that is that a pandemic would be fake news. Nor am I making a case that nations necessarily abuse power for ideologically violent reasons. As I mentioned earlier, protecting identity is not always a negative process. Furthermore, anti-infection measures, such as social distancing, physical lockdowns and vaccination, are scientifically proven methods that are vital to curb a pandemic and protect the physical identities of people. Nonetheless, approaching the phenomenon of the blame narrative as a political problem does reveal systematic errors that need to be addressed in a reaction against a pandemic outbreak. In general, it is key that governments are aware of their power position, their ideological sphere of influence and do not abuse it, but try to avoid decisions that may be ideologically harmful towards vulnerable social groups (e.g. discrimination, blame, ignorance). There is no universal way of responding to a pandemic because decisions always need to be taken in a specific cultural and historical context. It is vital that a careful interpretation of these contexts  – and the diverse social groups that exist within them – is considered when taking pandemic curbing decisions. Because ideology is not an absolute truth, it requires a certain interpretation of reality by a government or people (a kind of collective perception), and how to deal

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with this reality (varying depending on the interpretation and various contexts) (Ricoeur, 2008). At the same time, the interpretation processes at work within ideology reflect how a nation wants to represent itself in relation to its history and origin. In other words, ideology is at the same time a group’s policy for future decisions and a reflection of its historical identity. Ideology reflects a people’s identity in a certain cultural and historical framework. To put it simply, how a nation wants to represent itself, whether as an autocratic violent state or as an inclusive democracy works through in its response to a pandemic: How an epidemic is defined, in space and time, in terms of populations, institutions and interventions, depends on who gets to do the defining. There is always more than one way to tell a story, or ‘frame’ a particular issue. Within alternative narratives, the dynamics of a given disease, what counts as a problem, and to whom, can vary greatly. (Dry & Leach, 2010, 1)

A governmental response to a pandemic outbreak is thus also a question of finding the right or just narrative about a country’s future in relation to its history. This not only means protecting those who are immediately physically vulnerable or exposed to disease (looking for quick solutions in case of emergency), but also those who are economically and socially vulnerable, which requires long-term policy to improve the situation of these economically and socially vulnerable groups (e.g. improvement of sanitary conditions, providing better access to health care, inclusion of different social groups in society). Coping with pandemics is an ongoing story  – a longer term narrative – that does not end when a virus is finally contained but continues to be part of a government’s tasks and, ultimately, who identifies itself and represents itself to the world. It is not just formal management policy or health statistics, since it should reflect values of care and democracy that express how a people imagines the world to be.

3.3 Pitfalls In Ricoeur’s analysis of ideology (2008, 242–248), we can identify three main features of ideology that enable a better understanding of the power mechanism behind the blame narrative and highlight some of the pitfalls a nation, and their politicians and policymakers, may run into while dealing with a pandemic outbreak.4 These features are: (a) Ideology is more efficient when simplified. (b) Ideology influences how we think and what we believe also on a subconscious level.  It is important to note that in this passage in From Text to Action, “Search for Criteria of the Ideological Phenomenon,” Ricoeur actually identifies five traits of ideology. I just focus on three of these that, as I will argue, are relevant for understanding blame narratives as an ideological phenomenon. 4

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(c) Ideologies are hostile toward what is new and innovative because this is not in favor of identification of a culture and its history. I will briefly discuss these points in turn and highlight how they may assist in avoiding blame narrative in politics.

3.3.1 Easy, Does It? Simple claims and beliefs are obviously easier to sell to a wide audience, than are complex nuanced opinions. This is not to suggest that people are unintelligent, but simple messages evidently stick more easily in our collective minds. While it takes time and reflection to develop a nuanced and critical attitude, easy messages spread fast. Therefore, people spreading ideological messages have a tendency of “simplifying,” since ideology’s function is to spread among people as a shared social imaginary (Ricoeur, 2008, 243). Whereas a virus searches for a way of physically spreading quickly by finding hosts, ideology finds the way of the least resistance when packaged as a simple message: when “ideas […] become opinions […] its social efficacy” enhances and critical thought diminishes (Ricoeur, 2008, 43). When political decisions need to be critical and well informed, as is the case in a health care crisis, when the lives of many vulnerable people are at stake, it is important that political decisions and opinions are free from ideological stereotypes or easy opinions. For a pandemic outbreak this means that political directions that aim at containing a virus should be informed by accurate epidemiological information, but also that actions to prevent the virus from spreading do not stigmatize certain social groups. Politicians should be carefully aware of the ideological content their decisions may carry, obviously without abusing it, and should not use epidemiological facts as an excuse to stigmatize and polarize. In a certain sense, simple policy may be an advantage in responding to a pandemic outbreak: a story that sticks easier might actually mobilize people more quickly, make them aware of the need to be cautious, protect themselves, and it may limit panic and disorientation (e.g. clear communication as to how to socially distance). However, rapid communication and decision making that is not properly thought through may lead to acting upon cultural stereotypes rather than on thoughtful concern. Moreover, clear communication does not need to exclude thoughtful concern of culturally, economically and socially vulnerable groups. In the case of the Roma people in Slovakia, a controverse would have been avoided if the government had also listened to concerns of “local Roma organisations,” who had serious concerns about quarantine such as the shortage of “food and other basic provisions for people in [Roma] settlements” (Holt, 2020, 659). As mentioned earlier, to some extent this did happen, but too little while in several cases it were the locals and NGO’s that took the initiatives instead of the government (see the report referred to in footnote 3). Exchanging blame narrative for just narrative thus requires

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governmental caution as to avoid overly hasted decisions and communication that trigger panic reactions and actually do more harm instead of good. A first pitfall politicians and policy makers run into while dealing with a pandemic crisis is thus choosing quick and easy solutions over well considered and longer-term options that not only protect people physically (and immediately), but also are designed to develop democratic values and aim at social inclusion. Politics would benefit from a hermeneutical attitude, which means that it should include a critical-reflexive attitude and avoid misuse of political agendas or ideological power. A hermeneutical attitude implies awareness of people’s lived existences and the diverse social and cultural narratives that give meaning to these existences. Such an attitude may also imply making decisions and policy to curb a pandemic when it occurs, yet also reflecting back on past policy with the idea of improving it.

3.3.2 Behind Our Backs We may note that it is difficult, if not impossible, to consider all the different social and cultural narratives that are at work in a society and influence how people think and what they believe. The whole of different beliefs, norms and values circulating between social groups in a society is not something to get a clear and full picture off, because of its many nuances. Moreover, ideology, for example cultural stereotypes, work through in our opinions and actions unconsciously: ideology “operates behind our backs, rather than appearing as a theme before our eyes. (Ricoeur, 2008, 244). Ricoeur’s notion of ideology is understood in relation to the social imaginary, a concept also used in social sciences (see, Ricoeur, 2008, 301 ff.). This is a significantly broad concept in that it refers to the whole realm of a society’s different social values (implicit beliefs), norms (explicit institutionalized rules and laws, and symbols (representing these values and norms (e.g. a cultural ritual)). All of these different layers of meaning may be or become ideological in the sense of political ideals of a nation (values of beauty ideals). Yet, the fact that ideology relates to such a vast social realm makes it difficult to grasp. It shows in societies in subtle ways. Often, we are not aware that our opinions and actions, the stories we tell about others, are colored by ideology (e.g. microaggressions). Ideology easily starts to lead its own life so to speak, it is essentially “uncritical” (Ricoeur, 2008, 244). How good a policy to fight a pandemic may be, there is always a risk that it gets colored by negative or harmful ideological meanings, such as harmful cultural stereotypes. The widespread use of blame narratives in politics and science, as a response to pandemics, demonstrates the omnipresence of ideological meanings in pandemic policy. As Kapiriri and Ross (2020, 42) point out for example: [The] limited focus on the role of poverty in the peer-reviewed medical literature calls into question the politics of the research process itself. For example, what institutions are funding the research and what are the interests of the stakeholders in the research process?

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Science plays an important role in dealing with (future) pandemics. Yet, this not only means that science is important as a direct reaction to a pandemic outbreak (statistics, vaccination, identification and containment of a virus). It needs to play a bigger role in the longer term (e.g. tracking the role of poverty in the facilitation of disease spread). Moreover, hermeneutics, as a philosophical discipline, may assist here. By means of critical interpretation of different narratives used in policy and science, hermeneutics can track the influence of harmful ideologies within these narratives. This means, firstly, that politicians and scientists may benefit from practicing hermeneutics, that is, taking a critical attitude toward how social values and norms impact their own ideas and actions. Secondly, greater funding for the humanities and social sciences, involving scientists from diverse fields, such as philosophy, bioethics or sociology, to policymaking and politics, can be of direct benefit for dealing with pandemics in the longer term by shifting more focus to social and cultural vulnerabilities. Another pitfall politics and science may run into while dealing with pandemics is thus consciously and unconsciously shifting the focus away from the workings of ideology in pandemic policy.

3.3.3 Sticking to the Rules A third pitfall that pandemic policy may run into relates to ideologies’ tendency to emphasize “orthodoxy [and] intolerance […] when novelty seriously threatens the possibility of the group [e.g. the politicians and policy makers] recognizing and rediscovering itself” (Ricoeur, 2008, 244). Simply put, politicians want to stay in office, be re-elected if they can, and policy is designed for this purpose, not necessarily to ensure the well-being of vulnerable people in the long run. Of course, I am not denying that concern for a population can be, and often is, a major point on political agendas. Yet, it is clear from the fact that the blame narrative is so consistent in pandemic policy, that serious thought should be invested in the role care should play in policy, in particular towards socially vulnerable groups. In pandemic policy priority is given to identification of the source of a virus, often in a foreign group, a group which is different or which is not part of the national identity. As Kapiriri and Ross put it, minority and marginalized communities are the most devastated by an epidemic. If organizations and governments are to adequately respond to these individuals and communities, it is critical that narratives of those most vulnerable to an epidemic – specifically poor communities – are represented in the mainstream media as well as in the peer reviewed published literature  – especially, the epidemiological and medical literature that tends to influence health programming and policymaking. (Kapariri & Ross, 2020, 43)

In other words, pandemic policy should be attentive to diverse narratives, in particular the stories of individuals and groups that are vulnerable. A pitfall policymakers risk to run into while dealing with a pandemic crisis is to overlook these diverse narratives, and to fail to digress from the conservative blame narrative.

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One way to overcome this pitfall may be found in what Ricoeur identifies as the antipode of ideology: utopia. Ricoeur defines utopia, as he does with ideology, in a social sense (not in a literary or pejorative sense) as “the way in which we radically rethink what is […] government” (Ricoeur, 2008, 312). It is not a fantasy about an unreachable world or reaching for impossible goals, but a “theory of imagination” (Ricoeur, 2008, 311). In terms of pandemic policy this means that looking at the numbers, albeit important, is not the only parameter for action. Equally important is reflecting back on how we have acted upon pandemics in the past, trying to improve on ways of action and social policy. While the notion of utopia may have a pejorative or negative connotation, it has the advantage of pointing out the need to be innovative and to improve pandemic policy where it fails. One way of improving future pandemic policy is to make it more rational by making ethical deliberation more explicit in the public domain. As Maeckelberghe notes, during the Covid-19 pandemic it “was sometimes hard to find consistency in policies. This resulted in a loss of trust from certain communities in policies and government” (Maeckelberghe, 2021, iv50). While an appeal to protect the vulnerable was often made, this was foremost to try and convince people to swallow restrictions. What was lacking were more “positive actions” and an explicit deliberation on who is actually vulnerable and what is adequate policy to meet relevant vulnerabilities, also on a global level, as in, for example, fair distribution of vaccinations (Ibid.). In sum, a significant pitfall for pandemic policy is to “overvalue” the significance of power, authority and to stick to a bureaucracy that functions to maintain the system, yet does not allow for a re-imagination of the social order (Ricoeur, 2008, 312). Social imagination plays a key role in addressing future policy for pandemic response. It may be applied by stimulating open ethical deliberation in public spaces, giving a voice to alternative narratives.

3.4 Discussion and Conclusions The three main features of ideology discussed above help to better understand how blame narratives work. Blame narratives protect a nation’s ideology and in that sense their identities. It is supposedly a matter of them (the outsiders bringing in the virus) against us (the insiders affected by the virus). Furthermore, the fact that the blame narrative is so consistent and widespread may be understood because it is a relatively simple ideological narrative that sticks well, in particular when compared to more complex stories of cultural diversity and the subtle working of different social contexts, values and norms. Simultaneously, the ideologies working behind blame narratives often operate on a subconscious level, which makes them harder to spot. The blame narrative is a story of identifying a cause and organizing to contain a pandemic, while at the same time looking for a scapegoat. It can therefore easily lead to ignorance of long and detailed histories of cultural groups that are subject to discrimination (e.g. as related to colonialism or the stigmatization of Roma people)

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that have contributed to pandemic outbreaks. Nevertheless, taking into account these stories can offer future solutions and improved policymaking in a pandemic crisis. Finally, sticking to a global containment plan – for example closing borders, ordering home isolation, implementing social distancing and so on – is not new and innovative. It is a strategy that has existed for centuries. Yet, how effective this strategy may be in the short term, it does not offer many solutions to improve pandemic policy, in particular when it comes to being sensible to culturally vulnerable groups. In order to truly improve future pandemic policy, what is needed is more critical reflection, open ethical deliberation in the public domain and re-imagination of discriminatory social orders. In response to the three pitfalls that I have identified above, hermeneutics can offer some concrete directions to improve future pandemic policy. A hermeneutical analysis of the blame narrative reveals, as I have argued, that much of the main narrative in pandemic policy is ideologically motivated: “narratives of blame, vulnerability, and responsibility are politically driven” (Kapiriri & Ross, 2020, 33). Hermeneutics as a theory of interpretation may be applied in science and politics to raise awareness of cultural diversity and the impact it has on pandemic policy. This means that scientists and politicians would benefit from being more reflective about different social values and ideas and how these work through in diverse social narratives and communities. Different pandemic policies will have a different impact on social communities. For science to be objective and politics to be just, it is important to realize that our actions and thoughts, including scientific and political actions and thoughts, are not value-neutral, but inherently influenced by different social values and ideas, often in subtle and subconscious ways. In conclusion, we can summarize that future pandemic policy-making would benefit by making an appeal to reason. Reason can be understood in one sense as “rational,” that is in the sense of a global economic organization (Ricoeur, 2008, 321). This means to strive for a just distribution of economic goods worldwide: improving sanitary conditions, reducing poverty and creating access to vaccination. Yet, reason should also be understood in a political sense, in a less global and more local sense. Reason understood in this sense means being “reasonable,” taking care of the well-being of people within a community (Ibid.). Connecting this back to the pitfalls discussed above, we can identify three types of reasons from which future pandemic policy would benefit (one for each pitfall). A first kind of reason is critical reflection on political decisions and scientific data, as to avoid overly hasty policy that is ideologically harmful. Secondly, future pandemic policy may benefit from reasonable open ethical debates. As we have seen, while there were many opinions about the Covid-19 pandemic, and how to deal with it, “ethical deliberations were often not explicitly clarified in public health decisions” (Maeckelberghe, 2021, iv50). Finally, pandemic policy would improve if we would actually try to learn from past policies and where they came short. Reason in terms of innovation is key here. If we want to get rid of the blame narrative and start looking for a more just narrative in response to future pandemic, we will need to do more than identifying the source of a virus and trying to contain it.

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References Al Zobbi, M., et al. (2020). Measurement method for evaluating the lockdown policies during the COVID-19 pandemic. International Journal of Environmental Research and Public Health, 17(5574), 1–9. https://doi.org/10.3390/ijerph17155574 Centre for the Research of Ethnicity and Culture. (2020). Implications of COVID-19 pandemic on Roma and travellers communities. Ordered and Published by the European Union Agency for Fundamental Rights. Published online June 15, 2020, https://fra.europa.eu/en/ country-­data/2020/implications-­covid-­19-­pandemic-­roma-­and-­travellers-­communities Croucher, S. M. (2020). Prejudice toward Asian Americans in the Covid-19 pandemic: The effects of social media use in the United States. Frontiers in Communication, 5, 1–12. https://doi. org/10.3389/fcomm.2020.00039 Devakumar, D., Shannon, G., Bhopal, S.  S., & Abubakar, I. (2020). Racism and discrimination in COVID-19 responses. The Lancet, 395(10231), 1194. https://doi.org/10.1016/ S0140-­6736(20)30792-­3 Dry, S., & Leach, M. (2010). Epidemic narratives. In S.  Dry & M.  Leach (Eds.), Epidemics: Science, governance, and social justice (pp. 1–21). Routledge. Holt, E. (2020). COVID-19 lockdown of Roma settlements in Slovakia. The Lancet Infectious Diseases, 20(6), 659. https://doi.org/10.1016/S1473-­3099(20)30381-­9 Kapiriri, L., & Ross, A. (2020). The politics of disease epidemics: a comparative analysis of the SARS, Zika, and Ebola outbreaks. Global Social Welfare, 7(1), 33–45. https://doi.org/10.1007/ s40609-­018-­0123-­y Maeckelberghe, E. (2021). Ethical implications of COVID-19: vulnerabilities in a global perspective. European Journal of Public Health, 31(Supplement 4), iv50–iv53. https://doi.org/10.1093/ eurpub/ckab158 Pop, C.  A. (2021). Romanian Roma and discrimination during the COVID-19 pandemic. In L. Manderson, N. J. Burke, A. Wahlberg (Eds.), Viral Loads: Anthropologies of urgency in the time of COVID-19. UCL Press. https://www.jstor.org/stable/j.ctv1j13zb3.14 Ricoeur, P. (1992). Oneself as another (K. Blamey, Trans.). University of Chicago Press. Ricoeur, P. (2008). From text to action. Essays in hermeneutics II (K. Blamey, & J. B. Thompson, Trans.). Continuum.

Chapter 4

The Ontological and Ethical Value of Vulnerability: A Reflection Between Phenomenology and Psychopathology Valeria Bizzari

I have no senses, no meaning, I have no limits. Eugenio Montale

4.1 What Is Vulnerability? The Temporal and Bodily Structure of the Subject What is vulnerability? How can we define it and eventually incorporate it in the description of our being? Is it something to avoid or can we conceive of it as a resource, as something that characterizes our most intimate being? In “Die Aufzeichnungen des Maltes Lauridis Brigge”, (Rilke, 1997) R. M. Rilke describes pregnant women as beautiful creatures bringing two gifts: one baby and one death.Vulnerability seems, therefore, to belong to human existence as such, even before birth: from the very moment we are born, we inexorably begin a journey marked by time and in the company of our body, the mean by which we inhabit the world through a link that has been described in terms of a corporeal implicatedness: “I find myself to be that person who is bound to this particular embodiment and who is irrevocably bound to suffer whatever this particular body suffers” (Toombs, 1992, 60). Phenomenology, more than other approaches, can account for the complexity of human existence in each of its shades by identifying its fundamental subjective functions, which turn out to be the body (conceived in its motivational, and not merely causal, role) and time (whose fundamental function is to provide the formal structure for self-awareness, enabling lived experience to be conceived as a unity of past, present and future moments). V. Bizzari (*) Institute of Philosophy, Husserl Archives, KU Leuven, Leuven, Belgium © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 E. Boublil, S. Ferrarello (eds.), The Vulnerability of the Human World, Philosophy and Medicine 148, https://doi.org/10.1007/978-3-031-41824-2_4

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In Husserl’s work, in particular, we can observe how the body becomes the vehicle and expression of a consciousness. Husserl, in fact, considers the living and embedded consciousness the result of the necessary connection between the psychic and the bodily dimensions. The notion of Leib extends the immanence of the flow of individual experiences to its diffusion in a body, to which this flow seems inextricably linked: “…they are one by means of their very essence; they are bound and interwoven together, they flow into one another in layers and are possible only in this unity” (Husserl, 1952, p. 98). The notion of the living body implies a union comparable to that between a color and its extension: there is an a priori mode of connection between these two elements. In this way, the typical functional and intentional structure of consciousness is made whole with the affective dimension of feeling; the psychic layer is inextricably linked to bodily extension. The agent’s image is thus more complete: it is not only a mere physical body, an object perceivable by others, but also the subject of experiences, perceptions, and emotions. It is also important to stress that in his description of the bodily subject, Husserl gives great importance to the kinaesthetic circumstances, thanks to which every object is perceived in relation to the space-time coordinates of the perceiving subject. In other words, there is an “if-then” (or “I can”) relation between the living body and the objects it addresses, whereby depending on its position, it can perceive a particular side of the thing and not another aspect of it, which, in turn, can be intentionally perceived if the subject changes position. At these points, one of the first definitions of corporeality that can be deduced from a reading of Husserlian texts (see in particular Ideas II and III) becomes clear, namely the connotation of the body as an organ of perception, an organ of the subject’s free will, but also a practical kinaesthetic horizon. Far from being a merely pure ego transcending the world, the Husserlian subject is thus characterized by a corporeality that is not merely a possibility, but a transcendental necessity: in order to be an individual living in the world and exercising its functions, the subject depends on its corporeality. Corporeality, in this sense, is anything but immutable and transcendent, as it is inexorably linked to the temporal unfolding of existence, which inevitably leads to death. Indeed, corporeality is closely linked to another fundamental structure: temporality. Their connection can be described as a complex but natural interweaving (Fuchs, 2013): in other words, we can argue not only that the body is temporal but that, in turn, it constitutes temporality. Corporeality and temporality, thus, turn out to be the supporting structures of subjectivity, whose main role is to actively contribute to the development of the life of consciousness at various levels: 1. The pre-reflective internal time consciousness1 is given by the rhythmicity of the body (for example, by the rhythm of some organic processes such as the

 It is worth noting that Husserl, in his text For the phenomenology of the internal time consciousness (1966), argued that time is the indispensable form of individual realities. From this point of view, consciousness is the cohesive whole of the temporal experiences that form the flow of life, a 1

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h­ eartbeat) and by the cyclic instincts and needs that guide the subject’s dispositions (thus also influencing her future). 2. The implicit bodily memory is composed of sedimented capacities and habits that allow the subject to project herself into the world according to her specific capacities; 3. Existential or autobiographical temporality: at this level, the subject possesses a reflective awareness of herself. Indeed, at this point, she does not only have a diachronic coherence of a basic corporeal self but also a history, a qualitative identity: she recognizes herself as a unique and irreplaceable person whose individuality persists over time. According to this perspective, time is linear, and the subject can reflect on her own consciousness and recognize herself as a finite and vulnerable creature.2 Therefore, it seems that our materiality, our corporeality, our being tied to others and subject to the inexorable flow of time makes us open to the world and vulnerable to it.

4.2 Vulnerability as Liminality. Husserl and the Grenzprobleme In a landscape long dominated by a vision of the subject unequivocally conditioned by Cartesian philosophy, Husserl’s phenomenology was used as a theoretical tool to overcome this dualism, to affirm, rather, the reincarnation of the psyche in a body, of thought within feeling. Although Husserl’s first works do not seem to be moving in a similar direction, it is possible to identify, especially in Ideas II, a vision of man as a psycho-physical being, completely rooted in the world and in corporeality, but nevertheless capable of the highest synthetic activities. In this way, an image of an essentially corporeal subject is configured—a material entity that, however, enjoys a particular status compared to the other things present in the world. The Husserlian subject is, in fact, an animated physical thing (beseelt), a spirit situated in the world of life.3 whole that is simultaneous in its occurrence, since in it intentional experiences, external perceptions, memories (the whole constituted by retentions, remembrances, the memory of the body), expectations (projects, desires, fears, worries, hopes), and the certainty of having to die coexist. 2  According to Minkowski, our experience of the lived future can be described as ‘the consciousness of our own death’, because we are constantly faced with the fragility of our existence and we plan and adapt our lives according to this perspective (Minkowski, 1970). 3  The problem of the body and the status of subjectivity is addressed by Husserl in a great number of places, even if there is no treatment exclusively dedicated to it. However, although the Master dealt with the subject above all in his unpublished manuscripts, it is possible to affirm that there was no real split with respect to his older production: on the contrary, from the earliest texts it is possible to find a “corporeal” subjectivity, although this meaning is certainly emphasized in his later works. Already in Thing and Space, a text from 1907, Husserl addresses the theme of corporeality in relation to perception.

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Even though the Husserlian subject is often associated with a pure ego that is completely detached from materiality, an emphasis on corporeality and the consequent lability of the subject can be found in numerous Husserlian works: as early as the 1907 courses, in fact, it is possible to find a phenomenological description of the body and its motility. The fields of research in which the Master calls the body into question include both the naturalistic attitude (in which the materiality of the subject is described as a subject of psychophysical investigation) and the personalistic attitude (in which the body is considered as an expression of the personal life of the subject, belonging to a specific social community with which it has a relationship of reciprocal influence). But it is above all from Ideas for a Pure Phenomenology and a Phenomenological Philosophy that the Husserlian reflection on this subject gradually becomes clearer. Whereas in Ideas I, (Husserl, 1913) Husserl sets himself the task of leaving the body aside through the phenomenological reduction in order to grasp the innermost meaning of the pure ego, it is undoubtedly in Ideas II (Husserl, 1952) that Husserl questions the body in greater depth.4 It is undoubtedly in Ideas II that Husserl investigates the body with more attention and emphasizes the multiplicity of senses in which it can be understood: the body is “lived body”, “animate object”, “body that appears externally”. In general, Husserl emphasizes the richness and complexity of the human body, which, on the one hand, is a mere physical object, subject to the natural laws of cause and effect, but on the other is an experiential subject, irreducible to the realm of mere objectivity. Nonetheless, “The same Body which serves me as means for all my perception obstructs me in the perception of itself and is a remarkably imperfectly construed thing” (Husserl, 1988, 167, my italics): from these words we can see how the transcendental subject is not a purely intellectual entity, but is bound to materiality and lability to such an extent that these seem to be the main attributes of existence. The description of an essentially vulnerable subject unfolds almost through a crescendo in the phenomenologist’s works, and we can find the pages that reveal these aspects of existence even more strikingly within the posthumous manuscripts. I refer, in particular, to the Grenzprobleme der Phänomenologie (Husserliana XLII), where the focus is on those phenomena that can be described as “liminal”, such as death, pain, or illness. Being intrinsic to human existence, they remain difficult to  This has led to a tendency on the part of many Husserlian commentators and scholars to describe the subject as completely disembodied. However, as E. Benhke notes, “the body that is set out of play here is merely the body that is assumed to be the ‘physical’ half of the inherited dualism. Moreover, this is only the first step in the critique: Husserl is effectively suspending the tacit hegemony of the prevailing presupposition whereby it is automatically accepted, as a matter of course, that the body is a physical reality that is a part of nature—and setting this assumption out of play frees us to address the body and embodiment phenomenologically rather than naturalistically. After suspending the unquestioned validity of naturalistic presuppositions concerning the body, then, the next step is to retrieve the body of experience, and Husserl employs various pivotal distinctions in order to open up the experience of embodiment for phenomenological investigation.” (E.  Behnke, Edmund Husserl: Phenomenology of Embodiment, in Internet Encyclopedia of Philosophy, http://www.iep.utm.edu/husspemb/). 4

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define and contextualize. For a phenomenologist, this marks a need to account for those phenomena that are not directly experienced by the subject because they are characterized by a sort of a-phenomenality that makes it impossible to grasp them directly: “…limit problems are those that transcend the limits of phenomenological description”5 (Husserl, 2014; Hua. XLII, p. XIX, footnote 1, my translation). In this view, Grenz-situationen put the notion of phenomenological experience itself in crisis as they are considered “limits” of consciousness. The notion of “limit-situations” was described by Jaspers in the context of psychopathology (especially in Psychologie der Weltanschauungen, 1925). However, it continued to echo throughout the entire history of the phenomenological movement, starting with the Heideggerian thought and the concept of the “emotional situation” (Befindlichkeit), an intertwinement of passivity and opacity that characterize our existence. Following the Critique of Pure Reason, Husserl knew that boundaries (Grenzen) are different from barriers (Schranken): while the first constantly changes with the progress of the self, barriers are immovable and delimit every ‘possible’ experience: Limits [Grenzen] (in extended beings) always presuppose a space existing outside a certain definite place, and in closing it; boundaries [Schranken] do not require this, but are mere negations, which affect a quantity, so far as it is not absolutely complete. But our reason, as it were, sees in its surroundings a space for the cognition of things in themselves, though it can never have definite notions of them, and is limited to phenomena only. (Kant, 1997, p. 122, my italics)

Following this perspective, limit-problems lie where the ultimate space of ‘rationality’ is circumscribed: by encountering our limits, we do not find ourselves stuck, but we are called to constantly re-define our space of action and being. Therefore, limesfälle are considered Grenzfälle that we can potentially overcome (übergehen): the limit represents a point of passage. The Grenzprobleme describes a consciousness that is primarily factuality, practical existence, and materiality. Here, metaphysics becomes the science of the factual world. Husserl describes limit phenomena as the highest questions (die höchsten und letzen Fragen) of transcendental subjectivity understood, precisely, in its fundamental “humanity”. Differently, according to Plessner, every form of life can be defined through its limits (Grenzen): similarly, these pages, published in German only in 2014, contribute to creating what we could call a Husserlian “ontology of liminality”—where vulnerability seems to be the main structure of experience. Husserl argues that humanity is “veiled and cloaked with the sea of suffering” (verhüllt und bemäntelt mit dem Meer der Leiden, p. 406) because the innermost essence of the subject would be to continually struggle against events beyond the control of reason, such as pain, illness, and death. The latter, in particular, has a decisive function in characterizing man: according to Husserl, in fact, “Only a human being is a person and is not just a subject of action but also sees herself as a subject of an open

  “…die Grenzprobleme überschreiten”. 5

sind

jenen,

die

Grenzen

phänomenologischer

Deskription

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horizon of life and action, [only a human being] is permanently threatened by death as a rupture of this waking life and action and as an end which, in its indefiniteness, is merely an incessantly continuing, never-ending threat” (Husserl, 1988, p. 98).6 Death, in particular, obliges us to face our vulnerability and our essential, unavoidable finitude. As a psychophysical being, I experience death (and my fragility) by means of my meeting with the other:7 “I obtain… a sort of pre-figuration (Vor-Bild) of death starting from my intersubjective experience of the world: I am going to become ill, symptoms of illnesses lived from the inside as an anomalous internal life will appear, some malaise will make its appearance, a sort of awareness of [my] weakness, like the inability to move normally, to activate some familiar faculties, to collect my thoughts, I feel the failing of my consciousness…” (Husserl, 2014, Hua XLII, p. 2, my translation).8 Another dimension through which the transience of existence is expressed is contingency (Zufall): “Nature, relative to the individual and considered as its environment, is a world full of coincidences. By chance happens its birth, its education, its meeting with other people who have a significant influence on it and its life with other people”. (Hua XLII, pp. 285–286, my translation).9 The lability of our ontological structures (body and time) and the uncertainty of life mean that the subject’s essential and primary characteristic is nothing but its vulnerability. On page 213 of Grenzprobleme, we find an interesting word to describe this characteristic: Lebensendlichkeit or “finiteness of life”, indicating precisely the structural lability that connotes us. From this point of view, for Husserl “Leben ist Streben” (“Life is a struggle”): limit phenomena are intrinsic to human existence, which continually struggles using reason and faith to achieve balance and pursue self-preservation  As far as the Husserlian interpretation of death is concerned, the sentence “Das Ich stirbt nicht” may lead us to believe that the transcendental subject is not affected by the unfolding of time, even leading us to think that it is entirely immaterial or incorporeal (as a strict interpreter of the early Husserl might argue). However, it is worth pointing out that this statement has to do with the fact that the subject cannot experience death (as well as birth) through the first person perspective. In this sense, death exists but as a threat, an interruption, a danger (and indeed we often experience it as such, when it is thematized as ‘absent consciousness’). 7  In Roland Barthes’ Mourning Diary, where he talks about his mother’s death, there are some passages that express really well how we apprehend of our own finitude through others’ death, how experiencing the death of another and suddenly sheds light on our destiny with a new awareness: “Overcrowded gathering. Inevitable, increasing futility. I think of her, in the next room. Everything collapses. It is, here, the formal beginning of the big, long bereavement. For the first time in two days, the acceptable notion of my own death.” (Barthes, 2012, 12); “”Now, everywhere, in the street, the café, I see each individual under the aspect of ineluctably having-to-die, which is exactly what it means to be mortal”. (Barthes, 2012, 52). 8  “..erhalte ich zuletzt irgendein Vor-Bild des Sterbens aus meiner intersubjektiven Welterfahrung: Ich werde irgendwie krank werden, es werden Krankheitserscheinungen, von innen erlebt als anomales Innenleben, verlaufen, irgendwelches belbefinden, Bewusstsein der Schwäche, wie Unfähigkeit, in normalerWeise mich zu bewegen, meine vertrautenVermögen zu betätigen, meine Gedanken zu sammeln, ich fühle das Schwinden meines Bewusstseins …”. 9  “Die Natur ist relativ zum Individuum und als seine Umwelt betrachtet eine Welt voll von Zuf  llen. Durch Zufall ist er in sie hineingestellt, Zufall ist seine Geburt, seine Erziehung, das Zusammentreffen mit anderen, ihn und sein Leben wesentlich mitbestimmenden Menschen” (Hua XLII, 285). 6

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(Selbsterhaltung). Through limit-phenomena, we are able to embrace and accept our fundamental humanity. From a cultural perspective, being aware of one’s own finitude, vulnerability and belonging to a temporal becoming allows us to relate to other non-contemporary subjects, to recognize ourselves in them and in the works they have left us, in other words, to feel empathy even towards those who are not present but have nevertheless been subjected to an existence similar to our own (see Heinamaa, 2015). If we instead turn to an existential perspective, Husserl recognizes that, in spite of everything, despite and perhaps by virtue of its vulnerability, the subject acts: “In spite of everything I act, I do not let myself be paralysed. I leave behind me chance (Zufall) and fate (Schicksal), death, illness and the possible failure of my strength: I decide on the basis of the best knowledge, consciousness and possibility.”10 In other words, by recognizing my finitude, I am able to become myself.

4.3 Jaspers and “The Infinite Abyss of Reality” For man, his incompleteness, his openness, his freedom and interminable possibility itself become the cause of illness.11

In Jaspers’ work, the concept of limit-situation is mainly developed in Psychology of Worldviews (Psychologie der Weltanschaungen) and in Clarification of Existence (Existentenzerhellung), which is the second volume of Jaspers’ Philosophy (Philosophie). In his later works, Jaspers deals with the concept of ‘basic situation’ (‘Grundsituation’); this concept is not historically conditioned but instead characterizes human existence as it has always been—i.e. as a ‘rupture in being’—a search for unity that is doomed to fail time and time again (see especially Jaspers, 1973, 703–709). These basic situations denote the limits common to all persons; the limits against which the supposed wholeness and unity of Dasein collide. The following situations comprise these common limits: having to die, having to suffer, having to fight, being at the mercy of chance, and facing the inevitability of guilt. These situations, where we feel, experience, and think at the boundaries of our existences in general, we thus term “boundary situations.” What they have in common is that in the tangible world, always divided into subject objects, there is nothing stable and absolute that cannot be doubted, and there is no grasp point that could withstand every thought and every experience… These boundary situations, as such, are unbearable for life, and thus they almost never appear in complete clarity in our experiences of life, but indeed we almost always have a grasp point when facing boundary situations. Without it life would cease. (Jaspers, 1973a, p. 179)  “Trotz alledem, ich handle, ich lasse mich nicht lähmen, ich lasse Zufall, Schicksal, Tod, Krankheit, mögliches Versagen meiner eigenen Kräfte hintanstehen; ich will mich entscheiden nach bestem Wissen und Gewissen und Können” (Hua XLII, p. 286). 11  “Dem Menschsein ist seine Unfertigkeit, seine Offenheit, seine Freiheit und seine unabschließbare Möglichkeit selber Grund eines Krankseins”. (Karl Jaspers, Allgemeine Psychopathologie, 1973b, p. 8). 10

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These basic situations become borderline situations if they are transformed from mere generalities into distressing experiences for the individual. Limit situations uncover the basic conditions of existence. According to Jaspers, the very first limit situation lies in the fact that I find myself always in a specific situation that limits my possibilities (or what Gibson called “affordances”) in the world. Being born in a certain place and not in another, being a man or a woman, are all circumstances that direct us towards specific opportunities and chances.12 In this sense, it seems that “Experiencing limit situations and existing are one and the same” (Jaspers, 1973a, 204). The Dasein itself, and the fact that I am always in one specific situation, represents at the same time a limitation of my will, which brings out the existential guilt of always being beneath one’s possibilities and of not being able to realize one’s possible Existenz. But the inevitable sense of guilt also derives from the fact that everyone’s Dasein is a struggle, not only of having to exist in relation to others but of also having to do so in competition with them. The antinomic structure of existence that finds its expressions in limit situations is often the cause of the collapse of our “housing”, what Jaspers calls “Gehäuse”: our established structure of thought and attitude that usually offers protection from limits and security in the face of the existential troubles. We can claim that the housing is a sort of defense mechanism that breaks down when, in front of a limit situation, one’s vision of how life should be fails completely, or at least does so in some key respect: The conscious experience of the limit situation, which was previously concealed by the secure housing in the commonsensical forms of life, lets a process begin which brings the hitherto taken-for-granted housing to dissolution. Now it becomes more or less clear what the housing is, and this is experienced as attachment, limitation, without possessing the strength for offering a secure foundation. (Jaspers, 1925 p. 208)

In a limit-situation, the housing falls down, and our vulnerability comes to light: often, also our mental health deeply changes, the subject finding itself unable to cope with the antinomic structures of existence. Jaspers characterized limit situations by identifying their specific features: in fact, according to his analysis, limit situations do not change in their ontological structure, but in their manifestations; they are not fully understandable, and they exist together with Existez itself. We cannot change them for these reasons, but we have to admit their existence without the pretense of explaining or justifying them. “The limit situation [...] is like a wall, against which we come up against and against which we can do nothing. [...] Beyond it, in our existence, we see nothing. We cannot change it, only understand it clearly. […] It is part of existence. [...] We do not react to a borderline situation with plans and calculations to overcome it, but with a completely different activity, by fulfilling in ourselves the only possible existence: we become ourselves if we enter into it with open eyes” (Jaspers, 1973a, Existenzerhellung II, pp. 203 s).

 We can notice the similarity with Husserl, who emphasized how we depend upon Zufall (“chance”) and Schicksal (“fate”). 12

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So, how can we face limit-situations according to Jaspers? Like Husserl, he believes that fight13 is the fundamental form of our life, and that we need to face limit-situations to realize our own possibilities. Nonetheless, he underlines that we would be unable to overcome limit-situations by rational strategies, rather only “…through a totally other activity: the becoming of the possible existence in ourselves: we become ourselves, in that we enter the limit situation with open eyes” (Jaspers, 1973a, Existezerhellung). In order to reach this goal, Jaspers hypothesizes three “leaps” towards existence, that is to say, three steps through which we get into boundary-situations. 1. The first leap is from everyday life existence to universal knowledge: starting from my experience of liminality, I try to reach an objective universal knowledge. 2. The second leap is from contemplation to elucidation of potential Existenz: in other words, I realize that limit situations are essentially human situations. 3. The third leap is from existence as potential Existenz to the real Existenz. At this stage, Existenz represents the authentic self of man and, as it consists only of potentialities, Jaspers termed it “potential Existenz”: “The being of the self (Selbstsein) [can] therefore become conscious of existence through a leap: consciousness, which otherwise only knows limit situations, is realized in a singular, historical, and irreplaceable way” (Jaspers, 1973a, b, 204). This existential leap is only possible because limit-situations ‘as such are unbearable for life’ (Jaspers, 1925, 229). The person is always faced with the choice between accepting the opportunity or avoiding it through denial, rationalization, generalization, or repression. Therefore, Jaspers warns against any hasty attempts to make the limit-situation disappear: it is indeed important to resist the antinomian pressure. At the same time, however, acceptance and forbearance of a limit-situation can lead to paralysis, which can block responsible action if an existential decision, i.e. a ‘taking of Existenz’, fails. In this, a person decides on a course of action or life in the knowledge that, as a consequence, other possibilities of its will not be realized, and in the awareness of its own possible responsibility for unavoidable guilt (Jaspers, 1973a, 196). Accordingly, limit situations enlighten the paradoxical structure of existence, and they call for what has been named existential turn­up, i.e., to reach a higher level of self-awareness and depth of feeling in case the limit situation is mastered. Despite their different descriptions,14 both Husserl and Jaspers contributed to the inclusion of liminality within the definition of the ontological structure of person.

13  In analogy with Jaspers, we have seen how for Husserl “Leben ist Streben” (“Life is a fight”): liminal phenomena are intrinsic to human existence, which strives for a balance among them and tries to achieve self-preservation (Selbsterhaltung). 14  Husserl seems to agree with Jaspers, but he modifies this direction when he finds in Gods and theology the ultimate fulfillment of reason. In fact, he supposes that we can overcome contingency, death, misfortune and misery by living “im Glauben”: into faith (Husserl, 2014, Hua XLII, 217, 406). For an interesting analysis on the teleological character of limit-phenomena in Husserl, see De Santis, 2021.

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In fact, for both authors, limit-phenomena reveal being as such. Despite chance, I can—and I should—fulfill my own existence, grasp my ego, and become myself (Husserl, 2014, Hua XLII, 286).

4.4 Taking Care of Vulnerability What does it mean then to embrace our vulnerability? What value can there be in acknowledging our finitude? It is clear that coming in contact with the liminality of existence does not necessarily mean incurring serious illness or experiencing (albeit indirectly) death. As noted by Thomas Fuchs,15 we can argue that there are two kinds of liminal situations: pathologies (in particular, he refers to psychic ones) and healthy living. Consistently, then, with what Husserl described in Manuscripts XLII, we can argue that there is an ‘existential vulnerability’ from which we cannot escape but connotes us in our essence. Sometimes, this vulnerability, and the consequent clash with our liminality, can provoke psychopathological conditions (Fuchs, 2013; Irarrazaval, 2022): one thinks, for example, of the frustration of the hypochondriac, who is constantly faced with the dangers of existence and the fragility of her own body; of the sensitivity of the anorexic towards her bodily changes; of the vulnerability experienced by the narcissist when she thinks about the limitation of her possibilities. Accordingly, accepting vulnerability seems to be very important to recognize its presence beyond the limit-situations of physical illness and death and achieve an awareness that can save us from degenerating into the psychopathologies described above. This is extremely important in the contemporary context, dominated by a vision of subjectivity whose “well-being” is valued in terms of perfection, constant empowerment, self-affirmation, and lack of weaknesses. The definition of health provided by the World Health Organization states that this should be “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” (WHO, 2005), thereby denying any role to vulnerability. Nonetheless, as emphasized by Husserl and Jaspers, recognizing the liminality of experience and vulnerability as structural to the human ontology allows us to embrace our true being and live with greater awareness. Never before has it been so impossible to avoid acknowledging our transience. In recent years, as Elias observed in The Loneliness of Dying (1985), advanced societies, with the increase in average age and the advancement of medicine and technology, have begun to consider death  It is interesting to notice that Fuchs starts from the thought of Jaspers (a figure who has a great influence on his way of approaching and living psychiatry), who, as we have seen, argues that experiencing “limit situations”, i.e. situations that confront us with our essential finitude (such as pain, death, suffering, guilt, etc.) and existing are the same thing, because these situations allow us to see beyond the immanence of being, understand it and accept it. 15

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as something distant, the final moment of a very long process. Vulnerability has become almost a taboo, and the high level of individualization that is typical of our society has favored this process. In the last 3 years, however, the pandemic has confronted us with our own fragility: death has become something public and vulnerability something that unites us all and makes us co-dependent. Therefore, changing the definition of well-being is necessary, not only to accept liminality as something that constitutes us and brings us closer to others but also to overcome the stigma that accompanies those who are more vulnerable than others. For this reason, vulnerability should be included in the definition of humanity and used in the context of well-being, which excludes any reference to human frailty. According to the description given in these pages, we can therefore argue that vulnerability has different roles and values: ontological,16 as the essence of our being, constantly influencing our lives; epistemological, as boundaries that are necessary to know what something is and what is not17 and as something which constantly influences our lives; moral, as it can guide an ethical paradigm whose focus is on care (of oneself and others) and not on the achievement of perfection. Placing ‘existential vulnerability’ at the center of reflection implies considering illness as something that could happen to everyone; it means taking note of our essential and structural fragility, immersing oneself in an analysis of the person as such, and of the continuous efforts that he or she must make in interfacing with others and with the world. It means taking charge of a radical human condition (what Husserl describes as Lebensendlichkeit), in the face of which the very meaning of existence unfolds, a harbinger of values—of light and shade, of resonances and voids.

4.5 Conclusion The main aim of this work has been to describe vulnerability as an essential feature of our existence. In particular, my reflection took into account two thinkers: Husserl, the father of phenomenology, and Jaspers, the master of psychopathology. Comparing their reflections on liminality (or limit-phenomena) is significant to shed light on the fact that the practical, factical dimension should always accompany the philosophical reflection. Concerning Husserl, my analysis has emphasized how the described subject, especially in the latest manuscripts such as the Grenzprobleme, is far away from a pure, transcendental subjectivity detached from the world: the subject is the victim  According to Sellman (2005, p. 3) “vulnerability is part of the human condition; harm may come from many sources, and we are never entirely free from the possibility of being harmed”. My aim is to be even more radical: vulnerability is not a part of the human condition, but its essence. As Rilke drastically describes, since (and before) our birth we are already characterized by our inevitable finitude. 17  See in particular Bateson, 1972, especially the Metalogue “Why Do Things Have Outlines?”. 16

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of fate, chance, and limit-cases that it is unable to control or to experience directly, like death. Nonetheless, these experiences are unavoidable, and the subject can overcome them by living in faith. Jaspers replaces this theological dimension with an existential turn: he believes that it is indeed by facing limit-situations that we can embrace our own self. In both cases, liminality emerges as the essential, inescapable dimension of our being that we should accept and use to learn something about ourselves. The consequences of a similar vision are important and comprise different dimensions: ontological, epistemological, and ethical. Arguing for the necessity of vulnerability means to re-shape the definition of major categories, such as subjectivity, health, and wellbeing. It means to find, in liminality and limit-phenomena, the richness of our existence, not something which we should necessarily avoid. And finally, it means to realize that, instead of looking for perfection, we should ask ourselves, as Jaspers and Husserl did, whether a being can shine from the depths of darkness.

References Barthes, R. (2012). Mourning diary. Hill and Wang. Bateson, G. (1972). Steps to an ecology of mind. Chandler Pub. Co. Behnke, E., Husserl, E.: Phenomenology of embodiment. In Internet encyclopedia of philosophy. http://www.iep.utm.edu/husspemb/ De Santis, D. (2021). Problemas límite de la fenomenología trascendental: Teología, generatividad, absoluto. In A. Serrano de Haro (Ed.), Guía Comares de Husserl (pp. 237–255). Còmares. Elias, N. (1985). The loneliness of dying (E.  Jephcott, Trans., p. cm). Originally published: B. Blackwell. Fuchs, T. (2013). Existential vulnerability: Toward a psychopathology of limit situations. Psychopathology, 46(5), 301–308. Heinamaa, S. (2015). The many senses of death. Phenomenological insights into human mortality (Studies across disciplines in the humanities and social sciences 19) (pp. 100–117). Helsinki Collegium for Advanced Studies. Husserl, E. (1913). Ideen zu einer reinen Phänomenologie und phänomenologischen Philosophie. In Jahrbuch für Philosophie und phänomenologische Forschung, 1 Halle a.d.S. Husserl, E. (1952). In Z. Buch & hrsg. (Eds.), Ideen zu einer reinen phänomenologischen philosophie. Zweites Buch, Von Marly Biemel, Martinus Nijhoff. Husserl, E. (1988). Aufsätze und Vorträge, 1922–1937. Eds. Nenon, T, and Sepp, H. R. Dordrech, Boston, London. Kluwer Academic Publisher. Husserl, E. (2014). Grenzprobleme der Phänomenologie. Analysen des Unbewusstseins und der Instinkte. Metaphysik. Späte Ethik. Texte aus dem Nachlass (1908–1937), Hua 42. Springer. Irarrazaval, L. (2022). Human vulnerability: A phenomenological approach to the manifestation and treatment of mental illness. Journal of the British Society for Phenomenology. https://doi. org/10.1080/00071773.2022.2048958E Jaspers, K. (1925). Psychologie der Weltanschauungen, dritte Auflage. Springer. Jaspers, K. (1973a). Philosophie II, Existenzerhellung, vierte Auflage. Springer. Jaspers, K. (1973b). Allgemeine Psychopathologie, neunte, unveränderte Auflage. Springer. Kant, I. (1997). Prolegomena zu Einer Jeden künftigen Metaphysik, die als Wissenschaft Wird Auftreten Können [1783]. In G. Hatfield (Ed.), Prolegomena to any future metaphysics that will be able to come forward as science. Cambridge University Press.

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Minkowski, E. (1970). Lived time: Phenomenological and psychopathological studies (N. Metzel, Trans.). Northwestern University Press. Rilke, R. M. (1997). Die Aufzeichnungen des Maltes Lauridis Brigge. Reclam. Sellman, D. (2005). Towards an understanding of nursing as a response to human vulnerability. Nursing Philosophy, 6(2005), 2–10. Toombs, S. K. (1992). The meaning of illness. A phenomenological account of the different perspectives of physician and patient. Springer Science Business Media. WHO. (2005). Constitution of the World Health Organization. In World Health Organization (Ed.), Basic documents (45th ed.). World Health Organization.

Chapter 5

Why Does Mental Illness Exist? Reflections on Human Vulnerability Thomas Fuchs

Madness is a possibility of man without which he would not be what he is: a presence whose essence is to exist, which means being his own possibility. Henry Maldiney (1973, 210 (own transl.)) The incompleteness and vulnerability of human beings and their freedom and infinite possibilities are themselves a cause of illness. Karl Jaspers (1963, 8)

5.1 Introduction The question of why mental illness exists can be answered in various ways. One can point to genetic conditions or neurobiological dysfunctions, to formative childhood experiences, traumatization, unconscious drive conflicts and corresponding symptom formation. Or one can blame social conditions such as the lack of material and emotional resources, exclusion and discrimination experiences, loneliness or migration. The forms of causal conditions for mental illness are almost impossible to survey. The situation is different, however, if the question is posed from the perspective of philosophical and psychiatric anthropology. Then the question is no longer about the special causes of certain disorders, but more fundamentally about the conditions that make it possible for people to become mentally ill in the first place. In other words: What is it about the psychophysical organization of human beings that makes them so obviously susceptible or vulnerable to mental illness?

T. Fuchs (*) Department of Philosophy & Psychiatry, Heidelberg University, Heidelberg, Germany e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 E. Boublil, S. Ferrarello (eds.), The Vulnerability of the Human World, Philosophy and Medicine 148, https://doi.org/10.1007/978-3-031-41824-2_5

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The fact that persistent mental disturbances are not observed in free-living animals speaks for an anthropological vulnerability, i.e. a specific psychological endangerment of humans. Observations of abnormal behavior in animals mostly concern zoo animals or pets; animal models of depression are also based on experimentally induced helplessness (Seligman, 1975). Granted, in higher mammals, deprivation, trauma, defeat, or social exclusion may lead to behaviors such as withdrawal, anxiety, lethargy, or apathy (Keehn, 1982; Meyer-Holzapfel, 1996). However, these are only reactive disorders, mostly of a temporary nature. Obsessions, manias, psychoses, hallucinations or delusions do not occur in animals. Last but not least, the possibility of suicide is exclusively given to humans. Because in order to decide against one’s own life, one must have a relationship to this life and to oneself; one must see it as a whole, evaluate it and be able to prefer death to it - which is obviously not possible for animals, because even in hopeless situations no animal takes its own life.1 This is a first evidence for the assumption that the possibility of mental illness is obviously connected to the higher degrees of freedom in the psychophysical organization of humans. Thus the quotation from Karl Jaspers at the beginning of the chapter can serve as a leitmotiv for the following considerations. The question is to what extent the human condition itself contains fault lines, antinomies and inescapable conflicts which, under certain conditions, can lead to overtaxation, decompensation and finally to mental illness; and to what extent it is precisely the particular degrees of freedom of the human being which necessarily go hand in hand with a lability and fragility of his psyche. In the following I will first ask for the reasons of the anthropological vulnerability for mental illness and locate it above all in the special openness, variability, but also contradictoriness of the human being’s form of life. In the second part, I will interpret this disposition to mental illness also as an existential vulnerability, namely as a special sensitivity to the conflicts and contradictions of existence that people predisposed to mental illness show. This vulnerability makes them susceptible to certain situations, namely limit situations, in which these contradictions become unavoidable and lead to decompensation and eventual illness.  The assumption of a qualitatively relevant difference between humans and animals has meanwhile so many opponents – whether among evolutionary biologists, primatologists, representatives of animal rights or others – that this statement will meet with opposition. People will cite anecdotal examples of whales, dolphins, chimpanzees, or elephants that allegedly sought death or at least abandoned themselves to it out of helplessness, lethargy, grief, or similar motivations (see, e.g., Peña-Guzmán, 2017, or in review Preti, 2007). A detailed discussion of this question would require a separate study. Here, it should only be countered that all the examples given never involve anything like suicidal preparations and deliberate suicidal acts, but only situations in which the primary survival impulse fails and the animal no longer offers any resistance to the approaching death. Apart from the fact that this by no means also implies the imagination of imminent death, such situations certainly do not constitute suicides in the sense of the word. The deadly migrations of the lemmings, which are often quoted, are based on a migration instinct, which leads to blindly straight herd movements of the animals in case of overpopulation, even if rivers and lakes are in front of them. Finally, the not infrequently observed stranding of whales is probably due to a disturbance of the sense of orientation. 1

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5.2 Anthropological Vulnerability Let us first consider the special circumstances of the psychophysic organization and ontogenesis of man; we shall see that they are at the same time conditions of the possibility of aberrations and mental illness.

5.2.1 Lack of Instinct and Openness of Development In the first place, there is the lack of instincts and of fixed behavioral schemes which has already been emphasized by German philosophical anthropology, in particular by Max Scheler (1928) and Arnold Gehlen (1940), but also by Jaspers: In contrast with animals, man lacks an inborn, perfected pattern of adaptation. He has to acquire a way of life as he goes along. Man is not merely a pattern, he patterns himself. (Jaspers, 1963, 8)

The behavioral schemes of animals are far more determined by their genetic makeup and physical organization. Humans, on the other hand, do not move along fixed reaction paths and must first gradually acquire their behavioral certainty. This is accompanied by the particular openness and freedom of their individual development. Man is, in Nietzsche’s words, the “non-determined animal” (Nietzsche, 1954, III, 61), or as the biologist Adolf Portmann (1944) put it, a “physiologically premature infant”. His biological endowment is immature at birth; it is only by early socialization, by acquiring patterns of interaction, the upright gait and language through contact with others that he becomes human in the full sense. This is connected to the unique plasticity of the human brain whose cortex is still undeveloped at birth. The prefrontal cortex as a basis of crucial capacities such as perspective taking and moral development only matures until up to the 25th year of life. The human brain thus displays a unique potentiality, which it cannot realize by itself, however, but only through cultural socialization.2 Human behavior is determined to a large extent by cultural schemes and roles which replace the instincts. Culture, and the habitus as the totality of roles and habits which it mediates, unburdens human beings from the task to plan each action separately and to create themselves at will, so to speak. But culture, too, leaves humans still incompletely determined, and here lies their individual freedom of choice. Humans do not only live, but they lead their lives, and by this, they also form themselves; through their decisions and actions, they shape their own development. This openness may be interpreted in an optimistic way, such as in Pico de la Mirandola’s famous treatise “On human dignity”, where God says to man: Thou, constrained by no limits, in accordance with thine own free will, in whose hand We have placed thee, shalt ordain for thyself the limits of thy nature (…) so that with freedom of choice and with honor, as though the maker and molder of thyself, thou mayest fashion thyself in whatever shape thou shalt prefer. (Pico de la Mirandola, 1486/1951, 3)  On this, see Fuchs (2018), pp. 205ff.

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On the other hand, this openness to development entails manifold possibilities of disturbance. The success of the development of humans is more precarious, their way of life more endangered than is the case with the fixed life forms of animals. This flip side of openness is particularly manifest in the human disposition to anxiety and fear, which are also one of the most frequent manifestations of psychological disorders.

5.2.2 Angst as “Dizziness of Freedom” As in animals, human fear initially has a biological function in the sense of a warning system that mobilizes the organism’s readiness to flee or defend itself in the event of danger. Because of their prematurity, humans are exposed to particular dangers from birth on; accordingly, Freud saw the primary root of the neurotic readiness to fear in the “the long period of time during which the young of the human species is in a condition of helplessness and dependence” (Freud, 1949, 139). Fear fulfills an important function in the biologically based attachment system (Bowlby, 2006) by indicating the loss of the mother’s closeness and thus of the security that is vital for the infant. Similarly, the anthropologist Bilz (1971) emphasized the primordial “fear of disgregation”, i.e. being separated from the grex or herd, which was indispensable for survival in a hostile environment. To be abandoned, exposed or expelled was equivalent to a death sentence and triggered massive alarm reactions. The feeling of abandonment in empty space, characteristic of agoraphobia and panic attacks, still reflects their frequent triggering by separation situations or other losses. In the course of cultural development, however, the primary, survival-securing function of fear receded more and more into the background. Instead, fear increasingly took over the role of a reaction of the individual to social and existential dangers, for which the original physical alarm is of only limited use. Thus, cultural development is based on a system of drive controls and denials that are internalized by the individual, secure life in the group, and compensate for the absence of instincts. However, as Freud has shown in “Civilization and its discontents”, this occurs at the price of Angst, which is installed, as it were, as an inner guardian of self-control (Freud, 1961, 135). Human fears then apply to threats to self-worth or to one’s own status in the group – i.e. fear of failure or disparagement. But they are also directed at a possible punishment up to the threatening loss of the protection of the group through exclusion and expulsion. “Conscience [...] in its origin is ‘social anxiety’ and nothing else” (Freud, 1957, 280), and the fears of conscience are known to be a rich reservoir for neurotic developments. The conflicts between egocentric needs and the social imperatives of the community are thus inherent in the human being. They are also, whether they are carried out externally or transferred into the subject, the most frequent occasions for anxiety and for clinical anxiety disorders. However, anxiety

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can also detach itself from concrete occasions and transform into a free-floating basic anxiety (Fuchs & Micali, 2013). Humans’ readiness to fear is further increased by their ability to imagine and anticipate the future, which allows them to anticipate possible dangers – illnesses, losses, separations, hardship – in their imagination. And only for the human being the perspective of time extends beyond the near future to the possibility, indeed the inevitability of one’s own death – a basic condition of existence, the importance of which for failed attempts at compensation and for mental disorders can hardly be overestimated (Meyer, 1979; Fuchs, 2003). With the awareness of death, the field of manifold existential fears opens up, and the concern for one’s own life becomes, as Heidegger showed, a fundamental structure of existence. The fact that to humans, life is not just given, but also a task and a project, means a higher, namely existential endangerment. It can manifest itself in the fundamental fear of the risk or failure of one’s own life, which arises in the face of an open scope of possibility – in Kierkegaard’s famous formulation: Anxiety may be compared with dizziness. He whose eye happens to look down the yawning abyss becomes dizzy. But what is the reason for this? It is just as much in his own eye as in the abyss, for suppose he had not looked down. Hence, anxiety is the dizziness of freedom, which emerges when […] freedom looks down into its own possibility, laying hold of finiteness to support itself. Freedom succumbs to dizziness. (Kierkegaard, 1844/1981, 60; own transl.)

As the one caught by vertigo clings to the rock above the abyss, so a dizzying abyss of possibilities opens up to freedom, the choice of which must be made in uncertainty and ultimately groundless self-determination. Human beings can miss their goals and values through their own decisions, take too high or too low a risk; only human life can fail. Angst is the price for the scope of freedom, which is opposed to the necessities of animal life; and it is the price for the awareness of one’s own life and thus also of death. On the other hand, this basic conflict only appears in its precarious form when the individualization of society has reached a degree such as in modernity: only when individuals are faced with the task of having to lead their lives independently of traditional ways and guidelines can the “vertigo of freedom” befall them. Kierkegaard’s analysis of freedom would hardly have been conceivable in antiquity or in the Middle Ages. We see here how a general anthropological vulnerability becomes actually relevant only under certain historical and social conditions.

5.2.3 Eccentric Positionality Closely linked to freedom is another basic condition of human existence, which the philosopher Helmuth Plessner (1928/2019) has called eccentric positionality. While the animal is bound to its respective environment and always remains in its center, humans are able to step out of this center, as it were, and to take the perspective of

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an observer, and that means to see themselves through the eyes of others. This characterizes their “eccentric” (moved from the center) position. They acquire it with the development of self-consciousness and reflexivity in the 2nd and 3rd year of life (Fuchs, 2013a). In this phase, the children become aware of themselves as an independent being, recognize themselves in the mirror, learn to say “I,” to distinguish themselves from others, and to develop a relation to themselves. In this way, human beings become persons in the full sense, namely insofar as they become aware of themselves as persons among other persons. Self-consciousness and reflexivity are certainly crucial for humans and their cultural achievements, but they also come at a price. First, the immediacy and spontaneity of the infant suffers a break; it manifests itself in self-reflexive emotions such as embarrassment, pride, shame, and later in the feeling of guilt. Shame and guilt may be regarded as emotions in which the gaze and the voice of the other are bodily felt, as it were, namely as shaming gaze or as accusation or condemnation (Fuchs, 2002). But the vulnerability that accompanies the eccentric position goes even further. Psychopathologically, the lability of human self-relation and self-worth is manifested, for example, in histrionic, narcissistic, depressive disorders or in social phobias: All of these disorders presuppose the ability of perspective-taking, i.e., the self-perception and self-evaluation from the point of view of others, before whom the self may appear seductive, grandiose, inferior, or excluded. The contradictory doubling of the human self-relationship is already prefigured in the concept of the person: It is derived from the Greek prosopon, Latin persona, which originally meant the actor’s mask in ancient theater, later the role someone plays in society, and finally the individual, that is, the wearer of the mask himself. Seeing oneself through the eyes of others results, to use G. H. Mead’s terms, in the dialectic of “I” and “me”: whether in conflict or in temporary congruence, “I” and “me,” inner and outer perspective are always in tension with each other and yet are interconnected (Mead, 1934). The person is thus a “homo duplex”3 – apart from rare states of unreflected spontaneity, there is no pure immediacy beyond childhood. Playing one’s own role in society necessarily implies an “as if,” a dialectic of being and appearance, and there always remains a final inner distance to the role one assumes. Likewise, the ability to reflect is not only a gift, but also carries the seeds of alienation or disturbance. In the excessive ruminations of depressive patients, in the obsessive thoughts of anankastic or schizophrenic patients, thinking takes on a life of its own as an empty circle of thoughts, without the affected person finding a way out of the torturous spirals of reflection. There is a veritable psychopathology of hyperreflexivity, of excessive consciousness, which only humans can develop

 This expression was first used by Buffon in his Discours sur la nature les animaux – homo duplex (1753) and led to a prolonged debate on the relationship between the “homme physique” and the “homme moral”. It was later taken up again by Emile Durkheim (1914/1981) to characterize the ambivalent nature of the individual between private and public existence. 3

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(Fuchs, 2011). Reflection actually serves “trial action,” as Freud put it,4 i.e., playing through possibilities of action with the aim of resuming an interrupted enactment of life. However, it can also become entangled in itself and then no longer reach reality, as in a schizophrenic patient of Hesnard: If a thought passed quickly through his brain (…), he was forced to direct back his attention and scrutinize his mind in order to know exactly what he had been thinking. In one word he is preoccupied by the continuity of his thinking. He fears that he may stop thinking for a while, that there might have been “a time when my imagination had been arrested” (…) He wakes up one night and asks himself: “Am I thinking? Since there is nothing that can prove that I am thinking, I cannot know whether I exist.” (Hesnard, 1909; cited in Parnas & Handest, 2003)

Unlike in Descartes, here it is about an existential doubt, namely about the fear of the downfall of the self, which the patient tries in vain to banish by constant self-­ observation. Once doubt has penetrated the innermost part of the subject, even the Cartesian certainty of “I think, therefore I am” is of no help. Human self-relation makes this radical doubt possible, and the reflection becomes an endless loop. The psychopathology of hyperreflexivity also includes obsessive-compulsive neurosis. It results from an excess of the drive and affect control that is given to humans by his self-relation. The fear of the uncontrollable, insubordinate parts of the self leads to their rigid defense in the form of manifold rituals of self-­disciplining and control, in which life becomes more and more fixed. The following example comes from Viktor Frankl, who also developed the technique of “dereflection” for the treatment of such disturbances: A 21-year-old, perfectionist patient, always top pupil and best in the class, began a career as an accountant after graduating from high school. He soon noticed, however, that his writing was not always legible. When his boss made him aware of this, he tried to improve it and sacrificed all his time to learning to write well. He tried to copy letters from his friend’s handwriting, but soon no longer knew which letters to use or how to write. Concentrating only on his handwriting, he eventually became unable to write in front of others, felt observed by them, and finally had to give up his job. In the clinic, it was possible to cure the disorder within three weeks by setting the paradoxical instruction: “I’ll smear something on him, I’ll write only to smear, only to get stuck 30 times”. (Frankl, 2007, 198)

We see here how the hyper-reflexive attention to the enaction of writing leads to a dissolution of the self-evident doing, reinforced by the fear and shame of others. “Too much consciousness” is harmful, one could say; one then sees only the details, no longer the whole. The obsessive-compulsive, perfectionistic person, once he has left the self-evident, does not find his way back to it. He wants to do everything deliberately and cannot let anything happen for fear of letting himself go and losing control. The paradoxical intervention consists in doing exactly that, namely in uncontrollably “smearing something on the boss”, and thus at the same time works

 Strachey’s translation renders “Probehandeln” as “experimental kind of acting” (for example, Freud, 1958, 221); however, “trial action” seems more appropriate and also mostly used in the literature. 4

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with the repressed rebellious parts of the patient. By this means, the “crump of reflection” is dissolved. Similarly, the various forms of depersonalization or self-alienation can be understood as an expression of the fundamental brokenness that characterizes the human being: namely, as a being who, through self-consciousness, also distances himself from his primary self-experience. In this, there is undoubtedly a gain in freedom; however, in the experiences of alienation the distance from one’s primary sense of self can also take on a tormenting character. The disturbance of self-feeling permeates all domains of experience, as in the case of a schizophrenic patient: I constantly have to ask myself who I actually am (…). I think about that so much that I cannot do anything else. As if you were a totally different person all of a sudden. (de Haan and Fuchs, 2010, 329)

A human being’s relation to oneself makes such radical self-doubt possible, and reflexion becomes an empty loop. The loss of a sense of self can go so far that adopting the perspective of others leads to confusion, and the demarcation between self and other dissolves, as in schizophrenia: A young man was frequently confused in a conversation, being unable to distinguish between himself and his interlocutor. He tended to lose the sense of whose thoughts originated in whom, and felt ‘as if’ the interlocutor somehow ‘invaded’ him, an experience that shattered his identity and was intensely anxiety-provoking. When walking on the street, he scrupulously avoided glancing at his mirror image in the windowpanes of the shops, because he felt uncertain on which side he actually was. (Parnas, 2003)

Here, taking an external perspective on oneself leads to a loss of self: If one’s body-­ centered self-perception has become fragile, as is the case in schizophrenia, it can no longer be asserted vis-à-vis the consciousness of others or even one’s own mirror image. This can eventually lead to delusions of being persecuted or manipulated by others. Delusion can thus be understood as an excess of perspective taking, i.e., as a specific failure of the eccentric position (Fuchs, 2020): The assertion of one’s own intentional standpoint fails, and the patient is overwhelmed by the perspectives of others. Thus, it is precisely the ability of humans to constitute a common lifeworld by sharing perspectives that makes them also vulnerable to losing this lifeworld. This confirms Maldiney’s sentence quoted at the beginning: “Madness is a possibility of man without which he would not be what he is.”

5.2.4 Subject and Object Body Finally, only for a human being, one’s own lived body (Leib) becomes the observable corporeal body (Körper), an instrument or object that one may shape or handle, which nevertheless is the body that one is, to which there is thus an ambivalent relation. “The human being is his body and at the same time, in reflecting upon his body, he stands outside it”, as Jaspers (1963, 354) put it. The anxious hypochondriac observation of one’s body, heart phobia, dysmorphophobia as well as eating disorders all have their anthropological foundation in this ambivalent relation:

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Delivered to the autonomy and contingency of their body, the patients nevertheless try to control, to dominate or to manipulate it. Thus, the hypochondriac has lost confidence in his natural bodily processes and seeks in vain to control the reliable performance of his body through medical monitoring. By means of his suspicious self-observation, he even reinforces unusual bodily sensations that he then interprets as threatening symptoms. That is how a patient of mine was frightened by a tumor that might cause him to lose his eyesight. He was constantly observing his ability to see and registered his ocular sensations in a tense manner, thus evoking only additional tensions, negative feelings, and tear secretions. Thus, his attention was typically directed away from the world and back on himself, from the seen to seeing, as it were, to the eye itself.

However, the loss of trust in one’s own body is already founded in a reflexively gained knowledge, namely in the awareness that as a bodily being one is fundamentally susceptible to illness and mortality, so that every banal pain could in principle already announce the possibility of fatal illness. As sensitive as the hypochondriac is for the vulnerability of his bodily existence, as unbearable it is for him at the same time. He therefore tries to banish the ever-present danger of illness and death by anxiously observing all bodily processes. The hypochondriac claims absolute control of the body and yet cannot deny the fact of illness and death. Hypochondriac neurosis becomes an often lifelong struggle against a basic condition of existence that cannot be recognized and accepted, namely its mortality. While hypochondriacal preoccupation with one’s own body often bears almost autoerotic traits, for anorectic patients the body becomes an alienated, even repulsive object (Fuchs, 2022). I was disgusted by myself, by my stuffed body. (...) The taste of rotten eggs rose up in me. I imagined how everything in me must now have gone into a rotting process (Graf, 1985, 49; own transl.).

To be in total control of the body, to gain independence from it and from food, becomes the source of a grandiose triumph. “I don’t feel hungry, I have no desire”— for the patient this means: I am self-sufficient and no longer need anything from outside. It was as if I had to punish my body. I hated and detested it. If I let it be normal for a few days, then I would have to deprive it again. I feel caught in my body – as long as I keep it under rigid control, it can’t betray me (Kaplan, 1984, 278).

Here the tension between being a body and having one’s body, which is part of the human condition, becomes a radical dichotomy which is reminiscent of Platonic or Gnostic ideas of the body as a prison of the soul. Again we recognize the anthropological brokenness as a basis of the illness – no animal would voluntarily starve its own body, for it only is its body, it does not have it. On the other hand, anthropological vulnerability is only one of the preconditions for anorexia; for without the cultural influence of an overly slender body ideal and a questioning of the female role, the appearance of the disorder in late modernity cannot be explained (Fuchs, 2022). Again, the fundamental vulnerability of the bodily self-relationship manifests itself only under certain social and cultural conditions.

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5.3 Existential Vulnerability We have seen that the fundamental conditions of human existence are connected with a lability and contradictoriness which entails a vulnerability to mental illness, and I have given some examples of this on the basis of anxiety, compulsion, alienation, hypochondria, and eating disorders. I now want to complement these considerations with the notion of existential vulnerability (Fuchs, 2013b). In a sense, this refers to the subjective side of anthropological vulnerability. It consists in a specific sensitivity for the contradictions of human existence which is found in mentally ill patients – Holzhey-Kunz (1994) also speaks of a “clairaudience”. We all live under these basic conditions, we may also suffer from the contradictions, for instance, between autonomy and dependence, freedom and security, zest for life and certainty of death. But mentally ill persons suffer from this in a special way, such that for them, even quite everyday situations of danger, conflict or loss may become limit situations in the sense of Jaspers (1925). These are situations in which a hitherto concealed or repressed basic condition of existence comes to light and may no longer be denied – for instance, the inescapability of freedom and decision, the inevitability of separation or guilt, the frailty of one’s body, the fundamental loneliness of existence, and finally its inexorable finitude. “In each limit situation”, says Jaspers, “the ground is drawn away from under my feet” (Jaspers, 1925, 249). Something gets broken, which Jaspers calls the “housing” (Gehäuse). Housings are fixed basic assumptions, expectations, attitudes and world views which provide shelter against the contradictions and impositions of life. One could also call them existential defense mechanisms. If we interpret Jaspers’ “housings” from a psychopathological point of view, we can also include implicit, unquestioned and self-evident assumptions about life, the self, and the world – assumptions that hide or deny the contradictions of existence, such as the following: 1. The world is set in a fundamentally just manner. If I only strive enough and do nothing wrong, this will finally be rewarded (depressive defense). 2. If I subordinate to others, I can count on their shelter and guidance (dependent defense). 3. If I do everything in a perfect way, life is under my control and I cannot be taken by surprise. Fate cannot harm me (perfectionist/anankastic defense). 4. If I move up, and achieve more and more, I will be invulnerable and death cannot affect me (narcissistic defense). Such basic assumptions often follow the pattern that “there cannot happen what must not to happen.” Evil, injustice, coincidence and death may exist, but they cannot affect me; I haven’t done anything, I am innocent, or I am special. Different personality structures  – dependent, avoidant, anancastic, narcissistic  – are thus characterized by different existential defense mechanisms. They each represent an attempt to exempt one’s own person from the general conditions of human existence.

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A particular housing is found, for instance, in the Melancholic Type, the personality found by Tellenbach (1980) to be vulnerable to severe depression. Its characteristic features are rigid orderliness and fulfillment of duties, conscientiousness, over-adaptation to social norms, clinging to social bonds to the point of self-denial and scrupulous avoidance of any norm violation or guilt. However, this rigid housing of attitudes finally proves precarious. If such persons once fall short of their duties, if they experience unjustified rejections or the loss of significant bondings, then their world literally collapses. They find themselves in a limit situation, and a severe depression may be the result. I give a case example from my own practice: A 58-year-old woman fell ill because she tortured herself with the decision of whether she should sell her house, which had become too large for her after the death of her husband. Influenced by advice from friends and family, she in the end sold her house. However, she soon experienced a serious crisis in which she bitterly regretted her decision and finally fell into a deep depression. She then complained relentlessly about her wrong decision; she was convinced that she had suffered an irreparable financial loss and had irreversibly damaged her children. In the further therapy, it came to light that two aspects of her decision were particularly unbearable for the patient: first, its irreversibility, which was connected with the death of her husband, with whom she had lived in the house for over 20 years; second, it was the first time that she had made a life-changing decision without her husband, which revealed her unavoidable personal responsibility.

As is typical of the Melancholic Type, the patient was particularly sensitive to the existential dimension of her decision, namely the irreversibility, the personal responsibility, and the loneliness tied up with it. Her housing was literally incorporated in her house, and collapsed with its sale. Generally, the descent into depression is a response to an experience in which the futility of all avoidance and safeguarding strategies is revealed. Despite all precautions, the patients cannot escape the burden to lead their lives without a last security. The inescapable insight that one has built on sand, so-to-speak, finally leads to the decompensation. I give a further case example of this breakdown: Soon after his retirement, a 64 year-old patient fell ill with a severe depression. He came from a poor background and a sickly family of which he reported somewhat contemptuously. He himself had worked up the ladder to become staff executive of a big company by hardest work and utter ambition, at the price of neglecting his family and partnership. He had only been on sick leave for 10 days in 45 years of work. In contrast, his depression, triggered by the extraction of three teeth, was characterized by a feeling of decay. He accused himself of being responsible for the failure of an important deal of his company two years ago which would inevitably lead to its bankruptcy. He would never be able to cancel this debt again. He had burnt the candle at both ends and now he deserved to get his retribution. He finally thought that the death sweat already appeared on his forehead. He should be driven in the mortuary in the basement and left to die there.

The patient’s life plan was characterized by a rigid achievement orientation at the expense of human relationships. However, the retirement ended the lifelong narcissistic upward movement, and the tooth removal brought the patient all at once to the awareness of the vulnerability of his existence, which he had always repressed and despised in others. The fall into depression was the answer to an experience in

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which the previous housing suddenly turned out to be a deceptive appearance; the patient could not cope with this limit situation. Against this background, the depressive delusion appeared as an overpowering by the shadow side of his existence: aging and illness, guilt, omission, and death. The persistently denied but latently feared basic condition of life became unescapable, and this limit situation led to the depressive collapse.

5.4 Conclusion Psychiatric anthropology asks about the specific vulnerability of the human mental organization: What are the preconditions for people to become mentally ill in the first place? What are the possibilities of derailment of the psychic structure? Under which fundamentally problematic conditions does man have to lead his life, so that the task of existence can also overtax him? Answers to these questions allow a deeper understanding of the existential contradictions and conflicts with which especially mentally ill people are confronted and from which they suffer consciously or unconsciously. I have examined various components of this vulnerability, first and foremost the particular openness, insecurity and contradictoriness of the human life form. This insecurity starts with its “physiological prematurity”, which opens the unique scope for human cultural and individual development. To the extent of its openness, however, this development is also precarious and endangered. The lack of predetermined instincts and behavioral schemes requires complex learning processes and attunements with the norms, roles and demands of society  – learning processes which depend on supportive environments, and which may also deviate and fail. The eccentric position, which the child then acquires in the course of socialization, signifies the peculiar human capacity of perspective-taking, of self-­ consciousness and reflexion. But precisely what makes us human is also what bears the seed of an alienation and self-contradiction, namely between drives and drive control, between lived and object body, between self and others. The alienation may culminate in depersonalization or even the loss of boundaries between self and others in schizophrenia. Add to this the inevitability of guilt, the non-transferable freedom of being oneself, or the embarrassing awareness of one’s limited capacities and possibilities. Last not least, the knowledge of finitude and death is a hardly bearable companion of humans. It requires manifold denials and repressions, but also leads to overcompensation or avoidances, ultimately to a failing self-realization. However, we have also seen that general human vulnerability often emerges only under certain social and historical conditions that are likely to exacerbate the aforementioned contradictions. I have shown this by the example of the fear of freedom and the conflict of corporeality in anorexia. In particular, individualization and the increased demands for self-realization and self-optimization in modernity increase the possible “extent of the dramatic hero’s fall”, to use a comparison with theory of

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drama. The individuals are increasingly faced with the danger of reaching borderline situations that they are no longer able to cope with. The subjective side of the anthropological vulnerability is what I have termed existential vulnerability. Mentally ill patients are particularly sensitive to the basic conditions of life and try to protect themselves by a specific housing, or a rigid defense structure. Clearly, it is usually not a philosophical insight into the human condition which brings about such a defense. Rather, it is fundamental affects, existential feelings and moods that arise from the basic conditions, which implicitly confront the patients with the hidden truth of their existence: angst, feelings of guilt, shame, nausea, emptiness, boredom, or feelings of foreignness and alienation. Existentially vulnerable persons sense the abyssal meaning of these affects and moods more than others and try to protect themselves by a specific housing, a rigid defense structure against basic situations which are too threatening for them. These are the randomness and unpredictability of life; the lack of justification of one’s own existence; the inevitability of guilt; the unjustifiable freedom of being oneself; and the shameful limitation of one’s own abilities and possibilities. Yet, the housing only provides an illusive security. Limit situations lead to its breakdown and confront the person with the contradictions and impositions of life. Once they may no longer be denied, they may become occasions for serious psychological crises or illnesses. On this existential background, psychotherapeutic approaches will not restrict themselves to contribute to short-term relief and recovery of working ability. Rather, they will use the limit situations as possibilities of leading the patients towards a greater openness for their existential conflicts and, if possible, to recognition and acceptance of the precarious and limited conditions of human condition. It will support them in recognising their existential defense mechanisms with their basic assumptions, questioning them and finding a new, self-responsible form of life. For the different personality types I mentioned, this existential therapy will go in different directions. But in principle it is always about taking on the basic human situation that has been repressed: –– For the anancastic patient, this is the fundamental vulnerability and unpredictability of the world; –– For the melancholic type it is the insight that they cannot expect any final justification for their existence and that their rigid fulfillment of standards and duties cannot replace their own identity; –– Similarly, for the dependent personality it is the necessity of self-choice and the unjustifiable freedom of choice; –– for the narcissistic personality, finally, it is about the acceptance of one’s own limitations, ordinariness and finiteness. It seems that a major task of psychiatrists and psychotherapists lies in acquiring an understanding of these basic conflicts. In this way, they can help patients recognize the existential implications of their crisis and to understand it not only as a self-­ caused misfortune, but as manifestation of the basic human condition, in which we all participate, and from which we all suffer. For, to slightly vary a famous quote of Terence, “we are humans, and nothing human is alien to us.”

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Chapter 6

Well-Being, Health, and Human Embodiment: The Familial Lifeworld Mark J. Cherry

6.1 Introduction The human family is a foundational element of the embodied social reality of persons. The family is a key element of the fabric of social reality that is phenomenologically immediately given. It exists before any judgment, before anyone explicitly considers its unity or importance. Nonetheless, it is central to human experience and consciousness of reality. The family is an already existing social unity. Persons and their intimate relationships are presented to consciousness and to thought as existing in families. The family is also a way in which we conceptualize the unity of persons, along with their biological-relations who together constitute the reality of the human family. Recognizing the family in this fashion provides a foundational condition for the possibility of being conscious of, experiencing, and conceptualizing a major domain of human experience.1 The experiential reality of the human family also plays a well-documented role in health and well-being. As I argue, the family is an epistemic category as well as an ontological category; it reveals the being of the phenomenological life-world in ways that are necessary for adequately appreciating the embodiment of human health and well-being. Without the family, for example, there are significant areas  Note, the human experience being explored is that of typical mature adults, rather than infants. As Schutz and Luckmann note: “We have occupied ourselves up until now with the life-world of everyday life, which we define as that reality the wide-awake normal person finds given straightforwardly in the natural attitude” (Schutz & Luckmann, 1973, p. 16). 1

M. J. Cherry (*) Department of Philosophy, St. Edward’s University, Austin, TX, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 E. Boublil, S. Ferrarello (eds.), The Vulnerability of the Human World, Philosophy and Medicine 148, https://doi.org/10.1007/978-3-031-41824-2_6

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of human flourishing about which one cannot know (e.g., what it means to be a parent, a child, or a spouse). The family also uncovers entire categories of moral duties and virtues central to the creation and maintenance of core areas of human well-being, which often involve relationships in which one will not have explicitly consented to participate (e.g., a grown child’s moral obligations to his aging parents). Familial interactions routinely demonstrate altruistic behaviors and other-directed personal costs at levels that are atypical of other types of relationships. The living experience of familial relations is different than the bond of friends, neighbors, or colleagues. Characterizing spouses as friends who happen to live and sleep together is to mischaracterize cardinal elements of what it is to be married. Grandparents care about the well-being of their grandchildren (and great grandchildren) in ways that reach beyond any experiential interest, such as the personal enjoyment that might come from watching them grow up. Close family relationships tend to be both more benevolent (as well as more intrusive) than other types of human social interactions. As the chapter explores, significant cross-cultural data support the conclusion that family life provides social, emotional, adaptive, and financial advantages, as well as the development of affective autonomy, increased longevity, improved physical and psychological health (see, e.g., Holt-Lundstad et al., 2010; Jia & Lubetkin, 2020; Eaker et al., 2007; Defoe, 2003; Gallagher & Waite, 2000; Settersten & Ray, 2010). Conversely, traumatic changes to family life, such as the death of a spouse, are well-documented as negatively impacting personal stability, life-expectancy, and overall well-being (see, e.g., Bennet et  al., 2005; Paterson, 2010; Kposowa, 2009). Consequently, to focus unduly on the individual in isolation from the family, I argue, is to diminish this rich and significant category of human good and well-being.

6.2 The Family as a Central Phenomenological Category Instead of attempting to understand the family and its connection to human well-­ being in terms of a supposedly ideally rational concept of the family or stipulating particular moral meanings to the family, a critical exploration of its  being must begin with the experienced social phenomena of the family itself. Structures that are already present must be unfolded and laid bare. The world appears as a richly textured, coherent whole. It is populated with objects, living beings, and social unities. Our experience of the life-world in this way consists of a natural attitude in which “we, as human beings among fellow-beings, experience culture and society, take a stand with regard to their objects, are influenced by them and act upon them. In this attitude the existence of the life-world and the typicality of its contents are accepted as unquestionably given until future notice” (Schutz, 1966, p. 116). The taken-for-­ granted appearance of the physical and social world in all its richness is the beginning of such analysis.

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Ours is experientially a social world. One recognizes not only friends, colleagues and strangers, but also, brothers and sisters, parents and grandparents, children and grandchildren, aunts, uncles and cousins. One recognizes even social entities made up of numerous living beings, such as the family. To explore the family as a de facto category of social reality and its intimate relationship with human well-being, analysis must start with the family as it is immediately given. Biological familial relations and the intimate social relationships they imply are parts of the social reality that presents itself to us and that we apprehend. This is the being of the family for thought as well as thought’s apprehension of that being: a social reality that is already present and given to human experience. In this sense, the family can be appreciated as a type of prepredictive experience, to borrow an analytical methodology from Alfred Schutz. It is part of the unquestionable givenness of the life-world that thought apprehends. The social world is not essentially structureless. It has a particular meaning and relevance structure for the human beings living, thinking, and acting therein. They have preselected and preinterpreted this world by a series of common-sense constructs of the reality of daily life, and it is this thought-objects which determine their behavior, define the goal of their action, the means available for attaining them—in brief, which help them to find their bearing within the natural and socio-cultural environment and to come to terms with it. (Schutz, 1962, p. 6)

As Schutz points out, this unquestionable givenness of the life-world is apprehended in terms of types. Husserl has shown that, from the outset, the prepredicative experience of the life-world is fundamentally articulated according to types. We do not experience the world as a sum of sense data, nor as an aggregate of individual things standing in no relations to one another. We do not see colored spots and contours, but rather mountains, trees, animals, in particular birds, fish, dogs, etc. (Schutz, 1966, p. 125)

Our immediate experience is structured already as a coherent whole, which is apprehended in types or categories of being. Thus, we experience living beings, such as persons or dogs, tools and articles for use, such as cups and computers, as objects in the life-world. We also experience intimate social unities, such as the human family. As H. T. Engelhardt, Jr. argues: The cup on the table does not appear as a mental construct, an object fabricated out of sense impressions. It is already an object which has a certain purpose. True, one must learn its purpose. Indeed, the infant must learn to “recognize” it as an object. But these are empirical facts that are the subject matter of empirical psychology or at the most of very special areas in theoretical or rational psychology. In any case, for the adult the world appears as a rich connexus of well-formed objects and social relations in which one recognizes not only his brothers, sisters, friends, etc., but in which even certain idealized entities appear – for example the family. (Engelhardt, 1973, p. 6)

The human family is straightforwardly experienced as a category of being and as an object of experience. The family exists as a structure of our immediate experience of social reality. It is a part of the phenomenology of the social world. The family is just there; it is

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a feature of social experience and human life, an intimate feature of the life-world with which we as social beings reflexively interact that presents itself to human consciousness. Indeed, the family is central to how we experience the social being of ourselves and others as humans; it is an unquestioningly given aspect of society and culture. The reality of persons, their relationships, interactions, and obligations, are presented to consciousness and to thought as existing in families. Appreciating the family in this fashion is a foundational condition for the possibility of being conscious of, experiencing and recognizing  major domains of human experience and well-being. In short, the category “family” is among the most basic ways that thought apprehends the social reality of humans. The family is the social structure within which persons are born and, generally, live, procreate, raise children, and seek a wide variety of forms of human flourishing. Here, one can recognize the family as more than a mere set of personal relationships and individual undertakings, but as a sui generis social unity, representing a social reality in its own right. The family has a being that realizes a particular structure of the good, which while varying in certain ways from family to family, also sustains the necessary conditions for securing central areas of human well-being, as the sections explore below. As noted, the family is also an epistemic category: it is through the family that significant elements of human relations and human goods are known. For example, it is through the category of the family that one is able to recognize a nexus of social relationships and human interactions. The family discloses facts of the matter as well as normative commitments. Absent the family, one cannot know what it is to be a spouse, parent, or grandparent. Without the category of family, one will not be able adequately to appreciate such interpersonal relationships and their intimate connection to human well-being. There are particular goods and modes of being that are only available, knowable, and realizable through the richly textured context of family life. One encounters and can recognize a domain of human goods and well-being that are only understandable within the living reality of the human family. To recognize the family as a category of being is to discern that the family is a way in which one can think the unity of spouses together with their own biological (and, perhaps, adopted) children. That is, the family is a phenomenological category, a category of being, and a category of knowledge. The family is the way that one knows the social unity of the spouses with their children, and close relatives. It is the way in which this particular biologically-based social reality achieves its being as a domain of social interactions that are not just individual interactions but familial interactions. Indeed, it is only through the category of the family that this interaction of persons can be fully appreciated. Moreover, the family itself delimits and characterizes social reality. Families are not encountered as generic social structures. They are given in our experience as particular families – the Cherry family, the Crawford family, the Bohn family and so forth. Indeed, we recognize the particularity of families even when we do not know their familial names, or the precise nature of the extended family relations. (Think, for example, of the variety of families and close relations that arrive on college campuses each year

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to celebrate the graduation of one of their members.) There is also a brute givenness to the family. Persons do not spring into the world from nowhere but are born into families with parents and other biologically related social relations. The recognition of the family as an ontological reality is an acknowledgement of the presence of a social reality before and after all forms of social construction that might attempt to sway how we are taught to understand the human family and its “proper” structure.

6.3 Human Well-Being and Intergenerational Altruism Reflection on the family as a natural social phenomenon also discloses the lived experiential reality of the family. For example, it is an empirical fact of the matter that humans organize themselves into biologically connected families. Men and women bond with each other, cohabitate, create their own familial resources, procreate and raise children of their own. Families even extend through space and time. Consider how we track family members in different cities, countries and states, communicating with each other to express and experience important moments. We establish and set aside special holidays to spend time with our families (e.g., in the United States, the Wednesday before Thanksgiving is the single busiest travel day of the year, as families utilize every available mode of transportation to spend that holiday weekend together). The family is also experienced as an inherently historical social unity. As each of us as persons experience birth, childhood, adulthood, old age and death, the families to which we belong stretch through time, reaching from the past, through the present and into the future. As a social entity, the family may outlast other types of social entities, such as cities or countries. A family, whom I know well, has lived on the same land in what is now Texas, since before Texas was part of Mexico, then the Republic of Texas, and only much later the United States. Political entities come and go, but the family endures through time. Similarly, as Schutz and Luckmann recognize: Born into a family, I know that my grandfather lived in “another time”; I know that the “Golden Age,” the time of the founders of the race, of the Fall of man, the “Middle Ages,” etc., lie far into the past. I also live through this as imposed on me: that I was born into this time and into no other. I live through this fundamental temporal moment of my historical situation. … but, whereas the historical situation of the individual particular existence as such is unalterable, there is a different one for me, another for my great-grandfather, and another for my children. (Schutz & Luckmann, 1973, p. 50)

With careful planning, parents and grandparents immigrate to new countries, establish businesses and investment trusts, and make other decisions designed to benefit future generations of the family, many of whom they may never meet. Similarly, genealogical research is a very common way for families to trace their biological ancestry backwards through time, seeking insight into who they are, where they came from, and how the family came to be. Here, one might also think of family trees or crests, ancestral homes, and the importance given to informal oral family

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histories. Families trace their biological and ethnic roots, at times traveling to distant continents, seeking insight into their past, discovering who they are and where they are from. Adopted children have been known to seek out their biological parents and other blood relations. Acknowledging this interest, some countries have legally recognized a right to know about one’s genetic origins, making anonymous gamete donation and adoption significantly more difficult (Groll, 2021; De Melo-­ Martin, 2014; Ravitsky, 2014; Leighton, 2014). It is not unusual for families to feel shame for the sins of their ancestors, or pride when they descend from distinguished historical figures. Our personal well-being is routinely caught up with the past, present, and future well-being of our families. Altruistic behavior and the willingness to accept other-directed personal costs and obligations exists among family members at levels that are not typical of non-­ familial relationships, such as the provision of housing, healthcare, transportation, clothing, education expenses, food and so forth on behalf of members of the family. Favoritism toward one’s own children, grandchildren, parents, siblings and other closely related blood kin is the generally expected and experienced norm. Family members routinely sacrifice for other close relations in ways significantly both more intimate and extensive than they do even for very close friends. Wealth in families tends to move down the generations, for example, with grandparents often working financially to support grandchildren, rather than the other way around (Kaplan, 1994). At the same time, families typically care for their elderly members, while also laying out significant financial resources for adult children and younger grandchildren preparing the next generation of family life. Family relationships tend to display both more benevolence and more intrusiveness than other types of social relationships. In the United States, for example, the majority of living kidney donations are from a closely related family member. In part, this is due to the greater likelihood of a close tissue match among blood relations. But, it is also motivated by love, beneficence, and altruism, or, perhaps, out of fear of having failed in one’s duty as a parent, child or sibling for refusing to donate. While living kidney donation to a friend (or stranger) happens, it is significantly more rare (see, generally, Cherry, 2005/2015). Families routinely expend significant financial costs for their children, including adult children, such as college tuition, housing and other living expenses. According to a Pew Research Center poll, for example, approximately 52% of 18–29-year-olds in the United States lived with their parents in 2020. The vast majority of this group, some 88%, either moved back into or never left their parents’ home. The remainder either lived in their own home with their parents, or lived in a residence headed by another family member (Fry et al., 2020). Families also enter, whether or not they are invited or wanted, into intimate conversations about careers, lifestyle, child rearing, marriage and choice of spouse. The family discloses how persons socially organize themselves for the intimate interactions of reproduction as well as for the resource-intensive tasks of raising children and caring for the elderly. Within the family, persons discover themselves and their moral obligations already sustained within a web of pre-existing duties and relationships. Here, moral duties tend to be discovered rather than created. Traditional forms of the

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family, for example, do not appreciate children, parents and other adults as isolated individuals but rather as persons who have particular familial roles and obligations. As H. Tristram Engelhardt, Jr. put it: “The obligations that connect parents and children are such to which they may never have committed themselves and to which they need never have consented in order for the obligations to have moral force” (Engelhardt, 2010, p. 508). Persons are appreciated in part in terms of their particular roles and responsibilities to other members of the family. For example, parents understand themselves as in authority to consent to medical care as well as to make dietary, educational, and lifestyle choices, such as access to digital media and literature, on behalf of their minor children. Such day-to-day choices, including differing approaches to human flourishing, are framed within the family’s moral and cultural understandings, orienting children and adults towards specific forms of human well-­being. The life-world of the family teaches children particular forms of filial piety or religious obedience, moral understandings and ethical virtues, such as honesty and humility, love and care for others. Children are taught how to care for their brothers and sisters, parents and grandparents. Siblings may find that they will likely eventually need to take on responsibility for an adult brother or sister; for example, when he or she has a genetic condition, such as Down Syndrome, and may require life-long care. There are particular goods, moral understandings, modes of being and human flourishing that can only be known through the richly textured life of the family. Through the living reality of the family one encounters a domain of human goods, virtues, and well-being that are only understandable within this context. Without reference to the family, one can neither know nor properly express what it is to live with or to interact among others as a son, daughter, parent, grandparent, aunt, uncle, cousin. The family is a unique category of social existence through which one comes to know central elements of life and human goods that are typically taken as core to human flourishing and well-being.

6.4 Marriage, the Creation of a New Family, and Well-Being Through marriage and the creation of a new family unit, the couple intentionally reshapes the structure of the experienced life-world, and are themselves changed in turn by such significant modification.2 Their lives, choices, actions and property become intertwined in ways unknown prior to this creation of a family unit. In this self-conscious unity of the two, neither is living in isolation, each has renounced individual independence through their union with the other. Each wills the creation of the family unit. Thereafter, their family creates a social reality of its own. It possesses its own fabric of interests, investments, moral choices, and practical

 “The life-world is thus a reality which we modify through our acts and which, on the other hand, modifies our actions” (Schutz & Luckmann, 1973, p. 6). 2

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decisions, choosing where and how to live, acting as a social unit. Their actions are no longer the expressions of individual preferences, but rather reflect the goals and judgments of a family. 3 Having created a family, members are only again appreciated as isolated individuals if and when the family dissolves or individuals permanently separate themselves from it. As an individual, I always at the same time experience my actions and choices in terms of my relationship to a particular family. “If I am a married man, I cannot at the same time be a bachelor, and if I have once been married, I can be a bachelor only as a widower or divorced person” (Schutz & Luckmann, 1973, p. 101). If I sign a contract, obtain medical care, choose to accept a job in a new city, and so forth, I also always in significant ways bind my family with my choices. Even though family life can, at times, be intrusive, it routinely assists persons to achieve longer and more fulfilling lives. The high-quality social relationships typical of the family are associated in significant ways with positive mental health as well as decreased morbidity and mortality. The close ties of individuals to their family increases social integration, social regulation and support, reducing a wide variety of risks to health and death, including suicide (Kposowa, 2009). In a meta-­ analytic review of approximately 208,849 participants, Julianne Holt-Lundstad, Timothy Smith and J.  Bradley Layton documented that strong traditional social relationships, such as the family, indicated a 50% or greater increased likelihood of survival across a wide range of causes of death: Cumulative empirical evidence across 148 independent studies indicates that individuals’ experiences within social relationships significantly predict mortality. The overall effect size corresponds with a 50% increase in odds of survival as a function of social relationships. Multidimensional assessments of social integration yielded an even stronger association: a 91% increase in odds of survival. … results also remained consistent across a number of factors, including age, sex, initial health status, follow-up period, and cause of death, suggesting that the association between social relationships and mortality may be generalized. (2010, p. 9)

 The account of the family, which I defend, shares similarities with the categorial analysis of social and political life that G.W.F. Hegel explores in his Elements of the Philosophy of Right (§§158–180). Hegel recognizes that when man and woman join as husband and wife to live together and have children, they create a family. They cease to be isolated individuals and became members of a family. Relationships and interactions shift into the intimate familial relationships and personal associations of family members. Hegel recognizes both that the family forms a social unity as well as that it embodies a particular moral content. “The family, as the immediate substantiality of spirit, has as its determination the spirit’s feeling [Empfindung] of its own unity, which is love. Thus, the disposition [appropriate to the family] is to have self-consciousness of one’s individuality within this unity as essentially which has being in and for itself, so that one is present in it not as an independent person [eine Person für sich] but as a member (Hegel, 1991, §158, p. 199). Hegel recognizes the family as a natural fact of the matter that embodies a substantial ethical end. “Marriage, as the immediate ethical relationship, contains first the moment of natural vitality; and since it is a substantial relationship, this involves life in its totality, namely as the actuality of the species [Gattung] and its process” (§161, p.  200). “The ethical aspect of marriage consists in the consciousness of this union as a substantial end, and hence in love, trust, and the sharing of the whole of individual existence [Existenz]” (§163, p. 202). 3

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A U.S. Medicare Health Outcome Study found that between 65 and 85 years of age, married men and women had longer total life expectancy as well as active life expectancy than their unmarried counterparts (Jia and Lubetkin 2020). Similarly, a Framingham Offspring Study that looked at marital status and the risk of coronary heart disease, found that even after adjusting for other risk factors, such as age, blood pressure, total cholesterol, and smoking, married men were less than half as likely to die during the follow-up period as unmarried men (Eaker et  al. 2007). As documented by Harvard: Men’s Health, a survey of 127,545 adults in America found that married men are in general healthier than single men (2019).4 Moreover, in a study of 27,779 cancer cases, unmarried individuals were more likely to have advanced disease by the time of diagnosis and less likely to receive treatment than married persons. Intact marriage was also a marker for better cancer survival rates (Harvard: Men’s Health, 2019). For prostate cancer, in a study of 143,063 men with the disease over a 17-year period, married men survived significantly longer than men who were single, separated or widowed (Harvard: Men’s Health, 2019).5 The intimacy of the family and its connection to human well-being is such that significant or sudden changes to the familial life-world can have traumatic outcomes. With the death of one’s spouse, for example, there is the destruction of the family nucleus and the consequences to personal, familial and social instability that follow (Bennet et  al., 2005). One study tracked 12,522 married people over 14–23 years, during which time the spouses of 1453 male and 3294 female participants died. It found an elevated death rate for the surviving spouse, with some 15% of the widows and 30% of the widowers also dying during the study period. Healthy men who lost a wife were 2.1 times more likely to die during the study period than healthy men who were not bereaved; for men with preexisting medical problems, bereavement boosted the rate of death 1.6 times. The risk was greatest from seven to 12 months after the loss, but an elevated death rate persisted for more than two years. (Harvard: Men’s Health, 2019)  “Men who have marital partners also live longer than men without spouses; men who marry after age 25 get more protection than those who tie the knot at a younger age, and the longer a man stays married, the greater his survival advantage over his unmarried peers. But is marriage itself responsible for better health and longer life? Although it’s hard to be sure, marriage seems to deserve at least part of the credit. Some have argued that self-selection would skew the results if healthy men are more likely to marry than men with health problems. But research shows the reverse is true: unhealthy men actually marry earlier, are less likely to divorce, and are more likely to remarry following divorce or bereavement than healthy men. Another potential factor is loneliness; is the institution of marriage linked to better health, or is it simply a question of living with another person? Although studies vary, the answer seems to be a little of both. People living with unmarried partners tend to fare better than those living alone, but men living with their wives have the best health of all” (Harvard: Men’s Health, 2019: https:// www.health.harvard.edu/mens-health/marriage-and-mens-health). 5  “Prostate cancer is a particular concern for men. To find out how marriage affects survival, scientists from the University of Miami investigated 143,063 men with the disease. Over a 17-year period, married men survived far longer (median 69 months) than separated and widowed patients (38 months); men who had never married had an intermediate survival rate (49 months)” (Harvard: Men’s Health, 2019: https://www.health.harvard.edu/mens-health/marriage-and-mens-health). 4

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For both sexes, the death of a spouse increases the mortality of the bereaved living spouse. Another study of 373,189 elderly married couples in the United States found that: For both men and women, the death of a predecedent spouse from almost all causes, including various cancers, infections, and cardiovascular diseases, increased the all-cause mortality of the bereaved partner to varying degrees. Moreover, the death of a predecedent spouse from any cause increased the survivor’s cause-specific mortality for almost all causes, including cancers, infections, and cardiovascular diseases to varying degrees. (Elwert & Christakis, 2008, p. 2092)

With the death of a spouse, social reality is profoundly altered, creating a sudden change in one’s social, emotional, and physical state (Paterson, 2010). Divorce is also considered a highly reliable indicator of social disintegration as well as a significant factor in suicide (Kposowa, 2009; Yip et al., 2015). The association between stressful life events, such as divorce, and the development of forms of psychopathology, such as depression, is well documented (Hammen, 2005, 2015). Divorce breaks the ties of individuals to family and society, reducing social integration, social regulation, and support, leading to higher suicide rates. A 24 year cohort study found that relative hazard of suicide decreased with increasing levels of social integration: marriage, size of social network, and religious participation provided the greatest protective associations (Tsai et al., 2014). While marriage creates a new and significant reality, families fractured by the death of a spouse or by divorce only incompletely and one-sidedly realize what it is to achieve the full social reality of the family. The familial role of “husband” or “wife” is lost, and one’s interactions with others no longer expresses, directly or indirectly, that unity of marriage. In such cases, key components, important interpersonal relationships, social capital, and central elements of human flourishing are missing with significant well-documented experiential impact on health and well-being.

6.5 Familial Well-Being and Child Rearing The character of the empirical data also supports the family as necessary for adequately appreciating the sociobiological data regarding the successful raising of children. Significant cross-cultural evidence has accumulated, for example, that children who are raised in a family, in which both biological parents are present, have adaptive, social, emotional, psychological, and financial advantages over children raised in other environments. Children raised by a single parent, for example, are more likely to engage in delinquency as adolescents and criminality as adults, to fail to finish school, to be impoverished, to become pregnant as a teenager, as well as to experience poor emotional and psychological health (Defoe, 2003; Norval et al., 2002; Weitoft et al., 2003).

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Children raised in single-parent households are, on average, more likely to be poor, to have health problems and psychological disorders, to commit crimes and exhibit other conduct disorders, have somewhat poorer relationships with both family and peers, and as adults eventually get fewer years of education and enjoy less stable marriage and lower occupational statuses than children whose parents got and stayed married. This “marriage gap” in children’s well-being remains true even after researchers control for important family characteristics, including parents’ race, income, and socioeconomic status. (Gallagher & Waite, 2000, p. 125; see also Kaylen & Pridemore, 2011)

Children from divorced families are more likely to divorce in adulthood, to attempt suicide as teenagers, to abuse alcohol, and to use narcotics (Norval et  al., 2002, p. 37; see also Wilcox et al., 2011). Statistics on child abuse, neglect, and homicide are much worse for children being raised in single parent homes or homes with married or unmarried stepparents or a non-spousal partner, such as a cohabitating boyfriend or girlfriend, when compared to children raised by their own married biological parents. Martin Daly and Margo Wilson, when looking at a large-scale study of child-abuse data in the United States, were forced to conclude: But as we made our abuse criteria increasingly stringent and narrowed the sample down to the most unmistakable cases, the overrepresentation of stepfamilies did not diminish. Quite the contrary, in fact, by the time we had reduced the cases under consideration from the full file of 87,789 validated maltreatment reports to the 279 fatal child-abuse cases, the estimated rates in step-parent-plus-genetic parent households had grown to approximately one hundred times greater than in two-genetic-parent households. (Daly & Wilson, 1999, p. 28; see also Daly & Wilson, 2008)

Similarly, Alexandre et al. concluded that …[S]tepfathers, on average, are less attached to the unrelated children of their partners than genetic fathers to their own children. … In addition stepfathers and children compete for mother’s time, energy, attention, or affections. All of these suggest that genetic fathers may make higher quality investments in children than stepfathers; accordingly, stepfathers have a higher probability of physically abusing children. (2010, p. 960)

Such data is available from around the world. Daly and Wilson document that in Great Britain, stepparents are greatly overrepresented as child abusers and even greater in terms of child homicide (1999, p. 32). One study of fatal child abuse in Britain found that 62% of offenders were stepfathers (Cavanagh et  al., 2007). Mistreatment, sexual abuse, and battery are all far more likely to be of stepchildren (MacDonald & Demaris, 1996; Margolin, 1992; McRee, 2008; Starling et  al., 1995). In the Netherlands, a study that collected data from seventeen of the country’s child-protective agencies found families with a stepparent to have an elevated rate risk of child maltreatment (van Ijzendoorn et al., 2009). In rural China, data suggests that children of divorced and separated parents are much more likely to experience multiple types of abuse or violence than children who live with their biologically related parents (Mengtong & Ling, 2016). Similar data is available in Korea (Kim & Ko, 1990), South Africa and elsewhere (Anderson et al., 1999; Madu & Peltzer, 2000).

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Mothers have been shown to be more likely to abuse their own children when there is a non-biologically related father figure living in the home. There may be financial and social benefits for single mothers who choose to live with a man or to remarry. Regardless, stress associated with the creation and maintenance of stepfamilies is associated with an elevated statistical risk of child abuse (Berger et al., 2008). A Brazilian study, for example, found that child physical abuse was 2.7 times more likely in a household with a stepfather present than in a home with two genetic parents. The elevated risk of abuse in this particular study was often due to alleged abuse by the mother (Alexandre et al., 2010, p. 960). Children living in households with biologically unrelated adults, including stepparents and foster parents, were significantly more likely to die from inflicted injury when compared with children living with their two biological parents (Palusci & Covington, 2014, p. 26; see also Schnitzer & Ewigman, 2005; Stiffman et al., 2002). Adolescents who grow up in a household without their biological father also have an elevated risk of incarceration. Even the presence of a stepfather in the home did not lower such risks. “The incarceration odds of youths in stepparent families were significantly higher than those in single-parent families. The odds for youths from stepparent families were similar to those for youth who do not live with any parents” (Harper & McLanahan, 2004, p. 386). Grandparents who live with their grandchildren, on the other hand, shift outcomes in a positive direction. “Within such households, live-in grandparents played a statistically significant protective effect in keeping adolescents out of criminal activity” (Harper & McLanahan, 2004, p. 391). Live-in biologically related grandparents helped to ameliorate the disadvantages of an absent biological parent. Transitioning from adolescence into adulthood, even in the best of circumstances, is highly stressful. Families typically nurture their adolescent, teenage, and young-adult members, providing ongoing lifestyle and career guidance, shelter, and financial support well beyond childhood. Learning how to “adult”, i.e., how to function in the world in an autonomous, responsible, and effective adult manner can be a slow and arduous process. Children often rely on their parents well into their twenties and beyond. Unless children fully separate from their parents, this transitional stage is most accurately described as one constituted over a spectrum of semi-­ autonomy during which the now adult child slowly achieves full affective autonomy with a great deal of support and guidance from parents and other family members. Access to the additional resources, intellectual and emotional support of the family helps engender positive outcomes, while softening the consequences of poor judgments typical of early adulthood (Settersten & Ray, 2010, p. 33).6  The adolescent years can be precarious. “1) This developmental period is characterized by higher rates of experimentation and novelty seeking. 2) Addictive disorders in adults generally have onset in adolescence and early adulthood. 3) Early onset of substance use predicts greater severity and morbidity of substance use disorders. Of particular note is that in alcoholics, 80% of the cases began before the age of 30 and over 40% reported alcohol related problems between the ages of 15 and 19. Our observations at the cellular level are consistent with the idea that alcohol and other drugs of abuse engage glutamatergic-based learning processes that are particularly active during neurodevelopment that characterizes the adolescent brain” (Carpenter-Hyland & Chandler, 2007, p. 206). 6

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The role that male and female biological parents play in the successful raising of their children and in smoothing the transition from childhood to adulthood cannot be easily reproduced by third-parties or other social institutions. Even if the transition to adulthood had not become so demanding, members of these vulnerable groups [children raised in foster care or in a group care setting] would face exceptional challenges finding employment, attending college, and marrying and starting a family. Many struggle with emotional or behavioral problems; many have histories of problems in school and the community. Often their families are unable or unwilling to provide the ­support that most families provide to their children during this transition – funding for college, child care that permits work or schooling for young parents, a place to live when times are hard. (Osgood et al., 2010, p. 211)

Youth raised in non-family environments, such as state care and foster homes, are required to leave these settings once they become too old to be eligible for such social-welfare services, even though their need for economic support as well as emotional and psychological nurturing continues. The empirical data support regarding the biological family as necessary for adequately appreciating the ways in which men and women come together to reproduce and successfully raise children.7 Non-traditional living arrangements, such as a group of close friends, even when children are present, may use the terminology of “family” to express emotional connectedness or the fact that they live together, but such social settings depart in important ways from the social and biological experience of the human family. The biologically related family plays a central role in advantaging children and for providing access to an array of family-based goods and forms of nurturing that are associated with human well-being.

6.6 Concluding Reflections on the Family and Its Authority In summary, the biological family is an immediately given category of social reality. It is how one finds the social world constructed. The family is a way of knowing and a way that social reality exists; that is, it is an epistemological category as well as a category of being. It is an experiential part of the life-world. To recognize the family as an ontological reality is to reject a nominalist account that would hold that one is free without moral or epistemic costs to stipulate a meaning regarding what it is to be a family.

 As Charles Murray summarizes: “No matter what the outcome being examined—the quality of the mother-infant relationship, externalizing behavior in childhood (aggression, delinquency, and hyperactivity), delinquency in adolescence, criminality as adults, illness and injury in childhood, early mortality, sexual decision making in adolescence, school problems and dropping out, emotional health, or any other measure of how well or poorly children do in life—the family structure that produces the best outcomes for children, on average, are two biological parents who remain married” (2012, p. 158). 7

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Among the consequences of the family’s life-world is that it possesses at least limited authority over its members. The family’s authority can be appreciated as grounded in the nature of the family as a sui generis social unit. As described, the family constitutes a domain of morally normative interactions that have a social reality of their own, such that in realizing this domain of normative understandings the family is also in a position to define and protect its own interests and authority as well as the best interests of its members. The character and extent of such authority will depend on the normative account of the good the family embraces. However, the family itself demarcates those who are outsiders, while also conserving and expending resources to help the family and its members succeed. Members work financially to support current familial needs or to create an estate to benefit future generations of the family. Families may impose costs on some members to benefit others, such as caring for the sick, disabled, or elderly; they also routinely seek success for family members in competitive environments. The authority of the family depends on its ontological nature, including the normative account of the good and human well-being embraced by the particular family. Familial authority is always structured within the contours of particular accounts of human flourishing, norms regarding parenting and parental decision-making, as well as understandings regarding appropriate relationships among spouses. Such social roles bring with them broad stores of knowledge that are transmitted from parents to children. Here, the family presents itself and is experienced as a relatively nonnegotiable social and moral structure whose general features and moral understandings are to be discovered rather than created. Familial authority and its particular modes of decision making may often be tacit rather than explicit. However, members can be recognized as giving legitimacy to the family and its authority by remaining with the family. The burden will generally be on those persons who do not wish to participate in such common undertakings to divorce themselves from or otherwise permanently emancipate themselves from the family, its emotional support and financial economy. The family exists as a routine nexus of face-to-face social relationships, as a result, the consent of persons, including adults, to be members of a particular family is easily more amply demonstrated than that of citizens to be under the authority of a particular government. In the strict sense, the recognition of the biological family as the social realization of a well-known pattern of social data does not entail a moral judgment; nor, is there any suggestion that all families are perfect, loving, and supportive. Instead, it yields a categorial point: various human social groupings, lifestyles, and living arrangements will, in greater and lesser ways, fail to encompass the mode of being that is socially and sociobiologically, indeed categorially, constitutive of the family. The family is the social unity within which persons discover themselves and their moral duties as already sustained by and within a web of intimate pre-existing relationships that nurture significant aspects of human well-being. Moreover, as argued, in the absence of the family, central possibilities for mutual acknowledgement and human well-being would go unrealized (see also Cherry, 2010; Engelhardt, 2010, p. 507).

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References ___. (2019, June 5). Harvard: Men’s Health: Marriage and men’s health. https://www.health. harvard.edu/mens-­health/marriage-­and-­mens-­health Alexandre, G. C., Nadanovsky, P., Moraes, C. L., & Reichenheim, M. (2010). The presence of a stepfather and child physical abuse, as reported by a sample of Brazilian mothers in Rio de Janeiro. Child Abuse & Neglect, 34, 959–966. Anderson, K. G., Kaplan, H., Lam, D., & Lancaster, J. B. (1999). Paternal care by genetic fathers and stepfather II: Reports by Xhosa high school students. Evolution and Human Behavior, 20(6), 433–451. Bennet, K. M., Smith, P. T., & Hughes, G. M. (2005). Coping, depressive feelings and gender differences in late life widowhood. Aging and Mental Health, 9(4), 348–353. Berger, L. M., Carlson, M. J., Bzostek, S. H., & Osborne, C. (2008). Parenting practices of resident fathers: The role of marital and biological ties. Journal of Marriage and the Family, 70, 625–639. Carpenter-Hyland, E. P., & Chandler, L. J. (2007). Adaptive plasticity of NMDA receptors and dendritic spines: Implications for enhanced vulnerability of the adolescent brain to alcohol addiction. Pharmacology, Biochemistry and Behavior, 86(2), 200–208. Cavanagh, K., Emerson Dobash, R., & Dohash, R. P. (2007). The murder of children by fathers in the context of child abuse. Child Abuse & Neglect, 31(7), 731–746. Cherry, M.  J. (2005/2015). Kidney for sale by owner: Human organs, transplantation, and the market. Georgetown University Press. Cherry, M. J. (2010). Parental authority and pediatric decision making. Journal of Medicine and Philosophy, 35(5), 553–572. Daly, M., & Wilson, M. (1999). The truth about Cinderella: A Darwinian view of parental love. Yale University Press. Daly, M., & Wilson, M. (2008). Is the “Cinderella effect” controversial? A case study of evolution-­ minded research and critiques thereof. In C. Crawford & D. Krebs (Eds.), Foundations of evolutionary psychology (pp. 383–400). Psychology Press. De Melo-Martin, I. (2014). The ethics of anonymous gamete donation: Is there a right to know one’s genetic origins. Hastings Center Report, 44(2), 28–35. Defoe, B. (2003). Why there are no good men left. Broadway Books. Eaker, E. D., Sullivan, L. M., Kelly-Hayes, M., D’Agostino, R. B., Sr., & Benjamin, E. J. (2007). Marital status, marital strain, and risk of coronary heart disease or total mortality: The Framingham Offspring Study. Psychosomatic Medicine, 69, 509–513. Elwert, F., & Christakis, N. A. (2008). The effect of widowhood on mortality by the causes of death of both spouses. American Journal of Public Health, 98(11), 2092–2098. Engelhardt, H. T., Jr. (1973). Mind-body: A categorial relation. Martinus Nijhoff. Engelhardt, H. T., Jr. (2010). Beyond the best interests of children: Four views of the family and of foundational disagreements regarding pediatric decision-making. Journal of Medicine and Philosophy, 35(5), 499–517. Fry, R., Passell, J. S., & Cohn, D. (2020). A majority of young adults in the U.S. live with their parents for the first time since the Great Depression. Pew Research Center, September 4, 2020. https://www.pewresearch.org/fact-­tank/2020/09/04/a-­majority-­of-­young-­adults-­in-­the-­u-­s-­ live-­with-­their-­parents-­for-­the-­first-­time-­since-­the-­great-­depression/ Gallagher, M., & Waite, L. (2000). The case for marriage. Random House. Groll, D. (2021). Well-being, gamete donation, and genetic knowledge: The significant interest view. Journal of Medicine and Philosophy, 46(6), 758–781. Hammen, C. (2005). Stress and depression. Annual Review of Clinical Psychology, 1, 293–319. Hammen, C. (2015). Stress sensitivity in psychopathology: Mechanisms and consequences. Journal of Abnormal Psychology, 124(1), 152–154.

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Harper, C. C., & McLanahan, S. S. (2004). Father absence and youth incarceration. Journal of Research on Adolescence, 14(3), 369–397. Hegel, G. W. F. (1991). Elements of the philosophy of right (A. Wood, Ed., H. B. Nisbet, Trans.). Cambridge University Press. Holt-Lunstad, J., Smith, T. B., & Layton, J. B. (2010). Social relationships and mortality risk: A meta-analytic review. PLoS Medicine, 7(7), 1–20. Jia, H., & Lubetkin, E. (2020). Life expectancy and active life expectancy by marital status among older U.S. adults: Results from the U.S.  Medicare Health Outcome Survey (HOS). SSM Population Health, 12, 100642. https://doi.org/10.1016/j.ssmph.2020.100642. eCollection 2020 Dec. Kaplan, H. S. (1994). Evolutionary and wealth flows theories of fertility: Empirical tests and new models. Population and Development Review, 20(4), 753–791. Kaylen, M., & Pridemore, W. (2011). A reassessment of the association between social disorganization and youth violence in rural areas. Social Science Quarterly, 92(4), 978–1001. Kim, K., & Ko, B. (1990). An incidence survey of battered children in two elementary schools of Seoul. Child Abuse & Neglect, 14(2), 273–276. Kposowa, A. (2009). Psychiatrist availability, social disintegration, and suicide deaths in U.S. counties, 1990–1995. Journal of Community Psychology, 37(1), 73–87. Leighton, K. (2014). The right to know genetic origins: A harmful value. Hastings Center Report, 44(4), 5–6. MacDonald, W.  L., & Demaris, A. (1996). Parenting stepchildren and biological children: The effects of stepparent’s gender and new biological children. Journal of Family Issues, 17(1), 5–25. Madu, S. N., & Peltzer, K. (2000). Risk factors and child sexual abuse among secondary school students in the Northern Province (South Africa). Child Abuse & Neglect, 24(2), 259–268. Margolin, L. (1992). Child abuse by mothers’ boyfriends: Why the overrepresentation? Child Abuse & Neglect, 16(4), 541–551. McRee, N. (2008). Child abuse in blended households: Reports from runaway and homeless youth. Child Abuse & Neglect, 32(4), 449–453. Mengtong, C., & Ling, C.  K. (2016). Parental absence, child victimization, and psychological well-being in rural China. Child Abuse & Neglect, 59, 45–54. Murray, C. (2012). Coming apart: The state of white America. Crown Forum. Norval, G., Nock, S., & Waite, L. J. (2002). Why marriage matters: Twenty-one conclusions from the social sciences. American Experiment Quarterly, 5(1), 34–44. Osgood, D. W., Foster, E. M., & Courtney, M. E. (2010). Vulnerable populations and the transition to adulthood. The Future of Children, 20(1), 209–229. Palusci, V. J., & Covington, T. M. (2014). Child maltreatment deaths in the U.S. National Child Death Review Case Reporting System. Child Abuse & Neglect, 38, 25–36. Paterson, R. (2010). Old and alone: Bereavement and the older person. British Journal of Community Nursing, 15(1), 44–45. Ravitsky, V. (2014). Autonomous choice and the right to know one’s genetic origins. Hastings Center Report, 44(2), 36–37. Schnitzer, P.  G., & Ewigman, B.  G. (2005). Child deaths resulting from inflicted injuries: Household risk factors and perpetrator characteristics. Pediatrics, 116, e687–e693. Schutz, A. (1962). Collected papers, Vol. I, The problem of social reality (M.  Natanson, Ed.). Martinus Nijhoff. Schutz, A. (1966). Some structures of the life-world. In Collected papers, vol. III: Studies in phenomenological philosophy (A. Gurwitsch, Trans.). Martinus Nijhoff. Schutz, A., & Luckmann, T. (1973). The structures of the life-world (R. Zaner & H. T. Engelhardt, Jr., Trans.). Northwestern University Press. Settersten, R. A., Jr., & Ray, B. (2010). What’s going on with young people today? The long and twisting path to adulthood. The Future of Children, 20(1), 19–41. Starling, S. P., Holden, J. R., & Jenny, C. (1995). Abusive head trauma: The relationship of perpetrators to their victims. Pediatrics, 95(2), 259–262.

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Stiffman, M. N., Schnitzer, P. G., Adam, P., Kruse, R. L., & Ewigman, B. G. (2002). Household composition and risk of fatal child maltreatment. Pediatrics, 109, 615–621. Tsai, A. C., Lucas, M., Sania, A., Kim, D., & Kawachi, I. (2014). Social integration and suicide mortality among men: 24-Year cohort study of U.S. health professionals. Annals of Internal Medicine, 161(2), 85–95. Van Ijzendoorn, M., Euser, E. M., Prinzie, P., Juffer, F., & Bakermans-Kranenburg, M. J. (2009). Elevated risk of child maltreatment in families with stepparents but not with adoptive parents. Child Maltreatment, 14(4), 369–375. Weitoft, G. R., Hjern, A., Haglund, B., & Rosén, M. (2003). Mortality, severe mortality, and injury in children living with single parents in Sweden: Population based study. Lancet, 361(9354), 289–295. Wilcox, W. B., et al. (2011). Why marriage matters: Thirty conclusions from the social sciences. Institute for American Values. Yip, P. S., Yousuf, S., Hon Chan, C., Yung, T., & Wu, K. (2015). The roles of culture and gender in the relationship between divorce and suicide risk: A meta-analysis. Social Science & Medicine, 128, 87–94.

Chapter 7

The Dissolution of the Pregnant City: A Philosophical Account of Early Pregnancy Loss and Enigmatic Grief Marjolein Oele

[T]he material experience of relationality needs, now or in the future, to venture into philosophy. Cavarero and Bertolino (2008, 162) [P]erhaps what I have lost ‘in’ you, that for which I have no ready vocabulary, is a relationality that is neither myself nor you, but the tie by which those terms are differentiated and related. Butler (2003, 13) Thinking people must learn to grieve-with. Mourning is about dwelling with a loss and so coming to appreciate what it means, how the world has changed, and how we must ourselves change and renew our relationships if we are to move forward from here. Haraway (2016, 38)

7.1  Introduction I stare out of the windows into the night, trolley buses zipping by, their overhead wires piercing the foggy air with their zapping sounds. Lights in neighboring homes across the street gradually dim. While the surgery, earlier this afternoon, so effectively and painlessly removed the remaining tissues of what is suddenly called “miscarriage,” the aftermath feels raw, surreal, uneasy. Emptied out. Of what, of whom, and now?

M. Oele (*) Department of Philosophy, University of San Francisco, San Francisco, CA, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 E. Boublil, S. Ferrarello (eds.), The Vulnerability of the Human World, Philosophy and Medicine 148, https://doi.org/10.1007/978-3-031-41824-2_7

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Pregnancy has been a life-changing experience for me: not only because of the profound bodily transformation that I underwent and the amazing two forms of life that emerged, but also because of its painful loss.1 As a woman-philosopher,2 the unexpected loss of our first pregnancy confronted me with the edge of words and a lack of helpful philosophical concepts.3 This prompted me to ask a simple yet profound question: how can I, as a woman-philosopher, conceptualize the ambiguity of early pregnancy loss and how may I grasp its lingering pain? And, more strategically, how may I—with the conceptual forces that undergird my philosophical existence— come to the aid of others who have been similarly affected and combat our current cultural discourse that is unfit to address the ambivalence surrounding early

 In this chapter, I will address my first-person experience of miscarrying a wanted pregnancy, which I describe as “miscarriage” or “early pregnancy loss.” Both terms have problems: “miscarriage” is problematic since it seems to imply failure and culpability; “loss” is problematic since it implies a sensitivity that not everyone miscarrying might feel. However, I will keep using the term “miscarriage” since no other good alternative is currently available. Additionally, while I am aware that others may contest my use of the term “loss” in the context of miscarriage, I am pressed to use this term given (a) my own felt sense of loss, and (b) recognition of the fact that many others have been, or will be, similarly affected. This is not to deny other possible attitudes towards miscarriage or urge that such a sense of loss must be felt after a pregnancy ends. In fact, as Amber Griffioen has emphasized, “in some cases (especially in the past, but also in the present) a miscarriage is/was the best way for a woman to survive her pregnancy” (Amber Griffioen, chat conversation “New Voices: Women and their Body,” December 8, 2022). Moreover, my writings on miscarriage arise from my personal context: they are not intended to contribute to either side of the renewed political debates following in the wake of the 2022 U.S. Supreme Court repeal of Roe v. Wade. If anything, this chapter aims to show the importance of philosophically analyzing miscarriage and aid those caught in the aftermath of miscarriage. I want to echo Alison Reiheld’s important remark that “were miscarriage better theorized, perhaps it would not so easily be enrolled in those other debates” [i.e., regarding maternal autonomy and abortion] (Reiheld, 2015, 9). 2  It is important to note in this context that I will use the term “woman” or “woman-philosopher” as the starting point for analyzing my own (pre- and post-) pregnant state of being. In this context I will also speak of the pregnant body and will refer to the terms “mother,” “potential mother,” and “woman-becoming-mother.” I use these terms in a predominantly biological way, following the medical scientific literature, referring to how most pregnancies gestate, conceive, and give birth, namely, in terms of a female gestational body. This is not to devalue those gestational bodies that are differently gendered (such as those of transgender women) or nongendered. In fact, this chapter, like other phenomenologies of pregnancies that I have undertaken, tries to move beyond the sex/gender division by outlining the mixed, complex, material powers of (pre- and post-) pregnant bodies in their interplay with the environment. I owe these insights to a helpful discussion with Emily Parker (email message to author, September 2016). 3  With a few exceptions, miscarriage has not been part of the philosophical discourse. An important, recent contribution to the discussion is the 2015 special topics issue of Social Philosophy (edited by Cahill, Norlock, and Stoyles) organized around the theme of “Miscarriage, Reproductive Loss, and Fetal Death” (Cahill et al., 2015). In their introduction, the editors mention the “social and intellectual silence” that surrounds the topic of miscarriage (Cahill et  al., 2015, 7). More sources for philosophical analyses of miscarriage can be found in the helpful editorial introduction by Cahill, Norlock and Stoyles. Another recent contribution to the discussion is Jennifer Scuro’s book The Pregnancy [Does-Not-Equal] Childbearing Project: A Phenomenology of Miscarriage (Scuro, 2017). Finally, a key text that informs many writings on miscarriage is anthropologist Linda Layne’s Motherhood Lost: A Feminist Account of Pregnancy Loss (Layne 2003). 1

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pregnancy loss,4 as it silences miscarriage, thereby compounding suffering? (Frost et al., 2007, 1004).5 One way to access the meaning of pregnancy loss is to think of pregnancy as the emergence of a pregnant constellation. More specifically, in previous work, I have proposed to view pregnancy as the building of a pregnant city (Oele, 2017, 356)— analogous to Plato’s building of a city in the Republic. To illustrate, Plato’s city offers a new beginning built upon division of labor and specialization of its parts, yet the city is unified in its common goal and functioning, and it is protected and inspired through its demonic, philosophical guardians. Similarly, pregnancy, as a new beginning, is based upon a division of labor of emergent parts that are connected and differentiated through mimetic bonds and are unified by a common goal that may sometimes be detrimental to one or more of these parts. Furthermore, like the guardian-philosophers that install a city, the pregnant city is installed by a very particular organ of the in-between: the placenta-guardian. In sum, in his Republic, Plato paints a city in thought and wants to start anew through a new educational system and a new organization of the political system; similarly, pregnancy installs a new regime, the pregnant city, that organizes a new communal body in a newly emerging place and time. If pregnancy can be characterized as the building of a pregnant city, then what happens when the emerging pregnant city falls apart prematurely? My analysis focuses on the liminal6 experience of early miscarriage (i.e., miscarriage before the 12th gestational week), which is important for three reasons. First, this form of ephemeral loss is conceptually under-articulated, yet experientially prevalent (e.g., 70% of conceptions end prior to birth) (Larsen et al., 2013, 2–3).7 Second, redefining early pregnancy loss stimulates correction of many accounts of loss that are predominantly focused on the loss of individuated, singular beings rather than loss at the level of the milieu, the joint constellation, or the emergent “city” or sphere. Third, recognizing the importance and prevalence of dissipating constellations and the way that they perforate the model of the autonomous self may bring

 In other philosophical publications on pregnancy, I have referenced the figure of Diotima (in Plato’s Symposium) as a key inspirational figure for my own thoughts on pregnancy. Along the lines of Cavarero’s critique, I disagree with Diotima’s ultimate assessment of physical pregnancy as a “lower” form of pregnancy, as this assessment annihilates maternal power (Cavarero, 1995, 94). Still, what is crucially important is that Diotima reminds us that pregnancy can and should stand center—as a liminal experience—in our philosophical accounts. 5  As Frost argues, “silence, isolation and uncertainty combine to augment the suffering of miscarrying women” (Frost et al., 2007, 1004). 6  Alison Reiheld analyzes miscarriage as a “liminal event.” As such, she establishes four categories within which this liminality is palpable: parenthood, procreation, death, and abortion (Reiheld, 2015, 9). 7  The incidence of early clinical pregnancy loss “is estimated to be 15% of conceptions with a significant variation according to age. Thus, the incidence ranges from 10% in women aged 20 to 24 years to 51% in women aged 40 to 44 years.” Overall, Larsen argues that 70% of all conceptions end in death prior to birth (Larsen et al., 2013, 2–3). 4

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further understanding and recognition to those caught in the grieving aftermath of miscarriage. In what way can the formerly pregnant woman mourn (i.e., how can the loss be present to her) if there is no question of a lost individual but rather a dissolving pregnant constellation? Since, in early pregnancy, the pregnant woman often does not yet stand in relationship to the fetus-to-be as its mother,8 and neither may there even be a fetus to whom to stand in relationship to (e.g., molar pregnancies),9 the loss experienced is incomparable to other personal losses such as losing a mother, child, or sibling. So, what does loss mean when it pertains to something devoid of concrete identity, either on its own or through a concrete relationship?10 In this chapter, I will show that Gilbert Simondon’s account of pre-individuation is a helpful tool to both conceptualize the pregnant city in its early formation and in its dissolution. Moreover, I will examine Simondon’s discussion of a metaphysics of life that focuses not on being, but on being-as-becoming—i.e., ontogenesis. Namely, in Simondon’s perspective, an individual is only relative because it is merely a result of a stage of a larger ontogenetic process that is itself pre-­individuated—not individuated (Simondon, 1992, 300). Accordingly, Simondon allows us to formulate the stage of early pregnancy as a process that interrupts and disrupts the individuated space of the physical unit, and that, in its interpellation, creates a bond between an individuated place (that of the individuated pregnant body) towards a pre-individual space. If birth is, in the end, a radical break with what I have called the pregnant city (with its newly instated communal milieu), then miscarriage brings one back to uneasily being held captive by an amorphous, marginal in-between porous temporal space that will not or cannot leap back towards our own individuation, the individuated life-to be, and a socially recognized altered collectivity. Recognition of the spell that this liminal temporal space holds is significant. It may bring further understanding and recognition to those caught in the ambivalent grieving aftermath of early pregnancy loss and miscarriage. As psychologist Pauline Boss has argued in her groundbreaking research on ambiguous loss, a culture’s

 It is the case that some pregnant women, in their first trimester of pregnancy, will experience themselves as a mother. However, since many might not even realize that they are pregnant, or might refute pregnancy or motherhood altogether, or may reserve the term “motherhood” for their experience post-birth, my focus here is on the fact that the pregnant woman does not often stand in relationship to the fetus-to-be as its mother. With thanks to Amber Griffioen for allowing me to add nuance to this point. 9  In molar pregnancies, there may be no, or only partial, fetal tissue. Molar pregnancies are distinguished in “complete” or “partial” molar pregnancies. In a “complete” molar pregnancy there is “no identifiable embryonic or fetal tissue.” They are based upon the fertilization of an “empty” egg (i.e., an ovum without genetic information) by sperm, whose genetic code is consequently replicated. Partial molar pregnancies usually involve an apparently normal egg, which is fertilized by 2 spermatozoa (Berkowitz & Goldstein, 2009, 1639). 10  It has been reported that “women who do experience fetal loss are not always grieving for the loss of the fetus for its own sake, but sometimes are grieving the loss of a relationship the pregnancy facilitated” (Kimport, 2012, 107). 8

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“tolerance for ambiguity” will aid those suffering from ambiguous losses in fostering resilience (Boss, 1999, 18)11 and reducing complicated grieving (Boss, 1999, 9–10).12 Although this chapter analyzes pregnancy loss through philosophical concepts that unearth the temporally frozen, liminal amorphous individuated/pre-­ individuated space that pregnancy loss occupies rather than through Boss’s psychological bifurcation between “normal” versus “complicated” mourning (Boss, 1999, 8–9),13 this chapter aligns with Boss’s general call for increased tolerance and resiliency in the face of ambiguity14—an ambiguity that Boss has shown has affected us all in relationship to the Covid-19 pandemic (Boss, 2021, 5–6).15

 In her book Ambiguous Loss, Pauline Boss focuses on the psychological treatment of ambiguous loss, but she also addresses the wider cultural beliefs that may make such ambiguous losses easier or more difficult to handle. In regard to pregnancy loss and shifting cultural beliefs over time, she writes: “Only recently have hospitals begun to recognize miscarriage and infant death as real losses that warrant grieving. In the past, nonrecognition of newborn loss made sense because infant mortality rates were so high. In most cultures, mothers and fathers were encouraged to defer attachment to their baby until they were sure the child would live. While such beliefs made sense historically, it is dysfunctional for women today to be expected to act as if nothing has happened when they experience a miscarriage or give birth to a stillborn” (Boss, 1999, 18). 12  Boss distinguishes “normal” grieving from “pathological” (or complicated) grieving, following the lines of Freud’s account on mourning. Those suffering from ambiguous loss often display signs of complicated grieving (Boss, 1999, 10). “In normal grieving, as Sigmund Freud wrote in 1917 in ‘Mourning and Melancholia,’ the goal of recovery is to relinquish one’s ties to the loved object (person) and eventually invest in a new relationship. This is the difficult work of mourning, but it is a process that is meant to end…. But a few people react even to clear-cut losses with what Freud called pathological melancholia, and what therapists today usually call melancholia or complicated grieving, in which a person remains stuck on and preoccupied with the lost object” (Boss, 1999, 9–10). 13  Boss distinguishes two kinds of ambiguous loss that both deal with individuated losses: (1) the losses of those loved ones perceived to be “physically absent but psychologically present” (e.g. missing soldiers, kidnapped children) and (2) those “physically present but psychologically absent” (e.g. loved ones suffering from Alzheimer’s dementia) (Boss, 1999, 8–9). 14  In my new book manuscript, Elemental Loss, this larger theme of ambiguous loss and shifting constellations is elaborated in terms of the elements of water, fire, air, and earth. Rebutting accounts of loss as an event or as pertaining to an individuated being, Elemental Loss thematizes ephemeral loss in terms of infinitesimal and slow changes occurring within an elemental constellation. I argue that many of these incremental changes have been mediated through what philosophers have called the classical elements of water, fire, air, and earth. By repositioning the meaning of loss on the level of contextual elemental constellations, I seek to redraw the boundaries of grief and mourning. 15  The Covid-19 pandemic provided Boss a new access point for grasping the ambiguity of loss in terms of broader societal frameworks unraveling, a theme which she elaborated in The Myth of Closure: “ambiguous losses are ubiquitous but rarely acknowledged because they are difficult to see, even by those of us experiencing them. While all loss is stressful, ambiguous loss adds additional stress because both the loss and grief are frozen” (Boss, 2021, 6). She addresses the need for us to “increase our tolerance for ambiguity.” Boss distinguishes two kinds of loss, physical and psychological (Boss 2021, 10–11). Boss also addresses the evolution of her own thinking, which developed from thinking about ambiguous loss on the level of the family, to include (within the context of the Covid-19 pandemic) not only a person or family but “a local community, or the global community” (Boss, 2021, 12). 11

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7.2 Scientific Accounts of Miscarriage: Thinking through the Definition, Etiology and Prevalence of Miscarriage The Oxford English Dictionary defines miscarriage as “the spontaneous expulsion of a fetus from the womb before it is viable” (Oxford University Press, 2022a, b, c). Its etymology, mis-carriage, conveys the sense of an improper, amiss, way of carrying or bearing from one place to another (Oxford University Press, 2022a, b, c). With the exception of ectopic pregnancies (i.e., pregnancies which take place outside of the uterus and which can be life-threatening due to internal bleeding), current medical definitions of miscarriage take a different trajectory; they highlight the factual determination of pregnancy and the lack thereof, tracing former presence through medical techniques such as ultrasound or microscopic evaluations. The revised 2005 terminology from the European Society of Human Reproduction and Embryology (ESHRE) informs the following definition used by Larsen: “the term clinical miscarriage is used when ultrasound examination or histological evidence has confirmed that an intrauterine pregnancy has existed” (Larsen et al., 2013, 1).16 As Larsen’s definition proves, medical science in distinction to cultural definitions does not define miscarriage in terms of spatial removal, exclusion (i.e., “expulsion”), or improper movement (i.e., “mis-carrying”). Instead, medical science focuses upon the emergence of nothingness out of a prior state of being. This state of emergent nothingness is further temporalized according to various intervals such that this loss is subdivided in losses that take place in the 1st trimester (i.e., “early” pregnancy loss) and those that take place in the 2nd trimester (i.e., “late” pregnancy loss) (Larsen et al., 2013, 1).17 What we can learn from this initial medical definition of miscarriage—as opposed to general cultural definitions—is that pregnancy loss is seen in terms of presence versus absence, and it is assessed according to temporal duration. Notably, the medical definition provided steers the (colloquial) question of (mis)placement into a question of disappearance. Thus, we are prompted to ask “how is it that a pregnancy prematurely falls apart?” If the focus is on those pregnancy losses that are most common (i.e., early pregnancy losses and those that are sporadic rather than recurrent18), then medicine’s answer is that most pregnancy losses are caused by abnormal chromosomal development of the fetus and specifically abnormal numbering of chromosomes. As Bardos writes, “the vast majority (60%) of

 Notably, Larsen et al. here focuses upon the milieu of the uterus for their definition of miscarriage, which thereby omits ectopic pregnancies. Ectopic pregnancies perhaps most easily reference the etymology of the term “miscarriage,” insofar as their sense of being “ectopic” involves the notion of being mis-placed or out-placed (ek-topos) (Larsen et al., 2013, 6–7). 17  “Clinical miscarriages may be subdivided into early clinical pregnancy losses (before gestational week 12) and late clinical pregnancy losses (gestational weeks 12 to 21)” (Larsen et al., 2013, 1). 18  Sporadic miscarriages are quantified as maximally two consecutive pregnancy losses; recurrent miscarriages are defined as 3 or more consecutive pregnancy losses (Larsen et al., 2013, 1). 16

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miscarriages are the result of aneuploidy [(i.e., the condition of having an abnormal number of chromosomes)]” (Bardos et al., 2015, 1313).19 If we follow this medical line of reasoning, namely that the occurrence of “serious structural malformations or chromosomal aberrations [are] incompatible with life” (Larsen et al., 2013, 2), then the most common forms of pregnancy loss are not pathological phenomena but are actually the very opposite, especially once they are viewed from a biological-evolutionary perspective. In that instance, they are part of a true “‘physiological’ phenomenon” (Larsen et al., 2013, 2). For, what may experientially or existentially be viewed as a pathos (i.e., a loss associated with suffering, disease, or qualitative change as the ancient Greeks would have it) is, medically speaking, merely meaningful as a physiological preservation of successful life— i.e., a life that is developmentally viable and successfully functional. The aim, being successful survival of a species and reproductive adaptability to circumstances, provides the reason for a life that, physiologically and evolutionary speaking, may paradoxically include miscarriage or infertility as studies on the intertwining factors of environment, evolution, and reproduction show (Vitzthum, 2009, 126).20 Along these lines, Larsen speaks of this kind of miscarriage as “representing nature’s quality control system, preventing embryos with several abnormalities in most cases from progressing beyond the peri-implantation period.” (Larsen et al., 2013, 8).21 If we follow Larsen’s argument here, then what does this yield in terms of the meaning of pregnancy loss? Larsen and other contemporary embryologists focus on the issue of viability and success of fertility. For them, what may otherwise be experienced as pathos or pathology is rendered here as physos or physiology— i.e., the way in which a living organism or bodily part functions.  Other possible causes which may underlie both sporadic and recurrent pregnancy loss are molar pregnancies, immunological dysregulation, thrombophilia, endocrine disorders, sperm DNA integrity, uterine malformations etc. Among these, another factor has come into view, namely that disruption of “the decidualized endometrium [that] acts as a sensor of embryo quality” [which] may “lead to implantation of embryos destined to miscarry.” In other words, if the decidual endometrium had been more selective, some embyros that were not viable would not have been implanted in the first place and would have prevented the stress associated with such miscarriage (Larsen et al., 2013, 1). 20  As Vitzthum argues: “The reproductive system is not designed, as Malthus had supposed, to keep chugging along unless prevented by incapacity, self-restraint, or some exogenous factor [(i.e., a factor originating outside of the organism itself)]. Rather, the biological mechanisms have been shaped by natural selection to function in a manner appropriate to context. The temporary suspension of reproductive investment [(i.e., the time and energy an organism infuses in reproduction)] is no more a failure of adaptation than the “freezing” (motionless) response of an animal faced by a predator is a failure of locomotory adaptations. Rather, even though it may reasonably be argued that legs are made for walking, by allowing the organism to be still in appropriate circumstances, the locomotory system is performing in a manner that increases the animal’s fitness [(.e.., in Darwinian terms of fitness as successful survival)]. The legs are functioning adaptively, even if they are not in motion. Likewise, adaptive reproductive functioning in the human female can include not conceiving” (Vitzthum, 2009, 126). 21  And, Larsen continues: “Should this quality control be disrupted, such embryos may be allowed to establish implantation long enough to present as clinical pregnancy before failing, resulting in recurrent miscarriage” (Larsen et al., 2013, 8). 19

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If Larsen’s medical training makes her, like other embryologists, focus on the viability and success of life and birth, speaking of preserving “quality control” rather than acknowledging loss, then this has serious repercussions for the meaning of miscarriage. What is emphasized in this account is a futural trajectory of the species and its general “physiological” adaptation to evolving lives and environments. What is overlooked, however, is the notion of pathos. Even if some form of emerging life would not have been viable, either because of itself or because of its milieu or the intertwinement between being and milieu, then it is undeniably still the case that some form of emergent life and/or some peculiar pregnant relationship has been lost. This is true even if this form of emerging life or this emerging pregnant constellation would not have been viable given the circumstances. What medicine thereby overlooks and ignores is the interpellation of a different set of questions that early pregnancy loss poses. Rather than focusing upon the species and its successful survival and adaptation to the environment, early pregnancy loss prompts us to think through relational ontogenesis to contemplate losses of a pre-reflective nature that never even became personal relationships. It asks us to ponder loss at the intersection of nothing, being, and becoming. It thereby also asks us to consider grief beyond the finite individual, and to feel the accumulated weight of a loss we share but do not possess. Similar to how birth offers a link “from living individuals to life itself” (Cavarero, 1995, 114), early pregnancy loss opens up a conceptual path to grasp the link between finite losses to amorphous loss itself— i.e., a loss deep and pervasive and intimately connected with the origins of life. To expand, the loss that is early pregnancy loss is felt not just now but temporally built upon what may be called a “graveyard” of losses. Over and against public opinion which mistakenly believes miscarriage is rare (Bardos et  al., 2015, 2),22 miscarriage is rather common and part of what Larsen calls the “pregnancy loss iceberg” (Larsen et al., 2013, 3), with an estimated “70 % of conceptions [that] are lost prior to live birth” (Larsen et  al., 2013, 3). If this is the case, namely that the large majority of conceptions ends up in (some form of) pregnancy loss, then the weight of this loss may be heavier than we thought. How can we thematize this seemingly infinite past of loss upon which our present and future lives may be built? And, once again, how can we create a conceptual, affective place from out of which

 As Bardos writes in his analysis of the survey distributed to more than 1000 participants in the US across the USA, “respondents to our survey erroneously believed that miscarriage is a rare complication of pregnancy, with the majority believing that it occurred in 5 % or less of all pregnancies. There were also widespread misconceptions about causes of miscarriage. Those who had experienced a miscarriage frequently felt guilty, isolated, and alone. Identifying a potential cause of the miscarriage may have an effect on patients’ psychological and emotional responses” (Bardos et al., 2015, 1313). In discussing the data, Bardos et al., describe some of these misconceptions, namely that “twenty-two percent of participants incorrectly believed that lifestyle choices such as drug, alcohol or tobacco use during pregnancy are the single most common than genetic or medical cause” (p. 1315), or that the “majority of participants believed that a stressful event (76%) or longstanding stress (74%) were also causes of miscarriage” (p. 1316). 22

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we can grieve those losses that never even became part of our personal relationships since they never became individuated?23

7.3 Grief, Relationality and Ambivalence: Rethinking Loss with Freud, Boss and Butler To navigate toward a place from out of which we can theorize the ambivalence of early pregnancy loss lucidly, it is crucial to rethink the theoretical tools that allow us to grasp our affective relationship to loss in the form of grief. As a major theorist on loss and mourning, Freud’s position offers a helpful starting point, although it is particularly in the reformulated form of Pauline Boss’s work on ambiguous loss (indexing presence and absence) and Judith Butler’s work on mourning (emphasizing the relational ties uncovered by grief) that more tools for my own analysis of early pregnancy loss can be found. Initially, in “Mourning and Melancholia” (1917), Freud argued that “normal grief” (as opposed to melancholia) consisted of a successful process of breaking with the bonds of what one loses. Successful grief includes the idea that over time “all libido shall be withdrawn from its attachment to that object” (Freud, 1964, 244). The result is that “when the work of mourning is completed, the ego becomes free and uninhibited again” (Freud, 1964, 245).24 Thus, in his early theory, Freud ascertains that successful grieving is a process where the lost object is gradually transformed from a desired object to one no longer desired, thereby finalizing the transition from presence through absence through the transformation of our own desires. In his later writings, however, Freud came to realize that mourning can and should include a living desire to the lost object, such that the “essential” task of mourning actually should be the inclusion (or “incorporation”) of the lost object (Butler, 2003, 11). This implies that Freud, in his evolving theory of grief, came to acknowledge the enduring (“infinite”) presence of loss, whereby he thus “registers the endlessness of normal grieving” (Clewell, 2004, 43) and the acknowledgement of traces of loss that continue to undermine an autonomous sense of the present self. Along these Freudian lines, many healthcare practitioners today support those

 This is particularly pertinent to the case of molar pregnancies, where (at least in the case of complete molar pregnancy) no fetal tissue is formed (Berkowitz & Goldstein, 2009, 1639). 24  For Freud, “normal” or successful mourning melancholia is fully conscious, whereas melancholia is characterized by an object-loss that is “withdrawn from consciousness.” (Freud, 1964, 245). The experience of loss is also radically different, according to Freud, where in mourning “it is the world which has become poor and empty”, in melancholia “it is the ego itself” (Freud, 1964, 246). Attempting to grasp this difference, Freud reflects, using images of darkness and light, that in melancholia the “shadow from the object fell upon the ego, …[i]n this way an object-loss was transformed into an ego-loss.” 23

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grieving by highlighting the importance of “continuing bonds,” and seeking “ways to continue attachment” (Worden, 2015, 98). Importantly for this paper’s argument, Freud’s thoughts on loss and mourning find continuity in Pauline Boss’s most recent ideas on ambiguous loss and mourning. In The Myth of Closure, Boss argues for the fundamental importance of rebutting the myth of closure, thereby stating that in the case of ambiguous loss “choosing to accept the paradox of absence and presence is less painful than trying to find closure” (Boss, 2021, 57). Thus, ambiguous loss involves engaging in a dialectic without synthesis (Boss, 2021, 61), a sense of “both/and” thinking (Boss, 2021, 67). In her writings on mourning, Judith Butler has further pushed these Freudian lines, not only to acknowledge the enduring trace of loss, but also to emphasize the enigmatic dimension of grief and how grief reveals our relational nature. Beyond the simple question of what or who has been lost, Butler underlines, in “Violence, Mourning, Politics,” how mourning and desire index that, rather than being autonomously constituted, we are always also relational beings. Accordingly, what one loses is not only the person lost, but also a relationality that precedes and goes beyond individuality: [P]erhaps what I have lost ‘in’ you, that for which I have no ready vocabulary, is a relationality that is neither myself nor you, but the tie by which those terms are differentiated and related. (Butler, 2003, 13)

In Butler’s mind, this relationality, or “primary sociality” as she also terms it (Butler, 2003, 17), comes fully to the fore in mourning, as we feel a level of dispossession that undoes us. This dispossession is aggravated by the ineffable quality of not knowing what is lost: If mourning involves knowing what one has lost (and melancholia originally meant, to a certain extent, not knowing), then mourning would be maintained by its enigmatic dimension, by the experience of not knowing incited by losing what we cannot fully fathom. (Butler, 2003, 12)

Butler’s idea is that grief reveals a primary sociality—a founding communal relationship—that precedes and enables the distinguishing yet connected identities of you and me. This idea is helpful in grasping grief as a processual form of mourning that confronts us with the realization that we have never been as autonomous as we thought we were, as well as realizing having lost a deep relational sense of being. Mourning, in Butler’s view, thus crucially involves the sense of being undone as the enigma of our relational sense of being becomes fully felt. Since we do not quite know what or who we have lost, mourning continues living this enigmatic, relational sense of being. If we begin relating Boss’s and Butler’s ideas on mourning to the phenomenon of early pregnancy loss, then both (1) Boss’s notion of continued ambiguous loss indexing presence and absence, and (2) Butler’s notion of fundamentally being undone as our primary sociality unravels, are helpful. Still, Boss’s and Butler’s accounts have shortcomings too. They are both too much focused on individuality—even if the focus is on individuality-as-emerging alongside the other.

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This is where the crucial ontological and conceptual question needs to gain traction. What if the focus of early pregnancy and early pregnancy loss is precisely that of a certain ontogenetic process and relationship that predates the formation of individuals? What if it taps into a communal undercurrent that is beyond the acknowledged space of social community? What if we need to go further than Butler, who is keen to address the invisibility of certain losses, but fills in the space between autonomy and relationality by speaking of the “social conditions of our very formation” (Butler, 2003, 13), and thereby does not go so far as to address the space of mere emergent relational being and its loss? What if the losses we experience in pregnancy loss are not on the “same” level of concrete, socially affirmed, individuated losses, but instead tap into another form of invisibility than Butler discusses: an unstable undercurrent of loss (i.e., an indeterminate flow where relationships are constantly emerging and being lost)? The conceptual shift that is needed to address pregnancy and pregnancy loss implies that some of Butler’s other ideas about mourning—specifically, her idea of how recognition of grief may allow us to feel a shared human “social vulnerability” (Butler, 2003, 10), as well as her idea of making “grief itself into a resource for politics” (Butler, 2003, 13, 19)—are less applicable as well. Both the depth of the grief of pregnancy loss, and the silence around and misrecognition of pregnancy loss, make it difficult if not impossible to speak of grief after pregnancy loss as a catalyst for personal and political transformation and action. Accordingly, I argue that the conceptualization of pregnancy loss and its resonating grief needs to find another philosophical access point to deepen its theory. One such access point may be found in the term “grief” itself. The etymology of the English term “grief” traces grief, via the French and the popular Latin, to the “classical Latin gravāre, < gravis heavy, grave adj.” (Oxford University Press, 2022a, b, c). Interestingly, feeling grief—i.e., feeling distressed and pained—and being pregnant (“gravid,” from “Latin gravidus, < gravis burdened, heavy” (Oxford University Press, 2022a, b, c)) share a mutual etymological root in the notion of gravity, or “heaviness.” While this “heaviness” may not be as strongly physically felt in early pregnancy loss (1st trimester) as in later pregnancy loss (2nd trimester), the 1st trimester entails radical foundational changes and may hold the preparation to such a shift in heaviness. More crucially, however, changes in the 1st trimester hold the physical and metaphysical clue to finding a different point of “gravity” in the pregnant body—a shift in (hormonal, vascular, affective, etc.) balance. Medical scientists phrase this shift in the pregnant body as transformation from a state of homeostasis to one of allostasis, i.e., “changing an internal state in support of viability” (Power & Schulkin, 2012, 164). Relatedly, they render transformations to emerging life and the placenta in terms of allogenesis, namely the growth and creation of a whole new form of life (Power & Schulkin, 2012, 164; Oele, 2020, 90). Rendering this initial shift in balance as a shift from homeostasis to allostasis provides meaning to the subsequent (hormonal, vascular, affective) “shift” once the pregnancy ends. If early pregnancy shifts the center of gravity, how can the additional shift implied by pregnancy loss, one in which the state of allostasis is undone, be grasped? Surely, it would be facile to speak of this as a simple “shift back in

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time,” back from “other-state” (allostasis) to “same-state” (homeo-stasis) since scientific research proves that any pregnancy, whether viable or not, leaves lingering traces in the (formerly pregnant) body.25 Moreover, even if they largely “restore” along the lines of previously held physiologies, so-called (hormonal, vascular, affective, etc.) shifts hold residue and have a certain duration. Thus, etymological research on grief (as entailing shifts in balance) along with medical scientific research (on lingering traces and important physiological transformations in the early trimester) reveal that we would do well to examine the broader ontological forces that inform and transform the early pregnant communal interval. The next section will discuss Simondon’s account of ontogenesis to grasp the complex and multitiered ontological emergence that is early pregnancy formation. In my view, Simondon’s account offers a helpful complement to Boss’s and Butler’s account of grief, precisely by conceptualizing an even deeper level of complexity and relationality. Simondon has much to offer to a metaphysics of pregnancy since his thinking is focused on emergence, namely on being-as-becoming (i.e., ontogenesis). His account helpfully twists pre-conceived notions of individuality to make place for deeper notions of interrelationship and pre-individuation (Simondon, 1992, 300).

7.4 The Dissolution of the Pregnant City: Miscarriage and Pre-individual Relationality If we consider the physical and metaphysical shifts of balance in early pregnancy, and the additional shift implied by pregnancy loss, then what does that mean for grasping the philosophical meaning of the dissolution of the pregnant city and its grieving aftermath? If it is the case that theorists of loss have mostly focused on individuated losses (even if they ultimately claim to see loss as also being relational) then what does this mean for the need to formulate a new theory of loss? What if the

 For example, current scientific research demonstrates the fascinating phenomenon of microchimerism. Microchimerism is the condition where genetically diverse cell populations co-exist within one individual, and where “the chimeric population constitutes < 1 % of the total number of cells” (Van Halteren et  al., 2013, 132). The most common form of natural microchimerism is through placental exchange of cells in pregnancy. This implies that every human life, since it is born out of pregnancy, carries such diverse cell-populations. Children may carry cells from their mothers, but also from (born or unborn) older siblings. However, natural microchimerism can also happen in spontaneous abortion, in the case of transfer between twins, and possibly cell transfer “from an older sibling or previous pregnancy of the mother” to the fetus (Nelson, 2012, 421–422). Thus, pregnancy leaves its material traces both in the pregnant and nascent body, with genetic cells from pregnant lives mixed into nascent life, and with nascent life mixed with pregnant lives. Moreover, these cell-populations do not simply “sit” there. They fluctuate in different periods of one’s life and can actively influence both the health and the pathologies of the lives they are circulating in. 25

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focus of early pregnancy and early pregnancy loss is precisely that of a certain ontogenetic process and relationship that predates relationships between individuals? Following upon our account of the etymology of grief, which revealed shifts in balance and enduring traces beyond the pregnant interval, I think that Simondon’s account of pre-individuation may be a helpful tool to conceptualize the pregnant city in its early formation, because it thematizes the pre-individual place that pregnancy taps into. For Simondon, [T]he individual is to be understood as having a relative reality, occupying only a certain phase of the whole being in question—a phase that therefore carries the implication of a preceding pre-individual state, and that, even after individuation, does not exist in isolation, since individuation does not exhaust in the single act of its appearance all the potentials embedded in the pre-individual state. Individuation, moreover, not only brings the individual to light but also the individual-milieu dyad. (Simondon, 1992, 300)

In Simondon’s perspective, an individual is only relative in existence because it is only part of what he calls the “totality of the being,” and because it is merely a result of a stage of a larger ontogenetic process that in itself is not individuated. Individuation is only a “partial and relative resolution” (Simondon, 1992, 300). This entails that Simondon sees “being not as a substance, or matter, or form, but as a tautly extended and supersaturated system, which exists at a higher level than the unit itself” (Simondon, 1992, 301). Being, for Simondon, is neither a unit, nor can it be characterized by unity, since units or unities only come into existence after the process of individuation (Simondon, 1992, 301). With Simondon’s articulation of the pre-individual and the potentialities it entails, we may formulate the process of early pregnancy in the following way, namely as a process that interrupts and disrupts the individuated space of the physical unit, and that, in its interpellation, creates a bond between an individuated place (that of the individuated pregnant body) towards the pre-individual space. Pregnancy may thus be called the experience of a bridge, connective tissue, or a semi-­permeable membrane where the pull of a “relative reality” is felt ever so strongly. It is a plane of creativity that transpires through the individual yet is beyond it. This is a plane of emergence, namely a plane of potentialities without pre-determined teleologies. While she may not psychically be aware of this, a woman’s body in becoming pregnant is itself emphatically engaging with this relative reality, becoming part of a new creative regime that it does not know but simply embodies. The new creative regime that emerges is reflective of the status of the pre-­ individual. The pre-individual is “something beyond a unity and an identity, something capable of being manifested as either wave or corpuscle, matter or energy” (Simondon, 1992, 302). As Grosz clarifies, “the pre-individual has no individual nor collective contents (only potentials for individuation)” and is “the metastable order from which beings, or, rather, becomings, engender themselves” (Grosz, 2017, 172). In using the term “metastable,” a term inherited from nonequilibrium thermodynamics, Simondon aims to describe a state that “retains unexhausted potentials that require the generation of a new order to explicate or develop these potentials and keep them contained and cohesive” (Grosz, 2017, 173).

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If this thought is applied to early pregnancy, then the pre-individual regime that emerges perforates holes in the individuated, unified maternal body as well as in our conceptualization of pregnancy as a relationship between two individuated beings. What emerges is not a new collective togetherness since there is, at least initially, not yet togetherness between individualities (especially as there may not be a new ‘unit’ or unity yet of emerging life). Certainly, on the side of the (potential) embryo certain specific potencies may have arisen, but the larger landscape within which this operates is that of a new terrain: a pre-collective, pre-individuated metastable state that informs both pre-maternal and pre-fetal life. We could speak here perhaps of a “pregnant city,” but only in the sense of a city before its individuated inhabitants are formed since it mostly holds open opportunities for all future, emergent constituents. This means that, in the case of early pregnancy, a new regime takes hold that, given “the smallest perturbation… generates a powerful change in the system’s functioning, and enables it to ‘evolve’” (Grosz, 2017, 173). This metastable state that is the pre-individual thus “harbors a certain incompatibility within itself,” and it is through the process of becoming that we can, in retrospect, discern an abrupt capacity to double ourselves, “a capacity that beings possess of falling out of step with themselves” (Simondon, 1992, 300). Becoming, in this perspective, is not different from being, but is rather “one of the dimensions of the being, a mode of resolving an initial incompatibility that was rife with potentials” (Simondon, 1992, 301). This doubling—the falling out of step of the pre-individual—duplicates “the forces of the real within the emergent individual at a different level or order” and gives thereby rise to “new levels and orders within the real.” This enables the individual produced “to intervene and transform the pre-individual as its milieu” (Grosz, 2012, 40).26 The doubling that Simondon speaks of has special resonance for the process of pregnancy. Having instituted a new metastable pre-individual state, it is out of the process of doubling and falling out of step with oneself that being may allow for the emergence of various stages of becoming—of stages where the pre-­ individual can become both the (placental) and embodied milieu for maternal and fetal becoming. Pregnancy thus carries pre-individuated mimetic resonance by installing a pre-individuated regime, that in a so-called “successful” pregnancy also becomes transformed into a milieu that fosters both the growth of the body of the potential mother as well as the growth of the potential baby and the placenta. Pregnancy thus carries pre-individuated mimetic resonance across the various milieus of the pregnant city, unfolding potentialities that themselves unlock other various futural communal becomings. In more concrete terms, once the pre-­ individuated state becomes materialized as a milieu, we may distinguish at least three forms of communal places where aspects of the pre-individual feature. First (1) this is the new, present collective in terms of the pregnant city as we have  She continues: “The pre-individual is both individual and collective, both wave and corpuscle, both matter and energy, both form and matter, both space and time, both conceptual and material” (Grosz, 2012, 40). 26

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addressed it; (2) pregnancy may form the bridge to the past pre-individual communal place out of which the pregnant city emerges (for instance, in the form of (epi) genetic, contextual, or microchimeric traces); (3) pregnancy calls up, through material and (possibly) emotional and cognitive anticipation, the future of a new (physical and social) collective to be had after birth. If the pre-individual is duplicated, then it brings to the forefront the emergence of communal places and times and the possibilities that they give rise to. Thus, along the lines of Simondon’s thought, pregnancy indexes that any attempt at individuation is always fundamentally pre-collective and pre-individuated, which loosens up any expectations of holding pregnancy simply captive in the language of opposites such as individuation or collectivity, past/present/future, matter or form, space or time, or concept or material (Grosz, 2012, 40). (i) Consequences of Simondon’s theory for understanding early pregnancy loss: faltered leaps and frozen time Simondon’s account of the pre-individual and the process of ontogenesis holds promise for a more profound account of early miscarriage. Simondon’s theory allows us to think about pregnancy in terms of tapping into and reemerging from a pre-individuated space full of uneasy tensions and points of excess that are central to ontogenesis. If we follow this train of thought, early pregnancy loss involves (1) losing a bridge to a pre-individual space, and it entails (2) a confrontation with a form of loss that suspends the transition to a collective future. For Stiegler, following Simondon, the death of the individual involves a loss that “does not denigrate the collective,” but instead allows one to understand that each individuated psychic being “always carries forward, as originarily collective in this sense, going beyond itself, into a future that exceeds its own disappearance and to which it delivers its inadequation…” (Stiegler & Lebedeva, 2012, 189). Stiegler’s account is important for grasping early pregnancy loss since it reveals that it is so painful precisely because it involves losing a bridge to a pre-individuated place and “freezes” the process of the emergence of individuation before life can take a “leap” or rupture with its source, which would ultimately find resolution in a collective future. In early pregnancy loss, on the one hand, the formerly pregnant body moves forward into a future that is forever altered due to the microchimeric traces of the dissipating pregnant city in one’s body. Here, one’s body testifies to the past and to the different futures opened up by the dissolving constellation. On the other hand, the mourner is unable to return back to “normal” and/or finds no outright “hard” confirmation in social relations that one’s future has forever changed, which could make it very difficult to pull forward affirmatively into a collective future. Moreover, while so-called “successful” pregnancy seems to underline linear, teleological progression and emergence of individuation out of the pre-individual, early pregnancy loss shows us the messy nature of ontogenesis, precisely as it emphasizes the material space of ontogenesis with its tipping points that can go either way, its contingencies, its various points of excess, and its struggle between

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forces that coexist uneasily (Grosz, 2012, 39).27 If ever we thought birth is linear and teleological, then the “miscarriage iceberg” confronts us with the all-too-real, messy work of ontogenesis taking place around points of instability.28 The “tipping” point that in the case of a so-called “successful” pregnancy allows for a unification of being—i.e., the emergence of individuation, and the potential futural collectivity between potential parent and potential child—now makes itself felt in pregnancy loss as an imploded state of stagnant semi-stability that seemingly returns everything to its “old” state without that being the case (i.e., the bridge built to the pre-individual through pregnancy leaves behind an altered individual-­ milieu dyad). How may we, philosophically, address this altered individual-milieu dyad? What do the lack of words or rituals do to this altered interface within which we may live? If the pre-individuated space does not—at least not visibly or in socially recognized ways—leap into a successful new communal milieu while the formerly pregnant body may still be profoundly affected by its (invisible) altered traces in the individual-­milieu dyad, what effects does this entail? And might this account for increased isolation, fortified by cultural misrecognition and silence? If birth is, in the end, a radical rupture (Holland, 2017, 137),29 and specifically a rupture with what I have called the emergent pregnant city, allowing for a newly instated communal milieu, then early miscarriage brings one back to uneasily being held captive by an amorphous, marginal in-between porous space that will not or cannot leap: neither back towards our own individuation or that of the individuated life-to be, and neither towards a socially recognized altered collectivity. If we phrase this more carefully in terms of temporality, then pregnancy loss, in its liminality, can bring us to experience time not as seamless or unidirectional, but as interrupted. Early pregnancy loss may tap into what Wright calls “cracks in otherwise seamless time” (Baraitser, 2017, 9).30 While Wright’s angle into this topic is to critique moral or political disciplines for dominating our time slots, his research into alternative forms of time is pertinent in drawing attention to “transitory breaches in the very  Elizabeth Grosz writes: “[The pre-individual] generates forces which act upon each other, which generate tensions, points of excess, the development of a tipping point or form of emergence, forms of becoming that coexist at best uneasily. These points of instability are the sites around which individuality may emerge” (Grosz, 2012, 39). 28  Sara DiCaglio takes a productive theoretical approach to rethinking miscarriage, starting from the early development of the placenta. She argues the placenta holds “untapped potential as a theoretical object in development” (DiCaglio, 2019, 2). Similar to my engagement with Simondon, stressing anti-teleology in the messy work of ontogenesis, DiCaglio seeks to move beyond “models of wholeness” to stipulate that pregnancy can be considered “as a project unfolding in time, representing many potential processes, outcomes, and developmental turns…. A feminist theory of the placenta must include pregnancies that do not end in live births, must include the molar, the miscarried and the stillborn, as well as the otherwise differently formed placenta” (DiCaglio, 2019, 3). 29  As Holland writes: “Although birth is an organic process, it is also a rupture with the source, not a continuation of it, in that the result is an individual distinct from the mother” (Holland, 2017, 137). 30   Baraitser here refers to Stephen Wright’s argument about a “time without qualities” (Wright, 2009). 27

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core of collective existence, [i.e.] time slots still unfettered by moral or political discipline” (Baraitser, 2017, 9).31 And, similar to Wright, Baraitser contemplates different senses of time (e.g., a time that does not transgress but that seems to endure and persist, such as “staying, inertia, lack of flow of time”) (Baraitser, 2017, 11). It is exactly Wright’s and Baraitser’s accounts of time that hold special resonance for addressing the temporal dimensions of pregnancy loss. The sense of “temporal intervals” (equivalent to terrain vague) in Wright’s and Baraitser’s search for a time that lingers and is not productive, may have special application to the sense of a temporal “arrest” experienced after early pregnancy loss. Their accounts of temporal intervals allow for recognition of the process of grief after early pregnancy loss, with grief temporally being caught in time that, as Baraitser has it, is “alive to the potentials of not moving on….” (Baraitser, 2017, 92). Thus, altogether, Simondon’s account of ontogenesis offers a key insight into the messy process of pre-individual relationality that is broken off in early pregnancy loss. His account also opens up to grasp the peculiar notion of interrupted temporality within which the formerly pregnant body is caught up, namely a sense of a liminal time that cannot or will not leap back towards a former past nor forward into a new future.

7.5 Concluding Notes In this chapter, I have argued, starting from first person experience, that early pregnancy loss may confront one with a loss of words or concepts, due to the ambiguity and the enigma of its loss. Moreover, the topic of miscarriage is culturally silenced, compounding suffering. Understanding the frequency of such occurrences of early pregnancy loss (in terms of the “miscarriage iceberg”) adds to the existential need to conceptualize such losses as they bleed into life at its very emergence. The prevalent cultural discourse on loss, even when it deals with ambiguity, is focused upon individuation and personhood, which may complicate the grieving process in the case of early pregnancy loss. In searching for alternative epistemologies to address early pregnancy loss and its consequent grief, I have proposed the following conceptual pathways to elucidate the nature of this loss. 1. Early pregnancy loss may be understood in terms of the dissipation of a pregnant constellation, thereby putting less emphasis on losing a “being” but rather a sense of participation. This clarifies the kind of loss involved but does not yet completely explain what kind of relationality is lost. 2. The grief involved in early pregnancy loss benefits from the Freudian-inspired theories of Pauline Boss and Judith Butler, who emphasize that grief entails absence and presence (Boss) as well as a deep loss of identity given the loss of relational ties that inform identity (Butler). This deepens the account of grief but does not precisely address the loss of mere emergent relationality. 31

 Quoting Wright (2009), 129.

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3. Following Gilbert Simondon’s theory on ontogenesis, pregnancy loss involves losing a bridge to a pre-individual relationality, due to which the formerly pregnant body cannot easily leap “back” into former forms of individuation nor leap forward into a socially recognized altered collectivity. This account is able to clarify the kind of relational loss involved in early pregnancy loss. 4. Early pregnancy loss may entail a peculiar form of interrupted temporality, which, in line with Wright’s and Baraitser’s accounts of time, conveys a sense of being stuck in a temporal interval that cannot leap backwards nor forward into a future or futures. By bestowing attention on the process of ontogenesis that, in the case of human conception, predominantly operates between points of excess and complex material-­ environmental forces operating in instability, we find tools to speak about early pregnancy loss and to give voice to unnamed relationalities that began but ultimately dissolved. To reform the theorization of early pregnancy loss grief work, what needs to emerge is a discourse that can address losses of unnamed emergent relationalities that address the indeterminate flux of relentless and messy ontogenesis, where contingency and anti-teleology prevail rather than performance of distinct, preformatted teleologies. To mourn early miscarriage may thus mean to acknowledge the enigmatic dimensions of our shared relationality that cast us into an unknown future built upon a graveyard of loss. It may also entail recognizing—and (re)appreciating—the creative processes of forming relationships, even if those relationships were pre-­ conscious or pre-individuated and were never, or are ultimately not, viable. While many accounts of loss and grief focus on the space of humanism and the loss of a specific individual—losing someone or something that is on the “same stratum” so to speak—my account has tried to emphasize the involvement of interrelations that precede individuality and that therefore address a different kind of loss. Importantly, to learn how to theoretically address early miscarriage with a richer philosophical discourse may hold a future promise, namely to ease the pain of those suffering from early pregnancy loss and, more generally, allow for a profound insight: to acknowledge the mesmerizing, if enigmatic, pre-individual material undercurrent of our lives and thereby to acknowledge the deeper foundations of messy, accidental, concrete ontogenesis out of which we ourselves have emerged and to which we, ultimately, will return.32

 I am grateful to the editors of this volume, Susi Ferrarello and Elodie Boublil, for their kind invitation soliciting my contribution. Over the past few years, my philosophical account of miscarriage has gone through various iterations, benefiting from conference and roundtable feedback (PACT 2017; PhilosSOPHIA 2019; New Voices: Women and their Body 2022) and conversations with friends and colleagues. I would like to particularly thank Geoff Ashton, Jorge Aquino, Tyler Carson, Sara Cohen Shabot, Michael Eng, Amber Griffioen, Josh Hayes, Tamara Kneese, Gerard Kuperus, David Macauley, Shaone Mallory, Sheri McClure-Baker, Nicole Miglio, Robert Mugerauer, Eva Räpple, Jeffrey Siemers, Elizabeth Sikes, and Peter Steeves. Finally, I owe special thanks to Daniel O’Connell for his imaginative and insightful research support, and to Nico González for his detail-oriented editorial work. 32

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References Baraitser, L. (2017). Enduring time. Bloomsbury. Bardos, J., Hercz, D., Friedenthal, J., Missmer, S. A., & Williams, Z. (2015). A national survey on public perceptions of miscarriage. Obstetrics & Gynecology, 125(6), 1313–1320. Berkowitz, R.  S., & Goldstein, D.  P. (2009). Molar pregnancy. The New England Journal of Medicine, 360(16), 1639–1645. Boss, P. (1999). Ambiguous loss: Learning to live with unresolved grief. Harvard University Press. Boss, P. (2021). The myth of closure: Ambiguous loss in a time of pandemic and change. W.W. Norton & Company. Butler, J. (2003). Violence, mourning, politics. Studies in Gender and Sexuality, 4(1), 9–37. Cahill, A.  J., Norlock, K.  J., & Stoyles, B.  J. (2015). Editors’ introduction. Journal of Social Philosophy, 46(1), 1–8. Cavarero, A. (1995). In spite of Plato: A feminist rewriting of ancient philosophy (S. Anderlini-­ D’Onofrio, & Á. O’Healy, Trans.). Routledge. Cavarero, A., & Bertolino, E. (2008). Beyond ontology and sexual difference: An interview with the Italian feminist philosopher Adriana Cavarero. Differences: A Journal of Feminist Cultural Studies, 19(1), 128–167. Clewell, T. (2004). Mourning beyond melancholia: Freud’s Psychoanalysis of loss. Journal of the American Psychoanalytic Association, 52(1), 43–67. DiCaglio, S. (2019). Placental beginnings: Reconfiguring placental development and pregnancy loss in feminist theory. Feminist Theory, 20(3), 283–298. Freud, S. (1964). Mourning and melancholia. In The standard edition of the complete psychological works of Sigmund Freud, volume XIV (1914–1916): On the history of the psycho-analytic movement, papers on metapsychology and other works (J. Strachey, Trans., & Ed., pp. 243-258. Hogarth Press and the Institute of Psycho-Analysis. Frost, J., Bradley, H., Levitas, R., Smith, L., & Garcia, J. (2007). The loss of possibility: Scientisation of death and the special case of early miscarriage. Sociology of Health & Illness, 29(7), 1003–1022. Grosz, E. (2012). Identity and individuation: Some feminist reflections. In D. Boever, A. M. Arne, J.  Roffe, & A.  Woodward (Eds.), Gilbert Simondon: Being and technology (pp.  37–56). Edinburgh University Press. Grosz, E. (2017). The incorporeal: Ontology, ethics, and the limits of materialism. Columbia University Press. Haraway, D.  J. (2016). Staying with the trouble: Making Kin in the Chthulucene. Duke University Press. Holland, N. (2017). Nature (or not) in Heidegger. In G. Kuperus & M. Oele (Eds.), Ontologies of nature: Continental perspectives and environmental reorientations (pp. 135–157). Springer. Kimport, K. (2012). (Mis)understanding abortion regret. Symbolic Interaction, 35(2), 105–122. Larsen, E. C., Christiansen, O. B., Kolte, A. M., & Macklon, N. (2013). New insights into mechanisms behind miscarriage. BMC Medicine, 11(154), 1–10. Layne, L. L. (2003). Motherhood lost: A feminist account of pregnancy loss. Routledge. Nelson, J.  L. (2012). The otherness of self: Microchimerism in health and disease. Trends in Immunology, 33(8), 421–427. Oele, M. (2017). Openness and protection: A philosophical analysis of the placenta’s mediatory role in coconstituting emergent intertwined identities. Configurations, 25(3), 347–371. Oele, M. (2020). E-co-affectivity: Exploring pathos at life’s material interfaces. State University of New York Press. Oxford University Press. Miscarriage, n. Oxford English Dictionary. Last modified March, 2022a. https://www.oed.com/view/Entry/119255?redirectedFrom=miscarriage#eid Oxford University Press. Etymology, n. Oxford English Dictionary. Last modified September, 2022b. https://www.oed.com/view/Entry/64893?redirectedFrom=Etymology#eid

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Oxford University Press. Gravid, adj. Oxford English Dictionary. Last modified March, 2022c. https://www.oed.com/view/Entry/81046?redirectedFrom=Gravid#eid Power, M.  L., & Schulkin, J. (2012). The evolution of the human placenta. John Hopkins University Press. Reiheld, A. (2015). ’The event that was nothing’: Miscarriage as a liminal event. Journal of Social Philosophy, 46(1), 9–26. Scuro, J. (2017). The pregnancy [does-not-equal] childbearing project: A phenomenology of miscarriage. Rowman & Littlefield International. Simondon, G. (1992). The genesis of the individual. In J. Crary & S. Kwinter (Eds.), Incorporations (pp. 297–319). Zone Books. Stiegler, B., & Lebedeva, K. (2012). The theatre of individuation. In D.  Boever, A.  M. Arne, J.  Roffe, & A.  Woodward (Eds.), Gilbert Simondon: Being and technology (pp.  185–202). Edinburgh University Press. Van Halteren, A. G. S., Sedlmayr, P., Kroneis, T., Burlingham, W. J., & Lee Nelson, J. (2013). Meeting report of the first symposium on chimerism. Chimerism, 4(4), 132–135. Vitzthum, V. J. (2009). The ecology and evolutionary endocrinology of reproduction in the human female. Yearbook of Physical Anthropology, 52, 95–136. Worden, J.  W. (2015). Theoretical perspectives on loss and grief. In J.  M. Stillion & T.  Attig (Eds.), Death, dying, and bereavement: Contemporary perspectives, institutions, and practices (pp. 91–103). Springer. Wright, S. (2009). Time without qualities: Cracking the regime of urgency. In A. Harutyunyan, K. Hörschelmann, & M. Miles (Eds.), Public spheres after socialism (pp. 129–132). Intellect.

Chapter 8

K(in)Vulnerability: Indigenous and Anthropocene Perspectives on Kin and Vulnerability Gerard Kuperus

8.1 Introduction Ever since Descartes proclaimed that science makes us the masters and possessors of nature we have seen ourselves as less vulnerable beings, as detached from the natural world.1 In our mind we seem to regard ourselves as not being part of the world of generation and decay, and thus we seem to hope to escape this cycle. It is, arguably, not different from Socrates’ hopes that his soul remains after the body dies, yet modernity brings its own mindset, in some ways very different from the Ancient one. Heidegger discusses the redetermination of things within modern times as opposed to ancient perceptions: While Aristotle finds that things possess certain inherent qualities, such as their proper place in the universe (a rock moves down, smoke up), modern physics redetermines natural entities as being moved by laws of nature that are external to it (See Heidegger, 2010). A rock does not have some inherent quality to move towards the earth, it is moved by gravity, determining the rock to be a passive entity, manipulated by whatever forces it encounters. Within modernity we can consider ourselves as another external force, manipulating the passive entities of the natural world: rivers, mountains, trees, even animals.  Bruno Latour makes the point that starting with the heliocentric system and the realization that the earth is not at the center of the universe, humanity has regarded our planet as nothing special. See: (Latour, 2017). The point seems to be the opposite of Descartes’ and yet both provide decentralized perspectives in which anything is possible. 1

G. Kuperus (*) Department of Philosophy, University of San Francisco, San Francisco, CA, USA Laudato Si’ Institute, Department of Philosophy, Theology and Religious Studies, Radboud University, Nijmegen, Netherlands e-mail: [email protected]; [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 E. Boublil, S. Ferrarello (eds.), The Vulnerability of the Human World, Philosophy and Medicine 148, https://doi.org/10.1007/978-3-031-41824-2_8

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Kinship with animals, trees, or even rocks seems impossible, even while our scientific stories clearly show interconnectedness in terms of among others DNA or theories of life. In comparison to the Ancient Greeks, Heidegger makes a valid point. And it is indeed often the Greeks who are regarded as the roots of all our thinking. Yet, many of the places that we have manipulated, including the land that is today known as the United States, were not occupied by Greeks, but by indigenous cultures. In the case of Native American tribes, many refer(red) to this place as Turtle Island, a name based on a myth that had animals collaborate in order to create the first bit of land on the back of a turtle. These animals form the very basis for the relation to this shared land on which we all live. The notion of kin that I discuss in this paper, is partially formulated within the context of the Turtle Island myth. It is not necessarily a blood relationship. In the version of the myth told by Robin Wall Kimmerer, called “Skywoman,” a pregnant woman falls from the sky.2 The animals make land for her to live on. While we are all descendants of Skywoman, a blood relation to the animals is lacking, as opposed to “our” Darwinist approach. DNA research relates us to animals, trees, and fruits. And yet, as opposed to the indigenous cultures discussed in this chapter, even while our science indicates relationships, we fail to recognize the trees and animals as kin. In this chapter I work with a thesis that is perhaps best described as a suspicion: the idea that in the modern Western mindset we find (1) passive entities ready to be manipulated and (2) a strong sense of agency in the form of mastery on the human side of things. We have attempted to make ourselves into beings that are not vulnerable. In this modern mindset we seem to have a fear of losing this invulnerability. Thus, we remain strong, we think, by not recognizing kinship with the natural world. If a forest is seen as our kin, we would mourn the loss of that forest. We might avoid such mourning by making sure no one would hurt our own relatives. Likewise, if the river is my kin and it catches fire because of the amount of pollutants dumped into it, I am deeply hurt. Yet without such ties, we have lost this sense of vulnerability as well as the strength that is rooted in kinship. To reverse the argument: if we experience a sense of loss when trees are cut, or a mountaintop is removed, perhaps a sense of kinship lies at the basis of that feeling of loss. At the foundation of our suffering along with the forest lies a sense of kinship. I thus suggest that the ultimate challenge of the Anthropocene (or rather to get out of it) is to make ourselves more vulnerable. Kinship, I argue, is not only a making oneself vulnerable, it also makes one invulnerable. Moreover, a personified world of natural entities transforms our sense of vulnerability and will lead us to step beyond the dichotomy of vulnerability and invulnerability. I will work in the following with a combination of “Western science” sources, in particular Donna Haraway, and different indigenous sources, such as the Tlingit Nation of South East Alaska, the Citizen Potawatami Nation as represented by Kimmerer, and Australian aboriginal thinking as discussed by Yunkaporta, along with Zen Buddhist ideas. Through these thinkers I suggest that vulnerability and invulnerability (as well as pain and joy) are not to be seen in a dichotomy.  See “Skywoman” in: (Kimmerer, 2020).

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8.2 Land and Community We can start the exploration of vulnerability in relationship to the natural world, by reflecting on our direct experience of land. I myself am a sailor and am always aware of my vulnerability in the midst of water, wind, shore, or shoals underwater. A person hiking can experience the limitations of one’s body, blisters developing, exhaustion coming up, while the mind feels vulnerable in terms of worries about being lost, water and food supplies, and the feeling of insignificance over against a seemingly never-ending landscape. Kin can help here. A famous line from Richard Nelson’s Make Prayers to the Raven suggests that the Koyukon are “never truly alone” because the forest is full of persons (Nelson, 1986, 14). His work often reflects on the connections and kinship we have with the land, and we see that the landscape itself is full of wisdom. In The Island Within he reflects how he has learned from his Koyokon teachers: “I am never alone in this wild forest, this forest of elders, this forest of eyes” (Nelson, 1991, 52). His own teachers not only taught him how to be here, but this teachers are here, part of the landscape. As we shall see in the last part of this chapter, the elements in the landscape can be teachers. Kinship occurs in the exchange between the land and us, in which decaying and becoming play an essential role. Reflecting on the process of leaves and pine needles that for millennia have fallen into the forests, Nelson writes “Digested by the forest itself, and dissolved into the tea-colored streams that run towards the island’s shore. The thought makes me feel that I truly belong here – that I, too, hold membership in this community – because all of us share the same fate” (Nelson, 1991, 51). Being part of the processes of the earth in which impermanence is key. We are extremely vulnerable by being impermanent, yet this very insight of being part of the whole creates a sense of strength, even of invulnerability, as I am now part of a larger community that is eternal. Nelson was able to come to these insights through living in a Koyukon community. He was able to keep this wisdom alive while living in Western communities, close to natural environments in which the trees and other animals were his teachers, as kin indeed. What constitutes this sort of kinship and how do most of us fail to find it? John Hausdoerffer suggests that the idea of kinship with land “requires kinship with people on (and through) the land” (Hausdoerffer in: Van Horn et al., 2021, 31). Without community among humans, community with the land cannot be found. Yet, in order for this community to be a true community it needs to be tied to the land. Those ties need to be stronger than singing how this land is my land. Instead of senses of private property, communal practices and ceremonies have to be directly tied to particular places. This can take different directions. For example, Bethany Barratt describes how after a ceremony in which land was deeded back to the Ponca people in Nebraska she recognizes how she belongs to the land in which her ancestors are buried and in which she herself will be buried as well. What makes such a connection real and lived is the connection “to each other, through our relationships and care for other living things, including the land” (Barratt in: Van Horn et al., 2021, 52). The community of humans, in this instance found in the ceremony, is the basis for extending or developing relationships to the land.

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Enrique Salmón uses the idea of Kincentrism as opposed to anthropocentrism. Kincentrism is an alternative to ecocentrism and biocentrism. Similar to these “-isms” it recognizes the intrinsic value of ecosystems and life. Yet, kincentrism puts the human being in relationship to ecosystems and life, by offering “a place for humans as co-creators and as a ‘direct keystone species’” (Hausdoerffer (citing Enrique Salmón) in: Van Horn et al., 2021, 35). The idea of co-creation and being an essential positive part of an ecosystem is established. Such a conception of being an integral part of a place as a keystone species is exactly lacking in the expedient economy of capitalism in which we see resources or in Heidegger’s words a “standing reserve” ready to be used. No healthy person would see their kin as a resource and would do anything to defend their kin from such abuses. It is through feelings of kin that we can perhaps speak of a genocide that extends beyond the human species. The land that is raped, is a destruction of the people whose identity is tied to it. As the Tlingit describe a place as “their sense of being” (Thornton, 2008, 3) we find an inner connection between an indigenous community and their place. We cannot be who we are without this place.3 Language is determining our relationship to the land as well as to ourselves. Robin Wall Kimmerer describes her Native language, Potawatomi, in which entities are expressed with a verb as opposed to a noun. A bay is not a thing, passive and determined by external forces. It is active, being a bay. “[W]iikwegamaa – to be a bay – releases the water from bondage and lets it live. ‘To be a bay’ holds the wonder that, for this moment, the living water has decided to shelter itself between these shores, conversing with cedar roots and a flock of baby mergansers. Because it could do otherwise – become a stream or an ocean or a waterfall, and there are verbs for that too” (Kimmerer, 2020, 55). The bay is, furthermore a personified entity: “in Potawatomi and most other indigenous languages, we use the same words to address the living world as we use for our family. Because they are our family” (Kimmerer, 2020, 55).This “grammar of animacy” lets the world of rocks, water, fire, mountains and places speak to us. In their own way, they are entities that are always acting and becoming, just like us. I will return to this idea in the last section.

8.3 Pain and Suffering John Hausdoerffer suggests that kinship with the nonhuman or more than human world involves a paradoxical relationship of resilience and vulnerability: strength or resilience in the form of connectedness with “things you can lean on” and vulnerability in the sense that there is loss and suffering (Hausdoerffer in: Van Horn et al.,  Different cultures acknowledge this. Confucianism acknowledges that I cannot be who I am without my family, colleagues, peers, and friends. I am determined through relationships. Likewise, Buddhism determines that there is no self outside the context of community (sangha). As discussed in the last section of this chapter, Zen Master Dōgen extends this idea to the mountains and waters, in which mountains are us and we are mountains. 3

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2021, 138). This is reflecting exactly the dual characteristic of kinship discussed above. We might seem to be stronger as independent and without the notion of kin. We are tempted to think that kinship, as opposed to independence, seems to equal vulnerability. Yet, the very recognition that we are not just individuals, and not just humans, makes us a part of the much larger processes of the universe, involving the cycles of life and death, of generation and destruction, or regeneration. Melissa Nelson puts this in terms of fullness and emptiness, the “inherent paradox in the universe” (Nelson in: Van Horn et al., 2021, 138). She adds that sometimes “oppositions represent harsh divisions, but they often present a cosmic balance and the dance of harmony and disharmony” (Nelson in: Van Horn et al., 2021, 139). We can understand this in terms of Kinship in this sense of being connected to everything. It is a realization of a relatedness that lies beyond dualisms. “Through struggles and challenges and obstacles and losses, kinship drives us to continue to find the capacity to love and embrace the wholeness. It’s challenging, but it’s magical, too” (Nelson in: Van Horn et al., 2021, 139). Nelson here touches on another difficult aspect of interconnectedness. One feels kinship with those who love the same music, have similar political affiliations, or hobbies. Yet, it is harder to connect with those who seem to hate everything you love. We tend to speak to those with whom it is easy “to kin” and avoid the more difficult ones. It is easier to confirm our own beliefs, than to be challenged or to challenge others. Kinning, as Nelson suggests, is indeed challenging and it means putting oneself out there and taking risks. This is possibly tied to my earlier suspicion: is it the case that in our contemporary divided world, our ego, and our narcissistic tendencies are a strategy to step away from vulnerability. As opposed to kinship that opens to others, we are herd animals that exclude and are part of groups that confirm our fragile egos. Western culture provides an absolute status to the self which even remains after our bodily existence. To provide a Nietzschean reading (one of the many counter or nomadic thinkers of the West): isn’t all philosophy a crutch, a sedation, that keeps us standing while we are utterly sick (“preface,” Nietzsche, 2006). We do everything possible to keep the fragile ego from falling apart. Denying interdependence with the rest of the world is a strategy to avoid vulnerability. Yet, is this separation from animals, rocks, ecosystems, and human beings ultimately making us more vulnerable? Perhaps we can only become who we are through kinning, by recognizing that the ego shaped through the herd is not who we are. The Nietzschean reading might help us to confront the vulnerability-­ invulnerability dichotomy. Pain and joy, we learn from Nietzsche, are not opposites. Nietzsche addresses the pain of philosophy, the pain of isolation, and loneliness, yet argues for joy, or gay science. Zarathustra is kinning with animals as well as the earth. It can be argued that his teachers are animals.4 Moreover, throughout Nietzsche’s work the emphasis is on our bodily animal being and it is not our reason that is our strength: our weakness, our kinship with animals, is our strength. Nietzsche recognizes that our strengths exist in what we consider vulnerability.

 See for example Joseph P. Vincenzo (2006).

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Even our mortality turns out to be a strength: live in such a way that you would want to live this life again and again (Nietzsche, 2006, 341). Our pain is our joy, or at least it gives birth to joy. From an indigenous perspective the relationship with pain and joy also takes the form of the pain of a culture. Curt Meine writes “it is never easy to turn a page on pain, much less on generations of pain” (Meine in: Van Horn et al., 2021, 133). His proposed remedy: “Renew kinship” that starts with “small acts that reconstitute our connections in the land” (Meine in: Van Horn et al., 2021, 133). This is an approach that compliments the earlier suggestion that we can only make kin from a community. Community and culture has to grow in relationship to the land. A bioregion as a place provides the context for making kin and in that regard we are facing an enormous challenge in our global world in which we have largely lost our connection to particular places, follow narrowminded herds, and neoliberal economies have turned most places into the same. Thus, it seems necessary to start with those acts that reconstitute our connections in the land. From these connections we can make kin, or to express it as a verb we have to kin. The recognition of others as kin, first of all of the members of our own species, including those one completely disagrees with is needed for a sense of unity (Nelson in: Van Horn et al., 2021, 140). As I mentioned, this is our challenge and we can only accept that challenge by letting go of our ego. Finding communality is a first part, and perhaps it is important to remember that, as Rosemont suggests, we all have similar values, yet we disagree on which values we should prioritize over others (Rosemont, 2015).

8.4 Make Kin With the provocative slogan “Make Kin not Babies” Donna Haraway addresses kin and the making of kin from a Western standpoint in the midst of “the trouble” (the Anthropocene, Chthulucene, Plantationocene, or Capitalocene). Weaving together stories from the natural sciences, science fiction, and art, her work Staying with the Trouble is a patchwork of relational moments that collectively urge us to reduce the population of humans on the planet and to make instead what she calls “odd-kin.” It is precisely an attempt to relate to those beings that are not human. These beings can be animate or inanimate. She aims for establishing kinships that for the indigenous cultures mentioned above are quite common. Haraway makes very similar gestures to those we find in indigenous cultures, yet starts from a different place, utilizing a very different language. We find that what is odd is natural in the other, and we find that what is inanimate in one discourse is animate in the other. Notions of persons and agency seem incompatible. We find a few significant differences between Haraway and indigenous approaches, which is first of all the language which considers what is odd in one culture as odd in another. Also rooted in language is animacy, personhood, and agency: the rock being a rock (for now) expresses something different than the

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object rock consisting of a list of minerals. The western canon is not entirely oblivious to these ideas. Aristotle’s plant and animal soul are active. The rock wants to go down and Spinoza’s (as well as Schopenhauer’s) rock is not unlike a human forced to move in a certain direction. While Aristotle finds a certain agency in the rock, Spinoza brings the agency and free will of humans into doubt. Yet, the language of modern science has radically eradicated any possibility of animacy or agency in non-living beings. Free will is reserved for human beings while other animals act out of instinct, a point that Spinoza exactly sought to question. Inanimate objects and even many living beings lack agency and are moved by external forces, and cannot be a person. This raises the question if this language of the natural sciences in which Haraway operates, even while new forms of agency and human animal relationships are expressed, leaves enough room for non-human and non-animate agency. Does her language leave the possibility to think outside of an anthropocentric perspective? The answer for Haraway is constantly to “stay with the trouble.” We should not re-envision ourselves, and/or our language without coming to terms with the trouble, including problematic language and grammar. Instead of suggesting that from a western standpoint, we might have to undo some of our stories, and re-animate our language, before we can start to kin, Haraway suggests to kin with other languages. In a way, Haraway attempts to rewrite the current scientific discourse, among others by using art, science fiction, and numerous references to indigenous concepts. One might argue that Haraway’s language might benefit from a different language, yet she chooses instead to use a multiplicity of discourses, and points out that these discourses are incompatible. Describing the Australian Wurundjeri people’s territory she writes “This colonized area along the Yarra became a wasteland, sewage dump, and site for cargo and rail transport, transporting the wetlands (Anglo scientific term) and destroying country (Anglo-Aboriginal term for multidimensional and storied place). Wetlands and country are as alike and as different as cat’s cradle, jeux de ficelle, na’atlo’o’, and matjka-wuma; for staying with the trouble, the names and patterns are necessary to each other, but they are not isomorphic. They inhabit linked, split, and tangled histories” (Haraway, 2016, 26). The words Haraway uses here are different expressions of “string figures,” each culturally determined and not translatable from one culture and language into another. They are not the same, and the untranslatable aspect does not imply that they are not related. In other words, we can start with a kinship between languages and then determine what the significance is of the particular stories and thoughts. As the title of her book suggests, we need to stay with the trouble, which means that we stay with the language and grammar of the Anthropocene. The suggestion then is to kin with other languages, so that we can taste different stories and thoughts, and string or thread with these. When Haraway speaks about kin, and making kin, she uses “sympoiesis” or symbiotic assemblages and cites the definition of “sympoiesis” provided by Dempster: “collectively-producing systems that do not have self-defined spatial or temporal boundaries. Information and control are distributed among components” (quoted in: Haraway, 2016, 61). Haraway’s notion of kin as tentacular regards sympoiesis in terms of collective making and collective organization, using a Western

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scientific discourse, along with science fiction, art, and indigenous wisdom. The notion of making kin, which we also find in aboriginal languages as “kinning” is a process, never complete and emphasizing the co-dependence of everything. Within the aboriginal notions discussed earlier we find that this is always already happening. While Haraway recognizes this, her making kin, is regarded as a turning point, starting from the present predicament of the Anthropocene (or Chthulucene). Such a turning point is recognizing the present and without romanticizing the past envisioning a future. Haraway describes kinship with the non-human world in terms of our relationship with non-human beings, including animals, organisms, technology, inanimate beings. Sympoiesis means that we become or make with: “Nothing makes itself; nothing is really autopoietic or self-organizing […] Sympoiesis is a word proper to complex, dynamic, responsive, situated, historical systems. It is a word for worlding-­ with, in company” (Haraway, 2016, 58). She starts from this language, partially to step beyond it, which is in particular clear when she speaks about spatial and temporal boundaries. Yet the language of Western industrialization, (organizing, company, assembling) remains prevalent.

8.5 Sitting with Rocks To now kin and thread the Western approach on inanimate agentless, “personless” objects with other indigenous approaches I turn here to the aboriginal thinker Tyson Yunkaporta, of the Apalech clan in Queensland, Australia. In his magnificent book Sand Talk he writes about stones that they “can tell us about how to deal with the complexities and frailties of human societies, and most important how to deal with idiots” (Yunkaporta, 2021, 24). He discusses creation stories, including the big bang theory, the common point of origin of all that is and in which “there is no difference between you, and the stone, a tree, or a traffic light. All contain knowledge, story, pattern”(Yunkaporta, 2021, 25). This is not knowledge or a story about the measurable qualities and quantities of a stone or rock, nor do we have to hug the rock: “you have to show patience and respect, come in from the side, sit awhile, and wait to be invited in” (Yunkaporta, 2021, 25). To a Western mind trained in Western science and speaking a language of the Anthropocene this will sound strange. In this last section I follow his thread in order to also kin with rocks. The aboriginal wisdom Yunkaporta draws upon uses the image of the emu (or simply Emu) as part of the creation story and cause of narcissism. In other cosmologies we find representation of greed and cunning in figures such as Raven and Coyote. Yunkaporta speaks about Emu as “a troublemaker who brings into being the most destructive idea in existence: I am greater than you; you are less than me” (Yunkaporta, 2021, 26). The behavior that is the result of this idea (colonialism, slavery, racism, sexism, speciesism, life-ism, to name a few) is destructive and human society “needs massive checks and balances to contain the damage it can do” (Yunkaporta, 2021, 27). I indicated earlier the issues around the ego in relationship

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to Nietzsche. Yunkaporta reflects on the current narcissistic tendencies of our socially fragmented world. He appeals to the gift economy, or what he calls “the basic social contract of reciprocity” (Yunkaporta, 2021, 28) which seems entirely lost in today’s world of narcissistic tweets, Instagram posts, tiktoks, and influencers on youtube channels. Parallels with Zen Buddhism can be made here: The confrontation with oneself, one’s ego, the worst of your self, and the recognition of impermanence and the interdependence of everything in the universe, from pebbles to traffic lights, are some of the most important lessons I have gained from practicing Zen Buddhism.5 Zen master Dōgen provides us with kōans on rocks, pebbles, and stones that, I believe, provide similar messages. When he cites master Dahzeng who is asked the following question: “what is the mind of the ancient buddhas? The master said, “Walls, tiles, pebbles” (Dōgen, 1985, 91). We are the confused students wondering about walls, tiles, and pebbles. Sit with that for a while, Yunkaporta and Dōgen would say. Yet, this is only half of the kōan presented by Dōgen: after citing master Dahzeng’s answer that the mind of the ancient buddhas is “Walls, tiles, and pebbles” he adds: “This being so, you should know that the mind of the ancient buddhas is not walls, tiles, and pebbles, and that walls, tiles, and pebbles are not called the mind of the ancient buddhas.” And then perhaps most importantly he adds “The mind of the ancient buddhas is studied in this way” (Dōgen, 1985, 91). For those who have studied him, this seems a typical Dōgen move: cite a classical saying, then state the opposite, or read it against the traditional interpretation, and leave his students with a contradiction with the command to study this, especially if you don’t understand it: Go sit with this for a while. Kōans might remind us of the aphorisms of Heracleitus, often stating seemingly contradictory ideas. They are not meant as answers, and perhaps cannot be answered, although the latter should not be used as an answer. They are certainly meant to study. The key question here might be: why walls, tiles, and pebbles? I would first of all suggest that everything has Buddha nature. This realization seems to be the key to enlightenment in Mahayana Buddhism. The Vimalakirti Sutra, a text especially important for East Asian Buddhism, recognizes that all you would ever want, is already here. The pebbles right in front of you are gems. The walls are made of gold, as are the tiled floors. Don’t conquer the world and consume yourself into happiness while you are already living in a palace. In Dōgen’s Mountains and Waters Sutra we find a sutra of the natural world, or as Snyder puts it, the processes of the earth (Snyder, 1998). The text shows us our relationship to the natural world and how we are a (small) part of it. Citing numerous sources from the Buddhist tradition, and then reading those sources in his own way, Dōgen brings up numerous animate images of mountains and stones, such as “male stones, female stones, and nonmale nonfemale stones […] heavenly stones  The Tao Te Ching might also be helpful to think about invulnerability. It discourages us from narcissism and praising ourselves. The text says “Do not shine like the precious gem, but be as dull as a common stone” (39). Thus, also in Daoism we find a comparison with stones and the problematic urge to be a gem, similar to the Emu urge discussed by Yunkaporta. 5

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and earthly stones” (Dōgen, 1985, 99). The notion of gendered stones brings perhaps a sense of personality. As we see in the image of the “stone woman who gives birth to a child at night” we note the fertility of what we typically consider as inanimate (Dōgen, 1985, 97). We find here some echoes of, or kinship with Kimmerer’s grammar of animacy. Throughout Dōgen’s sutra we are shown that the opposite of our expectations exists in mountains and waters. Mountains walk and move while waters are harder than rock, carving rivers into mountains. Regarding heavenly stones: Yunkaporta tells us that the knowledge that stones fall from the sky and have created craters with their impact, is very old indigenous knowledge. It seems that Dōgen and Yunkaporta both draw from this old knowledge. Meteors have been witnessed and the storied landscapes remind cultures of such events, preserving the testimony of ancestors. Likewise, both Dōgen and Yunkaporta suggest that stones or rocks are the basis of everything and that they are kin. The mountain, consisting mostly of rock, gives birth, is the fertile ground that makes life possible in the first place. Zen Buddhism presents us another form of kinship, or making kin, with the notion of lineage. This is not a kinship through blood ties, but through transmission of the dharma, of wisdom. We can, first of all, think about human kinship leading us back to the Buddha. Specifically for Zen Buddhism such kinship extends beyond the human world. Dōgen speaks of mountains and waters, as well as stones, walls, tiles and pebbles. All these entities have Buddha nature and can be teachers. For, in a world in which everything has Buddha Nature, wisdom and transmission extends beyond the human realm. Elders, as we saw in the quote from Richard Nelson, can be other than human. Dōgen seems to suggest this when he states that we should not think about superiority and inferiority of one teaching over the other: “Men have flowed into the Way drawn by grasses and flowers, mountains and running water. They have received the lasting impression of the Buddha-seal by holding soil, rocks, sand, and pebbles” (Dōgen, 2002, 17). Our teachers can be grasses, flowers, mountains, waters, or walls, tiles, and pebbles. The message of both Yunkaporta and Dōgen seems to be: sit with rocks and walls until they invite you in.

8.6 Conclusion Throughout this chapter I have discussed different forms of kinship that ultimately seek to step beyond the vulnerability-invulnerability dichotomy. Different indigenous accounts place kinship at the basis of their communities and extend both their kinship and communities to the natural world. We are a small part of a much larger world, and yet that small part should have a foundation from which we can kin. As we all know too well, relating to members of our own species is often challenging. We find different strategies, from Melissa Nelson’s idea to embrace wholeness and find the magic in kinship, to Yunkaporta’s idea that we can learn from stones how to

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deal with idiots. For the latter it is the overcoming of the Emu mentality, our narcissistic tendencies, that is at the heart of the matter. For indigenous communities it is indeed a community that collectively deals with our narcissistic tendencies which creates the condition for the possibility of kinship. From the Western perspective Nietzsche challenges the dichotomy of pain or suffering and joy. With that he helps us to challenge the idea that strength consists in invulnerability. Strength rather is found in the moment when we take risks. Haraway provides an interesting idea of worlding with different cultures and languages. Western scientific language is invited to kin with other discourses. Finally, the Zen-Buddhist approach shows us yet another way in which we can kin with the natural world. We find here an echo or kinship with the aboriginal idea that even inanimate objects (which might not be as inanimate as the Western tradition suggest) are our kin, and moreover that these entities can teach us. Kinship with the natural world, on the one hand, makes us more vulnerable because the destruction of our natural environment is felt deeply and gravely. Yet, the lack of an absolute self that we find in both Zen and the aboriginal perspectives provide a position in which kinship also makes us feel stronger because we are much more than the insignificant being that carries our name. Barrett suggests that “There is no self to preserve; there is only the we who belong to one another – and will thrive, or perish, together” (Barrett in: Van Horn et al., 2021, 52). This provides ways to move beyond vulnerability. I am more vulnerable than the mountain, yet my kinship with even a rock radically redetermines my vulnerability as invulnerability, or something that lies beyond such a distinction. The Emu deception makes us forget that we are nothing special. It makes us think that we are better than rocks. Our narcissism makes us want to be, or feel, invulnerable, crushing others, while failing to recognize that we are crushing ourselves. Yunkaporta reflects: “Anyone who thinks they’re better than a rock should be turned into one- then they would find out they are not that special, and they could finally be happy” (Yunkaporta, 2021, 35). Interestingly it is not the rock, the land, or the earth that makes us vulnerable. The most vulnerable is the human shell. All “life and creation […] society, companies, relationships, identities, knowledge” will “crumble without a solid base” and that basis is the “body of the earth” made out of rock (Yunkaporta, 2021, 34). We have to find such kinship in order to not crumble as individuals, communities, and as a species. Through the notion of kinship we find a different conception of the human being, one that challenges our western conception of mastery and anthropocentrism. This conception differs from ecocentric or biocentric approaches because there is no center and in the network of relationships everything, including the human being is decentralized. We find kinship everywhere and this newly discovered relationality ties us to everything and ties everything to us. Who we are is then redetermined through these relationships of kinship with the rest of the world.

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References Dōgen. (1985). Moon in a dewdrop. North Point Press. Dōgen. (2002). The heart of Dōgens Shōbogenzō. State University of New York Press. Haraway, D. (2016). Staying with the trouble: Making kin in the Chthulucene. Heidegger, M. (2010). Modern science, metaphysics, and mathematics. In Basic writings (D. F. Krell, Trans., pp. 267–306). Routledge. Kimmerer, R. W. (2020). Braiding sweetgrass: Indigenous wisdom, scientific knowledge and the teachings of plants. Latour, B. (2017). Facing Gaia. Polity. Nelson, R. K. (1986). Make prayers to the Raven: A Koyukon view of the northern forest. University of Chicago Press. Nelson, R. K. (1991). The island within. Vintage Books. Nietzsche, F. W. (2006). The gay science. Dover Publications. Rosemont, H. (2015). Against individualism: A Confucian rethinking of the foundations of morality, politics, family, and religion. Lexington Books. Snyder, G. (1998). Turtle island. Counter Point. Thornton, T. (2008). Being and place among the Tlingit. University of Washington Press. Van Horn, G., Kimmerer, R. W., & Hausdoerffer, J. (2021). Kinship: Belonging in a world of relations (Vol. 2). Vincenzo, J.  P. (2006). Nietzsche’s animal menagerie: Lessons in deep ecology. Mosaic: An Interdisciplinary Critical Journal, 39(4), 61–76. Yunkaporta, T. (2021). Sand Talk: How indigenous thinking can save the world.

Chapter 9

Vulnerability, Wellbeing and Health Roxana Baiasu

9.1 Introduction The concept of vulnerability appears in many national and international documents, such as, for example, the UNESCO Report of IBC on the Principles of Respect for Human Vulnerability and Personal Integrity (UNESCO, 2011) and the European Commission work on basic ethical principles in bioethics and biolaw (Kemp, 1999, pp. 4–5; Mackenzie et al., 2014, p. 2). In these contexts, vulnerability is understood as being under the threat of harm which can impair one’s integrity, dignity and autonomy. The growing literature concerning the normative significance of vulnerability includes a number of theories in the areas of ethics (including bioethics and medical ethics research), political philosophy, feminist philosophy, economics and legal theory. Some of these theories have been concerned with issues such as the connection between vulnerability and moral responsibility, obligations, justice, equality and human rights (Mackenzie et  al., 2014; MacIntyre, 1999; Nussbaum, 2006; Fineman, 2008, 2010; Turner, 2006; Butler, 2004). It can be argued that a well-grounded understanding of the normative significance of vulnerability and related ethical, political and legal issues requires a thorough investigation into what vulnerability is. This paper offers a contribution to this investigation. An in-depth understanding of the complexities of vulnerability can help address related issues of justice and equality, and can shape the development or I am very grateful to Élodie Boublil, Matthew Broome and Susi Ferarrello for their suggestions and comments on earlier drafts of this paper. R. Baiasu (*) Institute for Mental Health, University of Birmingham, Birmingham, UK e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 E. Boublil, S. Ferrarello (eds.), The Vulnerability of the Human World, Philosophy and Medicine 148, https://doi.org/10.1007/978-3-031-41824-2_9

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reconfiguration of legal thought and policy-making which can do justice to various groups affected by different forms of vulnerability. The inquiry into what vulnerability is, or perhaps, better put, the question concerning the meanings of vulnerability is pursued here by means of phenomenological and conceptual investigations and draws on intersectional analysis to tackle certain complex issues concerning specific vulnerabilities. Phenomenological and conceptual analyses play a significant role in the proposed investigation of neglected, core aspects of vulnerability and sheds more light on its basic structures, some of which are connected to ethical and political issues, such as, for example, the question as to who decides who is an extremely vulnerable subject, and in what ways they are considered to be so. I suggest that this question can be addressed in more depth by an investigation which starts with an analysis which is subject-centred. Martha Albertson Fineman argues that by placing ‘the vulnerable subject’ at the centre of legal and political approaches to inequality it becomes possible to identify more accurately who bears responsibility for disadvantages that arise from social exclusion, and to expose certain myths about the subject that sustain laws which fail to remedy inequalities (Fineman, 2008, 2010). In this paper, I am concerned with certain basic structures of vulnerability and their manifestations in illness and, in particular, mental illness and investigate how wellbeing and health are possible. I suggest that by placing the vulnerable subject at the centre of the philosophical, theoretical investigation concerning the issues I mentioned it is possible to contribute to important transformations of moral, political and legal thought about health and wellbeing, and the development of health policies which can rectify structural injustices and inequalities. The proposed person-­centred approach I endorse is compatible with, and complementary to, evidence-­ based approaches (cf. Messas & Fulford, 2021; Fulford & Stanghellini, 2019). It can be said that the concept of vulnerability is crucial for an account of wellbeing. In its turn, wellbeing has been taken to be at the core of the concept of health; this is precisely how the World Health Organisation (WHO) defines health: ‘Health is a state of complete physical, mental and social wellbeing and not merely the absence of disease or infirmity’ (The WHO Constitution). Although one can point out the very demanding character of the criteria of health expressed by this definition I take it that a general connection between health and wellbeing is not a controversial matter. The WHO defines health in terms of bodily, mental and social wellbeing. As it has often been pointed out, these concepts are quite vague and unclear; this unclarity negatively affects the practical guidance and impact this definition has in healthcare. This definition of health incorporates a prevalent understanding of wellbeing as a state of being happy or content and enjoying life (Carel, 2016, 130 ff.) – a state which is taken to be achievable by overcoming or significantly minimising vulnerability. Hence, in this context, wellbeing and vulnerability are taken to be opposite, contingent states of human condition. One more or less excludes the other: you cannot really be well if you are a vulnerable subject; to be well would require, for example, to completely recover from a certain illness. It has been pointed out that these dominant notions of ‘health’, ‘wellbeing’ and

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‘vulnerability’ are not only unclear but appear to enact certain negative limitations on human lives. For example, the ideals of wellbeing and health seem too demanding, unrealistic and even inaccessible whilst a negative notion of vulnerability understood as weakness, a matter of bad luck or a disaster, can have a marginalising, oppressing or stigmatising impact on particularly vulnerable people. For example, they are seen as different from ‘healthy people’ and unable to play the roles that healthy people play in the social world. This patronising stance demeans, marginalises and isolates the vulnerable, amplifies their fragility and suffering, and is constitutive of various forms of injustices against them. Some of these limitations of a dominant understanding of ‘health’, ‘wellbeing’ and ‘vulnerability’ are exposed by the approach I propose, which at the same time, offers a contribution to the clarification of these concepts and their meanings. Such a clarification involves a number of levels of inquiry; arguably, a fundamental or, at least, central level is a phenomenology of the phenomena corresponding to these concepts. By drawing on existential phenomenology and conceptual investigations, I propose a conception of vulnerability which points out that vulnerability is an essential aspect of our finite human condition. According to this conception, vulnerability is understood as an “openness” not only to being wounded but also to transformation and change, an openness to the possibility of wellbeing within a supportive social world. This account thus challenges the view that vulnerability and wellbeing are opposite states and suggests that they should be rather understood as interconnected aspects of human condition. I offer an account of being well which is more inclusive and accessible than an understanding of wellbeing in terms of an ideal of being-happy in ‘the absence of disease or infirmity’. According to the account I propose, to be well is to be able to find meaning in life – which, in the terms of this account, it means to be able to enact life-enhancing possibilities to be and to live well in health or illness. In the next Section I introduce two concepts of vulnerability discussed in the literature, and point out certain limitations of dominant approaches to them. In Sects. 3 and 4 I offer an alternative understanding of these two concepts of vulnerability and the relation between them. I apply this analysis to certain discussions concerning illness and mental health. In Sect. 5, I approach what I identify as life-­ enhancing possibilities of vulnerability, namely resilience and wellbeing, which are conducive to health. I point out the social, relational aspect of vulnerability, resilient wellbeing and health, and how the approach I propose can contribute to ethical and political debates about these issues.

9.2 What Is Vulnerability? As a preliminary remark, it can be noted that, as the etymology of ‘vulnerability’ indicates, to be vulnerable means to be able to be wounded (vulnus means wound), to be susceptible to harm and open to suffering. A basic distinction which is very useful for the investigation I pursue here is the distinction between an ontological,

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universalist conception and a situational or contextualist conception of vulnerability (Mackenzie et  al., 2014). In this section I introduce these notions, and consider some problems of certain dominant approaches to them. In Sects. 3 and 4 I propose an alternative approach. Mackenzie, Roger and Dodds note that, in the  relevant literature, ontological vulnerability has been conceived of as an inherent, universal feature of finite human condition; by contrast, contextual vulnerability has been understood as a specific, temporary, accidental feature of certain populations. Let us look more closely at certain dominant ontological and situational approaches (which I critically engage with in this paper). According to a prevalent ontological approach, we are all vulnerable in some way or another due to loss of health, dignity, material things, loved ones, home, country or other goods and capabilities. Being vulnerable could also mean being less able to resist or to tolerate potential harms. This is a universalist conception of vulnerability according to which vulnerability is an inherent aspect of human condition. (Mackenzie et  al., 2014; Baiasu, 2021a, b; Anderson, 2021). For example, Judith Butler argues that corporeal vulnerability and social precarity are constitutive of the condition of human being, a careful consideration of which can raise fundamental ethical and political issues (Butler, 2004). MacIntyre and Nussbaum endorse a universalist view according to which vulnerability, which is connected to our animality and sociality, is an inherent feature of what it means to be human, and is central to moral and political thinking (MacIntyre, 1999; Nussbaum, 2006). The legal theorist Fineman (2008) argues that vulnerability is a ‘universal, inevitable enduring aspect of human condition’ that should be at the centre of legal and political discussions of inequality and of social policy making and implementation (Mackenzie et al., 2014). By contrast, according to a dominant situational view, vulnerability is a contingent, temporary feature of individuals, groups or populations, which is context specific. This situational conception is endorsed, for example, by certain approaches in bioethics and research ethics which focus on a notion of vulnerable populations which includes, for instance, the categories of the pathological, mentally ill (e.g. patients with dementia, psychosis, etc.), the elderly, the abused (e.g. victims of rape or domestic abuse), and so on. Vulnerability then functions as a marker or label that enables the categorisation of these groups in some specific ways; this approach makes possible the recognition of specific groups or populations as extremely or especially vulnerable to various harms. It could be said that this approach can have some practical benefits: it can help identify specific forms of vulnerability and resources, services and goods (such as care, financial support or compassion) which are needed by specific vulnerable groups. As Mackenzie, Roger and Dodds note, the dominant ontological, universalist view and the situational view offer two different approaches to vulnerability which appear to conflict with one another; if so, how can they be integrated within one general concept of vulnerability in general? Moreover, there appears to be significant problems with both of these two types of approaches. I briefly touch below on

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certain challenges to the ontological approach, but discuss in some more detail certain problems of a dominant situational approach. Critics of the dominant ontological, universalist approach point out that this approach appears to be too vague and general  – therefore it cannot have much impact on practical issues, decision-making processes and actions needed in order to deal with vulnerabilities that affect individuals, groups and populations (Mackenzie et al., 2014). Furthermore, we are all vulnerable but some may have additional vulnerabilities. A challenge for the universalist view is whether, or to what extent, it can account for specific variations and complexities of vulnerability. Dominant situational attempt to account for various forms of vulnerability. They are concerned with the categorisation of populations and groups as especially vulnerable or extremely vulnerable. However, this approach is faced with important ethical and ontological challenges and questions. For example, what exactly are these individuals, groups or populations vulnerable to, and on what grounds are their vulnerability identified as such and such a type of vulnerability? Furthermore, vulnerability may be variegated; not even within the same group all parties are vulnerable to the same things to the same extent and in the same way. Some critics also point out that the dominant situational approach can lead to the isolation, marginalisation, stigmatisation and abuse of individuals and groups considered to be especially vulnerable (Mackenzie et al., 2014; Fineman, 2008). It can be argued that the dominant situational view can give rise to what Pamela Sue Anderson calls the Dark Myth of vulnerability (Anderson, 2021). In my work on vulnerability, I draw on Anderson’s critical analysis and develop it in some new directions through a phenomenological approach to vulnerability (Baiasu, 2021a). An important, critical point of Anderson’s discussion of the Dark Myth of vulnerability is that it more or less explicitly promotes an inadequate ideal of invulnerability. Being vulnerable and being labelled as such isolate and marginalise individuals and groups, and give rise to negative feelings such as shame, frustration, fear or anxiety. The dark dogma of vulnerability endorses what I take to be a problematic opposition between vulnerability and wellbeing; it enhances a gap between vulnerability and fragility, on the one hand, and wellbeing and health, on the other (Baiasu, 2021b). From this perspective, vulnerability appears to be something that is undesirable and must be eliminated  – ideally, the goal is to regain health and sanity by overcoming vulnerability. This approach entails a kind of disavowal of vulnerability. It can lead to an asymmetry of power relations between the apparently or allegedly invulnerable (or less vulnerable) and the especially vulnerable; this power imbalance has a negative, harmful impact on especially or extremely vulnerable individuals, groups or populations. For example, certain power imbalances produced by the Dark Myth of vulnerability can shape in some cases the relations between mental health professionals and persons with ill mental health, and can wrong or harm the latter and even both groups. The Myth does not reflect reality. These two groups are not as discrete and monolithic or homogenous as the Dark Myth seems to assume. For example, health

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professionals might often be themselves especially vulnerable; for instance, a number of recent studies have noted that the National Health Service in the U.K. has very high rates of mental illness in staff (de Castella, 2021; Edwards & Cowper, 2022). The asymmetry of power relations and misuse of power can take the form of paternalism which generates wrongs, harms or injustices. In some cases these can be inflicted by the very institutions, policies and service providers that are supposed to remedy or rectify the vulnerabilities of the individuals, groups or populations at issue. Mackenzie, Roger and Dodds call this paradoxical form of vulnerability produced by certain power misuses ‘pathogenic vulnerability’. This form of vulnerability can be also a result of other types of inadequate positioning or attitude; for example, an attitude which involves a harmful objectification of individuals, groups or populations is conducive to their marginalisation and subordination linked, for instance, to stereotyping and stigmatisation. Turner addresses similar issues in terms of what she calls “institutional precariousness” (Turner, 2006). Furthermore, Mackenzie et  al. (2014) point out that not just institutions but also interpersonal relations can give rise to pathogenic vulnerability. In this section, I have introduced two basic ways of understanding vulnerability in terms of its ontological status, and situational mode, respectively. I pointed out certain problems that dominant conceptions of these notions are faced with. In Sects. 3 and 4, I propose a way of addressing these problems. The proposed approach involves a reconception of ontological vulnerability, of situational vulnerability and of the relation between these two meanings of vulnerability.

9.3 Vulnerability: An Essential Aspect of Being Human In this section, I am concerned with a phenomenological account of ontological vulnerability. From this perspective, vulnerability is understood as an existential openness to the world, an openness to be and live, which is marked by the possibility of being wounded and harmed in many different ways (Baiasu, 2021a, b).1 According to this approach, vulnerability is a distinctive existential mode of our openness to what we live amidst, to others and ourselves. An important aspect of vulnerability is its social, relational character. I am not only vulnerable to the natural environment and the world I live in, but also to the actions, attitudes, affects and words of other people. I am vulnerable in relation to various kinds of cultural norms, customs, social and political institutions which are part of my world and which can affect me in ways which can wound, harm or wrong me. Vulnerability is a social, or relational aspect of human existence which is revealed, for example, by our dependency on other people, on social, educational,  This account draws on Heidegger’s notion of openness (Heidegger, 1962) and Pamela Sue Andersons’s account of vulnerability according to which to be vulnerable is to be open to being wounded (Anderson, 2021). 1

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economic or political institutions. Concerning mental health, social or relational vulnerability is manifest, for example, in the dependency of individuals or groups with mental ill health on mental health institutions and policies. Social, legal and political institutions can offer support, care or protection or can fail to do so due to various wrongs such as, for example, neglect, paternalism, abuse or violence that they could harbour or generate. As we have seen, these wrongs can lead to pathogenic vulnerability. An aspect of this  is related to the precarity of vulnerability-­ related benefits (such as, care, financial support or compassion): these benefits are more contingent than it is usually assumed. In some cases it can prove to be very difficult to avoid or rectify certain harms and wrongs. Turner points out ‘institutional precariousness’ can require human rights legislation to protect certain vulnerable groups and individuals (Turner, 2006). We are vulnerable in relation to the social world and to what is going on in our immediate or wider environment. Furthermore, vulnerability is also an essential aspect of one’s own inherent being: I am vulnerable in virtue of my own embodiment and gender. Bodily vulnerability is visible, for example, in illness or the process of ageing. One is also vulnerable to ways in which one makes sense of oneself, of one’s own body and capabilities, and even more vulnerable perhaps in this respect in situations of chronic illness or mental ill health. A detailed analysis of the multidimensional, complex structure of our vulnerable openness to others, the world and ourselves would require an extensive discussion. For the purposes of this paper, I only touch on some of its core aspects but for the most part focus on a certain phenomenological-­epistemic aspect of our vulnerable existence in, and openness to, the world, namely our capability to make sense of things. As I shall point out later, this involves an enactment of our freedom, self-constitution and capability to make key choices despite contingency and various constraints limiting agency. Understanding or sense-making is a feature of our openness to the world. We are open to the world by making sense of it in some way or another. Our openness to the world is constituted by other essential aspects of our relation to the world which include affectivity, discursiveness, embodiment, the sense of being a Self and the relation to others, which, as phenomenologists like Heidegger, Sartre, Merleau-­ Ponty and some of their followers have argued, are interconnected. Although these ontological structures are interwoven in our experience of the world, they can be laid out and analysed separately, at least up to a certain point. It is possible to identify a number of different approaches to vulnerability which focus on specific ontological structures (which some philosophers or theorists claim that they have a certain priority in shaping our experience of the world). These approaches to vulnerability include: first, body-centred approaches concerned, for example, with corporeal vulnerability or precarity (Murphy, 2011; Butler, 2004), somatic illness (Toombs, 1988,  Carel, 2016), mental illness (Fuchs, 2020; Svenaeus, 2001); second, mood-centred approaches pursued, for instance, from an ethical perspective (Anderson, 2021; Boublil, 2018, 2021; Ferrarello, 2021) or in relation to mental health issues (Ratcliffe, 2008; Ferrarello, 2023); and third, social approaches related

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to a variety of topics such as, for example, dependency and care (Butler, 2004, 2009; Goodin 1985; MacIntyre, 1999; Nussbaum, 2006; Dodds, 2007; Kittay, 1999). The approach I pursue is meaning-centred; it focuses on understanding and sense-making.2 A basic, existential form of sense-making is an understanding of things in terms of their possibilities in connection to one’s agency, tasks and goals in everyday contexts of life. This way of making sense of things in terms of their relation to other things and to oneself is possible in virtue of a basic capability integrating all this network of relations and directing oneself towards relevant possibilities of engaging in the world. For example, I have an understanding of my room and the arrangement of things within my room which corresponds to my activities, needs and purposes: I understand this environment and my place within it in terms of my possibilities of using various things within it. I am able to organise and integrate all of these possibilities in such a way that if I want to undertake a certain task I am able to find my way about my room. If I am affected by a serious illness which severely impairs my mobility, my space of possible agency shrinks. For example, I might not be able to get out of bed easily and reach my desk to work. Or if I am seriously affected by depression, I can find myself unable to get out of bed and do anything (cf. Aho, 2013). There is a loss of possibilities in ill health which can be understood as a loss of existential meaning. (cf. Broome & Ratcliffe, 2012). Concerning our sense-making capability, it could be said that we are all vulnerable insofar as in each case when we pursue a task we choose certain ways of carrying it out whilst a number of other possibilities are left out; this choice involves a risk of failure and of being wounded by the potential outcomes of this failure. But in chronic or serious illness the space of sense appears to be curtailed and, in many cases, radically so. It could be argued that new spaces of meaning can open up which are, however, less shared, and that there are various degrees and forms of vulnerability corresponding to the diversity of sense-making capabilities and their various manifestations. This brings us back to the notion of contextually specific or situational vulnerability.

9.4 Situational Vulnerability: An Intersectional Approach In this section, I sketch main lines of a reconception of situational vulnerability I offer as an alternative to the dominant view mentioned earlier which, as we have seen, can lead to the morally wrong and epistemically flawed Dark Myth of situational vulnerability.

 For this analysis I draw on Heidegger’s account of understanding and being-in-the-world (Heidegger, 1962). My approach is also influenced by Adrian W. Moore’s understanding of metaphysics or ontology as ‘the most general attempt to make sense of things’ (Moore, 2012) and his methodology of ‘conceptual philosophy’ (Moore, 2001); I also endorse his view of phenomenology as being concerned with ‘the making sense of making sense’ (Moore, 2012). 2

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In each case, ontological structures of the openness of vulnerability (which include the existential structures mentioned above, namely, sense-making, affectivity, embodiment and discursiveness) are enacted in concrete contexts of specific situations of vulnerability of individuals, groups or populations. These ontological structures can be understood as basic schemes that inform specific situational vulnerabilities; the former are, in this sense, conditions of possibility of the latter. I would like to suggest that the diversity of vulnerabilities and their manifestations can be understood in terms of the contextual feature of situational vulnerability. Situational vulnerability can be, in some cases, a distinctive essential aspect of one’s concrete existence and, in this sense, it could be individualising: it involves some very specific characteristics that differentiate an individual from the others. In other cases, situational vulnerability could be understood as a distinctive feature of a group or population. The identification of specific kinds of situational vulnerabilities depends on what needs and goals this identification may serve. I might have an ontological and epistemic goal of identifying and making sense of my own distinctive situational vulnerability: it is part of who I am and therefore it is very significant for me. Making explicit my own vulnerability related, say, to a certain mental illness could also serve some practical purposes such as getting support or treatment, or could enable me to address certain ethical concerns about my being marginalised, neglected or even abused in certain contexts. In order to be able to do so, I assert or acknowledge my membership to a certain vulnerable group. Situational vulnerability can thus be understood as a distinctive mark of an individual or group. In this section, I propose an understanding of situational vulnerability in terms of intersectionality. Concrete forms of vulnerability are shaped by a variety of interconnected factors which can include: race, gender, age, ethnicity, culture, social and economic status, one’s place in intersecting webs of customs, institutions or organisations. An intersectional analysis can, in each case, reveal such intersecting factors that shape the situations of an individual, a group or a population. Furthermore, intersectional analysis can reveal corresponding power relations at work in those situations which might produce harms, injustices and inequalities. For example, an intersectional analysis can reveal how my ethnic background, race, gender, age and so on are constitutive of my own vulnerability or the vulnerability of a group I am part of; moreover, it can reveal potential or actual harming imbalances of power that are related to the intersectional factors I mentioned above (that is, my ethnicity, race, gender, etc.). Let us consider a more concrete illustration, namely the case of a woman, L., who has dementia and is an immigrant who moved to the U.K. relatively recently. Her experience of her illness is marked by a certain language barrier which is not just due to dementia but also to her lack of full mastery of English. Her inability to express herself well in English can be misrepresented and can be considered a deficiency which would allegedly be due primarily to dementia. As a result, she is considered by medical staff and healthcare workers to be less capable than she is. Furthermore she is subjected to some forms of paternalism that can potentially give rise to another form of vulnerability affecting her, namely pathogenic vulnerability. These considerations illustrate how her vulnerability is intersectional: her illness

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intersects with her socio-political status. To this intersectionality there correspond intersecting axes of injustice. Suppose the care home manager and staff point out that no issues occurred in relation to other dementia patients and in relation to other immigrant patients suffering from other conditions. However, their response and action fail to address the wrongs and injustices experienced by L. who is both an immigrant and a dementia patient – her situational vulnerability is shaped by the interweaving of these two features. To conclude this analysis, I would like to point out that the alternative, ameliorative approach I offer can address the three problems or challenges raised in connection to dominant conceptions of vulnerability. As we have seen, the three problems or challenges are as follows: first, a dominant ontological approach might seem too general, broad and vague, and hence cannot have a practical use or impact on specific situations of concrete vulnerabilities (Mackenzie et  al., 2014); second, the alternative dominant approach to situational vulnerability might endorse a Dark Myth of vulnerability (as a potential result of labelling individuals or groups as ‘especially’ or ‘extremely’ vulnerable), and can be conducive to additional forms of pathogenic vulnerability (such as, for example, paternalism); thirdly, the universalist, ontological approach and the situational approach seem to conflict, and therefore it is difficult to see how they can be integrated within an account of vulnerability in general. I have argued that a rethinking of the ontological and situational concepts of vulnerability which is shaped by conceptual, phenomenological and intersectional analysis and methodological principles of inquiry offers a promising way of solving the problems mentioned above. First, I have indicated that the proposed reconceptualization of ontological vulnerability by means of a phenomenological-existential analysis and conceptual inquiry can show how ontological vulnerability is not an abstract category but a lived phenomenon which is connected to concrete experience. This approach identifies ontological, basic structures of vulnerability which are, however, always enacted in experience by specific modes of vulnerability in particular concrete contexts. For instance, embodiment can be considered to be an ontological feature of vulnerable human condition which is differently enacted in different situations  – for example, in various experiences of ill health, including mental ill health (as it has been pointed out by some phenomenologists such as, for example, Carel in her account of somatic illness, or Fuchs, in his approach to mental disorders). Secondly, I have proposed a rethinking of situational vulnerability in terms of intersectionality and have suggested that this approach can overcome the Dark Myth of vulnerability and resists the generation of ethical vulnerabilities such as pathogenic vulnerabilities. An intersectional analysis can identify more accurately different specific forms of vulnerabilities and in this way facilitates the pursuit of justice for vulnerable subjects. Thirdly, I have proposed a rethinking of the relation between ontological and situational vulnerability. Ontological vulnerability can be understood as a general schema or general sense of different, specific modes of being wounded or harmed. Situational vulnerabilities constitute enactments of the ontological vulnerability

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schemas which intersect in various ways in specific situations. The ontological concept and the situational notion of vulnerability are thus interconnected and can be integrated within an account of vulnerability in general.

9.5 Ontological Resilience and Wellbeing As we have seen, an implication of the analysis offered above is that the ontological and situational notions of vulnerability are not opposed to, and not severed from, one another. In particular, it can be noted, for example, that the former reflects some relevant context and the latter depends on resilience (Cf. Mackenzie et al., 2014). It can be argued that resilience is, in a very significant sense, connected to vulnerability. More specifically, it can be argued that resilience is a life-enhancing possibility of vulnerability, which makes wellbeing possible and thus can contribute to a healthy life (Baiasu, 2021b). Before I move on to talk about this in some more detail, I would like to note two aspects of my approach. The phenomenological approach to vulnerability that I propose focuses on sense-­ making, and notes that vulnerability includes both life-enhancing and life-stifling ways of making sense of the world and one’s place in it, which are often interconnected or interwoven in experience. An approach which distinguishes between them by means of phenomenological and conceptual analyses is not inconsistent with an acknowledgement of the interconnectedness of these sides of vulnerability in experience. Furthermore, the laying out of different sides of vulnerability not only contributes to a better understanding of this essential aspect of human existence but can also play an important practical role in connection to the identification and recognition of ethical and political issues corresponding to different forms of vulnerability that are made explicit by phenomenological and conceptual analyses. The concept of resilience has a wide variety of uses in various contexts such as psychology, health psychology, neuroscience, economics, politics and so on. Empirical research in these areas investigates various types of resilience. As a psychological concept, resilience has been employed in various approaches to, and numerous debates about, wellbeing and mental health, and there seems to be a general agreement concerning some basic aspects of resilience. Resilience is generally understood as the capacity to bounce back in the face of adverse situations, to adapt, to cope and even to achieve significant results, or to be able to pursue important goals by developing personal strength. As such, resilience is taken to play an important role in the development and sustainment of wellbeing. Resilience is conducive to wellbeing. In its turn, wellbeing has been taken to be a component of health. An existential, ontological approach to resilience can lay out basic, structural aspects of how resilience plays out in concrete contexts of life (I have started to pursue such an approach in Baiasu, 2021a, b). I have proposed an ontological account according to which existential resilience is an essential possibility of human condition which involves the formation of new ways of making sense of things in adverse, difficult situations. The resilient capability of reconstructing meaning

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primarily consists in being involved in the world through one’s actions and projects. However, this approach acknowledges that the reconstruction of sense-making in resilience is not unidimensional but is complex, multifaceted and many-layered; it reaches the self, its relations to other people and various ways of relating to the world. The meaning-centred approach that I propose also acknowledges that other essential features of our openness to what there is – such as, for instance, embodiment or affectivity (including feelings of direction, belonging, reassurance, or comfort) – are connected to resilient sense-making. However, my approach focuses on meaning reconstruction in resilience. To illustrate this approach let us consider a specific type of somatic illness, namely respiratory illness which requires the use of a certain equipment enabling the individual to breath well and to carry on with many of their everyday activities. Their use of the medical equipment (provided by certain relevant healthcare services) integrates this equipment as part of their environment and agency. The individual develops new ways of thinking about certain aspects of the environment including, for example, considerations as to whether the equipment can be used in specific contexts such as, for instance, while they travel away from home (see Carel, 2016, 71f.). Let us consider another illustration of the proposed approach. In early stages of dementia when memory starts to be affected the use of some equipment can help compensate for memory faults and facilitates resilient sense-making which produces new ways of finding one’s way about in the world – for example, by making notes, taking photos on one’s phone or recording messages which are used as reminders. The help of other people, such as close family members or friends, or relevant services are also conducive to the formation of resilient ways of making sense of the world by continuing, to some extent at least and in some new ways, to be engaged in various activities. Dependency on others, and various relations with other people (such as family, friends or healthcare staff) play an important role in the formation of resilience. Hence, resilience formation is a social or relational phenomenon. It can be argued that certain experiences or  manifestations of mental illness involve resilient mechanisms. I would like to briefly consider here delusions. A number of authors have argued that delusions are not merely false beliefs or cognitive dysfunctions, as some influential approaches have claimed (cf. DSM-5), but often they play a significant role in ‘attributing meaning to experience’ which can bring about a sense of order, coherence and safety (Roberts, 1992; see also 1991). According to a meaning-centred approach, delusions involve a reconstruction of meaning in the face of threatening situations (Ritunnano et al., 2022, Ritunnano & Bortolotti, 2021); this appears to be possible by virtue of a coping mechanism that resists the disintegration of meaning due to mental illness, and does so by producing new meaning. If existential resilience is taken to consist in a reconstruction of meaning in situations marked by a crisis of meaning, it can be argued that delusions involve a distinctive form of resilience. In delusional experience ‘everything gets a new meaning’ (Jaspers, 1963, 98); this can be an uncanny sense of the environment and one’s place

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within it, an ‘uncanny tension’; but new delusional meaning can also have a transformative, life-enhancing impact and, if so, it ‘brings strength and comfort’ (Jaspers, 1963, 98), coherence and order (Ritunnano et al., 2021). Delusional sense-making can be compensatory, protective and empowering insofar as it enables the individual to escape a threatening, unbearable reality (Gunn & Bortolotti, 2018;  Sass & Pienkos, 2013) and to become able to engage in some way or another in the world. According to this approach, delusional meaning supports agency (McKay et  al., 2005, 2007). In many cases, delusions involve sense-making and meaning reconstructions which consist in various ways of being engaged in the world (as I pointed out earlier, from an existential-phenomenological perspective, to make sense of the world primarily means to be able to be involved in the world). As a result and perhaps only temporarily, some delusional experiences can give meaning to one’s life (Ritunnano & Bortolotti, 2021) – that is, can enact in some way an existential state of wellbeing in illness despite the suffering due to the illness. It is important, however, to draw attention to some qualifications in connection to this account. First, this account is primarily concerned with the possibility of sense-making and sense-reconstruction. Second, this possibility can include the formation of uncanny meanings and tensions (however, it could be argued that having a sense of meaning, purpose and worth of one’s existence can compensate to some extent for the suffering caused by the illness). Thirdly, there are degrees as to how coherent and systematised delusions can be for different individuals experiencing them. It can be argued that in many cases, delusional experience has meaning for the individual who experiences it, but does it have any meaning for others? How is this even be possible? Consider the dissociality that is characteristic of delusions (Stanghellini & Ballerini, 2011), and the lack of a socially shared framework of intelligibility and thus the corresponding difficulty of communication (Fuchs, 2020). Such considerations can be used to challenge a meaning-centred approach. In response to this challenge, it can be argued that delusional experience can have meaning for an interpreter who is willing to pay careful attention to delusional reports and to find a deeper existential meaning behind the delusional experience (Ritunnano & Bortolotti, 2021). Furthermore, one can also refer to phenomena such as folie à deux or non-clinical delusions such as, conspiracy delusions, which involve shared delusional meanings. However, I do not intend to engage here in this complex debate but would like to point out a certain conclusion that can be drawn in this context regardless of what the answer is to the question as to whether delusional experiences have a deep existential meaning or some sort of Ersatz meaning: the brief discussion above brings to the fore the possibility of existential resilience, that is, of meaning reconstruction, in situations in which frameworks of taken-forgranted meanings tend to disintegrate. A meaning-centred approach can show that delusional experiences can involve a distinctive form of resilient meaning-­ reconstruction that is oriented toward an existential state of being well. The existential state of being well can be understood in this context in terms of this fundamental drive to find some meaning in life despite suffering and illness.

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The examples mentioned above illustrate how existential resilience is an enabling capability that is life-enhancing: it enables the individual to face an adverse or unsafe reality and intolerable suffering by reconstructing or rebuilding meaning frameworks that make possible some form of engagement in the world. Existential resilience is a transformative capability which in many cases makes wellbeing possible. In its turn, wellbeing is a prerequisite of health. In the context of the proposed existential, meaning-centred approach, to be well means to be able to find meaning in life. I propose an existential understanding of wellbeing in terms of meaningfulness, rather than happiness. One can be well even in illness, and even when one does not feel happy or does not experience a state of pleasure or content. But if one finds meaning in life, if one’s being in the world with other people is meaningful, one can face adversities, difficulties, pain and suffering (Baiasu, 2021b).

9.6 Situational Resilience and Wellbeing An important aspect of resilience and wellbeing that I would like to point out in this paper is their social or relational character. The proposed approach resists an individualistic understanding of resilience and wellbeing: they are not simply some subjective states that an individual can achieve independently from other people. The proposed approach moves away from an atomistic view: resilience is not something that an individual or even a group or population can achieve in isolation from the social world. Furthermore, the proposed approach resists a mentalist conception: resilience and wellbeing do not occur just in the mind but are possibilities of our embodied being in the world. Resilience and wellbeing development depends not only on the individual’s character, brain activity or mental reactions and responses but also on a social context. Resilience is not simply an inherent power of the individual or of a group or population. Without the support of the wider socio-political institutions and community, resilience and wellbeing might not even be possible in some cases. The possibilities for the formation and development of resilience and wellbeing (and also the ways they are shaped and how they impact the life of an individual or a vulnerable group) depend on social relationships, customs, norms, patterns of understanding and how society can help in this respect. In many cases, other factors such as economic, legal and political frameworks play an important role in shaping the possibilities for the formation of resilience and wellbeing. These considerations apply to forms of resilience and wellbeing that are conducive to health. Not only close social relationships but also social norms and patterns of understanding and preconceptions (some of which shape clinical encounters) as well as the support and protection offered by healthcare institutions and policies can play a vital role in the formation of the scope and nature of possibilities of renewal of sense making and engaging with the world that constitute resilience and wellbeing. Healthcare institutions or policies that are seriously affected by structural injustices or harmful prejudices can severely hinder vulnerable individuals’ or groups’

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reconstructions of sense and world engagement which can give rise to resilience, and can impact on these individuals’ or groups’ possibility of finding meaning in life, that is, on their existential possibility of wellbeing. By contrast, for example, rigorous evidence-based medical approaches complemented by person-centred clinical encounters and health-care services, by fair health policies and a supportive community have a significant, positive impact on the development of the possibilities of resilience and wellbeing. As I pointed out earlier, in the context of the analysis of situational vulnerability, an individual’s or a group’s experience of a specific form of vulnerability can be affected or shaped by institutional, legal and political factors; furthermore, other factors such as gender, race, ethnicity and economical status can play an important role in shaping vulnerabilities. These factors can also have an impact on the development of resilience and wellbeing. In many cases, this impact can only be properly understood through a careful consideration of the ways in which these factors or axes intersect with one another in specific situations of vulnerable individuals, groups or populations. In concrete contexts, the scope and nature of possibilities of wellbeing which are achievable through resilience – that is, the possibilities of finding meaning in life through reconstructions of meaning in situations of meaning crisis or disintegration  – depend on how these different axes of human life and vulnerability interact and intersect. For example, features such as age, gender or race are socially shaped by dominant patterns of understanding them, by social, political and legal frameworks and institutions. In many cases, a proper understanding of specific, situational forms of vulnerability requires an understanding of the ways in which different axes of vulnerability intersect. This intersectional understanding of situational vulnerability is a necessary condition for a proper approach to, and realisation of, possibilities of resilience and wellbeing that can be facilitated by relevant institutions, policies and legal frameworks. As I noted earlier, specific mental health vulnerabilities, such as for example, vulnerabilities related to dementia  or psychosis, cannot be properly approached only in relation to one factor or axis of vulnerability, such as age or the patient’s  neurological condition. A number of intersecting factors including age, embodiment, gender, economic status, cultural understandings of mental illness, medical knowledge and relevant mental health policies need to be considered when approaching the situational vulnerability at issue here. I have pointed out earlier that a helpful way of making sense of the context-­ dependent feature of situational vulnerability is to understand it in terms of intersectionality. I have noted that resilience can be conceived of as a life-enhancing possibility of the openness of vulnerability that is conducive to wellbeing. I have now sought to bring to the fore how resilience and wellbeing are situational, and to account for this in terms of intersectionality. An intersectional analysis of these phenomena is needed to understand more accurately and in more depth the scope, nature and possibilities of resilience and wellbeing in specific situations. This understanding can prove to be crucial for the identification of clear courses of action promoting resilience and wellbeing which can be established, for example, by healthcare policies or institutions and by relevant legal and political frameworks.

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9.7 Conclusion In this paper, I have offered support for the view that an inquiry into the basic question as to what vulnerability is can illuminate certain issues which are crucial for the ethics and politics of vulnerability. I have considered two ways of addressing the basic question as to what vulnerability is: the ontological and the situational approaches (Mackenzie et al., 2014). I have proposed an account which appears to offer a promising alternative to dominant ontological and situational accounts; I have argued that the proposed account can address three main types of problems that these dominant approaches face. The three set of problems are as follows: first, the dominant ontological approach appears to be vague and abstract and thus not very useful from a practical perspective and in relation to concrete concerns about specific forms of vulnerability; secondly, the dominant situational approach can support a Dark Myth of vulnerability which is conducive to the marginalisation and stigmatisation of vulnerable individuals, groups, or populations and to other forms of wrongs or harms inflicted on them – hence it can enhance vulnerability; thirdly, the two approaches seem to conflict and it is, therefore, difficult to see how can they be integrated within a general notion of vulnerability. To address these issues, I have sketched the main lines of a reconceptualization of ontological vulnerability, situational vulnerability and the relation between them. I have argued that this reconceptualization appears to offer a promising way of solving the three sets of problems mentioned above. According to the ontological view, vulnerability is a feature of the human condition. I have offered a meaning-centred approach to ontological vulnerability which has been pursued through a phenomenological-existential analysis interwoven with conceptual investigations. The conceptual analysis has contributed to the clarification of the concepts of vulnerability, resilience, wellbeing, illness and health, the relations and differences between them. The phenomenological analysis has made explicit certain general structures of lived experiences of vulnerability, resilience and wellbeing which include experiences of being wounded, harmed, or wronged. In many cases these experiences involve imbalances of power, injustices and inequities. I have pointed out that an intersectional analysis can shed light on such cases. According to the ontological analysis I have offered, vulnerability involves a disintegration or crisis of meaning; I have considered ill health and, in particular, mental ill health to instantiate this view. However, the proposed approach moves away from a Dark Myth of vulnerability by pointing out that there is a life-­enhancing existential possibility of human vulnerability, namely resilience – which resists the disintegration of meaning in very difficult situations such as somatic  illness  and mental ill health. The phenomenological analysis I have offered brings to the fore an existential conception of resilience understood as a reconstruction or reconstitution of meaning. It can be argued that existential resilience is possible even in very serious cases of somatic illness (such as, for example, serious cases of respiratory illness) and ill mental health (involving, for example, delusional experiences).

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Since we are all vulnerable in some ways or others, it can be said perhaps that resilience is a prerequisite of wellbeing. According to the phenomenological analysis pursued in this paper, wellbeing involves an existential capability to find meaning in life. An implication of this approach is that vulnerability and resilient wellbeing are not opposite states of being, but there is an existential connection between them (which I have described in terms of sense-making and meaning formation). If so, and if ill health is a mode of vulnerability and wellbeing is a constitutive component of health then the relation between ill health and health needs to be rethought. What the proposed account indicates in connection to this issue is that the notion of health needs to be rethought in a way that acknowledges our vulnerability and potential ill health, and the impossibility of ‘complete wellbeing’ that WHO mentions as part of the definition of health. This account thus supports a conception of health which is less demanding and more inclusive. I have pointed out that vulnerability, resilient wellbeing and health are social, relational aspects of human life. Hence, the proposed approach moves away from individualistic and atomistic approaches to these notions. I proposed a rethinking of situational vulnerability, resilient wellbeing and health in terms of intersectionality. In each situation, vulnerability is specific and dependent on the context that surrounds it. A similar point can be made about resilience and wellbeing, and about illness and health. Intersectional analysis can make explicit distinctive features of vulnerable people’s situations, and can provide a more accurate understanding of specific vulnerabilities, vulnerable subjects and groups and potential and/or actual inequities and injustices inflicted upon them. In its turn, such an understanding makes possible a rigorous thinking of related complex ethical, political and legal issues, and more effective decision-making processes concerning courses of action and policies that can support forms of resilience which are conducive to, or perhaps even required for, wellbeing and a healthy life in a healthy social world. ***

References Aho, K. A. (2013). Depression and embodiment: phenomenological reflections on motility, affectivity, and transcendence. Medicine, Health Care and Philosophy, 16(4), 751–759. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Association. Anderson, P. S. (2021). Towards a new philosophical imaginary. In P. Goulimari (Ed.), Love and vulnerability: Thinking with Pamela Sue Anderson. Routledge. Baiasu, R. (2021a). The openness of vulnerability and resilience. In P. Goulimari (Ed.), Love and vulnerability. Routledge. Baiasu, R. (2021b). Phenomenology of illness, resilience and wellbeing. In S.  Ferrarello (Ed.), Phenomenology of bioethics. Springer. Boublil, E. (2018). The ethics of vulnerability and the phenomenology of interdependency. Journal of the British Society for Phenomenology, Special Issue, 49(3), 183–192.

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Chapter 10

Vulnerability, Interdependence and the Care for the Living Elodie Boublil

10.1 Introduction The recent development of critical phenomenology, ecofeminism, and the philosophy of the environment has considerably renewed our philosophical reflections on the concept of nature. The concept of the human being and the anthropocentric worldview developed by Western philosophy during the Renaissance has also been put into question and challenged by biocentrism or ecocentrism, which have argued for the recognition of the intrinsic dignity and moral standing of all living beings (biocentrism) or ecosystems (ecocentrism). Anthropocentrism is defined “as a theory of value which maintains that only human beings or their experiential states have intrinsic moral value. Consequently, everything in the extra-human world—for example, non-human animals and other living organisms, species of living organisms, or complex ecological systems—bear only instrumental value for the promotion of human welfare” (Thompson, 2017). Contemporary environmental ethics aims to overcome this anthropocentrism (that amounts to a kind of egoism). Indeed, it argues that a “satisfying environmental ethic” “must state that at least some parts of the non-human world are morally considerable for their own sake” (Thompson, 2017). Nevertheless, as Callicott rightly underlines one can aim at overcoming anthropocentrism yet one cannot get rid of the anthropogenic standpoint associated with our acts of evaluation: “all attributions of intrinsic value are anthropogenic: originating in and dependent upon human acts of evaluation” (Thompson, 2017; Callicott, 1989).

E. Boublil (*) Faculty of Health/Faculty of Humanities (LIS EA 4395), UPEC (PARIS XII), Créteil, France e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 E. Boublil, S. Ferrarello (eds.), The Vulnerability of the Human World, Philosophy and Medicine 148, https://doi.org/10.1007/978-3-031-41824-2_10

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Indeed, downplaying the status of the human being and her moral standing as a moral person may undermine her ethical responsibility for other living beings, biodiversity, and environmental issues. The modern paradigm of the human being as a rational, abstract individual who earns her autonomy by separating herself from the world and others and achieving self-mastery must be critically assessed. Nevertheless, contemporary developments in phenomenology and philosophical anthropology that insist on embodied cognition, inter-affectivity, and cultural biology show that it is not necessary to level down the human being to argue for the preservation of the environment and other living beings. In this paper, I critique the ‘insular autonomy’ promoted by Cartesian and Lockean philosophy to examine how it contributes to forging a concept of ‘nature’ that cuts the subject from its ontological roots as an embodied and finite subject. One shall rather acknowledge the ecological dimension of human existence by extending the principle of justice and responsibility to the environment (Jonas, 1990), and consider human organisms as autopoietic and incarnate beings whose freedom is shaped by interaffectivity and possibly described by “cultural biology” (Fuchs 2017, 2021). Furthermore, this ecological dimension urges us to rethink individuation as a dynamic process (Simondon, 2017) that links together all forms of life while articulating their ontological and ethical relations according to a process of differentiation that does not deny the human being her ethical competency but rather extend it to all relations, she is in. The concepts of plasticity and resilience show that vulnerability and interdependence constitute the pillars of this new paradigm of individuation for the living world. As analyzed by Roberto Esposito (2021), the concept of immunity expresses the transformation of the self in the era of biopolitics and the possible instrumentalization of biology in political and social paradigms. While his account of community, based on an inclusive understanding of immunity, may help us rethink our ethical and political relation to life forms, environments, and other human beings, I argue that the biological and natural anchorage of human beings do not withdraw their specific responsibility as persons endowed with rights and duties. Instead, the relational account of the human person I would defend – both from an ontological and an ethical perspective – aims to renew our approach to vulnerability in bioethics and help us foster an inclusive concept of care that considers the specific moral standing of the person (contingent on her anthropogenic standpoint) yet preserve the ethical value of her relations and ecosystems.

10.2 From Self-Mastery to Exploitation: The Insular Autonomy Many philosophical works in environmental philosophy and critical phenomenology put into question the Cartesian legacy, which gave humanity a mechanistic picture of nature and human bodies. “To become as master and owner” of a ready-­ to-­hand nature to satisfy human needs and projects has led to the depletion of soils, to the devastation of the earth seen as a set of resources, and consequently to the endangerment of our civilization.

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What was considered an opening of the infinite world (Koyré, 1957) calls now for a new closure which depends on the preservation of the earth and the life of its inhabitants. Indeed, the sixth mass extinction, the destruction of biodiversity, and the scale of climate change, notably leading to forced migration, reveal the urgency of an ethical and cultural overhaul of our ways of living, with other living beings, in a balanced natural environment, to paraphrase the formulation of Ricoeur’s “small ethics” (“living well, with others, in just institutions,” (Ricoeur, 1993). The principles of justice and responsibility frame the reflection that governmental and non-­ governmental organizations carry out to find a way out of this destructive process and preserve the living world. As Hans Jonas wrote: We have not so much to watch over the right of humans to come – namely their right to happiness, which, given the oscillating concept of happiness, would, in any case, be a misplaced criterion – as over their obligation, namely their obligation to be true humanity (…). It is our fundamental obligation to the future of humanity, from which only all other obligations to humans may flow. (Jonas 1990, 93)

People (and states) are urged to implement a legal and ethical framework to control technological progress so that future generations may live, and humanity survive. Indeed, Jonas considers that humankind is responsible for nature’s vulnerability – a vulnerability increased by human activity and the technological activities and transformations carried out by human beings (Jonas, 1990, 279). Jonas’ethics of life thus set itself the task of creating, first and foremost, the conditions of possibility of human existence and the perpetuation of the living world, despite the threats that technological development poses to it. Suppose the subject must be reframed, considering her embodied relation to her environment as a living person. In that case, the human being nevertheless retains the task, the responsibility, and the concern to take care of and preserve the life and the living beings who inhabit the earth with her. In other words, it is less the autonomy of the Cartesian subject or her will and responsibility – as faculties of the human mind – that cause the adverse decisions and actions that led to a worsening of the Anthropocene, but rather the will to power and the instrumentalization of life and the living beings that motivated their implementation. The problem is then less an anthropological problem (related to the definition of the human being) than an ethical and political problem. Or, rather, the two dimensions cannot be separated as phenomenological anthropology and hermeneutics taught us. Dasein is in the world and before the world, as Ricoeur would say – rephrasing the phenomenological concept of being-in-the-world to describe our relation to Nature: “When the human being excepts herself from nature as if she were nature’s other then, in the language of Heidegger, she stages herself as the center of a great spectacle that she organizes, and also of an inert site of things to be manipulated. We must keep the subtlety of this fragile balance as both in nature and at the same time exceptional in nature (dans la nature et en même temps exception de la nature)” (Ricoeur, 1993). The free and autonomous individual designed by the liberal paradigm is often designated as responsible for the contemporary ecological situation and its constant degradation. Yet, she never met the requirements of the provisional morality that

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Descartes assigned to human freedom, and which commanded her to “change its desires rather than the world’s order.” Unable to change her desires, the individual sinks instead into an infinite pleonexia that compensates for the exhaustion of the natural resources she exploits. Unable to change the world’s order, despite her work and techniques, she paradoxically perpetuates the structural conditions of its annihilation and produces a virtual world that makes up for the destruction of the natural one. Such an observation speaks not only of the collapse of the Leviathan but also of the contemporary failure to think adequately of our relationship to nature and culture within a social and political paradigm that can no longer escape a reflection on the ecosystem in which society itself takes shape and unfolds. Thus, challenging the paradigm of the modern subject consists less in refuting its sense of freedom and responsibility – without which no decision can be assumed, identified, and carried out – than in rethinking the models of autonomy and authority that underlie it, and our rationality-based conception of personhood. A fair critique of this framework would therefore consist of (1) rethinking the anthropological foundation of the subject’s individuation; (2) rebuilding its social and political role in ensuring the coextensive viability of the lifeworld and the environment; (3) retrieving what is properly human in the human being (what Jonas calls “true humanity”), namely its ethical capacity for responsiveness and care and her moral standing as a person endowed not only with rights and duties, but also with affects and relations. Indeed, by confusing the subject of law as a source of freedom, and reflexive consciousness, as a source of decision, modern reflection missed the dialogical and relational structure inherent in intentional consciousness and the embodied and natural anchoring that guarantees its individuation, its singularity, and its relationship to others – and consequently the concrete and effective implementation of her freedom. In other words, a decision does not engage the rational subject alone as an autonomous entity. It influences all her relationships and, even more, originates in her embodied relationship with the world that structures her perception and grounds her existential sense of freedom. As Thomas Fuchs writes: We encounter each other as embodied subjects, as living beings with a body that is not a brain construct, either from an inner or outer perspective, but rather a physical-experiential unity. And just as there is nobody in the brain, there are no brain worlds, no ‘cosmos in the head.’ (...) Reality is constituted in the mutual perception and recognition of individuals who know that they are not only the construct of the other and the other is not theirs. And as the other becomes real for us in his body, we also become real for ourselves, as bodily beings appearing in their bodies. Embodiment, lifeworld, and reality mutually ground each other. (Fuchs 2021, 155)

Thus, the anthropological paradigm that underlies our representations of the living world also determines how the human being apprehends authority from a political and ethical point of view and her sense of responsibility between the power exercised over an environment or another subject and the power to let it be and grow. There lies the ontological and ethical gap that separates the alienating regime of the Anthropocene from a new era based on cooperation, interdependence, and human respect for the living world and biodiversity.

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The question, then, is less whether it is necessary to attribute rights and intrinsic value to all living beings, as in biocentric or ecocentric perspectives – in other words whether the issue is a “rights issue” based on the direct causality related to one’s moral standing – than an anthropological and ethical issue that aims to assess the vital standing of our “relations.” The emphasis on the interdependence of life forms and the dynamic and relational dimension of individuation regimes invites us to renew the way we think about intertwining the natural, biological, and cultural dimensions that shape our environments. Marjolein Oele takes the example of the skin to demonstrate this porosity of living beings and their ontological interdependence: What the account of the evolutionary intersection of nature, culture, and environment shows in conjunction with our microbiotic coexistence is that we are always already emerging co-­ existent beings and that our skin is not static but, in fact, culturally, biologically, and environmentally adaptive and dynamic: its evolution thereby co-creates place and time, and not just for us individually, but as a culture located in a specific climatological environment, with specific technologies, ways of providing nutrition, and so on. (Oele, 2020, 129)

From this observation, she draws an ethical account based on affectivity and the equipollent value of all life forms. But if porosity and plasticity are indeed the characteristics of life, as our next two sections will show, I would like to argue that the human being, as a person, inscribed in moral, social, and political relations is endowed with a particular responsibility in caring for her environment and the living beings who inhabit the world with her. In other words, the critical assessment of the anthropocentric worldview inherited from the Renaissance does not do away with philosophical anthropology and the necessity to acknowledge the ethical status of the human being based on her existential and spiritual horizon – broadly construed – rather than on her sole biological condition.

10.3 Plasticity and the Ecological Paradigm of Subjectivity To rebuild the anthropological framework on non-atomistic premises, one must consider the phenomena of plasticity that characterize life in general and human life, in particular. The specific plasticity of human brain’s functioning, for instance, demonstrated by neuroscientific and phenomenological accounts of embodied cognition, invites us to rethink the philosophical symbolism generally associated with decision-making processes or the status of the human being within the social and natural world as if she were an “empire within an empire.” French philosopher Catherine Malabou precisely analyzes this relationship between the contemporary enthusiasm for neurosciences, the discovery of the plasticity of brain functioning, and the type of representations they generate on the social and political level. Far from being a computer that would function independently of the body, and contrary to any dualism, the brain is itself shaped by the body’s life processes – whether it is the objective body (Körper), the brain adapts and readjusts itself, for example in the

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face of a failing limb, or the lived body (Leib), the brain is shaped by our relationships, our interactions, and our practices. As Malabou writes: It was urgent to show that the brain, far from being simply the place of mental operations, is a device that includes emotions, affects, habits, and the memory of experiences and practices. The brain is somehow everywhere at home in the body's folds, in the same way that the body sculpts, through its exercises and desires, the neural connections it solicits. The organism today no longer refers to the body alone but to the whole formed by the brain and the body. (...) Thus, because of its plasticity, the brain is largely our work and what we do with it. This responsibility, both biological and political, delimits at the same time the horizon of a new philosophical thought. (Malabou, 2011, 8)

The notion of plasticity first refers to the creation and destruction of neurons throughout one’s life. This process generates a kind of constant reconfiguration of the architecture and tree structure of the brain. The notion of plasticity, therefore, has both a literal and a metaphorical meaning, as it allows us to show how our lifestyles reciprocally influence our bodies. According to Malabou, there are three forms of plasticity: developmental plasticity (related to our genetic makeup), modulation plasticity (related to our interactions), and repair plasticity (related to neuronal reconfiguration activity following an accident, for instance, or a pathology). This conception of plasticity calls into question the idea of a brain as an “isolated center,” a “cosmos in the head,” as Thomas Fuchs further explained (Fuchs, 2017). On the contrary, plasticity highlights the inseparability of the body-brain couple by affirming a form of openness and adaptability that goes against a desire for prediction or predetermination and showcases human vulnerability and contingency as the very condition for ontogenetic processes. As Fuchs further explains: The dynamic and continually modified relationship between the brain and the environment is only possible by means of the body or the organism as a whole. In these interactions, the brain functions—as we shall see—primarily as an organ of mediation and transformation, for example, transforming perceptual into motor activity, or experiences into memory, thereby expanding possibilities for future interaction with the natural and social environment. The brain functions as an organ of interrelations, and only as such does it become an organ of the person. (Fuchs, 2017, 68)

The concept of “resilience” combined with that of plasticity somehow redefines the coordinates of human freedom. It refers to the ability of the living being to repair and maintain her homeostasis. It indicates that the subject is irreducibly a living being whose incarnation is irreducible. Far from representing an entanglement of her freedom, such a situation is the condition of its realization. The subject’s individuation – its plasticity – does not make her an “impregnable citadel” (Fuchs, 2017) from the top of which she would dominate the natural and human worlds. It shows the dynamics of growth and transformation at work in the living and the regime of interrelations that constitutes it. In other words, “everything is connected,” and a relational account of the human person built on vulnerability and interdependence may offer new ethical roads to consider its relationship with the living world and other human beings and reflect back on her ontological status and constitution.

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10.4 Vulnerability & Interdependence: A Phenomenological and Relational Paradigm for the Living World In the biological sense, life is not a totalizing and static principle that would be expressed unequivocally, and that would be homogeneous through all forms of life  – be they natural, social, or political. But it refers, from a philosophical and epistemological point of view to an experience of growth, to a dynamic movement that articulates the relationships of individual living beings and the ways they shape and interact with their environment. Indeed, living is characterized by a dynamic dimension; it develops from processes of separation and interrelations, and it shows an organization that prioritizes and regulates information exchange while interacting with an “Umwelt” (environment). These characteristics explain how a living organism will differentiate itself qualitatively and quantitatively from other living organisms and the environment in which it evolves. Thus, the observation of the living being’s rhythms, and the autonomous morphogenesis of the organism, invite philosophers to look at real individuation processes to reflect anew on human anthropological constitution. Indeed, this genetic account of human life bears consequences for our representations of freedom, identity, and the self, since philosophers previously explained these notions from an atomistic or monadic vision of the individual (cf. Sect. 10.2). Concepts of plasticity, resilience, and genesis make it possible to move from a conception of individuation drawn from an a priori representation of the individual – Descartes posits that the human being is made of a body and a soul and then questions the conditions of its individuation, ultimately operated by the cogito’s reflexivity – to a representation of the individual drawn from a description of individuation and its various level of differentiations, from the biological level to the spiritual/personal one. Such a paradigm shift reveals the fundamental importance of the “milieu” in which the living organism unfolds and takes shape – whether this environment/milieu is the biological or biochemical environment of a cell or the interpersonal, emotional, or social environment of a person. Simondon explains: “The living individual is a system of individuation, an individuating system, and an individualizing system” (Simondon, 2017, 28). Individuation is, therefore, “an operation, what makes a being itself, different from all others, it is neither its matter nor its form, but it is the operation by which its matter has taken shape in a certain system of internal resonance” (Ibid.). Simondon thus changed the conceptual paradigm to account for the organization of the living. The living being is individualized by its relationship to the environment to which it relates both through sensation and perception: “all the functions of the living are ontogenetic to some extent, not only because they ensure an adaptation to an external world, but because they participate in this permanent individuation that is life. The individual lives to the extent that she continues to individualize. She individualizes through the activity of memory as well as through imagination or inventive abstract thought” (Simondon, 2017, 209).

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The individuating level of “personality” brings human freedom into play since it is realized through the crises of existence and the phenomenon of resilience. As a natural and cultural being, this dual aspect of the human being is not reducible to one or the other dimension. It points to an ethical gap – like the explanatory gap – that does not lead to entitlement and privilege but rather to responsiveness and responsibility vis-à-vis other living beings. The use of biological concepts in contemporary political philosophy, and the way biological concepts are framed, based on a philosophical representation of the self, demonstrate this connection between the two levels of description and the need to adequately address the ethical challenges posed by cultural biology.

10.5 Immunity and Responsiveness: A Critique of the Anthropocentric Perspective in Biology The biological vocabulary of immunity conveys a representation of the living and the human being that first borrowed from the political-legal lexicon. By posing the immune system as a system of “discrimination” in the literal sense of the term, as an organ of differentiation between what is “clean,” “appropriate” for the individual and what is not, this epistemological discourse pictures the individual as an entity strictly separated from others. In a book titled Self and Not-Self, Cellular Immunology (1969), virologist Franck Macfarlane Burnet (1899–1985) used the philosophical categories of “self” and “non-self” to describe the activity of the immune system. This distinction will greatly influence how immunology will develop and think about its object over the last third of the twentieth century. However, as Thomas Pradeu explains: The immunological model of the self and non-self is characterized by two presuppositions, self-preservation and a relative closure to exteriority. The organism is seen as an isolated and withdrawn being, that is, closed, independent, and autonomous. However, recent observations on tolerance suggest the falsity of this assumption. It, therefore, seems necessary to promote, against internalism, an understanding of the organism as a reality open to its environment, that is to say, a heterogeneous reality, in that it welcomes within it external elements (parasites, bacteria...) and results from the influence of these elements. A non-­ internalist vision of the organism makes it possible to understand it as a reality open to exteriority and constructed in and by this exteriority. (Pradeu, 2005, 872)

This relational vision seems more relevant than an internalist vision based on the conception of the individual as a closed-off entity radically separated from its environment – defined as anything perceived as non-self – and which cannot account for autoimmune diseases or allergies, for example. Consequently, the immune system should rather be conceived as a “system of relationships.” One can immediately perceive the political translation of these two opposite views of immunity, whether we consider the immune system as the gatekeeper of a monadic self or the immune system as a bridge to exteriority and a system of relationships. In his recent works, Roberto Esposito – inspired by Foucault's analysis of governmentality – reflected

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on the concept of immunity and how it frames our contemporary biopolitical framework. The shift – reinforced by the Covid-19 pandemic – from the immunity paradigm used in biology to the political-legal paradigm of immunity is problematic. As the Italian philosopher puts it: Just as the immune defenses of the law exempt us from the obligation to obey such general norms, our immune system protects us from such diseases to which others remain exposed. But this passage from one field to another is not without effect. Introducing a politico-­ military vocabulary in a different framework, such as medicine, produces a biopolitical hybridization whose status is extremely problematic. (Esposito, 2021, 11)

Indeed, representing immunity as a process of exclusion or “setting apart” on the biological level will not have the same repercussions when transferred to the political and social imagination as if one considers immune mechanisms as mechanisms of recognition, interrelations, information exchanges and interdependence. Esposito particularly insists on this paradigm shift in our collective imaginary during the Covid 19 pandemic: Political representatives, national and local, are judged according to the level of immunization in their territories. However, something even more general comes to invest the entire social sphere, threatening to turn it into a huge immune bubble. Closure, confinement, distancing – which only a play on words in bad taste can describe as ‘social’ when it is only desocializing – are they anything other than immune devices that, little by little, come to occupy the entire domain of individual and collective existence? (Esposito, 2021, ibid)

Therefore, there is a form of constitutive tension on the ethical level inherent in the concept of immunity. This tension can give rise to what Esposito calls “thanatopolitics”(Esposito, 2019, 8), the politics of death, as in the case of Nazism or other forms of totalitarianism, where the immune paradigm came to absorb the community completely to the point of displaying a logic of destruction and annihilation. According to Esposito, the challenge is not to choose between immunity or community but rather to find the balance between these two dimensions by conceiving immunity as a relational system: Certainly, immune systems are necessary; no individual or social body could do without them. (Esposito, 2021, 138)

The challenge is to be able to think about immunity and immunization fruitfully, to design a community that is precisely open to singularities, and to think of individuals as entities which are not withdrawn, closed on themselves, but which also develop themselves through interdependence and relationships. According to Esposito, the Covid-19 pandemic confirms the “age of immunity” and the biopolitical reading proposed by Foucault. But he aims to show that the globalization of this phenomenon linked to the pandemic is an opportunity for a positive understanding of biopolitics that would transform our relationship with other living beings, taking into consideration interdependence and what he terms “co-immunity.” In other words, there would be a balance to reinvent between “immunity” and “community” based on the idea of constitutive interdependence linked to the recognition of a shared vulnerability:

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Peter Sloterdijk has already spoken of ‘co-immunity,’ designating through this expression the ethical obligation and the new pact that living humans must enter among themselves. Over the past year, we have experienced a community of pain that has crossed all borders, making the constitutive fragility of our vulnerable and overly exposed lives heard. Today, the global protection of every one of us is becoming more than a political opportunity, the categorical imperative of our time. From a mechanism of individual protection and social distancing, immunity can eventually become co-immunity: something capable of uniting people no longer through dissociation and exclusion but using a new alliance in which the intersection between biology and politics – even what has been called biopolitical – can reveal a common ground that has never emerged on the surface of history. From this necessary change – imposed on us by the pandemic – we must make an opportunity and a choice. Only in this way can we turn the most terrible event of our time into something akin to a new epiphany. (Esposito, 2021, 21)

According to Esposito, the body is the biopolitical site par excellence; it is the place where the tension between life and politics is articulated: “the body is the most immediate terrain of the relationship between politics and life because in the latter alone it seems protected from what threatens to harm it and from its tendency to surpass itself, to be altered. It is as if life – to remain so – must be understood and contained within the body's limits” (Esposito, 2021, 36). If the body can be a place of control, it is also the place through which the human being can understand herself again as vulnerable and interdependent. By thinking about the body from the perspective of political immunization and problematizing our contemporary relationship to immunity, Esposito rethinks the terms of our political communities. According to Foucault biopolitics refers to the government of individuals and populations. From Esposito’s perspective, a third parameter deserves to be considered: that of the relationship of our bodies to technologies. This relationship takes the form of anthropotechnics and transhumanism, but also of a will to control an immunity illusorily understood as a road to invulnerability. In the context of anthropotechnics, as in the context of an understanding of immunity in terms of immortality or self-integrity, it is our perception of vulnerability that is at stake: “What in this total mobilization is entirely evaded is the essential relationship that the body has with its vulnerability  – which corresponds ontologically to the inevitably finite character of human existence” (Esposito, 2021, 208). Thus, the political analysis developed by Esposito leads us to think about the ethical implications of the responsiveness displayed by the human body through its individuation processes. Responsiveness is the corollary of the vulnerability of the human body and the place from which human beings can experience and motivate their sense of responsibility (Waldenfels, 2006; Oliver, 2018). As Kelly Oliver explains: “The primary obligation of response ethics is the responsibility to engender response or facilitate, rather than close down, the ability to respond in oneself, other living beings, and the environment. Response ethics is based on taking responsibility for the other's ability to respond, which is to say, not only listening to the other but also taking responsibility for that listening and the consequences of it” (Oliver, 2018, 101). The biological and natural anchorage of human beings does not withdraw their specific responsibility as persons endowed with rights and duties. Rather, the relational account of the human person we foster may renew our

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approach to vulnerability in bioethics and help us design an inclusive concept of care that acknowledges the singular moral standing of the person yet preserves the ethical value of her relations and living conditions. Our last section will further reflect on what makes us humans and analyze how our ethical capacity for responsiveness and care may ground a substantial and individuated account of personhood that considers not only our rights and duties but also our affects and relations (Steinbock, 2021). In this sense, the philosophical critique of anthropocentrism does not preclude us from elucidating the anthropogenic constitution of the world, yet promoting the value of all forms of life.

10.6 From Responsiveness to Relational Dignity The philosophical relation between responsiveness and responsibility acknowledges the twofold aspect of human life as characterized by exteriority and openness (vulnerability) and interiority (responsibility and care/empathy). From this response ethics can emerge an understanding of dignity as “relational dignity.” In other words, it would no longer be a matter of deciding who has dignity and who does not but to conceptualize anew intrinsic dignity itself as being fundamentally relational and contingent on the structure of personhood, fulfilling thereby the “human” in mankind as she cares for the relationships, environments, and persons around her. In this sense isolation may severely damage one’s dignity. Far from grounding ethics or politics on the biological dimension, “relational dignity” implies that ethics and politics truly begins as the biological can no longer think. “Relational dignity” allows for “plurality” and the making of a “world,” as Arendt would say. It does not ignore the biological level of existence but rather allows for human flourishing through the constitution of a world that makes room and shows respect for all creatures. Therefore, far from pointing to a deadly or unfair separation, the anthropological difference – conceived from a political and ethical perspective – does not amount to an anthropocentric standpoint as it expresses the relational constitution of the human person and her responsibility for her social and natural environment. The reflections of Esposito and Simondon certainly operate a salutary deconstruction of modern individuality, which, under the influence of Locke or Descartes, formalized the subject to the point of emptying it of what makes it properly human. But they also make it possible to lead mankind back to the embodied dimension of its existence and to the carnal, intersubjective, and relational dynamics that it must assume, as the very condition of expressivity and agency of one’s interiority. A path is now open for a relational ethic of the human person that does not aim to subjugate nature and the world but rather to inhabit them with a spirit of hospitality and responsibility. Difference does not mean superiority as the concepts of identity and equality are no longer unequivocal. Difference allows for a necessary de-centering (dia-pherô) that exposes human responsibility for other living beings and the environment. The human being's responsibility as a person entails a renewed account of reflexivity

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based on an experiential account of interiority as a wounded and vulnerable interiority open to the dynamics of ethical individuation that grows from her encounter with alterity. In other words, the observation of the porosity of the living, its plasticity, and its processes of resilience, on the organic, biological, and natural levels, does not oppose an ethical and spiritual understanding of the person whose relational dimension – and therefore its ethical capacity – takes shape precisely in and through this co-affectivity and this fundamental responsiveness. The way we philosophically frame our vision of the human being convey bioethical and political implications for which we are accountable. In the last section of the paper, I will provide arguments supporting the view of an ethical understanding of the anthropological difference that is irreducible to any anthropocentric and anthropomorphic picture that modern natural sciences or rationalistic humanism may convey.

10.7 What Makes Us Human? The Responsibility of the Living Person In the Origins of Totalitarianism (1962), Arendt shows that the destruction of the person is the very project of totalitarianism. It fights against singularity, creativity, and a certain kind of authenticity that refers to the ability to be sincere and express one's personal note, as Edith Stein would say (Stein, 2004), to collaborate with others and negotiate through dialogue and expressions the conditions of individual and collective life. But there is another way – more hidden or pernicious – to deny personhood and difference, and that is a certain kind of conformism that pertains to liberal and democratic societies – a kind of homogenization and atomization that Arendt keeps on denouncing in her political writings and notably in the Origins of Totalitarianism and that consists in destroying the very specificity of human beings as relational, responsive, and responsible persons: What totalitarian ideologies aim at is not the transformation of the outside world or the revolutionizing transmutation of society but the transformation of human nature itself. (…) It is chiefly for the sake of this supersense, for the sake of complete consistency, that totalitarianism must destroy every trace of what we commonly call human dignity. Respect for human dignity implies the recognition of my fellow men or our fellow nations as subjects, as builders of worlds, or co-builders of a common world. No ideology which aims at the explanation of all historical events of the past and mapping out the course of all events of the future can bear the unpredictability which springs from the fact that men are creative, that they can bring forward something so new that nobody ever foresaw it. (Arendt, 1962, 458)

The ethical becoming of our social lives and political communities is contingent upon people's creativity and individuation. Consequently, it seems that denying the specific relational dignity of the person and making it a living being among others, far from helping create the conditions for the preservation and care of all forms of life, may contribute to their annihilation and replacement by a new technological

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ordering which does not think what it is doing, to paraphrase Arendt’s call for an ethics of thinking (Calcagno, 2018). In Arendt’s conception of the human condition, the epistemological break that singles out human beings from other living beings is the very condition of their individuation which is less tied to biological mortality than it is related to natality and what she calls “plurality.” Life’s relationality is analogically achieved through the sense of togetherness that binds human beings together and actualizes their sense of responsibility toward each other and toward the earth as they speak and commit to truthfulness. The human world is not opposed to the natural order. Rather, it is the ethical way human beings recognize the latter's moral standing and the necessity to care for their living conditions that allow for “new beginnings” to occur (Arendt, 1998, 177–178), thanks to plurality and speech. Consequently, the human person's ability to interpret and organize her environment is what singles her out and makes her responsible – and accountable – for the living which then stands in an ethical relation to the world characterized by alterity and that makes hospitality possible. The debate is no more on the ontological standing of one species over another, as if such differentiation could convey a sense of entitlement that would legitimate all kinds of abuses. Rather, recognizing rights and transformative powers associated with human action may emphasize the relational dignity to be achieved to ethically perform one's humanity. Minkowski introduces a distinction between what is properly human (in the ethical sense) within the human being and the biological level of the human species. This clarification is both epistemological and ethical: To primitive explanations of anthropomorphic nature, science substitutes its explanations. It thus tends to better understand nature as well as the place mankind occupies in its organization, in opposition to other animate beings and the objects found there or to the other forces that show themselves acting there. (…) Quite different is the phenomenon of the awareness of what is human in us, and beyond, in the universe. This phenomenon does not lend itself to any scientific criticism. It has no reason to narrow its scope in favor of science. It is far too primitive (as a phenomenon), far too alive for that. With it enters a new category in our life, that of the human, who, irreducible, caring neither about the explanatory need, nor the forces of nature, nor the biological properties proper to mankind, nor genesis, nor borders between beings, illuminates the universe with its clarity. Human does not mean ‘proper to humans’ or even ‘proper only to humans’ because the natural sciences understand these attributes. It has nothing to do with the discriminations that we establish in nature nor with the properties that, after comparison, we find only in humans, to the exclusion of all other beings. (Minkowski, 2021, 152)

To the French philosopher and psychiatrist Eugène Minkowski, what is human (ethical level) in human beings (natural level) is precisely what makes us persons endowed with relational dignity and responsibility  – a political responsibility as well as a hermeneutic responsibility to act according to interpretative frameworks that respect the vulnerable and care for the living. In this paper, I have shown that the anthropocentric and anthropomorphic conception of the human being as an insular individual that masters its environment through technological settings does not meet the reality of individuation processes that characterize all forms of life. By reconnecting with our embodied condition and cognition, one may uncover the fundamental responsiveness and relationality of life

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that makes vulnerability an ontological pattern of individuation. Through plasticity and resilience, though, human existence progressively integrates her need for interdependence and ‘co-immunity,’ as Esposito remarks. Yet, the dual aspect of the human being as a natural and cultural being prevents us from identifying one level to the other. Rather the constant interplay between these two dimensions – revealed by contemporary uses of the concept of immunity  – shows us the importance of acknowledging the porosity of life (interaffectivity) yet maintaining the two poles of the explanatory gap: the epistemological and scientific level of natural explanations and the ethical and spiritual level of ethical interpretations, as the latter disclose the human being’s responsibility and make room for a sense of alterity that is necessary to all forms of hospitality. As Minkowski states: “The real problem is not how mankind produces the human, but how the human comes to be integrated with mankind” (Minkowski, 2021, 157); in other words, the philosophical problem is now to investigate the singular vulnerability of the human world and its ethical and political resources and promises.

References Arendt, H. (1962). The origins of totalitarianism. Word Publishing Company. Arendt, H. (1998). The human condition (2nd ed.). University of Chicago Press. Calcagno, A. (2018). The failure of the political concept of the person? A Foucaultian-Arendtian response to Roberto Esposito. In A. Calcagno & I. Viriasova (Eds.), Roberto Esposito. Biopolitics and philosophy (pp. 127–142). Suny Press. Callicott, J.  B. (Ed.). (1989). In defense of the land ethic. Essays in environmental philosophy. SUNY Press. Esposito, R. (2019). Communauté, Immunité, Biopolitique. Repenser les termes de la politique. Éditions Mimesis. Esposito, R. (2021). Immunitas. Protection et négation de la vie. Seuil. Fuchs, T. (2017). Ecology of the brain. The phenomenology and biology of the embodied mind. Oxford University Press. Fuchs, T. (2021). In defense of the human being. Foundational questions of an embodied anthropology. Oxford University Press. Jonas, H. (1990). Le principe responsabilité (2nd ed.). Seuil. Koyré, A. (1957). Du monde clos à l’univers infini. Gallimard. Malabou, C. (2011). Que faire de notre cerveau ? Bayard. Minkowski, E. (2021). Vers une cosmologie. Les Éditions des Compagnons d’Humanité. Oele, M. (2020). E-co-affectivity. exploring pathos at life’s material interfaces. SUNY Press. Oliver, K. (2018). Response ethics. Rowman & Littlefield. Pradeu, T. (2005). Les incertitudes du soi et la question du bon modèle théorique en immunologie. M/S. Médecine Sciences, 21(10), 872–875. Ricoeur, P. (1993). L’éthique, le politique, l’écologie. Entretien avec Paul Ricœur [Propos recueillis par Edith et Jean Paul Deléage]. Écologie politique. Sciences, Culture, Société, 7, 1993. Simondon, G. (2017). L’individuation à la lumière des notions de forme et d’information. Millon Éditeurs. Stein, E. (2004). Der Aufbau der menschlichen Person. Vorlesung zur philosophischen Anthropologie (ESGA 14). Freiburg.

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Steinbock, A. (2021). Knowing by heart. Loving as participation and critique. Northwestern University Press. Thompson, A. (2017). Anthropocentrism: Humanity as peril and promise. In S.  M. Gardiner & A.  Thompson (Eds.), The Oxford handbook of environmental ethics (pp.  77–90). Oxford University Press. Waldenfels, B. (2006). Grundmotive einer Phänomenologie des Fremden. Surhkamp Verlag.

Chapter 11

From Digital Medicine to Embodied Care Francesca Brencio

We’re no computers, Sebastian. We’re physical. Blade Runner (1982)

11.1 The Rise of Digital Medicine: A Challenge in the Name of Health? The Person as an Industrial Palace (Der Mensch als Industriepalast) is an artwork of Dr. Fritz Kahn (1888–1968), a German physician who in 1926 portrayed the body as a complex chemical plant, making comparisons between the human body (and nature), technology and the chemical industry. This interpretation was in line with the great enthusiasm towards technological progress and the invention of a variety of machines typical of the first part of the twentieth century. This is the era of Futurism, a cultural and artistic movement which contrasts the past with modern civilization, glorifying the invention of the machine. The “myth of the machine” combines the aspirations of modernity with the renewal and social transformation typical of those years. In literature, the advent of the machine takes on the value of a symbol, capable of fueling the fantasies of the collective imagination. The exaltation of the machine becomes a kind of religion: the machine is transformed into the means and end of artistic creativity and aesthetic sensibility. The machine becomes a metaphor for existence and offers the illusion of a concrete and objective foundation in a worldview that is in many respects abstract and irrational. It is in this cultural environment that Dr. Fritz Kahn describes (and draws) the human body as an industrial site: each part of the body is compared to and visually represented as

F. Brencio (*) Research Group “Filosofía Aplicada: Sujeto, Sufrimiento, Sociedad”, Andalusian Research Plan, Code: PADI-HUM-018, University of Seville, Seville, Spain e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 E. Boublil, S. Ferrarello (eds.), The Vulnerability of the Human World, Philosophy and Medicine 148, https://doi.org/10.1007/978-3-031-41824-2_11

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chemical plants and mechanical devices. In his understanding, the body is conceived as the most skillful machine in the world, the potentialities of which are still to be investigated. In another artwork entitled The doctor of the future (Der Arzt der Zukunft) (1925) Dr. Kahn portrays the physician of the future who remotely monitors patients’ health from his desktop through the use of a variety of applets.1 This illustration anticipates the exponential developments of so-called digital medicine and the massive recourse to applications related to health. Digital medicine is an expanding interdisciplinary field of medicine and of pharmaceutical companies concerned with the use of technologies as tools for measurement and intervention in healthcare. Mainly regarded as the future of medicine, digital medicine may assure at least four important goals: the increasing efficiency demanded in any field of medicine; the improving medical quality of treatments and interventions; the sustainable economic success of these interventions; and patient safety. Mainly grounded on systems and products driven by high-quality hardware and software, digital medicine offers strategic opportunities in providing medical services globally, also through the deployment of smartphone technology, Internet communication and telemedicine: Digital medicine products […] support health research and the practice of medicine broadly, including treatment, recovery, disease prevention, and health promotion for individuals and across populations […]. Digital medicine products can be used independently or in concert with pharmaceuticals, biologics, devices, or other products to optimize patient care and health outcomes. Digital medicine empowers patients and healthcare providers with intelligent and accessible tools to address a wide range of conditions through high-quality, safe, and effective measurements and data-driven interventions.2

The emergence of digital medicine is relatively recent: it is part of the general revolution of digital technologies, the promises of which are grounded on significantly improving the margins of our lives in many respects. The rise of software-driven technologies has produced a change in the world of health, both at the level of information management (the increase in the flow of data, its transmission, and its protection) and clinical practice. In the landscape of digital medicine, telemedicine and mobile health occupy an important place. Telemedicine can be defined as the set of IT and medical techniques that enable patient care at a distance by providing appropriate services. Mobile health (mHealth), on the other hand, as defined by the World Health Organization, is represented by interventions via mobile devices for mental health, considered as an integral part of public services aimed at mental health.3

 See U. Kühne, Der Mensch als Industriepalast, published online in “Heise”, available at https:// www.heise.de/tp/features/Der-Mensch-als-Industriepalast-3384323.html 2  A. Coravos, J. C. Goldsack, D. R. Karlin, C. Nebeker, E. Perakslis, N. Zimmerman, M. K. Erb, Digital Medicine: A Primer on Measurement, in “Digit Biomark” 2019;3, p.  33, doi: 10.1159/000500413. 3  For some basic definitions, I refer the reader to the World Health Organization, Seventy-first World Health Assembly A71/20, Provisional agenda item 12.4, 26 March 2018, Use of appropriate digital technologies for public health, available at https://apps.who.int/gb/ebwha/pdf_files/ WHA71/A71_20-en.pdf 1

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These mobile devices include patients’ mobile phones, their monitoring and measuring devices, personal digital assistants (PDAs) and other wireless devices, such as smartphone apps, text, video or voice messaging interventions, real-time tracking, and web-based interventions. According to the United Nations, more than 90% of the world’s population uses these types of technologies on a daily basis and it is extremely easy to install them on their mobile devices. Another extremely appealing factor is the 24-h availability of this type of technology. The rise of digital medicine products is an outcome of the massive rise of machine learning and artificial intelligence methods: “A key component of these systems is the transformation of raw physiological or environmental signals into health indicators that can be used to monitor and predict aspects of health and disease”.4 Through the use of computational processes the collected data are transformed into outputs which represent the health indicators monitored through high-quality hardware and software. The use of digital medicine is ordinary and well-established in clinics and hospitals, for example, digital measurements like using ambulatory ECG monitoring to detect arrhythmias in cardiac patients, or portable ECG technologies. The use of digital medical tools is also becoming quite common at-home, where these technological devices must measure and collect clinically meaningful information which lead to improvements or changes in treatment and practices of care. Digital measurement in medicine is not meant to “replace clinics or clinicians entirely […]. The delivery of clinical care such as intravenous drugs or surgery, and the value that patients place in their relationship with their provider, cannot be replaced by digital tools. Nonetheless, when used appropriately, digital measurements can improve care by giving clinicians more complete information”.5 However, digital medicine tools and apps are not only confined to measurements or to monitoring. Mobile therapy (mTherapy) refers to any therapeutic intervention via remote mental health apps or services. There are estimated to be between 10,000 and 20,000 apps dedicated to mental health; of these, only between 3% and 4% are based on empirical evidence. Mental health apps present at least four fundamental features: accessibility, variety, anonymity, and convenience. On one hand the user can access an app via a smartphone or a mobile device that focuses on certain aspects of mental health and well-being. On the other hand, such tools cover a broad range of areas, including relaxation, stress management, and sleep. They may also offer self-help tools, therapeutic activities, and access to treatment delivered by licensed mental health professionals. The target of most apps is to cover a broad spectrum of psychopathological phenomena, including depression, post-traumatic stress, schizophrenia, bipolar disorder and addiction. Among these apps, there are some that are not specifically indicated as being for so-called mental disorders: one thinks, for instance, of apps that can monitor one’s emotional life, or those that provide guidance for coping with stress by offering mindfulness exercises, or those for keeping anxiety under control, or even those designed for the development of

 A. Coravos et al., Digital Medicine: A Primer on Measurement, p. 35.  A. Coravos et al., Digital Medicine: A Primer on Measurement, p. 39.

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emotional intelligence in children. Some apps are developed, for example, to track mood swings, others to remind people of medical appointments or to monitor medication intake, and others to provide motivating and positive messages to alleviate an outbreak of existential fragility. Mental health applications guarantee anonymity, allow users to find information and access to treatments in a way that is private and secure, and do not expose the person to the stigma which often surrounds mental health issues. Finally, they have a certain convenience, both in terms of cost (usually the cost of these apps is lower than any psychotherapeutic encounter) and location (you can use your app wherever you are). But how do these apps work?

11.2 The Neurocentric Paradigm Mental health apps operate on the basis of cognitive-behavioral therapy (CBT) and almost all are designed following the model of the computational theory of mind (CTM), according to which the human mind is an information processing system in which cognition and consciousness are also distinctive forms of computation. The computational approach is also the basis upon which neural activity is understood; in other words, following the CTM the mind is a computational system that is sustained and implemented by neural activity in the brain. The brain is thus the only agent that is able to perform its computational tasks, without needing to involve the embodied, living subject. In the words of neurophilosopher Thomas Metzinger, “We are mental self-models of information-processing bio-systems […]. If we are not computed, we do not exist”.6 Or, to put it differently, it is the brain that “thinks” and “decides”. Subjectivity and all the relevant conscious experiences are a by-­ product of brain activity: “The sense of will is an invention of the brain. Like so much of what the brain does, the feeling of choice is a mental model – a plausible account of how we act, which tells us no more about how decisions are really taken in the brain than our perception of the world tells us about the computations involved in deriving it”.7 As a consequence of this approach, the social dimension is therefore interpreted and conveyed to the user of the apps as a kind of execution of a model according to which people act. The way mental health apps are programmed and developed is grounded on a certain interpretation and understanding of the brain, that is, according to cognitive algorithms that allow the “construction” of neuronal representations or internal models that represent the world.8 If we enlarge the perspective at the core of the CTM we see that it is not simply limited to a certain  T. Metzinger, Subjekt und Selbstmodell. Die Perspektivität phänomenalen Bewußtseins vor dem Hintergrund einer naturalistischen Theorie mentaler Repräsentation, 2nd edition. Paderborn: Mentis., 1999, p. 284. 7  C. Blakemore, The mind machine, London: BBC Publications, 1988, p. 272. 8  See T.  Fuchs, In Defence of the Human Being. Foundational Questions of an Embodied Anthropology, Oxford: Oxford University Press 2021. 6

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neuroscientific view on the brain, but rather it implicitly calls into question the notion of the mind, the image of man itself, the issue of subjectivity and every aspect of social life. All these elements are reduced to physical and physiological processes according to a physicalist and naturalistic approach. In other words, the CTM is a magnifying glass on the relationship between the brain and the mind. Let’s see why. The relationship between mind and brain is one of the most fascinating topics that has engaged both the fields of philosophy and neuroscience. Historically, in the West, mind and brain were conceived as a unity. We have to go back to Aristotle who believed that our consciousness, imagination and memory were rooted in the human heart.9 It was a belief he shared with the ancient Egyptians, whose Book of the Dead endorses carefully preserving the heart of a mummy, but recommends scooping out and discarding the brain.10 From the beginnings of modernity this relationship has become conceived of as a duality11 and, as such, it is still at the core of the modern conception of neurosciences, affecting the way that mental health is understood and treated, how life and experiences are comprehended and scrutinized, as well as our value systems and social practices. Neurosciences encompass a broad range of questions about how the nervous systems of humans (and other animals) are organized, how they develop, and how they function to generate behaviors.12 But what do we mean with the words “mind” and “brain”? Scientists agree in defining the physical brain as an organ that serves as the center of the nervous system in all vertebrates and most invertebrate animals. The definition of mind is more complicated. It includes a set of cognitive faculties and aspects – such as consciousness, intentionality, imagination, perception, thinking, intelligence, judgment, language and memory – as well as noncognitive aspects such as emotion and instinct. We can say that the mind encompasses consciousness, but it is not limited to it. This is why the so-called “hard problem of consciousness”,13 namely the problem of explaining why and how sentient organisms have qualia (subjective, qualitative, conscious experiences), can be inscribed into the problem of the mind.14 In other words, the mind can also be defined as the psychological domain of all those aspects and faculties which allow us to think, to fear, to wish, to believe, etc. The questioning of the relationship between mind and brain is pretty old in the history of philosophy. However, it is only with modernity that this relationship has  Aristotle, De Partibus animalium, OUP, Oxford 1972, p. 62.  See The Egyptian Book of the Dead, Dover Publications, NY 1985. 11  See S. Finger, Minds behind the brain. A History of the Pioneers and Their Discoveries, Oxford: Oxford University Press 2000; C. Schoonover, Portraits of the Mind: Visualizing the Brain from Antiquity to the 21st Century. New York: Abrams 2010. 12  See D. Purves et al., Neuroscience (6th edition), Oxford: Oxford University Press 2018. 13  See D.  Chalmers, Facing up to the problem of consciousness, in “Journal of Consciousness Studies”, 1995, 2 (3): 200–219. 14  W. Penfield, The Mystery of the Mind: A Critical Study of Consciousness and the Human Brain, Princeton: Princeton University Press, 1975, p. 39. 9

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started to be conceived of in dualistic terms and, in order to understand this, we have to go back to René Descartes. He strove to understand not only the body, but the physical world in general and how brain activity can account for behaviors. He came up with the still influential idea that while the brain may control the body, the mind is something intangible, distinct from the brain. According to him, two substances, namely the res cogitans and res extensa, preside over different activities. The unification of these two principles was in the pineal gland, a tiny gland associated with the brain and considered the seat of the soul. During the eighteenth century, Johann Kaspar Lavater introduced the idea that physiognomy relates to the specific character traits of individuals and, as a consequence, thoughts and passions are connected with an individual’s external appearance.15 However, it is through the work of Franz Joseph Gall and his collaborator Johann Gaspar Spurzheim that the work on physiognomy was transformed into research on organology and later on phrenology.16 Phrenology suggests that we can learn everything about someone’s character by measuring the shape of his or her skull. Through careful observation and extensive experimentation, Gall believed he had established a relationship between aspects of character, called faculties, with precise organs in the brain. Phrenology became, in the context of Victorian society, a very respectable scientific theory. Instead of studying the mind through introspection, phrenology provided an attractive, biological alternative that attempted to unite all mental phenomena using consistent biological terminology. Phrenology started to be discredited as a scientific theory by the 1840s due to a growing amount of evidence against its biases and misconceptions, which also provoked a strong wave of racism and stigma. Until the 1970s, modern neurosciences were inclined to welcome the long cartesian tradition of two distinct substances, which is the foundational step of the metaphysical view of medicine and technology. More recently, neurosciences are epistemically inclined to a form of reductionism according to which biological and physical elements are always and mainly at the core of other phenomena, i.e., mental or emotional phenomena. In the context of the mind-brain problem, however, even in neuroscience there was (and still is) a certain disagreement about how the mind and the brain are in relationship. Some neuroscientists considered (and still consider) inner life and our experiences to be reducible to the activities of the brain: the neural correlates of consciousness (NCC) constitute the hypothetical minimal set of neuronal mechanisms jointly sufficient to explain subjective conscious experience. As a consequence, the mind is a product of the brain’s activities.17 In other words, our existence, our fears, our wishes, and our will are reducible to the organic  See E.  Shookman (ed.), The Faces of physiognomy interdisciplinary approaches to Johann Caspar Lavater. Columbia, SC: Camden House, 1993. 16  See M. S. Staum, Labeling People: French Scholars on Society, Race and Empire, 1815–1848. Montreal: McGill-Queen’s University Press, 2003. 17  See D.  Dennett, Consciousness Explained. Boston: Little & Company 1991; A.  Damasio, Descartes’ Error: Emotion, Reason, and the Human Brain, Putnam Publishing, reprinted in Penguin, New York 1994; A. Damasio, The Feeling of What Happens: Body and Emotion in the Making of Consciousness; New York: Harcourt Press 1999. 15

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substrate which presides over any activity and experience. However, Sir Charles Sherrington, the Nobel Prize Winner in Physiology (1932), famous for his studies of reflexes and his analysis of the integrative action of the nervous system, was skeptical about the idea of two substances and he claimed that if our being consisted of two fundamental elements, this would offer no greater inherent improbability than that it should rest on one only.18 His pupil, the renowned neurosurgeon Wilder Penfield, had another opinion. According to him, it was quite impossible to explain the mind on the basis of neuronal activity in the brain, and because the mind develops and matures independently throughout an individual’s life, he claimed that our being is to be explained on the basis of two fundamental elements.19 According to Roger Sperry, the Nobel Prize Winner in Physiology and Medicine (1981), famous for his work with split-brain research, the mind is an emergent property of brain function. He proposed that subjective experience plays a principal role in brain function and that behaviorism and reductionism must both be replaced by a more holistic view of consciousness based on the concepts of emergence and downward causation.20 In Sperry’s view, consciousness, while generated from neural activity and therefore fully dependent upon it, is nonetheless an independent entity. Against this approach was the view of Todd E. Feinberg, who refuted the claim that the mind is a radically emergent feature of the brain. For him, the inter-related concepts of emergence, reducibility and constraint on which Sperry grounded his theory should be considered parts of a hierarchical biological system. This means that the mind arises as a radically emergent feature at the top command of a non-nested neurological hierarchy. As an alternative model, he proposed to avoid any dualism through the idea that the brain is a producer of a nested hierarchy of meaning and purposes that has no top or summit. In this sense, consciousness does not depend on radical emergence theory. This irreducible aspect of consciousness can be understood as a result of brain evolution and normal neural functioning.21 A feasible path for addressing the mind-brain problem from the side of neurosciences remains the search for the neural correlates of consciousness. Recent findings show that the anatomical neural correlates of consciousness are primarily localized

 Quoted in W.  Penfield The Mystery of the Mind: A Critical Study of Consciousness and the Human Brain, Princeton: Princeton University Press, 1975, p. 35. 19  W. Penfield, The Mystery of the Mind: A Critical Study of Consciousness and the Human Brain, Princeton: Princeton University Press, 1975, p. 111. 20  R. Sperry, Mind, Brain and Humanist Values, in J. R. Platt (ed.), New Views of the Nature of Man, Chicago: University of Chicago Press 1965; R. Sperry, Holding Course Amid Shifting Paradigms, in W. Harman, J. Clark, A Reexamination of the Meta Physical Foundations of Modern Science. Causality Issues in Contemporary Science, Sausalito: Institute of Noetic Science Press, 1994, pp. 99–124; see also T. J. Voineda, Sperry’s concept of mind as an emergent property of brain function and its implications for the future of humankind, in Neuropsychologia, 1998, 36, 10, pp. 1077–1082. 21  T. E. Feinberg, Why the Mind is Not a Radically Emergent Feature of the Brain, in Journal of Consciousness Study, Special Issue entitled The emergence of consciousness, 8, 9/10, 2001, pp. 123–146. 18

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in a posterior cortical hot zone that includes sensory areas,22 but at the same time some candidate neurophysiological markers of consciousness have proven elusive. Much progress has occurred since the initiation of the modern quest for the NCC in 1990 due to neuroimaging evidence. Conceptual work by both philosophers and scientists has clarified the importance of investigating the neural correlates of both specific conscious contents, but the path still seems uncertain. The NCC by themselves can provide little information about consciousness in patients with severe brain damage, infants, non-human beings or intelligent machines. Further progress in this field will require, in addition to empirical work, theories and theoretical frameworks that address in a rigorous manner what consciousness is and what is required of its physical substrates.23

11.3 The Phenomenological Turn A paradigm shift with regards to these questions has been inaugurated by the so-­called “phenomenological turn”, which was introduced into psychiatry initially through the works of Karl Jaspers, and then followed by those of Eugene Minkowski, Ludwig Binswanger and many others. From the side of phenomenology, Karl Jaspers considered the mind-brain gap to be a mere abstraction that was not of any help for the understanding of a human being in its totality and bodily existence. He used to call this approach “brain mythology”, an expression aimed to describe how the physiological approach to the understanding and explication of the mind was simply insufficient to understand it.24 His critique of the somatic reductionism, typical of his time, fits well with the critique of the idea that the structure of psychological life is equivalent to the structure of the brain. According to Jaspers, even injuries in the brain are not valid proof of the alteration of the mind because they can only account for “centers of disturbance, not centers of performance”:25 “We only know conditioning factors for the psychological life; we never know the cause of the psychological even, only a cause”.26 In other words, the mental is not something the brain can achieve on its own, disentangled from the joint operation of the body and the world. Our mental life, the content of our inner life, our affectivity as well as our memory and behaviors cannot be the sum of partial functions localized in the physical brain: “The idea that everything psychological is at least partially conditioned by  M. Boly, M. Massimini, N. Tsuchiya, B. R. Postle, C. Koch, G. Tononi, Are the Neural Correlates of Consciousness in the Front or in the Back of the Cerebral Cortex? Clinical and Neuroimaging Evidence, in The Journal of Neuroscience, October 4, 37(40), 2017, pp. 9603–9613. 23  C. Koch, M. Massimini, M. Boly, G. Tononi, Neural correlates of consciousness: progress and problems, in “Nature – Neuroscience”, 17, 2016, pp. 307–321. 24  K.  Jaspers General psychopathology (trans: Hoenig, J., Hamilton, M.  W.). Baltimore: Johns Hopkins University Press 1997. 25  K. Jaspers, General psychopathology, p. 493. 26  K. Jaspers, General psychopathology, p. 459. 22

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the brain is correct but is too general to mean anything”.27 As a consequence of this view, Jaspers conceived “psychic life (as) an infinite whole, a totality that resists any consistent attempt to systematize it; much like the sea, we may coast along the shore, go far out into the deeps but still only traverse the surface waters”.28 The idea that the mind can be reduced to the organ substrate had many important implications in the field of mental health. The consequences of this materialistic monism affected the biological approach to psychiatry between the end of the 1800s and the beginning of the 1900s. Mental disorders were considered to be brain afflictions, following the legacy of the work of the eminent neurologist Wilhelm Griesinger. This idea is still at the core of neurosciences but, as seminal findings have shown,29 our mind – the contents of our inner life, our affectivity as well as our memory and behaviours – cannot be the sum of partial functions localized in the physical brain. The limits of this brain-based approach to the mind are stressed in several cardinal works by Thomas Fuchs. In his words: “It is not in the brain that we discover conscious experiences, rather only the neuronal processes or correlates that we assign to them. Yet during this assignment, neuroscience can still make the mistake of overhasty localization, thereby arriving at a new form of “phrenology.”30 One of the most important contributions of the phenomenologically informed approach to neurosciences is the reorientation of the causal-effect mechanism in favour of a circular interaction between the brain and the environment in which it is embedded. As recently shown by Fuchs,31 neurosciences consider the brain as: a constructor, asking how the neuronal machinery produces the experienced world and the experiencing subject. Consciousness thus appears not as the relation of a living being to the world, but becomes an internal representation of the external world inside the head. In this conception, the brain is considered as a system in itself, in opposition to the remainder of the body as well as to the surrounding world. The body remains a physiological carrier mechanism for the brain, which supposedly even as a bodiless brain- in- a- vat could bring forth consciousness, as a “cosmos inside the head.”32

This attitude neglects the reciprocal relationships and circular processes in which the brain is embedded, processes that requires a circular concept of causality in which neither the mind nor mental issues can be considered as “secretions of the

 K. Jaspers, General psychopathology, p. 496.  K. Jaspers, General psychopathology, p. 17. 29  F. Varela, E. Thompson, E. Rosch, The Embodied Mind, Cambridge, MA: The MIT Press 1991; S. Gallagher, How the Body Shapes the Mind, Oxford: Oxford University Press 2005; O. Sacks, The Mind’s eyes, Toronto: Knopf Publ. 2010; G. Colombetti, The Feeling Body. Affective Science Meets the Enactive Mind, Cambridge, MA: The MIT Press 2014; M. Tsakiris, H. D. Preester, The Interoceptive Mind: From Homeostasis to Awareness, Oxford: Oxford University Press 2018; T. Fuchs Ecology of the brain, Oxford: Oxford University Press 2017. 30  T. Fuchs, Brain Mythologies. Jaspers’ Critique of Reductionism from a Current Perspective, in T.  Fuchs, T.  Breyer, C.  Mundt (eds.), Karl Jaspers’ Philosophy and Psychopathology, Springer 2014, DOI: https://doi.org/10.1007/978-1-4614-8878-1_5, p. 81. 31  See T. Fuchs, Ecology of the brain, Oxford University Press, Oxford, 2018. 32  T. Fuchs, Ecology of the brain, p. 67. 27 28

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brain”,33 rather they need to be framed in a more complex and nuanced causal relationship. The Ecology of the brain aims to show how the brain, adequately understood as an organ of a living being in its environment, is “on the one hand, connected to the living organism, and on the other hand, embedded in the natural and social environment by means of the organism’s manifold, and in particular, sensorimotor interactions”34 carried on by the body. Organism and environment develop and adjust themselves in a mutual relation. The brain is a social and historical organ of mediation, transformation, and modulation, embedded in the human organism’s relationships with the surrounding world and in interpersonal relationships. The discovery of neuroplasticity (i.e., the effects that subjective and intersubjective experiences, for example, in psychotherapeutic processes, have on the neural structure), has shown that “causes” and “meanings” (as that which is explainable and as that which is understandable) are only comprehensible when considered as being in constant interplay with each other.35 Fuchs casts light on a new pathway in the understanding of the relationship between mind and brain, proposing a new causal framework: no longer a monolinear causality going from the brain in the direction of the mind, but rather a circular concept of causality in which neither the mind nor mental issues can be considered as “secretions of the brain”.36 At this point we have reached at least two important conclusions: first, the mind cannot be located in the brain activity; and second, the brain cannot be considered the organ which exclusively forms the mind. Somehow brain and mind are in a mutual and influential relationship, and this is precisely what we need to understand. After more than one and a half centuries, neurosciences and philosophy are still struggling to examine their epistemological status and enter into dialogue. The temptation that some philosophical concepts, such as consciousness, emotions, and experience, can be explained by neuroscience through the recourse of brain-­centered approach is still ready at hand. Quoting Alva Noe, “we live in a time of growing excitement about the brain (…). Perception, memory, our likes and dislikes, intelligence, morality, whatever—the brain is supposed to be the organ responsible for all of it. It is widely believed that even consciousness, that Holy Grail of science and philosophy, will soon be given a neural explanation”.37 However, neuroscientists and philosophers who assert the possibility of explaining the mind in neuroscientific terms are challenged by the fact that mental states themselves cannot be detected within the brain itself. An example of this is offered by the subjective experience of phantom limbs, which cannot be found within the brain: “Only corresponding neuronal states but not the respective mental state of phantom experience itself can be  T.  Fuchs, The Challenge of Neuroscience: Psychiatry and Phenomenology Today, in Psychopathology, 2002;35: 319–326, p. 319. 34  T. Fuchs, Ecology of the brain, pp. 67–68. 35  T. Fuchs, Brain Mythologies. Jaspers’ Critique of Reductionism from a Current Perspective, p. 83. 36  T.  Fuchs, The Challenge of Neuroscience: Psychiatry and Phenomenology Today, in Psychopathology, 2002, 35, p. 319. 37  A. Noe, Out of our heads. Why You Are Not Your Brain, and Other Lessons from the Biology of Consciousness, Hill and Wang, New York 2010, p. XI. 33

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observed there, into the brain”.38 This was called the “brain paradox”,39 an expression aimed at underlining the ontological and epistemic dissociation between brain and mind. On one hand, the life of the mind cannot be reduced to the brain’s activities and, on the other hand, the brain’s activities are not disentangled from the life of the mind. It is in this complex and multifaceted scenario that we may understand why the CTM is inscribed into the modern trend of neuromania, conceiving the embodied, living human being as a mere series of data analyses and algorithms. Recently another of Fuchs’s works40 has questioned the image of human beings in our age, asking whether or not we are going to surrender to an image of the human as constructed by algorithms, data analyses, and forecasts of artificial intelligence; or, on the contrary, if there is still the possibility to sketch the image of the human being as an embodied, free, social and self-determining being. Against the increasing considerations of virtualization and disincarnation of the person, Fuchs defends an embodied anthropology, the very idea of our corporeality and vitality as the main source of our existence and sociality. In the process of the digitalization of the world and dematerialization of presence achieved through the contribution of AI, the real and concrete living human being is threatened, as well as the betweenness which characterizes our being in the world and being with the others. People are not programs: they possess an “eccentric position”41 which is unique in comparison with every form of artificial intelligence or artificial life lacking self-awareness. It is along these lines that Fuchs stresses the fallacy of conceiving the person as a disembodied brain. However, the brain is only an organ of a living being, serving as a mediating organ for subjective experiences. Consciousness is thus based on the joint and continuous interactions between the brain, the body, and the environment, and localizing it in the brain is impossible: “It is the human being who perceives, thinks, and acts, not the brain”.42

11.4 Health as a Moral Enterprise How do all these elements lead us to a critical reflection on digital medicine and embodied care?

 G. Northoff, “Brain-Paradox” and “Embeddment” – Do We Need a “Philosophy of the Brain”?, in Brain and Mind 2: 195–211, 2001, p. 196. 39  See G.  Northoff, “Brain-Paradox” and “Embeddment”  – Do We Need a “Philosophy of the Brain”?, in Brain and Mind 2: 195–211, 2001. 40  See T.  Fuchs, In Defence of the Human Being. Foundational Questions of an Embodied Anthropology, Oxford: Oxford University Press 2021. 41  H.  Plessner, Levels of Organic Life and the Human: An Introduction to Philosophical Anthropology. New York: Fordham University Press, 2019. 42  T. Fuchs, In Defence of the Human Being, p. 75. 38

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Technology, robotics and AI have changed our life, our sociality and our affectivity in many regards. The market offers different apps which aim to respond to our needs and to our desires. Many of these are designed to help us to meet the right partner, to be in shape by planning workouts or McMindfulness, to sleep a certain number of hours or to burn a certain number of calories, to walk a certain distance, to test our IQ and so on. But this is just a part of the story: in other regards, they have also redescribed our sociality and brought to the surface a pervasive need of social acceptance expressed through the “like” button, having more followers and shared content, or conveying the possibility to change or build our identity according to the standards which the apps offer. All these advanced frontiers of technology have also changed the way in which medicine is practiced, not only in terms of devices able to map and check vital parameters, but also in terms of the interpersonal relationships between the person and her body, her physician, and caregivers. As a consequence there is the risk of reducing health – broadly speaking – and mental health in particular to a series of algorithms and data analyses are ready to hand: “Through observation and the collation of data by procedures of measurement we are able to develop an almost mathematical knowledge of how illness can be influenced”.43 However, health is something more than the correctness of collected data related to our physical bodies or to our mental lives. The establishment of physiological and biochemical standard values according to which we are healthy may sometimes be misleading, especially when we deal with mental health. Conversely, a diagnosis of a mental disorder conveys some clinical information in a very technical language and with precise diagnostic meanings but, at the same time, it does not say so much in terms of existential meaning. The chasm between these two different yet entangled perspectives unveils the dialectic between exactness and truth: exactness is of service to meaning, but meaning is not about exactness, rather it is related to one’s own experience of the world.44 It is especially in this field that we must acknowledge that mental health is directly connected with our living, embodied, social being. In other words, it relates to our intersubjectivity as a result of a complex series of interactional processes, such as bodily resonance, affective attunement, embodiment, interactive coordination of sense-making and many others. Following the rich phenomenological tradition and its recent shift towards enactivism, in light of the circular process of relations between individual and environment, intersubjectivity may be considered as an ongoing activity in which the person constantly influences others by her actions, and vice versa.45 As such, “health is not a condition that one introspectively  H. G. Gadamer, The Enigma of Health: The Art of Healing in a Scientific Age., Wiley, Kindle edition pp. 98–99. 44  See F. Brencio, From words to worlds. How metaphors and language shape mental health, in S. Wuppuluri, A. C. Grayling (eds.), Metaphors and Analogies in Sciences and Humanities: Words and Worlds, Springer, 2022, pp. 233–250. 45  See T.  Fuchs, H.  De Jaegher, Understanding Intersubjectivity: Enactive and Embodied, in T. Fuchs, H. C. Sattel & P. Henningsen (Eds.), The Embodied Self: Dimensions, Coherence and Disorders, Stuttgart: Schattauer, 2010. 43

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feels in oneself. Rather, it is a condition of being involved, of being in the world, of being together with one’s fellow human beings, of active and rewarding engagement in one’s everyday tasks”.46 In other words, health is not something that can simply be made or produced by doctors and not confined to our physiology. It is a result of a complex process of personal and interpersonal relations and mechanisms. We could say that health may be conceived as a moral enterprise, as the result of an embodied encounter between the person and her system of values and beliefs, with her experience of illness, with her diagnosis, and finally with her prognosis and clinicians. With the progress of science in general, and medicine in particular, we have witnessed a paradox: the more science has become exact, the more the person has become abstract, and in certain circumstances disembodied. The general lack of embodied connection between individuals, and between individuals and institutions, is an important element to acknowledge in the era of connection. Health care providers struggle to remain in touch with the person in se: their views on different health conditions are parcelled into the different regions of health they are required to treat, for example, a leg, an arm, the heart, the psyche, etc. This is mainly related to the education and training they receive, largely focused on control and measurement, on the subtle art of ‘compartmentalizing’, on the very idea of ‘fixing’ something broken in people experiencing mental health conditions, for example, rather than recognizing the need of a tools and therapeutic approach. As a moral (but not moralistic) enterprise, healthcare requires clinicians and health workers to be equipped with a series of different tools that may be found in a phenomenologically-­ oriented medicine and especially in psychiatry, which may be of great help in deciphering disturbances of intersubjectivity as the origin of psychopathological phenomena. As such, empathy and person-centered care cannot be achieved through digital medicine, but rather are the result of a journey into the recognition of the embodied presence and the aliveness which constitutes the person. The phenomenological and enactive approach to intersubjectivity emphasizes these components. Following the philosophical trajectory from Husserl to Merleau-Ponty, the living body (Leib) and the phenomena of corporeality and intercorporeality become central to the understanding of intersubjectivity and living presence, especially in clinical practice. For Merleau-Ponty the body has a pre-reflective directedness towards the world, a bodily intentionality which rests on perception and action as the primary means of interaction with the world.47 The peculiar embodied presence of the therapeutic encounter seems to be hard to replace with any digital technology. As much as, for instance, the current COVID-19 pandemic has increased online psychotherapy, helping to reduce the distance between the person and the therapist, especially for those with reduced physical mobility or those who cannot escape the burdens of work or family circumstances, it has also compromised an important portion of the embodied trust between the

46 47

 H. G. Gadamer, The Enigma of Health: The Art of Healing in a Scientific Age., p. 113.  M. Merleau-Ponty, Phenomenology of Perception, New York: Routledge, 1981, p. 238.

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person and her therapist due to the lack of bodily resonance and the perception and deciphering of atmospheres and the setting,48 reducing the perception of the body mainly to what is displayed on the screen, limiting the grasping of bodily gestural expressiveness that mainly characterizes the I-Thou encounter. The digitalization of presence seems to objectify the peculiar intersubjective space typical of the clinical encounter in the asepticity of the screen. The visual nature of the media increases that interpersonal distance, which obstructs and disconnects us from the bodily space of shared intersubjectivity. The living body becomes absent and the virtual space turns out to be the epiphenomenon of a disembodied presence. The emphasis put on embodiment is not peripheral in a phenomenological interpretation of subjectivity. Interpreted as an ongoing act continuously shaped by our experiences, by the relationships and interactions with others, and the environment, embodiment is the conditio sine qua non of our aliveness: Lived experiences are ‘bound’ to the Body. Yet it is clear that the psychic subject is not primarily related to his Corporeal body as a material thing and is only mediately related to the lived experiences connected up to it, but, rather, the reverse: the psychic subject has a material thing as his Body because it is animated, i.e., because he has psychic lived experiences which, in the sense of the apperception of the human, are one with the Body in a singularly intimate way.49

The body is the condition for the possibility to meet others and the world around us: the “possibility of sociality, the possibility of comprehension (…) presupposes a certain Bodily intersubjectivity”.50 It is from this background that we can understand why an embodied anthropology may illuminate the problem of health as a moral enterprise. It was Viktor Emil von Gebsattel who pointed out how an embodied anthropology is fundamental for the goals of the medical enterprise and to overcome the risk of reducing the patient to just a case study, as someone who carries a disease and not as a person: “In the area of medicine, the scientific attitude threatens to turn the living fellow-person with all his needs, into the mere object of a technological contact and the irreplaceable unique person into a regular ‘case’”.51 Phenomenologically speaking, this is the natural attitude of medicine and in particular of contemporary psychiatry, which is disease-centered and, as a consequence, the therapeutic enterprise is modeled on drugs’ efficacy and being able to reverse a “faulty” physiological process into a “normal” one:52 “Disease and fellow-humans

 See V.  Bizzari, Absent Bodies: Psychotherapeutic Challenges during COVID-19, in Psychopathology, 2022, doi: 10.1159/000524711. 49  E. Husserl, Ideas Pertaining to a Pure Phenomenology and to a Phenomenological Philosophy. Second Book, Studies in the Phenomenology of Constitution, Kluwer Academic Publishers, Dordrecht, 1989, p. 129. 50  E. Husserl, Ideas Pertaining to a Pure Phenomenology and to a Phenomenological Philosophy. Second Book, p. 311. 51  V. E. Von Gebsattel, The meaning of medical practice, in Theoretical Medicine, 16, 1995 p. 63. 52  F.  Brencio, (Dis)Embodied encounters. Deciphering intersubjectivity in the context of drugs’ prescription, in P. A. Gargiulo, H. L. Mesones Arroyo (eds.), Psychiatry and Neuroscience Update. From Translational Research to Drug Addictions and Psychoses, Volume V, Springer (forthcoming). 48

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are the same in the clinician’s eyes”.53 An embodied anthropology is the only “alternative to a naturalistic-reductive image of the human being” and “consists in attention to the embodiment and aliveness that are constitutive of the person. No abstract inwardness, disembodied consciousness or pure spirit are the guiding ideas of a humanistic view of the person, but the person’s concrete physical existence”.54 In the era of digital medicine, health as a moral enterprise calls into question many elements, among which are the issue of technology and its applications, the concept of recognition as a preliminary step to every clinical encounter and the notion of empathy. Many authors have devoted a substantial part of their meditation to the discussion of technology, including Martin Heidegger and Hans Jonas. Even if from different perspectives  – Heidegger from an ontological perspective and Jonas from an ethical one – both authors dealt with the issue of technology in a very critical way. For Heidegger the essence of technology is not in the results, such as devices and products that may be offered to society for its progress, but rather it is a way of revealing, a kind of framework in which “things” reveal themselves.55 For Jonas technology is what measures the progress of a society and, at the same time, what threats mankind. Both authors point out the need for a critical investigation from the side of ontology and metaphysics (Heidegger), and from the ethical and bioethical perspectives (Jonas). Heidegger warns us to not confuse our mastery of technological devices and advancement of robotics, engineering or AI as if they were mere tools, because we may observe the world from a different perspective, which is from the perspective that these tools and devices serve for, namely the side of objectivation, usability and exploitation. Jonas takes into account some fundamental themes – such as nuclear war, ecological ravage, and genetic engineering – from the perspective of the ethical responsibility that addresses mankind and its global control over an improper use of technology: its power may affect life in every form.56 The philosophers’ critical views should impact our consideration of digital medicine and the most sophisticated technologies in our daily life.57 The authentic quest for recognition, which is a fundamental part of the structure of personhood, is not satisfied by the advancements in telemedicine, digital medicine or apps, but  V. E. Von Gebsattel, The meaning of medical practice, p. 60.  T. Fuchs, In defence of the human being, p. 5. 55  “The revealing that rules in modern technology is a challenge. which puts onto nature the unreasonable demand that it supplies energy that can be extracted and stored as such. But does this not hold true for the old windmill as well? No. Its sails do indeed turn in the wind; they are left entirely to the wind’s blowing. But the windmill does not unlock energy from the air currents in order to store it. […] Agriculture is now mechanized food industry. Air is now set upon to yield nitrogen, the earth to yield ore, ore to yield uranium, for example; uranium is set upon to yield atomic energy, which can be released either for destruction or for peaceful use”, M.  Heidegger, The Question Concerning Technology and Other Essays, Harper & Row, New York, 1977, p. 13 and following. 56  See H. Jonas, The Imperative of Responsibility: The Search of an Ethics for the Technological Age, University of Chicago Press, Chicago, 1985. 57  See S.  Ferrarello (ed.) Phenomenology of Bioethics: Technoethics and Lived-Experience, Springer 2021. 53 54

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rather, as an indiscernible part of our subjecthood, it is a very complex process that may be a powerful transformative resource in one’s life. Recognition has to do with empathy, understood as an intentionality directed towards the other’s experience,58 “is a distinct form of intentionality and is not to be confused or fused with closely related phenomena such as, sympathy, caring, being nice, providing service, helping somebody to solve a problem, etc.”59 In empathy “we experience the other directly as a person, as an intentional being whose bodily gestures and actions are expressive of his or her experiences or states of mind”60. Viewed from a second-person perspective, empathy may notably contribute to face-­ to-­face (professional) encounters in psychiatry and serves as a means to interpersonal understanding.61 For example, Edith Stein’s account of empathy may act as a bridge between individual psychological experience, embodied interpersonal emotionality, and our collective social moral order.62 The point of departure of this perspective is not the physical body, rather “the foreign living body as the bearer of a psychic life that we ‘look at’ in a certain way”63. This also means that the description of mental phenomena may be implemented with the contribution of empathy, underlying those elements that are not reducible to natural causality and mechanical processes. As such, all these elements contribute to an idea of curing which may be only an embodied act. Let’s see why.

11.5 Embodied Care Curing, understood as caring and restoring, is concerned with the process of recognition. This shows the essential dimension of the self, never isolated but always embedded in a relational dimension. Curing is not a disembodied practice and cannot be disentangled from its main relational trait. The sense of curing also partly included in the meaning of treatment: “The German term Behandlung is a rich and significant word for ‘treating’ people and ‘handling’ them with care. It contains the word ‘hand’, the skilled and practiced hand that can recognize problems simply by feeling and touching the affected parts of the patient’s body. ‘Treatment’ in this

 D.  Zahavi, Empathy, embodiment and interpersonal understanding: From Lipps to Schutz, in Inquiry, 53/3, 2010, p. 291. 59  M.  Englander, Empathy Training from a Phenomenological Perspective, in Journal of Phenomenological Psychology 45, 2014, p. 12. 60  S. Gallagher, D. Zahavi, The Phenomenological Mind, Routledge, New York 2012, p. 203. 61  See M. Englander, Empathy in a Social Psychiatry, in M. Englander (ed.). Phenomenology and the Social Context of Psychiatry Social Relations, Psychopathology, and Husserl’s Philosophy, Bloomsbury, Indiana 2018, pp. 49–64. 62  See S.  Wharne, Empathy in phenomenological research: Employing Edith Stein’s account of empathy as a practical and ethical guide, in Methods in Psychology Volume 5, December 2021, 100053, doi: https://doi.org/10.1016/j.metip.2021.100053 63  E. Stein, On the problem of empathy, ICS Publications, Washington 1989 p. 75. 58

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sense is something which goes far beyond mere progress in modern techniques”.64 Curing requires a shared corporeal existence among those who are in need of curing, and those who provide the cures. This shared corporeal existence is possible through the mediation of living bodies and the gestural body: the expressions of the face, the movement of the eyes, the tone of voice and the movements of the body. Gestures and touch have a profound impact in the clinical encounter, especially when the person may suffer from neurological conditions which irreversibly affect her identity. An example of this is offered by the experience of health workers with Alzheimer’s patients. Alzheimer’s disease – and other forms of dementia – turns the person’s identity upside down impacting the cognitive and reflective capacities, often considered as the seat the person: To be a person in the full sense of the word is, in Western cultures, decisively bound up with the intactness of functions such as reflection, rationality, memory, and with the autonomy that is based on them. Impairments resulting from a process of dementia therefore come into conflict with the central values of a culture centered on cognition and on the individual. Dementia becomes a threat to the person as such and is more stigmatized than most other mental illnesses. (…) However, this identification of our selfhood with cognition, rationality, and memory is based on a dualistic conception of personhood, in which the body serves merely as a vehicle for the mind – or the brain. According to this view, the cortex and the act of thinking become the site of the person, while the rest of the body, along with our embodied feelings, lacks cognitive awareness and rational control and so leads nothing more than a shadow existence. Such a view (…) neglects what is constitutive of human personhood, namely its sociality, which already manifests itself in the primary pre- reflective intersubjectivity (…) and which is crucially based on intercorporeality and interaffectivity65

In recounting his experience with Alzheimer patients, a physiotherapist says: I was working with Mrs. D on her walking and she was resisting the physio. I was trying to explain to her how important it was to get her legs moving but I wasn’t getting anywhere with her. As I took a moment to myself to figure out what I could do to connect with her it suddenly became THE moment we actually connected. Our eyes met and she smiled. I immediately smiled too and several moments passed like that of us just smiling at each other. We then proceeded with the physio. It was like she needed me to show her that I was there for her and I did.66

In the silent exchange of expressive gesture, the patient and her physiotherapist were able to communicate with each other, making a meaningful connection: “The significance of their connection derives not from semantic content but rather from the meaning their bodies directly convey. This is consistent with Merleau-Ponty’s argument that communication dwells in corporeality or, more specifically, the body’s capability of gesture”.67 Of course, organizational context and culture are factors that influence practitioners’ ability to provide quality care; but embodied  H. G. Gadamer, The Enigma of Health: The Art of Healing in a Scientific Age, p. 99.  T. Fuchs, In defence of the human being, p. 196. 66  P.  C. Kontos, G.  Naglie, Tacit knowledge of caring and embodied selfhood, in Sociology of Health & Illness, 2009, 31,5, doi: 10.1111/j.1467-9566.2009.01158.x, p. 696. 67  P. C. Kontos, G. Naglie, Tacit knowledge of caring and embodied selfhood, p. 697. 64 65

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interactions among patients and nurses are good examples of how the embodied presence is a precious – and in some case an essential – resource to convey a meaning into the therapeutic journey. In this shared corporeal existence and space there is another element which cannot be replaced by telemedicine, digital medicine and apps: the touch. Touching is a form of non-visual perception that plays an important role in our emotional, cognitive and bodily development. It possesses multisensory qualities and is mainly related to bodily awareness. Touching is different from proprioception even if it involves the latter.68 Touching is “a normal practice during care of older adults and it relates to physical assisting as well as to emotional care. (…). Affective touch has been mentioned as a recommended therapeutic communication technique, and comfort touch has been identified as a non-verbal communication strategy in assisting patients who have Alzheimer’s”.69 Touching is a compound resource to let the presence be comforting. Perhaps the case of Alzheimer’s disease illuminates the tight relationship between curing and embodiment. There is no solicitude (Sorge) without an embodied encounter, without a living presence, without a face that meets my gaze: “The face speaks. It talks, and it is the essence of the person that makes this possible and kick-­starts any conversation”.70 This is why curing cannot exclude the embodied encounter and why any attempt to replace this encounter with remote working devices or apps cannot fulfill the very last task of medicine: not merely fixing something broken within the person, but rather an embodied thoughtful enterprise which makes space for the other with an open disposition.

References Aristotle. (1972). De Partibus animalium. Oxford University Press. Armstrong, D. M. (1962). Bodily sensations. Routledge & Kegan Paul. Bizzari, V. (2022). Absent bodies: Psychotherapeutic challenges during COVID-19., Psychopathology. https://doi.org/10.1159/000524711 Blakemore, C. (1988). The mind machine. BBC Publications.

 The literature on the theme of touching is extremely broad. For a general view I refer the reader to D. M. Armstrong, Bodily Sensations, Routledge & Kegan Paul, 1962, London; J. J. Gibson, The Senses Considered as Perceptual Systems, Houghton Mifflin Company, Boston 1966; A. D. Craig, How do you feel? Interoception: the sense of the physiological condition of the body, in Nature Reviews Neuroscience, 202, 3(8), pp.  655–666; M.  Ratcliffe, Touch and Situatedness, in International Journal of Philosophical Studies, 2008, 16(3), pp. 299–322; M. Ratcliffe, What is Touch?, in Australasian Journal of Philosophy, 2012, 90(3), pp. 413–432. 69  K. Mononen, Embodied care: affective touch as a facilitating resource for interaction between caregivers and residents in a care home for older adults, in Linguistics Vanguard, 2019, doi: https://doi.org/10.1515/lingvan-2018-0036, p. 2. 70  E. Levinas, Ethics and Infinity, Duquesne University Press, Pittsburgh, 1985, p. 87. 68

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Boly, M., Massimini, M., Tsuchiya, N., Postle, B. R., Koch, C., & Tononi, G. (2017). Are the neural correlates of consciousness in the front or in the back of the cerebral cortex? Clinical and neuroimaging evidence. The Journal of Neuroscience, 37(40), 9603–9613. Brencio, F. (2022). From words to worlds. How metaphors and language shape mental health. In S. Wuppuluri & A. C. Grayling (Eds.), Metaphors and analogies in sciences and humanities: words and worlds (pp. 233–250). Springer. Brencio, F. (2023). (Dis)embodied encounters. Deciphering intersubjectivity in the context of drugs’ prescription. In P. A. Gargiulo, & H. L. Mesones Arroyo (Eds.), Psychiatry and neuroscience update. From translational research to drug addictions and psychoses (Vol. V). Springer. Chalmers, D. (1995). Facing up to the problem of consciousness. Journal of Consciousness Studies, 2(3), 200–219. Colombetti, G. (2014). The feeling body. Affective science meets the enactive mind. The MIT Press. Coravos, A., Goldsack, J. C., Karlin, D. R., Nebeker, C., Perakslis, E., Zimmerman, N., & Erb, M.  K. (2019). Digital medicine: A primer on measurement. Digital Biomarkers, 3, 31–71. https://doi.org/10.1159/000500413 Craig, A. D. (2002). How do you feel? Interoception: The sense of the physiological condition of the body. Nature Reviews Neuroscience, 3(8), 655–666. Damasio, A. (1994). Descartes’ error: Emotion, reason, and the human brain. Putnam Publishing, reprinted in Penguin. Damasio, A. (1999). The feeling of what happens: Body and emotion in the making of consciousness. Harcourt Press. Dennett, D. (1991). Consciousness explained. Little & Company. Englander, M. (2014). Empathy training from a phenomenological perspective. Journal of Phenomenological Psychology, 45, 5–26. Englander, M. (2018). Empathy in a social psychiatry. In M. Englander (Ed.), Phenomenology and the social context of psychiatry social relations, psychopathology, and Husserl’s philosophy (pp. 49–64). Indiana. Feinberg, T. E. (2001). Why the mind is not a radically emergent feature of the brain. Journal of Consciousness Study, 8(9/10), 123–146. Ferrarello, S. (Ed.). (2021). Phenomenology of bioethics: Technoethics and lived-experience. Springer. Finger, S. (2000). Minds behind the brain. A history of the pioneers and their discoveries. Oxford University Press. Fuchs, T. (2002). The challenge of neuroscience: Psychiatry and phenomenology today. Psychopathology, 35, 319–326. Fuchs, T. (2014). Brain mythologies. Jaspers’ critique of reductionism from a current perspective. In T.  Fuchs, T.  Breyer, & C.  Mundt (Eds.), Karl Jaspers’ philosophy and psychopathology. Springer. https://doi.org/10.1007/978-­1-­4614-­8878-­1_5 Fuchs, T. (2018). Ecology of the brain. Oxford University Press. Fuchs, T. (2021). In defence of the human being. Foundational Questions of an embodied anthropology. Oxford University Press. Fuchs, T., & De Jaegher, H. (2010). Understanding intersubjectivity: Enactive and embodied. In T. Fuchs, H. C. Sattel, & P. Henningsen (Eds.), The embodied self: Dimensions, coherence and disorders. Schattauer. Gadamer, H.  G. (2018). The enigma of health: The art of healing in a scientific age (Kindle Edition). Wiley. Gallagher, S., & Zahavi, D. (2012). The phenomenological mind. Routledge. Gibson, J. J. (1966). The senses considered as perceptual systems. Houghton Mifflin Company. Heidegger, M. (1977). The question concerning technology and other essays. Harper & Row. Husserl, E. (1989). Ideas pertaining to a pure phenomenology and to a phenomenological philosophy. Second book (Studies in the phenomenology of constitution). Kluwer Academic Publishers.

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Jaspers, K. (1997). General psychopathology (J.  Hoenig, & M.  W. Hamilton, Trans.). Johns Hopkins University Press. Jonas, H. (1985). The imperative of responsibility: The search of an ethics for the technological age. University of Chicago Press. Koch, C., Massimini, M., Boly, M., & Tononi, G. (2016). Neural correlates of consciousness: Progress and problems. Nature Neuroscience, 17, 307–321. Kontos, P. C., & Naglie, G. (2009). Tacit knowledge of caring and embodied selfhood. Sociology of Health & Illness, 31(5), 688–704. https://doi.org/10.1111/j.1467-­9566.2009.01158.x Levinas, E. (1985). Ethics and infinity. Duquesne University Press. Merleau-Ponty, M. (1981). Phenomenology of perception. Routledge. Metzinger, T. (1999). Subjekt und Selbstmodell. Die Perspektivität phänomenalen Bewußtseins vor dem Hintergrund einer naturalistischen Theorie mentaler Repräsentation (2nd ed.). Mentis. Mononen, K. (2019). Embodied care: Affective touch as a facilitating resource for interaction between caregivers and residents in a care home for older adults. Linguistics Vanguard, 1–15. https://doi.org/10.1515/lingvan-­2018-­0036 Noe, A. (2010). Out of our heads, why you are not your brain, and other lessons from the biology of consciousness. Hill and Wang. Northoff, G. (2001). “Brain-Paradox” and “Embeddment”  – Do we need a “Philosophy of the Brain”? Brain and Mind, 2, 195–211. Penfield, W. (1975). The mystery of the mind: A critical study of consciousness and the human brain. Princeton University Press. Plessner, H. (2019). Levels of organic life and the human: An introduction to philosophical anthropology. Fordham University Press. Purves, D. (2018). Neuroscience (6th ed.). Oxford University Press. Ratcliffe, M. (2008). Touch and situatedness. International Journal of Philosophical Studies, 16(3), 299–322. Ratcliffe, M. (2012). What is touch? Australasian Journal of Philosophy, 90(3), 413–432. Sacks, O. (2010). The mind’s eyes. Knopf Publ. Schoonover, C. (2010). Portraits of the mind: Visualizing the brain from antiquity to the 21st century. Abrams. Shookman, E. (Ed.). (1993). The faces of physiognomy interdisciplinary approaches to Johann Caspar Lavater. Camden House. Sperry, R. (1965). Mind, brain and humanist values. In J. R. Platt (Ed.), New views of the nature of man (pp. 2–6). University of Chicago Press. https://doi.org/10.1080/00963402.1966.11454956 Sperry, R. (1994). Holding course amid shifting paradigms. In W. Harman & J. Clark (Eds.), A reexamination of the meta physical foundations of modern science. Causality issues in contemporary science (pp. 99–124). Institute of Noetic Science Press. Staum, M. S. (2003). Labeling people: French scholars on society, race and empire, 1815–1848. McGill-Queen’s University Press. Stein, E. (1989). On the problem of empathy. ICS Publications. Tsakiris, M., & Preester, H. D. (2018). The interoceptive mind: From homeostasis to awareness. Oxford University Press. Varela, F., Thompson, E., & Rosch, E. (1991). The embodied mind. The MIT Press. Voineda, T. J. (1998). Sperry’s concept of mind as an emergent property of brain function and its implications for the future of humankind. Neuropsychologia, 36(10), 1077–1082. Von Gebsattel, V. E. (1995). The meaning of medical practice. Theoretical Medicine, 16, 59–72. Wallis Budge, E. A. (1985). The Egyptian book of the dead. Dover Publications. Wharne, S. (2021). Empathy in phenomenological research: Employing Edith Stein’s account of empathy as a practical and ethical guide. Methods in Psychology, 5, 100053. https://doi. org/10.1016/j.metip.2021.100053 Zahavi, D. (2010). Empathy, embodiment and interpersonal understanding: From Lipps to Schutz. Inquiry, 53(3), 285–306.

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Websites https://apps.who.int/gb/ebwha/pdf_files/WHA71/A71_20-­en.pdf https://www.heise.de/tp/features/Der-­Mensch-­als-­Industriepalast-­3384323.html

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Chapter 12

Aiming at Well-Being with Brain Implants: Any Risk of Implanting Unprecedented Vulnerabilities? Tomislav Furlanis and Frederic Gilbert

12.1 Introduction: When Well-Being Leads to Vulnerabilities One of the main medical reasons why Brain-Computer Interfaces (BCI) are being therapeutically used in humans is to alleviate disabling symptoms, thus targeting an increase in quality of life and well-being for users. Aside from critical questions and issues raised by ableism (Stramondo, 2019), an unexplored problem with inserting and implementing BCIs in one’s body, hence human-BCI existence, is the potential rejection of the technology by the user even when the system is correctly designed to facilitate a state of well-being and is operating effectively (Gilbert et al., 2019a, b). Recent hypotheses, explaining the potential BCI-induced rejection effects on users, are directly imported from clinical data compiled from reports and studies of open-loop, historically longer-standing, technologies such as deep brain stimulation (DBS). Early French studies have demonstrated that even with alleviation of symptoms, some patients implanted with DBS were reporting psychosocial maladaptation (Houetto et al., 2002; Agid et al., 2006; Schupbach et al., 2006), popularized under the verbatims of “I don’t recognize myself since the intervention”. These patients’ narratives were often echoed by family members (leading to separations or divorces). This phenomenology has been named the Burden of Normality (Gilbert, 2012; Baertschi et al., 2019); describing the phenomena where patients may experience psychosocial vulnerabilities after surgery despite improvement of symptoms that were targeted to enhance well-being. If we understand vulnerability “as a T. Furlanis Independent Researcher, Rijeka, Croatia e-mail: [email protected] F. Gilbert (*) Philosophy Program, University of Tasmania, Hobart, Australia e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 E. Boublil, S. Ferrarello (eds.), The Vulnerability of the Human World, Philosophy and Medicine 148, https://doi.org/10.1007/978-3-031-41824-2_12

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multifaceted concept depicting our relational and embodied nature (ontological vulnerability) and our necessarily situated and unpredictable existence (situational vulnerabilities)” (Boublil, 2018), then it is essential to examine how targeting well-­being with neural devices may induce potential vulnerabilities. An increasing body of research has framed these DBS postoperative vulnerabilities as adverse effects impacting the notion of personality, identity, autonomy, agency, authenticity, and the self (Gilbert et al., 2021a, b; Pugh et al., 2021; Thomson et al., 2021; Mosley et al., 2021; Kubu et al., 2021; Erler, 2021; Zawadzki, 2021; Bluhm & Cabrera, 2021; Gaillard, 2021; Snoek et al., 2021; Zuk & Lazaro-Munoz, 2021; Gilbert et al., 2017; Gilbert, 2013, 2015a; Pugh, 2020). However, it is unclear how DBS studies translate to BCI research, despite growing conceptual works on these notions (Glannon, 2021; Burwell et al., 2017; Friedrich et al., 2021; Sample et al., 2019; Haselager et al., 2021; Steinert et al., 2019; Kogel et al., 2020; Schonau et al., 2021; Kostick et al., 2021; Gilbert, 2015b; Gilbert et al., 2023). The BCI literature reports that neural device rejection may induce radical distress, feelings of loss of control, and a rupture of patient identity, which decrease one’s well-being (Gilbert et  al., 2019a, b). In some cases, the implanted individual may request removal of the device (“I want it out of my head1”) (Gilbert et  al., 2019a, b; Kenneally, 2021; Gilbert, 2013) despite BCI successfully fulfilling the targeted well-being of the implantee (i.e. executing its therapeutic role properly), like DBS. In trying to interpret the possible causes for this rejection, as such, potential induced vulnerabilities via the neural devices, we start from the premise that in many such cases the reason for such a rejection does not lie in the neurological interaction between the brain and the device but rather in the psychological dimension – the inability of the user to adequately cope with her new post-implementation state.2 To understand this ethical issue we have to look at the ethics of lived experience (Ferrarello & Zapien, 2019). To investigate a possible solution to this problem,3 we propose to understand the implementation of a BCI system in one’s body through the capability approach. This will allow us to interpret the BCI implementation protocol as a health-based procedure that achieves personal well-being. Consequently, this position will empower us to inspect the possible gaps or lacks in  Examples vary between whether a user feels the neural device as an alien entity and a patient experiencing a need to remove it. Patient 04, in Gilbert et  al., 2017, declared the following in response to the interviewer’s question: 1

Interviewer 1: “The implant, do you feel that it is part of you?” Patient 04: “ No!” Interviewer 1: “You feel that it is alien?” Patient 04: “I hate it. I wish I could pull it out!” 2  These psychological reactions might be more common, but not always, related to interactive BCI, such as advisory neurotechnologies. 3  We are fully aware that this current issue (psychological rejection) is complex, and might illustrate a lack in qualitative data collected during experimental trials which insufficiently inform current neural devices regulatory approval and usage in humans (Stevens & Gilbert, 2020, 2022; Viana et al., 2017) as well, the environment leading to how informed consent are contracted (Pham & Gilbert, 2019; Gilbert et al., 2019b; Gilbert et al., 2013).

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the pre and post-operative protocols which might be responsible for the state of psychological rejection.

12.2 The Capability Approach: General Tenets The capability approach is a crucial approach to well-being assessments. First introduced by Amartya Sen in “Equality of what” (Sen, 1982) the approach has generated many fruitful discussions in philosophy and ethics, in particular via Nussbaum (2013) and Robeyns (2017). The capability approach is a theoretical framework that entails two core normative claims (Robeyns & Byskov, 2021): (1) the claim that the freedom to achieve well-being is of primary moral importance, (2) freedom to achieve well-being is to be understood in terms of people’s capabilities, that is, their real opportunities to do and be what they have reason to value. For instance, a capability to X requires (1) having the real possibility for X which (2) depends on the person’s powers and (3) is not prevented by external circumstances (Nussbaum, 2013). A core question to answer is how capable (really free) are we? To answer this question, the capability approach relies on its ability to conceptualize the value of one’s potential state of being  – the activities one is capable of accomplishing and the kind of being one is capable of becoming. The abilities by which we achieve potential end states are called capabilities and the end-state which we achieve is called a functioning.4 To exemplify, a quadriplegic individual can have the capability to walk with the support of a BCI which opens up many possible functionings. For instance, through the capability of BCI-induced walking the individual could become a postman, a courier, or even a Paralympic champion - the end states are many, even with a single capability. Correspondingly, we understand a capability as a potential to accomplish a functioning while a functioning refers to what people are achieving in terms of beings and doings. Alternatively, the functioning results from the actualization of real capacities.5 Also, as is alluded to in the question: “How capable, or really free, are we?”, every capability is inherently related to the “real or actual freedom” every individual possesses to achieve one’s possible functionings. In doing so, the capability approach emphasizes the freedom to choose a new state of well-being even if one is already content with the available choices and opportunities. Consequently, when an individual thinks of herself in the “capability” manner she can evaluate her future, possible, self – even when such a potentiality transcends the opportunities which stand at her current disposal. For instance, “How can I utilize these resources  The notion of ‘functionings’ is a morally neutral category. Functionings can be univocally good (e.g., being in good health) or univocally bad (e.g., being raped). (Robeyns, 2017). What people can do (capabilities), as opposed to what they do (functionings), should be the focus of well-being evaluations and government policy (Robeyns, 2017) 5  A stentrobe may provide you with a capability for writing text, but not if it is imposed on you. 4

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to become something else (or more)? What is the range of states I am able to achieve?” This point is vital to take into consideration for our case. Additionally, even when the decision to accept a capability by which to obtain a functioning is made, not all individuals will have the same rate of success with the same capabilities since every capability is generated by inputs or resources, and these are influenced by several conversion factors “that filter, amplify, or modify the inputs’ characteristics” (Haenssgen & Ariana, 2018). The reason for this is that conversion factors determine the rate of conversion – “the degree to which a person can transform a resource into a functioning” (Robeyns & Byskov, 2021) and are generally accepted to include personal, social, environmental factors6 (Robeyns, 2017) and most recently – technological factors. Technology is an interesting conversion factor, since it is perceived to be both an input (a resource) which we use to generate a capability, but also a factor that converts, or transforms, other inputs into capabilities. That technology is an input which generates or enables capabilities has been noted already by Sen who argued that, for instance, the usability of the mobile phone (as a generative resource) stands subjected to other conversion factors like for instance the knowledge and experience one has of contemporary technology (Sen, 2010). However, technology also serves as a conversion factor, as it is capable of transforming the characteristics of other inputs. Technological tools, objects, and artifacts are then, from the viewpoint of the capability approach, not only used as entities by which one attains desired capabilities. They also represent a distinct type of conversion factor that impacts the generative process from the input to a capability. As the authors explain: …this modification of other inputs is what sets technical objects apart from other ‘input objects’ within the CA: technical objects do not only have a ‘generative’ dimension as bearer of characteristics like other objects, but they also have a ‘transformative’ dimension that influences the characteristics of other objects. In this transformative dimension, technical objects fulfill functions that are otherwise the domain of conversion factors, namely moderating the translation of other inputs into valued capabilities. (Haenssgen & Ariana 2018, 6)

Importantly, due to its dual nature of being both an input and a transformer (or a converter) technology – in its ability to enable a capability – is simultaneously both influencing and is being influenced by other conversion factors. This entails that technology is not only shaping the environment, our embodiment, and our society but it is also being shaped according to the structure of our embodiment, our built environments, and our societies. The relation is bidirectional.  There are various conversion factors. For instance, environmental conversion factors, as the name says, belong to the environment which includes the physical and built environments a person lives in. The social conversion factors stem from the society one lives in, from the culture one is influenced by. Here then, the influence on the successful generation of a capability is directly influenced by the social norms, practices, relations, and hierarchies one is immersed in as part of one’s culture. Importantly, the differentiation of conversion factors to these sets should not be interpreted as a final, definite, list as they could be further delineated into more finely grained divisions or be added with new categories (Robeyns & Byskov, 2021). 6

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12.3 The Capability Approach and BCI Related Well-Being Now that we have taken a look at the basic elements of the capability approach, we can ask the question: why is the CA approach a potentially beneficial conceptual tool for the evaluation of BCI-related well-being? There are, at least, two reasons we wish to illustrate in this work. First, the capability approach helps interpret the entire range of the BCI procedure as a coherently structured process that leads to the desired state of well-being. Second, the capability approach allows factoring in the particular aspect of the BCI implementation as a procedure that produces a “transformative experience” in the patient. Following, when these two are combined it allows us, first, to interpret why the BCI procedure as a capability forming process enables the patient to achieve a state of psychological (and physiological) well-being. Second, it allows us to point out what are the possible obstacles within this process because of which some patients are unable to achieve a state of psychological well-being after the implementation of the device. Precisely, we can ask why the patient is not achieving the required, BCI-related, capability and/or what is stopping her from using the capability to its full extent to achieve a state of psychological well-being (e.g. patients ignoring and not trusting their devices “Patient 04: No I wasn’t trusting it [the device] I just ignore it anyways” (Gilbert et al., 2018)). In doing so, we are narrowing down the possible gaps in the BCI procedure which, if corrected, would improve the patient’s chances to achieve an optimal state of well-being after the implementation. To ask this question, however, we first have to take a look at the crucial aspect of BCI-induced procedures – the transformative self-experience.

12.4 Transformative Experience What are transformative experiences? As Paul explains, a personally transformative experience “changes you in some deep and personally fundamental way, for example, by changing your core personal preferences or by changing the way you understand your desires and the kind of person you take yourself to be” (Paul, 2015, 761), that is “revising how you experience yourself” (Paul, 2016, 16), “your point of view”, “what it is like for you to be you” (Paul, 2016, 16). Crucially, the main issue of transformative experiences lies not so much in the transformation of the individual’s self-experience, but rather in the inability of the transformed to know what kind of transformation she will experience, what is the new self she will transform into. This point reflects starkly in BCI implementations where the post-­implementation self-experience may be so vastly different from the ordinary self-experience, that there is simply little to no comparison one could use to define the upcoming transformation to the subject. Correspondingly, even if we wanted to illustrate the

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experience and prepare the patient for it – we cannot – since we are unable to grasp the transformed experience one achieves with the device after the implementation precisely because it is always partly self-constituted. Of course, this posits a problem for any kind of healthcare intervention that cannot factor in the importance and impact of this personal transformation. However, if we apply the capability approach to this problem, then we become released from the need to define the experience as an element which one has to describe beforehand since we interpret the BCI-induced transformative experience not as an input or a resource (which we define in advance) but rather as the outcome of conversion – from input to functioning through a capability. Of course, since an input generates a capability that enables the subject to achieve a specific functioning, then the question we want to ask is – what capability do we require to achieve a functioning which does not only factor in the transformed experience, but also achieves psychological well-being? And consequently, what resources besides the BCI device do we require to generate this capability, through which the subject achieves her well-being? To answer this question, we first aim to describe the state of well-being (i.e. our wanted functioning) we aim to achieve after the implementation. Once we do so, it will become easier to accurately interpret the capability through which the patient realizes this functioning. Accordingly, we are aware that the end state we search for ought to be one in which the patient and the BCI device accomplish a form of coherent cooperation. Additionally, and from the personal perspective of the patient, the end state we aim for will have to accomplish a meaningful and successful integration of the subject’s self within the novel subject-BCI relationship. In other words, the end state we aim to achieve has to establish a state of cooperation and identity integration for the human subject. What kind of functioning would then correspond to the demands of a coherent, integrative self-understanding which accommodates the impact of the BCI-induced transformative experience? And what kind of capability produces this functioning? We propose that a good starting interpretation includes the functioning of psychological coping and the capability of patient empowerment.

12.5 Empowerment and Coping: Achieving the Desired State of Well-Being Psychological coping is an established psychological concept that relates to a set of cognitive and behavioral efforts by which humans resolve stressful and taxing internal or external demands (Lazarus & Folkman, 1984, 141). Accordingly, coping mechanisms are recognized as a key factor “influencing long-term mental and physical health, well-being, and development in the face of adversity” (Skinner & Zimmer Gembeck, 2016).

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From the patient’s, disease-impacted, perspective, psychological coping usually pertains to a state in which patients, impacted by the sudden disease, become capable of accepting their newfound experience through the successful integration of personal factors into a coherent whole (Folkman et al., 1986; Petticrew et al., 2002). Depending on the impact and changes to their health state after the medical procedure psychological coping can mean to include several different, albeit similar, states. These can include a state of acceptance, positive reframing, successful meaning-­ making, and identity integration. All of these patients make “sense of their illness in the context of their lives, maintained hope, and reduced fears” (Agner & Braun, 2018, 2058). Consequently, a successful state of psychological coping includes a release from the psychological struggle which results from the friction in one’s self-­ understanding occurring after the transition to the new existential state. This makes psychological coping a fitting description of the end-state the BCI patient ought to achieve since it seems that the patient’s self-experience is impacted in all of the mentioned dimensions. For instance, the patient has to first accept that her well-being is now constituted by the functioning of the BCI device and is no longer dependent solely on her own body. This fact of dependence might, for some patients, pose a serious psychological obstacle. Second, the patient has to positively reframe and/or make meaning out of her new existence according to her personal beliefs, worldview, ideology, or religion. In other words, she has to find personal worth and value, personal meaning in her new BCI empowered way of life, the absence of which might directly reinforce a negative self attitude and a desire to revert to the old, non-BCI, state  – thus rejection. Finally, and perhaps most importantly, the end state we aim to achieve has to accomplish successful identity integration. As have previously warned (Furlanis & Gilbert, 2023; Miletic & Gilbert, 2020) one of the biggest threats to personal wellbeing in BCI cases, includes the harm to the sense of personal self, to one’s very own self-identity, which can be impacted by the BCI device to the point of fracture. Here, the human subject perceives the device as an “alien” influence, an intruder within one’s own body or mind, and as such cannot integrate the BCI system as part of one’s identity. Consequently, one may opt for quick and efficient removal of the device. Of course, to mitigate these negative outcomes and achieve the state of psychological coping, as the desired BCI-related functioning, we have to do so through a capability. This makes us question what is the capability by which a BCI patient achieves psychological coping? The answer to this question is central, as by knowing the capability we become capable of positing the range of resources (i.e. inputs) and conversion factors that generate this capability. Consequently, we also become capable of narrowing down the range of factors that could be responsible for the unsuccessful achievement of our functioning  – the result of which is a post-­ procedural BCI rejection. Here, then, we propose that the capability which achieves the functioning of psychological coping in BCI-related cases is the capability of “BCI patient empowerment”.

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Patient empowerment is usually described as both an outcome and a process (Cerezo et al., 2016) and in our case, we utilize the understanding of patient empowerment as a process. There are numerous definitions of patient empowerment, but most of them focus on empowering the patient’s ability to improve their well-being, quality of life, and health state (Acuña Mora et  al., 2022) through self-governed direction.7 Thus, when we think of patient empowerment we focus on the ability of patients to manifest activities or behaviors by which they take an active role in their well-being. That is, by self-managing their condition through meaningful, informed, and realistic decisions. Thus, we focus on the aspect of patient empowerment as the self-empowering process by which “patients [...] manage their own condition and feel like they have got the ability and are given confidence to be able to manage their condition” (Bravo et  al., 2015). Additionally, in the process of being self-empowered patients also uncover a new, prior unknown, potential by which they engage, and resolve, their disease-related difficulties of disease which can be described as the “individual’s discovery (and development) of their inborn capacity to control and take responsibility for their lives” (Kliim Petersen et al., 2008). Consequently, patient empowerment withholds not only a self-revelatory but also a self-transformative dimension as it unfolds from within the patient’s inner, personal, point of view. (Falcão-Reis & Correia, 2010). Finally, and relating to the functioning that the BCI-related capability ought to accomplish, patient empowerment is often viewed to achieve the results of coping skills. (Cerezo et al., 2016). Precisely, patient empowerment develops specific coping strategies which the patient uses to regain a sense of control over her health condition (Bulsara et  al., 2006), to establish an independent self-management (Fotoukian et al., 2014) or to achieve new life perspectives by “reconceptualizing and reinterpreting their disease” (Hagiwara & Futawatari, 2011). Accordingly, these aspects make patient empowerment a rather suitable candidate for the BCI-related capability. But, how do we generate this capability? That is, what resources or inputs are required to enable the capability of patient empowerment which empowers the BCI patient to achieve psychological coping after the implementation? Here we first have to recall that, according to the CA approach, to generate or enable a specific capability we have to utilize corresponding resources or, more precisely, the characteristics of those resources. For instance, the capability of being alive is partly generated by food or more precisely the nutrients which are inherent in various types of (healthy) food (Sen, 1982). Once the capability is generated, it allows the subject to achieve various endstates which this capability opens up according to one’s free choice and corresponding value.  To name a few: “Patients are empowered when they have knowledge, skills, attitudes, and self-­ awareness necessary to influence their behavior and that of others in order to improve the quality of their lives” (Funnell et al., 1991).“Patient empowerment is a process designed to facilitate self-­ directed behavior change...The empowerment approach involves facilitating and supporting patients to reflect on their experience of living with diabetes. ” (Anderson & Funnell, 2010) 7

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Thus, to achieve the end state of psychological well-being in BCI-related cases the resources we utilize have to be capable of generating the specific BCI-related capability. Since only after generating the BCI-related patient empowerment capability can the patient utilize this capability to empower herself and achieve a successful state of psychological coping post-implementation. Consequently, the kinds of resources we seek are precisely those that enable the patient to become self-­empowered to achieve a state of psychological coping after the BCI procedure. Let us take a closer look.

12.6 The Missing Resources As we have noted in the introduction of this piece, and for the sake of this discussion, we evade the position that the cause of the negative outcome to psychological coping is due to a neurological cause - for instance due to some still unknown or undetected interaction between the brain and the interface (Gilbert et al., 2021a).8 This means that the BCI device and its implementation and functioning are taken out of this capability-based evaluation, as we take them to be functioning properly. We propose that this leaves us with the following resource candidates: • A healthy pre-procedural (psychological) state. • A healthcare service that prepares the patient for the procedure and supports her post-operational state (Therapy, Counseling, Motivation) Concerning the first resource, it seems reasonable to posit that the patient will require a competent state of mind to enter the BCI implementation and evade postprocedural harms to one’s well-being. This type of resource then seems to be composed of the same kind of characteristics as those which can be expected to generate patient empowerment in ordinary, non-BCI cases. That is, there should be no important difference between a healthy psyche that prepares for a BCI implementation and a healthy psyche that prepares for a non-BCI procedure. This leaves us to search the required characteristics for BCI-related patient empowerment in the second input, that of healthcare service. Here we have to ask what kind of resources, or more precisely what kind of resource characteristics within the set of usable healthcare services correspond to this BCI-induced demand? In doing so, we have to take notice that BCI devices, understood through the capability approach, are also transformers that convert the patient’s experience to a transformative experience. This entails that the capability we aim to generate ought to enable the patient to engage the demand of the

 This does not mean that in some circumstances, the neural device may be directly caused psychological disruption due to stimulation (Pugh et al., 2021; Thomson et al., 2021; Mosley et al., 2021; Kubu et al., 2021; Erler, 2021; Zawadzki, 2021; Bluhm & Cabrera, 2021; Gaillard, 2021; Snoek et al., 2021; Zuk & Lazaro-Munoz, 2021; Gilbert et al., 2021b; Bluhm et al., 2020). 8

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experiential transformation which includes the need for self-interpretation or self-­authoring after the implementation. Crucially, due to its transformative aspect, the post-procedural endstate cannot be described to the patient in advance from an external point of view. Instead, the patient has to experience the end state on her own, and cope with the experience once she experiences it. This puts pressure on the subject as she is now put into a condition where she has to both interpret her newly found state in a manner that safeguards her identity and also orient herself towards the BCI device in a manner that allows her to accept the device’s assistance in the realization of her well-being. Consequently, the use of traditional, functional-minded, healthcare services might not be efficient for the generation of a BCI related patient empowerment since a functional, “traditional”, the approach does not usually advance beyond a description of a set of functional preconditions that the subject has to accomplish to achieve psychological well-being. This entails, as Mahr notes, that the traditional model is “doctor-centered rather than patient-centered” as the “covert narrative embedded in the traditional model centers on the doctor and whether the doctor is being understood.” (Mahr, 2015, 503). In the understanding of CA, then, the use of Healthcare services that are of a traditional characteristic, might not be adequate for the generation of BCI-related patient empowerment, since they withhold a different set of ingredients. In essence, they do not focus on the patient, but on the doctor, as they suppose that it is the provider who knows (and consequently withholds the power) to advise the patient about her incoming internal mental state. However, this is not the case in BCI-­ induced experiences since the relation between the patient and the BCI device cannot be sufficiently grasped in advance precisely due to the reason that it is being constituted by the patient herself as she undergoes a self-transformation after the implementation and there are no means to grasp the experience beforehand. Importantly, this inability to know what one is going to self-transform after the process, also directly diminishes the ability to create an informed rational decision on the question of whether one should proceed with the transformation or not. As Paul illustrates with cases of deaf children and hearing implants or even the fantastic example of becoming a vampire there simply is no possibility for the subject to create an informed, rational, decision by “assigning subjective values to these outcomes and then modeling your preferences on this basis”. (Paul, 2016, 83). This means to say that since one cannot know what kind of a self-experience one will encounter in this new state of being one cannot make a rational decision that is based on assessing these states as more or less (rationally) preferable. However, as Paul famously argues, there is a way to form a rational choice in these matters but it does not include a choice based on knowing what the transformative experience “will be like”, or what will you transform into exactly. Instead, the rational choice is based on knowing the answer to the question, do you wish to “discover who you’ll become”? (Paul, 2016, 119). Consequently, when we implement this notion within our capability-based interpretation then it becomes clear how the rational decision for the BCI procedure is based on a set of resources that enable the patient to venture forward into the

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“unknown discovery of the new self” precisely because they equip the patient with the necessary resources which allow her to discover her new self in a manner which is empowering, self-informative and rational. What we search for then, is a kind of resource that is more internally rather than externally oriented, a type of healthcare service that can be used as a resource to generate self-interpretation by the patient, internally, rather than a description-based resource which the patient accesses externally. In essence, we require a resource that is person-centered, used by the patient within herself, as it is precisely the patient who self-constitutes her newly found state as a state of psychological well-­being. All of these demands make the narrative approach to medical care a promising input for the generation of BCI-related patient empowerment.

12.7 Narrative Based Healthcare Services: The Enabling Factor Narrative approaches have gained more attention in recent years (Leuenberger, 2021, 2022; Gilbert & Viana, 2018). However, why should we include the narrative approach to healthcare services as a vital resource for the generation of the BCI-­ related patient empowerment capability? There are several reasons for this proposal. First, we have to note that when we speak of a narrative approach to medical practice, we do not speak of a new or radical shift in a medical approach to patients. Instead, we speak of a reinterpretation of an age-old medical principle which puts the person and not her descriptive state to the forefront, as Hippocrates noted ‘the sort of disease a person has is much less important than the sort of person that has the disease’. (Mahr, 2015, 504). Here we remember how Rita Charon, the pioneer of narrative medicine noted that “one of the primary ways that we as humans encounter ourselves and each other and deal with illness and suffering is through story or narrative. As we frame the experience as narrative, we imbue it with meaning.” (Charon, 2008, 7). This form of an encounter is shown in everyday medical practice where the medical practitioners regularly manifest their service through some form of “Interviewing, discussing, listening, and teaching” which all involve some form of storytelling. (Vannatta & Vannatta, 2013). So, if we aim to achieve improvement in the patient’s well-being through the narrative approach we start from the question of what the “problem might be for patients and their families, not for health care professionals and institutions.” (Frank, 2014, 16). This point corresponds well with the demands of the BCI-­induced experience. Importantly, the narrative interpretation often includes some form of a dialogue, either with others and ourselves, a dialogue that often occurs through some form of narrative conceptualization or imagination. Additionally, this imaginative story does not serve only as means of interpretation – as a meaning-making tool by which we aim to conceptualize our lives into a meaningful coherent structure. It also, and

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perhaps predominantly, serves as means by which we put things into action, into motion, within our lives. This makes stories not only the representations of events but also performances  – interpretations which “act on the world to make things become true, rather than merely reporting external truths.”9 This dialogical and performative aspect of narratives is vital to take into consideration when we contemplate that BCI patients, even without a provision of such a workable narrative, do realistically engage in a trust-building dialogue with their device which now becomes a new “character” in their newly situated life-story. Moreover, dependent on a successfully built dialogue with the device the patient either enters into a successful state of cooperation out of which she then acts within the world, or she does not. Crucially, this process is intimately personal, as no subject approaches this new condition in the same manner, and it cannot be said in advance what kind of outcomes will be manifested by the newly forming device-patient dialogue. Thus, it remains vital that the patient becomes empowered to form this dialogue according to the full extent of her ability for self-authorship. Additionally, it remains important to note that the dialogue between the device and the patient does not occur only at one moment in time, nor only at a specific period. Instead, it is a continuously ongoing process, which starts from a point where the patient does not “know” the device. That is, she is initially unfamiliar with the “behavior” of the device, its influence on her self-perception, and its impact on her daily activities. However, through constant use, made possible through a finely-tuned calibration, the patient and the device enter into accomplished cooperation, which according to our interpretation can be interpreted as symbiotic (Furlanis & Gilbert, 2023). Naturally, narratives as unfolding stories are well suited to accommodate such an unfolding relation, as they are often utilized as a “workable next story” – a form of a logical plot that empowers the subject’s self-realization (Frank, 2014). As Alasdair Macintyre famously noted, to answer the question ‘What am I to do?’ I have to first answer the question ‘Of what story or stories do I find myself a part?’ (MacIntyre, 2013, 216). This point marks a strategic point for a narrative-oriented BCI consideration especially when we think how the internal dialogue with the BCI device resembles a dialogue with a character with which I am now intimately related. Unfortunately, this internal dialogue between the patient and the device is prone to breaking and the resulting breach can result in a serious psychological fracture, the reason of which remains undetermined.10 Through a narrative lens, however, we can interpret this problematic occurrence as the inability of the previously held life story to accommodate the newly formed changes in my self-experience. What might be occurring here then is the inability of  As Frank notes, “We humans act on what we have imagined even as actions shape our imaginations….” and stories express those imaginations (Frank, 2014, 16). 10  As it has been shown that “some human subjects, even with the device functioning under medically approved parameters, might experience the need to reject the device post-implementation due to the perceived changes in one’s self-experience.“ (Furlanis & Gilbert, 2023). 9

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the patient to accommodate herself to the setting of this new life story, within which she is now intimately immersed. In other words, the point of fracture might be the result of the inability of the patient to successfully identify and position the “character” of the device and her orientation towards this novel character in the form of some coherent and accurate dialogue. Instead, the patient will feel suffocated by this new experience which instead of being empowering now becomes what narrative therapists call a “problem-saturated story” (Russel & Cohn, 2012). To prevent such fissures and restart the dialogue between the patient and the device in an empowering manner the patient could be enabled with a narrative, which is capable of being used as a resource of imagination, or precisely  – a reimagination of the existing subject-BCI relationship. Of course, the efficacy of such narrative resources for the generation of the patient’s self-empowerment should be evaluated based on accuracy and coherence. The narrative resource should “represent the reality in question as accurately as possible” (Schultz & Flasher, 2011, 400) and should be optimally utilizable for empowerment generation. In other words, the narrative as a resource should be finely tuned for the capability of BCI-related self-empowerment. If such narratives are adopted by the patient before the procedure, then we have a greater chance for the successful generation of patient empowerment which accommodates the peculiar conditions of BCI-induced treatment. This is a point worthy of further investigation. Acknowledgments  We are grateful to Ivan Cerovac for the bounteous provision of his philosophical expertise and an edifying exchange of ideas in the early stages of this chapter: “In dawn, the beauty reigns, and the way is clearer!”. FG research was supported by the EthicsLab. Funding from the Gwen Nettlefold Memorial Fellowship and the Goddard Sapin-Jaloustre Scholarship are gratefully acknowledged.

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Mahr, G. (2015). Narrative medicine and decision-making capacity: narrative medicine and capacity. Journal of Evaluation in Clinical Practice, 21(3), 503–507. https://doi.org/10.1111/ jep.12357 Miletic, T., & Gilbert, F. (2020). Does AI brain implant compromise agency? Examining potential harms of brain-computer interfaces on self-determination. In S. S. Gouveia & J. F. Teixeira (Eds.), Artificial intelligence and information: A multidisciplinary perspective. Vernon Press. Mora, A., Mariela, C. S.-L., Moons, P., & Bratt, E.-L. (2022). Definitions, instruments, and correlates of patient empowerment: A descriptive review. Patient Education and Counseling, 105(2), 346–355. https://doi.org/10.1016/j.pec.2021.06.014 Mosley, P.  E., Robinson, K., Coyne, T., et  al. (2021). ‘Woe betides anybody who tries to turn me down’. A qualitative analysis of neuropsychiatric symptoms following subthalamic deep brain stimulation for Parkinson’s disease. Neuroethics, 14, 47–63. https://doi.org/10.1007/ s12152-­019-­09410-­x Nussbaum, M. C. (2013). Creating capabilities: The human development approach. Belknap Press. Paul, L.  A. (2015). Review of précis of “transformative experience”. Philosophy and Phenomenological Research, 91(3), 760–765. http://www.jstor.org/stable/24672840 Paul, L. A. (2016). Transformative experience. Oxford University Press. Petticrew, M., Bell, R., & Hunter, D. (2002). Influence of psychological coping on survival and recurrence in people with cancer: Systematic review. BMJ (Clinical Research Ed.), 325(7372), 1066. https://doi.org/10.1136/bmj.325.7372.1066 Pham, C., & Gilbert, F. (2019). Unbacked futures: Ethical issues raised by news media futuristic depiction of brain-computer interfaces. Bioethica Forum, 12(1/2), 15–28. Pugh, J. (2020). Clarifying the normative significance of ‘personality changes’ following deep brain stimulation. Science and Engineering Ethics, 26, 1655–1680. https://doi.org/10.1007/ s11948-­020-­00207-­3 Pugh, J., Pycroft, L., Maslen, H., et al. (2021). Evidence-based neuroethics, deep brain stimulation and personality – Deflating, but not bursting, the bubble. Neuroethics, 14, 27–38. https://doi. org/10.1007/s12152-­018-­9392-­5 Robeyns, I. (2017). Wellbeing, freedom and social justice: The capability approach re-examined. Open Book Publishers. Robeyns, I., & Byskov, M. F. (2021). The capability approach. In E. N. Zalta (Ed.), The Stanford encyclopedia of philosophy (Winter 2021 Edition). https://plato.stanford.edu/archives/ win2021/entries/capability-­approach/ Russell, J., & Cohn, R. (2012). Narrative therapy. Lennex Corporation. Sample, et  al. (2019). Brain-computer interfaces and personhood: interdisciplinary deliberations on neural technology. Journal of Neural Engineering, 16(6), 063001. https://doi. org/10.1088/1741-­2552/ab39cd Schönau, A., Dasgupta, I., Brown, T., Versalovic, E., Klein, E., & Goering, S. (2021). Mapping the dimensions of agency. AJOB Neuroscience, 12(2–3), 172–186. https://doi.org/10.108 0/21507740.2021.1896599 Schultz, D. S., & Flasher, L. V. (2011). Charles Taylor, phronesis, and medicine: Ethics and interpretation in illness narrative. Journal of Medicine and Philosophy, 36(4), 394–409. Schüpbach, M., Gargiulo, M., Welter, M. L., et al. (2006). Neurosurgery in Parkinson disease: A distressed mind in a repaired body? Neurology, 66, 1811–1816. Sen, A. (1982). Poverty and famines: An essay on entitlement and deprivation. Oxford University Press. Sen, A. (2010). The mobile and the world. Information Technologies and International Development, 6, 1–3. Skinner, E.  A., & Zimmer-Gembeck, M. (2016). Coping. In Encyclopedia of mental health (pp. 350–357). Elsevier. Snoek, A., de Haan, S., Schermer, M., et al. (2021). On the significance of the identity debate in DBS and the need of an inclusive research agenda. A reply to Gilbert, Viana and Ineichen. Neuroethics, 14, 65–74. https://doi.org/10.1007/s12152-­019-­09411-­w

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Steinert, S., Bublitz, C., Jox, R., et  al. (2019). Doing things with thoughts: Brain-computer interfaces and disembodied agency. Philosophy and Technology, 32, 457–482. https://doi. org/10.1007/s13347-­018-­0308-­4 Stevens, I., & Gilbert, F. (2020). N-of-1 Trial for closed-loop deep brain stimulation devices. Ethics & Human Research – The Hasting Center. https://doi.org/10.1002/eahr.500045 Stevens, I., & Gilbert, F. (2022). International regulatory standards for qualitative measurements in deep brain stimulation in clinical research. Journal of Empirical Research on Human Research Ethics, 17(3). https://doi.org/10.1177/15562646221094922 Stramondo, J. (2019). The distinction between curative and assistive technology. Science and Engineering Ethics, 25(4), 1125–1145. Thomson, C. J., Segrave, R. A., & Carter, A. (2021). Changes in personality associated with deep brain stimulation: A qualitative evaluation of clinician perspectives. Neuroethics, 14, 109–124. https://doi.org/10.1007/s12152-­019-­09419-­2 Vannatta, S., & Vannatta, J. (2013). Functional realism: A defense of narrative medicine. The Journal of Medicine and Philosophy, 38(1), 32–49. https://doi.org/10.1093/jmp/jhs060 Viaña, J. M. N., Vickers, J. C., et al. (2017). Currents of memory: Recent progress, translational challenges, and ethical considerations in fornix deep brain stimulation trials for Alzheimer’s disease. Neurobiology of Aging, 56, 202–210. https://doi.org/10.1016/j.neurobiolaging.2017.03.001 Zawadzki, P. (2021). Dimensions of the threat to the self posed by deep brain stimulation: Personal identity, authenticity, and autonomy. Diametros, 18(69), 71–98. https://doi.org/10.33392/ diam.1592 Zuk, P., & Lázaro-Muñoz, G. (2021). DBS and autonomy: Clarifying the role of theoretical neuroethics. Neuroethics, 14, 83–93. https://doi.org/10.1007/s12152-­019-­09417-­4

Chapter 13

Phenomenology of Emotions and Algorithms in Cases of Early Rehospitalizations Susi Ferrarello

13.1 Introduction It is difficult not to feel vulnerable in a hospital room waiting for surgery or for an important diagnosis. Often it is up to us to collect some courage and cope with the stress involved in being hospitalized. Nowadays in health care, technology is crucial to speed up processes and organizing data (Brannigan, 2021). As a result, in the past fifty years health care has become more and more de-localized both for the users and the health care professionals. Now telehealth represents both for doctors and for patients a way to practice care from everywhere thanks to algorithms operating directly on phones and computers. Many preventative and urgent care services are delivered at retail locations (e.g., HealthHUB expansion by CVS and Walmart Health’s Health Center) and primary non urgent services are dealt through chats or video calls. If this dematerialization bears with itself the virtue of speeding up contacts by reducing the distance with the provider, and minimizing the cost to keep health care running, it also entails the risk of dematerializing health. Our feeling well, in fact, risks to become as disembodied as the technology through which it is conveyed, thus impacting the well-being of those we love as well as our own. In this paper I am going to discuss how phenomenology can support the integration of emotions in technology and how this integration can improve our chances for that “decent survival” that the founder of bioethics, Potter, has envisioned as the main goal of this discipline (1964, 1971, 1972, 1975, 1988). In particular, the proliferating inventions that are taking place under the umbrella of artificial intelligence (AI), mostly through Machine Learning Technology (MLT), demand from us to become more and more aware of our emotional and ethical biases. An emotionally not-intelligent artificial intelligence would be, by definition, useless and S. Ferrarello (*) Department of Philosophy, California State University, East Bay, Hayward, CA, USA © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 E. Boublil, S. Ferrarello (eds.), The Vulnerability of the Human World, Philosophy and Medicine 148, https://doi.org/10.1007/978-3-031-41824-2_13

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damaging for human beings and their environment, especially if we infect it with our emotional and ethical flaws (Idhe, 1990). For this reason, I believe that descriptive phenomenology can be a useful philosophical and psychological approach to improve the moral and emotional intelligence behind machine learning programming (Dreyfus, 1978, 1988). In fact, by describing (Giorgi, 2009) and interpreting (Colaizzi, 1978) the phenomena on which the programming is going to intervene, phenomenology can provide qualitative data that unveil moral and social biases, thus helping the programmer to avoid their reproduction in the new technology. The phenomenological approach trains that experience-based moral competence of which artificial intelligence systems are generally in need. Phenomenology is capable of describing that pre-reflective and non-declarative nature of ethical inferences that can make sense of the surrounding and generate context-based judgments on which algorithms can be programmed to make both fair and detectable decisions (Casacuberta, 2015). Henceforth, in this paper I am going to discuss first the most common critiques that phenomenology has toward technology and second the constructive way in which phenomenology can address them. In both parts, I will refer to the practical case of the algorithms that have been programmed to solve the problem of early re-hospitalization.

13.2 The Disembodied Technology and Its Ethical Opacity The literature on phenomenology and technology is quite wide,1 but for the sake of the topic I will focus here on two of the main problems that phenomenology has foreseen in relation to technological growth: (1) the ethical opacity of the technological attitude and (2) how innovation would be involved both in relation to its use and in relation to the context. Technological inventions, in fact, might inherit the biases of the programmer and might be context-lessly conceived so that no co-­ constitutive relationship would be in place between user and used device. Ethical clarity of the programming and an embodied view of user-used device relationships should be achieved in order to avoid ethical biases to be replicated within the technological realm. The descriptive approach of phenomenology can help in both directions.

 See: Heidegger, M., 1977, The Question Concerning Technology and Other Essays, New York: Harper Torchbooks; Heim, M., 1993, The Metaphysics of Virtual Reality, New  York: Oxford University Press; Ihde, D., 1990, Technology and the Lifeworld: From garden to earth, Bloomington and Indianapolis: Indiana University Press; Don Ihde, 2002, Bodies in Technology, Minneapolis: University of Minnesota Press; Stiegler, B., 1998, Technics and Time, 1: The Fault of Epimetheus, Stanford: Stanford University Press; Dreyfus, H.L., 1999, “Anonymity versus commitment: The dangers of education on the internet,” Ethics and Information Technology, 1(1): 15–20, 1999. 1

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Since phenomenology investigates the conditions under which the phenomena appear to us as such, the phenomena cannot be considered outside their co-constitutive relationship with the life-world in which they appear. Every phenomenon belongs to the life-world and acquires its meaning through it; technology is not exempt from it. Heidegger criticized the fact that the technological mood of human beings approaches the world as it was already framed for us and ready for its use (1977). Hence, the co-constitutive relationship between subject and object, experiencer and experienced was detrimental to the object-side of the relationship because it always involved a profitable use rather than a meaning in itself. The meaning that the world has to offer to us exhausts itself in the use we make of it. This enframing mood (Gestell), as Heidegger calls it, is part of the everydayness of technology, and as such the enframing constricts what it is possible for the actor to imagine as possible, not just for the tool, but for the world she hopes to impact with and through the tool. This dynamic prevents human beings from establishing meaningful relationships with the daily context in which their lives unfold; this generates, of course, a detachment from many layers of our environment and an impoverishment of our lives. More specifically, Dreyfus (1992) expanding on Heidegger’s analysis, shows how context-less technology inherits the bias of a representational worldview which, from Descartes’ cogito to the present cognitivist and AI communities, consists in describing the world as an exclusive conceptual cognition. This is to say that AI lacks familiarity with the world; the performance of data in the hands of expert programmers loses its bodily weight and is dematerialized in a life-less world. Each problem becomes a cognitive one without a context or a body. The problematic consequence of it is that living beings as part of this representational reality would dematerialize, as well, the material complexity of their lives. Machine learning technology needs to remain human and situated, as learning is not just mind but a cultural, collective word-meaning bestowal in a life-world. Since it would be pointless to slow-down technological growth, science has to find a proper pace to support this growth with wisdom; I believe that the phenomenological approach can offer its support to science.2

13.3 The Case How can phenomenology help in the case of algorithms elaborated to study early readmissions in hospitals? MLT has been used to devise algorithms to guarantee better care during hospitalization and avoid early rehospitalizations (Kansagara

 On this point, the French phenomenologist Stiegler (1998) in his trilogy, Technics and Time, states how the fast pace at which technology is advancing generates for the human being a big problem in terms of meaning and value making. 2

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et al., 2011; Zhan & Miller, 2003, 58–63; He et al., 2014). Yet, these algorithms are based on administrative claim-based models (He et al., 2014) that do not say anything about the emotional condition of the patient or the practitioner and accordingly their real chances to be soon re-hospitalized. None of the data that the algorithms use speak of the relational network and emotional support that the patient will receive once back home--data are context-less and unemotional. “The goal of the algorithm is to avoid that 17.6% of hospital admissions will result in readmissions within 30 days of discharge, with 76% of these being potentially avoidable” (M.P.A. Committee, Report to Congress: Promoting Greater Efficiency in Medicare, 2007). Yet, most of the algorithms use administrative claim data as a basis to predict 30-day empirical risk factors; these administrative data include standardized billing codes and general admission information available before discharge. Similarly, in another study (Kansagara et al., 2011) the algorithm to predict hospital readmission risk was elaborated with the purpose to identify which patients would benefit the most from care transition interventions and accordingly risk-adjusted readmission. In this case, as well, data came from an administrative hospital database which provides information concerning the admission and discharge of the patient but not more than that. In this case-study, though, they compared this model with six different readmission risk prediction models applied on the same population. Only two of these models, those that incorporated functional and social variables, were of actual help to detect the risk of readmission. As the authors assert, the models available still performed poorly and needed to improve their performance as its use became more widespread (2013, 1688). There is a wide range of literature on statistical techniques (Foltz, 2001) to assess patient readmission risk by using many types of available data, most of these data focus on the semantic level of the information. A wide spectrum of data sources includes patient demographics, social characteristics, medications, procedures, conditions, and lab tests (Choudhry et al., 2013), others collect only a single source of data, for example administrative data (He et  al., 2014), others again propose “logistic regressions” on independent variables chosen by hand (Futoma et al., 2015).

13.4 The Inherited Bias From what emerged, it seems that these algorithms are inheriting the dualistic Cartesian bias still lingering in medical care environments: hospitals take care of the body but not of its emotional and spiritual well-being (Broedner, 2019). Technology knows “what humans know, how and why they know” (Weizenbaum, 1976). If we do not tell technology that body and mind are equally important for well-being, technology will not be able to predict the well-being of the patient. If we do not possess data that describe the emotional support network of the patients once they are at home, the administration data collected in hospitals will not be sufficient to calculate effective algorithms (Zhan & Miller, 2003, 58–63). For this reason, the

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qualitative research that phenomenology conducts3 can serve as an integrative ­support not to replicate the social bias toward emotions but provide useful data for the algorithms to fit the goal. I believe that qualitative data produced from descriptive and interpretive phenomenology can help to close the data gap that these algorithms need in order to produce reliable predictions. This combination of hot and cold cognition in predicting outcomes would allow us to represent highly non-linear and highly-varying functions such as those implied by the emotional-related-data from discharged and newly admitted patients (La Rochelle & colleagues, 2009). Hinton and Salakhutdinov (2006) proposed to initiate the parameters of a deep belief network whose generative model holds many layers of hidden causal variables based on the training algorithm of restricted Boltzmann machines. This route would help to integrate emotions in the description so to avoid that social and ethical biases would be passed on to the programming; yet, the downside of this proposal would be the ethical opacity of the outcome. In fact, even though this way of programming would allow for more complexity which would make the machine learning more intelligent, it would make its decisional route more difficult to detect; giving these machines more emotional intelligence would turn them into more ethically opaque beings. As Bostrom and Yudkowsky (2011) remarked, machine learning technology whose decisions are based on decision trees or Bayesian networks are much more transparent to programmer inspection and accordingly their ethical inherited biases are easier to detect. “It will become increasingly important to develop AI algorithms that are not just powerful and scalable, but also transparent to inspection—to name one of many socially important properties” (2011, 2). Therefore, even if as it happens, changes in federal regulation of the healthcare industry (De Castro, 2015) together with the novel use of payment penalties based on quality of care metrics require the creation of AI models to measure the meaning of well-being and its costs on health care structures,

 More on the use of phenomenology in qualitative methods in Ferrarello, Zapien (2018, chapter I.1, p. 13): “Generally, textbooks mention the methods of Giorgi, Moustakas, Van Manen, Smith and Colaizzi as the most popular ones; the common denominator of these being the use of Husserl’s phenomenology as a guidance to read psychological data regarding a collective number of people. The goal is to grasp the essence of living phenomena as they are experienced by different participants (e.g., resilience as it is universally experienced) As van Manen wrote, the goal is to ‘grasp the very nature of the thing’ (van Manen, 1990, 177). According to Moustakas a phenomenological investigation describes how participants lived different experiences in relation to the same phenomenon (1994). The inquirer is in fact to collect data from participants that can relate to that phenomenon and unfold the description of what makes that experience as such for all of them. The actual description consists of ‘what’ they experienced and ‘how’ they experienced it (Moustakas, 1994). The same goal prevails in Giorgi’s and Colaizzi’s methods; what counts in the application of the phenomenological method is the description of the meaningful essence that qualifies the phenomenon chosen as the object of the inquirer’s study. Giorgi’s descriptive phenomenological method (2009), whose school is represented today by Churchill, Wertz, Englander, Applebaum and others, articulates a method that is named ‘descriptive’, because it aims at a description of the phenomenon which is as free as possible from interpretation”. 3

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we need to take into consideration the need for ethical clarity. The quality of data that descriptive phenomenology can collect is ethically transparent and can feed the models proposed with a pre-declarative ethically intelligent system that reveal the experience instead of constructing one.

13.5 What Can Phenomenology Do in This Case Phenomenology can secure the ethical clarity of the data both in relation to the context and in relation to the way in which they are used to program. First, the phenomenological approach collects qualitative data that can tell us something, even if it is still in its non-predicative form, about the lived-experience of the whole phenomenon and not only of its representational aspect; moreover, it invites the programmer to adopt a self-questioning attitude that takes into consideration the experiential setting from which the data stem. I will examine these points in the following sections, I will start with the latter.

13.6 Presuppositionless Phenomenology Phenomenology invites a self-questioning attitude because of its presuppositionless approach. This attitude increases the flexibility and at the same time the rigorousness of bioethical choices that the practitioner has to make in relation to its object of study as free from any Zeitgeist and personal bias.4 As Svaeneus writes in his book dedicated to phenomenological bioethics (2017), although we cannot, yet, talk of a phenomenological bioethics it is true that phenomenology has already informed parallel fields such as care, nursing, narrative, feminist ethics, each one of them informing medical ethics and medical humanities. Since phenomenology is based on the study of the bodily lived-experience its application on the study of illness, pain, and disability has revealed itself to be particularly insightful (Toombs, 2001). Being able to switch from the first to the second perspective (that is, an I-thou point of view) is what allows adequate descriptions of the lived experience to emerge.

 According to Chatterjee, there are at least four forms of presuppositions. First, the material presupposition assumes the veracity of an external world and considers its events as causally ordered. Second, the cognitive presupposition involves that it is possible for us to gather valid knowledge about the object of our investigation. Third, formal presupposition relates to the predicative idea according to which the subject, copula and predicate scheme of judgement will lead us to substance. The fourth presupposition consists in the acknowledgment of the authority of predecessors such as for example Descartes’ “cogito, existo” as rooted in St Augustine’s contention regarding the credibility of the existence of the ego. Chatterjee pointed out that Husserl rejects all these presuppositions, but the presuppositions of natural science. In fact, the departure point for any phenomenological investigation is the concreteness of life and the way in which this is experienced. 4

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In that sense, according to Svenaeus, phenomenology operates as a philosophical anthropology that can reveal, according to a reflexive equilibrium, thorny bioethical lived-experiences. As the author puts it: “Phenomenology is not a theory about other theories, but rather a theoretical enterprise which tries to take a step back from other theories in order to free itself from prejudices and be able to study ‘the things themselves’ as they become manifest in their ‘self-showing’.” (2017) Phenomenology can let things to self-show because it is not rigidly fixed to any theoretical presupposition.5 A phenomenological outlook before programming algorithms would oblige the programmer to situate the analysis and check its own position in relation to the data. The ongoing theoretical (self-)clarification that this attitude involves allows phenomenology to pursue data that are ethically vetted by this self-questioning attitude and are ethically situated because they are based on the lived-experience, even if they do not express themselves in a predicative form. Moreover, both phenomenological ethics and phenomenological psychology can provide support to improve research in the field of bioethics and technology.

13.7 Phenomenological Ethics Phenomenology can secure the ethical clarity of data because it is a content based approach. Phenomenological ethics is a relatively new approach to ethics whose emphasis is put on the description of the lived-experience and the ethical phenomenon.6 Phenomenological ethics lends itself well to discussion of bioethical problems and their solutions because of its bi-focal attention to the epistemology of good

 The reason why Husserl seems to reject presuppositions has not only theoretical but also historical roots according to Embree. After the First World War, in fact, a good number of universities were funded by the Catholics; this means that all professors had to take the Oath against Modernism and Affirmation to the Church in order to get funds. The church’s doctrines on Infallibility of the Pope, immaculate birth of Mary, and purgatory, were a part of Oath against Modernism and Affirmation to the Church. And the Church used to punish those who opposed them or criticised them. Husserl’s claim of presuppositionless came as a wise escamotage to free his philosophy and phenomenological method from this Zeitgeist while giving it the flexibility to be continuously questioned and proved. Hence, being presupposition-less does not mean to give up on the rigorousness of science. On the contrary it means to devote one’s knowledge to its truth without being trapped inside the fashion of the time or the biases of one’s own point of view. Phenomenological descriptions are presuppositionless in the sense that they do not allow a presupposition to remain a presupposition even when it is devoid of its meaning. 6  Its origin can be traced back to Brentano’s “The Origin of the Knowledge of Right and Wrong” (1889) but it is with the development of Husserl’s phenomenological ethics (1908, 1914, 1920) that its themes started inspiring a long line of thinkers whose influence reached the fields of philosophy, psychology, theology, gender studies, bioethics, and political science. The main themes of phenomenological ethics focus on the one hand on the epistemological understanding of the highest practical good and its ethical demand (Husserl, Reiner, Pfänder, Sartre, Løgstrup, Levinas), on the other hand on the description of what we do when we behave in a moral way (Scheler, Hildebrand, Hartmann, Levinas, Simone De Beauvoir). 5

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and its experiential normative demand which has brought leading phenomenologists, such as Levinas and Scheler, to abandon the primacy of epistemology to favor the importance of moral experience and its practical adherence to the experiential reality. They argued, in fact, that cognitive performance is grounded in prior moral experience and not the other way around. Moreover, phenomenological ethics emphasizes the role of emotions in meaning making as we can see in Brentano’s and Scheler’s axiology. According to this approach and in agreement with Verbeek (2011), the algorithms should be calculated after self-analysis of the programmer’s experience in relation to the phenomenon on which they are working and using data that come from full-rounded experiences. On this latter point phenomenological methods in psychology can help to provide qualitative data capable of integrating the emotional aspect of the phenomena on which the engineer needs to intervene.

13.8 Phenomenological Methods in Psychology and Data Collecting Although new phenomenological methods are on the horizon,7 the last century has seen the growth of four major phenomenological methodologists  – Giorgi, van Manen, Moustakas, and Colaizzi – who devised a way to combine philosophical phenomenology with data collection for psychological studies. For the reason of space, I will describe here only the main features of their approaches. They draw their method from Husserl’s phenomenology and all of them use the application of the epoché and reduction in order to allow the researcher to encounter the phenomenon in question in a manner that addresses the issue of the consciousness of the researcher and the participants’ experiences in this process8. In entering the epoché,  See Zahavi’s (2007) and Ratcliffe’s (2015) works.  How each of these theorists understands and describes the method of applying Husserl’s ideas in the form of a research method, by addressing the relationship between researcher and the phenomenon and what is bracketed or included in the epoché, differs slightly. And these differences can amount to fairly important nuances of meaning in the findings of a phenomenological research endeavour. Van Manen (1990), for example, allows for interpretative or hermeneutic activity concurrent to descriptive activity within the epoché, as he sees no clear distinction between the act of describing and the act of meaning-making for the phenomenologist. While this seems sensible and consistent with the idea that realities are treated as phenomena, that which was to be bracketed and that which is to enter the epoché and therefore is available to be used to make meaning or interpretation is left unclear in van Manen’s method. Rigorous attention to this distinction is important in the use of van Manen’s approach, lest under the guise of hermeneutic meaning-making all that was to be bracketed is merely included and the entire point of the phenomenological inquiry, as a phenomenological one, is lost. His suggestion to researchers is that we guard against this by “…actively mak[ing] explicit our understandings, beliefs, biases, assumptions, presuppositions and theories so that we might hold them deliberately at bay and even to turn this knowledge against itself, thereby exposing its shallow or concealing character’.” (van Manen, 1990, 47). In many studies using van Manen’s method, then, it is customary for the researcher to consider and explicitly state up front, almost like a confession, the relevant positions that she holds so that they can be made conscious 7 8

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phenomenologists (in this case, the designer, the user, the researcher) are urged to make conscious to oneself all of the relevant experiences, presuppositions, beliefs, judgements, ideas, and theories that the researcher holds about the phenomenon in question and to place them in metaphoric brackets – suspended for the periods of the phenomenological inquiry and analysis. We do not forget about them, notes Giorgi (2009), we simply allow them to play in the background while we encounter the phenomenon as it is presented to us in a more naïve manner unencumbered by the usual ways we might consider the phenomenon from what is within. This very important part of the inquiry process is done in order to make space for an encounter with the phenomenon as separate and distinct from any particular body of knowledge, ideas, or values that we might apply to the phenomenon in question. In the case we are studying this would translate into designing the algorithms after having raised the questions “How do these data speak to me? What would be my assumptions in relation to them? How can I make them speak to a person in its integrity?” The process of entering and maintaining the epoché is for Giorgi (2009), for example, not impossible, but one of split consciousness. “…[Q]uite often one is very aware of the past as one tries not to let it influence an ongoing experience’” (2009, 92). There will be then, both an attending to that which is bracketed, in order to maintain it in brackets, and a mindful focus on a naïve encounter with the phenomenon in question  – at the same time. In Van Manen this explicitation occurs through the vehicle of the artistic and pre-predicative expression of the participant in relation to the researcher. This particular mode of split consciousness including the mindful focus on the phenomenon itself is the ethical nature of seeing and describing that phenomenological research demands in order to assure that the phenomenon is addressed descriptively so that we might ‘“come back to the things themselves'’”, as the phenomenologist’s slogan, taken from Husserl, urges us to do. All of the phenomenological methodologists named above, in embracing Husserl’s phenomenology, understand the task of psychological phenomenological research to include a relationship between the self or, in this case the programmer, and the object of inquiry (which can also be a subject who is experiencing and has and used to consider if, in fact, they have bled into the descriptions without the researcher intending so. This then requires that one make all (or as many as one can muster) understandings, beliefs and assumptions clear at the outset. Phenomenologists’ critique of this approach includes that the focus is now on the researcher’s presuppositions and contents of her consciousness rather than the disciplined description of the phenomenon (Finlay, 2009). For this reason, for these inquiries, van Manen’s method was not used. The other three methodologists generally suggest researchers apply the epoché and reduction faithfully and aim to be as loyal as possible to a description of the phenomenon in question rather than provide an interpretation thereof. Moustakas (1994), however, in addition to the application of the epoché and reduction and a goal pure description, also considers the researcher’s intuitive self-discoveries as a source of coming to an understanding of the descriptive essence of a phenomenon (Friesen et al., 2012). What we call intuition is perhaps best understood as part of the consciousness of the researcher and may or may not be relevant to the description of the phenomenon in an essential manner. Moustakas is not entirely clear in his description of what exactly constitutes intuition and how one might distinguish intuition from other aspects of consciousness (e.g. projection, fantasies, ideas, interpretations, sensory information), making this allowance somewhat problematic.

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a consciousness) that is understood to be both constitutive of and constituted by consciousness. We are not interested in an absolute truth, but rather, ‘“ …realities are treated as pure “‘phenomena”’ and the only absolute data from where to begin’”. For Husserl, the phenomenologist, seeks to be rigorously descriptive of the various layers of consciousness that arise through a phenomenological inquiry in order to do justice to the endeavour in an ethical, understood as purely (or as purely as possible), descriptive manner. While phenomenological methods all subscribe to the idea that the essential description of a phenomenon of inquiry appears to the consciousness of the researcher and is constituted by the consciousness of the researcher, Moustakas, in suggesting the inclusion of intuition, allows for more of the researcher’s consciousness to be included in the description than do others. Because these inquiries include an interest in investigating specifically the issues of identity, intimacy, and time and will use references to the psychological ego, the intentional ego and the transcendental ego, there is a desire to rely on a method that is not dependent on what the researcher may call intuition in the analysis as distinct from that which is bracketed or that which is described and that which may have relevance to particular parts of the identity of the researcher. Colaizzi, another methodologist who offers a phenomenological research method, allows, in addition to what remains when applying the epoché, dialogic aspects of the inquiry between participants and researchers (Friesen et  al., 2012). The benefits of van Manen’s, Moustakas’, Giorgi’s, and Colaizzi’s approaches consist in the ability to consider hermeneutics, intuitive self-­ discoveries, and the relational intersubjective dimensions of the data in a context-­ based and ethically straightforward manner.

13.9 Conclusion This paper describes possible conceptual and methodological tools that phenomenology can provide to bioethics in its technological applications in order to take into account the vulnerability and emotions that play an important role in human well-­ being. As in the case of MLT applied to adjust the risk of early rehospitalizations, the emotional intelligence of the AI can be nourished if qualitatively richer data are provided which are both ethically transparent (ethical phenomenology) and capable to grasp the emotional life of the individual in its co-constitutive context (phenomenological method). In this sense, the presuppositionless approach of phenomenology can nourish, through epoché and reduction, a self-questioning attitude that allows the programmer to be vulnerable and at the same time rigorous with its data so to avoid transferring its own social and ethical biases to them. On the one hand, the ethical aspect of phenomenology allows us to look at the content of the lived-­ experience in their predicative and pre-predicative facie so to have a sense for the emotional and pre-verbal layers that nourish the lived-experience. On the other hand, the phenomenological method of research applied in psychology offers a way to transcribe and interpret these data in order to gather generalized results that are

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qualitatively rich and contextualized. Each of these branches of phenomenology deserves a larger investigation than the one I presented here, but I would leave this to another moment. My goal here was to provide a map and see how this could apply on a practical case.

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