Applying Nonideal Theory to Bioethics: Living and Dying in a Nonideal World 3030725022, 1240492047, 9783030725020, 9783030725037

Table of contents :
Contents
About the Contributors
Part I: Nonideal Theory
Chapter 1: Introduction to Nonideal Theory and Its Contribution to Bioethics
1.1 History and Background: Ideal and Nonideal Theory
1.2 The Nonideal Approach to Bioethics
1.3 The Future of Nonideal Approach to Bioethics
1.4 Nonideal Theory and Bioethics in the Time of COVID-19
1.5 Contents of the Volume
References
Chapter 2: Ideal and Nonideal Theories: The Challenges of Decision-Making in an Imperfect World
2.1 Introduction
2.2 Ideal and NonIdeal Theories
2.2.1 Conceptual Distinctions
2.2.2 Ideal Versus NonIdeal
2.2.3 Good and Bad Idealizations
2.2.4 Different Views of Ideal Theory
2.2.5 The Decision-Making Process: Requirements and Deliberation
2.3 Ideal and Nonideal in Bioethics
2.3.1 Case 1: Conscientious Objection and Abortion
2.3.2 Case 2: Research with Pregnant Women
2.4 Conclusion
References
Chapter 3: The Positioning of Moral Agents and Its Relationship to Nonideal Bioethics
3.1 Bioethics Methodology and Moral Positioning
3.1.1 Strongly Idealized Methodology
3.1.2 Strengths and Limitations of Several Popular Approaches to Method in Bioethics
3.1.2.1 Pluralistic Principlism
3.1.2.2 Non-Particularist Casuistry
3.1.2.3 Morality as a Public System
3.1.2.4 Idealizing Assumptions About the Common Morality and Moral Principles
3.2 Naturalized Moral Epistemology and the Common Morality
3.2.1 Naturalized Common Morality I: Shared Ecological Predicaments
3.2.2 Naturalized Common Morality II: Shared Evaluative Spaces
3.2.3 Naturalized Common Morality III: External Coherence
3.3 Conclusion
References
Chapter 4: Critical Theoretical Methodology for Nonideal Contributions to Bioethics
4.1 Nonideal Theory and the Paradox of Ideal Theory’s “Realism”
4.2 Marx’s Critique of Political Economy (and Ideal Theory) and Accounts of Structural Alienation
4.3 A Nonideal Marx-Informed Critique of Bioethics
4.4 Social Pathologies of Health Care as a Nonideal Theoretical Model for Bioethics
References
Chapter 5: Conditioning Principles: On Bioethics and the Problem of Ableism
5.1 Medicine, Bioethics, and Justice
5.2 Principles, Epistemic Schemas, and Normative Force
5.3 The (Problem of the) Principle of Ableism
5.4 Ableism and Ideal Theory
5.5 Ableism and Epistemologies of Ignorance
References
Chapter 6: Bioethics Education and Nonideal Theory
6.1 Bioethics Education
6.2 Nonideal Theory
6.2.1 Three Approaches to the Ideal/Nonideal Distinction
6.2.2 Shared Commitments of Nonideal Theory
6.3 Race and Medicine
6.3.1 Race as Social Construction
6.3.2 The Maintenance of White Supremacy
6.3.3 Applying Nonideal Theory
6.4 Mental Health
6.4.1 Stigma
6.4.2 Coercion
6.4.3 Applying Nonideal Theory
6.5 Practical Implications
References
Part II: Applications in Bioethics
Chapter 7: Individual Moral Responsibility in the Anthropocene
7.1 Introduction to the Problem
7.1.1 Environmental Justice as a Complex Moral Problem
7.1.2 Moral Intuitions: Is the Idea of Individual Responsibility for Group Harm Quixotic?
7.2 Nonideal Theory
7.2.1 Ideal Endpoint Principles and Idealized Social Conditions
7.2.2 Enduring Empirical Conditions and Normative Pre-conditions
7.2.3 Some Shortcomings of Ideal Theory
7.3 Making a Market Difference
7.3.1 The Basis for Sarah’s Food Consumption Decisions
7.3.2 The Example of Factory-Farmed Chicken
7.4 Making a Climate Difference
7.4.1 How Climate Harms Are Produced
7.4.2 The “Share of the Total” View
7.4.3 Risking and Wronging
7.4.4 Triggering Non-linear Climate Risks
7.4.5 Salience and Unacceptable Risk
7.5 Making a Relational Difference
7.5.1 Moral Indifference and Business as Usual
7.5.2 Reciprocity
References
Chapter 8: An Institutional Ethic of Care
8.1 Care Theory
8.1.1 Situating Care Ethics
8.1.2 Care and Justice
8.1.3 Care Justice and Health Care
8.2 Nonideal and Ideal Theory
8.2.1 Care Theory as Nonideal Theory
8.3 An Institutional Ethic of Care
8.3.1 From a Public Ethic of Care to an Institutional Ethic of Care
8.3.2 Institutional Care Ethics in Health Care
8.4 Conclusion: Nonideal Theory Informing an Ideal One?
References
Chapter 9: Power, Identity, and Liminality in an American Hospital
9.1 Patient Identity as Trauma
9.1.1 The Trauma of Hospitalization
9.1.2 The Trauma of Post-hospitalization
9.2 Medical Practice and Liminality
9.3 Holding Each Other’s Gaze: Narrative Medicine and the Power of Stories
9.4 Conclusion
References
Chapter 10: “Being at Home”, White Racism, and Minority Health
10.1 A Metaphor: Two People Walking Down a Path
10.2 Racism and Microaggressions
10.3 Microaggressions’ Contribution to Stress
10.4 Ideal and Nonideal Theory
10.4.1 Being at Home
10.5 How Minority Persons Should Respond to Microaggressions
10.6 On the Limitations of Health Disparities as a Proxy for Levels of Overall Inequality
References
Chapter 11: Black and Sleepless in a Nonideal World
11.1 The Problem of Racial Disparities in Sleep Sufficiency
11.2 Sleep Hygiene
11.3 Ideal Theory
11.3.1 Ideal Theory: Sleep Hygiene
11.4 Sleep Sufficiency and Nonideal Theory
11.4.1 Housing Discrimination
11.5 Concerns About Sleep Hygiene at the Micro and Macro Level
11.6 Conclusion
References
Chapter 12: Thin or Thick, Real or Ideal: How Thinking Through Fatness Can Help Us See the Dangers of Idealized Conceptions of Patients, Providers, Health, and Disease
12.1 What Is Ideal Theory, and How Is Our Dominant—and Working—Conception of Health an Example?
12.1.1 Health as an Ideal Theory
12.1.2 You Can’t Get There from Here: Navigating the Gap from the Real to the Ideal
12.1.3 We Don’t Work Like That: Idealizations of Agents and Conditions/Methods
12.1.4 Ideals as Utopias, Utopias as Dystopias
12.2 Ideal Theory Fails at Fatness
12.2.1 Biostatistical Theory (BST) of Health as Ideal Theory, and the Construction of Obesity as a Disease
12.2.2 Healthism and Ideal Theory
12.2.3 It’s Not Even Healthy to Make Health About Body Size
12.3 Nonideal Theory and Method
12.3.1 Nonideal Theory and Health: Humility, Intersectionality, and Social Determinants of Health
12.3.2 Nonideal Theory, Health, and Fatness
12.4 Conclusion: Imperfectionist Health in a World That Will Never Be Ideal
References
Chapter 13: Incarceration, Health Harm, and Institutional Epistemic Injustice
13.1 Aging in Prison: The Data
13.1.1 Sentencing, Policies, and Criminalization of Mental Illness
13.1.2 Health Inside and Outside of Prison
13.2 Epistemically Oriented Approaches to Nonideal Theory and the Embodiment of Injustice
13.2.1 Ideal-as-Idealized: The Epistemic Components of Nonideal Theory
13.2.2 Institutional Epistemic Injustice
13.2.3 Institutions and Bodies
13.2.4 An Embodied Account of Institutional Epistemic Injustice in Prisons
13.2.5 Punishment on Top of Punishment
13.2.6 Health Harm and The Institutionalization of Prison Health Care Workers
13.3 Epistemic Practices for Resisting Health Harm
13.3.1 Epistemic Deferral and Epistemic Advocacy
13.3.2 Overt and Covert Epistemic Operations
13.3.3 Mingling of tactics
13.4 Conclusion
References
Chapter 14: A Nonideal Approach to Truthfulness in Carceral Medicine
14.1 Veracity in Bioethics
14.2 Carceral Medicine and Collective Struggle
14.2.1 Comments Regarding the Mutual Imbrication of Policing and Health Care Institutions
14.2.2 Comments Regarding Interactions Between Health Care Providers and Patients
14.2.3 Comments Regarding Pregnancy and Childbirth During Incarceration
14.3 Conclusion
References
Chapter 15: Dying in Detention: Where Are the Bioethicists?
15.1 Migrants Keep Dying in US Custody
15.2 Why Are Bioethicists Absent from Debates About Detainee Health Care (or Lack Thereof)? Some Ideas
15.3 A Potential Solution: Wilcox’s Nonideal Theory of Immigration Justice
15.4 A Wilcoxian Bioethical Case Study Analysis
15.4.1 Harm 1: U.S. Government Infringement on Migrant’s Right to Health Care
15.4.2 Harm 2: Lack of Oversight over Detention Facilities
15.4.3 Harm 3: U.S. Has Contributed to Why They Must Flee in the First Place
15.4.3.1 United States as Directly Responsible for Creating Conditions that Migrants Flee
15.4.3.2 United States as Indirectly Responsible for Creating Conditions that Migrants Flee
15.5 Where Bioethicists Should be
References
Chapter 16: Medical Deportation, Non-Citizen Patients
16.1 Medical Deportation
16.2 The Need for Nonideal Theory
16.3 Contractualism as Nonideal Theory
16.4 Applying Principles
16.5 Other Stakeholders
References
Chapter 17: Nonideal Theory and Ethical Pragmatism in Bioethics: Value Conflicts in LGBTQ+ Family-Making
17.1 Ideal vs. Nonideal: The Distinction
17.2 Against Ideal Theory
17.2.1 Ideal Theory as Ideology
17.2.2 The Pragmatist Objection to Paradise Island
17.2.3 Pragmatic Nonideal Theory
17.3 Case Study: LGBTQ+ Family-Making and Reproductive Technology
17.3.1 The Case
17.3.2 A Nonideal Pragmatic Approach to Family/Reproductive Ethics
17.4 Conclusion
References
Chapter 18: Huntington’s Disease Testing in a Nonideal World
18.1 Huntington’s Disease
18.2 Genetic Testing for Huntington’s Disease
18.3 Deciding to Test, or Not
18.4 The Role of Genetic Counseling
18.5 Sen’s Approach to Justice
18.6 Accounting for the Lived Experience of HD Patients
18.7 Patients’ Capabilities and the Role of Institutions
18.8 Conclusion
References

Citation preview

Philosophy and Medicine

P&M139

Elizabeth Victor Laura K. Guidry-Grimes   Editors

Applying Nonideal Theory to Bioethics

Living and Dying in a Nonideal World

Philosophy and Medicine Volume 139

Series Editors Søren Holm, The University of Manchester, Manchester, UK Lisa M. Rasmussen, UNC Charlotte, Charlotte, USA Founding Editors H. Tristram Engelhardt, Rice University, Houston, TX, USA† Stuart F. Spicker, Renodo Beach, USA† Editorial Board George Agich, National University of Singapore, Singapore, Singapore 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. More information about this series at http://www.springer.com/series/6414

Elizabeth Victor  •  Laura K. Guidry-Grimes Editors

Applying Nonideal Theory to Bioethics Living and Dying in a Nonideal World

Editors Elizabeth Victor Department of Philosophy William Paterson University Wayne, NJ, USA

Laura K. Guidry-Grimes Department of Medical Humanities and Bioethics University of Arkansas for Medical Sciences Little Rock, AR, USA

ISSN 0376-7418     ISSN 2215-0080 (electronic) Philosophy and Medicine ISBN 978-3-030-72502-0    ISBN 978-3-030-72503-7 (eBook) https://doi.org/10.1007/978-3-030-72503-7 © Springer Nature Switzerland AG 2021 This work is subject to copyright. All rights are reserved 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

Contents

Part I Nonideal Theory 1 Introduction to Nonideal Theory and Its Contribution to Bioethics ����������������������������������������������������������    3 Elizabeth Victor and Laura K. Guidry-Grimes 2 Ideal and Nonideal Theories: The Challenges of Decision-Making in an Imperfect World ������������������������������������������   17 Florencia Luna 3 The Positioning of Moral Agents and Its Relationship to Nonideal Bioethics ������������������������������������������������������������������������������   41 Daniel Beck 4 Critical Theoretical Methodology for Nonideal Contributions to Bioethics������������������������������������������������������������������������������������������������   71 Alex B. Neitzke 5 Conditioning Principles: On Bioethics and the Problem of Ableism ������������������������������������������������������������������   99 Joel Michael Reynolds 6 Bioethics Education and Nonideal Theory��������������������������������������������  119 Nabina Liebow and Kelso Cratsley Part II Applications in Bioethics 7 Individual Moral Responsibility in the Anthropocene ������������������������  145 Madison Powers 8 An Institutional Ethic of Care����������������������������������������������������������������  169 Elizabeth Lanphier 9 Power, Identity, and Liminality in an American Hospital��������������������  195 Anna Gotlib v

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Contents

10 “Being at Home”, White Racism, and Minority Health����������������������  217 Asha Bhandary 11 Black and Sleepless in a Nonideal World����������������������������������������������  235 Keisha Ray 12 Thin or Thick, Real or Ideal: How Thinking Through Fatness Can Help Us See the Dangers of Idealized Conceptions of Patients, Providers, Health, and Disease ������������������������������������������  255 Alison Reiheld 13 Incarceration, Health Harm, and Institutional Epistemic Injustice����������������������������������������������������������������������������������  285 Nancy Arden McHugh and Corina Cleveland 14 A Nonideal Approach to Truthfulness in Carceral Medicine��������������  309 Andrea J. Pitts 15 Dying in Detention: Where Are the Bioethicists?����������������������������������  333 Allison B. Wolf 16 Medical Deportation, Non-Citizen Patients������������������������������������������  357 Leonard Kahn 17 Nonideal Theory and Ethical Pragmatism in Bioethics: Value Conflicts in LGBTQ+ Family-Making����������������������������������������  375 Amanda Roth 18 Huntington’s Disease Testing in a Nonideal World������������������������������  397 Marisola Xhelili Ciaccio and Drew Dumaine

About the Contributors

Daniel  Beck  received his Ph.D. in philosophy in 2016 from Michigan State University, where he specialized in bioethics. He has published on cross-cultural issues in bioethics and the ethics of food consumption. He has also been involved in promoting publicly engaged philosophy, having written for The Prindle Post, an online publication dedicated to the discussion of ethical issues related to current events. Asha  Bhandary  is associate professor in the Department of Philosophy at the University of Iowa. She works in social and political philosophy and ethics, with a focus on feminist ethics, autonomy theory, anti-oppression theory, and distributive justice. She is author of Freedom to care: Liberalism, dependency care, and culture (Routledge, 2020), a monograph that reinterprets the liberal values of fairness, transparency, and autonomy to advance a cross-cultural understanding of distributive justice for caregiving arrangements. Her articles have been published in journals including the Journal of Political Philosophy, Hypatia, Feminist Philosophy Quarterly, Social Theory and Practice, and The Journal of Philosophical Research. She is also co-editor of Caring for Liberalism (forthcoming, Routledge). She is currently working on a monograph about autonomy, egalitarianism, and the bodily effects of racism and microaggressions. Corina Cleveland  is a philosophy master’s student and graduate assistant at Miami University. While gaining her BA in philosophy at Wittenberg University, she was awarded the 2019 Outstanding Scholar Award for her commitment to research and public engagement as well as the Charles J.  Ping Student Community Service Award for her service to youth within the Springfield community. She continues to work with youth who are headed towards, currently in, and/or have recently been released from juvenile detention centers.

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Kelso  Cratsley  is director of graduate studies and professorial lecturer in the Department of Philosophy and Religion at American University. He has held visiting positions at the Kennedy Institute of Ethics at Georgetown University, Concordia University in Montreal, and the University of California, San Diego. His research focuses on issues in bioethics, mental health, and global health. He is the co-editor, with Jennifer Radden, of the recent collection Mental health as public health: Interdisciplinary perspectives on the ethics of prevention (Elsevier, 2019). Drew  Dumaine  holds an M.A. in medical humanities, compassionate care, and bioethics from Stony Brook University. In 2015, she co-founded Engendering Dignity in Philosophy with Marisola Xhelili Ciaccio and Dr. Theresa Tobin as a Ph.D. student in philosophy at Marquette University. Her work is interdisciplinary in nature and focuses on disparities in healthcare and gender. Anna Gotlib  is an associate professor of philosophy at Brooklyn College, CUNY, specializing in feminist bioethics, medical ethics, moral psychology, and the philosophy of law. She has received her Ph.D. in philosophy, with a specialization in medical ethics, from Michigan State University, and a J.D., with a specialization in international law, from Cornell Law School. She serves as a co-editor of IJFAB (International Journal of Feminist Approaches to Bioethics). She has authored a number of publications, appearing in journals such as The Kennedy Institute of Ethics Journal, Journal of Bioethical Inquiry, Journal of Medical Humanities, Hypatia, and others. Gotlib has also presented her work in peer-reviewed conferences, and by invitation, in the USA and abroad. She has also edited two volumes on philosophical issues in moral psychology for Rowman and Littlefield. In January 2020, she was a Fulbright specialist scholar at the University of Iceland. Laura K. Guidry-Grimes  is assistant professor of medical humanities and bioethics at the University of Arkansas for Medical Sciences (UAMS), and she serves as a clinical ethicist at UAMS Medical Center and Arkansas Children’s Hospital. She received her Ph.D. in philosophy from Georgetown University. Her research focuses on psychiatric ethics, vulnerability in clinical settings, the interaction between institutional structures and agency, and quality standards in ethics consultation. She coauthored Basics of Bioethics, Fourth Edition (Routledge, 2020) with Robert M. Veatch. She co-edited Moral expertise: New essays from theoretical and clinical bioethics (Springer, 2018) with Jamie Carlin Watson. She has articles in Hastings Center Report, Journal of Medical Ethics, Nursing Ethics, Journal of Clinical Ethics, Journal of Bioethical Inquiry, International Journal of Feminist Approaches to Bioethics, AMA Journal of Ethics, and others. She has partnered with Elizabeth Victor for almost a decade, ever since she excitedly and mischievously signed them up for a group project in a feminist bioethics course while Dr. Victor was out of town. She has no regrets and feels quite proud of herself for knowing what a terrific collaborative partner Dr. Victor would turn out to be.

About the Contributors

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Leonard  Kahn  is associate professor of philosophy at Loyola University New Orleans and is also chair of the Department. He works primarily in moral theory and applied ethics. He has edited/co-edited three books (Mill on justice, Consequentialism and environmental ethics, and Mill’s ‘On liberty’), and he has published articles in Philosophical Studies; Ethical Theory and Moral Practice; The Journal of Moral Philosophy; Ethics, Policy, and Environment; and Essays in Philosophy as well as Theoretical and Applied Ethics. He has also published book chapters in volumes by Oxford University Press, Springer, Routledge, Brill, Palgrave Macmillan, Vernon, and Broadview. His book reviews (some of which were co-­written with Loyola undergraduates) have appeared in the journals Ethics, Philosophy in Review, and Metapsychology. Elizabeth Lanphier  is on faculty at the Cincinnati Children’s Hospital Medical Center, an assistant professor of philosophy at the University of Cincinnati, and an assistant professor of pediatrics at the University of Cincinnati College of Medicine. She received a master’s degree in narrative medicine from Columbia University and a Ph.D. in philosophy from Vanderbilt University, where she completed a dissertation on complicity and shared responsibility for healthcare within moral communities. Elizabeth previously worked in global health and humanitarian aid program implementation and coordination. Elizabeth’s research interests are in complicity, consent, care, and shared responsibility within social and political philosophy and medical ethics. Nabina Liebow  is the director of American University’s (AU) College of the Arts and Sciences Leadership and Ethical Development Program and she is also a professorial lecturer in the Department of Philosophy and Religion at AU. Her research sits at the intersection between applied ethics, philosophy of race, social philosophy, feminist theory, and moral psychology. Dr. Liebow is passionate about making philosophy and ethics education accessible and exciting to students from all backgrounds. Florencia  Luna  is principal researcher at CONICET (National Scientific and Technological Research Council), Argentina, and director of the bioethics program at FLACSO, Argentina. She is president of the International Association of Bioethics (IAB) (2003–2005) and member of the Steering Committee of the Global Forum on Bioethics in Research (2005–2009) and (2013–2017). Florencia is an expert for the World Health Organization (WHO) and member of the Scientific and Advisory Committee (STAC) of the Department of Tropical Diseases Research (TDR) at WHO (2011–2016). She is member of the Steering Committee of CIOMS working on the International ethical guidelines for biomedical research involving human subjects (2002). She has won the Guggenheim Foundation Fellow (2006) and has been awarded the Konnex Prize in Argentina. Since 2014, she is an external member of the scientific committee of Brocher Foundation (Switzerland). Florencia has been the National Contact Point (NCP) in Social Science and Humanities (SSH) of

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Argentina (National Directorate of International Relations, Ministry of Science, Technology and Productive Innovation) for the European Commission (FP7) (2009–2011). She has published more than 70 articles in peered-­reviewed national and international journals. She is author of several books, including Bioethics and vulnerability: A Latin American view (RODOPY, Amsterdam, 2006). Nancy  Arden  McHugh  is professor and chair of philosophy at Wittenberg University and a fellow of the Hagen Center for Civic and Urban Engagement. She is the author of The limits of knowledge: Generating pragmatist feminist cases for situated knowing (SUNY Press 2015). Nancy teaches philosophy courses in juvenile detention centers and in adult prisons and she also partners with reentry programs for women who were incarcerated. Her website is: http://www. nancyamchugh.org Alex  B.  Neitzke  is assistant professor in the Philosophy Department at Adelphi University in Garden City, New  York. His research examines the philosophical intersections of healthcare ethics, politics, and economics, and seeks to bring contemporary Marxist insights into dialogue with healthcare ethics. Andrea  J.  Pitts  is associate professor of philosophy at the University of North Carolina, Charlotte. Their research interests include critical philosophy of race, feminist philosophy, Latin American and US Latinx philosophy, and critical prison studies. They are co-editor of Beyond Bergson: Examining race and colonialism through the writings of Henri Bergson with Mark Westmoreland (SUNY Press 2019) and Theories of the flesh: Latinx and Latin American feminisms, transformation, and resistance with Mariana Ortega and José M. Medina (Oxford University Press 2020). Madison Powers  is professor of philosophy and Francis J. McNamara, Jr. Chair at Georgetown University and senior research scholar at Kennedy Institute of Ethics. His most recent book with co-author Ruth Faden is Structural injustice: Power, advantage, and human rights (NY: Oxford University Press, 2019). His current research includes a series of essays and a new book project on global justice and environmental sustainability. Keisha Ray  has a doctoral degree in philosophy from the University of Utah. She is an assistant professor at the McGovern Center for Humanities in Ethics at the University of Texas Health Science Center at Houston, McGovern Medical School (UT Medical School). Her work focuses on topics in bioethics with a focus on biomedical enhancement and racial disparities in healthcare and health outcomes between black and white individuals. She has published articles in journals such as Topoi: An International Review of Philosophy and American Journal of Bioethics, where she is also an associate editor and regular contributor to their online blog site. She has also contributed chapters to multiple anthologies.

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Alison  Reiheld  (Ph.D. in philosophy) is associate professor of Philosophy at Southern Illinois University–Edwardsville and formerly director of Women’s Studies at SIUE. She has studied, researched, taught, and rounded in medical ethics for over two decades. Dr. Reiheld’s work is varied but bound together by concerns about power and ethics in contexts ranging from memory to civility to the clinical treatment of a variety of social groups in clinical settings, including general care, obstetrics, and gynecology. She has written on the ethics of memory, conceptual and bioethical issues with miscarriage, anti-obesity public health campaigns, and more. Dr. Reiheld recently completed a series of interviews with transgender folks on their experiences seeking healthcare as part of the Trans Health Ethics Project. Joel Michael Reynolds  is assistant professor of philosophy and disability studies at Georgetown University, a senior research scholar at the Kennedy Institute of Ethics, and core faculty in Georgetown’s Disability Studies Program. He is the author or co-author of 20 peer-reviewed articles and book chapters appearing in venues including The American Journal of Bioethics, The Kennedy Institute of Ethics Journal, The Hastings Center Report, and The AMA Journal of Ethics. He is the author of Ethics after ableism: Disability, pain, and the history of morality, forthcoming with The University of Minnesota Press, and co-editor of The disability bioethics reader, forthcoming with Routledge. He is also the founder and editor of the Journal of Philosophy of Disability. Amanda Roth  is assistant professor of philosophy and women’s and gender studies at SUNY Geneseo. Her past and current research focuses on pragmatism in ethics, reproductive ethics, pregnancy loss, and lgbtq+ family making. She lives in western New York with her 6-year-old daughter. Elizabeth Victor  is associate professor of philosophy and liberal studies at William Paterson University. She received her Ph.D. in philosophy from the University of South Florida. Her research focuses on feminist bioethics, agency theory, the concept of vulnerability in different institutional contexts, and how to address implicit bias in clinical contexts. She is the author of Vulnerability and incarceration: Evaluating protections for prisoners in research (Lexington Books 2019). She has articles in Hastings Center Report, Journal of Medical Ethics, Nursing Ethics, Journal of Clinical Ethics, Journal of Bioethical Inquiry, International Journal of Feminist Approaches to Bioethics, Science and Engineering Ethics, and others. She has partnered with Laura K. Guidry-Grimes for over a decade, and was never so happy as when she was assigned to work with Dr. Guidry-Grimes on a group project in that feminist bioethics course at Georgetown, where she was a visiting researcher. Little did she know what a fantastic collaborative partner and lifelong friend she would have in Dr. Guidry-Grimes.

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About the Contributors

Allison B. Wolf  is associate professor of philosophy at Universidad de los Andes in Bogotá, Colombia, where she teaches political philosophy, philosophy of immigration, and feminist philosophy. Her research focuses on philosophy of immigration and immigration justice in the USA and Latin America, feminist philosophy, and bioethics. Her work has been published in various journals and collections, including Hypatia, Comparative Studies in Asian and Latin American Philosophies, Hispanic/Latino Issues in Philosophy Newsletter of the American Philosophical Association, International Journal of Feminist Approaches to Bioethics, International Journal of Applied Philosophy, Journal of Medical Humanities (with Sonya Charles), Philosophical Inquiry into Pregnancy, Childbirth, and Mothering: Maternal Subjects (with Jennifer Benson), Queer Philosophy: Presentations of the Society of Lesbian and Gay Philosophy, 1998–2008, and the Journal of Global Ethics. Dr. Wolf’s book, Just immigration in the Americas: A feminist account (Rowman & Littlefield International), is due to be published in late summer 2020 and she is currently co-editing an anthology entitled, Incarnating feelings, constructing communities: Experiencing emotions in the Americas through education, violence, and public policy (with Ana María Forero Angel and Catalina González Quintero), under contract with Palgrave Macmillan. Marisola  Xhelili  Ciaccio  is a Ph.D. candidate and lecturer in the Philosophy Department at Marquette University. Her academic research focuses on decolonial criticism of social systems, social identity, and moral psychology. She is also cofounder and co-director of Engendering Dignity in Philosophy, a classroom-based program that brings incarcerated populations together with university faculty, graduate, and undergraduate students to develop collaborative solutions to shared issues in social justice. Marisola has been awarded an Arthur J.  Schmitt Leadership Fellowship for her innovative approaches to diversifying philosophy, a Szymczak Fellowship from the Center for Peacemaking, and a Cyril Smith Travel Fellowship to conduct fieldwork in the Balkans. She currently holds a position as advancement and outreach coordinator at the Center for the Advancement of the Humanities and was recently declared a Carceral Studies fellow with the Center for Urban Research, Teaching, and Outreach.

Part I

Nonideal Theory

Chapter 1

Introduction to Nonideal Theory and Its Contribution to Bioethics Elizabeth Victor and Laura K. Guidry-Grimes

1.1  History and Background: Ideal and Nonideal Theory Nonideal theory developed as a branch of social and political philosophy and was motivated as a response to John Rawls’s idealized theorizing about justice. In his A theory of Justice (1999), Rawls makes idealized assumptions in his approach with the aim of perfecting social institutions. At its core, Rawls’s theory rests on the optimistic picture of human institutions as perfectable, and to the extent that our institutions do not align with this picture of justice, we ought to use the perfect ideal as our aim to guide the way we construct our political and social institutions. Rawls suggests, as part of a long tradition in moral and political philosophy, that we theorize from the position of a detached, impartial observer. The veil of ignorance is meant to put us all on equal footing, without regard to our particular preferences or background or context, in considering what principles of justice ought to determine the proper distribution of justice. An idealized approach thus instructs that we must abstract away from the messy realities, situations of injustice, and histories of oppression and exploitation to establish the ideal theory of justice in the first place. His ideal theory further assumes that institutions and individuals would be willing to comply with the principles of justice and that compliance is set against a backdrop of idealized social conditions. Rawls does not deny that our world is actually far from this ideal, but his view is that an idealized approach is the best way to begin addressing injustices in the actual world.

E. Victor (*) Department of Philosophy, William Paterson University, Wayne, NJ, USA e-mail: [email protected] L. K. Guidry-Grimes Department of Medical Humanities and Bioethics, University of Arkansas for Medical Sciences, Little Rock, AR, USA © Springer Nature Switzerland AG 2021 E. Victor, L. K. Guidry-Grimes (eds.), Applying Nonideal Theory to Bioethics, Philosophy and Medicine 139, https://doi.org/10.1007/978-3-030-72503-7_1

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As David Schmidtz pithily puts it, “the contrast between ideal and nonideal theory is elusive” (2011, 773). Nonideal theory has grown into a robust heterogenous social and political philosophical literature. One of the earliest developments of nonideal theory was the capabilities approaches, made famous by theorists such as Amartya Sen (1999, 2009) and Martha Nussbaum (2000). Capabilities theorists focus on foundational dimensions of well-being and human flourishing and how institutions and the broader society can succeed or fail at setting up the conditions necessary for that flourishing. On this approach, actual freedom to achieve well-­ being given diverse human needs is central for a just society. While theorists differ in how they articulate the different dimensions, the general aim is to give us a metric that cuts across cultural differences, allowing for variation in lived experiences and customs, while still capturing the realities of injustice in a way that allows us to prioritize needs. In the simplest of terms, both Sen and Nussbaum have argued, in different ways, that individuals and social institutions should be focused on alleviating inequalities and addressing injustice as they appear in the real world, and we can best identify and respond to social inequalities by measuring and enabling human capabilities in their particular contexts. Charles Mills approaches the topic of nonideal theory by bringing together insights from critical race theory, Marxism, and feminism. Mills argues that ideal theories share a set of problematic assumptions: idealized social ontology, idealized capacities of agents, silence on oppression, ideal social institutions, idealized cognitive sphere, and strict compliance (2005, 168–9). According to Mills, it is only from one’s indoctrination into a certain way of philosophical thinking that would allow us to buy into the belief that ideal theories are good starting points for moral theory (169). More generally, nonideal theorists argue that theories of perfect justice are not helpful as a starting point for alleviating social inequalities. There are two lines of critique here: (1) that the methodological approach that drives ideal theory is an impossible exercise, and (2) that ideal theories cannot adequately address actual injustices in all of their intertwined, embedded, and embodied realities.1 First, in order to go behind Rawls’s veil of ignorance successfully to reach the original position, we have to theorize from a neutral position that does not bring in any of our biases or predilections that are based in how we happened to grow up, what our race happens to be, what our sex or gender happen to be, what abilities or disabilities we have, etcetera. Rawls’s theory presumes that we can strip away the “natural lottery” as a cognitive exercise so as to derive principles of justice that anyone in society could (and should) accept. One question is whether any human theorist is capable of stripping away these biases and predilections, whether we can step behind a veil of true ignorance. Critics argue that because of how our faculties for reasoning are built and maintained in a social web, we cannot extricate ourselves from that web to be truly impartial reasoners. Thus, the argument goes, the veil of

1  While Mills’s critique specifically targets the theories of John Rawls and Robert Nozick, it can easily be expanded to apply to Kant’s moral and political philosophy, the utilitarian premises put forward by John Stuart Mill and more contemporarily by Peter Singer.

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ignorance is a mythical notion that no one, not even the savviest philosopher, can successfully step behind in a cognitive experiment. Second, a concern with ideal theorizing is that it will always fall short of adequately addressing the realities of injustices. Part of the concern here goes back to the prior concern – that the methodological approach in ideal theory does not allow for the distinctive moral perspectives of those who actually suffer injustice (because these details have to be stripped away in the original position). If those who experience injustice have unique and critical perspectives on what counts as injustice and how injustices should be addressed, then any approach to justice cannot require that we strip away these perspectives. Additionally, ideal theory’s methodology presumes that the best position for deriving principles of justice is from the standpoint of an idealized reasoner and agent. However, someone in this position will not be able to identify with or understand what it is to experience many forms of injustice. Eva Feder Kittay further argues that any methodology that revolves around idealizations will inevitably marginalize certain groups from participation in the moral community. She explains: In their role as placeholders rather than participants, as instruments of an argument rather than subject of discussion, they are invariably misrepresented, and reduced to stereotypes. Thus, while people with ‘normal’ characteristics and capacities enter the theoretical stage as idealized versions of themselves, usually features selves with all and only desirable characteristics, the others bear the weight of that which in our human existence is ‘abjected’ (2009, 130–131).

Kittay famously refutes the bioethical arguments by Jeff McMahan and Peter Singer, arguing the idealized theories undervalue the life of persons with profound cognitive impairments.2 There is another aspect to this concern about the fundamental limitations of ideal theory: distributive justice is separated from other forms of injustice, and public injustice is conceptually divorced from private injustice. Rawls’s aim was to derive the principles of distributive justice in the public realm, but distributive patterns are not isolated from other forms of injustice that pervade both public and private life. Rather, injustices are intertwined, and any theoretical approach that tries to separate them is doomed to fail in a) how it describes the nature of justice and injustice and b) what it offers as a normative framework for achieving justice. Some nonideal theorists start with the observation that some persons, as a result of the moral lottery of life and systems of oppression, will never be an ideal reasoner or moral agent (Card 1996). Moreover, nonideal theories foster conceptual space to explore moral emotions and their role in our social and political lives. For instance, Lisa Tessman discusses the concept of moral residue  – the feelings of guilt that result when one is making a decision with only bad or morally suboptimal alternatives from which to choose (2010). Tessman’s approach, when applied to clinical or other contexts, can help us answer the questions: How do we guide

2  See Chap. 5 in this volume by Joel Michael Reynolds “On the problem of ableism and bioethical theory” for an extended analysis of this point.

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decision making in real-world contexts that often give the decision-maker no morally good choices? After suboptimal decisions are made, how do we help decision-makers and stakeholders work through the emotional aftermath? While this is but one example of a nonideal approach, it illustrates something in what approaches to nonideal theory have in common: they (1) provide a moral framework for individual actors and institutions given that people are imperfect reasoners and moral agents, (2) provide realistic normative guidance and policy recommendations to address injustices in the world we live in, (3) frame the moral community in broad and inclusive terms, and (4) embrace pluralism in approach and flexibility in response to changing conditions and context; that is, our theories should help us address injustices today and future injustices we cannot yet imagine.

1.2  The Nonideal Approach to Bioethics As John Arras notes, “[n]otwithstanding its manifest importance for practical ethics, there has been relatively little self-conscious scholarly work on nonideal justice in theory in […] bioethics” (2016, 11). One noted exception to the lacuna in the bioethics literature is Madison Powers and Ruth Faden’s Social justice: The moral foundations of public health and health policy. Powers and Faden develop a theory of justice for application in public health and health policy. They argue that questions of justice must begin with the unjust social realities in which we find ourselves. The foundation of their account follows in the capabilities tradition of Sen and Nussbaum, identifying six dimension of well-being, including: health (physical and mental functioning with minimal pain and loss of control over one’s body), personal security (absence of assault, and threats), reasoning (ability to gain knowledge about the physical and social world for practical decision-making), respect (recognition of each person’s intrinsic moral worth and dignity), attachment (feeling of belonging, like we have a place in the world; emotionally deep bonding with others), and self-determination (ability to make and pursue options for ourselves) (Powers and Faden 2006, 17–28). With the dimensions of well-being, which often overlap and inform one another, we can establish whether and how social institutions within a given society threaten or enable flourishing, and we can then develop health policies to mitigate the effects of barriers to human flourishing. It is our contention that theorists are answering the call for greater attention to and research on what nonideal theory can bring to bioethics, though this area of scholarship is fertile for more growth. For example, Florencia Luna identifies nonideal theory as a conceptual tool that can help bridge policies permitting lawful abortion access with policies governing conscientious objection in ways that do not harm women already suffering from systemic injustice and violence (2015). In another example, Dónal O’Mathúna turns to nonideal theory as a means to guide practical actions in disaster bioethics and deal with the moral residue agents are left with when choosing from only suboptimal alternatives (2016). In a third example, Candice Delmas and Sean Aas explicitly engage with ideal and nonideal theories in

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their analysis of sexual orientation conversion efforts (2018). In addition to the work that specifically identifies their aims as nonideal theory, there are other instances where authors are utilizing nonideal approaches and do not recognize it as such. In a prior work, we build on the work of Powers and Faden to interrogate the concept of vulnerability and the ways in which medical diagnoses can compound vulnerability (Guidry-Grimes and Victor 2012). Even as we do not specifically identify that Powers and Faden are employing nonideal theory, it is clear from the way they frame the issue and their methodology that it is nonideal from the outset.

1.3  The Future of Nonideal Approach to Bioethics At its core, nonideal theory is an attempt not only to address issues of justice, but it also provides us a lens through which we can articulate our limitations as knowers and reasoners, the ways in which we are relational in our autonomy needs, and the ways in which we are deeply dependent upon institutions and social supports for our agency and identities. Bringing this lens into bioethics means shifting our orientation in our scholarship and our practice. This shift will have implications in how bioethical evaluations are taken up and played out in policies, institutional structures that inform the clinical encounter, and avenues for protection and redress for marginalized and vulnerable populations. It will also allow theorists and researchers to interrogate the status quo, revealing how many standard policies and practices are embedded in social and institutional arrangements that privilege the few or are built on exclusionary norms. In addition, it will allow us to take a much-needed critical look at the distribution of opportunities, goods, access in healthcare and research, and this approach prompts us to take stock of which ethical theories or modes of reasoning and deliberation have dominated analysis and identify their limitations. As nonideal approaches take as their starting point the messy realities we find ourselves in, they provide us with an historical, cultural, and sociological situating of moral problems and issues. Such a starting point brings with it the ability to trace webs of power, identifying who has had power, who has lost it, and how social power and privilege inform the background conditions behind common moral intuitions and conceptions (e.g., what and who counts as rational, autonomous) that often govern bioethical theories, principles, and policy recommendations. By considering the ways in which imperfect systems have established social power and privilege, we can better identify whose voices are prioritized, privileged, silenced, solicited, neglected in the clinical encounter, at various stages of the research process, and in global bioethics. Such privilege also informs who is (and is not) given a “seat” in deliberative procedures, who counts as an expert, whether we attend to the ways in which knowledge is embodied and embedded in social practices, the degree to which we give first person experience and testimony weight, and whether or how widely we value participatory bioethics. Finally, nonideal approaches can help bioethicists reevaluate priorities in research and public health, including when and what conditions coalesce to make someone or a group in acute

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need for healthcare or biomedical intervention. Such priority setting depends upon our collective and expert values, which determine the interventions that are seen as medically indicated, futile, or worth investing in, along with how we negotiate inevitable trade-offs in medicine and public health. From incorporating postcolonial and decolonial perspectives, to embracing feminist approaches to bioethics, queer bioethics, and narrative methodologies, this volume aims to expand the terrain of what has been called nonideal theory. Even when they have not identified themselves as such, these approaches to bioethics have, in fact, been contributing to the work of nonideal theory. While it is important to recognize these traditions as distinct, arising from different methodological commitments and having different aims, what these traditions have in common is their critical methodologies that provide theorists with different ways to articulate issues of injustice. When applied to a bioethical context, the result is a nonideal approach to tackling distinct histories of oppression, power inequities, and epistemic injustice that continue to be under-addressed within the context of clinical research, healthcare access and quality of care, public health campaigns, and global health. This important work is often published outside of bioethics, but it has implications for bioethical theory and practice. For example, Jenna Grant recently applied a postcolonial lens to the Cambodian debate about Pre-Exposure Prophylaxis Trial (2016). She argues that “this shift in the object of ethical concern, from the experimental human subject to the relation between subjects and researchers, illustrates how a postcolonial field of articulation reformulates classical bioethics”, and with this shift, “culturally specific relations of vulnerability and responsibility between foreigners and Cambodians and between Cambodian leaders and Cambodian subjects” (2016). From a decolonial perspective, Andrea J. Pitts combines an analysis “…of structural white supremacy and mass incarceration with an analysis of colonial medicine… [focusing] on Fanon’s writings on medicine and health under conditions of structural oppression to clarify a pattern of violence inflicted upon communities of color and poor communities in the United States, i.e., the communities most affected by mass incarceration” (2015). These are but two examples of the kind of scholarship that can elucidate the conditions of oppression and injustice that ideal approaches to bioethics cannot adequately address. The path forward, and the aim of this volume, is to extend the scholarship of nonideal approaches to bioethics. In doing so, we hope to expand what has been considered nonideal bioethics. As with many emerging fields in philosophy more generally and bioethics in particular, a task of early theorists is to demarcate the boundaries of the discipline. This is a particularly challenging task for nonideal approaches to bioethics, since demarcation is itself a claim to authority that many nonideal theorists will, for good reason, resist. The history of nonideal theory has as its point of reference a turn away from Rawlsian justice, but the future of nonideal theory is ripe with possibilities.

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1.4  Nonideal Theory and Bioethics in the Time of COVID-19 Before outlining the chapters of this volume, we want to highlight the importance of nonideal theory for thinking through the various ethical tensions and debates that have arisen during the COVID-19 pandemic.3 Interestingly, there are even debates about whether we are all Rawlsian at heart at this time (see alternate views presented by Authers 2020 and McKeown 2020). This anthology was nearing production phase during the pandemic, so the included chapters do not include reflections on this public health crisis. Nonideal approaches to public health ethics should be further developed, especially given how bioethicists, activists, and the general public have challenged basic assumptions of public health ethics in just the beginning few months of COVID-19 (which will surely continue in subsequent waves and during the recovery period). A prominent debate concerns equitable allocation of scarce critical care resources (particularly ventilators, intensive care unit beds, and trained health care staff). The priority of “saving more lives and more years of life is a consensus value across expert reports” (Emanuel et al. 2020, 2052). Despite the prominence of this principle in public health ethics for decades, it continues to receive repeated criticisms as the public faces the potential repercussions of such a principle during the COVID-19 pandemic. Saving the most lives and life-years may appear fair if considered in a vacuum or in an idealized society where all infected patients are abstracted from their actual sociohistorical circumstances. In reality, patients enter the emergency department on unequal footing; their projected life-years are largely a function of structural inequities related to health care access and affordability, food security, environmental stressors, safe work conditions, and the like. Cleveland Manchanda, Cheri Couillard, and Karthik Sivashanker argue against the “save the most life-­ years” principle for this reason: This principle is fundamentally identity-blind, and many states have made that fact explicit, believing that barring consideration of race and social factors will yield a fairer outcome. In reality, it will almost certainly ensure the opposite, with devastating effects on disadvantaged communities. The conditions in which people are born, grow, live, work, and age are responsible for most of the unjust, preventable, and systemic differences in outcomes among groups, including differential rates of chronic and life-shortening conditions (2020, 2).

If there is a myopic focus on saving the most lives, then a patient will be deprioritized for scarce resources when they need more resources than other patients. The patient’s need for more resources, however, may be due to pre-existing conditions that have been exacerbated by structural inequities. Any implication that these additional resources for one person are a “waste” hints at ableist disregard

3  The importance of nonideal theory is especially salient in light of the Summer 2020 protests for racial justice in the wake of George Floyd’s death. The contributions by Asha Bhandary (Chap. 10 of this volume) and Keisha Ray (Chap. 11 of this volume) speak to the need for more sustained attention on this topic.

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(Stramondo 2020). In response to these concerns, many bioethicists have argued for expanding criteria for scarce resources and focusing on which groups of people will receive advantages, rather than simply how many lives or life-years are saved (Ballantyne 2020; Biddison et al. 2019). “Fairness weights” have been suggested as a possible corrective for certain patients who would otherwise be deprioritized (Schmidt 2020). Although nonideal theory has not been explicitly invoked in these analyses, these criticisms of the “save the most lives and life-years” principle are in line with nonideal approaches. Attempts at justice-oriented crisis planning will have to take a number of nonideal considerations into account. Humans bring various biases, explicit or implicit, to the development and implementation of crisis plans. No system can have perfect accountability or perfect criteria. Crisis planning has taken place in time-pressured circumstances with inadequate federal support. Triage teams, hospital administrators, clinicians, and ethics committees and clinical ethicists who are handling the crisis on-the-ground do not have time for all of the training that would help minimize errors and bias during this public health disaster. Information and evidence about the novel coronavirus are constantly evolving, making it even more difficult to know whether crisis plans will succeed or approach a just response. There is also the possibility that any given health care professional will not follow the crisis plan due to distress, lack of buy-in, inadequate training, or gaps in process. These conditions pose real-world barriers to achieving anything like real justice. This pandemic has also revealed whose knowledge and priorities rise to the top of a public health crisis in our country (and elsewhere). When the situated knowledge of vulnerable persons is not given a place of central importance, then pandemic responses will tend to prioritize the perspectives, needs, and interests of those who are already advantaged in the community. In allocating emergency funds, for example, government agencies did not prioritize domestic/sexual violence shelters, even though stay-at-home orders foreseeably increased rates of violence in homes. Nursing homes were not prioritized in terms of staff protections, personal protective equipment (PPE) and disinfectant allocations, or COVID-19 testing until they were found to be hotspots of infection. Even while imposing lockdowns and physical distancing mandates, government agencies did not take adequate steps to protect those who could not abide by all of these public health measures (such as persons with disabilities who rely on daily caregivers; patients living in psychiatric hospitals; and essential workers without sick leave, a living wage, or access to PPE). As another example, the possibility of personal ventilator reallocation has been a significant source of concern for the disability community, contributing to distrust of health care institutions during the pandemic, yet this concern has been largely neglected by health care systems and agencies. Crisis plans that allow for personal ventilator reallocation are focused on maximizing equipment instead of the phenomenological importance of these devices for those who depend on them for everyday use (Reynolds et al. 2020). All of the above points (and more) highlight how crucial it is to have proactive engagement from diverse communities before a public health disaster hits. This engagement should bring together different epistemic positions, including those

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who are multiply marginalized and have distinctive insights and moral knowledge that can aid justice in a crisis (Guidry-Grimes et al. 2020). We have learned that we cannot trust abstract principles, formulated outside of a crisis and without community input. The principles for structuring society can easily assume idealized conditions where most people can participate in economic and civic life, but those assumptions are forced to shift when most people are susceptible to infection for that same participation. The viewpoints and lived experiences of the most vulnerable or marginalized can illuminate demands of justice that get lost in attempts to make judgments behind a veil of ignorance.

1.5  Contents of the Volume The volume is divided into two main parts. The first is focused on philosophically unpacking nonideal theory as an approach in bioethics. The second offers applications of nonideal theory in environmental ethics, healthcare ethics, public heath ethics, and genetic ethics. Florencia Luna opens Part I with a balanced view of ideal theory and nonideal theory, arguing that there is no singular theory that can guide real world cases and policies. She offers criteria for choosing an ideal or nonideal approach and then applies them to bioethical problems in reproduction to show how her criteria can be helpful in reasoning among cases within a global context. In the third chapter, Daniel Beck argues for a feminist naturalized moral epistemology as a promising methodology to avoid idealizing assumptions in moral philosophy and applied ethics. A successful methodology has to account for how moral agents are positioned – that is, how we are constrained by social, cultural, psychological, and historical factors. He analyzes a naturalized common morality that is responsive to on-the-ground realities in bioethics. The fourth chapter offers a Marx-informed nonideal framework for bioethics. Alex B.  Neitzke argues for understanding health care structurally, as a set of productive practices within a larger systematic whole of capitalistic production, to diagnose systemic dysfunctions in health care’s material production. He refers to these dysfunctions as social pathologies of health care, which can be an illuminative concept for bioethics. In the fifth chapter, Joel Michael Reynolds shows how normative theorizing in bioethics is underwritten by conditioning principles, which explicitly or implicitly determine the role of other ethical principles. Ableism is such a conditioning principle, making true justice as fairness unattainable in biomedical practice and bioethical reasoning. He focuses on idealized moral theorizing embedded in Singer’s utilitarianism and argues that ideal theory exacerbates the effects of conditioning principles like ableism, resulting in hermeneutical injustice. Nabina Liebow and Kelso Cratsley discuss the benefits of nonideal theory for medical school education in the final chapter of the first section of the volume. They illustrate their points by suggesting how schools should incorporate units on “race

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and medicine” and “stigma and coercion in mental health.” They argue that nonideal theory has the power to inform ethical engagement in clinical training and practice. Part II begins with a chapter from Madison Powers, who analyzes individual responsibility for environmentally-mediated “group harms.” He details the pressing bioethical problems in climate change and agricultural practices globally, and he argues that standard methods for approaching these problems tend to be idealizing. He offers a nonideal approach that can better guide how to address these pressing collective problems. In the eighth chapter, Elizabeth Lanphier applies care ethics to an analysis of health care institutions, arguing for a nonideal institutional care ethic. She argues that a nonideal approach brings care and justice into conversation with one another without assuming the transcendence of one over the other. This framework is then used to reason through cases of transplant patients. Anna Gotlib highlights the intense vulnerability and power differentials of patients in the ninth chapter. She argues that nonideal approaches are necessary to bring proper attention to how illness and hospitalization can harm and alienate patients, particularly in terms of their identity, self-trust, and voice. She recommends an institutional shift toward nonideal, narratively-grounded approaches to the overall well-being of patients. In the tenth chapter, Asha Bhandary explores the state of “being at home” – feeling safe and at ease in one’s context – in relation to minority health and health disparities. She argues that ideal approaches to social equality fail to identify how bodies are affected by racism and sexism. She brings together multiple theories that are critical of this idealization, and she shows how a nonideal theoretical approach in bioethics is well-suited to evaluate the ramification of bodily damage incurred by stress and microaggressions. Bhandary’s work has clear implications for global bioethics. The eleventh chapter, written by Keisha Ray, analyzes therapeutic advice to induce sleep that ultimately neglect the social, legal, cultural, and economic causes of racial disparities in sleep. Medical recommendations for sleep hygiene operate under idealized assumptions, or “glittering ideals,” addressing sleeplessness under ideal circumstances under which only a small group of privileged people live. She argues that nonideal theory provides a more useful framework for developing solutions to racial disparities in sleep and health generally. Alison Reiheld critically investigates approaches to fatness in health care and bioethics in the twelfth chapter. She reveals the insidious effects of healthism, an idealized notion that situates health, disease, and their solutions at the level of the individual. She instead argues for a nonideal approach rooted in intersubjectivity, empiricism, inclusivity, contextual specificity, and reflexivity. Her theoretical framework sheds light on failures in public health campaigns both in the United States and globally related to medicalized obesity. Nancy Arden  McHugh and Corina Cleveland analyze epistemic injustice and failed attempts at health care in prison medical wards in the thirteenth chapter. They provide a nonideal philosophical framework for understanding institutional epistemic injustice. Prison health workers take on the harm mentality of the carceral

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system, they argue, which means engaging with their patients as prisoners rather than as patients. They suggest epistemic strategies for addressing this issue for people who are ill, aging, and dying in prison. In the fourteenth chapter, Andrea J. Pitts focuses on the virtue of veracity in the context of health care services in prisons, jails, and detention facilities. They contend that the bioethics literature largely ignores the structural barriers to health care that impact veracity in the provision of health care, drawing on Assata Shakur’s political autobiography in their analysis. They argue that a nonideal lens allows bioethicists and health care workers to attend to the structural barriers within and beyond prison walls. In the next chapter, Allison B. Wolf inspects deaths in detention facilities as a result of U.S. policies against immigrants in recent years. Building on the work of Shelly Wilcox, she argues that nonideal theory makes it clear the special obligations bioethicists have to condemn these deaths and to promote immigration justice in the United States, which begins by recognizing the role the United States has in creating and perpetuating unjust living conditions of people globally. Leonard Kahn investigates the ethics of medical deportation in the sixteenth chapter. Medical deportation occurs when an undocumented patient is returned to their country of origin when ill or injured. He argues that nonideal theory is necessary for a proper analysis of this decision, and he offers a contractualist framework to delineate permissible and impermissible forms of medical deportation. He shows that real-world cases of ethically permissible medical deportation are rare at best, and there is little prospect of this situation actually changing. The seventeenth chapter, written by Amanda Roth, delves into a case study of LGBTQ+ persons making use of reproductive technology to build a family. She offers a pragmatist approach rooted in nonideal theory, which centers the situatedness of LGBTQ+ people in a heteronormative and cisnormative society in the evaluation of this reproductive technology. LGBTQ+ people and families face practical conflicts in their attempts to live out their values in the social world as they find it, which is underscored in Roth’s analysis. While Roth’s chapter has a U.S. focus, her analysis and conclusions can easily be applied to many countries health policies regarding LGBTQ+ access to reproductive technologies. In the final chapter, Marisola Xhelili Ciaccio and Drew Dumaine analyze testing for Huntington’s Disease. Drawing on Amartya Sen’s work, they argue for a nonideal approach to improving genetic counseling and testing for this patient population. They suggest that though practitioners and institutions often create protocols and testing guidelines with the best interests of patients in mind, they nonetheless fail to account for the exclusionary mechanisms and obstacles that result from idealizations in health care and the U.S. health insurance system. Acknowledgements  The editors and authors are grateful to Nancy Berlinger, Autumn Fiester, Micah Hester, and Jamie Carlin Watson for their valuable perspectives as expert reviewers. We must also extend our thanks to Lisa Rasmussen, Floor Oosting, Nagaraj Paramasivam, and Christopher Wilby for their continual support from this volume’s early inception through the challenges brought on by the COVID-19 pandemic and then finally to publication. The editors

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would also like to thank two anonymous reviewers for their feedback on a draft of the volume. Finally, this research was supported (in part) by a Summer Stipend from the Research Center for the Humanities and Social Sciences at William Paterson University.

References Arras, John. 2016. Theory and bioethics. In The Stanford encyclopedia of philosophy, ed. Edward N.  Zalta. https://plato.stanford.edu/archives/win2016/entries/theory-­bioethics/. Accessed 7 Mar 2018. Authers, John. 2020. How Coronavirus is shaking up the moral universe. Bloomberg. https://www. bloomberg.com/opinion/articles/2020-­03-­29/coronavirus-­pandemic-­puts-­moral-­philosophy-­ to-­the-­test?cmpid=BBD040220_AUT&utm_medium=email&utm_source=newsletter&utm_ term=200402&utm_campaign=authers&fbclid=IwAR0ah31SxO4NePqusgX7Ipwvixx0zLJ QbA_gFROUgcqJ8NPAsX2e0nRMK2w. Accessed 31 May 2020. Ballantyne, Angela. 2020. ICU triage: How many lives or whose lives? Journal of Medical Ethics Blog. https://blogs.bmj.com/medical-­ethics/2020/04/07/icu-­triage-­how-­many-­lives-­or-­whose-­ lives. Accessed 31 May 2020. Card, Claudia. 1996. The unnatural lottery: Character and moral luck. Philadelphia: Temple University Press. Biddison, Daugherty, E.  Lee, Ruth Faden, Howard S.  Gwon, Darren P.  Mareiniss, Alan C.  Regenberg, Monica Schoch-Spana, Jack Schwartz, and Eric S.  Toner. 2019. Too many patients….A framework to guide statewide allocation of scarce mechanical ventilation during disasters. Chest 155 (4): 848–854. Delmas, Candice, and Sean Aas. 2018. Sexual reorientation in ideal and non-ideal theory. The Journal of Political Philosophy online first. https://doi.org/10.1111/jopp.12159. Emanuel, Ezekiel J., Govind Persad, Ross Upshur, Beatriz Thome, Michael Parker, Aaron Glickman, Cathy Zhang, Connor Boyle, Maxwell Smith, and James P. Phillips. 2020. Fair allocation of scarce medical resources in the time of Covid-19. New England Journal of Medicine 382: 2049–2055. Grant, Jenna M. 2016. From subjects to relations: Bioethics and the articulation of postcolonial politics in the Cambodia pre-exposure prophylaxis rial. Social Studies of Science 46 (2): 236–258. https://doi.org/10.1177/0306312716632617. Guidry-Grimes, Laura, and Elizabeth Victor. 2012. Vulnerabilities compounded by social institutions. International Journal of Feminist Approaches to Bioethics 5 (2): 126–146. Guidry-Grimes, Laura, Katie Savin, Joseph A.  Stramondo, Joel Michael Reynolds, Marina Tsaplina, Teresa Blankmeyer Burke, Angela Ballantyne, Eva Feder Kittay, Devan Stahl, Jackie Leach Scully, Rosemarie Garland-Thomson, Anita Tarzian, Doron Dorfman, and Joseph J. Fins. 2020. Disability rights as a necessary framework for crisis standards of care and the future of health care. Hastings Center Report 50 (3): 28–32. Kittay, Eva Feder. 2009. The ethics of philosophizing: Ideal theory and the exclusion of people with severe cognitive disabilities. In Feminist ethics and social and political philosophy: Theorizing the non-ideal, ed. Lisa Tessman, 121–146. Dordrecht: Springer. https://doi. org/10.1007/978-­1-­4020-­6841-­6_8. Luna, Florencia. 2015. Medical ethics and more: Ideal theories, non-ideal theories, and conscientious objection. Journal of Medical Ethics 41: 129–133. https://doi.org/10.1136/ medethics-­2014-­102295. Manchanda, Cleveland, Cheri Couillard, and Karthik Sivashanker. 2020. Inequity in crisis standards of care. The New England Journal of Medicine 383: e16. https://doi.org/10.1056/ NEJMp2011359.

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McKeown, Maeve. 2020. We are not all Rawlsians now. Medium. https://medium.com/@maeve. mckeown/we-­are-­not-­all-­rawlsians-­now-­6cbb1b1d8028. Accessed 31 May 2020. Mills, Charles W. 2005. “Ideal theory” as ideology. Hypatia 20 (3): 165–184. Nussbaum, Martha. 2000. Women and human development: The capabilities approach. Cambridge, MA: Cambridge University Press. O’Mathúna, Dónal. 2016. Ideal and nonideal moral theory for disaster bioethics. Human Affairs: Postdisciplinary Humanities & Social Sciences Quarterly 26: 8–17. Pitts, Andrea J. 2015. White supremacy, mass incarceration, and clinical medicine: A critical analysis of U.S. correctional healthcare. Radical Philosophy Review 18 (2): 267–285. https://doi. org/10.5840/radphilrev201412827. Powers, Madison, and Ruth Faden. 2006. Social justice: The moral foundations of public health and health policy. New York: Oxford University Press. Rawls, John. 1999, rev. A theory of justice. Cambridge, MA: Harvard University Press. Reynolds, Joel M., Laura Guidry-Grimes, and Katie Savin. 2020. Against personal ventilator reallocation. Cambridge Quarterly of Healthcare Ethics 30 (2): 1–13. Schmidt, Harald. 2020. The way we ration ventilators is biased. New York Times. https://www. nytimes.com/2020/04/15/opinion/covid-­ventilator-­rationing-­blacks.html. Accessed 31 May 2020. Schmidtz, David. 2011. Nonideal theory: What it is and what it needs to be. Ethics 121: 772–796. Sen, Amartya. 1999. Development as freedom. New York: Oxford University Press. ———. 2009. The idea of justice. Cambridge, MA: Harvard University Press. Stramondo, Joseph. 2020. Disability, likelihood of survival, and inefficiency amidst pandemic. AJOB Blog. http://www.bioethics.net/2020/04/disability-­likelihood-­of-­survival-­and-­ inefficiency-­amidst-­pandemic. Accessed 31 May 2020. Tessman, Lisa. 2010. Idealizing morality. Hypatia: A Journal of Feminist Philosophy 25 (4): 797–824.

Chapter 2

Ideal and Nonideal Theories: The Challenges of Decision-Making in an Imperfect World Florencia Luna

2.1  Introduction We live in a nonideal world: people fall short of complying with their obligations and respecting basic human rights. Oppression, corruption and prejudice are widespread. Because of this, ideal theories cannot always help with the challenges our life poses. Yet, sometimes, the “second best” option or the morally suboptimal alternative not only leaves moral residues and emotional aftermaths (Tessman 2010) but prevents better options. Since Rawls’s distinction of what nonideal theories (NITs) are, some political philosophers, bioethicists and theorists have been trying to develop and use NITs to solve our nonideal problems. In addition, sometimes ideal theories (ITs) or more idealized theories1 seem to be useful, too. If we consider this variety of possibilities seriously, then we should ask several questions: When should we use NITs and when should we opt for ITs? Are there appropriate criteria for making these kinds of decisions? What are valid uses or justifications for NITs? Is there a way to guide decision-making in real world contexts? This paper will try to answer the above questions. It has two parts. The first is theoretical. I make some distinctions to present the theoretical arena and debate. I will then specify how I think ITs and NITs relate to each other. Finally, I will address a yet to be explored field and will suggest five criteria to help in the decision-making process to select between NITs and ITs.

1  As I will explain in the paper, I will also use the terminology “more or less idealized” theories since I will defend a continuum between ideal and nonideal theories.

F. Luna (*) CONICET-FLACSO, Buenos Aires, Argentina e-mail: [email protected] © Springer Nature Switzerland AG 2021 E. Victor, L. K. Guidry-Grimes (eds.), Applying Nonideal Theory to Bioethics, Philosophy and Medicine 139, https://doi.org/10.1007/978-3-030-72503-7_2

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The second part introduces two cases and applies the decision-making process developed in the first part. In one case I argue that we ought to follow NIT, while we should follow IT in the other. I focus on reproductive rights-related problems. The first case examines conscientious objection in the case of legal abortion in Argentina. The second case analyzes research with pregnant women in countries where abortion is illegal. The cases show the practical value of combining NIT and IT to address real world concerns.

2.2  Ideal and NonIdeal Theories 2.2.1  Conceptual Distinctions In recent years, political philosophers have questioned the methodology to develop normative prescriptions (Sen 2006, 2009; Mills 2005). Much current work was found defective because it was of little if any practical help. Such awareness showed the way to a methodological turn (Valentini 2009, 2012): from Rawls as the “paradigmatic model” to the search for other alternatives, among them, NITs.2 Elucidating what ITs and NITs consist of is not straightforward. There are several ways to consider what they are, as well as differentiating between distinct proposals. Some positions tend to blur the possibility of a categorical distinction between ITs and NITs and speak of a “territory of a multidimensional continuum”.3 I will present Valentini’s proposal (2012) as it provides a clear vision of some of the issues at stake. Valentini explains that, in a first sense, IT can be contemplated as a full-compliance theory and NIT can be understood as a partial compliance theory. The debate centers on the question of what duties and obligations apply to us in situations of partial-compliance as opposed to situations of full compliance. IT can also be understood as a utopian or idealistic theory and NIT as a realistic theory. On this second reading, the debate focuses on the question of whether feasibility considerations should constrain normative political theorizing and, if so, what sorts of feasibility constraints should matter.4 The third way of understanding IT indicates 2  All the debate of ITs and NITs – at least initially – seemed to focus on Rawls and he appeared to be the target of many of these analyses (see Valentini 2012). This paper is not exegetical. I will consider Rawls’s position only when it is relevant to my argument or when it illustrates a point. 3  Hamlin and Stemplowska (2012, 48-49) hold this position, though they distinguish four broad approaches: (1) full compliance and partial compliance; (2) idealization and abstraction; (3) fact sensitivity and fact-insensitivity and (4) perfect justice and local improvement of justice. They make a categorical distinction between the theory of ideals (identification and elucidation of ideals) and the continuum of ITs and NITs that are identified with institutional designs. 4  One of the debates examines the degree of “idealism or realism” needed. For the utopian position of G.A. Cohen (2003, 2008) principles of justice are altogether independent of factual constraints versus Rawls’s more realistic analysis (principles of justice are developed in response to human condition, moderate scarcity, and limited altruism (Rawls 1999, 22)). However, other realist’s positions exist, such as Waldron’s (1999), that consider Rawls to be too idealized for failing to consider

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that it is an end-state theory and that NIT may be thought of as a transitional theory. The debate centers on whether a normative political theory should aim at identifying an ideal of societal perfection or whether it should focus on transitional improvements without necessarily determining what the optimum is. While IT sets out a long-term goal for institutional reform, NIT asks how this long-term goal might be achieved, or worked toward, usually in gradual steps (Valentini 2012). As can be inferred, each understanding of IT and NIT has different aims and scope; it is important to note that such differences exist because we can understand the distinct ways in which we can interpret and apply an IT or an NIT. Yet, we should also acknowledge that these are not radically different areas and that some of their debates relate to each other. In this paper, I will focus mainly on some of the concerns that correspond to realistic and transitional NITs.

2.2.2  Ideal Versus NonIdeal Why have ITs been criticized? There have been several objections, as was mentioned. One of the “classic” critics is Amartya Sen. Sen speaks of transcendental approaches – mostly represented by Rawls – versus comparative approaches.5 Sen criticizes transcendental approaches and targets Rawls’s theory for taking that approach. Sen explains that transcendental approaches are not feasible and that there may be no reasoned agreement on the nature of the “just society”. He criticizes the possibility of a unanimous agreement on principles with a complete ordering. However, Rawls does not appear to go so far. He states: “[f]or until the ideal is identified, at least in outline…nonideal theory lacks an objective, an aim, by reference to which its queries can be answered” (Rawls 1999, 90 [my emphasis]). Thus, he does not posit the need for a complete description or identification of this ideal.6 He makes a priority claim which entails other commitments.7 I do agree, nonetheless, with Sen’s main point: we do not need a full-blown, complete description of the perfect society or a set of fully ordered principles agreed upon by all. Yet, I also agree with Rawls that we need an IT “at least in outline” and that it has a relevant role (as I will argue below).8 However, I do not endorse the priority claim. The design of principles need not presuppose any controversial claims about the reasonable disagreement about justice. Other political realists include power structures (Williams 2005; Geuss 2008). Regarding feasibility concerns, Gilabert (2017) provides a systematic approach to the relationship between feasibility and justice. 5  I will use ideal theory (IT) and transcendental approach (TA) indistinctively, as well as nonideal theory (NIT) and comparative approach (CA). Robeyns (2008) also considers Sen’s terminology to be akin to IT and NIT. 6  Gilabert explains Rawls never says that he has shown that his three principles are better than all conceivable alternatives (Gilabert 2008. See note 4, page 8). 7  Whether Sen’s analysis of Rawls is correct or not goes beyond this paper. 8  This is also the position of Robeyns (2008, 344).

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existence of a timeless and independent moral truth. The proposal I favor uses a method that consists of an attempt to “systematize” our considered judgments in reflective equilibrium.9 I believe that reflective equilibrium is very relevant to bioethics as we work and evaluate real world cases and situations that may challenge our intuitions, conceptual tools or basic principles. Within this framework – as we will see – an idealized theory or set of idealized principles can still be relevant to our political, practical and strategic thinking. The second criticism Sen considers is the redundancy charge: even if a perfect society could be identified, it would be of no use in the comparative assessment. It will not be necessary, or sufficient, or even contributory. The transcendental approach will not be helpful at all. Sen is right that a transcendental approach may not be sufficient. No reasonable defender of a transcendental approach will argue that it alone provides a solution to all comparative issues (Gilabert 2012, 10). However the charge of not being useful or helpful seems too strong. Gilabert provides several arguments against Sen’s claims. I will focus on three that I think may help us in our further inquiry. Gilabert defends the heuristic significance of exemplars and explains that in the comparison of alternatives, even if we do not know how exactly to judge the comparative distance from one alternative to another from the perfect specimen, the inquiry about how alternatives relate to the transcendental approach will shape our comparative investigation in interesting and relevant ways. We might be able to make a partial ordering or to rule out some options. Another very interesting argument is that a transcendental approach is a way to critique the status quo. He argues that a theory of justice should help us identify both long-term and short-term processes of justice enhancement. Focusing only on manifest or patent injustice may lead to a failure to inquire further to identify important but not yet perceived forms of injustice. We may miss the fact that feasibility for political action is open to temporal variations (what is not feasible now may become feasible in the future if we take certain steps). The search for just societies10 would keep us open to the expansion of our epistemic and practical grasp of further justice enhancement – not to surrender to injustices and enable ourselves to fight (Gilabert 2012, 15). Finally, the third argument speaks of the inspiration and motivation significance. Gilabert recognizes that his arguments fall short of showing that picturing a transcendental approach is strictly necessary, but it does show that the transcendental approach is not irrelevant and can contribute to the normative development of

9  “The method of reflective equilibrium consists in working back and forth among our considered judgments (some say our “intuitions”), about particular instances or cases, the principles or rules that we believe govern them, and the theoretical considerations that we believe bear on accepting these considered judgments, principles or rules, revising any of these elements wherever necessary in order to achieve an acceptable coherence among them” (Daniels 1996). Reflective equilibrium is endorsed by several theorists, such as Valentini (2012, 6), and Gilabert (2012, 2017). 10  Gilabert speaks of a perfectly just society (p. 15). Although he does not adhere to the need for a perfectly just society, he still refers to it. I do not think we need such a strong position.

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comparative approaches of feasible alternatives (2012, 17). This is enough for our purpose; we do not need stronger commitments. I endorse a pluralistic view where we can find more idealized proposals, ITs or transcendental approaches that may serve on certain occasions and NITs or comparative approaches that are applicable in other cases. For example, some NITS may be critical and provide a better empirical account of oppressive conditions, e.g., offering better action-guidance prescriptions. Other NITs can provide rectificatory justice (Pateman and Mills 2007, 94). The IT does not always prevail, nor does the second best or the realistic alternative. I believe that the opposition between ideal theories (IT) and nonideal theories (NIT) is artificial.11 For example, Hamlin and Stemplowska speak of continuous variables: “Compliance, idealization, abstraction, fact sensitivity and improved realization of a value are all matters of degree and of ‘appropriateness’ […] any sharp categorical distinction between ideal and nonideal theories that focuses on a single dimension seems implausible at best.” (2012, 49 [my emphasis]).12 In addition, I think ITs are relevant in certain cases and have a role. Moreover, I think we should avoid dichotomies and reductionisms where only one alternative (IT or NIT) is valid. I agree with most of Charles Mills’s (2005) criticisms, especially regarding the failure by mainstream ethics and political philosophy to acknowledge structures of oppression and exclusion and that bad idealizations should be avoided13 (as I will argue in the next section of my analysis, along with my analyses of the cases in Part II). However, I do not think we should reject a priori all ITs. Both ITs and NITs can have a place. Moreover, I think that Mills, who is so critical of ITs,14 accepts a continuum of theories.15 I believe that the relevant issue for Mills (and for me) is to be critical of the ideals, principles, and conceptual tools we accept and of the consequences they may have. This fits perfectly well if we also endorse a reflective equilibrium methodology that not only provides dynamism but also fosters a critical evaluation of our conceptual tools.  I follow Gilabert (2012).  Robeyns also argues for a continuum from ITs (2008) (as the ultimate goal) to NITs. She claims “IT and NIT tell us what ideals we are striving for, how different principles of justice should be weighed against each other, how justice needs to be balanced against other values and how to deal with instances of widespread noncompliance” (p. 349). 13  Mills explains that IT as an approach will utilize some or all of the following concepts and assumptions as its basic apparatus: an idealized social ontology (characterization of the human beings), idealized capacities (completely unrealistic capacities attributed), silence on oppression (historic oppression and its legacy in the present or current ongoing oppression), ideal social institutions (family, the economic structure, the legal system), an idealized cognitive sphere (a general social transparency will be presumed with cognitive as limited to biased of self-interest…) and strict compliance (Mills 2005, 168–169). 14  I believe he is so critical because he is thinking of mainstream ethics or political philosophy where IT’s assumptions are uncritically accepted and their principles have absolute priority. 15  For example, he says: “Nor does the simple appeal to an ideal (say, the picture of an ideally just society) necessarily make the theory ideal, since nonideal theory can and does appeal to an ideal also.” (Mills 2005, 171). Thus, at least tacitly, Mills accepts different levels of idealization in the NITs and that NITs can use ideals. So there are no “pure” NITs; they have different idealizations and assumptions too. 11 12

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This process allows us to scrutinize and filter bad idealizations or principles that may be problematic. Thus, I agree with Gilabert that the real issue is not whether we should select NIT instead of IT, but rather how we can select both in an integrated way (2012, note 17, 22). Let me add, to do so we need to include some criteria to help in the decision-making, as I will argue in Sect. 2.5.

2.2.3  Good and Bad Idealizations In the previous section we have seen that a useful role for ITs or more idealized theories is acceptable. However, there may still be strong objections not just to IT but to the use of idealizations. Robeyns specifies that, in the literature, IT is often confused with theories based on idealizing assumptions, and, in particular, on idealizations that are bad idealizations. She examines what they are, what their role in ITs is, and how we can distinguish between good and bad idealizations (2008, 352). She argues that “[…] the role of ideal theory is limited, perhaps more so than generally acknowledged in the literature, and that these limitations should be much more explicitly discussed by ideal theorists” (2008, 342). She defends that IT plays a role, but that bad idealizing assumptions should be filtered.16 I agree with her analysis. Robeyns explains that idealizations by definition are simplifications and that they often depict a much better reality than actually exists. Most or even all ideal theories employ idealizations. One of their functions is to keep the complexity of the theory within manageable boundaries (as it reduces the number of parameters the theory has to deal with). Another function of idealizations lies in the goal of IT itself: to model desirable properties of the ideally just society (for example, we would not want people to act on prejudices and stereotypes).17 For Robeyns we can assume away certain injustices and their causes because at the ideal level these injustices should simply not occur (2008, 354). Yet, why is there so much resistance to idealizations? In addition to an adversion to counterfactual thinking and highly abstract reasoning, she says that the transition from IT to NIT is everything but straightforward. Therefore, the more the IT has been built upon idealizations, the farther away it will be to offering clear guidance for the nonideal world. She argues that the problem is not that idealizations are not acceptable at the ideal level. The problem is how we can deal with the idealization when moving to the nonideal level. In addition, there is the issue of bad idealizations. Bad idealizations cannot be theoretically justified. They ignore certain forms of injustice that need to be theorized (aspects that are more relevant to some groups in society than to others). One example is the idealization that assumes persons are fully independent instead of  She also specifies that the academic profession should correct the current academic bias toward ideal theory and do much more theoretical work to bridge the gap between IT and NIT (Robeyns 2008, 342). 17  Robeyns explains that Dworkin uses this strategy (Robeyns 2008, 354). 16

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including in the notion of personhood the need of receiving and providing care. “The fact of human dependence on care is like the fact of human mortality: both are facts that no serious comprehensive theory can ignore” (2008, 358). Thus, Robeyns rightly claims that this idealization works to the advantage of those who are benefiting from the current unjust arrangements. This is also one of the main criticisms Mills points out (i.e., the contribution to perpetuate illicit group privileges) (Mills 2005, 166) and with which I completely agree. Robeyns explains that care is not equally distributed among all individuals: women provide much more care than men (both paid and unpaid), and that among the paid caregivers, immigrants, lower class women and women of color are overrepresented (2008, 359). This creates an ideological bias in the theory (bad idealizations are biased against the groups who are arguably treated unjustly), even if the author of the theory had no intention of doing so. In the same way, some ideal social institutions (the family, the economic structure, the legal system, etc.) can be deeply problematic and such idealizations should be avoided when they work to further the privilege of some already privileged groups (Mills 2005, 169). List and Valentini also ask whether a theory contains the “right”18 idealizations given its purpose, but they propose a different analysis.19 They specify that some degree of idealization may play an important and justified heuristic role (O’Neill 1996, Chap. 2; Farrelly 2007). In addition, List and Valentini distinguish three possible levels (loci) at which idealizations can occur and they evaluate some of them as being more problematic than others.20 From a different perspective, even Mills admits that the use of ideals is permissible: “Now what distinguishes ideal theory is not merely the use of ideals, since obviously nonideal theory can and will use ideals also (certainly it will appeal to the moral ideals, if it may be more dubious about the value of invoking idealized human capacities). What distinguishes ideal theory is the reliance on idealization to the  Regarding List and Valentini’s comment, Nancy Jecker in a personal communication suggested replacing right for a better descriptor such as a “good fit” with the assumption that more than one idealization might fit and things can fit better or worse. 19  They distinguish between a theory that is abstract (it is silent on an issue), and a theory that is idealized (if it entails some simplifying or limiting falsehood about that issue (List and Valentini 2016, 19–20). I will not enter the debate between idealization and abstraction that goes back to O’Neill (1987). 20  These loci are: i) the theory itself; ii) the conditions of application of the theory prescriptions (i.e., “if such and such conditions hold, then such and such follows”); iii) the justification of the theory. They provide two examples from Rawls’s A theory of justice. They argue that the often criticized “idealized” assumption of full compliance is not made within the theory itself, but occurs as part of the justification that Rawls offers for the theory. It is one of the assumptions made by the parties in the original-position thought experiment. So, it is an idealization at level three. And, they examine Rawls’s assumption that a society that exists under favorable historical and social conditions operates at the level of the condition of application of the theory’s prescription, which corresponds to level two. List and Valentini consider the first level to be the most problematic. The other two may make the theories less relevant to the real world because their prescriptions may not hold in the second case and they will be insufficiently justified in the third case. However, they do not pose the kind of threat level one does (2016, 20–21). 18

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exclusion, or at least minimization, of the actual.” (Mills 2005, 168, [my emphasis]). Lisa Tessman, who also endorses the work and value of NITs (2010, 810), advocates for the presence of ideals in NITs. She distinguishes between two kinds of ideals. The first type of ideal is action-guiding and attainable; that is, feasible ideals. Tessman argues that the second kinds of ideals are unattainable but worthy.21 They should be included after critical consideration; they can be worthy ideals. She criticizes NITs that focus exclusively on issuing appropriate action guidance and asks for a place for truly worthy ideals. Thus, “bad idealizations” are problematic but this does not mean all idealizations or worthy ideals are to be dismissed.

2.2.4  Different Views of Ideal Theory We can have stronger or milder versions about the value or usefulness of ITs. For example, for Simmons, without an IT that says i) what counts as permissible and ii) what counts as success (i.e., full justice/approaching full justice), we cannot establish whether our transitional recommendations fulfill these requirements (2010, 34). Alternatively, as Robeyns explains, IT plays a limited role, and she provides a rather graphic image. She pictures IT as a mythical Paradise Island where we would ideally like to be, but that does not tell us how to get closer to the island. We do not know whether it can be reached and no one has ever set foot on the island. Yet, since it is our dream to go there, reaching Paradise Island is our ultimate goal. It gives us the direction in which we should be moving (2008, 345). She then clarifies that NIT will get us closer to the island, with justice-enhancement design and implementation. NIT will offer the theoretical foundations to figure out what to do in order to move closer to that perfectly just society (2008, 345). Robeyns characterizes NITs as having two main functions:22 (1) comparisons between different social states to enable us to make and evaluate which one is more just than the other and (2) guidance in our actions to move closer to the ideal society. Nevertheless, she acknowledges that the second function may be more difficult to achieve given the gap between ideal and nonideal theories (2008, 355–358).23 We also have milder versions. Let us consider Gilabert’s arguments against the redundancy charge as a mild proposal. Gilabert speaks of the heuristic significance of exemplars – their help in partial ordering or in discarding alternatives. He also

 Tessman states that she is aware of the shift in the line between what is attainable and what is unattainable. She recognizes the value in differentiating options according to gradations of probability, according to their possibility/impossibility, and according to whether they are individually attainable or only attainable if there is a collectivity of cooperating agents. 22  She criticizes Rawls’s proposal regarding some of NITs’ conceptualization. She does not accept just war or punishment as relevant to NIT and claims that some of NITs’ issues are not sufficiently stressed, such as whether the principles of justice should be adapted or how to weight different principles of justice (Robeyns 2008, 346–347). 23  See Amanda Roth’s contribution to this volume for a broader discussion. 21

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explains that it is a way to criticize the status quo. IT helps to identify long-term processes of justice enhancement. Finally, he claims ITs can be an inspiration and can have motivation significance. From my standpoint, we can work with this mild proposal. As I will argue, we can have a pluralistic approach and consider a continuum from more ITs to NITs. Finally, given this situation, is it better to stay on the nearby sub-optimal island or should we try to continue – through stormy and uncertain waters – to Paradise Island? What should the decision-making process be? And if we cannot set foot on Paradise Island, we can at least try to take some pictures, draw maps with some other visual help, and then return better equipped to do the job to become more paradise-like in the muck of real life. Can we opt for priority rules, algorithms or specific procedures? Or are these kinds of theoretical artifacts useless, too narrow, confining or restricting of thought?

2.2.5  T  he Decision-Making Process: Requirements and Deliberation Elsewhere, I considered four criteria or requirements to compare and select one NIT from among various NIT candidates (Luna 2015, 132):24 • • • •

R1: The proposal should be politically possible; R2: The proposal should be likely to be effective; R3: The proposal should be morally permissible;25 R4: Among proposals to be compared, select the one where the most grievous injustices are dealt with or are seriously considered.26

Are these requirements a valid basis for comparing ITs and NITs? I believe they are. The first two requirements are directly related to feasibility as normally different constraints or challenges in the real world make us turn to NITs. We will need to consider different types of feasibility challenges.27 We should evaluate different kinds of constraints, from soft or contingent constraints that may range from cultural challenges, scientific findings or societal values to hard or unalterable constraints that reflect laws of logic or physics. There may also be transition constraints related to time, etc. How should we then factor in feasibility? These issues open us up to complex considerations. Is unfeasibility an obstacle we have to surrender to? How are we going to deal with money, power, and social standing, among other constraints?

 In this version, I will reorder them as I think they can be better explained, given the current analysis. 25  I interpreted Rawls as suggesting these three requirements. (Rawls 1999, sect 2, 39, 69). 26  The fourth requirement was taken from Simmons (2010, 18–19). 27  See Erman and Möller (2019 for a more exhaustive analysis of feasibility. 24

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I think we can bring in Gilabert’s proposal of a dynamic approach to the relationship between justice and feasibility.28 We can apply it when having to select different NITs or ITs. He says that when demanding principles clash with soft rather than hard constraints, an appropriate response is to use our political imagination to envisage alternative ways to fulfill principles in different contexts and recognize dynamic duties to expand our ability to fulfill these principles over time.29 Dynamic duties – unlike normal duties – do not focus on achieving certain desirable outcomes within prevailing circumstances. The point is to change those circumstances so that desirable outcomes become achievable (Gilabert 2017, 119). Dynamic duties direct a change, often an expansion of an agent’s power to bring about certain outcomes. He also proposes a deliberative reflective equilibrium as the methodology to adopt.30 It is this epistemic back and forth that determines what moral guidance to accept. The next two requirements are normative. The third requirement should take into account that not every action-guidance provided by a NIT is acceptable, even if it is a second best (Tessman 2010) or a feasible alternative. We should check what are our assumptions: whether our ideals or idealizations are appropriate and are not ignoring some relevant moral feature. We should be able to justify which conceptual tools we are using, and we should carefully consider their consequences in the real world. I propose a deliberative process: there are no rules or algorithms that can fit all situations and provide a clear-cut answer. Through this process, for example, a rule, principle, strategy or policy that generates more oppression or increases the systemic disadvantage to an already disadvantaged group should be avoided. The fourth requirement should be applied to the comparison among different alternatives. Thus, if we have NIT1, NIT2 and IT we should prefer the one that takes care of the most grievous injustices or if these cannot be met, it considers seriously how to handle them in a proper way. This requirement again allows us to critically examine bad idealizations that are blind to oppression or that assume ideal institutions without considering, among others, systematic disadvantages of women, the poor or racial minorities.

 Gilabert applies his dynamic approach to what he considers the three dimensions of justice. He explains how normative desirability and feasibility interact at different levels of deliberation about the pursuit of social justice. He wants to identify demands that are both normatively desirable and feasible for each of the dimensions of justice. These dimensions involve normative claims about: DI: Core principles including evaluative and prescriptive principles; DII: Institutions and social practices; DIII: Processes of transformation (2017, 106). 29  Gilabert claims that we can retain idealism about principles and realism about feasibility and combine them (Gilabert 2017, 95–96). 30  Gilabert proposes a deliberative reflective equilibrium. For him, there is a logical sequence of the overall conception of justice (the final product has to exhibit logical sequence) and there is an epistemic back and forth that determines what to accept as the content of each dimension of justice. Gilabert raises the point that his account differs from Rawls’s. He speaks of three dimensions of justice (core principles/institutions and social practices/processes of transformation). He envisions progression from more abstract to more specific prescriptive judgments. (Gilabert 2017, 110–111, note 23). 28

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In sum, I argue that the four rough criteria proposed in my previous article, plus the dynamic approach depicted by Gilabert, should be considered when selecting not only from among NITs (Luna 2015) but also between NITs and ITs. Yet, do we need other requirements to complement the previous ones? If we think IT plays a heuristic role that can help us not to accept the status quo or to have an inspirational impetus, we can incorporate a requirement inspired in path dependence. I think it may reinforce consistence in our decision-making process. The idea behind this is that while many NITs identify short-term reforms that seriously bear in mind the feasibility constraints that bind here and now, we should also consider long-term proposals that may become relevant if feasibility constraints relax or change. This evaluation should be done in such a way that proposed reforms or actions do not contradict or make it difficult to achieve the desired normative goals. However, if we are going to give up certain gains in the short term for the uncertain promise of larger gains in the end, we should be cautious. Hamlin and Stemplowska argue for a genuine dialogue between ITs and NITs and not just posit IT as a prerequisite.31 That is, we should not assume a priority claim of ITs or consider them a trump card. I find the idea of a dialogue quite interesting and fitting with the proposal of a deliberative reflective equilibrium that I endorse. Nonetheless, we should be careful not to back up actions or proposals that may hamper attaining long-term goals. Thus, the next requirement can say: • R5: The proposal should appraise or consider long-term goals in order to avoid endorsing strong obstacles to them when we try to move toward those goals. As was said, I believe that a key role of IT is to help us check for consistency and coherence in our advocacy of institutional and policy reforms and to keep in mind long-term goals. However, note that in the selection and evaluation of ITs and NITs we will have to filter out bad idealizations or assumptions. Thus this fifth requirement will consider how to make choices and tradeoffs between different domains of partial justice and temporal tradeoffs in costs and benefits and long-term goals. The above are merely five rough requirements to consider. They should not be taken in a static way or as an algorithm to be applied. I think the process should be dynamic. We should consider the nonideal world with its patterns of oppression, injustice, partial compliance, etc. We should also evaluate that actions or proposals that at first are not possible may become so later. Thus – as was argued above – I think we should include the dynamic approach to our selection of ITs or NITs; we should use our political imagination and dynamic duties, as well as a deliberative reflective equilibrium in order to select the better proposal.

 See Hamlin and Stemplowska (2012, 59). I acknowledge that I used the priority assumption Rawls proposed in my previous article (Luna 2015). However, I now believe it should not function as an “automatic clause” or be given priority.

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2.3  Ideal and Nonideal in Bioethics Several issues arise regarding ITs and NITs in bioethics and some clarifications should be made. As bioethicists, we ask if (1) we should work on an IT or NIT. For example, should I spend my time thinking about what would constitute a just healthcare system under the assumption that we will have full compliance, etc., or should I spend my time thinking about what individual physicians should do against the backdrop of an unjust healthcare system? (2) when presented with a specific ethical problem, should I turn to ideal or nonideal theory for guidance?32 The first point goes beyond this article and I will focus on the second one. A third important issue to clarify is the kind of conceptual element we are working with. In bioethics, institutional policy reforms, regulations or even case resolutions may instantiate “more or less ideal theories”. That is, regulations or policies exemplify or assume theories that may be more or less ideal. This means that in bioethics we do not usually deal with “pure” ITs.33 However, I want to stress the relationship of bioethics (for example, in the resolution of cases, in policy making, etc.) with ITs and NITs or with more idealized theories. Thus, in this paper I will consider an ideal theory in bioethics as those regulations or policies that follow rules or principles that would be required in an ideal world (though it will not be a “pure IT”), while an NIT in bioethics will adjust such rules to the real world limits and will seriously consider feasibility constraints. In what follows, I will evaluate which theory (IT or NIT) current real world policies assume and which should be endorsed in specific examples involving reproductive rights in nonideal contexts. I will consider two cases and examine whether we should turn to ITs or NITs for guidance. The first was presented in an earlier article on conscientious objection in situations of legally permitted abortions in Argentina (Luna 2015). In that article I argued for the need to use NITs and, as was explained in the previous section, I used four requirements in order to select the best NIT from among the three presented in said article. The second case considers the situation of doing clinical research with pregnant women in countries where abortion for malformation of the fetus or, what is sometimes called “eugenic abortion”, is not legally allowed and/or there is no access to such kinds of abortions. Contrary to what was proposed in the first case, I want to show how this other situation should be solved with an IT or a more idealized theory.

 I thank Joe Millum for this comment.  For example, Robeyns considers action design and implementation as part of the nonideal work (2008, 343).

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2.3.1  Case 1: Conscientious Objection and Abortion In “Medical ethics and more: Ideal theories, nonideal theories and conscientious objection” (Luna 2015), I briefly explain how NITs can contribute to policy design in nonideal circumstances. I argue that NITs help conceptualize problems faced in the context of non-compliance and scarcity in a more realistic way (Luna 2015, 129). I consider the situation of legal abortion in cases of rape and that of conscientious objection (CO) in Argentina. In this country legal abortions are frequently denied and one of the causes is an alleged CO. In December 2020, when this article was already written, a bill was passed legalising abortion, however, many of the points discussed in this paper still occur in many other Latin American countries for similar issues. In the ideal world (and I am considering countries like the UK or France to be ideal worlds in the sense of this policy34) all interests and rights are respected and protected: those of the woman and those of the physician involved. A scheme of an IT on CO involves the following prescriptions: 1. Permissible abortions should be provided; 2. CO should be accepted and respected. The IT of CO assumes: (a) that reproductive rights are respected, (b) that services are accessible and (c) that CO is an exception; but those assumptions did not hold in Argentina. Regarding (a) and (b) Argentina, like many Latin American countries, does not provide minimum sexual and reproductive healthcare. There is a long record of denial of and disrespect for sexual and reproductive rights hindering permissible and safe abortions (Casas Becerra 2019). So, mostly unsafe abortions carried out illegally take place with the harms and costs falling on women. In addition, there is almost no infrastructure that deals with legal abortions.35 If we consider (c), we can see that in recent years it has become clear that permissible abortions should be provided by the public system.36 In addition to individual reluctance, gynecological services practice “institutional objections” where it is mainly the Chief of Gynecology that imposes such position and no physician is allowed to practice an abortion (2015, 130). CO and institutional objections37 are used as weapons to disregard women’s rights. In many cases, the same physicians that object to performing abortions in public hospitals actually carry them out in their private offices for high fees. At the same time the practice of CO has been

 Again in bioethics we work with the actual world which obviously is not ideal, but we can select some situations (in this case countries) which are “more ideal” in certain respects. 35  The practice of providing legal abortions hardly exists (particularly in some provinces of Argentina). 36  This has been the product of the long standing and difficult fight of different groups of feminists. See Bergallo (2014). 37  Whether this terminology is accurate is a topic of discussion that goes beyond this paper. 34

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thoroughly abused (it is not the product of sincere feelings and it is used as a tool to refuse to follow the few exceptions in the law that allowed for abortions). Given this situation, if CO were respected, we could anticipate an even greater lack of resources as it is part of a strategy to reject the provision of legal abortions: fewer and fewer physicians would be available to provide the service. Furthermore, those willing to carry them out were overburdened, they could also be stigmatized, etc. The consequence was that more poor women – already at risk and facing the terrible situation of a pregnancy resulting from rape – turned to unsafe illegal abortions, which increased risk of harm or death for them, victimizing the victim. The attempt to impose perfect justice’s rule was likely to backfire, making the worst off even worse off. Hence, it did not follow that we could simply apply the IT (Luna 2015, 130). In Mills’s words, this IT relies on idealizations to the exclusion or at least marginalization of the actual (Mills 2005, 168). In such a situation, I suggested three possible NIT candidates that propose different solutions.38 Then, by using the first four requirements presented in the previous section, I singled out the preferred option. I called the selected choice “the careful ruler/administrator”.39 It admits referral as a compromise position, asks for a proper regulation of the CO and sets some important limits. For example, the careful ruler or administrator asks for quotas of CO. This is very important in public hospitals as COs may not be eligible for gynecological wards, or in the case of rural or small hospitals, where general physicians provide most services. This means that some conscientious objectors that want to exercise their objection cannot do so. They may be required to practice another specialty or look for another job or hospital that still has openings for COs. The careful ruler or administrator asks for public registries to prevent double standards on the provision of abortions as a private business while denying them as a public service. In addition, the careful ruler or administrator requires transparent and public registries so women know which provider to access. It can also ask conscientious objectors to make their views public (in order to avoid fake CO). Let us consider whether the IT can be followed. First, we could argue that following the IT cannot be politically feasible (R1): conservative groups were so powerful that women’s preferences and rights were not respected and they couldn’t obtain legal abortions. The status quo was so strong that not even non-debatable legal abortions were delivered.  The NIT candidates are: A) the silent referral: it argues for an institutional and silent policy. CO should be reported to the Director of the institution without constraints and IO is accepted. The status quo is not bothered. The only requirement is to have a plan to solve the situation. B) The careful ruler: neither the silent referral nor IO is accepted. It admits a referral as a compromise position and asks for a proper regulation of the CO (i.e., quotas of CO, etc.) so it sets some limits on the CO and C) temporary prohibition: IO and CO should be forbidden in the public system. Note that the three candidates argue for different public policies that cannot be endorsed at the same time. (Luna 2015, 130–131). I selected the second NIT that sets limits, seeks transparency and respects both CO and the woman. 39  Although I use careful ruler in the article published in 2015, it may be more accurate to speak of a careful administrator. I thank Ignacio Mastroleo for this suggestion. 38

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Trying to follow the IT would not respect R2 as it was not effective (in the end, the service will not be provided). Some very conservative provinces did not provide any abortion service. Such provinces only respected CO while women continued to be ignored. In extreme cases, groups militating against abortion “occupied” the entrance of the hospital and threatened women and their families. For example, in Tucuman in February of  2019, an eleven-year-old girl  was raped by her grandmother’s partner and was denied an abortion. The hospital delayed the practice for nearly 2 months because all the physicians in the public hospital were COs. Even though there was an important civil movement asking to respect the rights of this girl, it was impossible to change the dynamic and physicians performed a C-section against the will of the girl and her family to protect the fetus (López Fabián 2019).40 This example demonstrates how unrealistic it is to think that the IT can be an effective guide for action. In addition, it illustrates the prevalent oppression economically disenfranchised women suffer. Regarding R4, which asks that “the most grievous injustices are to be dealt with before less adverse ones”, we can argue that if we follow IT, this is not respected, either. Women were at the losing end of power inequalities41 in this instance, and their rights were considered secondary to those of the physicians. On the other hand, the NIT defendant could argue that physicians have the monopoly over certain practices and their decisions to become physicians are voluntary. They have a privileged role, so society can and should set rules and limits on their CO (Luna 2015, 130). Physicians with COs can choose a different medical specialization other than gynecology; they can work in the private sector or choose a hospital that has openings for COs as its quota is not yet filled. In short, they have several options. Thus, even if they may not always be able to exercise their CO, it seems it is morally permissible (R3). Moreover, allowing the IT would have generated even more oppression and would have compound wrongs or harms to an already disenfranchised group. The unjust and oppressive conditions of women should be factored into this equation. We cannot ignore this background conditions and pretend women’s autonomy and rights will be respected, or continue with unrealistic and idealized assumptions. It seems clear that the IT cannot be followed; the imperfect, actual conditions resist the idealized assumptions. A NIT setting some limits and safeguards would seem to be the second best and possible action-guiding prescription. It was politically possible (R1) and effective (R2) as it respected both women’s’ and physician’s rights – even if it set limits on physicians. It was a morally permissible option (R3). Regarding R4, the NIT dealt with the injustices of the most vulnerable in society, protecting the women that needed it the most. Finally, considering R5 the NIT defendant could argue that even if it set some limits on physicians, the long-term goal was to respect the rights of both parties. If we enforced this policy, it would have  set a path toward a more  Note the level of violence against women that these kinds of actions imply.  Moreover, in these cases, poorer women are generally the ones that need the help of the public system, women with middle- or high-socioeconomic standing find safe abortions through illegal routes.

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respectful attitude toward the two parties. It would have helped build an infrastructure for the provision of legal abortions, as they could  begin to be provided in a systematic way. The NIT policy proposed does not raise obstacles for a future IT if the current situation changes. Note also that if the situation changes and the country has better infrastructure and more respect for these women and their rights, we can change to the IT. This is part of the spirit of the dynamic approach suggested in the first part. The selection of the NIT is temporary as the situation may change as did the law (though the condition and challenges to women have not been modified yet). So the NIT still holds.

2.3.2  Case 2: Research with Pregnant Women Following the thalidomide case42 in the 1960s, very little pharmacological research has been done with pregnant women. In recent years, the need for research with this population has been recognized.43 However, there is still much resistance on the part of sponsors and researchers due to the possibility of harming the fetus or of triggering costly lawsuits. During pregnancy, women are nonetheless prescribed drugs, but these have not been tested adequately or assure a high degree of evidence.44 The need to conduct this research has been underscored and has been endorsed by ethical guidelines, such as the CIOMS-WHO Guidelines. Guideline 19 refers to pregnant women.45 It points out the need to promote this kind of research and that it should be initiated only after careful consideration of the best available data. It is also explicit about some safeguards, such as the informed consent from women recruited to participate in research. It considers the potential benefit to the pregnant woman or to her fetus, and also ways to approach research interventions with no potential benefit. Interestingly, the guideline ends claiming: “As a general rule, health related research involving pregnant women that has the potential for harm to the fetus should be conducted only in settings where women can be guaranteed access to a safe, timely and legal abortion. In the event that participation in the  This drug was given to pregnant women in the 1960s without conducting prior research. Many children were born with serious problems and malformations in their limbs. Another example is DES or diestilestibestrol, a synthetic estrogen used in 1940–1970 to prevent spontaneous abortions ( h t t p s : / / w w w. c a n c e r. g ov / e s p a n o l / c a n c e r / c a u s a s - p r eve n c i o n / r i e s g o / h o r m o n a s / hoja-informativa-des) 43  The responsible inclusion of pregnant women in research was the focus of the Second Wave Initiative, which began at Georgetown University in 2009 (Heyrana et al. 2018). 44  More than 80% of pregnant women are prescribed drugs that have not been studied in pregnancy (Ayad and Constantine 2015). Of the 213 new pharmaceuticals receiving FDA approval from 2003 to 2012, only 5% included data from pregnant women (US Department of Health and Human Services 2018). 45  This guideline is very important because it clearly sets the ethical elements that should be considered when doing research with pregnant persons. In addition, being a guideline endorsed the WHO gives it a global scope, thus it has had a lot of impact internationally. 42

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research makes the pregnancy unwanted.” Guideline 19 – while encouraging this research  – sets the requirements for good research conditions, respectful of the value of science, researchers and women. We can consider this Guideline instantiating an ideal theory or a highly ideal theory. Though it considers the nonideal world where abortion is not provided, it recommends a rule to follow in line with the one that should be applied in the ideal world (i.e., it protects the woman and avoids exposing her to unsafe abortions). I will focus on this last claim as it sets a restriction on the nonideal world. It requires abstention from research that may have teratogenic effects or malformations in the fetus in countries where abortion is illegal.46 This restriction was applicable to Argentina and is still applicable to most of the Latin American countries where these kinds of abortions are not legal. While there may be several types of NITs, the one I am depicting here is that of the scientific optimist. They believe in the importance and benefits of research. Thus barriers to research are often perceived as problematic. For example in the case of using a placebo as comparator, the NIT defenders will argue in favor while the IT followers, perceived as more “principle based”, will ask to stop research.47 We can imagine rival NIT theorist who question this IT policy as overly protective and who argue that research can be conducted despite some risks, provided there is fully informed consent. The main reasons the NIT defendants may provide are: (a) not doing such research precludes pregnant women who would have participated in research from potential benefit, and (b) this stance slows scientific progress. NIT proposers may argue that clinical trials are carried out with the aim of maximizing benefits and they are designed carefully to try to minimize risks. They can defend their position by pointing out that a fundamental condition is that women participants are freely consenting and that if this is so, they know what they are exposed to and accept it. They can have a disabled child if they want and NIT defendants can claim that ultimately these women can – as most women in these countries do – have an illegal abortion. What the rival NIT theorists will have to accept is that only trials with the potential to benefit (the women or fetuses) can be done. For this NIT, potentially beneficial trials should be accepted – even if they can expose women and their fetuses to teratogenic effects – in countries where abortion is illegal and unsafe. Let us consider a case. Pregnancy and HIV “share” a risk factor: unprotected intercourse that places women at risk of infection. Negotiation of condom use is

 That is, where abortion for fetal malformations, for problems affecting women’s health and on demand are illegal or non-accessible. 47  In fact, when trials with AZT and placebo to avoid HIV/AIDS perinatal transmission in Africa were denounced, guidelines (i.e. Declaration of Helsinki) that forbid placebo were revised. Angell (1997), Lurie and Wolfe (1997) who condemned these placebo trials were perceived as too idealistic and non-pragmatic (setting barriers to an already difficult and complex activity). Reconstructing this debate goes beyond the scope of this article but two sides emerged one more idealistic and the other more pragmatic upholding scientific standards. 46

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more difficult for some women.48 Additionally, when women acquire acute HIV infection during pregnancy, rates of mother-to-child transmission are significantly higher than prior to pregnancy.49 Oral pre-exposure profilaxis (PrEP) has been shown to prevent HIV infection in high-risk populations, yet little is known about its use in pregnant populations. However, these data are changing. Taking a pill daily has proven highly preventive. The NIT defendants can argue for the inclusion of at-risk pregnant women in these trials. Thus, for the sake of argument, let us assume that the drug to be tested has the possibility of producing teratogenic effects and that there are no reliable data yet. That is, it was not tested before and/or there is no strong evidence of its effects on the fetus. If presented with this case, the IT defendants will refuse to conduct these trials in most Latin American countries. They will argue that despite their importance, these trials should first be conducted in countries where abortion is safe and accessible. However, the IT position is not against “all” research. IT defendants posit this clause as a requirement, as a “general rule”, so only some very specific and well-justified exceptions are acceptable. In the case of Latin America, Zika research can be an exception as this research cannot be done in other parts of the world and it especially affects fetuses in Latin American countries.50 Not doing any research will leave this population completely unprotected. Thus, the IT, while accepting some very well-justified trials, will undoubtedly be more restrictive than the NIT, hampering research. Let us consider the requirements presented in the previous section in order to determine whether the IT or the NIT should be followed. Regarding feasibility constraints, the NIT defendants would argue that R2 questions how effective this NIT is likely to be. Their answer will be that it can be effective. Conducting these trials will provide the knowledge they sought. They will advance science and, in principle, benefit all pregnant women (whether the findings are positive or negative) and those particular women in the trial. However, they will have to admit that they will benefit those particular women only if the drug proves to be safe and effective in the trial; if the drug has teratogenic effects, it may harm the women and their fetuses. R1 asks if this NIT is politically possible. It seems it is. These countries operate without regard for the sexual and reproductive rights of women. As was just argued, even permissible and legal abortions are not performed so this is part of the standard practice. This NIT is like many other policies that these countries accept. For example, prenatal tests51 exist. They are legal and accepted and may help couples know how their fetus is progressing. In the case that these tests show malformations or  Particularly in some low and middle income countries where men may be more reluctant to use condoms. 49  In a recent study of nearly 10,000 women in South Africa, among those seroconverted during pregnancy 11% passed the disease on to their children compared to 2% who were seropositive prior to pregnancy (PHASES 2017). 50  In Africa, the same reasoning may apply to Ebola as no fetuses survived maternal Ebola and a higher proportion of pregnant-Ebola-infected women died (Heyrana et al. 2018). 51  This is the case in Argentina and many other countries. 48

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serious problems, some couples will accept this fact and will be better prepared for a difficult delivery, but most of the couples  – referred by their physicians  – will secretly and illegally end their pregnancies. This is common knowledge and there is no political problem. It is part of the accepted standard practice.52 As was explained, there is extensive disregard for women’s sexual and reproductive rights. In the case of these pregnancy trials, advocates of this NIT will argue: we may benefit some of the women and only those that may suffer teratogenic effects or that may be so distraught that they do not want to continue the pregnancy will be treated unfairly or will be harmed. Those women will do what most women in these countries do: depending on their economic resources they will seek an illegal and –in many casesunsafe abortion. In the case of a PrEP trial the scientific rationale will be to begin with populations that are the most exposed to the virus, so this research will start with women at risk like drug addicts, sex workers, etc. They are the ones that most need this preventative treatment. These women will probably lack economic resources and thus end up having unsafe abortions. Yet, the NIT defendant will argue that this does not present any problem: illegal abortions are the only feasible solution. R3 asks if this NIT is morally permissible. Although this kind of research should not be morally permissible for many; counter to this trend, our NIT defendant will argue that informed consent is of the upmost importance. It should be done carefully; it should provide all the information, including the possibilities of harming the fetus during the research. If women without any coercion consent, they should be respected. It is their autonomous choice. NIT defendants may, in addition, argue that this research offers these women the possibility of HIV prevention (in other cases they may offer cures for illnesses, help for their fetuses, benefits they would not have enjoyed had they not participated in the research). The NIT defendant will argue for and stress the possibility of benefit. It is not that they are discriminating against these women but on the contrary they are trying to help these already disenfranchised women that may – in addition to their difficult life – be exposed to the HIV/AIDS virus. They may also argue that this is the baseline situation, as occurs in other countries with ill-functioning healthcare services that still allow for research. In these countries the baseline is no safe or legal abortion, thus while there may still be risks, this may be preferable to no research being performed. Our IT defendants will argue that this NIT cannot be accepted as morally permissible. In this case, the risk baseline seems to be too high and above the normative proposal; it is not a minimal risk or a minor increase above minimal risk. An unsafe and illegal abortion may harm or kill the woman, or in some extreme situations send her to prison. Critics of the NIT approach can also argue that informed consent has never been the only safeguard to be considered in research ethics and cannot be taken as the sole or most important criterion. No matter how careful and serious  In Argentina, this has gone on for decades without any problem. A similar situation happens with assisted reproductive technologies and abortions carried out in clinics when women have multiple pregnancies (Luna 2018).

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researchers are, a clinical trial poses uncertainties. As was shown in the previous sections, the alleged “autonomy” can be questioned as a bad idealization. The NIT defendant seems to ignore the women’s lack of resources, the oppression and the pressure they may feel by participating in the trial. These will be women at high risk of HIV infection, such as drug addicts or sex workers, who have very few options to care for themselves. Note that in this case it is the NIT defendant that is using bad idealizations. The IT defendant can also argue for the need for change and the importance of respecting sexual and reproductive rights. They can provide reasons for this aspirational goal of equality and respect for sexual and reproductive rights. Thus the IT defendants will take side with the participants in research while the NIT followers will underscore the value of science and research and their possible benefits. Can we consider other criteria that may help us decide which proposal to choose? R4 requires that the most grievous injustices are dealt with before less grievous ones. Are we respecting R4 with our NIT? Even if we accept R1’s (politically possible) reasoning, it seems that the most grievous injustice is the non-respect for women’s reproductive rights: submitting one of these women to an unsafe and illegal abortion that may end in harm, morbidity or mortality of the woman. This is unacceptable, especially if this research can be conducted in places where reproductive rights are respected and pregnant women can safely participate. In addition, the IT follower will counter b) (progress of science) in the NIT defense does not follow. Science can be advanced with the knowledge gained from other, better protected participants (in countries where abortions can be safely carried out). So, if we have to choose between two groups to test a drug, following the principle of the minimization of risks, we should select the one that exposes the population to less risk, if the information obtained is the same, even though, regarding argument a), the IT defendant will have to accept that those particular women will not have the opportunity to participate in the trial.53 IT defendants may argue that there might be other ways to obtain the drugs.54 Finally, let us examine R5: Does the NIT proposal – even if it upholds the value or research and science – consider the long-term goals? It seems our NIT is only considering the short-term proposal: just the set of women that would have participated who would effectively be denied the possibility of benefit (real benefit is not certain). An argument the IT defendant may bring up is to examine the message sent. This can be analyzed by considering two main issues: (i) the research activity itself and (ii) reproductive rights. Regarding the former, it seems we can conduct trials in these countries under conditions that are unacceptable in other countries. The IT defendant can refer to a double standard in research. These trials may even be perceived as a sort of self-interest or reflect the “greediness” of researchers doing this

 And if the drug proves beneficial, they will not enjoy the benefits.  Through innovative practice or non-validated practice if first positive data are obtained. See Holzer and Mastroleo (2019). I thank Mastroleo for this suggestion.

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kind of research because they profit from it. Moreover, as some Latin American countries are reluctant to carry out some clinical trials, this policy may backfire by pointing out unethical performances that are needlessly done in countries without adequate protections. It may give reasons to adopt a very strong position against research. It may even  help to bring overly protective laws that can hinder good research (which has already happened in Latin America).55 Thus, strategically, it is a quite challenging policy that may have serious potential backlash on research. Regarding (ii) reproductive rights and gender equity, doing this research speaks to a general disrespect for women. The IT defendant can argue that allowing this kind of trials reinforces the status quo regarding reproductive rights. Note that there is an issue regarding the acceptance or not of the “status quo”. From a theoretical point of view both IT and NIT can challenge the statuts quo. A position, such as the one from which Mills argues, against the status quo (pointing out assumptions or silence on oppression (see note 13)); but from an ideal standpoint, ideals for a better society can be defended. These views also belong to the utopian side that Gilabert pointed out (remember Gilabert’s defense of ITs against Sen). In this case, the IT defendants will be able to be more critical of the status quo because this particular NIT mostly focused on science/scientific advancement. So, the IT defendant will argue that acceptance of these trials will prolong a history of violations of reproductive rights. If the harms of endorsing the NIT policy are not acknowledged, people will continue to deny and ignore the situation that millions of women are experiencing. Opposing these trials, instead, may help reveal the widespread disrespect for reproductive rights; this has to be modified so that good clinical trials can be held in the region (note that this is quite idealistic and a long term goal, as it will not change in the short run). Researchers may argue for the need to change the law. Note that in Argentina, in 2018, a bill to change the abortion law was presented in the Lower Chamber but was subsequently rejected by the Senate. Gynecologists, geneticists, as well as lawyers and other lay people, advocated for and against the bill in the audiences held by both Chambers. Researchers can also advocate for adequate abortion laws. Respectful reproductive laws will allow Latin American countries to participate in the same kind of research as other developed countries (with high standards of protections). The latter arguments consider long-term goals and reject the status quo. Thus, in this case it may be better to select the IT that restricts this kind of research, at least temporarily, and seeks to install a real protection of reproductive health and an ethical and accepted way to do research. For the NIT defendants requesting this kind of actions regarding reproductive rights goes beyond what researchers should do. This case shows how a more ideal position may be acceptable, but also that not all NITs are valid. Some may be too partial and focused on a few feasibility  Note that Costa Rica had forbidden research for several years. Costa Rica approves regulations to restart medical research on humans. (n.d.). Retrieved June 12, 2019, from The Tico Times Costa Rica website: https://ticotimes.net/2015/07/22/costa-rica-approves-regulation-restart-biomedicalresearch-humans. See also Mora (2017).

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constraints. As Lisa Tessman (2010, 797) points out, they may be only action-guiding nonideal theories  – too strongly adapted to the  nonideal  – and though they might be the best possible, still they might be unacceptable. We can have several NITs and not all of them will have the same value. This can also be the case with ITs that use bad idealizations too or ignore the background conditions. Thus there is no automatic answer regarding which of these theories is the best. We will have to analyze them case by case, to examine if they are using bad idealizations, if they are considering the most grievous injustices, what the context in play is, if worthy ideals (in Tessman’s words) are included, etc.

2.4  Conclusion This article is of an exploratory nature. With this paper I illuminate the relationship between ideal and nonideal theory and bioethics, and some of the challenges we face when interacting in the real world. This paper endorses a reflective equilibrium methodology. This reflective equilibrium exercise works in the interaction of theoretical aspects with concrete cases. I argue that there is no one kind of theory (IT or NIT) that can guide all real world cases or policies. We have to evaluate what the IT and the NIT entail, and how the five requirements I propose fit. That is, that the proposal should be politically possible (R1); that it should be likely to be effective (R2), that it should be morally permissible (R3), that we should select the one where the most grievous injustices are dealt with or seriously considered (R4), and that there should be a consideration of long term goals (R5). We have to examine how different idealizations operate and which to filter (especially if there are bad idealizations), analyze what is the relation with the status quo (as challenging the status quo could be done by either ITs or NITs), and how the nonideal world interacts with them. With these different tools we may be able to choose between an IT or more idealized proposal and a NIT when doing bioethics and deciding how to solve a case or defend a guideline or policy. In the CO case, the IT assumed a society that supposedly functioned as a fully compliant society, instead of acknowledging how the strong resistance and the systematic disrespect for women operated. The IT was blind to what was happening and to ways to redress these unjust situations. Following the IT would have harmed the weakest and would not have promoted long-term goals. However, in the case of research with pregnant women, the IT protects the most vulnerable persons. It assesses long-term goals and seeks to change the status quo. Thus, before accepting the NIT in this case, we should remember that what is attainable in the real world may not be good enough and there might be worthy ideals (Tessman 2010, 813) or long-term goals to consider. Acknowledgments  Francisco García Gibson, Pablo Gilabert, Felicitas Holzer, Nancy Jecker, Ignacio Mastroleo, Joe Millum, Eduardo Rivera Lopez, and Elizabeth Victor.

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References Angell, M. 1997. The ethics of clinical research in the third world. New England Journal of Medicine 337 (12): 847–849. Ayad, M., and M.M. Constantine. 2015. Epidemiology of medications use in pregnancy. Seminars in Perinatology 39 (7): 508–511. https://doi.org/10.1053/j.semperi.2015.08.002. Bergallo, Paola. 2014. The struggle against informal rules and abortion in Argentina. In Abortion law in transnational perspective: Cases and controversies, ed. Rebecca J. Cook, J.N Erdman and B.M. Dickens, 143–165. University of Pennsylvania Press (A Spanish edition was published in August, 2016). Casas Becerra, Lidia. 2019 ¿Todos ganan con la ley de aborto en Chile? De la objeción del stock holder a la objeción institucional SELA. (Working document). Cohen, Gerald Allan. 2003. Facts and principles. Philosophy & Public Affairs 31 (3): 211–245. https://doi.org/10.1111/j.1088-­4963.2003.00211.x. ———. 2008. Rescuing justice and equality. Cambridge: Harvard University Press. Daniels, Norman. 1996. Justice and justification: Reflective equilibrium in theory and practice. Cambridge: Cambridge University Press. Erman, E., and N. Möller. 2019. A world of possibilities: The place of feasibility in political theory. Res Publica 26: 1–23. https://doi.org/10.1007/s11158-­018-­09415-­y. Farrelly, C. 2007. Political Studies 55 (4): 844–864. Geuss, Raymond. 2008. Philosophy and real politics. Princeton: Princeton University Press. Gilabert, Pablo. 2008. Global justice and poverty relief in nonideal circumstances. Social Theory and Practice 34 (3): 411–438. ———. 2012. Comparative assessments of justice, feasibility, and ideal theory. Ethical Theory and Moral Practice 15 (1): 39–56. ———. 2017. Justice and feasibility. A dynamic approach. In Political utopias. Contemporary debates, ed. Michael Weber and Kevin Vallier, 95–126. Oxford: Oxford University Press. Hamlin, A., and Z. Stemplowska. 2012. Theory, ideal theory and the theory of ideals. Political Studies Review 10 (1): 48–62. https://doi.org/10.1111/j.1478-­9302.2011.00244.x. Heyrana, K., H.M. Byers, and P. Stratton. 2018. Increasing the participation of pregnant women in clinical trials. Journal of the American Medical Association 320 (27): 2077–2078. https://doi. org/10.1001/jama.2018.17716. Holzer, F., and I. Mastroleo. 2019. Innovative care in Latin America: Definition, justification and ethical principles. In Controversies in Latin American bioethics, ed. Martín Hevia and Eduardo Rivera López, 145–176. Cham: Springer International Publishing. https://doi.org/10.5281/ zenodo.2577257. List, Christian, and Laura Valentini. 2016. The methodology of political theory. In Oxford handbook of philosophical methodology, eds. Herman Cappelen, Szabó Gendler, Tamar, and Hawthorne, John, 525–553. Oxford: Oxford University Press. doi: https://doi.org/10.1093/oxf ordhb/9780199668779.013.10. López, Fabián. 2019. Denunciaron penalmente a los médicos que le hicieron una cesárea a la chica violada en Tucumán. La Nación, March 11. https://www.lanacion.com.ar/sociedad/ denunciaron-­penalmente-­medicos-­le-­hicieron-­cesarea-­nena-­nid2227505 Luna, F. 2015. Medical ethics and more: Ideal theories, non-ideal theories and conscientious objection. Journal of Medical Ethics 41: 129–133. https://doi.org/10.1136/medethics-­2014-­102295. ———. 2018. From the middle ages to the 21st century. Abortion, assisted reproduction technologies and LGBT rights in Argentina. Canadian Journal of Bioethics 1 (2): 26–36. https://doi. org/10.7202/1058266ar. Lurie, P., and S. Wolfe. 1997. Unethical trial interventions to reduce perinatal transmission of the human immunodeficiency virus in developing countries. New England Journal of Medicine 337 (12): 853–856. Mills, Charles W. 2005. “Ideal theory” as ideology. Hypatia 20 (3): 165–184.

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Mora, María del Rosario Espinoza. 2017. La investigación clínica en Costa Rica se encuentra en un punto crítico: aplicación actual de la “Ley Reguladora de Investigación Biomédica.”. Acta Médica Costarricense 59 (3): 88–89. O’Neill, Onora. 1987. Abstraction, idealization and ideology in ethics. In Moral philosophy and contemporary problems, ed. John David Gemmill Evans, 55–69. Cambridge: Cambridge University Press. https://doi.org/10.1017/s1358246100003660. ———. 1996. Towards justice and virtue: A constructive account of practical reasoning. Cambridge: Cambridge University Press. Pateman, Carole, and Charles Mills. 2007. The contract and domination. London: Polity. PHASES (Pregnancy +HIV/Aids Seeking Equitable Study). 2017. Ethical inclusion of pregnant women in the HIV research agenda (Working document), Thailand. See final publications: http://www.hivpregnancyethics.org/phasespublications Rawls, John. 1999. The law of peoples. Cambridge: Harvard University Press. Robeyns, Ingrid. 2008. Ideal theory in theory and practice. Social Theory and Practice 34 (3): 341–362. https://doi.org/10.5840/soctheorpract200834321. Sen, Amartya. 2006. What do we want from a theory of justice? Journal of Philosophy 103 (5): 215–238. ———. 2009. The idea of justice. London: Allen Lane/Penguin. Simmons, John A. 2010. Ideal and nonideal theory. Philosophy & Public Affairs 38 (1): 5–36. Tessman, Lisa. 2010. Idealizing morality. Hypatia 25 (4): 797–824. US Department of Health and Human Services. Protection of human subjects: https://www.hhs. gov/ohrp/sites/default/files/ohrp/humansubjects/regbook2013.pdf.pdf.2009. Accessed 30 Oct 2018. Valentini, Laura. 2009. On the apparent paradox of ideal theory. Journal of Political Philosophy 17 (3): 332–355. ———. 2012. Ideal vs. non-ideal theory: A conceptual map. Philosophy Compass 7 (9): 654–664. Waldron, Jeremy. 1999. Law and disagreement. Oxford: Clarendon. Williams, Bernard. 2005. In the beginning was the deed. Princeton: Princeton University Press.

Chapter 3

The Positioning of Moral Agents and Its Relationship to Nonideal Bioethics Daniel Beck

Moral judgments in medicine are wracked with stress and uncertainty. One longs for procedures that could maximize the likelihood of making the right judgments. However, while academic discussions on methods in bioethics have produced a variety of frameworks for decision-making, no convergence on a single method has emerged. Difficulty in this line of inquiry emerges, in part, from shared but flawed assumptions concerning how ideal ethical theory relates to how we ought to make moral judgments in nonideal circumstances. Though nearly all bioethics methodologies reject idealized models of ethics, many fail to diagnose the central problems of idealization in terms of a positive conception of nonideal circumstances. I argue that these circumstances call for attention to three kinds of positioning of moral agents: (1) within institutions, (2) along axes of social oppression, and (3) as psychologically and culturally constrained human beings. Ultimately, I claim that a bioethics methodology that accounts for these kinds of positioning will be better served by a feminist naturalized moral epistemology. The second section of this essay first describes several standard features that characterize idealized methodology and then diagnoses the failures of idealization in terms of the kinds of positioning that it ignores. Positioning then serves as the baseline for evaluating several other popular approaches to method in bioethics that, though they clearly reject the standard features of idealized methodology, still harbor idealizing assumptions in their conceptions of the common morality and moral principles. In section three, I argue that a feminist naturalized moral epistemology better accounts for nonideal positioning. This case is further supported by the development of a specific naturalized approach to the common morality, which depicts it in terms of three interlocking interpretations: as (1) shared ecological predicament, (2) shared evaluative space of reasons, and (3) external coherence. These D. Beck (*) Independent Scholar, Cincinnati, OH, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 E. Victor, L. K. Guidry-Grimes (eds.), Applying Nonideal Theory to Bioethics, Philosophy and Medicine 139, https://doi.org/10.1007/978-3-030-72503-7_3

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interpretations are not mutually exclusive, as each interpretation builds on the last and provides additional meaning to the concept of common morality. A naturalized approach that successfully combines all three interpretations can better avoid the idealizing assumptions outlined in the second section. Furthermore, these interpretations provide guidance on how the concept of the common morality can be used to guide bioethical deliberation. This essay does not directly discuss traditional bioethics problems—e.g., abortion, assisted suicide, or cloning. Rather, it confronts popular approaches to method that some prominent bioethicists have developed, and many bioethicists deploy, in attempts to rationally resolve such bioethics problems. Given that bioethicists’ reflections on method and methodology have arisen out of an already engaged approach to concrete issues facing the lives of real people, they are already more conducive to methodological reflections of a nonideal variety. It is hoped that innovations in method inspired by a feminist naturalized moral epistemology can help break through the logjams that await in the discourse around traditional bioethics problems and lead to richer discussions that are more cognizant of oft-ignored ethical considerations having to do with power and positioning. In the conclusion of this chapter, I focus on the implications that arise from naturalized common morality for negotiating moral conflicts arising from when doctors and patients inhabit quite different cultural traditions. Of course, I hope the lessons of these reflections will be more applicable to other engaged areas of ethics, but ultimately the arguments in this essay are steeped in bioethical reflections and aimed at helping bioethics better elucidate bioethical problems.

3.1  Bioethics Methodology and Moral Positioning1 3.1.1  Strongly Idealized Methodology It is safe to say that nearly all bioethicists writing today reject strongly idealized methodologies as I characterize them below. In fact, many bioethicists self-­ consciously fashion their approach in contrast to this “high” form of theory, choosing instead to think of themselves as conducting an engaged philosophy in touch with concrete conditions affecting real people. Even though this is the case, a characterization of the features commonly found in the consciously rejected idealized methodologies will help with a diagnosis of how these self-styled nonideal approaches may still fail to fully capture elements of the nonideal. This section is not an attempt to describe any actual bioethicist’s methodology. Rather, what follows is a description of several features that can be found to some degree in other idealizing ethical theories. These features are: (1) the logical priority

1  Portions of this section are adapted from the first chapter of my dissertation, entitled “Naturalizing Moral Reasoning in Bioethics” (2016).

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of principles, (2) deductivism, (3) the epistemological priority of ideal conditions, and (4) the prioritization of culture-free universal norms over concrete culture-laden values. An understanding of these features will help discover if any vestiges of them still lurk in the popular approaches to method in bioethics considered further below. First, strongly idealized methodology gives logical priority to moral principles. Despite a trend starting in the 1970s to make philosophy relevant to current political issues (Arras 2016)—countering the earlier dominance of metaethics—philosophy was still pictured as the pursuit of abstract truths. The applied ethics trend still assumed that philosophy’s success in ethics relied on its capacity to supply universally applicable normative truths that could inferentially ground answers to concrete moral questions. These normative truths would be moral principles, understood as absolute standards to which behavior ought to conform. Moreover, the smaller the number of principles needed, the better. This conviction concerning the priority of principles pairs well with an emphasis on deductive justification because “an ethical principle is ultimate if and only if it is absolute and such that all other principles are derivable from it” (Shafer-Landau 2003, 268). Deductivism posits logical validity as the appropriate standard for evaluating moral arguments; when taken together, the force of the premises ought to confer necessary truth on the conclusion. Moreover, deductivism depicts the principle cited in the premises as a covering-law, like how we might think scientific laws function to justify predictions of the behavior of objects. Third, John Rawls, whose work has been influential on this question, argues that we must first theorize under idealized assumptions about the agents and institutions who will be guided by our moral theory. This is because we need a systematic picture of the best that can be hoped for in the way of a just society or perfectly moral agent; this picture serves as the standard against which we can judge the merits of incremental improvements from nonideal situations. Rawls (1999) writes, “Nonideal theory, the second part, is worked out after an ideal conception of justice has been chosen; only then do the parties ask which principles to adopt under less happy conditions” (216). Finally, idealized methodology prioritizes reasons that are shorn of any origin in religious and cultural backgrounds, and instead can be expressed in a language shared by all rational people. In a dialogue with Charles Taylor about religion, Jürgen Habermas (Habermas and Taylor 2011) puts the point this way: “Only if one is a member and can speak in the first person from within a particular religious tradition does one share a specific kind of experience on which religious convictions and reasons depend” (61). By contrast, the language we ought to use when negotiating moral-social conflicts should not rely on any of the participants’ specific backgrounds, cultures, or upbringings for it to potentially have force in persuading them to resolve the conflict one way, rather than another. Others have covered well the weaknesses in this strongly idealized picture. First, the ambition toward consistency and explanatory completeness is inappropriate for a practical field like bioethics where one cannot ignore the moral relevance of context. Susan Sherwin (1992) writes, “Broad principles are difficult to instantiate in the complexities of daily life because they often obscure some of the most telling

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features of a situation” (77). Albert Jonsen and Stephen Toulmin (1988) identify the exclusion of context in these approaches to be the result of a mistaken assimilation of ethics to science. Second, strongly idealized theory also lacks grounding in the facts about existing moral systems, both in terms of widely shared areas of moral agreement and sites of moral contestation. Bernard Gert, Charles Culver, and Danner Clouser (2006), for example, invoke common morality and claim that “many philosophers seem to regard their moral theories as generating a new and improved morality” (24). In contrast, these authors think moral theory ought to start with describing the common moral systems we all use, and only then may the theory assist in extending them to difficult situations. Another class of objections challenge the claim that strongly idealized theory can apply to situations involving imperfect agents and institutions. It has been claimed that the costs and benefits of proposed norms or policies will change depending on the level of compliance with them, something not accounted for in strongly idealized theories (Arras 2016). Second, societal efforts to redress imperfections might treat unjustly those who have played fairly by the less-than-perfect rules (Simmons 2010, 20–2). Finally, especially with respect to public policy, the existence of border-line cases for the application of moral and political principles calls for an account of acceptable deliberative procedures, which strongly idealized theories do not provide (Gutmann and Thompson 2009). Agreement that strongly idealized theory is problematic does not imply that there is agreement on how methodology should proceed without it. Most critiques of idealized theories have focused on the negative characteristics of idealization, not on a positive picture of what makes morality in real life nonideal. I claim that nonideal circumstances can be understood in terms of positioning. The absolutist and universalist conception of principles presumes that the ethical point of view is independent of all perspectives. Further, deductivism rules out as epistemically irrelevant any contingent facts about the moral-epistemic agents making the argument. Additionally, the epistemological priority of the ideal presumes we can theorize about the ideal in a way that is independent of the nonideal circumstances in which we find ourselves. Finally, the insistence on using reasons shorn of cultural baggage hides the fact that the supposedly neutral language of Western philosophy is itself inextricably laden with the baggage of European middle-class culture. A primary feature of our nonideal circumstances is our unavoidable epistemic position. When we engage in moral reflection, we do so constrained both socially and historically. We cannot achieve a perspective free from cognitive limitations. There are at least three kinds of positioning for which bioethical methodology needs to account. First, Moral Agents, Especially Bioethicists, Are Positioned Within Institutions  The kinds of priorities that institutions have and the kinds of experiences that institutions make available partially determine the kinds of bioethical problems we find relevant. That most clinical bioethicists work in university medical institutions partly explains why issues in public and global health are relatively

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ignored (Buchanan 2007, 293). These are not the problems they face in their practice. Moreover, ­bioethicists inherit some of the authority and prestige of their institutions. Their work receives social uptake. Just as scientists cannot ignore the social consequences of their research, so too does the perceived expertise of bioethicists create social consequences. An inquiry into the methods by which bioethicists make judgments ought to include consideration of how well or poorly the social processes that maintain bioethicists’ institutional prestige create conditions for reliable and responsible bioethical reflection. Second, Moral Agents Are Positioned Along Axes of Social Oppression  This positioning implies that the social position of moral agents can affect their epistemic reliability in making informed judgments about moral injustices. Because of my social positioning as a white man, everyday instances of racial and gender injustice often go unnoticed by me. It is easy for me to act with naive trust in institutions that have a history of discriminating against women and people of color. This privilege, for example, clouds my ability to reason clearly about the moral complications inherent in public health campaigns to promote mass vaccinations targeting oppressed groups who have faced discrimination by public health authorities in the past. White male privilege works by making itself invisible to its bearers. My social position does not make it impossible to access these truths, and my privilege does not absolve me from responsibility; rather, it increases my responsibility to foster attention and seek out more authoritative sources on everyday instances of oppression. For a public vaccination program to be successful, it must proactively attend to the distrust built up by previous injustices and incorporate in its design and outreach programs the voices of those groups wary of public health authority. Additionally, certain styles of moral deliberation can unwittingly reinforce relations of social oppression. Moral values perceived as universal and culturally neutral often have specifically Western provenances. Insistence on limiting the terms of public debate to just these terms—as Habermas seems to have insisted—can reinforce the hegemony of Western culture over marginalized communities by forcing them to converse in terms alien to their way of life and by falsely portraying their culture as less universally authoritative than Western culture. Finally, Moral Agents Are Positioned as Psychologically, Historically, and Culturally Constrained Human Beings  We are not demigods with perfect information and unlimited time. We never know everything relevant to a situation and suffer from identifiable cognitive biases. We must make decisions before we have been able to think them through to satisfaction. We inevitably think from within the cultural-linguistic resources made available to us, though we are forced to face situations that involve individuals and groups from different backgrounds. These constraints apply too to moral reasoning, and so a methodology for nonideal methods should say something about how to handle these limiting conditions.

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3.1.2  S  trengths and Limitations of Several Popular Approaches to Method in Bioethics The approaches I consider are the pluralistic principlism of Beauchamp and Childress (2019), non-particularist forms of casuistry (Brody 2004), and the “Morality as a public system” view of Gert, Clouser, and Culver (2006). I fully acknowledge that these three systems do not comprise all the approaches to bioethical method currently in vogue. My reason for selecting these three for critical review is that each harbors still idealizing assumptions that can be understood as failures to fully account for positioning as I have characterized it above. All three have moved away from strongly idealized theory, but not far away enough. Moreover, these three provide a relatively broad swath of options, ranging from casuistry to principlism. This is not comprehensive, nor is it intended to be. It remains to be seen if the diagnosis I provide for these three methodologies applies just as well to other popular approaches that are no longer as strongly idealized as the methodology characterized in the previous sub-section. There are two interrelated characteristics common to these methodologies: The grounding of moral theory in the common morality and the softening of moral principles. First, nearly all these more modest approaches understand, as a methodological constraint, that they should adequately link appropriate methods to the shared set of moral beliefs that nearly all morally committed people hold. The common morality and the considered judgments that emerge from it play a privileged justificatory role. Not only is grounding in the common morality a constraint on the development of the theory that informs the method, but the model for individual moral justification itself has at its starting point one’s considered moral judgments, which emerge from the common morality. Second, this grounding in the common morality is combined with a softening of moral principles in terms of their range, level of specification, and normative force. These softened principles almost always drop the absolutist character of idealized principles, and they also almost always require supplementation by some other reasoning procedure to help decide when a moral principle is justifiably overridden or violated. 3.1.2.1  Pluralistic Principlism The pluralistic principlist thinks of the common morality as the “core tenets found in every acceptable particular morality.” These tenets are “not relative to cultures, groups, or individuals” (Beauchamp and Childress 2019, 3). Though the common morality comprises principles, virtues, moral ideals, and human rights, principles are still given the central role. These principles are not “rigid or absolute” (14). Rather, they have pro tanto moral force. They identify “what is wrong to a certain extent or wrong unless there is a compelling justification” (14). They identify consistent forces in our space of moral reasons, but situations nearly always involve more than one moral principle. Thus, a principle that entails a prima facie obligation

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can be overridden. These kinds of considerations of weight are judgment calls, there being no exhaustive ordering in importance for the principles (15–6). The pro tanto common moral principles are combined with coherentism as the model for moral justification. Coherentism identifies the overall coherence of a set of beliefs—how well these beliefs stick together as both logically consistent with each other and mutually supportive—as the standard for justification. A moral belief is justified to the extent that it receives support from all other beliefs and does not conflict with any of them. Yet, bare coherence as the only standard has problems. First, it implies that moral justification is either circular or leads to an infinite regress. Second, it allows that multiple moral codes could be equally coherent, even those that are nevertheless morally outrageous. To avoid these problems, the pluralistic principlist borrows from John Rawls’s notion of reflective equilibrium, which sets considered judgments—those judgments least likely to be affected by bias or conflicts of interests—as an anchor and starting point. These considered judgments anchor moral theory to our moral convictions, as observation statements anchor the natural sciences to our sense experiences. For medical ethics, the framework of moral principles of the common morality serves as this anchor for achieving reflective equilibrium (439–40). 3.1.2.2  Non-Particularist Casuistry Non-particularist forms of casuistry combine principles, common morality, and case judgments in a way that further weakens moral principles. Moral principles are still pro tanto and plural, but they no longer play a starting role in the reflective equilibrium process. The starting points, instead, are “tentative judgments about particular individuals, actions, and social arrangements which are based upon our observations of these particular individuals, actions, or arrangements, but which go beyond what is observed or can be deductively or inductively inferred from what is observed (and do so without the aid of moral theory)” (Brody 2004, 46). Though non-particularist casuists do not talk explicitly in terms of a common morality, they do make similar appeals to certain particularized judgments. Jonsen and Toulmin (1988) illustrate this point with a story about their work on national bioethics commissions. Commissioners would agree on judgments about paradigm cases, for example that the Tuskegee experiments were horribly wrong and unjust, but disagree about the principles that explain this judgment. They write, “The locus of certitude in the commissioners’ discussions… lay in a shared perception of what was specifically at stake in particular kinds of human situations” (18). Though no longer starting points, principles still play a role in a process like reflective equilibrium. Common morality—for Brody, composed of specific, instead of general, judgments—serves as observational data. Principles and rules emerge as generalizations are meant to account for the specific intuitions (Brody 2004, 47–8). As in reflective equilibrium, the judgments that serve as the starting point are ultimately corrigible in the face of convincing theoretical concerns (48).

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3.1.2.3  Morality as a Public System Gert, Culver, and Clouser (2006) provide the most developed account of common morality and its implications for moral theory. And yet, their approach shares many characteristics with strongly idealized theory. Like the other approaches, Gert and his colleagues argue that moral theory ought to be constrained by how well it captures the common morality’s content—understood by these authors as all the moral beliefs for which there is widespread agreement (22). Moral theory does not precede common morality, but rather provides “systematic description and justification” of the common morality, and potentially licenses moral judgments that, strictly speaking, go beyond the common morality’s area of widespread agreement (8). The common morality itself needs no justification. For Gert and his colleagues, the “morality as a public system” conception provides a systematic description of common morality’s content. They claim that there is agreement that “the point of morality is the lessening of the amount of evil or harm suffered by those protected by morality” (11). They further conclude that morality has two features. It is understood by all those to whom it applies, and it is not irrational for these persons to accept being guided by it (23). This is what makes it public. This public system includes both moral rules and ideals. Moral rules prohibit actions that cause the harm that all rational people aim to avoid. Moral ideals “encourage the prevention or relief of any of these harms” (35). Finally, this approach does not incorporate a reflective equilibrium model of justification. Rather, the model is much more deductive. Since the moral rules prohibit harms that all rational persons seek to avoid, they are indubitable on pain of irrationality. The authors acknowledge that more specific rules are needed, but these rules are generated quasi-deductively from general rules and must be logically consistent with those rules (77–81). 3.1.2.4  I dealizing Assumptions About the Common Morality and Moral Principles I treat these methodologies together and highlight their similarities because they all make idealizing mistakes about both the common morality and moral principles. Let me start with common morality. The conceptions of common morality outlined in all three of these methodologies invidiously idealize the level of moral agreement among people. The “morality as a public system” view is the worst offender. It identifies the prevention of harm as the central guiding concept that underwrites the inclusion of general rules about preventing specific harms in the common morality. Although harm is important to morality, the claim that harm is the primary concept is not well supported by empirical research. Jonathan Haidt and Jesse Graham have identified five separate moral bases for people’s moral attitudes: (1) harm, (2) fairness, (3) loyalty, (4) respect of authority, and (5) purity (Haidt and Graham 2007). The casuist insistence on identifying agreement at the level of case judgments fares little better. That one could identify significant agreement on the level of individual

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case judgments seems as unlikely as finding agreement at a general level. I have similarly pessimistic hopes for the pluralistic principlist view of common morality. Attempts to find agreement at the differing levels of principles, rules, or specific judgments all suffer from a problem of vacuity. The more vacuous we make the terms of agreement, the more surface-level agreement we can identify. One would be hard pressed to claim that nearly all people interested in morality do not share a concern for autonomy, beneficence, non-maleficence, and justice (Beauchamp’s and Childress’s principles). However, once those principles start to take on specific meaning, agreements begin to fall apart. Quill R. Kukla, writing as Rebecca Kukla (2014, 80), makes a similar objection to the idea of universally accepted principles. Before we can test to see if a principle is, in fact, accepted by everyone, we have to come up with a “discursive formulation” of that principle—an understanding of what it means and what it entails. It is unlikely that we could get everyone to agree to a specific formulation, as different formulations will vary in how clear they seem to different groups. If we cannot get everyone to sign on to one meaning for a principle, then we could not even proceed with determining who does and does not agree with it. A similar problem emerges for specific judgments. Nearly everyone may agree that the Tuskegee experiments were morally abominable. However, without substantive specification of “moral abominableness,” it is unclear what people agree on when they agree on this. This way of universalizing the common morality underestimates the importance of both the second and third kinds of positioning. It papers over zones of conflict within pluralistic and hierarchically organized societies, as well as between culturally distant societies.2 Moreover, grounding moral reasoning in the common morality, without also cultivating a politically critical attitude, can potentially propagate widely shared implicit biases about race and gender through to our practical conclusions. Even if common morality methodologies seek to bolster their accounts by basing their views of the common morality on more empirically informed descriptions of what people share in the way of moral beliefs, those methodologies are still vulnerable to this objection.3 I do think that there is something to the concept of common morality, but current formulations do not fully account for positioning in nonideal circumstances. The approach to naturalizing that is developed in the third section of this essay will be more fully elucidated in terms of its reinterpretation of the common morality and its role in bioethics methodology. Idealizing assumptions can be found in the formulation of moral principles and rules as well. The “morality as a public system” view claims that there is an explicit, clearly demarcated set of rules and ideals guiding moral action, but this does not accurately capture how we actually reason about moral issues. Gert, Culver, and Clouser insist that moral rules be free from ceteris paribus clauses, claiming that  A similar idea is developed in Turner (2003).  I am indebted to Schwartzman (2012) for this line of argument. Her target is the philosophical method of thought experiments, but the argument applies as well to bioethical methods invoking common morality. 2 3

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they “apply to all rational persons, at all times, and in all places.” (2006, 14). Yet, the only suitable characterization for how moral principles figure in human moral cognition is as defeasible generalizations. Discursive rule-based reasoning is the exception, rather than the rule, in individual human behavior. Moral cognition is primarily a matter of deploying perceptual skills that outrun in complexity and applicability any sentential representation of them (Churchland 2000, 295). This is not to deny that discursive moral reasoning has an important role. Clark (2000) provides a compelling account of the role of linguistically mediated moral reasoning as serving both to make possible the social negotiation of moral conflict and to make available as explicit objects of thought morally salient patterns like rights and duties. However, even if we accord an important place for linguistically mediated moral reasoning, only defeasible moral generalizations could accurately capture the complex context-­ sensitive workings of moral skills. Pluralistic principlism and non-particularist casuistry fare no better. Pro tanto moral principles do allow that context-sensitive judgments of balancing and weighing play a necessary role, but such principles also claim to identify features as wrong-making or right-making across all situations. None of the modest theories adopt moral reasons holism—the view that in moral matters “what is a reason in one case may be no reason at all in another, or even a reason on the other side” (Dancy 2017). A third idealizing characteristic emerges with respect to the interaction of principles and the common morality in wide reflective equilibrium. This model still carries with it a tendency to view moral reasoning as an individual activity concerned with achieving consistency between the evidence of considered judgments and the explanatory framework of theory. Walker (2007) identifies what this picture ignores as “equilibrium between people as well as within them” (71). Her model of morality, the expressive-collaborative model, is helpful here because it conceptualizes morality as a social system that functions to make possible ongoing and stable forms of common life. This reorients the goal of moral reasoning away from the internal coherence emphasized in wide reflective equilibrium toward the end of securing mutually acceptable forms of common life. It conceives of moral reasoning as an actual social process, a conversation that occurs in real time among members of a community. The internal coherence of moral thought is still important, but it falls short of the further goal of building shared moral understandings through interaction. Common morality is not only a starting point, but also a goal of moral reflection. Let me briefly elaborate on this by discussing how knowledge of other people’s interior lives is essential to being a successful moral agent and how, in learning how to read other people’s thoughts and desires, our own personal identities are shaped and reshaped. We learn to read others through communicating with them. These communicative interactions—talking, working, and playing together—help develop and define a web of stories we learn that tell us who these people are to us and who we are to them. Moreover, these various interwoven stories have normative bite for us, in that they tell us what kinds of obligations and responsibilities we have to each

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other. Lindemann (2014) describes this social aspect of identity formation as the social practice of holding and letting go of someone’s personhood. By way of clarification, consider as an example of this social practice the unique web of obligations, privileges, and affections that may characterize a family. Some of the obligations may be discerned through reflection on an abstract conception of what constitutes a good parent, but much of the content and character of the obligations of a particular parent are elucidated through the idiosyncratic history of the family. Additionally, that history is constantly being re-shaped through the actions and interactions of the family members. Thus, I play a role in shaping my children’s moral identity by, for example, treating them as responsible, caring, and compassionate beings. My actions write those conceptions into their stories. In turn, their actions shape my own identity as a parent—by showing me what they need from me and by showing me what I may have failed to provide. In sum, personal identity is constituted by a web of stories that is constantly re-worked through the actions and interactions of people, and personal identity shapes moral responsibility. In other words, attention to the concrete ways in which the stories are told and re-told will pay dividends in revealing both the development and content of a person’s moral responsibility. This example also illustrates how we do not have full authority over the correct characterization of our personal identities. Other people have some responsibility for keeping up the stories that constitute our own identity. This makes sense as, sometimes, people from the outside looking in can more accurately describe the reasons behind our behaviors. They may have held on to a piece of our story we have neglected. This critique concerning the excessively individualistic conceptions of moral reasoning reflects again the general concern for positioning that I have claimed is essential to understanding morality in nonideal circumstances. Positioning just is a concern for the ways in which the social relations of subjects both constrain and make possible moral reflection.

3.2  N  aturalized Moral Epistemology and the Common Morality4 I offer naturalized moral epistemology (NME) as the basis for an approach that provides the resources for capturing the normative effects of nonideal positioning. Now, NME is not itself a full-fledged methodology. Rather, it is a loose set of methodological and epistemological considerations that can underwrite a naturalized bioethical methodology. It provides a general orientation toward how one should approach methodology but does not prescribe a particular set of answers to methodological questions. The reason for this is that there are a variety of ways of

4  Portions of  this section are adapted from  the  second chapter of  my dissertation, entitled “Naturalizing Moral Reasoning in Bioethics.”

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naturalizing. What follows is, at first, a rough sketch of the various possible moves one can make in “naturalizing,” and then a more specific version of naturalizing I prefer as most adequately meeting the concerns for nonideal positioning. This version will be fleshed out in terms of the common morality. NME seeks to discover and understand appropriate standards of justification for moral knowledge from within empirical investigation alone into human behavior, psychology, sociology, and any other natural knowledge deemed relevant (Campbell and Hunter 2000, 1). It rejects the idealized moral epistemology’s a priori approach to the moral authority question. Instead, it embraces the idea that we can identify models of reasoning that confer authority on moral conclusions wholly from within investigations into the contingent features of human social life. A priori methods of discovering standards of moral justification are at best viewed with extreme suspicion and at worst ruled out entirely as illegitimate. Varieties of naturalizing differ on how much they emphasize the role of scientific knowledge in the construction of moral knowledge. Closely following W.V.O. Quine, scientific naturalized moral epistemology understands knowledge produced by scientific methods as the most reliable form of empirical knowledge. From this scientistic assumption, combined with the naturalizing assumption that we should not use a priori methods for discovering standards of moral justification, it follows that NME falls into place as another branch of science—probably somewhere among the disciplines of psychology, sociology, anthropology, and economics (Walker 2000, 81–2). This is not the only option for naturalizing moral epistemology, however. We might reject the view that scientific knowledge captures all of what we learn from experience. Scientific practice is but one way of experiencing the world, and it is a specific culturally formed experience at that. Because moral practices permeate nearly all forms of human practice, there are many other experiences that give access to the moral understandings that inform our social lives (Lindemann and Verkerk 2012, 292). Combined with an expanded view of experience and a rejection of the view that moral practice can be isolated from other forms of social interaction, naturalizing moral knowledge opens the door to uncovering moral understandings in pretty much any form of social interaction in which norms inhere—which is to say virtually all of them. This variety of naturalizing can be said to naturalize to society instead of science because it does not set up science as another tribunal of reason by which all moral claims must be judged. Rather, it looks to the social practices in which morality inheres to discover what moral reasons are made available and to whom they are made available. Most versions of NME do well with capturing the third kind of positioning (as psychologically, historically, and culturally constrained human beings) because of the emphasis on grounding approaches to moral justification in broadly empirical methods. This involves understanding moral justification as a practice of human beings that are cognitively limited in the many ways that psychology and

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evolutionary biology have shown. However, this leaves out the first and second kinds of positioning (within institutions and along axes of social oppression). To account for these kinds of positioning, a third line of differentiation needs to be brought into the picture. It concerns what kind of role social reflexivity plays in naturalized accounts of moral knowledge. Here is where the contribution of feminism to naturalized moral epistemology (FNME) comes into play. Feminist naturalism accepts some version of the following claim: “Evidence supports (justifies, warrants) a claim only relative to a socially constructed context of auxiliary assumptions and alternative hypotheses” (Campbell 1998, 65). In other words, moral reason is transcendentally relative to essentially social background forms of life. In addition, feminist theorists have insisted on a more politically oriented focus in social reflexivity. They get us to ask how background forms of life are socially constructed and who is excluded or marginalized within them. Walker’s (2009) formulation is especially helpful: “Contemporary projects in feminist ethics and the philosophy of race often advance yet another and specifically pointed kind of naturalism about ethics: they demand that in ethical theorizing we look at society in addition to science and at the dominance of some voices and exclusion of others within societal and professional conversations about morality and ethics” (3).5 Recall from Section Two that conceptions of the role and content of the common morality provided a main source of the remaining idealizing assumptions in mainstream bioethics. Yet, the common morality approach to bioethical methodology is naturalistic in spirit because it recognizes that both abstract and concrete moral reflection must start from a position of shared moral understandings. Thus, I do not reject the use of the notion of the common morality in bioethics. Rather, I insist that we make its naturalistic spirit central to its articulation. FNME, as outlined above, provides the basis for this rearticulation of a naturalized common morality. There are three layers of this rearticulated naturalized common morality: (1) as shared ecological predicament, (2) as shared evaluative space of reasons, and (3) as external coherence. Each notion on its own is necessary, but incomplete in terms of specifying a naturalized and nonideal conception of the common morality. It is with the notion of common morality as external coherence that feminism makes its distinct contribution.

5  It is worth explicitly acknowledging that, though I emphasize these insights as feminist contributions, other contemporary philosophical projects committed to interrogating the way social practices of exclusion, marginalization, and oppression have shaped discourse have also reached these and similar conclusions. The insights may not be distinctively feminist, but they have been effectively deployed in unmasking masculinist assumptions undergirding supposedly neutral moral “ideals.” For an example, refer to Sect. 3.2.3. for a discussion of Quill R. Kukla’s criticism of the applicability of traditional notions of autonomy to the case of prenatal care.

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3.2.1  N  aturalized Common Morality I: Shared Ecological Predicaments One alternative way to talk about the common morality is to focus not on the content of moral beliefs held in common, but rather on the shared human predicament that gives rise to moral responses. Human beings developed moral systems in response to similar ecological circumstances. Similar selective pressures—that is, human vulnerabilities to the same kinds of threats—influenced the development of similar psychological traits, such as limited altruism and a certain sensitivity to the feelings and thoughts of those close to us. Humans now live in similar natural and social environments that pose shared threats to human flourishing. The way human populations are interconnected through international travel and trade, for example, makes the possibility of global pandemics a shared threat. These evolved similarities and shared external threats suggest that moral responses are likely to develop in similar patterns across the globe. As Owen Flanagan (2017) describes it, “We are cultured mammals who think, imagine, and explore various parts of possibility space” (59). Though cultural differences shape our ways of interacting in this possibility space, general facts about shared innate capacities and tendencies shape what we mean by “human nature.” W.V.O. Quine’s version of naturalism helps explain the relevance of these “general facts” of “human nature” to resolving moral questions. One of the problematic assumptions of traditional and idealizing epistemology identified by Quine (1969) is radical reductionism—the thesis that “every meaningful statement is held to be translatable into a statement (true or false) about immediate experience” (36). Consider simple observational statements (“The cat is on the mat”). One might get the impression from these statements that the meaning of each individual term could be cashed out in terms of simple statements about sense data. And so, the truth of the statement could be confirmed solely based on having certain sensory stimulations correlated with the statements. The problem is the conceptual leap that supposes these simple examples to provide a template for all statements about nature. Put aside for the moment the question of whether radical reductionism makes sense for even simple statements about nature. It does not make sense of more complex statements. For nearly all observations, one has a choice with respect to whether we read that observation as falsifying our hypothesis or revealing a miscalibration in our observational equipment. Instead of a radically reductionist empiricism, Quine suggests a holistic view of the relationship between empirical theory and observation. Theories, or at least substantial parts of them, will have empirical consequences that can be used to test the theory, but not to test individual statements. Hence, epistemology is not going to be able to place science on a firm footing by deducing scientific statements from observational simples. Epistemological theory is itself part of the overall web of belief subject to empirical testing. Quine (1969) writes, “Epistemology, or something like it, simply falls into place as a chapter of psychology and hence of natural science” (83).

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Quine’s naturalized epistemology was later criticized for allegedly jettisoning the traditionally normative component of epistemology. However, Quine (1986) does not see the normative side of epistemology eliminated, but rather transformed into “the technology of truth-seeking” (665). Given the ulterior end of gaining truth, normative epistemology seeks to understand the standards for probabilistic thinking expressed in statistics and mathematics, as well as the common psychological biases or errors that habitually get in the way of attaining truth. Normative epistemology naturalized still seeks to provide resources for improving our current epistemic state, but always from the perspective of our current epistemic goals. The kind of descriptive inquiry sketched above can still be carried out for moral epistemology. We can investigate instances of purported moral knowledge, belief, and feeling. We can use the sciences to try to understand how we humans go from the combination of the limited amount of sensory information and our innate psycho-­biological equipment to full-blown social moral codes and individually regulated behavior. We can develop schemes of classification for different kinds of moral systems, and we can refine the concept of a moral system to help distinguish it from other closely related normative systems, such as aesthetics, etiquette, or law. We can look at psychological barriers to moral motivation as well. Descriptive moral epistemology seems robust enough for Quine, but he does not have high hopes for normative moral epistemology. According to Quine, whereas science is unified by the shared ulterior end of “truth or prediction,” ethics is marked by fundamental and intractable value disagreements (1986, 665). Since the ulterior end of science is given, normative epistemology becomes an instrumental applied discipline. However, normative moral epistemology cannot similarly become an instrumental applied discipline because ethics is not so unified behind one value or set of values. However, others, Owen Flanagan for example, have extended Quinean insights for a naturalized epistemology to make room for objective naturalized ethics. This starts with a rejection of Quine’s move to naturalize to psychology alone. Psychology is unconcerned with norms for thought or action, but both epistemology and ethics have a descriptive-genealogical and normative component. For naturalized ethics, the descriptive-genealogical component explores “the multifarious varieties of moral possibility,” showing how people did and do confront the moral problems they face, using the resources available in their ecological niche (Flanagan 2017, 54). This component does not only draw from psychology, but also from any source it can get help from. As Flanagan (2017) writes, “We are lucky in ethical thinking to be able to use information from all the human sciences, as well as from philosophy and the arts…The arts are also—indeed at the same time and for the same reasons— ways of knowing, forms of knowledge, natural knowledge” (59). The normative component, or as he later calls it “oughtology,” takes the descriptive-­genealogical component as the material for “reason and imagination to notice alternative ways of being and doing, and to sketch scenarios that might be improvements on our practices, values, virtues, and norms.” (2017, 54). For Flanagan, the normative is not derived from the descriptive. Like science, normative theory is also underdetermined by the evidence. But just as underdetermination

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does not doom science, neither does it doom normative naturalistic ethics. Virtues and values are not theorems that explain the facts about how we behave toward each other. Rather, we judge certain norms and values reasonable based on inductive or abductive reasoning about the descriptive “evidence” we have. The normative component of ethics involves the “imaginative deployment of information from any source useful to” the various ends we have in deploying moral norms (2017, 57). One obvious strength of this conception of common morality is that it ties one’s normative inquiry down so that it is responsive to the empirical realities of human life, what I have styled as the third kind of positioning. Nonideal theory enjoins us to theorize from the position of real human beings, and a recognition of the environmental, psychological, and biological limits helps ensure that our moral reflection is reflection for real people. Second, it avoids the problematic move of claiming that a significant chunk of meaningful and universally shared moral beliefs can be identified. Instead, it takes a common backdrop against which it can compare and evaluate moral differences. An understanding of the common biological and psychological heritage of humanity makes possible an even richer exploration of how that common heritage is differently deployed and developed across ecological niches. Flanagan (2017), for one, emphasizes the utility of cross-cultural and comparative moral philosophy for normative ethics: “Shared human nature is insufficient for flourishing and vastly undermines the possibility space for human lives” (30). Owing to the underdetermination thesis, this comparative study may show that some moral responses are better than others; others may equally be considered neither better nor worse because they are responses to different ecological situations. If the COVID-19 pandemic has done one thing for the advancement of critical reflection on the ethics of public health, it has shown how a globally shared problem unfolds differently in communities with different cultures and histories. One moral problem that emerged for Western cultures—the United States chief among them— was a concern for protecting privacy while conducting the contact tracing methods that could help suppress the spread of a contagious virus. For nations like South Korea, privacy concerns simply did not arise as moral impediments to contact tracing (Lee 2020). Rather, cooperation with contact tracing is seen as a civic duty to protect one’s neighbors. Now, the moral acceptance of contact tracing without concern for privacy may work well in the South Korea niche, but not so much for the United States niche—with its different political history and widespread emphasis on individual autonomy. But, understanding these differential responses to shared problems can help us craft solutions that may not be applicable to all niches, but rather uniquely situated to respond effectively to the niche we occupy. Yet, the common morality as shared ecological predicament does not alone provide us with the resources for navigating difficult moral situations, even if we allow that different moral solutions emerge for different ecological niches. Many ways of organizing human communities might turn out to be stable over the long term and successful in meeting basic biological and complex psycho-social needs. But for all that, these ways of living might still be genuinely morally unjustifiable. To be sure, some extremely immoral forms of social life will likely be unstable in the long term from a psychological and sociological standpoint. It is hard to see, for example, how

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the moral-political ideology of Nazism could be humanly sustained for a long period of time without tearing itself apart. However, there are long standing and socially sustainable forms of life that, for example, assign inferior social positions to certain classes of people based on religious or mythological meaning-value systems that rationalize such hierarchies. Slavery has existed in some form for most of human history—and continues to exist today, albeit in more diminished forms. Slavery’s ecological sustainability does not seem to be its problem. Morally bad forms of social organization can, for all that, still be ecologically sustainable. If we want means for rationally criticizing these forms of social organization, then we will have to introduce a basis that goes beyond this first notion of common morality. You do not need to suppose that there is only one valid way to live to see this point. You need only grant that there might be sustainable ways of living that are invalid. All this discussion, however, raises a serious problem: How can we maintain a naturalistic approach and yet still expand the resources for moral knowledge beyond the kinds of facts discoverable by the natural and social sciences? The second notion of common morality introduces a more robust conception of nature that can defuse this apparent tension.

3.2.2  N  aturalized Common Morality II: Shared Evaluative Spaces Quill R. Kukla, writing as Rebecca Kukla (2014), describes the common morality as “an endlessly complex yet remarkably stable web of embodied normative responses, coping techniques, perceptual skills, communicative rituals, ways of making public our desires and needs, and so on” (81). What is held in common are not explicitly stated moral beliefs, nor is it simply the shared natural environment, but rather it is the background of meaning in which moral practices get their life and applicability. It is a largely unspoken of set of practices that enable us to make meaningful moral gestures toward each other. This can be fleshed out with some help from John McDowell’s rehabilitation of the Aristotelian concept of second nature. McDowell’s (1998) primary target in “Two sorts of naturalism” is an interpretation of Aristotelian ethical naturalism that understands the rational appeal of the virtues in terms of their supposedly necessary relation to securing human happiness, where happiness is defined in terms of natural facts independent of moral virtue. For McDowell, the problem with this account is that facts about human needs do not on their own imply that one ought to act on their basis. The capacity for rational thought is inextricably linked to the capacity of freedom in action: “We cannot make sense of a creature’s acquiring reason unless it has genuinely alternative possibilities of action, over which its thought can play” (170). Given a creature’s freedom of action, the mere citation of facts about what the creature needs to be a good creature of its kind does not provide rational motivation. McDowell writes, “Reason does not just open our eyes to our nature, as members of

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the animal species we belong to; it also enables us and even obliges us to step back from it, in a way that puts its bearing on our practical problems into question” (172). McDowell invokes the concept of second nature to reconcile naturalistic ethics with the idea that critical-rational capacities distance us from our own natures. The facts of first nature are those biological, psychological, and evolutionary facts about us.6 Second nature is the culturally formed state of our practical reason that “opens our eyes” to moral reasons and enables us to question the rational credentials of any putative reason before us. We become responsive to not just the first natural facts but also distinctively moral reasons that we perceive as existing independently of our needs and desires. The facts of first nature are not completely left behind, according to McDowell (1998). For one, “first nature” places limits on potentially intelligible moral outlooks (190). Moral outlooks are always open to reflective scrutiny and, for a moral outlook to pass reflective scrutiny, it cannot posit a way of living that is psychologically and sociologically impossible for human beings.7 Second, as McDowell (1998) notes, “first-natural facts can be part of what reflection takes into account” (190). First-natural facts can provide rational reassurance for a moral outlook. When it so happens that the kinds of actions commended by our moral outlook are also the kinds of actions that help humans secure their basic needs, this provides reassurance that we have chosen the right moral reasons. According to the second layer of common morality, we are brought up to inhabit a space of reasons with others where ethical demands are perceived by us as reasons for actions. This space of reasons is not so uniform that these reasons could be codified as principles. In addition, though these reasons are not perceived as relative, we owe our access to them to the communities that raised us to see moral reality for what it is. Though I do not deny that moral norms with universal scope exist, no universal common morality exists that contains a set of these universal principles sincerely believed by all morally serious persons. Cross-cultural moral conversations do not work by discovering prior agreement on universal principles. Rather, the work is more arduous. Participants share with each other to build new lines of connection between established moral outlooks. This long process affects successive fusions of background forms of life. The second-nature view also does not take common morality to be dogmatically grounding. For Beauchamp and Childress, the moral conclusions reached in reflective equilibrium gain their legitimacy through their relation to the universal norms of common morality because these norms are independently justified. In contrast, second-nature common morality justifies transcendentally. The background mesh of meanings, habits, and patterns of perception is a non-optional starting point for moral reflection with others (Kukla 2014, 82–3). One already must be within the shared space of reasons to see the point of various moves made in moral  This is roughly what I identified as the first notion of common morality.  Consider John Doris’s (1998) situationist critique of virtue ethics as an example of this. The situationist critique looks to undermine virtue theories of ethics by pointing out empirical inaccuracies in their moral psychologies. 6 7

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justification, but every individual piece of that space—every strut in its architecture—is up for re-evaluation. Lindemann and Verkerk (2012) approach clinical ethics through a naturalized lens that is akin to this second naturalized understanding of common morality. In their prescriptions for improving clinical ethics, Lindemann and Verkerk do not picture the ethicist as someone who has specialized moral knowledge that clinicians do not have. That is, it is wrong on the naturalized picture to conceive of ethicists as experts on morality, just as oncologists are experts on the medical care of cancer patients. Health care providers already have the moral understandings they need to navigate the social world they inhabit, primarily because of both their upbringing as competent speaking adults and their "upbringing" in the more specialized world of health care. Though the first is more properly what I refer to as second nature, one could understand the way of seeing the world as a medical professional as a further specification of a second nature.8 If we follow Lindemann and Verkerk’s approach to clinical ethics a bit further, we can tease out some specific methodological suggestions that are afforded by this second conception of naturalized common morality. First, the moral facts made available to us through our second natures are not to be discovered in the same way as the first-nature facts of the previous conception of common morality. Those facts privilege scientific methods of investigation. Though the moral facts of second nature figure uncontroversially in all competent adults’ interactions with the world, they often do so implicitly—in the background. It takes practices of reflection to help bring them to the forefront. This is not only philosophical reflection but also narrative and artistic reflection, as well as psychological reflection. Moral philosophers and clinical ethicists, if they have a contribution to make, engage in reflection of their own to reveal how moralities function and help provide reflective space, time, and guidance for clinicians and patients. Lindemann and Verkerk describe this role as helping clinicians enhance their own moral perception (303). Additional methodological suggestions can be teased out from this conception. The common morality of shared evaluative spaces provides a more autonomous— but still naturalized—conception of practical rationality. Practical reasoning under the notion of common morality as shared ecological predicament was instrumentalist. The reasons recommending a particular social practice were contingent on their connection to innate human drives or desires. Manifestly immoral social practices that could meet those innate human desires would come out just as reasonable as practices that were kind and ennobling. Second-nature common morality explains how facility in navigating a world of moral predicates and actions is just as natural as the conception that links moral properties to independent facts of human nature. This second layer of common morality, too, has limitations, and the following observations are meant to resist a temptation to understand the space of reasons as 8  Recall the first kind of positioning I mentioned previously—the positioning of agents within specific institutions. This second notion of common morality provides some resources for understanding the effect this positioning has on moral agents’ deliberation in terms of understanding the institutional culture as a modification of second nature.

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an ideal space. Although we are all brought up to inhabit a space of reasons that is already there for us and that we learn to navigate seamlessly (in most instances), it is not a perfectly stable architectural space. Rather, it is one still under construction and in need of maintenance. First, although a second nature is an essentially social space where the observations and reasons that constitute it presuppose a particular community, not all individuals are equally placed at the center of the epistemic community with respect to having some authority to define what counts as a correct observation or genuine reason. Recall McDowell’s observation that facts of first nature and human embodiment put limits on the possible shapes of second nature. One consequence of this, generally ignored by McDowell, is that variation in types of embodiment among human beings influences the shape of second nature as much as do universally shared aspects of our embodiment. For a vivid example of this, I note Jackie Leach Scully’s (2008) invocation of Pierre Bourdieu’s concept of habitus—the "pretheoretical, pre-reflexive knowledge that we absorb from behavior and practices that are demonstrated, rarely articulated, by the people around us” (65)—to discuss the ways in which anomalous embodiments can affect moral understandings. Habitus helps make explicit the two-way interaction between the shaping of the body and the shaping of one’s practical reason. The inculcation of a second nature places the body within a horizon of meanings such that evaluative perceptions become feelings that are distinctively embodied. But the body also shapes second nature. Our bodies play a role in shaping the space of reasons that we come to inhabit through acquiring a second nature, and this is reflected in our moral language. For example, consider the established metaphorical relationship between the bodily positioning of being upright and moral notions of honesty and integrity. Our conceptions of normal bodies and abnormal bodies shape our moral perceptions of character traits like honesty in others. People whose bodies do not conform to the norm are alienated from the dominant moral discourse, and people who associate integrity with uprightness, for example, may reflexively harbor biases against people who are unable to stand upright. Such people with non-­ normative body shapes will struggle to be heard and respected on par with others in moral conversations.9 This is not to reject the transcendental necessity of a shared space of reasons. Rather, this is to say that there is not complete conformity within that space. Recognizing the internal diversity of subject positions within second nature can help expand the epistemic resources for objectively criticizing and improving it. Naomi Scheman (2011) develops this point in relation to Wittgenstein’s treatment

9  Jamie Lindemann Nelson (2003) expresses a similar observation. She specifically discusses this kind of observation in relation to the metaethical views of John McDowell and Sabina Lovibond. Drawing from insights in Austen’s Emma, she argues that the debate about motivational internalism and externalism turns on “the relationship between an agent and the moral understandings considered authoritative in her moral-social world” (88). The provocative point here is that one’s experience of the moral facts that are there for you as directly motivating action depends on whether your second nature enables you to be fully integrated into your own evaluative culture.

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of rule-following and forms of life. One way of characterizing Wittgenstein’s point about rule-following is that there really is nothing behind how we know how to correctly follow rules, besides the fact that it is just what “we” do. If you interpret forms of life as internally homogeneous, then you are bound to see this conclusion as relativistic. One is either inside a form of life, or outside of it. If inside, then the way you do things just are the way you do things. If outside, then all criticisms will referentially miss the mark because they will operate according to standards of rationality that the participants of the form of life do not accept.10 However, as Scheman points out, “The hallmark of reality… is that it looks different to those differently placed in it” (2011, 156). It is the multiplicity of viewpoints within a form of life that provides the rational friction necessary for criticizing the different standards in competition. Scheman’s suggestion that there is internal diversity within an evaluative space means that there is already more than one way we do things within an evaluative space, and this underlies one possibility for how evaluative spaces can be transformed and improved from within. Second to note, second natures are cultural-historical products that have developed in relation to and in interaction with other second natures. Not only is there internal diversity of second natures, but the boundaries between them are porous. Developmental histories often overlap significantly since cultural groups often share and take ideas, customs, and habits from each other. This observation has the benefit of further deflating the worry of relativism. Though the substantive terms of rational debate emerge from a background second nature, this does not mean that no overlap in moral terms between cultural groups exists. Finally, it is important to avoid the temptation to understand the space of moral reasons as only a logical space connecting reasons to actions on a conceptual level. This misses the crucial naturalized insight to investigate moral knowledge and justification as real-time activities, rather than as distinct faculties (Laden 2012, 11). Since moral reasoning is not just a question of logico-conceptual relations, but also a cooperative activity, it is itself a form of interaction governed by norms concerning relations between people (13–4). This brings us to the final notion of a naturalized common morality: common morality as external coherence.

 I am treating “form of life” here as roughly synonymous with “second nature.” Though they are not quite the same thing, they are close enough to make this comparison work. What becomes second nature to us is a specific culturally shaped view of the world as a rationally ordered sphere of human action. The second nature that one gains is a functioning part of a broader form of life that one is initiated into and includes such sundry practices as “asking, thanking, cursing, greeting, praying,” to name only a few (Wittgenstein [1958] 1973, §23). If a form of life is a specific interconnected set of language-games, then a second nature is a subset of those language-games having to do with practical reasoning. This is how I generally understand the relationship between the two terms, but I cannot defend that interpretation here. I do not think anything central to my account relies on the specifics of it.

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3.2.3  Naturalized Common Morality III: External Coherence The limitations of second-nature common morality point to the reality that shared evaluative spaces are neither self-contained nor internally homogeneous realms of pure ideas, but rather internally differentiated and externally porous social spaces of collective deliberation, conversation, and sometimes, conflict. It would be helpful if we had some rough guidelines for how activity in this space might be conducted to ensure that the tension that results from the internal diversity and porous borders results in progressive moral reflection rather than all-out conflict. For this role, I suggest the addition of a third notion of common morality that I call external coherence. I identify this third notion of common morality as external coherence to make its implications for moral justification clear. Wide reflective equilibrium evokes coherence as the major, if not exclusive, standard for epistemically evaluating the results of moral reflection. Here, coherence is taken to mean “the consistency of each element in the overall belief system, including both moral and empirical beliefs, vis-à-­ vis all the other elements” (Arras 2007, 58). External coherence does not replace this idea of coherence, since I do not want to reject the importance of being consistent in the reasons one gives in favor of or against a proposed course of action. Rather, external coherence is meant as a supplementary standard in the evaluation of stretches of moral justification. The notion of external coherence recognizes that moral reasoning is a collaborative and expressive activity that aims at building moral relationships between people, not just ensuring that individuals correctly identify objective moral reasons. A concern for engaging in morally and epistemically responsible moral reasoning requires a concern for understanding where the participants of moral reasoning already stand in relation to each other, especially in terms of whose voice is already heard the loudest and out of whose lifeway the going second nature is constructed. I mean this as further development and specification of Walker’s (2007) short but insightful discussion of reflective equilibrium in Moral understandings. When you drop the picture of ethics as just another kind of science and instead think of it as social negotiation, then maintaining and extending relations between the people involved becomes just as central to the evaluation of the activity as does getting right the logical and conceptual relationships between ideas. In moral-social negotiation, “members of a community of roughly or largely shared moral beliefs try to refine understanding, extend consensus, and eliminate conflicts among themselves” (71). An important part of the negotiation includes the very practices of responsibility and accountability that negotiation aims to shape. How we hold ourselves and others accountable expresses to others our own self-understanding of our place in the moral-social world. External coherence revises the metaphors of “the space of reasons” and “Neurath’s boat.” With respect to the space of reasons, external coherence depicts the space as one inhabited by living breathing people, not just as an architectural space to be admired for its beauty and stability. Likewise, with Neurath’s boat. Otto

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Neurath (1983) illustrates his non-foundationalist epistemology with a metaphor of a boat continually out at sea where the mariners must constantly rebuild the boat to keep it afloat but cannot bring it into a dry dock to dismantle the whole thing at once and replace it with the best parts. The external coherence version of this metaphor emphasizes that there is more than one mariner on the boat. The process of repairing the boat of moral knowledge is a cooperative activity, and we need to be cognizant of which planks others are standing on before we pull them up for repair. This concept of external coherence as another naturalized conception of common morality emerges out of the distinctive ways of doing moral philosophy introduced by feminist moral philosophers. Feminist critiques, both in moral theory and epistemology, point to masculinist biases and assumptions that underlie theory purporting to be gender neutral. The revelation that masculinist bias shaped purportedly neutral theory points to the more general insight that theory is a socio-historical phenomenon that is shaped by the socio-political realities affecting those theorists. A feminist approach looks at morality as a situated discourse and emphasizes that, when we move away from epistemologies that associate objectivity and rationality with transcending a point of view, we can begin to see how the social identities of the participants in a discourse shape its internal logic (Jaggar 2000, 462). Despite pretensions to universality, the construction of the moral point of view has proceeded unevenly, according to the particular interests of those who get to be represented. Though the possibility of this move is implicit in both the Quinean and McDowellian forms of naturalism, it is feminist naturalism that has made it explicit and exploited it effectively. Permit me to emphasize this point. Understanding morality as a situated discourse is a theoretical move that can be gleaned from the American pragmatist tradition, and indeed some of this is evident in the discussions above of the pragmatist influenced W.V.O. Quine. What feminist philosophers have done is show how moral theories that ignore the way gender shapes the discourse produce moral ideals that typically marginalize women in society. Examples abound, but I will focus a bit more in depth on “Conscientious autonomy: Displacing decisions in health care” (2005) by Quill R. Kukla, writing as Rebecca Kukla. Some feminist critiques have argued that the ideal of autonomy is alienating to women in Western societies because it is shaped by the preoccupations and life experiences of privileged men from the middle and upper classes. The moral ideal of autonomy—and the metaphysical individualism that stands behind it—pretend to universality, but only reflect the interests of a certain historically limited social group. The historically contingent interests of this class get transformed into a moral ideal that purports to be ahistorical and universally accepted. This culturally thick ideal of autonomy gets operationalized in standard bioethics discourse as informed consent. Underlying this move from autonomy to informed consent is the assumption that our exercise of autonomy happens in “punctate decisions”—those moments when a discrete choice, isolable from the rest of a patient’s health history, can be made. Though the focus reflects a cultural picture associated with autonomy—the man of action—this is an undue narrowing of the arena in which people genuinely exercise their autonomy. The typical circumstances of

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prenatal care, rather than the more extreme or uncommon circumstances, provide an example of a different kind of autonomy in action, what Kukla (2005) calls conscientious autonomy. According to Kukla, “conscientious autonomy is better thought of as a second-order ability to take responsibility for our practices, including those that are governed by others whom we judge to be in a better position to govern them than we are” (40). This better accounts for the autonomy exercised in routine prenatal care, which is “made up chiefly of routine, ongoing activities” such as taking vitamins, exercising regularly, and abstaining from drug use. The narrow focus of autonomy in bioethics on punctate decisions causes us to miss out on seeing whole swaths of health behavior as exercises of autonomy, and so (in the case of prenatal care) important periods of life that women live through—such as all the proactive work done in bringing a fetus to term—get mischaracterized and undervalued. This naturalist-feminist analysis, and others like it, show us how, despite pretensions to universality, the interests and concerns of only certain social classes have predominantly shaped the contours of what counts for morality. This converges somewhat with McDowell’s second-nature conception of practical reason. What Kukla’s work exemplifies that is not in McDowell—at least not explicitly—is a historical and cultural analysis of how second natures have been constructed in systematically biased ways. Morality is not socially modular in the sense that it could be practically isolated from all the other social practices shaping norms and behavior. What specific norms, then, does external coherence entail? Let me start with one it does not entail. First, external coherence does not entail that moral reasoning is always better if it results in the persuasion of one person by another to come over to their side. It is sometimes enough for mutual understanding that I understand why your reasons make sense for you given where you are positioned in the space of reasons, even if I cannot see myself to be in a similar relation to the reasons that there are. Broadly speaking, external coherence prescribes norms having to do with the intelligibility of your contributions to your interlocutors. This means, at a minimum, that you owe it to those in your moral community to make sure you speak in a way that they can understand. I want to note that I understand this norm as defeasible. Specifically, in communities characterized by a history of social exclusion and oppression, the obligation to speak in a way that can be understood and to actively and charitably listen to the contribution of others rests more heavily on member of the dominant social group. Part of the explanation for this exception rests in the possibilities of pre-existing epistemic injustices, specifically those injustices where oppressed groups are denied even the linguistic and conceptual resources to name their oppression and describe its harm. I have in mind, as an example, the emergence of the term “sexual harassment.” An article in The Washington Post by Kyle Swenson (2017) describes how the term only emerged in the mid-1970s through the efforts of journalist Lin Farley and some of her colleagues. The trauma of sexual harassment long predated the emergence of a name for it, but the lack of a readily available name frustrated possibilities for women to see their experiences as instances of the same social structure of oppression. Finding a name for a shared experience “acted as a bridge between

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women who had been suffering in isolation” (Swenson 2017). In circumstances where the available moral vocabulary fails to provide the needed resources to communicate what has been suffered, there should be no expectation that members of oppressed groups speak in ways that tailor to the conversational expectations of the socially dominant group. It also matters for external coherence who exactly is included in the moral conversation. External coherence seeks to make both the process of moral reasoning and its outcome “common.” Moral reasoning cannot be a process that is “held in common” if reasoning about specific actions or policies does not include as co-­ participants all whose interests are substantially affected by proposed courses of action. Moral understandings fail to be externally coherent insofar as they represent the goals, experiences, and interests of only a limited group of people but are considered authoritative for people outside of that group. Understood as a norm governing the process of moral conversation, external coherence does not dictate there must be final agreement on all substantive matters, nor does it fault participants for disagreement as such, but it does fault participants whose disagreements are based in part on their failure—be it negligent or willful—to understand the pertinent lived experiences of their interlocutors. Finally, it matters also how people are included in the conversation, not just who is included. So, external coherence generates norms prescribing equal participation and respect. In the mutual co-construction of moral understandings that enable ongoing social life, no one group’s intuitions about the good and the right should dominate the social-moral negotiations.

3.3  Conclusion The picture I have painted of a naturalized common morality is somewhat complex, but I think it is now nicely adapted to work for a nonidealized methodology in bioethics. One way of characterizing my approach to the methods canvassed earlier is to say that—while they generally understand the errors of strongly idealized methods—they do not have their own epistemological houses in order. It is the still idealizing epistemological assumptions of these methods that I aimed to remedy with insights from feminist naturalized moral epistemology. The insight in the methods critically surveyed in this chapter to pay attention to the common morality is still, however, useful. The preoccupation with the common morality in bioethics and Western philosophical ethics already evinces a widely felt naturalistic concern to make ethical theory responsive to on-the-ground realities of how we go about engaging in morality. As such, it served as a well-placed point of agreement on which to elaborate a naturalized nonideal methodology in bioethics based on feminist naturalized moral epistemology. I conclude by showing how some of the implications for the practice of bioethics of this naturalized approach to common morality can be illuminated by way of example. The example is a wonderfully detailed anthropological case study of a

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young Hmong child named Lia Lee who was diagnosed with a severe form of epilepsy. This story, captured in Anne Fadiman’s (1997) The spirit catches you and you fall down: A Hmong child, her American doctors, and the collision of two cultures, provides a rich resource for interrogating the role common morality plays in informing bioethical reasoning precisely because it lays bare examples where the underlying intuitions and understandings of which evaluative spaces are composed were not shared. The story shows how both cultural difference and power differentials intertwine and combine to cause breakdowns in the collective activity of reasoning in which doctors, patients, and their families must participate to bring about mutually acceptable ethical resolutions to difficult medical problems. This should serve as a rough model for how the naturalized common morality can help us approach other circumstances of cross-cultural communication between doctors and patients. But first, a brief synopsis of the story. Lia Lee was born in Merced, California in 1982, her parents both recent Hmong immigrants from Laos. During the 1970s American military forces trained Hmong people to assist in the military opposition to the Pathet Lao Communist Party in Laos. After the withdrawal of American forces from Laos and Vietnam and the ascendance of the Pathet Lao, many Hmong people were forced into refugee status, as they were treated as traitors by the Pathet Lao administration. The United States was one major destination for these Hmong refugees, including the Lee family. Lia Lee began experiencing serious seizures at the age of three months. Seemingly intractable conflicts between Lia’s family and the medical professionals in Merced that treated her quickly followed. At the heart of these conflicts was a significant disagreement about the nature and cause of her ailment. Lia’s doctors believed she had severe epilepsy that could not be cured, but only managed with the habitual use of anti-epileptic drugs. On the other hand, Lia’s family believed she was afflicted with a condition called “soul loss.” The “life-soul,” which is believed to be intricately connected to health, is thought to be especially liable to being lost in the case of extremely young children. The Lees believed that the anti-epileptics prescribed by the doctors only exacerbated this condition, and the best treatment for it was the ritual interventions of a Hmong shaman, called a txiv neeb. As a result of this disagreement, Lia’s family never gave Lia consistent doses of the anti-epileptics. Eventually, Lia’s doctors sued to remove Lia from her family’s care for a whole year. Later, after Lia was returned to live with the Lee family, a prolonged series of seizures in 1986 left her in a persistent vegetative state. The naturalized common morality developed in this chapter can serve to recommend some interventions that could have improved the outcome in this case and may also provide guidance on future cases facing similar dilemmas. As was previously mentioned, the naturalized common morality of this chapter puts focus on the process of moral reasoning, not just the substance of moral judgments. It pays off for the moral reasoners to attend to questions about mutual respect and equal participation among the parties to the moral conflict. This dimension is left out of the calculus in non-naturalized accounts of common morality, which focus on the logical role that common moral beliefs play in justification. Lia Lee’s case shows us an example where preferred or assumed methods of moral deliberation differed among

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the participants and how a failure to address this led to a further degradation of the process. Fadiman, for example, discusses how decisions could take a long time to be made by Hmong patients who felt the need to consult others (e.g., older siblings, parents, and clan leaders) and noted how this clashed with emergency physicians’ need for decisions to be made quickly in critical situations (1997). Medical communities and representatives of patient populations could take proactive steps to mitigate the clash between these differing communication needs through consultation on practical solutions. For example, clinical bioethicists or others helping patients make tough moral-medical decisions could talk proactively with community leaders to have them available on standby. Thus, one implication for the practice of moral reasoning in bioethics—whether we are talking to clinical ethicists, medical professionals, or even patients—is that attending to the way participants habitually make decisions can lead to more positive outcomes for the process of moral deliberation. Second, naturalized common morality tells us how we can make progress in moral deliberation when it seems that there is little shared in the way of a common morality among participants. Non-naturalized versions of common morality do not give much guidance on such situations. Focusing on process issues at the beginning, rather than on the substantive differences that seem to place you far apart from your moral conversational partner, can help build the trust needed to develop the shared relationship that makes possible mutually acceptable resolutions. Lia Lee’s story reads, in part, as an example of the tragic consequences of a complete lack of trust between medical professionals and their patients. Lia’s family, on the other hand, trusted the interventions of the txiv neeb. Rather than fixating on what may seem like a chasm of differences in intuitions about health and morality between the traditions of the txiv neeb and the system of Western medicine, the starting point for successful negotiation of the moral-medical conflict could be the recognition of the shared aim of restoring health to Lia Lee—a starting point that would optimally include the txiv neeb, who has built some trust with the Lees, in the moral-medical conversation. Finally, naturalized common morality does not downplay alternative sources of moral knowledge, nor does it necessarily privilege the knowledge of the medical doctor, philosopher, or clinical bioethicist, when called on to help negotiate hard real-world moral problems. Recall Quill R.  Kukla’s description of the common morality as “an endlessly complex yet remarkably stable web,” a web not reduced to a set of moral beliefs held to be intuitive or foundational. The ritual practices of the txiv neeb—and the weave of social relationships, conceptions of health, and normative visions of community that these ritual practices underwrite—are part of that complex web of common morality. Incorporating ritual intervention as part of Lia Lee’s treatment should not be considered merely an act to appease the beliefs of the Lee family or merely a tip of the hat to multiculturalism. Rather, it is a recognition that health can be understood as more than just a physical good and that ritual too can be a source for moral knowledge. Let me also point out the utility of the framework of negotiation that the naturalized common morality promotes as a way of understanding what happens when

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people confront, diagnose, and attempt to resolve moral problems. This framework envisions moral problems as embedded in communities of people with differing ideas of the good and different habits of action. This framework understands that the resolution or amelioration of such problems requires cooperation and coordinated action among the people affected. These people must learn to negotiate together to come up with shared conceptions of the problem and shared approaches to resolve or ameliorate the problem. The importance of this is evident in Lia Lee’s story, and the naturalized common morality provides considerations for guiding participants through this social-moral negotiation process.

References Arras, John. 2007. The way we reason now: Reflective equilibrium in bioethics. In The Oxford handbook of bioethics, ed. Bonnie Steinbock, 46–71. Oxford: Oxford University Press. ———. 2016. Theory and bioethics. In The Stanford encyclopedia of philosophy, ed. Edward N.  Zalta, Winter 2016 edn. https://plato.stanford.edu/archives/win2016/entries/theory-­ bioethics. Accessed 30 Oct 2019. Beauchamp, Tom, and James Childress. 2019. Principles of biomedical ethics. 8th ed. Oxford: Oxford University Press. Brody, Baruch. 2004. Taking issue: Pluralism and casuistry in bioethics. Washington, DC: Georgetown University Press. Buchanan, Allan. 2007. Social moral epistemology and the role of bioethicists. In The ethics of bioethics: Mapping the moral landscape, ed. Lisa Eckenwiler and Felicia Cohn, 288–296. Baltimore: John Hopkins University Press. Campbell, Richmond. 1998. Illusions of paradox: A feminist epistemology naturalized. Lanham: Rowman and Littlefield Publishers. Campbell, Richmond, and Bruce Hunter. 2000. Introduction. Canadian Journal of Philosophy 30 (Supp 1): 1–28. Churchland, Paul. 2000. Rules, know-how, and the future of moral cognition. Canadian Journal of Philosophy 30 (Supp 1): 291–306. Clark, Andy. 2000. Word and action: Reconciling rules and know-how in moral cognition. Canadian Journal of Philosophy 30 (Supp 1): 267–289. Dancy, Jonathan. 2017. Moral particularism. In The Stanford encyclopedia of philosophy, ed. Edward N. Zalta, Winter 2017 edn. https://plato.stanford.edu/archives/win2017/entries/moral-­ particularism. Accessed 30 Oct 2019. Doris, John. 1998. Persons, situations, and virtue ethics. Noûs 32 (4): 504–530. Fadiman, Anne. 1997. The spirit catches you and you fall down: A Hmong child, her American doctors, and the collision of two cultures. New York: Farrar, Straus and Giroux. Flanagan, Owen. 2017. The geography of morals: Varieties of moral possibility. New York: Oxford University Press. Gert, Bernard, Charles Culver, and Danner Clouser. 2006. Bioethics: A systematic approach. 2nd ed. Oxford: Oxford University Press. Gutmann, Amy, and Dennis Thompson. 2009. Democracy and disagreement. Cambridge, MA: Harvard University Press. Habermas, Jürgen, and Charles Taylor. 2011. Dialogue. In The power of religion in the public sphere, ed. Eduardo Mendieta and Jonathan Vanantwerpen, 60–69. New  York: Columbia University Press. Haidt, Jonathan, and Jesse Graham. 2007. When morality opposes justices: Conservatives have moral intuitions that liberals may not recognize. Social Justice Research 20 (1): 98–116.

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Jaggar, Alison. 2000. Ethics naturalized: Feminism’s contribution to moral epistemology. Metaphilosophy 31 (5): 452–468. Jonsen, Albert, and Stephen Toulmin. 1988. The abuse of casuistry: A history of moral reasoning. Berkeley, CA: University of California Press. Kukla, Rebecca. 2005. Conscientious autonomy: Displacing decisions in health care. The Hastings Center Report 35 (2): 34–44. ———. 2014. Living with pirates: Common morality and embodied practice. Cambridge Quarterly of Healthcare Ethics 23 (1): 75–85. Laden, Anthony. 2012. Reasoning: A social picture. Oxford: Oxford University Press. Lee, Hakyung Kate. 2020. South Korea’s contact tracing sheds light on extensive efforts to slow spread of COVID-19. ABC, December 9. Lindemann, Hilde. 2014. Holding and letting go: The social practice of personal identities. Oxford: Oxford University Press. Lindemann Nelson, James. 2003. The social situation of sincerity: Austen’s Emma and Lovibond’s Ethical Formation. In Moral psychology: Feminist ethics and social theory, ed. Peggy DesAutels and Margaret Urban Walker. Lanham: Rowman and Littlefield Publishers. Lindemann, Hilde, and Marian Verkerk. 2012. Toward a naturalized clinical ethics. Kennedy Institute of Ethics Journal 22 (4): 289–306. McDowell, John. 1998. Mind, value, and reality. Cambridge, MA: Harvard University Press. Neurath, Otto. 1983. Philosophical papers 1913–1946, ed. R.S.  Cohen and M.  Neurath. Dordrecht: Reidel. Quine, W.V.O. 1969. Ontological relativity and other essays. New York: Columbia University Press. ———. 1986. Reply to Morton White. In The philosophy of W.V.  Quine, ed. L.E.  Hahn and P.A. Schilpp, 663–665. LaSalle: Open Court. Rawls, John. 1999. A theory of justice, Revised edn. Cambridge, MA: Belknap Press of Harvard University Press. Scheman, Naomi. 2011. Shifting ground: Knowledge and reality, transgression and trustworthiness. Oxford: Oxford University Press. Schwartzman, Lisa H. 2012. Intuition, thought experiments, and philosophical method: Feminism and experimental philosophy. Journal of Social Philosophy 43 (3): 307–316. Scully, Jackie Leach. 2008. Disability bioethics: Moral bodies, moral difference. Lanham: Rowman and Littlefield Publishers Inc. Shafer-Landau, Russ. 2003. Moral realism: A defence. Oxford: Oxford University Press. Sherwin, Susan. 1992. No longer patient: Feminist ethics and health care. Philadelphia: Temple University Press. Simmons, John A. 2010. Ideal and nonideal theory. Philosophy and Public Affairs 38 (1): 5–36. Swenson, Kyle. 2017. Who came up with the term ‘sexual harassment’? The Washington Post, November 22. Turner, Leigh. 2003. Zones of consensus and zones of conflict: Questioning the “common morality” presumption in bioethics. Kennedy Institute of Ethics Journal 13 (3): 193–218. Walker, Margaret Urban. 2000. Naturalizing, normativity, and using what “we” know in ethics. Canadian Journal of Philosophy 30 (Supp 1): 75–101. ———. 2007. Moral understandings: A feminist study in ethics. Oxford: Oxford University Press. ———. 2009. Introduction: Groningen naturalism in bioethics. In Naturalized bioethics: Toward responsible knowing and practice, ed. Hilde Lindemann, Marian Verkerk, and Margaret Urban Walker, 1–22. Cambridge: Cambridge University Press. Wittgenstein, Ludwig. [1958] 1973. Philosophical investigations. Trans. G.E.M.  Anscombe. New York: Pearson Press.

Chapter 4

Critical Theoretical Methodology for Nonideal Contributions to Bioethics Alex B. Neitzke

In assessing Karl Marx’s influence on contemporary bioethics, one finds little explicit representation. Marx and Marxism are most often discussed when examining unambiguously economic concepts like property, labor, or commodification.1 In social sciences of medicine, Vicente Navarro (1976, 1985, 1989, 1993) and Howard Waitzkin (1979, 1981, 1983, 1984, 1989, 2011, 2018) offer explicitly Marxist analyses of health care, though their work does not noticeably impact bioethics.2 There is certainly no identifiable “Marxist bioethics” in the same way that one might speak meaningfully about, say, Kantian bioethics. Instead, Marx and Marxism are often used simply as a foil to represent radically egalitarian principles of distribution3 or simplified to allegedly “Marxist” moral imperatives such as “universal noncommodification.”4 But such depictions do not capture what I think to be the normative potential in Marx, which is in his critical methodology or metatheory. It is in such metatheory that Charles Mills (2005) argues that nonideal theoretical approaches distinguish themselves from ideal theory (174), and so it could be that Marx influences bioethics only diffusely through the nonideal methods of critical social theories such as feminism. Mills’s nonideal theory and Marx are both interested not only in actual social conditions that oppress and marginalize, but also in

1  See, for instance, Oliver (1989), Anderson (1993), Radin (1993), Radin (1996), Dickenson (2007), and Phillips (2013). 2  And for a particularly scathing critique of Navarro’s work, see Reidy (1984). 3  See, for instance, Daniels (2008, 18). 4  See, for instance, Radin (1996, 79–83).

A. B. Neitzke (*) Department of Philosophy, Adelphi University, Garden City, NY, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 E. Victor, L. K. Guidry-Grimes (eds.), Applying Nonideal Theory to Bioethics, Philosophy and Medicine 139, https://doi.org/10.1007/978-3-030-72503-7_4

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paying critical attention to the means that philosophers and theorists use in understanding social conditions. I argue in this chapter that Marxian5 theory has more to offer bioethics. It models a nonideal methodology for understanding social practices as constituent parts in a larger systematically structured set of social relations under capitalism. Such work is nonideal in the sense that Charles Mills argues that nonideal theory generates descriptive models of society as it actually is, as opposed to idealizations. In particular, Marx’s critique of political economy offers conceptual and methodological tools for examining health care in bioethics through the lens of its social, economic, and political production relative to the tendencies of capital. Health care requires complex coordinated action to actually produce (and not just “deliver”) a set of goods and services, and so should be understood structurally as a systematically interrelated whole. This is significant because it implies that the behavior or dynamics that constitute the parts of any interrelated whole are best understood in relation to the totality of that system or process. That is, an individual constituent part of any social process is not fully understood until its dynamics are understood as in a systematic relation with that totality or whole.6 This in turn is significant because doing good bioethics arguably requires reliable understandings of how a relevant set of conditions came to be, and how alternative courses of action may influence those phenomena in health care. And because causal responsibility informs assignations of moral responsibility in most cases, accounting for social-structural causal dynamics stands to inform ethical theorizing. By making sense of health care in this way, as an actual social process of production with structural influences over ethically significant interactions within that process, I argue that bioethicists can better contribute to transforming health care practices through their theoretical work. Accounting for structural causal mechanisms in bioethics help illustrate the ways that they influence and shape moral dissatisfactions within health care—the various “topics” or “issues” discussed in 5  I use the term “Marxian” to refer to theorization in Marx’s texts themselves, while I use “Marxist” to refer more to work of theorists (and political or state actors) who follow Marx and attempt to elaborate (or realize) his ideas. Among such Marxist theorists are Rosa Luxemburg, Georg Lukács and Vladimir Lenin. To offer an analogy, Marxian is to Marxism as Benthamian is to utilitarianism. The former singles out one thinker’s work (Jeremy Bentham) and interpretations of it, where the latter names the broader movement of which that thinker is considered a founder or foundational. This is a worthwhile distinction to maintain for Marx, given that the theories and politics of subsequent Marxism(s) are often taken to be more or less identical to Marx’s thought. Comparing this to other founder-movement distinctions helps indicate potential errors in such false equivalence for the sake of doing theory. 6  The concept of social structure is increasingly theorized and utilized in work on gender and race, especially, to conceive of oppressive forces as interrelated and semi-independent of individual intentions or actions. Thus understanding racial or gendered oppression requires understanding the raced and gendered individual in relation to a larger set of social forces that work in concert—as a whole—to marginalize, dominate, or constrain. This echoes fundamental feminist insights in Marilyn Frye (1983, 1–16), which are utilized further in Anne Donchin (2010), Iris Marion Young (2011), and Sally Haslanger (2012, 2016). These authors are especially informative in my descriptions of social-relational structures in understanding social phenomena for normative social theory.

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bioethics. Social-structural understandings of health care can also inform what or whom to target in normative discourse and political action. If a normatively dissatisfactory health care practice is more the effect of social-structural dynamics in its economic production than it is an effect of ethical belief or decision making, then framing them in bioethics as primarily moral or ethical challenges arguably misrepresents reality. If I am correct to suppose that health care’s economic production has systematic structural influence over agents and communities in normatively significant ways, then a descriptive accounting of those processes and their interrelated structural functions can inform more impactful and transformative ethical, institutional, and political and responses. I begin this chapter by briefly recounting the nonideal critique of ideal theory in order to frame the distinction in terms of differing depictions of social reality and what influences its transformation. I then explicate Marx’s critique of political economy to illustrate what I argue to be a nonideal social theory underlying his critique, and draw attention to Marx’s concept of alienation. I argue that these Marxian insights can better inform projects in bioethics by theorizing nonideal descriptive accounts of health care’s social production, particularly as those processes of production interact with the ordinary moral concerns of bioethics. Finally, I outline this methodology with my concept of “social pathologies of health care,” which offer nonideal accountings of the pathological structures taking shape in health care’s actual production as they relate to specific sets of moral dissatisfactions in health care. First, I feel the need to get ahead of a few possible misinterpretations or assumptions about Marx and Marxism in an attempt to avoid potential confusions that can arise in my experience from employing Marx in contemporary bioethics. It is sometimes assumed that offering any “Marxist” or Marx-informed approach to an issue or field is intended to reject other critical understandings as inferior. I believe this assumption may come from one’s familiarity with past scholarly feuds between some Marxists and feminists over whether it is gender or capitalism that is the more (or most!) fundamental source of oppression from which the other somehow follows (or similar debates regarding race-versus-class as fundamental). Yet I think that these debates offer about as much insight as any other attempt at reductive monism in philosophy and ethics—which, as a pluralist, I take to be fairly little. In a context less concerned with defending the one theoretical lens to capture all truth, I offer what I see to be insights from Marx that offer additional and complementary lenses or frames to the toolbox of nonideal bioethicists engaged in critical social theory. These insights are not derived from orthodox Marxist models of class struggle, nor from moral condemnation of markets or exploitation, but instead from Marx’s theory of society and the structures and logic of capitalism. How my interpretations of Marx apply to bioethics, and how it is distinct from class struggle models and mere moral condemnation, should become clearer below.

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4.1  N  onideal Theory and the Paradox of Ideal Theory’s “Realism” In this section, I offer a brief overview of nonideal theory and its critique of ideal theory, paying special attention to work of Charles Mills in order to illustrate a problem that I argue has received insufficient attention in theorizing nonideal theory. I assume that most readers approach this volume already familiar with critiques of ideal theory and more recent calls to “theorize the nonideal,” so I intend only to highlight crucial elements for following my line of reasoning rather than offer a comprehensive review. John Rawls and Charles Mills are arguably responsible for spurring most scholarship under the explicit banner of “nonideal theory.” Rawls (1971) introduces the ideal/nonideal distinction and explicitly identifies justice as fairness as ideal theory (8–9).7 Rawls is often credited for reviving normative political theory in English-­ speaking philosophy, and his ideal methods and assumptions reflect many traditional works of moral and political theory. Some three decades after Rawls’s A theory of justice, Charles Mills’s (2005) “‘Ideal theory’ as ideology” conglomerates methodological contentions from feminism, Marxism, and critical race theory into a critique of the ideal brand of theorizing that Rawls champions. Ideal theorizing generally conceives of normative principles for an ideally just society or ethical relation amid favorable conditions of cooperation where all persons comply with those principles. It theorizes the perfected version of its object of interest, such as a perfectly just society. Mills (2005) identifies and explains assumptions that ideal theories generally share: idealized social ontology, idealized capacities of agents, silence on oppression, ideal social institutions, idealized cognitive sphere, and strict compliance (168–9). Mills then asks his readers to briefly defamiliarize themselves with academic moral philosophy and look over this list again. He supposes your spontaneous response would be something like: “How in God’s name could anybody think that this is the appropriate way to do ethics?” (169). Ideal theory often begins from some kind of theoretical “ground zero,” like the state of nature or the original position (Mills 2007, 112–13). That ground zero provides the logical conditions from which to derive normative principles. But that ground zero is also usually constructed counterfactually in that it abstracts away significantly from social conditions as they actually are. Principles or theories derived from such a ground zero are intended nonetheless to inform actual social and political life, whether in structuring institutions and policies, adjudicating competing claims and interests, or making moral decisions. I believe that the main theoretical insight in Mills’s (2005) critique of ideal theory is in isolating theoretical models by which social philosophers (both political and ethical theorists) make sense of the social world and formulate their normative input. In doing social theory, philosophers assume certain representations of the 7  For a more detailed examination of Rawls’s distinction between ideal and nonideal theory, see John Simmons (2010).

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world that they wish to simultaneously understand and influence through theorization and normative prescription. As with all models, the particular characteristics of the target world that are chosen or excluded for representation reflect the modelers’ judgments regarding what they take to be important (or not) for their ultimate goals. If someone’s model of a geographical area includes roadways, but excludes natural features like wetlands and forests, one might suppose that the modelers are interested in driving a car to get around and judge representations of roadways as the primary means to that end. Thus by examining theoretical models, one can examine underlying assumptions about their modelers’ objectives and motivating value judgments. And if it were the case in this example that the modelers in fact wish to kayak on public waterways for aesthetic experiences of nature, then the road-based model could be critiqued as ill equipped for that purpose. It is in this way that one might understand Mills’s approach to ideal theory. He sets out to consider whether the models in ideal theory are well equipped for the intended purpose of normative social theory, which he takes to be informing social transformation for the better. Mills (2005) identifies two types of general theoretical modeling: descriptive versus idealized models. Descriptive models offer representations of a thing’s essential characteristics and basic dynamics to explain how it actually works, and so they abstract away some non-vital aspects in order to draw attention toward what is of interest for the matter at hand (166). Idealized models, on the other hand, represent an exemplar of what the best possible version of the thing in question should be like, and are thus far less constrained by actual conditions (167). Descriptive models thus abstract without idealizing, while idealized models both abstract and idealize (168; 175). The key distinction between ideal and nonideal theory for Mills turns on the role—if any—given to descriptive, intermediary models of actual social conditions. Nonideal theory constructs descriptive models for understanding the essentials of actual persons, social relations, and societies, and generally places oppression at the center, such as in models of patriarchy and white supremacy (175). Thus, for instance, critical race theory arguably commits greater attention to understanding how racial categories and practices oppress in actual social conditions (descriptive models) than it does to theorizing characteristics or principles of a perfectly raceless society (idealized models). As illustrated above, to evaluate a methodology such as ideal theory in terms of its models relies on evaluating them in relation to the modeler’s goals. Ideal theory’s most common defense as a methodology for normative theory is that we must understand and justify ideals as “where we want to go” in order to knowledgeably try to get there through transformative social action. Rawls (1971), for instance, argues that ideal theory provides “the only basis for the systematic grasp of these more pressing problems,” referring to actual nonideal challenges of injustice (9). Norman Daniels (1985) makes a similar claim when he acknowledges the challenge of applying his ideal approach, which extends Rawlsian justice as fairness to health care. Daniels claims that he is “not an idealist about history,” noting that justification in terms of philosophical moral traditions does not connect efficiently to “the wheels that drive change” in the actual world (229). But he concludes that “if people

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have good understanding of why what they want is right, they are more likely to strive harder for it” (229). However, in evaluating ideal theory in relation to its goals in social transformation, it is precisely with this general line of argument that Mills and other nonideal critics take issue. They doubt the wisdom in abstracting away from real problems and challenges for a theoretical ground zero or idealization when the entire theoretical apparatus is meant to guide responses to those very problems that are set aside in ideal theory. Critique of ideal theory goes beyond just a critique of ignorance— ignoring conditions that theory is meant to address—and extends also to claims of corruption or bias. Setting aside actual social conditions, it is argued, reflects a privileged position within social hierarchies precisely because it is easier to ignore or never notice social conditions that are in one’s favor. The resulting bias in theory then helps to reproduce those unjust social conditions because they are depicted as anomalous and are set aside from rigorous theoretical scrutiny. Mills (2005) argues that ideal theory “tacitly represents the actual as a simple deviation from the ideal, not worth theorizing in its own right” (168), and thus rationalizes the status quo (181). By working in an idealized conceptual space, theorists nonetheless smuggle in biased assumptions still influenced by those oppressive systems, which then act to normalize or justify those oppressive social conditions through their tacit presence in ideal theory. Mills’s articulation and justification of nonideal-theoretical methodology is best understood as an amalgamation of the scholarly discourses that he is most in versed in: Marxism, feminism, and critical race theory. He calls on those intellectual histories in formulating what makes nonideal theory distinct from and preferable to ideal theory. As Allison Jaggar (2000) observes, feminist philosophy sets out to identify and challenge masculine bias in theory itself and the ways that such theory rationalizes women’s oppression in the actual social world (453). Margaret Urban Walker (2007) argues that the decontextualized universalities of ideal moral theory uncritically reproduce the specific positions of a white male aristocracy or bureaucracy as the norm, and in so doing both exercise and reinforce those social privileges and their corresponding oppressive structures (60). Ideal theory and its willful ignorance of actual injustice is clearly a non-starter for feminist theory, which Joan Tronto (1993) argues “grows out of the attempt to end women’s marginal status in society,” which is to say actual gendered injustice (15). All of this is to say that it is clearly not in the interest of women, the poor and working classes, or persons of color to simply ignore oppressive structures and histories of repeated domination for the sake of ideal theorizing (Mills 2005, 172). Instead, those histories and actual conditions are often the starting point and the central set of social phenomena to be understood through nonideal theorization from the margins. Yet there remains a deeper puzzle in the critique of ideal theory. Mills has the not-so-easy task of philosophically articulating what exactly goes awry in ideal theory from the standpoint of critical social theorists disappointed in its underperformance in addressing oppression. Mills draws attention to ideal theorists’ tendencies to treat their idealized concepts as the proper instantiations of real underlying matters. It is thus paradoxically ideal theory’s pretensions to some version of

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realism that makes it problematic from the standpoint of critical theorists concerned with social oppression. Regarding this claimed realism, John Simmons (2010) notes that Rawls takes justice as fairness to theorize a “realistic utopia” (7). This refers to the best conditions that could realistically be hoped for when “taking men as they are and laws as they might be” (Rawls 1999, 7).8 Laura Valentini (2009) notes that ideal theories are still “fact-sensitive” in that they are meant to perform guidance and legitimation functions for actual governance or judgments, not simply to depict pure principles altogether independent of factual restraints (334–7). Because ideal theorists take their work as “realistic” in this minimal sense, and because of the biases arguably contained therein, Mills (2005) argues that their idealized models are “a nonrepresentative phenomenological life-world (mis)taken for the world” (2005, 172). So despite the fact that ideal theory articulates what ought ideally to be, its shortcomings stem in large part from a tacit depiction of the social world as it is. Abstract idealizations are taken as the necessary foundational means to actual social transformation. Thus ideal theory still presupposes tacit judgments about the way the world actually is apart from idealizations. These judgments are reflected in the characteristics of the world they choose to theorize (or not) in their models and the dynamics assumed to pertain relative to those set aside. So it seems that there is actually a kind of implied descriptive model tacitly at work in ideal theory that does not come directly from idealized models themselves, but instead from the presupposed connections between theory and actuality. That is, this error in ideal theory comes in part from the task that theorists take themselves to be performing in the act of theorizing, which is to say from this aspect of their methodology or metatheory. Even though ideal theorists do not explicitly espouse idealist philosophies (meant in a general sense of understanding reality as purely mental phenomena) they nonetheless depict their idealizations as tapping into some basic part of social and political reality. This is because they claim that idealization offers the necessary foundation for understanding and transforming society. They theorize in such a way that assumes shared moral understandings, beliefs, attitudes, and/or judgments to be the “prime movers” driving social practice—as constituting something essential to social reality. Thus, ideal theorists perceive themselves as contributing to transformative ethical and political projects by perfecting idealized conceptual apparatuses related to those shared moral understandings, beliefs, attitudes, and/or judgments. While I believe that Mills illuminates something insightful in drawing attention to the role of descriptive accounts of actual social conditions, I believe that something more at hand helps explain ideal theory’s metatheoretical methodological flaws, which have both epistemological and normative consequences not fully captured through description alone. I argue in the next section that Marx’s Critique of political economy offers a lens through which to better understand these flaws, their significance, and their alternatives for social theory.

 Simmons (2010) notes that Rawls invokes Rousseau with this phrase (7).

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4.2  M  arx’s Critique of Political Economy (and Ideal Theory) and Accounts of Structural Alienation In this section, I explicate Marx’s critique of political economy in order to argue that it illustrates a critical error in ideal theory’s seemingly paradoxical “realism” outlined above. By arguing that ideal theories are the necessary or best foundation for normatively guiding actual social practice, ideal theorists depict the world as primarily determined by underlying mental abstractions. That is, ideal theoretical modeling reflects a judgment (or assumption) that conceptual abstractions and logical processes of judgment are the most important levers for social transformation, and thus that the world reflects an underlying abstract, ideal (meant here as in mental or cognitive) foundation. The goal, then, becomes transforming or reshaping that underlying foundation of beliefs and judgments along better lines (guided by logical entailments from idealized models of their perfected versions) in order to produce improvements in actual social conditions. My contention for bioethics, which I elaborate in more detail in the next section, extends from the nonideal and Marxian critiques of this ideal methodology. I argue that many “mainstream” or “traditional” bioethicists assume a similarly ideal underlying social schema in their theorizing.9 Much of the work in bioethics takes its primary task to be reshaping or clarifying understandings of morally relevant concepts and assessing the validity of decisional logics that underlie health care and bioscience practices. Bioethicists do this conceptual work to both understand normative dissatisfactions or dilemmas in health care and also to guide transformative responses to those dissatisfactions or dilemmas. Projects in bioethics following this pattern ultimately reproduce ideal theory’s mistakes outlined in the previous section. I argue that a Marxian framework contributes something to bioethics that is not systematically present in most nonideal social philosophy, namely, a sustained and systematic critique of capitalism itself. My general sense is that many bioethicists, practitioners, patients, and policy makers already believe to some extent that significant moral dysfunctions in health care stem from, or are made worse by, the coercive influence of capitalist dynamics (even though authors may rely on general terms like economics, markets, financialization, commercialization, etc.). Yet under mainstream bioethics frameworks, these critical observations and normative arguments amount to a dispersed collection of moral protests that do not fundamentally challenge the legitimacy of capitalism itself—much less as the primary means of producing health care. And this disconnection, I argue, comes precisely from this traditional methodological approach forcing their analyses to take moral attitudes and thought processes of individual moral agents as their object of concern. Such

9  I use such modifiers as “mainstream” in part to acknowledge that there are already bioethics scholars doing alternative nonideal work less subject to my critique. Indeed, the present volume is clear evidence of this, as are my numerous attempts to draw connections to such authors and theories. My critiques of bioethics do not claim to apply universally, but instead more to predominant thinkers and approaches, and to common underlying metatheoretical assumptions.

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accounts thus present health care as a universal human activity, driven by moral attitudes and the special moral character of healing, while downplaying or bracketing the actual economic activity producing health care as a material set of goods and services—and thus miss the critical potential of a deeply structural critique and transformation of health care. But let us remember what such bioethical assessments are doing. In my home the United States, authors who appeal to a fundamental moral nature or essence of health care and healing practices are looking at a health care system wherein services and goods are exchanged for money, paid primarily through a system of private insurance in pursuit of surplus and profit, and influenced by a pharmaceutical industry with immense profitability for wealthy investors (and thus important for the continued productivity of capitalist wealth production). How can bioethicists look at a set of practices materially produced and carried out in such a way, and yet choose to set all or most of this aside in favor of the idealized moral nature of a “real” essential abstract practice underneath it? Before a more in-depth application of Marxian insights to bioethics, this section explains Marx’s social theory, which follows from his critique of political economy. Marx argues that sociality and the concepts we use to make sense of our social world are in fact always already informed and shaped by our surrounding social, economic, and historical context. Intellectual endeavors aimed at understanding social phenomena must therefore account for this relational nature of our thinking as social animals occupying a conceptual world of our own collective making. Yet one instead sees disciplines like economics—and bioethics, as I argue in the next section—treat their object of study as varying forms of eternal human nature or activity. So the actual relativity of their endeavor becomes obscured because of their pretensions to universalism. Yet, by understanding the moral world as in large part enacted through social activity itself, our moral understandings take a different form. When the political economist takes her or himself to be studying capitalist economic phenomena, not universal human activity, then one not only forms a more reliable epistemological understanding of the social world but one also gains better insights into how to transform social conditions as a part of one fluid and co-­ constituting praxis. I now turn to a more detailed examination of Marx’s thought. The metatheoretical significance of Marx’s Capital project10 is reflected in its subtitle: A critique of political economy. This critique is best understood as an early embodiment of methodological conjectures driven home in nonideal critical social theory that comes after Marx. Namely, there is critical power in depicting or

 References to Marx’s Capital are often directed only at its first and best-known volume, which was the only volume published in Marx’s lifetime. It is focused primarily on the capitalist process of production. A posthumously published second volume (Marx 1992) analyzes processes of exchange and circulation in markets, and a third volume (Marx 1991) is especially concerned with finance capital and surplus value production in the cyclical workings of the capitalist system as a whole. Marx had originally planned six volumes in total for his Capital project that would include, among others, analyses of landed property, the state, international trade, and the world market (Heinrich 2013, 200).

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e­ xplaining the ways that social systems that are ordinarily taken for granted as natural or inevitable (like capitalism, gender, race, or constructed social environments) are in fact the contingent results of a particular social historical process rather than instantiations of essential human activity or biology.11 Marx contends that classical political economists (and arguably also many contemporary neo-classical economists) approach their subject of inquiry in universal terms as the generalized human challenge of allocating scarce resources as the means to achieving competing ends (often personified in competing individuals). The categories and dynamics that follow—such as capital, commodities, market competition, rational self-interest, wages, supply/demand forces—are then taken up in economic theory as manifestations of eternal, objective processes spanning historical phases and thus predating capitalism. This is all to say that political economists, and many contemporary economists by extension, take themselves to be uncovering the workings of an essential underlying realm of economic activity simpliciter, rather than participating in a kind of sociological study of a particular, contingent economic mode of production called capitalism. Marx rejects this understanding of political economy’s theoretical task.12 Instead he argues that an economic mode of production like capitalism is a complex of “individuals in mutual relationships, which they equally reproduce and produce anew” (Marx 1993, 712). Understood in this way, capitalism as a mode of production is an ongoing social construction best understood relationally as a contingent social process, rather than a manifestation of essential human activity. This has radical political implications, then, because it understands capitalism as a system that could in principle be overcome—thus denying the popular mantra for capitalism’s apologists that “there is no alternative”.13 Marx (1993) argues that, for political economists, “it must not be forgotten that their subject—here, modern, bourgeois society—is always what is given, in the  Marx generally avoids outright normative or moral condemnation, in favor of more anormative description. The present chapter does not permit a deeper exploration of this tension, however. For an account of anti-normativity from Marx to Foucault, and a Foucauldian argument against normative political theorizing, see Kelly (2018). See also Seyla Benhabib (1986) on the methodological foundations of Marxist and critical theory, including its anormative dimensions in defetishizing and immanent critique. 12  It is worth noting that, despite not identifying as Marxist, the philosophy of economics might be moving closer to Marx on this claim—even if the field of economics itself is not following suit. In the introduction to the Oxford handbook of philosophy of economics, editors Harold Kincaid and Don Ross (2009) argue: “If it becomes widely recognized in economics, as we think it should, that methodological individualism is an ideological or philosophical prejudice rather than a scientifically justified principle, then an eventual fusion of economics and sociology seems to us more likely than the much-prophecied [sic] merger of economics and psychology” (18, [my emphasis]). Methodological individualism here refers precisely to the claim that social and economic phenomena are properly understood when reduced to individual actions and therein to the cognitive activity of individuals. Thus individual cognition, judgment, and action are taken as the underlying drivers of economics, and thus capitalism and society itself. 13  For an alternative to capitalism and a response to the “TINA argument” (“there is no alternative”), see Schweickart (1993, 2017). 11

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head as well as in reality” (106). Marx claims that one should understand the theoretical activity of social inquiry “in the head” as already part of the very social conditions that it aims to grasp and theorize. When merely identifying and understanding social and economic concepts, the economist does so in an already capitalist sort of manner in that many of their assumptions and ways of thinking are constituted by their social-economic existence and upbringing, including the very mode of production they wish to study. In this claim Marx attempts to dissolve the theoretical-practical divide that mirrors the ideal-nonideal divide maintained in ideal theory. I believe this mirrors claims that one sees theoretical patriarchy and theoretical white supremacy in Western and Anglo philosophizing. Marx argues that political economists fail to recognize the theoretically bourgeois or capitalist nature of their concepts and inquiry, and so their conceptual economic models also offer at best “a nonrepresentative phenomenological life-world (mis)taken for the world” (Mills 2005, 172). Marx ultimately argues that understanding social activity and particular practices (such as health care) requires understanding that society’s predominant mode of production, which refers to the productive forces or processes and social relations that reproduce the material conditions of that social formation.14 Capitalism is a mode of production in that one sees its forces and relations—market exchange, wage labor, commodity production, private ownership and finance of means of production—as the predominant means of getting things built, producing goods, transporting people and goods, feeding people, and reproducing populations. Marx (1993) argues that the predominant mode of production in society “is a general illumination which bathes all the other colours and modifies their particularity. It is a particular ether which determines the specific gravity of every being which has materialized within it” (107). Capitalist production for exchange, profit, and growth is among the primary social-structural components necessary to understand social relations and individuals within capitalist society. By saying that a mode of production is an ether determining the specific gravity of beings within it, Marx claims that capitalism is a major structural component helping constitute the social-ontological reality of those things we might wish to call “social facts.” To ignore this component is to ignore a set of ubiquitous structural forces shaping anyone’s social existence, forces which are as important as gravity is for understanding one’s physical existence. Thus understanding Marx’s critique of political economy quickly brings one to confront what is better understood as a theory of social ontology, which is defended and theorized most explicitly in his Grundrisse (1993) and embodied in the three volumes of Capital (1990, 1991, 1992). Social ontology is broadly understood as the philosophical study of the nature and properties of the social world, or the phenomena and entities that arise from social interaction (Epstein 2018).15 Marx can be  See Althusser (2014) for a more detailed consideration of the Marxian notion of modes of production. 15  For contemporary Marxian approaches to social ontology, see Feenberg’s notion of Marx’s “philosophy of praxis” (2014) and Krier and Worrell (2016). For other contemporary approaches, see 14

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understood as calling for the social ontological study of capitalism and contemporary social systems as the structural determinants of “social facts” such as economic value or the commodity form, but also categories such as gender or race.16 I thus argued that Marx-informed projects that elaborate a descriptive structural social ontology offer a critical alternative to ideal theory’s tacit social ontology in its proclaimed realism. I argue above that ideal theory presupposes a fundamentally ideal or conceptual basis of social formations and processes, and thus ideal normative theory is understood to be working with the decisive “stuff” determining social life itself. Yet nonideal theory—and Marx in particular—disrupts this picture by denying this particular understanding of the decisive link between idealizations and nonideal social realities. Nonideal theoretical understandings of social systems, processes, and institutions require theorists to go beyond the level of individual judgments and pure conceptual abstractions in order to grasp the objective causal influences of social structures. The latter are perpetuated through social actions working in tandem and recognizable only when grasped in relation to a structured whole.17 I regard this strain in Marx as akin to feminism’s rejection of the claim that gender norms are “natural” and necessary reflections of biological sex or human need, and instead the expressions of ongoing social-relational interactions shaped by relations of power best grasped in their totality (and informed by their history). The resulting understanding is of social activity that produces and perpetuates gender as a social structure exerting objective oppressive force on those within it.18 The abstract categories employed to understand those social relations must therefore be understood socially and structurally in direct relation to the actual social conditions that co-constitute them, even though they are widely taken as natural or given. In the same way that feminism illustrates the flaw in assuming gender relations as the inevitable reflection of the universal phenomenon of biological sex, so too Marx rejects the assumption that capitalist society is merely a reflection of an inevitable

Sally Haslanger (2012, 2016) and her interlocutors (I believe that both discourses stand to benefit mutually from greater dialogue with one another). 16  This is significant because Marx’s work is often understood as having turned away from philosophy after his early humanistic work (such as the 1844 Economic and philosophical manuscripts) and turned toward purely descriptive social science in works like Capital. Yet the somewhat recent discovery and 1973 English translation of Grundrisse is widely said to help reveal the truly philosophical nature of his later work and its links to the early humanism. 17  On social ontological theory in Marx, see Michael Thompson (2016). For another insightful treatment of social ontology and social-structural explanations of phenomena, see Haslanger (2016). 18  I find Marilyn Frye’s (1983) theorization of oppression as analogous to a birdcage (1–16) to be especially insightful regarding this structural notion of gender, understood in Haslanger’s (2012) words as “a social category whose definition makes reference to a broad network of social relations” (86–7), or what I refer to here as a totality. To say that gender oppression is like a birdcage is precisely to say that its oppressive effects are only adequately grasped from a holistic vantage point. This reveals social oppression as a plurality of constrictive social forces working systematically or in concert, which can become invisible when examining only an individual barrier or setback.

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set of human circumstances involving psychological responses to scarcity and competition. This is where I contend that there is a lesson for nonideal theorists and bioethicists. By contending or merely presupposing that normative challenges in capitalism, gender norms, or health care practices reflect theoretical puzzles to be solved in thought, without sustained attention to their underlying social conditions, ideal theorists arguably naturalize19 their systemic oppressive effects. And, as the feminist theorist Marilyn Frye (1983) contends, “for efficient subordination, what’s wanted is that the structure not appear to be a cultural artifact kept in place by human decision or custom, but that it appear natural” (34). When gender, race, or capitalism are taken to reflect natural or given categories of necessity, or puzzles to be solved in an abstract realm of idealized modeling, it is more difficult to contest and resist them (since that would be like attempting to resist something like gravity or logic itself). Thus I contend that depicting health care practices as mere reflections of abstraction and thought in mainstream bioethics similarly naturalizes those practices. In so doing, bioethicists largely set aside examining health care’s actual production and so obscure opportunities to contest and transform dissatisfactory facets of health care that follow from its contingent social production. Marx’s work should thus be understood as philosophical critique of a kind of ideal methodology and its underlying assumptions about the nature of the social world and agency of individuals and collectives within it.20 Critical social theories attempt to understand the co-constitution of ideas and abstract categories with corresponding material and relational practices. This is associated with Marxist “historical materialism,” but is arguably reflected in any critical social theory predicated on the social construction of its object, whether that be gender, race, sexuality, or disability. Marx’s critique of political economy is not simply an alternative economic theory, nor simple moral criticism of capitalism, but a call for a fundamentally different critical social philosophy. This discussion of Marxian critique leaves open the matter of how critical social theory and a Marx-inspired bioethics might derive normative content without presupposing some universal abstract element in its methods. This is a challenge because the task of nonideal theory becomes largely descriptive regarding social  I should differentiate my use of “naturalize” here from calls to “naturalize ethics” and bioethics. See Alison Jaggar (2000), Margaret Urban Walker (2002, 2007), and Lindemann et al. (2009). One naturalizes gender, race, or disability (in the bad way that I intend here) by depicting them as reflecting biological sex, genetics, or malfunction, respectively. Such moves reproduce a popular tacit claim that what is natural is also what is good—or at least what should be accepted because it cannot be changed. Thus naturalizing capitalism, gender, race, or ability tends to protect the status quo from critical scrutiny. On the other hand, calls to “naturalize ethics” aim to theorize moral understandings or epistemologies together with corresponding and co-producing practices in a critical, self-reflexive, and interdisciplinary accounting for the actual practices of moral categories like blame, responsibility, accountability, etc. The latter kind of naturalizing work in ethics clearly motivates and informs nonideal theory, where the former is precisely the problematic kind of naturalizing to which nonideal theory is largely a reaction. 20  See Lukács (1971, especially 197–209), Heinrich (2012, 29–38), and Feenberg (2014). 19

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conditions as they relate to abstract categories of thought. But I contend that Marx’s alienation concepts offer one means for social theorists and bioethicists to offer normatively potent analyses despite a more descriptive bent than traditional philosophical ethics. Alienation for Marx refers to his claim that “capital acts as an ever-expanding power over everyone within the capitalist system,” despite being the product of social perpetuation and human labor (Blackledge 2012, 73). I include a cluster of concepts among the general theorization and critique of alienation stemming from Marx, including Marx’s alienation and fetishism, Lukács’s reification, and Habermas’s colonization of the lifeworld.21 These concepts share in theorizing capital’s tendencies to overtake collective moral and deliberative influence over social life and subject them to the self-moving appropriative logic of capital. Thus alienation seems to hold up the apparent contradiction or difficulty in doing idealizing normative ethics in modern society because individual and collective capacities to enact their moral and political ideals (the stuff of ideal theory) are limited by complex structural systems functioning seemingly with their own objective demands and logics (revealed through social ontological descriptive modeling).22 To conclude this section, I argued that Marx’s critique of political economy offers a framework for understanding an alternative social-ontological understanding of society and sociality itself, which, when placed in dialogue with contemporary ideal theory, helps critique the latter’s claimed realism. Marx challenges this realism in that he denies political economy’s (and ideal social theory’s) often presupposed claim that their theorizing deals in a generalized abstract substratum of human social activity simpliciter, which is best influenced by similarly generalized abstract idealizations meant to guide individual cognitive decisions. Marx instead contends—similar to Mills and contemporary critical social theories like feminism—that such assumptions misconstrue as essential what is in fact a historically contingent ongoing practice of social reproduction. In place of ideal theorizing, and the assumption of this essential ideal substrate, Marx-informed nonideal theory aims to understand the ways that abstract concepts are co-constituted in actual social conditions and structures. Any examination or theorization of abstract

 See Marx (1990, 163–177, 716; 1993, 157); Lukács (1971); Habermas (1987, 332–73). For explication of alienation in Marx, see Blackledge (2012, 87–91). On reification and Lukács, see Feenberg (2014, 61–89). For an assessment of Habermas’s colonization thesis as a reification concept, see Jütten (2011). 22  For an attempt to theorize alienating effects of social-relational structures as they relate to justice and moral responsibility, see Alison Jaggar (2009) and Iris Marion Young (2011). Another noteworthy work in nonideal theorizing in alienated modernity is Alexis Shotwell (2016). Shotwell notes the nonideal nature of contemporary developed-world existence: “there is no food we can eat, clothing we can buy, or energy we can use without deepening our ties to complex webs of suffering” (5). She asks in response, “what happens if we start from there?” (5). Shotwell’s nonideal aim is “to shape better practices of responsibility and memory for our placement in relation to the past, our implication in the present, and our potential creation of different futures” (8). Her theorizing against purity therefore is an instance of grappling critically and descriptively with actual alienation while deriving normative content. 21

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concepts, like those of ethics and bioethics, should grasp them as relationally emerging from those social contexts and structural systems. Thus Marx-inspired bioethicists should understand abstract concepts and dilemmas in health care (including moral ones) in relation to health care’s actual social context. In the next section, I look to take this more general social theory even closer to the ground by explaining how more precisely the concept of alienation and Marx-­ informed nonideal theory can be insightful for bioethics and health care.

4.3  A Nonideal Marx-Informed Critique of Bioethics I see tensions between traditional bioethics and Marxist social theory that are similar to those between ideal and nonideal theory, respectively. Like Mills’s critique of ideal theory and Marx’s critique of political economy, this tension arises from how bioethicists treat their conceptual categories and their task relative to actual health care practices. Many bioethicists, I argue, take their subject matter for granted by depicting “moral dilemmas” in health care as clashes of abstract principles or underlying moral categories. Yet we ought to understand health care also in terms of a productive social enterprise within an economic mode of production, since health care must always be “delivered” in some material form of goods and services. Health care delivery is in fact health care’s production. And from a Marxian perspective, the characteristics and logics of these social forces, processes, and relations that produce and reproduce health care as a material practice should be understood in reference to normative concepts and challenges that “color their illumination,” “modify their particularity,” and “determine their specific gravity”—to echo Marx’s language quoted above (1993, 107). Health care’s production helps determine the particular characteristics of its social reality in ways that are significant and informative for normative bioethics. I contend that health care’s relations to capitalism in particular not only produce normatively dissatisfactory consequences (such as poor health outcomes, inadequate access to care, perverse incentives, overprescription, and exorbitant prices), but also seriously undermine the very methodological basis of health care ethics. Effects of social-relational structures, such as economic influences, often undermine or disrupt attempts to address moral dysfunction in health care. This is to say that capitalist influences significantly alienate health care from moral and political agency. Marxian models offer methodologies and concepts (such as alienation) that better theorize social realities of health care. The thrust of my argument is therefore similar to that of Mills and Marx: if bioethicists wish to transform health care practices for the better, then accounting theoretically for the social conditions of those practices as they actually are, and how they condition moral conflicts and our moral categories, is a preferable route to achieve this transformative goal. Bioethicists should therefore take part in nonideal accounting of health care’s relations to capitalist social relations in its actual production—which is to say bioethicists ought to account for the sources and

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consequences of health care’s alienation. I contend that many of the same capitalist forces and logics that alienate the social world from individuals—who must nonetheless confront it to survive—also alienate the social production of health care from its meaningful normative influence by patients and practitioners. So when theoretical bioethics simply presupposes a connection or transitivity from moral belief to health care practice and judgment, theorists commit a similar error to ideal theory in misrepresenting social reality as abstract or ideal at its base. This is not, however, a purely moral-epistemological mistake, since this misrecognition also fails to systematically recognize and problematize the alienating effects of the capitalistic conditions of health care’s social production. If it is the case that capitalism as an actual set of social-structural processes—not a purely symbolic conceptual schema—subverts the moral lives of social actors, then capitalism is a kind of moral agent relationally acting upon others. Thus, understanding capitalism itself—which I argue a Marxian framework takes to be a practice in mapping and understanding structural tendencies taking shape in capitalist economic activity—is a task in understanding an active (structural) moral actor of a sort. To understand alienation in health care is thus to understand forces that prevent the realization of what many bioethicists merely presuppose: individual and collective moral beliefs and judgments translating straightforwardly into transformative action and practice. I therefore contend that a Marx-inspired bioethics should seek to map and account for social-economic processes producing health care in order to identify and map the structural forces within them that alienate health care from the meaningful influence of authentic moral values. I explain and support these contentions in this section, and in the section that follows, I illustrate how these largely descriptive understandings of health care can nonetheless inform normative work in bioethics. Many theoretical bioethicists merely presuppose an underlying transitive efficacy from theory to practice, from idealized ‘ought’ to ‘is.’ By this I mean that alterations to individual moral beliefs resulting from reasoned argument are presupposed to produce change (at least potentially) to institutions and practices. In so doing, bioethicists depict individual actions and social institutions as reflecting moral beliefs—and thus arguably reproduce the alleged “realism” of ideal theory. That is to say, health care as a social activity is methodologically presupposed by many bioethicists as primarily the enactment of foundational ideas and justificatory beliefs. By affecting moral belief through normative argument, ethicists see their work as a foundational step toward affecting practice; however, by failing to better theorize the actual social conditions that co-constitute their moral concepts, such bioethicists reproduce the errors of political economists and ideal theorists. One sees idealizing assumptions, for instance, in Tom Beauchamp and James Childress’s (2019) notion of common morality as the focus of their principlism. Common morality for them is “the set of universal moral norms shared by all persons committed to morality” and includes a virtue component of shared moral character traits (3). Beauchamp and Childress make clear that “common morality comprises moral beliefs (what all morally committed persons believe)”.(4) By identifying and weighing those beliefs in reference to a given context, common morality

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is meant to guide action and thereby affect or transform practice. In addition, Norman Daniels (1985)—who extends Rawls’s justice as fairness to norms for health care justice—understands his ideal approach as offering moral guidance to policymakers in transformative times by offering philosophically justified responses to broad normative questions like, “How much equity should there be?” (x). Daniels recognizes the difficulty in ideal theory for nonideal pursuits, however. Yet he responds in a relatively vague appeal to virtues and wisdom of theorists, arguing that “the applied philosopher must be clear about what policy question is really being asked and then be sure he[sic] knows the limits of his[sic] theory and its application” (229). He then claims that “we owe a special effort to develop better philosophical equipment to address questions in a non-ideal world,” but that his work is not intended for that purpose (229). Thus, even by his own admission, Daniels does not attempt to overcome the challenge of using ideal theory as a guide when the social realities are far from their idealizations. While these authors do not exhaust the theoretical makeup of bioethics, their work is highly influential in shaping debates even among those who criticize their work. Moreover, I offer these authors to illustrate certain ideal presuppositions about the task of bioethics in relation to an abstract substratum more than the substantive representatives of all theoretical approaches to bioethics. Allow me to suppose an example to illustrate my misgivings with more traditional moral frameworks in bioethics, which I contend assume an underlying transitive efficacy from theory to practice similar to ideal theory’s alleged realism. Some health care ethicists argue that a more holistic conception of patients should guide health care practices in order to reverse the ongoing dehumanization of technologized and specialized medical care. This is a general form of a rather common criticism of biomedicine (see, for instance, Mead and Bower 2000; Todres et al. 2007; Entwistle and Watt 2013). Now suppose that a physician named Dr. Moral is convinced by these arguments and attempts to integrate a more holistic model of the patient into her practices. If Dr. Moral is a general practitioner, she might commit more time to counseling patients on treatment options or to achieve healthier lifestyles. Such person-­centered practices would either replace or supplement more technological tests and interventions that critics argue dehumanize medicine. For instance, Dr. Moral is aware of evidence that benefits of cholesterol-lowering statin drugs, in terms of mortality, are similar to those of exercise as a secondary prevention of cardiovascular disease (Naci and Ioannidis 2013). So she decides to spend more time counseling her patients with early or mild heart disease indicators. Her goal is to better inform patients of the limited benefits of statins and advise lifestyle changes, including exercise. This will prevent deaths in addition to promoting the broader benefits of exercise, which also arguably treats her patients more as persons than numerical indicators. Now what are the likely consequences of Dr. Moral enacting ethical prescriptions regarding patient centeredness? One is obviously more time with each patient, and thus an overall decrease in patients seen per day. This alone can have ripple effects in a few other areas. If she is a member of a health maintenance organization

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(HMO), or if her hospital or medical group contracts with preferred provider organization (PPO) insurance plans, she will likely receive pressure from a manager to reverse this decrease. From the standpoint of managed care plans, this physician is not maximizing the hospital or group’s efficiency. By prescribing fewer tests and interventions, hospitals and groups also have fewer opportunities to receive payments from insurers, which fund operations and help recoup expenses. There are other ways that Dr. Moral’s decisions can work against her. If she forgoes prescriptions in favor of more holistic means for marginal cases (diagnoses like pre-diabetes or high blood pressure), then she may find herself going against established standards of care. Authoritative councils—often with industry-employed physicians sitting on them—establish standard treatments corresponding to certain diagnoses. When standards are set, a physician’s failure to adhere, while within the grounds of professional autonomy, could subject her to penalty in the form of lowered physician grades from both hospitals and insurers. This in turn can also reduce her pay or institutional revenue through pay-for-performance programs (Hunt et al. 2012, 455–6). Failure to adhere might also lead to insurers or Medicare refusing to cover the treatment or reimburse the hospital. Grades may also influence a physician’s ability to continue accessing hospitals, working with insurers, and staying in medical groups, and may be seen by patients choosing a physician through insurer websites. Because these standards can be influenced by the pharmaceutical industry, standards of care themselves—initially intended as a patient protection mechanism—are influenced by the powers of capital and profit production (Choudhry et  al. 2002; Greene 2007; Oldani 2010). In this example we see an individual’s attempt to realize moral norms from an ethical concept, like person-centered care, lead to serious frictions from social-structural constraints that hamper, if not eventually prevent, her realization of moral beliefs. Like understanding autonomy relationally,23 understanding health care economically, structurally, and social-relationally, by grounding its theorization in models of the actual processes that produce it for patients and populations, reveals contradictions between moralizations of bioethics and health care’s social reality. Simply assuming that a conceptual reinterpretation of the meaning of “patient-centered care” can transform health care practices through better-informed judgments by practitioners or patients overlooks the social conditions available through which to treat the patient as a person—and often the social conditions that brought about the problem of dehumanized care in the first place. When health care is produced in a social context in which multiple contributors and processes operate with the patient playing the functional role of profit-generator through their consumption of goods and services, then this arguably constrains and contorts the possibilities for realizing anything resembling the normative intentions of truly patient-centered care. Notice here that a Marx-informed bioethics does not necessarily reject patient-centered care as a normative ideal. Mills (2005), too, claims that such “ideal-as-normative”

 On relational autonomy as a nonideal account of autonomy, see Meyers (1989), Mackenzie and Stoljar (2000), and Donchin (2001).

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thinking is uncontroversially necessary for social theory (166). Instead, a Marx-­ informed approach takes issue with bioethicists discussing and theorizing patient-­ centered care and similar ethical concepts without also accounting for their social context of production. A perfectly articulated and justified conceptual definition of idealized person-centered care does little to substantively disrupt or call any attention to what I argue is the patient’s actual social function as a resource for profit-­ production. It is from a nonideal structural perspective that such patterns could become visible and in turn become the target for normative transformation. Marx’s project of critique maps reified elements of capitalist social relations that alienate individuals and collectives from influence over their collective social life, and which nonetheless determine much of their individual life conditions. Marx-­ informed projects in critical bioethics can potentially do something similar, taking a particular focus on the social institutions and practices of health care. In the final section, I outline my substantive model for Marx-inspired bioethics by introducing my concept of social pathologies of health care.

4.4  S  ocial Pathologies of Health Care as a Nonideal Theoretical Model for Bioethics Allow me now to articulate my call to action for a nonideal “Marxist bioethics” that follows from his conceptual framework. Such projects should attempt to understand health care as an actual social process as it is materially produced and made available as a good or service for patients and populations. This could include analyses of health care labor, purchasing, finance, health care as a source of profit and wealth, research and development, regulation, interrelations with the state, interrelations to other corporate or economic sectors, and so forth. To have the desired insights, however, these analyses must be structural in that they aim to grasp processes of health care production from the standpoint of the systematically functioning whole of capitalism. Among other things, this asks, “What does health care look like from the standpoint of capitalism?” Because capitalism is the dominant mode of production in most every part of the world that bioethics touches, such an analysis should take an understanding of capitalism as a central analytic component to responsibly approach its object. Morally significant patterns and new insights take shape when looking at health care from the standpoint of capital rather than through moral idealization. And this is all the more insightful for the United States, where capitalist markets and profit are arguably the most involved in health care among the wealthiest countries. Comparing the structural tendencies and dynamics of capitalism to patterns identified in the productive dynamics of health care can yield new insights for bioethics to better recognize the role that those processes play in constituting and shaping moral dissatisfactions that bioethics seeks to understand and address. The goal is to examine normative deficits in health care as manifestations of dysfunction in social

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conditions of its production. When such analysis finds plausible reasons for a normative deficit being caused or shaped by capitalist and surplus-driven forces or logics involved in health care’s production, then one has identified what I call a social pathology in health care.24 Marxian alienation and reification are often at play in social pathologies because they represent instances where the economic demands or influences of profit and monetary efficiency decouple health care practices from meaningful normative influence of patients, citizens, and practitioners. I argue that identifying and examining such pathologies has considerable potential for contributing to transformative normative action compared to construing dissatisfactions and dilemmas as manifestations of abstract moral conflicts to be remedied through idealizing theory. I would now like to get more concrete and briefly explain a handful of social pathologies of health care that nonideal critical bioethics projects can further examine and theorize. Each individual pathology can be analyzed in much greater detail—some could be subjects of entire books. Thus I offer only a sketch to expand on the concept. To begin with, we can understand the commodification of health care and the valorization of medical labor as two overarching pathologies. Each refers to the many ways that health care services and labor are increasingly rendered productive (for capital) in the sense of producing monetary value or profit. Commodity production and the requisite labor power function under capitalism as the means of producing surplus value for capitalist enterprises, which contribute the profits that keep capitalism as a whole humming. I argue that the multiplication of acts of exchange between parties motivated by profit in the production of health care services contributes to a social-pathological form of commodification, where the structural demands of profit production influence and shape the moral nature of health care practice. This influence does not simply affect an individuals’ moral thinking or shared understandings, but follows instead from the systematically interrelated productive activity itself. The systematic functioning of the integrated whole of productive activity acts as a kind of moral agent in a social-structural relation to patients and practitioners. From this structural perspective, a physician’s relation to profit-­ producing mechanisms in health care, including biotechnologies and pharmaceuticals, is scarcely different in form from other capitalist ventures. As large hospital systems become increasingly influential in health care provision, and the number of profit-driven contributors multiply, one might expect those capitalist patterns, ideologies, and habits to have even greater influence. This is arguably already being documented and discussed in the past decade (Elliott 2010; Starr 2011; Brill 2013; Chernomas and Hudson 2013; Rosenthal 2013; Brill 2015; Scheiber 2016; Rosenthal 2017; Waitzkin 2018; Magee 2019).

 To connect a social pathology in health care to structural modes of profit production is not to deny, for instance, their potentially gendered or racial components. It is instead an attempt to begin illustrating their interconnections, amplify motivation for action, and inform transformative strategies.

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Another pathology of health care that Marx-inspired bioethics projects may help analyze is the progressive loss of rural health care facilities and physicians as a result of accumulating and centralizing forces of capital. For decades hospital-based capital has been centralizing in urban centers as hospitals merge, conglomerate, partner with universities, and purchase physician groups in response to economic imperatives for continued surplus production and growth. As of 2013, the number of mergers and acquisitions in the health sector was the highest in a decade (Kirchhoff 2013), and the pace has not slowed since (Abelson 2018). Evidence suggests that mergers among hospitals generally increase prices, which lead to higher overall expenditures without declines in usage (Gaynor and Vogt 2003; Abelson 2018). “This result creates a paradox in the literature: Markets with more providers tend to have higher costs, but mergers among hospitals also seem to increase costs” (Chernew and May 2011, 319). Capital as a whole seems to benefit, however, when profit production is understood as a motivating function. The major losers in these trends have been persons in the rural United States, where many smaller towns even see hospitals—like industrial factories decades earlier—close altogether (Andrews 2016; Siegler 2019). This has led to some policies trying to entice young physicians to move or return to rural communities, often times in return for incentives like student loan forgiveness (Sulzberger 2011; Silverman 2015; Howley 2018). Such reforms seem to recognize a genuine value on the part of many physicians—especially those who were raised in rural areas—to service those communities. Yet the incentives also recognize that the reifying or alienating effects of capital subvert individual and collective normative desires. Because urban centers offer higher earning potential for young physicians, and because medical school graduates are saddled with so much debt, they are subjected more to capital’s influence than to their values for community, human welfare, or a sense of home. An appeal to the freedom and individual values of those physicians can motivate political struggle against such forces, especially if they are identified with larger structural forces through the pathology concept. Thus there is little need to commit theoretical labors to constructing moral arguments to justify a young physician’s virtue or right to become a rural community doctor. There is instead a need to address the structural barriers to her or him acting on that desire, and understanding these structural forces in reference to capitalist profit production is crucial. This brings us to the final pathology of health care that I wish to highlight in spending growth. Among the foremost challenge for health policy makers today is the expanding growth and rate of growth in health care spending.25 Health care spending seems almost impervious to attempts to curb this growth for many reasons, some of which may seem inherent more to medicine than to capitalism.26 And while health care spending as a percentage of GDP is by far the highest in the

 On this distinction between the growth of costs and the rate of growth of costs, and its economic/ policy significance, see Chernew and May (2011; especially 317). 26  See for instance Callahan (1998); Reinhardt (2009); Chernew and May (2011); Kennedy (2015). 25

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United States, growth in health care spending is considered a major concern for all industrialized countries. On this basis, spending growth is already considered a major crisis in health policy circles, and has continually caused political strife— especially in countries with nationalized systems. What, then, can Marx-informed bioethics projects and my pathology concept bring to this conversation that already identifies fundamental challenges in the structures of health care? A totalizing structural viewpoint of Marxian critical methodology offers novel ways of framing the challenge of cost growth for bioethics. Health economists Michael Chernew and Dustin May argue that, “because all expenditures are revenue to some individual or organization, efforts to slow expenditure growth are synonymous with efforts to restrain revenue growth. Thus, such efforts are inherently political” (Chernew and May 2011, 323).27 We can understand this in the totalizing structural terms of Marxian critique as a central observation of my critical bioethics project: the pathological growth of health care spending (especially in the United States) is connected at nearly every point to profit-productive forces of capital. And this fact creates conservative political momentum for protecting the present system because health care spending—inefficient waste from a policy perspective—represents revenue for profit-motivated enterprises. As a result, the “politics of health care” in the United States as understood until now has been predominately led—if not outright dominated—by industries and (perhaps to a lesser extent) physician groups, and less by actual citizen collectives demanding change. It is unlikely that industries will be the drivers of meaningful cost reductions when the most influential parties stand to profit from continued spending under the status quo. I believe that the most effective way to increase patient influence in health care trends would be to actually achieve patient/citizen influence in social processes determining health care delivery. The decommodification and dealienation/dereification of health care goes hand in hand with forms of democratization of health care that place its productive processes under the meaningful and deliberative influence of democratic community governance. You cannot rely on the productive relations of capitalism—which inherently require endless growth—to produce health care while simultaneously decrying its unending ballooning costs. This is why I argue that even the most aggressive capitalist or market-based means have failed to curb growth: Even in the most successful settings (significant managed care penetration and hospital competition) the share of GDP devoted to health care still rises, albeit at a somewhat slower rate than in other markets. (Chernew and May 2011, 320)

This is to say that significant efficiency-minded management (fine-tuned from managerial capitalism) and market competition (the alleged magic elixir of entrepreneurial innovation and cost-cutting) may lower costs somewhat for individuals—yet fail to curb cost growth overall. Health care is thus among the industrialized world’s most potent illustrations of what Marx argues is the fundamental contradiction in capitalism: as capital expands the potency of human labor for greater overall social 27

 Uwe Reinhardt (2009) echoes this idea.

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production, the resulting wealth is increasingly the object of private accumulation in the hands of a few. The problem of growth in spending thus becomes analogous to the problem of sustainability in environmental ethics.28 It is dubious at best to think that an economic mode of production predicated on the need for constant overall growth in productivity and gross production can reliably be the mechanism for achieving sustainability (stable non-growth), much less degrowth. The latter nonetheless seems urgently required in both the environment and in health care spending. Although individual firms may fail, and economies may go through periods of crisis and recession, the long-term need for capitalism is to grow. You therefore cannot rely on the productive relations of capitalism to produce health care goods and services while simultaneously decrying its spiraling overall costs. Some argue that capitalist forces of market competition trend toward greater efficiency in production, which lowers costs for consumers. Yet this overlooks the fact that reductions in per-unit costs from efficiency gains in production tend to increase overall consumption (and growth in profits for the more efficient firm). When Ford produced cars more efficiently than competitors, and thus lowered costs for consumers, it did not mean that overall automotive spending went down. Instead, Ford put the world on four wheels! Turning to capitalism to provide overall cost savings in health care is illogical for the same reasons. Such arguments forget that productive efficiency and lower costs under capitalism—when viewed from the totalizing standpoint of capital as a whole—only function systematically as a means to the end of overall growth in production and consumption and never for the ends of sustainability, sufficiency, or degrowth. With this expansion of capital comes an expansion of its influence over human subjects in alienation. Marx-inspired bioethics projects are fundamentally critical of alienation and reification in health care. Political struggle to remove capitalistic influence and systemic malfunction and replace it with meaningful democratic influence—especially in its production as opposed only to its distribution—is a central driver of dereifying and decommodifying health care politics that I ultimately call for in my work. Such a politics will have to rely on actual struggle on the part of groups of people and communities whose interests in democratized, dereified health care embody the potential for a more humane mode of health care production that meets the authentic needs of all people. These politics will likely need to find allies in broader struggles for economic and political emancipation in order to be successful—yet structural analyses can arguably help to identify such potential for allies. I argue that Marx-inspired nonideal theoretical projects better contribute to the transformational goals of bioethics when compared to the moralizing philosophical articulation of idealizations alone, or the presumption that all of our health care activities are reflections of underlying moral belief and judgment. I argue that a dealienated/dereified mode of health care production—where one could

28

 See Schweickart (2009), Dittrich et al. (2012), and Hickel (2018).

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realistically claim underlying transitive efficacy between social normative beliefs and actual social conditions and practices—is a political achievement that must be won through struggle and not a social order to be presupposed in idealizing bioethics.

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Entwistle, Vikki A., and Ian S. Watt. 2013. Treating patients as persons: A capabilities approach to support delivery of person-centered care. American Journal of Bioethics 13 (8): 29–39. Epstein, Brian. 2018. Social ontology. The Stanford encyclopedia of philosophy, ed. Edward N.  Zalta. https://plato.stanford.edu/archives/sum2018/entries/social-­ontology/. Accessed 15 Oct 2019. Feenberg, Andrew. 2014. The philosophy of praxis: Marx, Lukács and the Frankfurt school. London: Verso. Frye, Marilyn. 1983. The politics of reality: Essays in feminist theory. Trumansburg: Crossing Press. Gaynor, M., and W.B. Vogt. 2003. Competition among hospitals. RAND Journal of Economics 34 (4): 764–785. Greene, Jeremy A. 2007. Prescribing by numbers: Drugs and the definition of disease. Baltimore: Johns Hopkins University Press. Habermas, Jürgen. 1987. The theory of communicative action, vol. 2, Lifeworld and system: A critique of functionalist reason. Trans. Thomas McCarthy. Boston: Beacon Press. Haslanger, Sally. 2012. Resisting reality: Social construction and social critique. New  York: Oxford University Press. ———. 2016. What is a (social) structural explanation? Philosophical Studies 173 (1): 113–130. Heinrich, Michael. 2012. An introduction to the three volumes of Karl Marx’s capital. Trans. Alexander Locascio. New York: Monthly Review Press. ———. 2013. The ‘fragment on machines’: A Marxian misconception in the Grundrisse and its overcoming in Capital. In In Marx’s laboratory: Critical interpretations of the Grundrisse, ed. Riccardo Bellofiore, Guido Starosta, and Peter D. Thomas, 197–212. Leiden: Brill. Hickel, Jason. 2018. Why growth can’t be green, Foreign Policy, September 12, https://foreignpolicy.com/2018/09/12/why-­growth-­cant-­be-­green/. Accessed 11 Apr 2019. Howley, Elaine K. 2018. How some communities are freeing doctors from medical school debt. US News and World Report, May 11, https://health.usnews.com/health-­care/patient-­advice/ articles/2018-­05-­11/how-­some-­communities-­are-­freeing-­doctors-­from-­medical-­school-­debt. Accessed 1 July 2019. Hunt, Linda M., Meta Kreiner, and Howard Brody. 2012. The changing face of chronic illness management in primary care: A qualitative study of underlying influences and unintended outcomes. The Annals of Family Medicine 10 (5): 452–460. Jaggar, Alison. 2000. Ethics naturalized: Feminism’s contribution to moral epistemology. Metaphilosophy 31 (October): 452–468. ———. 2009. L’Imagination au Pouvoir: Comparing John Rawls’s method of ideal theory with Iris Marion Young’s method of critical theory. In Feminist ethics and social and political philosophy: Theorizing the non-ideal, ed. Lisa Tessman, 59–66. Dordrecht: Springer. Jütten, Timo. 2011. The colonization thesis: Habermas on reification. International Journal of Philosophical Studies 19 (5): 701–727. Kelly, Mark G.E. 2018. For Foucault: Against normative political theory. Albany: State University of New York Press. Kennedy, Peter. 2015. The contradictions of capitalist healthcare systems. Critique: Journal of Socialist Theory 43 (2): 211–231. Kincaid, Harold, and Don Ross. 2009. Introduction: The new philosophy of economics. In Oxford handbook of philosophy of economics, ed. Harold Kincaid and Don Ross, 3–32. New York: Oxford University Press. Kirchhoff, Suzanne M. 2013. Physician practices: Background, organization, and market consolidation, CRS Report No. R42880. Washington, DC: Congressional Research Service. https:// www.fas.org/sgp/crs/misc/R42880.pdf. Krier, Daniel, and Mark P.  Worrell, eds. 2016. The social ontology of capitalism. New  York: Palgrave Macmillan. Lindemann, Hilde, Marian Verkerk, and Margaret Urban Walker, eds. 2009. Naturalized bioethics: Toward responsible knowing and practice. New York: Cambridge University Press.

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Lukács, Georg. 1971. History and class consciousness: Studies in Marxist dialectics. Trans. Rodney Livingstone. Cambridge, MA: MIT Press. Mackenzie, Catriona, and Natalie Stoljar, eds. 2000. Relational autonomy: Feminist perspectives on autonomy, agency, and the social self. New York: Oxford University Press. Magee, Mike. 2019. Code blue: Inside America’s medical industrial complex. New York: Atlantic Monthly Press. Marx, Karl. 1990. Capital: A critique of political economy, vol. 1. Trans. Ben Fowkes. New York: Penguin. ———. 1991. Capital: A critique of political economy, vol. 3. Trans. David Fernbach. New York: Penguin. ———. 1992. Capital: A critique of political economy, vol. 2. Trans. David Fernbach. New York: Penguin. ———. 1993. Grundrisse: Foundations of the critique of political economy (Rough Draft). Trans. Martin Nicolaus. London: Penguin. Mead, Nicola, and Peter Bower. 2000. Patient-centredness: A conceptual framework and review of the empirical literature. Social Science & Medicine 51 (7): 1087–1110. Meyers, Diana T. 1989. Self, society and personal choice. New York: Columbia University Press. Mills, Charles W. 2005. ‘Ideal theory’ as ideology. Hypatia 20 (3): 165–184. ———. 2007. Contract of breach: Repairing the racial contract. In Contract and domination, ed. Carole Pateman and Charles Mills, 106–133. Malden: Polity Press. Naci, Huseyin, and John P.A.  Ioannidis. 2013. Comparative effectiveness of exercise and drug interventions on mortality outcomes: Metaepidemiological study. BMJ 347: f5577. Navarro, Vicente. 1976. Medicine under capitalism. New York: Prodist. ———. 1985. U.S.  Marxist scholarship in the analysis of health and medicine. International Journal of Health Services 15 (4): 525–545. ———. 1989. Why some countries have national health insurance, others have national health services, and the U.S. has neither. Social Science and Medicine 28 (9): 887–898. ———. 1993. Dangerous to your health: Capitalism in health care. New  York: Monthly Review Press. Oldani, Michael J. 2010. Assessing the “relative value” of diabetic patients treated through an incentivized, corporate compliance model. Anthropology & Medicine 17 (2): 215–228. Oliver, Kelly. 1989. Marxism and surrogacy. Hypatia 4 (3): 95–115. Phillips, Anne. 2013. Our bodies, whose property? Princeton: Princeton University Press. Radin, Margaret Jane. 1993. The rhetoric of alienation. In Reinterpreting property, 191–202. Chicago: University of Chicago Press. ———. 1996. Contested commodities. Cambridge, MA: Harvard University Press. Rawls, John. 1971. A theory of justice. Cambridge, MA: Harvard University Press. ———. 1999. The law of peoples. Cambridge, MA: Harvard University Press. Reidy, Angela. 1984. Marxist functionalism in medicine: A critique of the work of Vicente Navarro on health and medicine. Social Science and Medicine 19 (9): 897–910. Reinhardt, Uwe, interviewed by Sarah Koenig. 2009. 391: More is less. This American Life, podcast audio, October 9, http://www.thisamericanlife.org/radio-­archives/episode/391. Rosenthal, Elisabeth. 2013. As hospital prices soar, a single stich tops $500. New York Times, December 3. ———. 2017. An American sickness: How healthcare became big business and how you can take it back. New York: Penguin Press. Scheiber, Noam. 2016. Doctors unionize to resist the medical machine. New York Times. January 9. Schweickart, David. 1993. Against capitalism. Cambridge: Cambridge University Press. ———. 2009. Is sustainable capitalism an oxymoron? Perspectives on Global Development and Technology 8: 559–580. ———. 2017. After capitalism. Lanham: Rowman & Littlefield. Shotwell, Alexis. 2016. Against purity: Living ethically in compromised times. Minneapolis: University of Minnesota Press.

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Siegler, Kirk. 2019. The struggle to hire and keep doctors in rural areas means patients go without care, All Things Considered, May 21, https://www.npr.org/sections/health-­ shots/2019/05/21/725118232/the-­struggle-­to-­hire-­and-­keep-­doctors-­in-­rural-­areas-­means-­ patients-­go-­without-­c. Accessed 1 July 2019. Silverman, Lauren. 2015. Texas strives to lure mental health providers to rural counties. All Things Considered. September 1, https://www.npr.org/sections/health-­shots/2015/09/01/436386850/ texas-­strives-­to-­lure-­mental-­health-­providers-­to-­rural-­counties. Accessed 1 July 2019. Simmons, A. John. 2010. Ideal and nonideal theory. Philosophy and Public Affairs 38 (1): 5–36. Starr, Paul. 2011. Remedy and reaction: The peculiar American struggle over health care reform. New Haven: Yale University Press. Sulzberger, A.G. 2011. New path for small-town doctors starts in a Kansas small town. New York Times, July 23. Thompson, Michael J. 2016. Social ontology and social critique: Toward a new paradigm for critical theory. In The social ontology of capitalism, ed. Daniel Krier and Mark Worrell, 15–45. New York: Palgrave Macmillan. Todres, Les, Kathleen Galvin, and Karin Dahlberg. 2007. Lifeworld-led healthcare: Revisiting a humanising philosophy that integrates emerging trends. Medicine, Health Care and Philosophy 10: 53–63. Tronto, Joan C. 1993. Moral boundaries: A political argument for an ethic of care. New York: Routledge. Valentini, Laura. 2009. On the apparent paradox of ideal theory. The Journal of Political Philosophy 17 (3): 332–355. Waitzkin, Howard. 1979. A Marxian interpretation of the growth and development of coronary care technology. American Journal of Public Health 69 (12): 1260–1268. ———. 1981. A Marxist analysis of the health care systems of advanced capitalist societies. In The relevance of social science for medicine, ed. Leon Eisenberg and Arthur Kleinman, 333–369. Boston: D. Reidel Publishing. ———. 1983. The second sickness: Contradictions of capitalist health care. New York: Free Press. ———. 1984. The micropolitics of medicine: A contextual analysis. International Journal of the Health Services 14 (3): 339–378. ———. 1989. A critical theory of medical discourse: Ideology, social control, and the processing of social context in medical encounters. Journal of Health and Social Behavior 30 (2): 220–239. ———. 2011. Medicine and public health at the end of empire. Boulder: Paradigm. ———, ed. 2018. Health care under the knife: Moving beyond capitalism for our health. New York: Monthly Review Press. Walker, Margaret Urban. 2002. Moral contexts. Lanham: Rowman & Littlefield. ———. 2007. Moral understandings: A feminist study in ethics. New York: Oxford University Press. Young, Iris Marion. 2011. Responsibility for justice. New York: Oxford University Press.

Chapter 5

Conditioning Principles: On Bioethics and the Problem of Ableism Joel Michael Reynolds

What it is to be human is not a bundle of capacities. It’s a way that you are, a way you are in the world, a way you are with another. Eva Kittay (2009, 622).

There is a large literature examining the relationship between principles and biomedicine, much of which operates on the assumption that principles are theoretically and practically fruitful. That is to say, principles are considered a useful tool for normative theorizing, and due to that use, they assist guiding practitioners in the equitable delivery of healthcare. This paper contributes to that literature by exploring an underappreciated way in which principles can instead  actively undermine normative theorizing in general and the delivery of equitable healthcare in particular. As a case study to understand this problem, I show how ableism is one such principle, demonstrate its negative impact on achieving aims of justice as fairness in medicine, and suggest some ways forward. I proceed by assuming two types of audiences: one that will be more interested in the take-aways of this analysis for concrete bioethical inquiry (i.e., take-aways that have purchase for clinical bioethicists, hospital review boards, and related domains) and another that will be more interested in the philosophical steps that underwrite the argument (namely, philosophy or other humanities professors who do research in bioethics and who may or may not be especially concerned about application). Section 5.2 is solely for the latter audience, so bioethicists whose interests are driven by the constraints of real-world healthcare delivery can safely skip it. The rest of the sections, I hope, will be of interest to both camps.

J. M. Reynolds (*) Department of Philosophy and Kennedy Institute of Ethics, Georgetown University, Washington, DC, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 E. Victor, L. K. Guidry-Grimes (eds.), Applying Nonideal Theory to Bioethics, Philosophy and Medicine 139, https://doi.org/10.1007/978-3-030-72503-7_5

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In Sect. 5.1, I briefly rehearse bioethics’ much-discussed relationship with principlism, which is to say, its longstanding methodological reliance upon the application of general principles to particular, individual cases as part of its defining institutional service to the practice of biomedicine. In Sect. 5.2, I explain what I mean by a “principle”. I then show how ableism functions both in bioethical theory and biomedical practice as a conditioning principle: a principle that implicitly or explicitly grounds, limits, or otherwise determines the construction and role of other principles. In Sect. 5.3, I show ableism at work in this way through an analysis of the famous debate between Eva Kittay, Peter Singer, and Jeff McMahan. In short, ableism structures how we think about the meaning of being human and the relationship between humans and wellbeing, and it operates implicitly—silently or stealthily—in ways that condition or place parameters upon the possibility of other principles or guidelines for thought and action. In Sects. 5.4 and 5.5, I argue that one of the primary ways conditioning principles such as ableism maintain and further unjust practices, and thereby actively undercut the ideals and praxis of justice, is through epistemologies of ignorance, which are fomented by ideal theory approaches. It is for this reason, I contend, that conditioning principles should be a focus of those committed to nonideal theory. A proviso is in order. First, although I speak at length of principles and their import, I neither delve into the large literature on the role of principlism in bioethics—whether in general (see, e.g., Clouser and Gert 1990) or with respect to particular principles (Francis 2017)—nor do I delve into related questions of methodology for bioethical inquiry (Jonsen et  al. 1988). I do not substantively engage this literature because I will not argue for or against the role of principles for bioethical inquiry or biomedical practice. I instead argue that conditioning principles play a significant role in bioethical inquiry and in biomedical practice that has been largely underexamined, that this role can undermine the normative aims of bioethical and biomedical thinking and practice, and that this role should thus be subjected to critical scrutiny.

5.1  Medicine, Bioethics, and Justice Whichever side one takes concerning debates in the philosophy of medicine over the internal morality of medicine, most agree that medicine is practiced best when oriented by the end of helping patients (Symons 2019; Ben-Moshe 2017)). Thus, whether or not the intrinsic goal of medicine is in fact to help patients, it should be. In turn, the goal of bioethics, at least with regard to its origins, is to help guide practitioners through the articulation of, reflection upon, and implementation of ethically grounded practices that will bring about its guiding goal (cf. Arras 2001).1 1  Put less diplomatically, bioethics arose to counterbalance the many egregiously unethical and unjust practices and actions carried out under the banner of “medicine” and “scientific progress” across the globe (Washington 2008).

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Famously, though to some notoriously, one way in which the field of bioethics initially carried out this goal was via the positing or, depending upon how one sees it, articulation of principles. Canonized by Beauchamp and Childress, bioethics’ four primary principles—respect for autonomy, beneficence, nonmaleficence, and justice—were conceived as “general norms that leave considerable room for judgment in many cases” (Beauchamp and Childress 2001, 13). Beauchamp and Childress assume that from principles flow rules that will guide judgments leading toward morally defensible action. It bears repeating, however, that these principles, dubbed the “Georgetown mantra,” were not intended to function as “precise action guides that inform us in each circumstance how to act in the way that more detailed rules and judgments do.”2 Furthermore, and with the notable exception of the principle of justice, the Georgetown mantra was conceived with the care of individual clinical and research patients in mind. These core three principles, then, were not understood as or intended to be principles of public health, for example. This is understandable and, in many ways, expected, since historically the object of medical care has been the individual patient. Put roughly, then, the role of bioethics from its origins in the 1960s and 1970s, to its many transformations and expansions in the late 80s and 90s, and on to the increasingly institutionalized and manifold forms it takes today has, by and large, been shaped by a historical focus on norms pertaining to individualized care (Evans 2012; Wilson 2013). The rise of fields such as public health and social epidemiology in some ways reinforced bioethics’ focus to the point that many simply take this for granted as bioethics’ characteristic function amidst the larger panoply of medical practices, institutions, fields, and services, whether primarily academic or otherwise in nature. This leads us back to the unique role of principles in relation to bioethics and biomedical practice. When principlism came under growing criticism in the late 80s and early 90s, this focus on the individual maintained its grip across bioethics as a whole and did so for expected sociological reasons (see Evans 2000).3 Take the concepts of ‘autonomy,’ ‘dignity,’ ‘respect,’ and ‘choice’: each of these, albeit in their own way, undergirded and animated all four of bioethics’ canonical principles. This is all to say, one of the legacies of principlism in bioethics is the assumption that whatever form bioethics takes and whatever methods it employs—whether principlism, casuistry, contextualism, naturalism, empirical bioethics, feminist

2  Of course, Beauchamp and Childress were drawing and expanding upon the three principles of respect for persons, beneficence, and justice as first laid out in the Belmont report. 3  To be clear, I am sketching a picture that focuses on dominant themes in the literature. The full story is, of course, far more complex and involves the multiple, sometimes conflicting timelines and histories of “bioethics” as the field increasingly expands—and, there is an argument to be made, significantly fractures—from the early 90s onward.

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approaches, etc.—bioethics best serves medicine by focusing its reflective and practical efforts on the care of individuals.4 Yet, as multiple commentators have argued, this historical and exclusive focus on the care of the individual is in tension with feminist critiques concerning the principle of justice, both with respect to its meaning and application. For example, scholars like Eva Feder Kitty and Martha Fineman argue that insofar as we are all inevitably dependent, we are all inextricably interdependent (Kittay 1999; Fineman 2004). To understand the ends of medicine as focused on the individual is to misconstrue the nature of caring systems. Caring systems, in order to actually deliver care, must be focused on the relations and complex structures in and through which any given individual is afforded the conditions of a well-cared-for life. A sole focus on the individual simply misunderstands what it means to care.5 Supporting this concern over an idealized, individualistic focus, there is a large and growing body of evidence demonstrating that interventions focused at the level of an individual’s body will in many respects be a poor substitute for interventions focused at larger interactions with an individual’s environment (Morar and Skorburg 2018; Ariga and Heiman 2018). Economic stability, reliable access to healthy foods, high-quality and continuing education, a clean environment, safe and supportive forms of labor, caring and durable systems of interpersonal support: these are the primary determinates of health. It is hard to overstate the import of the fact that one’s zip code is a better predictor of health than one’s genomic code. Seen in the light of such evidence, the oaths of Hippocrates and Maimonides, focused as they are on the individual patient, seem today quaint in both scope and aim, if not sorely misguided. But what if the problem of this historical focus on the individual patient goes deeper? What if the principles built upon and out of this focus reveal an even deeper theoretical committment, namely, the commitment to the principle that abilities are properties, characteristics, or features of individuals?

4  As Alica Oulette writes, “despite its many faces, bioethics has as its core a central concern with respect for persons through respect for individual autonomy and good medical care.” (Ouellette 2011, 30). My thanks to Joe Stramondo’s article, “Disabling bioethics: The case for a disability moral psychology and epistemology” for bringing my attention to this quote (Stramondo 2014; cf. Stramondo 2016). 5  To be clear, this critique is less apropos for the field of public health, which often takes the principle of justice and the necessity and nature of caring systems more seriously. Though whether and how it does so in theory as opposed to in practice is a more complicated question. Leslie P. Francis notes that “justice has tended to come last” in the “teaching and practice not only of bioethics but of other fields in applied ethics.” Among other reasons, this is because “justice isn’t a single principle, but a topic area in social, political, and moral philosophy. There is deep disagreement about which principle(s) of justice to adopt, and why” (Francis 2017, 1). The critique of the historical focus of bioethical inquiry on the individual turns on both the scope and application of normative arguments in this domain. Put bluntly, a large swath of bioethical inquiry especially that which occurs inside or in close relation to the field of philosophy, eschews questions of justice in order to focus on narrower concerns. Paradigmatic questions include, for example, “what is an MD in specialist field X to do in situation Y under constraints W and Z given normative theories A, B, or C?”

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5.2  Principles, Epistemic Schemas, and Normative Force Before I can defend such a claim, I must define my terms. For the purposes at hand, I define a principle as (i) a proposition or set of propositions taken to be true for all phenomena to which it refers or otherwise generalizes over, (ii) which acts as the basis or foundation for further reasoning, judgment, belief, or related cognitive processes, and (iii) which can function prereflectively or reflectively. Principles are generalizations involving sufficient content to guide action across a wide set of circumstances. They act as a foundation for further cognition in the sense that they can help produce a wide range of action-guiding inferences. Principles, as should be obvious, are not concepts: they do not group or gather particular things under an overarching category or notion. By definition, principles don’t have particulars under them. Principles have many varied functions and effects, and they thus come in many varieties. Although on this definition, principles are construed as matters of thinking or cognition, they have material consequences and can profoundly shape and direct habits, comportment, and praxis at the individual level as well as larger social patterns, practices, and institutions. Principles have this wide-ranging effect through two primary mechanisms: the creation of (a) epistemic schemas in particular and (b) normative force in general. By an ‘epistemic schema,’ I mean an hermeneutic filter that structures how one perceives and judges, which is to say, a cognitive filter that contributes to and in some cases directly confers meaning (Peña-Guzmán and Reynolds 2019).6 Epistemic schemas inform what and how one sees, what and how one thinks, and what one does and how one acts. By providing a foundation for reasoning, judgment, and belief about a range of phenomenon, principles create epistemic schemas; they create ready-to-use interpretive filters that allow one to quickly categorize, organize, and make intelligible a wide range of phenomenon. For example, Mill’s greatest happiness principle—“actions are right in proportion as they tend to promote happiness, wrong as they tend to produce the reverse of happiness”—creates an epistemic schema or filter that can be used to interpret an extremely wide range of experiences in terms of cause-and-effect, namely, cause and effect with respect to the promotion or reduction of happiness. Put simply, principles act as guides for experience.7 Principles are regulative cognitive tools. They conduct thinking and action with regard to as large a range of phenomena upon which they are taken to have purchase. It is in this sense that 6  In Peña-Guzmán and Reynolds (2019), we argue that ableism is an epistemic schema. I here argue that ableism is a principle that generates epistemic schemas. We did not discuss the role of the principles in that piece due to the audience and other concerns at hand. I ultimately take these arguments to be compatible insofar as ableism functions as an epistemic schema precisely through its role as a principle. 7  I am not making the argument that epistemic schemas necessarily arise due to a previous (logically or experientially) role as a principle. The larger relationship, causal or otherwise, between principles and epistemic schemas is beside the point here.

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p­ rinciples can structure the meaningfulness of lived experience, sometimes with respect to a particular domain and other times with respect to one’s lived experience as a whole.8 To return to Mill, the greatest happiness principle structures the classic Trolley problem thought experiment introduced by Phillipa Foot thought in such a way that its meaning is not a question of tragedy, caprice, theodicy, technological hubris, finitude, design, or any number of other things, but instead of the promotion of happiness. If one further takes the greatest happiness principle as the principle by which to live, then the meaningfulness of one’s life as a whole can become fundamentally structured by it. In addition, principles generate normative force. That is to say, they generate motivating reasons to care about phenomena in particular ways. They are in that manner binding in Brandom’s sense of the term and regulative in Kant’s sense of the term. That is to say, they guide and orient both thought and action toward certain ends and away from others (i.e., they are regulative), and these ends are assessed relative to the recognitive community or communities to which one is committed (i.e., they are binding) (Kant 1998; Brandom 2019). The normative force of principles contributes to the generation of that by which people come to care about the way the world is and ought to be such that they seek to maintain or change it. Crucially, for a proposition or set of propositions to function as a principle does not require one to have reflected upon, expressed, or otherwise articulated those propositions or anything pertaining to their experiential role. Put simply, principles can operate implicitly or explicitly, and it is because of this that their articulation in propositional form is not necessary for their function to be carried out. That form merely makes explicit in a particularly helpful manner the ways in which a principle impacts one’s or a community’s thinking. Among the ways that principles can function implicitly, there are a subset that are “stealthy,” to borrow an apt term from  Quassim Cassam that he uses to talk about virtue (Cassam 2018, 149). To understand some principles as stealthy merely touches the surface, however, for it is not just an issue of covertness, but also one of epistemic primacy and epistemic maintenance. As a wide swath of literature in social epistemology has argued, credences (degrees of belief in Φ given one’s evidence) are shaped in part by one’s interest in holding one’s larger belief system in place (cf. Nguyen 2018). Whether or not I believe Φ or not Φ will in part depend on the extent to which the truth of Φ or not Φ call into question my larger system of beliefs about the world. People give epistemic primacy to credences central to their larger epistemic framework, and they work to maintain those credences as well as supporting ones, accordingly downgrading credences that present a threat. If a given credence calls one’s principles and larger epistemic schemas into question, then one will likely be predisposed to discredit the evidence for that credence. 8  By construing principles in this manner and by further arguing that ableism is a principle, I am neither defending a generalist, nor a particularist position, nor a position somewhere in between. That is to say, I am neither making an argument concerning the defensibility of moral principles (or other sorts of principles) in general, nor making an argument about their proper role for moral thought or an ethical life. Cf. (Potrc et al. 2010).

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The greatest happiness principle enthusiast will likely place less belief in studies suggesting that happiness is profoundly subjective and variable since, whatever their merits, taking such studies seriously might fundamentally undermine that principle and its role in one’s larger epistemic framework as a whole. This means that insofar as principles lead to multiple credences as well as centrally support larger epistemic frameworks central to one’s larger worldview, any particular credence that  in some way threatens a principle integral to that epistemic framework will have an especially uphill battle. As mentioned above, because principles can regulate in explicit or implicit ways, including ways that are conditioning, they can function without ever taking propositional or other sorts of discursive form. A more complete definition can now be offered: principles are regulative cognitive tools that determine the meaning and value of various domains of lived experience and which operate at varying levels of explicitness. Now that I have defined a ‘principle,’ I can turn to the central topic of this paper: conditioning principles. A conditioning principle is a principle that implicitly or explicitly grounds, limits, or otherwise determines the possibility of other principles. That is to say, conditioning principles are determinative of which other principles a person holds as well as the role those principles play relative to one’s larger epistemic framework. Furthermore, conditioning principles are especially liable to be stealthy in the sense described above. This makes them especially problematic both as objects of inquiry and as obstacles for epistemic  transformation because conditioning principles are often actively hidden from one’s reflective awareness, leading them to function as bulwarks of epistemic ignorance (as I discuss at length in Sect. 5.5 below). In the following section, I argue that ableism is a conditioning principle, and I focus on its ramifications in the field of bioethics, the practice of biomedicine, and philosophy more generally.

5.3  The (Problem of the) Principle of Ableism Ableism can be defined in many ways, and there are ongoing debates in the humanities and social sciences over the best way to characterize the concept either in general or with respect to specific domains of inquiry (e.g., see Nario-Redmond 2019; Scuro 2017; Goodley 2014). My primary aim in this section is not to define ableism or demonstrate why it is problematic, but instead to show that ableism functions as a conditioning principle and, insofar as it plays this specific role, that it influences bioethical inquiry and argumentation in unreflective and critically undermining ways. It follows from my argument that any such conditioning principle deserves further interrogation. Recall that in Sect. 5.2, I defined a principle as “(i) a proposition or set of propositions taken to be true for all phenomena to which it refers or otherwise generalizes over and (ii) which acts as the basis or foundation for further reasoning, judgment, belief, or related cognitive processes.” I then defined a conditioning principle as a principle that implicitly or explicitly grounds, limits, or otherwise determines the

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construction and role of other principles, including which principles will appear intelligible and apt in the first place. Understood as a conditioning principle, ableism involves the conjunction of the following four claims: 1. Abilities or capacities are qualities, properties, characteristics, features, or dispositions of individuals. 2. Abilities create, comprise, and/or confer value upon the life of an individual. 3. Given (1) and (2), abilities are central to an individual’s wellbeing, fundamental to the meaningfulness of their life, and determinative of their actual and also potential social standing, social roles, and social capital. 4. Disabilities, understood as a lack or deficiency of abilities as understood in (1), negatively impact one’s value, per (2), and wellbeing, per (3).9 Recall that principles are regulative: they guide thinking in a way that allows a wide range of applications and that typically ends up being determinate for the meaning of the phenomena at hand. How then, do these propositions work together as a principle that grounds, limits, or otherwise determines and selects for other principles? The principle of ableism leads people to determine the value of a given individual in terms of the abilities of their individual body and mind as well as in terms of the perceived achievements brought about or potentially brought about by each. Note that the principle of ableism does not deliver verdicts about which sorts of qualities, properties, characteristics, or dispositions of individuals should be considered abilities (as opposed to say, accidents or trivialities).10 That is to say, the conditioning principle of ableism does not provide a priori tools to know whether touching one’s nose with one’s tongue will count as an ability, disability, or as neither. Nor does the principle of ableism deliver verdicts about which sorts of abilities should or will confer value upon any given individual life. It instead guides people to think of abilities and disabilities in general in the ways detailed above, and it allows the content to be filled in. It is for such reasons that ableism fundamentally involves idealization in the sense that instead of looking to actual phenomenon detailing the meaning of ability—whether with respect to questions of biology, sociology, history, anthropology, or philosophy, among other sources—the central abstraction it involves (viz., (1) above) is instead stipulated and, what’s more, treated as common sense. Furthermore, the primary evaluative aspect of the conditioning principle—built into the

9  This is obviously a case of what Elizabeth Barnes’ terms a “bad-difference” view of disability (2016). Note that while I am arguing that ableism understood as a conditioning principle involves a bad-difference view of disability, it does not specify which abilities would be considered central to flourishing and which would not. 10  It is important to note that the concept of ableism borrows part of its force from other pernicious-­ isms (racism, sexism, cis-sexism, ageism, classism, etc.), but similarly to those terms, ableism is not merely or even primarily a question of individual beliefs or judgments It is instead a complex phenomenon with psychological, material, historical, and many other facets. I take my discussion of ableism as a conditioning principles to build upon such analyses.

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distinction between ability and disability, between (1) and (4)—is treated as obvious. If one were to operate with a nonideal understanding of the meaning of ability and disability, this evaluative aspect would appear absurd in this abstract form: one need only point to the countless cases of an ‘ability,’ as defined in (1), that in one culture and/or historical time period is considered to confer value upon a person and in another is considered to detract from or entirely negate their value. Because it generalizes over the meaning and value of being human, it is hard to overstate the impact this conditioning principle has on questions of well-being and on larger, related socio-political questions. As a conditioning principle, ableism renders other principles—like beneficence, non-maleficence, and respect for autonomy—to be interpreted in ways that are predicated upon the existence and value of abilities so understood. This leads one to downplay or ignore the fact that abilities and the values to which they are tied are fundamentally and necessarily relational and social (Reynolds 2018; Kafer 2016; Garland-Thomson 2020). From breathing to communicating to procreating to provisioning any of our basic or non-basic needs, there is nothing a human organism can do without a supporting environment; from sports to finance to feeling at home and from confidence to consumption to dance, there is no meaningful activity in which a human organism engages that does not require a supporting environment. The conditioning role of the principle of ableism obscures this fundamental insight. It misconstrues the nature of ability; it downplays or ignores the role of the social in determining the meaning of ability; and it supports an individualistic framing of wellbeing and social standing. It thereby leads people to inflate the import of the individual, to misconstrue what Eva Kittay terms the “nested dependencies” without which we could not live, much less flourish, and to downgrade the actual role of systems of support, both social and environmental in kind. In short, the principle of ableism undermines the aims of justice as fairness by actively misrepresenting and misunderstanding the social, relational nature of human beings, human life, and human wellbeing as indexed by abilities and ability expectations. This issue is not simply one of failing to appreciate the nature and complexity of abilities. It is also intimately related to a larger issue of understanding experiences unlike one’s own. In her book Transformative experience, L.A.  Paul argues that there are all sorts of experiences about which we are simply not in an epistemic position to comprehend: “stories, testimony, and theories aren’t enough to teach you what it is like to have truly new types of experiences—you learn what it is like by actually having an experience of that type” (2014, 13).11 Examples of transformative experiences include being a parent, being an astronaut, undergoing a radical ability transition (becoming suddenly paralyzed from the neck down), religious transformation, etc. What’s more, not only can one not know about certain types of novel, transformative experiences, a “radically new experience” can be “epistemically and personally transformative”—it can fundamentally change how one knows and who

11

 I am aware of the critiques of Laurie Paul from Agnes Callard, but I ultimately side with Paul.

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one is and will become (170). This argument does not simply apply to sets of ­experiences, however. It also applies to the meaning of any given individual ability relative to the larger context in which it is experienced as meaningful. The relationship of a given discrete ability or set of abilities to wellbeing is not automatically or sufficiently determined by discretely comparing one’s own abilities to the addition of another ability in question or to the lack of one currently has. This is so for the following two reasons. First, abilities are often transformative in the manner discussed above. Second, abilities are not properties, qualities, or features of one’s individual body or mind, but instead of the interaction of one’s body and mind with one’s environment, social context, and networks, etc. (Reynolds 2018). As Eva Kittay puts it, “we have learned from disability community that disabilities are not in the body or mind of the disabled person. Although we commonly attribute a disability to a person, the disability is a consequence of an interaction between that particular person and the (social, physical, cultural, etc.) environment in which she finds herself. But if a feature of a person is disabling in a given environment, features of people are enabled in other environments. Thus, an ability, no less than a disability, is the result of the interaction of one’s body and mind” (Kittay, personal correspondence; cf. Reynolds Forthcoming). That is to say, the meaningfulness of a given ability can only be understood in thoroughly contextual terms. The conditioning principle of ableism obscures this fundamental feature of human existence. This is made clear by, among other sources, looking at evidence concerning perceptions of the quality of disabled life. There is a significant body of research showing that able-bodied people regularly underestimate the quality of life of people with disabilities (Basnett 2001; Bagenstos and Schlanger 2007; cf. Barnes 2016). This research suggests that, contrary to abled assumptions, people with disabilities in fact report similar levels of happiness with their lives as people without disabilities. But if ableism is functioning as a conditioning principle, this will seem absurd. To make that point painfully explicit, just consider how Albrecht and Devlieger frame such evidence (1999). They call it the disability paradox. It is only a paradox because they assume that the intuitions of able-bodied people must, surely, be right by holding that being disabled is bad for a person; the fact that many disabled people report being happy, surely, on this account, must be wrong in at least some way. With the conditioning principle of ableism underwriting one’s thinking, to be disabled just is to be lacking or otherwise deviant with respect to one’s abilities and thus invariably experience diminishment in one’s value and well-being—that is what makes it a paradox that people with disabilities in fact report similar levels of happiness with their lives as people without disabilities. Without the conditioning principle of ableism, the paradox disappears and asserting it to even be a paradox would instead appear as an obvious and especially brazen case of hermeneutical injustice. I return to this point below. To see ableism functioning as a conditioning principle in more detail, consider the following exchange between Eva Kittay, Peter Singer, and Jeff McMahan at a conference at Stony Brook University in 2008. This conversation presents—in a highly condensed, yet revealing manner—the heart of the debate between these

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three philosophers carried out across multiple years in academic journals and books (McMahan 2005; Kittay 2006; Singer 2009). Peter Singer (directed at Eva Kittay): . . . You’ve said a couple of times and you said it just again in response to the last question that you think that Jeff [McMahan] doesn’t have the empirical stuff right…[with respect to] my comparison between humans and nonhuman animals…Well, can you tell us some of these morally significant psychological capacities in which you think that human beings, and let’s talk about real ones, so the ones who are “profoundly mentally retarded,” to use that term, in which they are superior to … pigs or dogs or animals of that sort. (Eva Kittay responds by shaking her head.) It’s a factual question. You can’t just shake your head. You have to put up or stop saying that. Eva Kittay: Peter … you asked me how is Sesha [Eva Kittay’s daughter] different from a—what did you say— a pig? And [when I shook my head] you said, well, it’s a factual question, “put up or shut up.” The first thing I have to do when you ask me that question, is I have to get over … a feeling of nausea. It’s not that I’m not able to answer it intellectually, it’s that I can’t even get to the point emotionally, where I can answer that question. (Pause.) Most of the time. When I say you can’t just wave your hand and say “and so on,” it’s because there is so much to being human. There’s the touch, there’s the feel, there’s the hug, there’s the smile… there are so many ways of interacting. I don’t think you need philosophy for this. You need a very good writer … [T]his is why I just reject … [the] … idea that you [should] base moral standing on a list of cognitive capacities, or psychological capacities, or any kind of capacities. Because what it is to be human is not a bundle of capacities. It’s a way that you are, a way you are in the world, a way you are with another. And I could adore my pig; I could dote on my pig. It would be something entirely different. And if you can’t get that; if you can’t understand that, then I’m not sure exactly what it is that you want to hear from me that I could tell you. … I’ll keep trying because I think this is a very important point (Kittay 2009, 621–22).

For philosophers or other academics who have been trained to ignore emotional, “gut” responses to various views, Eva Kittay’s initial response comes off flatfooted.12 Yet, immediately after referencing her visceral reaction, Kittay clarifies exactly why she responds in such a manner: the very framework of Singer’s question has, on Kittay’s view, indefensibly narrowed the meaning of being human. Insofar as Kittay is right that Singer has done so through his focus on capacities, he is engaging in a textbook form of dehumanization. As David Livingstone Smith argues, “When we dehumanize others, we assign them a peculiar status. We typically think of them as beings that appear human and behave in human-like ways, but that are really subhuman on the inside” (Smith 2016; cf. Smith 2011). Note that the idea that moral significance should be drawn along lines of species differences is but one particular form of the idea that moral significance should be drawn along lines of ability differences—about differences on the inside. Historically, if one heeds not simply evolutionary biology, but also sociology and cultural anthropology, what most distinguishes the meaning between species is not physiological form or function, but ability—ability as understood in its complex relationship to an organism’s environment and social context (Fracchia and

 I have learned much from discussions with Lauren Guilmette on the exchange as well as her incisive and insightful analysis of this debate (Guilmette 2016).

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Lewontin 1999; Rieseberg et  al. 2004).13 Individual  “possession” of an “ability” does not determine worth except insofar as a given socio-cultural context confers worth on such an “ability” and, furthermore, conceives it as something an individual could “possess” in the first place. By denying the moral significance of species differentiation and arguing instead for moral significance to be decided in terms of ability or capacity, as Singer and McMahan argue, is to merely move the goal post within a long-established socio-political-philosophical lineage. Herein lies the rub: if one is under the sway of ableism as a conditioning principle, it makes perfect sense to deny the species line as morally unfounded. With the conditioning principle of ableism in operation, the relevant factors turn on one’s individual abilities, since, to repeat the claim of (3), abilities are central to an individual’s wellbeing, fundamental to the meaningfulness of their life, and determinative of their actual and also potential social standing, social roles, and social capital. And, given (1), they are questions of the individual—not their interaction with an environment. And this is precisely why Singer and McMahan appear unable to comprehend Kittay’s point. They do not hear her because ableism is functioning as a conditioning principle that determines how they understand the central terms of and moves within the debate. To repeat the specific claims involved in the conditioning principle of ableism, recall that it involves the idea that abilities, insofar as they determine value, are definitive for the notion of moral status itself. That is to say, the conditioning principle of ableism, by definition, conditions the very meaning and import of other principles, such as those concerning moral status. Kittay’s claim that “what it is to be human is not a bundle of capacities” only makes sense if ableism is not operative as a principle or as a conditioning principle in this way. Understanding ableism as a conditioning principle helps explain why Singer and McMahan appear unable to grasp the reason why assuming claim (1) is philosophically—and, a fortiori, morally—problematic or, at minimum, up for philosophical debate. They simply take claim (1), as well as the other three claims, for granted, and insofar as they do, each claim works in the background of their thought, not needing proper defense or demanding meaningful scrutiny. At least with respect to  It is important, I think, to realize that the idea that moral worth arises from capacities assumes that the complexity of certain organisms affords certain capacities that will make life go better. On its face, that idea flies in the face of contemporary evolutionary theory. “If the differential numerical representation of different types in a species occurs not by chance events of life and death, but because the properties of some organisms confer on them greater ability to survive and reproduce in the environment in which they find themselves, might there not be some properties that would confer a general advantage over most or all environments? Such properties, then, ought to increase across the broad sweep of organisms and over the long duration of evolutionary history, putting aside any particularities of history. So, for example, it has been claimed that complexity has increased during organic evolution, since complex organisms are supposed somehow to be able to survive better the vagaries of an uncertain world. Unfortunately no agreement can be reached on how to measure complexity independent of the explanatory work it is supposed to do. It is, in fact, characteristic of directionality theories that organisms are first arrayed along an axis from lower to higher and then a search is instituted for some property that can be argued to show a similar ordering” (Fracchia and Lewontin 1999, 62).

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this exchange and once one takes seriously the role played by conditioning principles, it is clear that neither Peter Singer nor Jeff McMahan understand the gravity of the fact that the principle of ableism conditions the foundation of their thought. Because of its conditioning role, it is further clear that they simply do not understand what Eva Kittay is in fact arguing. For example, look at McMahan’s reply, which entirely misses Kittay’s point about the basic relationality of human beings and the way that human existence is a question of mode and not form: Jeff McMahan: Let me say something on behalf of Peter’s [Singer’s] point of view here. … Peter has not said anything to deny the significance of a mother’s relation to her own child. Nothing, as far as I can tell. The question here is a question about what moral demands there are on other people. And the fact that you, Eva, have a relation with your daughter doesn’t necessarily give other people the same set of reasons that you have to respond to your daughter in certain ways and to treat your daughter in certain ways. The question is what it is about people like your daughter that makes moral demands on other people that nonhuman animals cannot make on any of us. That is the question that Peter is asking… Eva Kittay: I know you’re not trying to hurt anyone’s feelings… [the issue is] what your writings might mean for public policy. That’s what concerns me. And that’s not just about my daughter.

McMahan thinks that the disagreement turns on denying the particularity of a mother’s relation to her own child. This completely misses Kittay’s point. Her point is primarily about the general meaning of being human, not the meaning of her particular relationship to her daughter. She is arguing against ableism; she is arguing against the idea that what it is to be human is a bundle of capacities. That idea is a terse encapsulation of the definition of ableism as a conditioning principle described above. Although she references her experiences as a mother, those experiences are referenced by Kittay as an entry point to her concerns about the social and political implications of operating with the principle of ableism as one’s default. If individual abilities are what ultimately create, comprise, and/or confer value upon the life of an individual, what will that belief imply for a society aimed at egalitarian ends? It will imply a society that lodges worth in what various beings can do. If the increasing horrors of climate change and the curtailment of the existence of nearly all species on earth are not enough reason to think that lodging worth in individual capacity is a problematic way to conceive of the ultimate stakes of moral obligation and deliberation, I’m not sure what would be. For thinkers such as Peter Singer, whose focus largely concerns the treatment of non-human animals as compared to human animals, perhaps the deepest and sadly ironic tragedy here is that this view could profoundly undermine the treatment and moral standing of any number of animals, human or otherwise. Though I have offered some reasons why ableism is morally problematic as a principle, defending that view is not in fact my primary aim. I could hardly achieve that aim here given the countless defenses given in many different scholarly and political contexts by disability studies scholars and disability activists; there is simply not space to rehearse, much less do service to, those arguments (cf.

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Garland-Thomson 1996; Dolmage 2017; Nario-Redmond 2019). My primary aim has been to show that despite the fact that the principle of ableism lies at the heart of bioethical inquiry and biomedical practice, it has rarely been acknowledged as such. More specifically, it has rarely been acknowledged as a conditioning principle. I analyzed the (in)famous exchange between Eva Kittay, Jeff McMahan, and Peter Singer as an example to explore how the principle of ableism in fact functions as a conditioning principle and to show how its function is problematic, regardless of which side one ultimately takes in that debate or in related others. Insofar as conditioning principles can have these sorts of effects and have them under the radar, as it were, this raises substantive concerns about the role of conditioning principles for any given theoretical domain in which they exert an influence, not least of which are the fields of bioethics and the practice of medicine.

5.4  Ableism and Ideal Theory Conditioning principles do not merely arise out of nowhere—they arise out of the background beliefs, judgments, and interpretations through which our development as social creatures arises. But most philosophers pride themselves on working outside or at least in a critical relationship to such background phenomena. So why, as I have argued, would ableism have functioned for so long in so many domains related to disability? I find that one of the better explanations for this is due to the historical role of ideal theory in philosophical work concerning human nature and social relations. Consider that to hold claim (1), one must be ignorant of research in phenomenology, ecological psychology, philosophy of disability, social ontology, and cognitive neuroscience to find the idea that abilities or capacities are properties of individuals not worthy of debate. Consider that one must be ignorant or insensitive to the profound moral implications of claim (2) with respect to research concerning human rights, peace and justice studies, and genocide studies. Consider that in order to hold claim (3), one must be ignorant of research in cultural anthropology, sociology (especially medical sociology), and, for that matter, history to think that ability values are not profoundly determined by a given historical and socio-cultural milieu. Finally, consider that one must be profoundly ignorant of disability history and disability studies to assume that having a disability eo ipso counts as a lack or that those disabled people who find it otherwise are mistaken about their own experience. Claims (1)–(4) will, given the evidence referred to above, act as drivers for injustice. What’s more, and as a significant number of scholars in social and political philosophy have argued, the principle of justice—bracketing whatever conditioning principles might underlie its understanding and application in any given case—is itself in important respects in tension with the realization of justice insofar as the principle of justice and the various theoretical apparatuses deployed to treat it are understood via the methods and terms of ideal theory (Simplican 2014; Mills 1997; Pateman 1988).

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Conditioning principles do the work of ideology: presenting contestable, questionable claims as premises or facts for thought and action. They undercut philosophical inquiry otherwise committed to various values by hiding themselves from critical view. In all these ways, conditioning principles should be a concern for everyone dedicated to critical reflection in the service of a more just world. As Charles Mills put this in his seminal article, “‘Ideal theory’ as ideology,” “the ideal theory more dominant in mainstream ethics is in crucial respects obfuscatory, and can indeed be thought of as in part ideological, in the pejorative sense of a set of group ideas that reflect, and contribute to perpetuating, illicit group privilege” (2005, 166). Conditioning principles are by definition obfuscatory, and insofar as they support unjust, unequitable group privileges, they are unethical. This is why whatever it means to do nonideal theory in bioethics, it must include undoing the theoretical obfuscations that support the privileged and hurt the marginalized. Understood in this light, when conditioning principles operate in ways that support extant privileges and maintain extant oppressions, conditioning principles can easily hide under the banner of “ideal theory” despite their role in hurting the marginalized. They can easily hide as things toward which we all, under veils of ignorance, would choose for a just society where we do not ahead of time know our place and station. But the very idea of “our place” in a society, however rouletted, is already shaped by the conditioning principle of ableism. Most take it as obvious that what one can do, the abilities or capacities one “has,” will play a determinate role in one’s wellbeing in any given society. As discussed above, this is so engrained that it sounds absurd to some. And yet, that assumption about individual ability evidences a profound ignorance about the meaning of ability and disability. This is one of the problems with ideal theory: the conditioning principles that underwrite the decision-making of those under the veil of ignorance do not receive the scrutiny they deserve. Debates over ideal vs. nonideal theory often function as a proxy for a far more fundamental philosophical question: should philosophical analysis attend to people’s lived experience and if so, in what ways? If one works in certain domains of logic or philosophy of physics, for example, this question might miss the mark and defensibly so. But it is necessarily on the mark in bioethics and socio-political philosophy, for these fields, in their many academically, clinically, and policy oriented variations, can wield a profound impact on a wide range of practices in the real world. The arguments I have proffered concerning conditioning principles is one way of arguing that without nonideal theory, these fields—and bioethics in particular—are doomed to reproduce the values and norms of privileged groups. What, then, would it mean to make decisions behind veils of ignorance that are not predicated upon conditioning principles such as ableism? Until we begin asking that question, the problem of ableism in particular and the problem of conditioning principles in general will go unresolved.

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5.5  Ableism and Epistemologies of Ignorance One might at this point counter: humans are heuristic beings. We use a panoply of shortcuts in order to process and interpret the profound complexity of lived experience, much of which is implicit, vague, or otherwise ambiguous. Heuristics are not just defensible, but necessary. The idea of conditioning principles, the critic might continue, is thus a red herring to attack habits of thinking when the problem is not the form of the habit, but the content of the thinking. Principles of course create epistemic schemas that function as ready-to-use filters for one to quickly categorize, organize, and assign meaning to a wide range of phenomena: that is exactly what they should do. And, furthermore, humans need such cognitive heuristics to live and to survive. For such a critic, the argument of this paper is but a smokescreen. I think this objection is wrong for at least two reasons. First, the issue of conditioning principles in bioethics and biomedical practice in particular does not turn on the prevalence of heuristics or prevalent biases such as confirmation bias or other psychological or existential propensities—whether ultimately explained by prosocial traits of evolutionary biology or widespread personal psychological habits developed to avoid discomfort, existential drives, or what have you. That is to say, the issue cannot be explained because humans are, point of fact, faulty thinkers. Whatever merit analyses of those sorts may have, the problem of conditioning principles I have outlined  turns instead on the tension between the explicit normative goals of bioethical inquiry and biomedical practice and the discursive, reflective habits deployed by those in that domain. The concern with conditioning principles in these domains is ethical, not psychological. Insofar as conditioning principles exist and exist without morally defensible analysis and reflective concern, these habits run directly up against the normative goals of medicine as an institution devoted to care. The mere fact that humans offload, simplify, or act in bad faith with respect to ethical deliberations that run up against various cognitive habits is not a proper defense of such actions. As a rule, matters of fact don’t presumptively settle normative concerns. Also, there is a crucial difference at play here. Even if conditioning principles like that of ableism operate “in the background” like stock cognitive heuristics examined by researchers in psychology or cognitive neuroscience, they are distinct in a crucial way. Unlike many cognitive heuristics deployed by humans, principles are subject to voluntary control and re-education. If you think for instance about visual illusions, you can learn about an illusion all you want and try not to succumb to it, but you will always fall for it. When conditioned by certain factors resulting from typical human visual sensory perception, you will forever see certain lines as having different lengths when they are really the same length, to reference the Muller-Lyer illusion. Principles aren’t like this—coming to understand a principle as wrong or a principle as correct can fundamentally and permanently change how one judges, perceives, etc. Furthermore, not knowing that there are principles undergirding one’s thinking and, further, failing to subject those principles to the same sort of critical analysis

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that one would subject other aspects of one (and other’s) thinking is not simply a question of mistake or simple ignorance. It can be a question of epistemic justice. If one turns to research in social epistemology, the role of conditioning principles can often be seen as a question of what Gaile Polhaus Jr. calls willful hermeneutical ignorance and what Kristie Doston terms contributory injustice (Dotson 2012; Pohlhaus 2012). That is to say, by failing to engage in active efforts to recognize and rectify conditioning principles, a person is in fact willfully choosing to remain ignorant. If I believe that all humans have equal value, but I also believe that people make certain choices that lead to their health, then I might blame an individual for their Type II diabetes or their chronic lower back pain. And I might do so despite the overwhelming evidence from social epistemology that it is not “personal choice,” but social location that best predicts individual health outcomes; it is neither personal choice, nor even genomic code that best predicts health: it is one’s zip code. While this general concern holds across any number of cases, it is especially problematic ethically if one’s social position involves privilege (Yancy 2006). Insofar as one’s social position leads one to simply omit the hermeneutical resources of those who do not hold the particular privileges of one’s own position, one commits willful contributory injustice (Dotson 2012). It is in this sense that conditioning principles can be drivers of epistemic injustice. How is that so? With respect to the analysis provided above, note that the level of explicitness of a given principle is in inverse proportion to its service toward epistemologies of ignorance. That is to say, the level of explicitness of a given principle is in inverse proportion to its service toward epistemic mechanisms that maintain the privileges of one’s group and thereby contribute to the production of epistemologies of ignorance. More concretely, conditioning principles such as ableism are especially liable to generate epistemic injustice insofar as the claim that principle makes on an able-bodied person supports, and the way in which it maintains their participation in, the many privileges of able-bodiedness. In this light, conditioning principles can act as the lifeblood of hegemony, of unjust status quos. I have argued that bioethics needs to take seriously the role of conditioning principles, that the principle of ableism is an especially problematic case, and that certain idealizing tendencies of philosophical theorizing are a reason why bioethics has failed at addressing the problem of ableism in particular and of conditioning principles in general. When we assess various bioethical principles and set upon a path to apply them, we do so not in an axiological vacuum but in a space that is already saturated with evaluations, judgments, and even principles, implicit or explicit. This normative plenum inevitably and profoundly conditions even our principled reflection in scope, content, method, and character, and we are responsible to take such things into consideration as part of moral inquiry. There is a way to avoid conditioning principles both in philosophy and in the field of biomedical ethics: we must become more critical about principles. We must engage in the work of genealogy, of critical intellectual history, and of the sort of humanistic inquiry that leaves no premise unturned. This is a high bar for thought, for practice, and for the infinite

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places at which they meet. But it is a needed metric to deliver on the promise of a more just, equitable, and liveable world. Acknowledgments  I am very grateful to the detailed and insightful feedback of the editors, David Peña-Guzmán, and Eva Feder Kittay.

References Albrecht, Gary L., and Patrick J.  Devlieger. 1999. The disability paradox: High quality of life against all odds. Social Science & Medicine 48: 977–988. Ariga, Samantha and Henry J.  Heiman. 2018. Beyond health care: The role of social determinants in promoting health and health equity. Kaiser Family Foundation. http://www.kff. org/disparities-­policy/issue-­brief/beyond-­health-­care-­the-­role-­of-­social-­determinants-­in-­ promoting-­health-­and-­health-­equity/. Accessed 2 Dec 2019. Arras, John D. 2001. A method in search of a purpose: The internal morality of medicine. Journal of Medicine and Philosophy 26 (6): 643–662. Bagenstos, S., and M.  Schlanger. 2007. Hedonic damages, hedonic adaptation, and disability. Vanderbilt Law Review 60 (3): 745–797. Barnes, Elizabeth. 2016. The minority body: A theory of disability. Oxford: Oxford University Press. Basnett, Ian. 2001. Health care professionals and their attitudes toward decisions affecting disabled people. In Handbook of disability studies, ed. Kathryn Seelman, Gary Albrecht, and Michael Bury, 450–467. Thousand Oaks: SAGE. Beauchamp, Tom L., and James F.  Childress. 2001. Principles of biomedical ethics. 5th ed. New York: Oxford University Press. Ben-Moshe, Nir. 2017. The internal morality of medicine: A constructivist approach. Synthese 196: 4449–4467. Brandom, R.B. 2019. A spirit of trust: A reading of Hegel's phenomenology. Cambridge: Harvard University Press. Cassam, Q. 2018. Vices of the mind: From the intellectual to the political. Oxford: Oxford University Press. Clouser, K.D., and B. Gert. 1990. A critique of principlism. Journal of Medicine and Philosophy 15 (2): 219–236. Dolmage, Jay. 2017. Academic ableism. Michigan: Michigan University Press. Dotson, Kristie. 2012. A cautionary tale. On limiting epistemic oppression. Frontiers: A Journal of Women Studies 33 (1): 24–47. https://doi.org/10.5250/fronjwomestud.33.1.0024. Evans, John H. 2000. A sociological account of the growth of principlism. The Hastings Center Report 30 (5): 31–38. https://doi.org/10.2307/3527886. ———. 2012. The history and future of bioethics: A sociological view. Oxford: Oxford University Press. Fineman, Martha. 2004. The autonomy myth: A theory of dependency. New York: New Press. Fracchia, Joseph, and R.C.  Lewontin. 1999. Does culture evolve? History and Theory 38 (4): 52–78. https://doi.org/10.1111/0018-­2656.00104. Francis, Leslie. 2017. The significance of injustice for bioethics. Teaching Ethics 17 (1): 1–8. Garland-Thomson, Rosemarie. 1996. Extraordinary bodies: Figuring physical disability in American culture and literature. New York: Columbia University Press. ———. 2020. How we got to CRISPR: The dilemma of being human. Perspectives in Biology and Medicine 63 (1): 28–43. https://doi.org/10.1353/pbm.2020.0002. Goodley, Dan. 2014. Dis/ability studies: Theorising disablism and ableism. London: Routledge. Guilmette, Lauren. 2016. Curiosity-as-care: Feminist philosophies of disability, Foucault, and the ethics of curiosity. APA Newsletter on Philosophy and Medicine 18 (1): 46–50.

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Jonsen, A.R., S.  Toulmin, and S.E.  Toulmin. 1988. The abuse of casuistry: A history of moral reasoning. Berkeley: University of California Press. Kafer, Alison. 2016. Feminist, queer crip. Bloomington: Indiana University Press. Kant, Immanuel. 1998. Critique of pure reason. In The Cambridge edition of the works of Immanuel Kant. Trans. Paul Guyer and Allen W.  Wood Cambridge/New York: Cambridge University Press. Kittay, Eva Feder. 1999. Love’s labor: Essays on women, equality, and dependency. New York: Routledge. ———. 2006. At the margins of moral personhood. Ethics 116 (1): 100–131. https://doi. org/10.1007/s11673-­008-­9102-­9. ———. 2009. The personal is philosophical is political: A philosopher and mother of a cognitively disabled person sends notes from the battlefield. Metaphilosophy 40 (3–4): 606–627. https:// doi.org/10.1111/j.1467-­9973.2009.01600.x. McMahan, J. 2005. Causing disabled people to exist and causing people to be disabled. Ethics 116 (1): 77–99. Mills, Charles W. 1997. The racial contract. Ithaca: Cornell University Press. Mills, Charles W. 2005. “Ideal theory” as ideology. Hypatia 20 (3): 165–184. Morar, Nicolae, and Joshua August Skorburg. 2018. Bioethics and the hypothesis of extended health. Kennedy Institute of Ethics Journal 28 (3): 341–376. Nario-Redmond, Michelle R. 2019. Ableism: The causes and consequences of disability prejudice. Hoboken: Wiley. Nguyen, C. Thi. 2018. Echo chambers and epistemic bubbles. Episteme 3: 68–79. Ouellette, Alicia. 2011. Bioethics and disability: Toward a disability conscious bioethics. New York: Cambridge University Press. Pateman, Carole. 1988. The sexual contract. Stanford: Stanford University Press. Paul, L.A. 2014. Transformative experience. Oxford: Oxford University Press. Pena-Guzman, David, and Joel Michael Reynolds. 2019. The harm of ableism: Medical error and epistemic injustice. Kennedy Institute of Ethics Journal 29 (3): 205–242. Pohlhaus, Gaile. 2012. Relational knowing and epistemic injustice: Toward a theory of willful hermeneutical ignorance. Hypatia 27 (4): 715–735. Potrc, M., V. Strahovnik, and M. Lance. 2010. Challenging moral particularism. New York: Taylor & Francis. Reynolds, Joel Michael. 2018. The extended body: On aging, disability, and well-being. The Hastings Center Report 48 (S3): S31–S36, eds. Nancy Berlinger, Kate de Meideros, and Millie Solomon. https://doi.org/10.1002/hast.910. ———. Forthcoming. Worthy life: Disability, pain, and morality. Minneapolis: University of Minnesota Press. Rieseberg, Loren H., Sheri A. Church, and Carrie L. Morjan. 2004. Integration of populations and differentiation of species. New Phytologist 161 (1): 59–69. Scuro, Jennifer. 2017. Addressing ableism: Philosophical questions via disability studies. Lanham, MD: Rowman & Littlefield. Simplican, Stacy Clifford. 2014. The capacity contract: Locke, disability, and the political exclusion of ‘idiots’. Politics, Groups, and Identities 2 (1): 1–14. https://doi.org/10.1080/2156550 3.2013.876918. Singer, Peter. 2009. Speciesism and moral status. Metaphilosophy 40 (3–4): 567–581. Smith, David Livingstone. 2011. Less than human: Why we demean, enslave, and exterminate others. New York: St. Martin’s Press. ———. 2016. Paradox of dehumanization. Social Theory and Practice 42 (2): 416–443. Stramondo, Joseph A. 2014. Disabling bioethics: The case for a disability moral psychology and epistemology for bioethics for bringing my attention. Dissertation, Michigan State University. ———. 2016. Why bioethics needs a disability moral psychology. Hastings Center Report 46 (3): 22–30. https://doi.org/10.1002/hast.585.

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Symons, Xavier. 2019. Pellegrino, Macintyre, and the internal morality of clinical medicine. Theoretical Medicine and Bioethics 40 (3): 243–251. Washington, Harriet A. 2008. Medical apartheid: The dark history of medical experimentation on black Americans from colonial times to the present. New York: Anchor Books. Wilson, Duncan. 2013. What can history do for bioethics? Bioethics 27 (4): 215–223. https://doi. org/10.1111/j.1467-­8519.2011.01933.x. Yancy, George. 2006. Black bodies, white gazes: The continuing significance of race. Lanham, MD: Rowman & Littlefield.

Chapter 6

Bioethics Education and Nonideal Theory Nabina Liebow and Kelso Cratsley

In the U.S., bioethics has increasingly become a standard part of medical school education and the training of healthcare professionals more generally. While only 12 U.S. medical schools had an ethics teaching program in 1972, now all do (Have and Gordijn 2012). This is a promising development, as it has the potential to help future practitioners become more attentive to moral concerns and, perhaps, better moral reasoners. In this chapter, we focus on one specific concern that bioethicists have raised about the state of ethics education in the medical context; namely, that ethics is often taught in oversimplified ways that result in healthcare practitioners having a truncated understanding of what “doing ethics” should look like. As a consequence, this reductive teaching model can result in clinicians failing to recognize relevant ethical considerations which can hamper quality of care. Our chapter is a response to this worry. We begin by giving a fuller explanation of this concern, and then turn to the growing recognition within the field of bioethics that nonideal theory can play an important role in formulating normative recommendations in clinical practice (Sect. 6.2). The next section lays out a range of theoretical and practical commitments that we suggest fall under a nonideal approach to bioethics (Sect. 6.3). To give readers a more concrete idea of what we have in mind, our discussion then focuses on two specific areas of bioethics education: teaching units on race and medicine (Sect. 6.4), and those that focus on stigma and coercion in mental health (Sect. 6.5). Spotlighting these two under-discussed areas of bioethics allows us to show how including them in the curriculum can help bioethics education better align with nonideal commitments, thereby responding to worries about medical ethics

N. Liebow (*) · K. Cratsley Department of Philosophy & Religion, American University, Washington, DC, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 E. Victor, L. K. Guidry-Grimes (eds.), Applying Nonideal Theory to Bioethics, Philosophy and Medicine 139, https://doi.org/10.1007/978-3-030-72503-7_6

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education. We also hope our discussion encourages others to include these topics in bioethics conversations more broadly.1

6.1  Bioethics Education In 1985, Culver, Clouser, and Gert et  al. delivered the “recommendation that all medical schools require basic instruction” in medical ethics in what is now referred to as the DeCamp report. In this report, the authors offered a list of curricular recommendations. One of these recommendations was that medical practitioners should be taught “the ability to identify moral aspects of the medical practice” (Culver et al. 1985, 254). To explain this suggestion they state, “all decisions, suggestions, or actions of physicians” in a “position to ameliorate harm caused by illness, through the use of treatments that may themselves be harmful” have “a moral aspect” (Culver et al. 1985, 254). These “moral aspects”, they argue, often go unnoticed and physicians therefore fail to fully comprehend the pervasiveness of moral considerations in medical practice. The authors of the DeCamp report advocate for medical ethics training that helps practitioners recognize the moral aspects of their everyday work. More recently, Carrese et al. (2015) have issued a similar recommendation in the Romanell report: “Upon completion of medical school or a residency training program, learners will…recognize ethical issues that may arise in the course of patient care” (747). Since the DeCamp report, many medical schools have introduced ethical training into their programs; however, these programs often lack funding and there is no firm consensus over what subject matter and approach this education should include and utilize (Cook et al. 2019). While it is encouraging that bioethics education is being more widely taught, we share a concern with Fiester (2007) about how this education often unfolds. Fiester argues that the way in which clinical ethics is taught often prevents students from being able to fully identify the moral aspects of medical practice, thus impeding the goals laid out in the the DeCamp report (1985) and the Romanell report (2015). In particular, Fiester warns that clinical ethics is taught in an oversimplified way that results in students possessing a truncated understanding of bioethics and what ethical considerations lie at the heart of medical practice. In both graduate and undergraduate bioethics teaching, educators typically attempt to teach students ethical reasoning via the principlist framework first developed by Beauchamp and Childress (1979/2019). Students are taught to reason through ethically challenging cases with four major principles: respect for autonomy, beneficence, nonmaleficence, and justice. Principlism as a methodological approach is a complicated, nuanced view that, when applied correctly, can yield a

1  The literature on bioethics education tends to focus on clinical ethics training in medical schools, and this chapter largely follows suit. But this discussion also has potential implications for research ethics, as well as ethics education in all of the allied health professions.

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rich moral understanding of specific cases and medical practice more generally.2 The issue Fiester raises isn’t with principlism, per se. Rather, her critique stems from her claim that a “very abridged substitute” for principlism is what often gets taught to aspiring health practitioners (Fiester 2007, 684). Fiester calls this substitute approach “the principlist paradigm” and explains that it is: more akin to a checklist than an exposition of a nuanced moral framework…[and it] operates in practice like a short oversimplified diagnostic test that scans for a handful of ethical issues and then makes its normative assessment and recommendation based entirely on that reductive set of ethical concerns. (2007, 684)

Essentially, when confronted with an ethically challenging case, students are instructed to run through the list of ethical obligations outlined by the “principlist paradigm” to help isolate the ways in which the case is ethically challenging (e.g. when a patient refuses life saving treatment, the practitioner’s obligation to respect patient autonomy may be in conflict with her duty to deliver medical care that can help the patient recover from an illness). “Doing ethics” therefore gets reduced to consideration of a fixed (and abridged) list of ethical concerns and takes a checklist style approach.3 Fiester argues that this reductive focus on adherence to principles is problematic, since the list of ethical considerations taught on the principlist paradigm is limited, and, therefore, using the paradigm can result in clinicians missing important ethical considerations at play in the situation at hand. To better understand Fiester’s critique, consider the following hypothetical case: A 17-year old African American youth is diagnosed with HIV by his primary care physician. After his diagnosis, he is referred to an HIV clinic for an initial assessment. He attends the appointment with his mother. During the appointment, it quickly becomes apparent that he has started to show the signs and symptoms associated with a depressive episode. Physicians on site recommend a referral for outpatient mental health counseling, but the patient and his mother appear uncomfortable with the proposed psychiatric diagnosis, and are reluctant to schedule an outpatient appointment. Throughout the conversation the medical team continues to suggest that the patient seek mental health counseling, despite the initial dismissal from the patient and his mother. The medical team is troubled by the patient’s refusal to seek psychiatric help as part of a package of recommended care, and start to view the mother and son as a “difficult” case. The patient’s mother demands that, before leaving, the medical team get her son on a course of antiretroviral therapy. The clinical encounter ends in disagreement, without a clear treatment plan, and with a breakdown of communication. The patient’s mother is frustrated and leaves the clinic with her son, refusing to schedule a follow-up appointment.

Fiester points out that, when given a case such as this one, medical students are trained to view it as a conflict between patient autonomy and the clinician’s duty of beneficence. Honoring the patient’s autonomy would involve providing them with 2  To be clear, our primary interest here is in a particular application of principlism that does not allow for nuanced analysis. More recent versions of principlism that emphasize the method of “specification” are not necessarily vulnerable to this charge, in our view. 3  Fiester’s argument is supported by the fact that the Accreditation Council for Graduate Medical Education (ACGME) outlines ethics standards that include a focus on exhibiting adherence to ethical principles: “Residence must demonstrate…an adherence to ethical principles” (ACGME 2017).

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the knoweldge they need to make an informed decision about care—in this case, explaining the severity of the patient’s mental health symptoms to his mother and the benefits of psychiatric care and how this would ultimately benefit his HIV treatment. If attempting to get the patient and his parent to agree to psychiatric care followed by a return to the clinic failed (which in this case it did), they might decide to honor patient autonomy (which they end up doing), thus letting the patient leave the clinic without a plan for care, psychiatric or otherwise. This type of reasoning, and resulting approach to the case, would allow the medical team to recognize at least some of the relevant moral principles and would serve as a guide for how to proceed. But, Fiester argues, reducing ethical considerations in cases like this one to simple principles causes clinicians to miss relevant moral concerns. For example, with regard to this case, Fiester might argue that by labeling the patient a “difficult case” clinicians here fail to fully recognize the patient’s suffering and the emotional turmoil and stress he and his mother have undergone up to this point. This represents a failure to fulfill the moral obligation to acknowledge other’s pain and suffering. In addition, the clinicians have clearly failed to secure the trust and confidence of the patient (and his mother). This would have required a more careful style of engagement, and a concerted effort, by the whole team, to avoid labeling patients as “difficult” or “problem” cases.4 From this brief case example, we can see that the principlist paradigm approach can fail to give clinicians the full set of tools needed for moral reasoning and can lead them to miss relevant moral concerns. For the purposes of this discussion, we are most interested in the ways in which the principlist paradigm represents an approach more akin to the commitments of ideal theory and the ways in which teaching bioethics this way can thwart substantive engagement with the commitments of nonideal theory. Essentially, the paradigm sets out ideals that students are instructed to strive for (“respect patient autonomy,” “practice nonmaleficence,” etc.) without encouraging students to think beyond these considerations. This method also supports the idea that overarching principles should guide ethical decision making, potentially at the expense of a deeper or broader understanding of the medical, social, or historical context. This concern leaves us with one main question: If the principlist paradigm is not a sufficient or adequate approach to teaching students bioethics, what approach should be taught? In response to this question, we suggest that a good place to look for answers lies in bioethics’ turn toward nonideal theory. Our chapter therefore helps to further unpack and explore what this turn toward nonideal might look like in bioethics education and how this can help clinicians with cases like the one discussed above.5 4  There is some empirical support for the type of concern developed by Fiester. For example, focus groups of medical students reveal a general familiarity with ethical theory, although they also report difficulties putting such ideas into practice and request more training in practical ethics (Stites et al. 2018). 5  A further consideration is the question of how exactly a robust and nuanced version of priniciplism should incorporate nonideal commitments. We do not pursue this broader theoretical project.

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6.2  Nonideal Theory What is nonideal theory? Political theorists and bioethicists alike have debated— and elaborated on—the notion of nonideal theory for decades. In this section we aim to outline some basic tenets of nonideal theory. The introduction of the ideal/ nonideal distinction has its roots in Rawls’s account of justice. On Rawls’s approach, political theory should be generated with the assumption that society is “well ordered,” working under the broad heading of “ideal theory.” Having this abstract, hypothetical picture in mind, he argues, helps us build a vision of justice that we can work toward. But what does a “well ordered” society look like and what assumptions should we theorize from in order to approximate this? Rawls states that “a society is well ordered when it is not only designed to advance the good of its members but when it it is also effectively regulated by a public conception of justice” (Rawls 1971, 4–5).6 This conception, then, starts with a general presumption of full—or “strict”— compliance with shared principles of justice. Alternatively, another interpretation of ideal theory might assume an “idealized social ontology,” which maps onto the classical liberal ideal of atomistic individuals free of dominance, coercion, or oppression (Mills 2017, 75). On this interpretation, ideal theory runs the risk of ignoring social inequalities or oppression and their consequences when forming normative recommendations (Mills 2017, 76). If theory made under such assumptions is called ideal theory, what is nonideal theory? According to Rawls, in contrast to the presumed compliance with principles of justice found in ideal theory, nonideal theory focuses on the principles required to redress injustice (Rawls 1971). In other words, nonideal theory refers to conceptions that are generated with unjust background conditions and/or a lack of full compliance in mind; it is developed with the aim of reaching the ideal society outlined by utilizing ideal theory. More generally, moving away from the purely Rawlsian understanding of the term, nonideal theory is grounded in the imperfect, unjust state of the society for which one is creating normative recommendations. Nonideal theory is thus closely tied to the moral significance of historical realities and social context. The idea that we should adopt a nonideal approach when it comes to generating bioethical theory has become increasingly popular (Arras 2010; Powers and Faden 2008; Kittay 2008). This turn toward nonideal theory can signal a range of stances about the relationship between nonideal and ideal theory. The question about what role ideal theory should occupy has opened up a thorny debate that we will simplify into three basic positions. We will say a little about each approach here and its proponents; however, our aim is not to adjudicate between these positions. Instead, we will ultimately suggest some overarching commitments that we think all three 6  More precisely: “…(1) everyone accepts and knows that the others accept the same principles of justice, and (2) the basic social institutions generally satisfy and are generally known to satisfy these principles” (Rawls 1971, 4).

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positions would generally agree on with regard to nonideal theory. Later in the paper, we will use these commitments to guide our recommendations for how to teach bioethics in a way that is responsive to nonideal theory.

6.2.1  Three Approaches to the Ideal/Nonideal Distinction Rawlsian Approach  In The law of peoples Rawls writes that, “…nonideal theory presuposes that ideal theory is already on hand. For until the ideal is identified, at least in outline—and that is all we should expect—nonideal theory lacks an objective, an aim, by reference to which its queries can be answered” (1999, 89–90). On this view, we need both ideal theory (first) and nonideal theory (second), separately, to help us achieve a just society. However, this approach prioritizes ideal theory and views nonideal theory as a vehicle for reaching the vision outlined by ideal theory. The idea that ideal theory is fundamental and represents the blueprint dictating what nonideal theory should be aimed at achieving captures the Rawlsian approach to the relationship between ideal and nonideal theory. Reflective Equilibrium as Theory  A stance developed in the bioethics literature maintains the need for both “high theory” and “on the ground theorizing,” but seeks to develop a strategy that places the ideal and nonideal in closer conversation with one another and has them working in tandem. Borne of a critique of ideal theory, largely due to its failure to provide sufficient action guidance, this view develops an interpretation of Rawls’s notion of “reflective equilibrium”: “In contrast to earlier methodological formulations within bioethics that gave foundational status to, say, moral principles or intuitions about paradigm cases, reflective equilibrium finds justification through the coherence of all these elements, each of which impinges on all the others in a multi-directional dialectic” (Arras 2010). This approach pushes back against the idea that “moral theory and the formulation of moral principles is an entirely separate enterprise from applied ethics or the business of doing ethics in nonideal, everyday life” (Arras 2010). On this approach, the relationship between ideal and nonideal theory is more fluid. While abstract principles might inform one’s notion about how to proceed in an ethically challenging case, on-the-ground facts and intuitions from those familiar with the context can also help us to rethink high-level moral ideals. This two-way, intertwined relationship recognizes the benefit of bringing these different types of theory into conversation with one another and uses both to rethink the other.7

7  In principle, this allows for the reversal of ideal theory’s priority, given the possibility that starting from nonideal theory can help identify courses of action before an ideal conception is available and complete. For discussion of one such “anticipatory” approach to nonideal theory, see Sreenivasan (2012).

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Ideal Theory as Ideology  Mills (2005/2017) makes a number of claims about ideal theory, all of which support its rejection. To understand his argument, we must first clarify his understanding of “ideal theory.” Mills allows that there are multiple senses in which one could theorize using ideals. For instance, one might create a descriptive model that offers a schematized pictures of the actual working of a thing. This type of idealization starts with the real thing, and then abstracts from it to offer a model. Mills thinks this type of ideal abstraction is helpful, and often necessary, for anti-oppressive projects: we must generate a descriptive model of how oppression functions in order to understand it, resist it, and promote more ethical alternatives. Put simply, any moral or political theory must start with the brute fact of injustice. In contrast, idealized models that start from the ideal (as opposed to the real thing) to generate a picture of how a thing should be (rather than how a thing is) run the risk of being unhelpful if they stray too far from how things actually are. For example, if we start with an idealized model of how a scientific experiment ought to work without taking into consideration the tools available, physical attributes of the materials, or the experimental environment, it might be difficult for the idealized experiment to be helpful when executing one in the real world. In the case of social and political idealizations, Mills argues that what is theorized as the ideal is not an abstraction drawn from reality (viz. from a full picture of how society functions) but instead from imagined exemplars of how things ought to be. One of the big issues Mills highlights is, because Western philosophy is dominated by white, male, and upper-class perspectives, the ideals as exemplars generated in the literature map onto the experiences and values of wealthy white males. However, given the unequal treatment of women, minorities, and those living in poverty, these ideals don’t map onto the way things really are for most people. This makes them ineffective for resisting oppression. Mills makes the further claim that ideal theory represents “a set of group ideas that reflect and contribute to perpetuating illicit group privilege” and, for this reason, are morally problematic, to say the least (Mills 2005, 73). In contrast, Mills argues that nonideal theory is more helpful with achieving feminst and antiracist goals, since it is rooted in what’s happening on the ground and takes into consideration the social context of oppression, inequality, and marginalization.

6.2.2  Shared Commitments of Nonideal Theory While there are multiple positions outlining the relationship between ideal and nonideal theory, each approach arguably shares some common, closely related tenets about what a commitment to the nonideal involves: 1. Theoretical idealizations provide an incomplete picture of the demands of our ethical and political obligations, commitments, and aspirations

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2. Consideration of historical, social, and economic conditions is a necessary component of ethical and political theory (and its application) 3. Analysis of such considerations in order to directly address, resist, and eliminate social injustice Regardless of a particular theorist’s take on the relationship between ideal and nonideal theory, we hold these tenets central to the project of making a shift toward the nonideal in bioethics. The question is, then, what might it look like to more fully incorporate such an approach into bioethics curricula? In the next two sections, we begin to respond to this question by illustrating how this approach can be applied to two under-discussed areas of bioethics. The first concerns ethical issues at the intersection of race and medicine. And the second has to do with the ethics of stigma and coercion in mental health.

6.3  Race and Medicine In this section we offer some suggestions for what a nonideal commitment to bioethics education might look like with regard to education focused on one of the biggest ethical issues of our time: race. Furthermore, we argue that ethics education lacking nonideal commitments with regard to the intersection of race and ethics runs the risk of reinforcing white supremacy. Failing to adopt nonideal commitments in this domain of ethics education therefore has significant implications at multiple levels of analysis—ranging from the quality of care that individual patients receive to the perpetuation of institutional values and practices that support oppressive norms, policies, and practices. To begin to establish the importance of race education in medical contexts, we will first provide some background. White supremacy is: …A political, economic and cultural system in which whites overwhelmingly control power and material resources, conscious and unconscious ideas of white superiority and entitlement are widespread, and relations of white dominance and non-white subordination are daily reenacted across a broad array of institutions and social settings. (Ansley 1989/1997)8

White supremacy is therefore an injustice deeply embedded into the fabric of society and “pervades every vestige of our reality” (Akintunde 1999, 2; DiAngelo 2018, 72). White supremacy is inseparable from “race” as a concept. Historically and currently, race categories get treated as biological or genetic classifications; however, they are more accurately understood as socio-political groupings that do not correspond with natural divisions between human groups (Mills 1998; Dupre 2008; Haslanger 2012).9 Rather than a biological given, the creation of race 8  Our usage of the term corresponds with contemporary trends and the literature on critical race theory (Hatch 2007). 9  For further discussion of the ongoing debates surrounding these issues, see Glasgow et al. (2019).

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concepts (white, black, Asian, Latinx, etc.) have been culturally specific and localized. The creation of these categories and the social meaning attached to each one serves to uphold white power and domination: Thus “race” was a mode of classification linked specifically to peoples in the colonial situation. It subsumed a growing ideology of inequality devised to rationalize European attitudes and treatment of the conquered and enslaved peoples. Proponents of slavery in particular during the 19th century used “race" to justify the retention of slavery. The ideology magnified the differences among Europeans, Africans, and Indians, established a rigid hierarchy of socially exclusive categories underscored and bolstered unequal rank and status differences, and provided the rationalization that the inequality was natural or God-­ given. (American Anthropological Association Statement on Race 1998)

Historically, in the US context, the construction and use of race concepts went hand in hand with the economic and political goals of Anglo-Americans—and later, more generally, European-Americans. Thus, race concepts are themselves instruments of white supremacy. While clearly an injustice and therefore ethically salient, what does the relationship between race and white supremacy have to do with medicine? First, race concepts, as we have used them to date, are not biologically defensible, yet they have significant social ramifications which can impact health. Second, the ideology that race is a biological or natural kind has been reproduced and supported by science and medicine over the decades. By pointing to a biological or “natural” explanation for racial hierarchies, medicine helped to justify and more deeply entrench ideas of white superiority and entitlement. Scientific work that supported the argument “that Africans, Indians, and Europeans were separate species, with Africans the least human and closer taxonomically to apes” helped forward a conception of people of color as subpersons, more akin to animals, and therefore morally acceptable to exploit for white gain, economic and otherwise (American Anthropological Association Statement on Race 1998; Mills 1997). To take a historical example of the relationship between medicine and white supremacy consider that: In 1851, Dr. Samuel A. Cartwright, a Louisiana surgeon and psychologist, filed a report in the New Orleans Medical and Surgical Journal on diseases prevalent among the South’s black population. Among the various maladies Dr. Cartwright described was ‘drapetomania’ or ‘the disease causing slaves to run away.’ Though a serious mental illness, drapetomania, wrote Dr. Cartwright, was happily quite treatable: ‘The cause, in the most of cases, that induces the negro to run away from service, is as much a disease of the mind as any other species of mental alienation, and much more curable. With the advantages of proper medical advice, strictly followed, this troublesome practice that many negroes have of running away can be almost entirely prevented.’ (Eakin 2000)

Included in the course of “treatment” Cartwright recommended for “drapetomania” was “whipping the devil” out of slaves. This highlights how white supremacy has been supported by medicine and medical practice, but also how medicine is influenced by the larger social context of oppression. While this example is antiquated, the fraught relationship between racism and medicine still persists. And this continuation occurs despite the fact that experts have debunked the notion of race as a biological or genetic kind. For a more

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contemporary set of examples, consider the the fact that physicians are not only likely to underestimate the severity of black patients’ pain, but are also likely to systematically undertreat black patients for pain when compared to white patients (Cintron and Morrison 2006; Shavers et al. 2010; Goyal et al. 2015). Building off of this research, Hoffman et  al. (2016) investigated the relationship between false beliefs about biological difference between white people and black people and pain treatment recommendations. They found that half of medical student study participants endorsed at least one false belief about black patients (e.g. blacks’ skin is thicker than whites’). They also found that the more false beliefs about black people medical students had, the more they rated black patients as feeling less pain than white patients. Similarly, the higher number of false beliefs participants endorsed about black patients, the less accurate participants were in their treatment recommendations for black patients compared with their treatment recommendations for white patients. In addition to racial disparities in pain treatment, numerous racial health disparities remain evident (Fiscella and Sanders 2016). These disparities coupled with the historical and ongoing relationship between white supremacy and medicine make race an important topic for the education of medical professionals. Given the moral significance of racism in medicine, we suggest that education about race be part of (but not limited to) clinical ethics training. Specifically we suggest that clinical ethics curricula include (1) material that covers modern understandings of race as a social category as opposed to a biological one and (2) material on the mechanisms that sustain and support white supremacy, both historically and contemporarily.

6.3.1  Race as Social Construction In an overview of the literature on race education in medical schools, Olsen (2019) notes that “medical schools tend to reify biological understandings of race” (57). This reification occurs when schools depict race as “a biological risk factor or as genetic associations between a racial minority group and a particular disease” and provide very little teaching about “social understandings of race” and “racism” (Olsen 2019, 57). This is significant not only because this lack of training can impact patient treatment and quality of care, but also because naturalizing existing race concepts—supporting the notion that they are biologically derived—supports white supremacy. This is because doing so promotes and strengthens ideology that justifies racial divisions which work to uphold racist power structures. To be clear, this is not to deny the clinically relevant fact that certain segments of the population are more vulnerable to specific ailments, or even genetic mutations. Rather, the issue lies in clinicians wrongly assuming that race is equivalent to genetic or biological facts about a person (Roberts 2011). In contrast, we suggest that medical schools include curricula that enables students to understand the social nature of race categories and to understand how these categories go hand in hand with racial injustice. While we leave space open for

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pedagogical diversity in how this type of information is conveyed, we discourage educational models that conscript medical students of color into teaching this material. As Olsen (2019) finds, there is a trend to move discussions of race into “small group” formats where students of color are (albeit often tacitly) expected to educate fellow white students about the nature of racism and cultural difference in medical contexts. This pedagogical move not only places a burden on students of color but also makes continuity in learning difficult. With this in mind, we suggest that all students be presented with the same information about the nature of race and that this material is taught to everyone in some depth and with an eye toward the ethical implications of the relationship between race classifications, medicine, and racism.

6.3.2  The Maintenance of White Supremacy In addition to material that educates students about the concept of “race,” we suggest that units on ethics and race include accurate, up to date, information about how white supremacy is structured and maintained. In particular, all students should understand the relationship between macro-level features of society that support white supremacy (e.g. policies, social structures, large scale social patterns) and micro-level phenomena (e.g. desires, emotions, behaviors, interpersonal interactions). Specifically they must understand that micro-level phenomena are the result of and help to perpetuate and support these macro-level features. Along these lines, students should also learn how the individual behaviors and micro-level practices of those in scientific and medical fields can be the result of a white supremacist social context and can, in turn, work to support white supremacy. While the specific content in these units could include a variety of topics, one important area to cover might be the relationship between racial implicit bias in healthcare workers and patient outcomes. The idea that racial health disparities can be related to a variety of factors on both the macro- and micro-level can help clinicians to understand what is at stake, morally, with regard to their interactions with patients of color. It can also help them understand how their behaviors, as clinicians, can help interrupt (or can worsen) patterns that undergird white supremacy. To be clear, our recommendation that clinicians learn about the relationship between micro-level phenomena such as implicit bias is motivated by our desire to supply clinicians with better tools for moral reasoning and engaging with ethically challenging cases.10 We do not suggest, however, that these types of educational units are sufficient to address perpetuated and instantiated racism in clinical encounters. Furthermore, consistent with the turn toward nonideal theory that we endorse in this paper, we suggest that any pedagogical approaches to education surrounding  The presence of implicit biases in physicians and healthcare professionals is well-established (FitzGerald and Hurst 2017), although evidence of the influence of such biases on actual clinical decision-making and treatment recommendations remains equivocal (e.g. Oliver et  al. 2014; Dehon et al. 2017).

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topics like implicit bias must be sensitive to empirical data about the efficacy of various educational approaches.11 When it comes to addressing something as pervasive and serious as systemic racism, no single educational measure can act as a panacea. Rather, our view is that, if clinicians lack tools to recognize the morally salient aspects of cases with regard to race and racism, they run a higher risk of failing to adequately grapple with the moral complexities of a case as well as act in ways that perpetuate white supremacy. Next, as already discussed, it is important that students understand the legacy of biological definitions of race and how they, as clinicians, can perpetuate the notion that race categories are naturalized. Understanding that producing this ideology supports white supremacy can help motivate clinicians to use race concepts accurately and can assist in serving the goal of intervening on racist patterns such as racial health disparities. Finally, ethics and race curricula should familiarize students with current research on the health effects of racism (Williams et al. 2019).

6.3.3  Applying Nonideal Theory Units such as the two we have discussed in this section embody a nonideal commitment to ethics education. First, they stress the historical, social, and economic conditions that lead to morally unjust patterns of racism. Further, this contextual analysis is treated as a necessary part of understanding and analyzing the ethical considerations of cases. Second, such considerations are mobilized into curricula for the purpose of combating social injustice—in this case white supremacy. It’s important to note that without a commitment to the nonideal, units on race and ethics would fail to illuminate the mechanisms by which racism operates. Without clearly understanding how medicine and clinical practice can be implicated in the maintenance of white supremacy, students run the risk of supporting it (e.g. by encouraging biological understandings of race or failing to understand how their own behaviors can negatively affect patients of color). Ethics education that focuses solely on the application of principles, moral ideals, or abstraction may miss important context and history needed to reason through ethically challenging cases and to determine the best courses of action in the clinic.

6.4  Mental Health Mental health is yet another important but frequently neglected topic in bioethics. Indeed, an often unavoidable aspect of clinical work in many areas of medicine is the assessment and treatment of mental disorders. Fortunately there has been a recent upsurge of interest in the attendant ethical issues (Sadler et al. 2015). But just  For discussion of the theoretical basis and empirical status of debiasing techniques, see Crosskerry et al. (2013a, b) and Brownstein (2019).

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as there is a need for expanded mental health literacy across the health sector, the ethical dimensions need to be better understood and incorporated more fully into ethics education. Here too questions concerning race and ethnicity are crucial. This is particularly important given the growing recognition of the social determinants of health and mental health, of which racism is a significant contributor (Paradies et al. 2015). Thus students receiving training in mental health should be instructed in the realities of social determinants more generally and institutional racism specifically, including medical students and residents in psychiatry (Hansen et al. 2018). In this section we focus on closely related issues concerning what are arguably the most ethically fraught aspects of mental health treatment: stigma and coercion. Indeed, few parts of the health sector are plagued by the degree of stigmatization that pervades the field of mental health. Psychiatry is also marked out from other areas of medicine by its use of a range of coercive measures, most notably legally mandated hospitalization but also interventions deployed on the ward such as forced medication, seclusion, and physical restraint. Both stigma and coercion are highly complex phenomena, subject to a great deal of conceptual and normative consternation. That said, there has been recent empirical work on these issues; we now know a lot more about how stigma and coercion actually function in mental health treatment. These findings represent a valuable resource, providing insight into the nonideal conditions encountered by mental health service users that should be incorporated into medical education and clinical training across the board.

6.4.1  Stigma Mental health is rife with stigma. Typically understood as the discrediting of certain groups due to undesirable or devalued characteristics, the distinction is commonly drawn between social stigma, which emanates from third parties, and self-stigma, which is internalized by the stigmatized (Corrigan 2016). Both apply with equal measure to the behaviors and experiences associated with mental disorders. Pervasive social stigma can lead to discrimination and other human rights violations against individuals with psychiatric diagnoses, or even against those exhibiting behaviors resembling the stereotypes of “madness” or “insanity” (Drew et al. 2011). There are also implications for help-seeking and access to health services, with self-­stigma associated with disinclination to pursue health information or clinical treatment (Schnyder et al. 2017), often termed label avoidance (Corrigan 2016). In addition, the experience of stigma can impact the very presence of disorder, acting as a social stressor, and thus partial social determinant, increasing the risk of developing acute symptoms, including psychosis and suicidal ideation (Rusch et al. 2015; Oexle et al. 2017). And so beyond the moral imperative to eliminate the stigmatization and mistreatment of those with mental disorders, there are also implications for service use and the development of effective interventions and responsive health systems. Now, it is true that social attitudes toward mental disorders have gradually shifted over time, in some positive ways. For example, surveys describe increased

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acceptance of mental health treatment (Angermeyer et al. 2017). But this research also underscores the complexity of stigma. The general public now tends to view mental disorders as the product of biological processes, but this is accompanied by attributions of dangerousness, unpredictability, and a desire for social distance. The perspective of mental health service users is also less than straightforward. In response to the negative connotations of biogenetic conceptions, anti-stigma initiatives have often promoted the idea that mental disorders are not dangerous diseases, preferring to frame them as normal reactions to stress and challenging social circumstances. But there is concern that this approach can give rise to another kind of stigma, driven by the question of why certain individuals are particularly vulnerable to social determinants. Mental health stigma may be “paradoxical” in this way: biogenetic models elicit fear but can also reduce attributions of responsibility for the resulting behaviors, while psychosocial models normalize but can also lead to increased accountability for flaws of character or unfavorable social circumstances (Gergel 2014). The more we know about stigma, then, the more complex it appears to be. This does not change the basic moral calculus, but it does suggest that health practitioners should be aware of the variable nature of the phenomenon, including the notion that self-stigma is likely to be highly subjective and particular to the individual in question. Compounding this call for more awareness is the recognition that practitioners, and practitioners-in-training, are themselves not immune to mental health stigma. Indeed, reports indicate high levels of both social stigma and self-stigma in medical students and practicing physicians (Stefanovics et al. 2016; Knaak et al. 2017). This is not only a potential problem for understanding the experiences of the service users they are treating, but also a barrier to seeking treatment for practitioners’ own struggles with mental disorders. Research describes high levels of burn-­ out, depression, anxiety, and suicide in medical students and physicians (Gold et al. 2013; Rotenstein et al. 2016). This suggests that entire health systems may benefit from anti-stigma initiatives, from service users to practitioners and on to health commissioners and policymakers, not to mention the broader society. What exactly should anti-stigma initiatives and teaching units look like? The field is still in the early stages of developing and testing such programs. For a start, the simple “educational fix” represented by many public campaigns and school curricula has been criticized for failing to have real, long-lasting impact (Corrigan 2018). In short, the basic transmission of facts surrounding stigma has not proven effective. What has appeared to work, across a number of studies, is direct personal contact with individuals with mental disorders (although the long-term impact remains unknown) (Thornicroft et al. 2016).12 Incorporating such social contact into the training of medical students is a good starting point, therefore, and notice that  Mental health stigma is a rapidly developing area of research, with a great deal of newly emerging evidence. For example, recent studies have shown that anti-stigma social marketing campaigns appear to increase the use of mental health services (Collins et al. 2019). In addition, anti-stigma initiatives for healthcare practitioners in low- and middle-income countries appear to benefit from strategies that emphasize social contact (Heim et al. 2020).

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this can be done without any commitment to overarching ethical principles or frameworks. The key point is to facilitate contact and personal familiarity with the challenges of living with a mental disorder, including the diminished social status that can come with receipt of a psychiatric diagnosis. Practitioners experiencing psychiatric symptoms could benefit from similar approaches, such as peer support groups involving the sharing of personal experiences.

6.4.2  Coercion The coercive practices of psychiatry have long stood out as ethically problematic. Indeed, as one area of medicine where dedicated legislation governs the hospitalization of patients against their will, it continues to be the subject of considerable debate. A powerful recent critique, for example, holds that mental health legislation is discriminatory in that it denies a specific group of people—those with a mental disorder—the right to refuse detention and/or treatment (depending on the jurisdiction) (Szmukler 2015). At the very least, the use of coercion demands moral scrutiny, even if in certain cases it is deemed permissible as a measure of last resort. Justificatory questions must remain at the forefront, and practitioners require training in how to handle these issues, both practically or clinically, and from an ethical standpoint. The most contentious matters concern legally mandated treatment, which typically involves involuntary hospitalization but also increasingly includes mandatory community treatment (Molodynski et al. 2016). The use of other techniques are also of moral concern, such as forced medication, seclusion, and physical restraint; more subtle forms of treatment pressure are also worth considering. All of these types of coercion should be included as key topics in medical education. The last few years have seen a marked increase of interest in coercion in mental health, and there is now a large literature that represents a valuable resource, regardless of one’s prior normative commitments (for reviews, see Kallert et al. 2011a; Molodynski et al. 2016; Cratsley 2019). Some of these findings are difficult to summarize given wide variations across health systems and jurisdictions, but the use of coercive measures is widespread. Comparative studies have confirmed relatively high rates of involuntary hospitalization, forced medication, restraint, and physical restraint, typically associated with specific patient characteristics, such as aggression, illness severity, and psychotic disorder (Kalisova et  al. 2014; Rains et  al. 2019). But reviews have also found that the use of these coercive measures is correlated with improved clinical outcomes for some inpatients, as well as a proportion of patients who retrospectively describe their initial hospitalization as justified and beneficial (Kallert et al. 2011b).13 These latter findings may provide some support for the idea that coercion is a necessary if imperfect tool for practitioners. But of

13  This does not hold for outpatients subject to community mandated treatment (Molodynski et al. 2016).

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course there are considerations that cut in the other direction, particularly the fact that a substantial number of involuntary psychiatric patients do not show significant clinical improvement and continue to strongly disagree with the nature of their treatment. In fact, much like stigma, the closer you look at the broader phenomenon of coercion, the more complicated things become. This is largely due to research on the subjective experiences of psychiatric patients, operationalized as perceived coercion or informal coercion, which has started to provide a more complete empirical picture (reviewed in Newton-Howes and Mullen 2011; Hotzy and Jaeger 2016). Drawing from this research, both involuntary and voluntary inpatients report a range of experiences that they characterize as unjustifiably coercive, and the data on clinical outcomes is not reassuring, with perceived coercion associated with treatment avoidance, lower treatment satisfaction, and less improvement of symptoms in voluntary patients. Many patients also report an absence of clear or fair processes (or procedural justice) over the course of their hospitalization, and voluntary patients who describe coercive experiences often point to a lack of participation in the admission process. This is not unrelated to the implicit threat of involuntary commitment reported by many voluntary patients (or the “coercive shadow”) (Szmukler 2015). In addition, perceptions of coercion have been linked to broader social norms, that can be felt as a kind of pressure, and negative views of therapeutic relationships with clinicians (Hotzy and Jaeger 2016).14 What these findings suggest is that the moral demands of psychiatric patients are often neglected, or ignored outright, and that much more should be done to address them through the education of healthcare professionals. In fact, there is research that reveals clinical staff have an insufficient understanding of coercion (Jaeger et  al. 2014), along with evidence that staff training can have a positive impact on the experiences of involuntary patients (Wykes et al. 2018). The trainings that appear effective are interdisciplinary, group-based exercises focused on clinical skills such as cognitive-behavioral interventions, strategies for dealing with stigma, and medication management. Other research has led to specific recommendations for reducing the use of coercive measures, including: providing clear and accessible information about the justification and duration of hospitalization; strengthening protections of patient rights; increasing family involvement and communication with the community; and improving staff training about aggressive patient behavior (Fiorillo et al. 2011). More broadly, medical education should also emphasize the increasing availability of advance statements (or advance directives) in psychiatry, which have the potential to reduce the need for involuntary hospitalization (de Jong et al. 2016).15

 When involuntary patients are asked which values they prioritize, they tend to mention the following: freedom of choice, personal safety, and respect from staff (Valenti et al. 2014). 15  More research is needed on advance statements and advance directives in psychiatry, especially given the challenges of implementation (Thornicroft and Henderson 2016). 14

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6.4.3  Applying Nonideal Theory Incorporating material on stigma and coercion into teaching units on mental health is consistent with a broader commitment to nonideal theory in several ways. For a start, it recognizes that abstract theory alone will not tell us what we need to know about the morally significant experiences of psychiatric patients. We need to know what is currently happening on the ground, and while there is clearly much we still do not know, especially concerning stigma, there is a growing literature to which we can now turn. What’s more, stigma and coercion are both contextually specific. Despite its seeming intractability, stigma is ultimately a socially contingent phenomenon, varying according to prevailing social and cultural norms. Tracking its permutations is key to combating it, given that it has been shown to be modifiable. Attitudes toward coercion are also variable, but it is important to note that psychiatry’s use of coercive measures has a very particular history, one that undoubtedly continues to resonate. For example, the misuse of psychiatry for political purposes is of longstanding—and ongoing—concern in many parts of the world (van Voren and Keukens 2015).16 And so while some uses of coercion may be justifiable, as the least restrictive measure of last resort, a fuller understanding of the use of coercive measures is necessary in order to combat unjustified and arbitrary detention and treatment.

6.5  Practical Implications We have argued that healthcare practitioners’ ethics education ought to embrace a commitment to the nonideal. Further, we have articulated two examples of what this approach might look like with regard to units on race and mental health. In this final section, we hope to briefly demonstrate how units that take up these suggestions can enhance students’ ability to recognize salient moral aspects of cases, and thus hopefully improve patient care. Recall the case introduced in Sect. 6.2. Following Fiester (2007), we suggested that ethics education fixated on a limited set of overarching principles can cause students to miss important moral considerations (viz. that the medical team neglected to acknowledge patient suffering and did not succeed at securing patient trust or confidence). We will next place this critique about bioethics education in conversation with our discussion of race and mental health; specifically, how an ethics education that embraces the nonideal can help uncover even more ethically salient features of this case. More generally, this analysis supports the idea that incorporating nonideal insights into ethics curricula can help practitioners achieve a more comprehensive understanding of the ethical issues they encounter.  This includes the use of involuntary psychiatric treatment to suppress political mobilization in African American communities (Metzl 2010).

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With regard to race, students well-versed in contemporary (and historically grounded) understandings of race, white supremacy, and racial healthcare disparities would be able to recognize the moral significance of a black patient not obtaining treatment after a clinical encounter. In this case, recognition of the racial disparities in HIV treatment can help practitioners more fully understand what’s at stake in this encounter and how it fits into historical, ethically significant patterns. For instance, Moore (1994) found “among patients infected with HIV, blacks were significantly less likely than whites to have received antiretroviral therapy or PCP prophylaxis when they were first referred to an HIV clinic” (763). More recent research continues to suggest that antiretroviral therapy initiation is longer for black patients than it is for white patients on average (Haines et  al. 2016). In the case introduced earlier, knowledge about racial health disparities could help clinicians interpret the patient’s mother’s insistence that he receive drug therapy not as a desire to come into conflict with the medical team but instead as perhaps rooted in a deep-­ seated fear that her son’s care will be compromised due to racial bias. This interpretation of the case has normative implications for how the team ought to approach a conversation with the mother and helps reframe the moral significance of their decision to hold off on treating him. Levine and Ambady (2013) discuss the fact that “African American patients are less likely than white patients to trust their doctors and to feel that their doctors listen to them” (868). This lack of trust, they posit, is related to non-verbal behaviors caused by racial stereotypes that imply clinician “disengagement” (e.g. “sitting further away, leaning forward less, averting one’s eyes, gesturing less, fidgeting, nodding less, having an open body posture, or exhibiting more facial rigidity, all of which may convey lack of attention or empathy toward a patient”) (Levine and Ambady 2013, 869). The act of viewing this patient as a “difficult case” could be related to racial stereotypes such as those about the intelligence of black people or beliefs about black patients and medical noncompliance (Sabin et al. 2008; van Ryn and Burke 2000). This fact is significant, since such labeling could affect clinician behavior, and perhaps nonverbal body language of the type discussed above which is associated with patient distrust. An analysis of this case with regard to race can thus help shed light on its moral complexities. Similarly, incorporating considerations about mental health in case-analysis can further illuminate moral aspects that might otherwise go overlooked. Given the power and reach of mental health stigma, it must always be considered as a potential factor in clinical interactions, especially in relation to help-seeking behaviors and the early stages of various pathways to care. There is also evidence that stigmatized attitudes vary significantly across cultures (Wong et al. 2017). In our case for discussion, there is a real possibility that negative associations about mental health inform the mother’s discomfort with her son’s diagnosis of depression and the recommendation of treatment. This would not be surprising given the level of distrust of healthcare professionals in the African American community. Similar dynamics could be compounded if the mother, and her son, perceived a degree of unwelcome pressure accompanying the treatment recommendation. Subtle forms of treatment pressure can be experienced as wrongfully coercive, as previously discussed; what’s

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more, reviews have found that members of ethnic minority groups are more likely to be involuntarily detained and treated under mental health legislation (Barnett et al. 2019). Even the possibility of receiving a psychiatric diagnosis and treatment, then, may have a chilling effect that can help explain a range of treatment adverse behaviors.17 In closing, we hope to have highlighted some of the concrete benefits of incorporating a nonideal perspective into bioethics education. In addition, we believe the discussion demonstrates the importance of race and mental health in bioethics education. An approach that is rooted in the empirical realities of oppression and injustice is necessary for producing clinicians who can understand the moral complexities of their work. While we argue that the approach we have outlined here is morally imperative, we also recognize that the implementation of this type of curriculum is no small task. In some ways, what we call for in this paper is a fundamental reorientation, or reimagining, of how bioethics is taught to clincians. We expect that some will find this call overly audacious or practically infeasible. And we agree that getting bioethics to become a critical project that incorporates the aspects of nonideal theory we have highlighted here will not be easy. That being said, we firmly believe that these changes are crucial for the development of healthcare that is ethically and morally sensistive to topics such as race and mental health. While resistence is inevitable, we suggest that skeptics recall the history of the field of bioethics. In the half century during which bioethics has emerged, it has not been an easy road. In fact, Stemmler (1989) has decribed inclusion of medical ethics into curricula as a “hard-won beachhead” and reflects on how “little by little the discipline was built” (704). In other words, the fact that there is now “broad consensus on the importance of teaching medical ethics” represents the work of resolute, steadfast pioneers in the field who persisted even when their views were unpopular (Carrese et al. 2015, 744). The fact that this type of leadership is still needed today to achieve the kind of shift we argue for here, while perhaps intimidating, does not represent a decisive objection to our thesis. What’s more, looking back at the history of bioethics helps highlight just how “young and flexible” the field is and that there is a great deal of potential to continue to improve the quality of ethics education for clinicians (Luna 2015, 129).18  There is also evidence suggesting that mental health practitioners’ perceptions of need for psychiatric treatment vary according to the race and ethnicity of patients (Breslau et al. 2017). 18  It’s worth noting that others have also signaled the need for a similar form of progress in bioethics education. Perhaps the initiative with the clearest affinities places emphasis on building “structural competency” in healthcare practitioners, with the goal of improving clinical medicine through increased recognition of—and action on—social and economic conditions (Metzl and Hansen 2014). This has included innovative work on pre-health curricula in universities (Metzl and Petty 2017), as well as proposals aimed at training physicians (Hansen and Metzl 2017). There have also been calls for a similar approach in medical schools, including the recent development of a teaching guide that uses case-based analysis of structural inequalities and health disparities (Krishnan et al. 2019). All of this is part of a broader shift to expand training on the social determinants of health. Given that this shift is already underway, it could be a natural entrypoint for the incorporation of nonideal theory into bioethics education. 17

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We encourage further research and conversation on how to reshape bioethics curricul a moving forward, as well as discussion of what the practical implications of our argument would be in terms of altering current institutional practices. At the very least, we hope to have convinced readers that a lot is at stake, morally and clinically, with regard to how bioethics education is taught to healthcare professionals. Acknowledgments  We would like to thank Autumn Fiester and the editors, Elizabeth Victor and Laura K. Guidry-Grimes, for helpful comments on earlier versions of this chapter.

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Part II

Applications in Bioethics

Chapter 7

Individual Moral Responsibility in the Anthropocene Madison Powers

7.1  Introduction to the Problem 7.1.1  Environmental Justice as a Complex Moral Problem Sarah is a conscientious environmentalist. She is an affluent, politically engaged, knowledgeable consumer, and her concerns are wide-ranging. She wants to make a difference in the real world, and she wants to avoid participation in injustice. She knows that large-scale human activities have degraded local and regional environments, and that the continuation of these activities, together with widespread reliance on fossil fuels, pose systemic threats to multiple Earth systems upon which all life depends (Steffen et al. 2015). Many scientists and historians now refer to the current period of Earth’s natural history as the Anthropocene. The label gets its name from the unprecedented extent to which human activity has an outsized, detrimental impact upon the rest of nature. However, Sarah also knows that the underlying issues of justice are easily masked by references to the Anthropocene. The reality is that we are not all in this together, in terms of cause or consequence. Not all humans are equally responsible for the environmental damages and environmentally-mediated harms that are occurring, and not all humans have borne, or will bear comparable burdens, now and over the course of the next century. For Sarah, the combination of localized environmental devastation, natural resource depletion, and existential threats to the planet is different from a tragedy or natural disaster analogous to the harm produced by a massive typhoon or an approaching asteroid. Instead, she understands that the current condition of the planet and the fate of its most harshly affected populations raise troubling M. Powers (*) Department of Philosophy and Kennedy Institute of Ethics, Georgetown University, Washington, DC, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 E. Victor, L. K. Guidry-Grimes (eds.), Applying Nonideal Theory to Bioethics, Philosophy and Medicine 139, https://doi.org/10.1007/978-3-030-72503-7_7

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questions of justice. Specifically, she is vividly aware that the activities that make possible a variety of benefits she enjoys come at the expense of those who shoulder the disproportionate burdens associated with every stage in the production of the material basis of modern life for the world’s most affluent persons  (World Bank 2005). She also knows that the harms to which her actions contribute generally accrue only as a consequence of the fact that billions of individuals engage in production and consumption activities that, taken in isolation, do not produce the relevant harmful effects. Two examples vividly illustrate Sarah’s concerns. First, the evolving system of large-scale agricultural production results in environmental burdens geographically concentrated among the poor, both within and across nations (FAO 2011). Industrial agriculture, which accounts for much of the affordable and securely available food for the global affluent, now resembles the typical pattern of extraction, production, and disposal of hazardous substances that is conducted largely in environmental sacrifice zones (Powers and Faden 2019, 188–206). These areas are so known because the burdens of environmental degradation tend to be clustered in poor and politically marginalized communities, far away from where most of the more affluent consumers live. The effects include air pollution, deforestation, destruction of watersheds and wetlands, concentrations of toxic wastes, biodiversity loss, hazardous runoff from mining, drilling, and chemically intensive agriculture. These effects on the natural environment have corresponding effects on the people who live there. They include environmentally-mediated ill health, lack of access to clean water, destruction of the basis for their livelihood, dispossession from their land, and long-term subordination to powerful political and economic entities that extract profit and leave behind a toll of environmental wreckage and human misery. These current burdens and long-term risks are well-documented. For example, by 2025, two-thirds of the world is expected to experience intermittent shortages that interfere with the ability of people to meet their daily needs, and the burden is falling most heavily on poor, hot, dry low and middle-income countries (UN-Water 2017). Agriculture looms large in this discussion. It accounts for approximately 70% of all freshwater withdrawals worldwide and 85% in less industrially developed nations (World Bank 2007). The rapid pace of groundwater depletion is especially worrisome, and it is mostly due to industrial agriculture, overgrazing, and the deforestation that accompanies population growth, and the expanded land footprint of agriculture (UNEP 2007). In addition, between 30% and 40% of the land under cultivation has become too degraded to support agriculture over the long term, and options for expanding the footprint of agriculture are limited by the fact that roughly 70% of the world’s arable land is currently used for some human activity, including agriculture (FAO 2015). The result is that the rate of topsoil depletion vastly exceeds the rate of replenishment in all regions of the world, but the equatorial regions bear disproportionate burdens (Pimentel 2006; FAO 2015; UNCCD 2017; IPBES 2018). The widespread but localized environmental harms due to the widespread overuse of fertilizers, pesticides, and herbicides in large-scale agricultural production are well-known (World Bank 2007). In addition, however, the extensive use of all

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synthetic chemical compounds over the last 70 years has fundamentally altered the planet through changes in the air, water, soil, and even the global nitrogen and potassium exchange systems (Steffen et al. 2015). The environmental footprints of meat are generally higher than for most plant-­ based foods. The production of grain for feeding livestock and poultry exacerbates problems of scarcity of water and arable land (Gerhardt et  al. 2019; Budolfson 2015). In addition, the biggest driver of biodiversity loss has been the increased production of food for a population that has doubled in less than 50 years, and since 1980, more than half of this increase has been at the expense of intact forests, especially due to increased consumption of meat, now accounting for 70% of agricultural production (IPBES 2019). Second, climate change and its associated harms add a further element of geographically disproportionate environmental impact and unjust distribution of its economic and health burdens. As a result of climate disruption caused by activities that increase the atmospheric concentration of greenhouse gases, overwhelmingly the poor will be hurt first and worst (IPCC 2018). On a global scale, many of the most severe consequences are expected to fall upon the hottest, driest, poorest tropical countries with economies that are heavily dependent upon small scale agriculture, most reliant upon rainwater for irrigation, most affected by drought and desertification, and least able to bear the costs of adaptation (IPCC 2014; Powers 2015). By and large, many of those who are being harmed severely, and perhaps irreparably, and who will continue to suffer the most, have benefited the least, and contributed relatively little to the problem of global warming. Moreover, poor communities within virtually every nation tend to suffer disproportionately. They generally reside on the least agriculturally productive land, as well as the physically most vulnerable terrain, routinely subject to floods, erosion, and geological instability. They also generally lack the essential services and infrastructure protections that can provide a hedge against natural disasters (UN-Habitat 2003; Powers 2016; Powers and Faden 2019, 220–223). Both examples involve harms produced by routine, uncoordinated activities of many people. Building a fire in a wood stove, taking a long flight to Copenhagen, clearing a patch in the forest for a garden, paving the driveway, taking a long hot shower, downloading a video from the internet, having a celebratory 7 course meal, storing food in non-degradable plastic containers, and going for an afternoon drive are not in themselves sufficient to cause grave harm to people or the planet. Nor do they seem to merit moral disapproval in the straightforward way that we often think of certain actions  – torture, for example  – as categorically wrong in themselves. Indeed, the activities resulting in  localized and planetary-scale harms are often undertaken for morally benign or even salutary purposes, but the cumulative negative effects and their concentration are becoming so well-known that the age of environmental innocence is coming to an end. Sarah also knows that the nature of the moral problems posed by climate change and many other examples of environmentally-mediated group harm are more complex than often described in discussions of group harm. They are often presented as problems that arise only when the effects reach some threshold or tipping point,

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colloquially elucidated in terms of small changes at a particular moment in time that can bring about large-scale, long-term catastrophic consequences (Gladwell 2000). However, this account is somewhat misleading with respect to most human-induced changes to the environment and their accompanying harms to human beings. Most environmental harms do not arise in a way analogous to the addition of a single drop of water causes a full glass to overflow. The better comparison is to the problems of congested highways. One more automobile on the road does not tip the balance, immediately converting an easily navigable thoroughfare into traffic gridlock. To be sure, at some point, the road can become impassible, but harmful consequences accrue gradually as travel becomes progressively more difficult. The highway continues to serve its function, only less adequately. Many environmental harms tend to accrue in the same manner. While some catastrophic environmental changes may be abrupt, or even irreversible, environmental degradation often sets in gradually, causing significant harm well before reaching a catastrophic tipping point. This description holds for harmful levels of greenhouse gas concentration and in cases of ordinary, localized effects of cutting down trees, consuming water, using and disposing of plastic products made from petrochemicals, and expanding the land footprint of the built environment, thereby pushing back the frontiers of wild nature. While human activities have significant environmentally mediated harmful effects on people and the planet when the types of activities are widespread, engaged in by many people, and repeated over extended periods of time, the accrual of harm usually does not wait until a catastrophic tipping point is reached or a discrete threshold is breached (Powers 2018b). The fact that “what we all do together” has consequences in the here and now, and not at some distant moment when a catastrophic tipping point is reached, adds to Sarah’s sense of urgency, not only for preventive action, but for the sake of gaining a better understanding of her own moral responsibility and the implications for a whole way of life.

7.1.2  M  oral Intuitions: Is the Idea of Individual Responsibility for Group Harm Quixotic? Even though Sarah knows that individuals acting alone are not the sole cause of harm to people or the planet, she wants to live up to her deepest values and she wants to make a difference in the real world. Even though she is uncertain just how much difference she might make by changes in her lifestyle, she believes that failure to let her daily activities be guided by the outcomes that she rightly values is morally condemnable. Sarah feels the moral tug of guilt, regret, or unease just from knowing that her individual actions contribute, often in very small ways, to avoidable, progressively evident, systemic patterns of environmental injustice. However, many philosophers think that Sarah and others like her have made a mistake. The skeptics agree with those who say that individuals have no individual

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moral duty or personal responsibility to change their behavior because, on reflection, they are correct when they conclude, “It makes no difference what I do.” The animating thought is that, absent some basis for thinking that a change in individual behavior will result in a reduction of aggregate harm, the ground for moral condemnation of individuals is elusive (Sinnott-Armstrong 2005). Literally, on this view, one might say “it’s not my fault,” given the fact that harm only accrues after enough people engage in the same – otherwise morally benign – activities. Skeptics of this sort do not necessarily deny the existence of any injustice. Nor do they all reject the idea of a need for assigning moral responsibility for prevention or remedy. The typical claim is that only collective responsibility is relevant in cases of group harm, and that the primary duty of individuals is to participate in and promote collective solutions (Cripps 2013). The search for a rationale by which we can assign and specify individual responsibility, by contrast, is likely to be misguided and perhaps counterproductive (Jamieson 2014). It might even seem that in Sarah’s case, the aspiration to make a difference is particularly quixotic. Unlike those who focus only on one issue, such as climate change or factory farms, the relevant outcome guiding Sarah’s actions is multi-­ dimensional and breathtaking in its scope. As Sarah well knows, a whole way of life for people like her seems to be implicated. The breadth of her concerns might appear to skeptics as further grounds for dismissing her intuitions that her personal choices raise profoundly troubling questions about individual moral responsibility. How could Sarah possibly make the kind of difference that she herself thinks of as morally called for? And if she cannot make such a difference, then is her own moral unease simply irrational? The task of this chapter is to make sense of Sarah’s moral intuitions. The first step is to situate Sarah’s moral discomfort within a context of philosophical debates about ideal and nonideal theory. The remainder of the chapter examines three leading strategies for understanding what, if anything, makes individual actions wrong or morally irresponsible, when such actions are neither necessary nor sufficient to cause harm. The first strategy for answering questions about individual moral responsibility involves the claim that in many instances our individual actions do make a morally important market difference. The argument explains how ordinary individual consumer choices in the marketplace can trigger a difference in corporate production decisions. The second strategy locates the relevant difference by pointing to the share of total harm that can be apportioned to each individual, for example, by one’s personal greenhouse gas emissions footprint. A third strategy focuses on the difference that individual conduct makes to the risk of harm, in particular, risks of harm generated through non-linear climate processes. Unfortunately, none of these strategies offer Sarah an explanation or validation of her moral intuitions. The alternative proposal developed in the final section explains the wrongness of certain individual actions in cases where actual or expected difference-making is unlikely, there is no sensible way to apportion an individual’s share of the total harm, and no individual’s action makes a clear difference to the risk imposed on others. This strategy focuses on the difference that individuals make in their moral

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relations with others, even if they have reason to expect that the actions guided by a desired outcome are unlikely to be successful.

7.2  Nonideal Theory Individual responsibility for injustices that arise as the cumulative consequence of the uncoordinated actions of many persons and institutions has been characterized as a problem of nonideal theory (Budolfson 2018). In part, that characterization is based upon objections to the use of a priori arguments within practical ethics, in contrast to arguments based on concrete empirical conditions in which market and political decisions are made. (See Sect. 7.3). The aim of this section is to say more about how the arguments in this chapter, including a principle of reciprocity defended in Sect. 7.5, figures within a mode of nonideal theorizing. The phrase entered the philosophical lexicon through the work of John Rawls. There is a huge literature on nonideal theory generally, as well as more specific disagreements on how Rawls conceptualized nonideal theory (Valentini 2012). I will elaborate on three points that seem to me central to the way Rawls most often employs the concept, not for the purpose of defending an interpretation of his theory, but simply because examining some of its key elements is useful for shedding light on the broader issues in theorizing about justice. I first distinguish between ideal endpoint principles and idealized assumptions about the social conditions in which these principles apply, and second, I distinguish two types of idealized social conditions, enduring empirical conditions and normative pre-conditions. I conclude this section by explaining my rationale for pursuing a particular approach to nonideal theorizing.

7.2.1  I deal Endpoint Principles and Idealized Social Conditions Rawls’s theory of justice is the paradigmatic example of ideal theorizing in contemporary moral and political philosophy. The central aspiration of his hypothetical contract model is to generate a set of principles of distributive justice that are ideal in the sense that they are deemed sufficient for the fair regulation of a scheme of social cooperation. Such principles represent the endpoint of philosophical reflection. Ideal endpoint principles are designed for the assessment of institutions. They are not intended to provide direct practical guidance for individuals under circumstances that Rawls calls conditions of partial compliance. However, defenders of ideal endpoint principles often argue that we must have a reasonably clear understanding of the ideal regulative principles we should strive to implement at the institutional level (Simmons 2010; Shelby 2004). For example, it is sometimes argued

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that endpoint principles are necessary to generate principles of transitional justice, or ones that identify necessary steps, improve compliance with ideal principles, or establish the practical priorities necessary in order to make the transition to a fully just social order (Williams et al. 2012; Sher 1997). In order for Rawls’s project to get off the ground, he needs a second type of idealization. He must specify the social circumstances that his endpoint principles are meant to regulate. Rawls calls this conception the “circumstances of justice.” However, we need to distinguish further two types of social conditions upon which his and similar theories depend. For simplicity, we can call these enduring empirical conditions and normative pre-conditions.

7.2.2  E  nduring Empirical Conditions and Normative Pre-conditions Enduring empirical conditions are ones that are assumed to remain in effect as part of the background in circumstances that generate the need for distributive principles in the first place. For example, Rawls imagines the permanence of conditions of moderate scarcity and limited altruism (Rawls 1999a, § 22). In other words, his aim is not to develop a theory of a just society, understood as a kind of post-scarcity paradise. Nor does he suppose that a fully just society will put an end to competition for scarce resources or usher in an era of pure altruism. Rawlsian ideal theory then, is not robustly utopian in the way orthodox Marxism is. There will always be a need to set social priorities, adjudicate among competing claims of self-interested parties, and distribute economic resources in ways that members of a society could be persuaded to accept as fair. In short, ideal theory is not necessarily equivalent to utopian theory. Normative pre-conditions, by contrast, are not background assumptions about the enduring circumstances that explain why some principles of distributive justice will be required. Rawls’s theory also draws upon assumptions about the social conditions that are normative pre-conditions for the application of his distributive principles. Rawls’s approach in this respect is not unique. Moral and political philosophers routinely rely upon deliberately counterfactual assumptions as a way of demarcating the domain of a principle’s application (O’Neill 1988). Two examples from Rawls’s theory illustrate this point. First, Rawls, in his later work, insists that his distributive principles only apply to societies that guarantee human rights that secure the satisfaction of basic needs (Rawls 1999b, 65, n. 1). He even construes this guarantee as a lexically ordered principle that takes priority over his other distributive principles (Rawls 1995, 7). To put matters slightly differently, his distributive principles are assumed to be applicable only in “favorable circumstances” (Rawls 1999a, 216; Rawls 2001, 4). Under favorable circumstances the basic needs of all are met, and thus, the residual normative problem is the distribution of an economic surplus among claimants, all of

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whom are above a moral threshold of well-being (Rawls 2001, 128–130, 139, 162). In response to critics who accused him of thinking that there are existing examples of such societies, including the United States, Rawls in various venues denied that current societies satisfy the “conditions of background justice” necessary for the application of his principles (Forrester 2019, 126). Second, a further normative pre-condition for application of his ideal endpoint principles is that the relevant societies are composed of free and equal citizens. Critics seize upon the fact that even societies that adhere most closely to some crucial norms of Rawlsian justice are marked by racism, sexism, and other hierarchical ideologies that contradict the free and equal citizenship premise. A powerful criticism is that this particular kind of idealization abstracts from and obscures social conditions that are among the morally most urgent to address (Mills 2005). Rawls replies that, while he recognizes that both of these pre-conditions are counterfactual assumptions for much of the world, their purpose is to bracket, not gloss over the existence of well-known problems such as racial discrimination and gross deficiencies in basic human needs. These two problems are set aside in order to focus on questions of fair economic distribution of an economic surplus, once problems of justice that Rawls himself classifies as “more pressing” have been addressed (Rawls 1999a, 8). The upshot is that his ideal theory – composed of what I call endpoint principles and normative pre-conditions – is not designed to address directly many kinds of concrete, real-world injustices that even he thinks of as morally more urgent, and for which the background conditions for application of his principles are not in place.

7.2.3  Some Shortcomings of Ideal Theory In other words, the consequence of employing these kinds of normative pre-­ conditions and focusing only on endpoint principles that kick in only when those pre-conditions are met, is that ideal theory is unable to offer immediate practical guidance for the world as we find it. It cannot address some of the centrally defining real world problems of extreme poverty, patriarchy, or the condition of most of the world’s population in the face of concentrated, unaccountable political and economic power. It only tells us what justice requires once these problems are safely behind us. Moreover, given Rawls’s narrow focus on inequalities in wealth and income it cannot assess the unfairness of differential patterns of environmental burdens, and more importantly, it cannot identify injustices in the underlying power relations that determine key decisions regarding resource extraction, production processes, and disposal of the wastes generated by modern societies. Nor can it shed light on the phenomenon of intersectionality, for example, instances in which racism, sexism, and economic disadvantage work together to compound and entrench deprivation or lock in mutually reinforcing patterns of subordination (Crenshaw 1991).

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I have not attempted to inventory or classify all of the idealized assumptions Rawls relies upon. There are others, for example, conceiving of societies as economically self-sufficient and self-contained, largely impervious to external economic and political influences on its distributive possibilities (Powers and Faden 2019, 109–111). However, the common thread running through all of my examples here is that questions about power in real world contexts – both market power and political power  – are not part of the account of the social conditions the theory brings to the forefront for moral scrutiny. Nonetheless, Rawls claims that the endpoint principles of ideal theory offer “the only basis for the systematic grasp of more pressing problems” (Rawls 1999a, 8; Cf Rawls 1999b, 90). Other theorists reach the same judgment (Simmons 2010). Their argument seems to rest on the idea that the proper task of nonideal theory is to generate transitional principles, or principles that depend heavily upon ideal principles to define the ultimate object or endpoint. However, my claim is that unjust forms of power and disadvantage embedded in systematic patterns of social organization can be identified without knowing in advance the full set of regulatory endpoint principles that would govern a fully just society. In fact, the ultimate justification of Rawls’s own endpoint principles of economic distribution depends on whether they are adequate for addressing independently identifiable forms of unjust power relations. At various points, Rawls appears to agree, for example, when he notes that an important purpose of his distributive principles is prevention of the emergence of unjust patterns of domination by politically and economically powerful social groups (Rawls 2001, 44, 130–31, 148). If these claims about the existence of independently identifiable forms of unjust power relations are correct, we can and should pursue a form of nonideal theorizing that can help us generate practically useful freestanding, mid-level principles (i.e., ones that are neither transitional nor endpoint principles) that proceed from and offer guidance for addressing empirical realities, in particular, unjust power that is exercised in markets and within political and other institutions. To be sure, the economic inequalities identified as unjust by Rawls’s endpoint principles routinely co-travel with unjust forms of power, but the point is that the injustice of those power asymmetries is neither reducible to the injustice of economic inequalities nor are they necessarily remedied by implementing Rawlsian principles of economic redistribution. Unjust power relations are normatively distinctive, pre-theoretically identifiable, but systematically ignored by his and many other forms of ideal theory. That said, my claim is not that the enhanced capacity for scrutiny of unjust power relations is the only virtue of nonideal theory. However, such a shift in practical focus is important enough to make it the centerpiece of a nonideal theory of environmental justice for two reasons. First, an important reason that many ordinary individuals like Sarah lack significant ability to make a difference to the way things go has to do with the way power is concentrated within political and economic institutions that increasingly span the globe. There is no effective way simply to opt out or to avoid the environmental impacts of what others do. They simply live in the grip of social forces largely controlled by others, and this is true of relatively privileged individuals like Sarah.

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Second, Sarah’s own lifestyle choices entangle her in morally problematic power relations that stand in need of the kind of scrutiny that ideal theories often cannot provide. She benefits from a system which systematically offloads environmental burdens and generates diminished life prospects for others, who, even more than Sarah, lack effective capacity to escape or avoid. Sarah is thus caught in the middle, constrained by powerful social forces, and yet party to and beneficiary of the power that she and others in her social position have over the occupants of less powerful social positions. Ideal theory suffers from its inability to reflect on Sarah’s responsibility in such circumstances.

7.3  Making a Market Difference 7.3.1  The Basis for Sarah’s Food Consumption Decisions Sarah does not want her choices to contribute to the very system of food production that makes a rich and diverse diet possible for her and has the potential for undermining the ability of others to meet their most basic needs. Given the large greenhouse gas contribution of meat, its substantial water footprint, and the additional land area required to raise livestock, she thinks that reduction of meat consumption is a good way to address a number of interrelated environmental concerns. Moreover, she is concerned about a range of widely reported environmental and economic consequences of large-scale chicken and beef production. Massive pollution of waterways, exploitative producer contracts, precarious employment arrangements, reduction of the local prevailing wage, and more deeply entrenched patterns of political disempowerment are among the many consequences of the geographic concentration of agricultural production facilities (Constance 2008; Powers 2018a). Although Sarah is concerned about inhumane treatment of animals, she does not reject eating meat on the grounds that it is wrong in itself. Accordingly, making a difference to the environment, the lives of people involved in the industry, or the organization of the global system of food production, must be central to her decision-­ making. Because her concerns about her actions are rooted in their consequences, her decision process is heavily dependent upon the way the world really is and what impact she can expect to have.

7.3.2  The Example of Factory-Farmed Chicken Will giving up factory-farmed chicken make a difference to the global food structure and the environmental consequences she hopes to avert? Quite a few philosophers argue that the individual decision to forgo chicken consumption is likely to make a morally relevant difference.

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Peter Singer, Shelly Kagan and others argue that one ought to do whichever available act has the greatest expected utility, or in other words, one ought to do what will have the best expected outcome (Singer 1980, 335–336; Kagan 2011, 124). Their argument, in a nutshell, is that it may be unlikely that Sarah will make a substantial difference, for example, if she forgoes the purchase of a factory farmed chicken (or vote in an election). Nonetheless, in such cases she ought to forgo the purchase (and vote) anyway because there is so much to be gained, even if the probability that her action might make a substantial difference is low, as long as her action does not involve significant inconvenience or loss to herself. The underlying assumption in both the voting example and the chicken purchasing example is that they are instances of a kind of collective action case that Julia Nefsky calls a triggering case. As she puts it “[so]me act triggers the relevant outcome: a threshold number n of acts of a certain type is needed for particular morally relevant outcome, and so when the nth act is performed, this triggers the change” (Nefsky 2011, 370). Voting seems to be a clear example of a triggering case. If there is much at stake, and Sarah’s vote just might break a tie, the expected utility of going to the polls on the long-shot chance that she will prevent some awful candidate from winning is reason enough to vote. Probabilities may be low, but in high magnitude cases, expected utility theory calculations provide an a priori reason to go vote. The expected utility argument assumes that chicken purchasing decisions are relevantly similar to voting cases. In Kagan’s version of the example, if a butcher orders crates, each containing 25 factory-farmed chickens, and he does not reorder until the 25th chicken is sold, Sarah should choose not to buy a chicken, even though it’s unlikely that her refraining from purchase would have been the 25th sale that would trigger the outcome she seeks. Kagan’s assumption is that there must be some threshold which determines how many factory farms are in operation, and that if consumers reduce demand below that threshold, the industry will go into decline. Thus, the right choice in every instance is to refuse to purchase a chicken. A consumer’s refusal just might keep the butcher from ordering another crate and thereby reduce the number of factory-farmed chickens produced and the bad consequences that accompany this mode of production. However, Nefsky argues that there is no empirically defensible reason to assume that a single triggering act is involved in the way butchers make their ordering decisions or reflects a realistic basis upon which producers respond to small changes in demand. Butchers might make their reordering decisions based on any number of considerations other than timing their actions to when the current stock is depleted. They may look to what competitors are doing, their advertised specials in progress, or statistics about past sales (Nefsky 2011, 370). In other words, there is simply no grounds for supposing that there are discrete events that trigger a difference in production outcomes analogous to the way that a single vote in fact can decide an election. One vote may be the triggering event that decides an evenly split election, but there are probably no similarly precise thresholds at which changes in any individual’s purchasing behavior is a tipping point in food production decisions. Nefsky offers the example of overfishing as a more realistic explanation of how environmental collective action problems typically work. There may be no sharp

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boundary between a fish population that has a healthy ability to replenish and a population that is in decline. It is unlikely that taking any single fish from the water can be identified as the tipping point that makes the difference. It’s more likely that when enough anglers begin to increase the size of their catch the population will go into gradual decline (Nefsky 2011, 377–78). All we know is that the worst-case harm will not materialize until there’s enough overfishing sufficient to undermine rates of replenishment. Moreover, there is no reason to suppose that tiny changes in consumer demand, even if such information does figure in the butcher’s decision whether or not to order another crate of chickens, affects upstream production decisions in the way the usual examples imagine. Mark Budolfson argues that we can and often do know enough about supply chains to know that production decisions don’t get made in the way the standard examples assume. The reality is that producers make production decisions that build in a buffer to accommodate slack in sales (Budolfson 2018). They know that they will often overproduce relative to demand, and so their pricing reflects the expectation of slack in demand. They know that some excess will simply be wasted, given away, or sold at deep discount to manufacturers of dog food. Because even quite substantial reductions in demand are unlikely to make a difference to their production decisions, there is virtually no chance that any consumer’s decision will make a difference. The reality of the marketplace is that production decisions are not as sensitive to changes in demand as the standard examples assume. Nefsky argues along similar lines. She sought information about the size of the buffer in the chicken industry to determine whether an individual’s action is likely to make a production difference. An executive of one of the world’s largest chicken production companies explained that even a 5% decrease in demand would make no difference to their business model (Nefsky 2018). The upshot is this: if Sarah thinks that her moral responsibility is grounded solely in her desire to make a difference to the outcome, then she has to rely upon realistic considerations of expected utility. She cannot follow the advice of those who simply assume, contrary to available empirical evidence, the existence of discrete triggering events as a basis for determining what she should do. Considering whether and how consumers might make a market difference depends upon a real world understanding of how markets work.

7.4  Making a Climate Difference 7.4.1  How Climate Harms Are Produced Climate scientists emphasize the importance of limiting the atmospheric stock of greenhouse gas emissions to 450 parts per million (ppm). This emissions target must be met in order to limit the rise in global temperature of 2 degrees Celsius (or better still, 350 ppm for an estimated 1.5 degrees) above a pre-industrial baseline in

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order to avoid catastrophic, potentially irreversible climate-related harms (IPCC 2018). However, climate harms are occurring now, and they are increasing as atmospheric stocks continue to climb. An upward movement will lead to more climate disruption, more droughts in dry places, more rainfall in wet places, more deaths, higher prevalence of tropical disease, more dislocation of people, and so on (WHO 2003). Does Sarah have a moral obligation or responsibility to refrain from going for a long leisurely afternoon drive in a gas guzzling SUV? The standard answer is that she does not. The conclusion is premised on the assumption that her action does not cause global warming, disruptive climate changes, or their related harms (Sinnott-­ Armstrong 2005, 299). The argument has two parts. The primary argument rests on the claim that an individual’s act is neither necessary nor sufficient for any discrete climate harm to occur. A secondary argument is that there is no reason to single out the emissions from an individual’s leisure drive as an especially morally salient cause of climate harms (Kingston and Sinnott-Armstrong 2018). I’ll postpone discussion of the salience argument and focus on the first line of argument. The thrust of that argument is that the emissions from an afternoon drive are too small to make a difference to global warming or to alter the extent of harms due to climate disruption. More specifically, small additions to the total stock of greenhouse gases, on their own, cause no additional, identifiable harm. Harm only occurs as a result of the aggregate, uncoordinated contributions of billions of people around the world over many years. Climate disruption is assumed to be an example of a kind of moral problem that Derek Parfit describes when he speaks of harm produced by “what we all do together” (Parfit 1984, 70). These are cases in which it often seems that the harm that results from what each individual does cannot be disaggregated, such that the precise quantum of moral responsibility for the harm that can be attributable to each person can be calculated. Sarah’s leisure drive causes no more deaths, no loss of arable land, no flooding, no heat waves, and no other discrete harmful effects. Thus, it is difficult to see how Sarah wrongs anyone, or that she has any moral responsibility to abstain from her leisure drive.

7.4.2  The “Share of the Total” View Parfit offers an influential suggestion for how we should think of individual moral responsibility in cases of group harm. He defends what he calls the “share of the total harm view.” We can calculate the total harm done by what we do together and divide it by the contribution of each individual. In climate change cases, if can we calculate the total harms due to climate change, then we can estimate the individual’s contribution. For example, on some estimates as many as 300,000 deaths annually can be attributed to the accumulated stocks greenhouse gases (Cullity 2019, 24–25). Using the 300,000 deaths per year estimate, the average individual share of deaths for which each person is responsible can be calculated. Alternatively, we

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could follow John Broome’s proposal to use social cost of carbon calculations as the metric of harm (Broome 2019, 111). By one estimate, for example, the average academic would be responsible for $40,000 of social cost imposed upon others over a lifetime. However, the share of the total harm view faces two objections when applied to cases of contribution to climate disruption. First, it’s implausible to apportion moral responsibility to individuals based on average per capita emissions. If we assume that the purpose of such calculations is to make an appropriate, fine-grained discrimination among differentially culpable agents, then attribution of moral responsibility based on averages misses the mark. Knowing the average per capita emission tells us nothing about what Sarah should do. At minimum, we want to know about differences between the contributions of large and small emitters. Second, even if we have the relevant information about proportionate contributions of emitters, assignment of moral responsibility should not proceed on the assumption that all emissions are on a moral par. Some emissions are for benign, worthwhile, or even noble purposes, while others are frivolous, trivial, or dishonorable. Henry Shue’s distinction between luxury and subsistence emissions brings home the point that moral responsibility is as much a function of the social value or disvalue of those emissions as their quantity (Shue 1993). Imagine two high-­ emitting billionaires. One travels the world in his private jet to attend every rock concert performed by his favorite band. A second billionaire travels around the world promoting the necessity of political action to fight climate change. Their causal contributions may be comparable in size, but that fact tells us nothing about the moral comparability of their actions or their responsibility.

7.4.3  Risking and Wronging Another way of understanding what makes an action wrong even when it does not result in actual harm – or an attributed share of total harm – is the risk it imposes on others. The rough idea behind a plausible account of wrongful instances of risk imposition is that an agent’s conduct exposes others to an impermissibly high probability of significant harm. The probability that qualifies as impermissibly high and the magnitude of harms that count as significant are open to disagreement, but most people would agree that it is wrong to create an avoidable risk of grave harm to life or health of others simply to secure a slightly better life for ourselves. For example, an automobile driver speeding through a residential neighborhood just to get to the supermarket a few minutes faster wrongs the people it endangers, even if no is injured (Kumar 2018). The attraction of a conception of wrongful risking is that it preserves the action-­ guiding role for an agent’s concern about avoiding a bad outcome without having to appeal to the existence of an actual bad outcome as the explanation of an action’s wrongness. It allows us to conclude that certain types of actions, in well-defined circumstances, are wrong because of their unacceptable risk profile.

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What about the application of a risk-based approach to the relevant difference that matters in the climate change context? John Broome and Holly Lawford-Smith defend versions of such an approach. Lawford-Smith concludes that “individuals have duties not to perform the actions that can be reasonably be expected to cause certain kinds of harms.” (Lawford-Smith 2016, 76). Broome says that emissions may or may not do harm, but they certainly increase the expectation of harm (Broome 2019, 110). What about our SUV drive? In the normal course of things, the harm that is expected for an afternoon drive is probably near zero. Even a whole lifetime of extravagant living may not produce much added risk of harm. Even an afternoon of emissions from a highly inefficient coal powered electrical plant might add only trivially to the risk of climate harms produced by the gradual rise in levels of atmospheric greenhouse gas stocks. To the extent that we think about climate harms as a function of continuous linear processes, most incremental contributions by individuals are described accurately as doing no harm or magnifying the expectation of harm.

7.4.4  Triggering Non-linear Climate Risks One argument is that we need to look beyond these scenarios involving a gradual rise in greenhouse gases. There are non-linear climate system processes that also are important for understanding whether an individual’s episodic emissions create an unacceptable risk. For example, it is possible that climate processes involve a series of steps, or natural thresholds, marking the point at which a new storm is triggered or a storm is made more destructive (Lawford-Smith 2016, 67–71, 75–76). Alternatively, because of the chaotic nature of the climate system even very small upward changes in total emissions (an instance of the butterfly effect) could produce large-scale differences in weather patterns (Broome 2019). The probability that an isolated individual’s action would trigger these kinds of effects is a matter of deep uncertainty, as both Lawford-Smith and Broome acknowledge (Lawford-Smith 2016, 68–76; Broome 2019, 117). However, Broome’s conclusion is that we have moral reasons to forgo emissions because the consequences of doing otherwise would be dire (Broome 2019, 119). Once again, we have an example where expected utility calculations are at work, but even if there are discrete triggering events of the sort that are absent in the chicken purchase example, the new problem with this kind of argument is that it does not help us decide which among all the small emissions activities we should forego. Presumably, if we place the weight of the calculus on the magnitude of low probability, non-linear harm, we should not do anything that produces a net increase in emissions. How might we avoid the lack of any standard for discriminating among risky activities? Broome’s argument builds on an analogy to the responsibility of cruise ships to carry life boats. The likelihood of needing the lifeboats is very small, but the magnitude of expected harm is so great that there’s a morally weighty reason to

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take the precautionary steps to include them (Broome 2019, 119). However, this analogy is not helpful. The comparison between shipping risks and risks of non-­ linear climate change risks conceals much that is normatively different between the two cases. In the lifeboat case we have relevant information necessary to make moral judgments regarding acceptable risk. The probability of shipping accidents is readily quantifiable, the mechanism of harm production is well-understood, and the means and costs of risk reduction are known. Climate risks due to non-linear natural processes are not at all similar to these cases. The radical uncertainty in our understanding of the mechanisms of climate harm production, and hence the absence of relevant information about means and costs of prevention, undermines our ability to make risk assessments of the sort made by the shipping industry. Two further issues of deep uncertainty pertaining to the causal mechanisms reveal further problems with arguments that rest on the highly speculative link between an individual’s emissions and the harm of non-linear processes (Winsberg et al. 2019). The first issue is the difficulty in attributing the increases in number or severity of certain event types, such as increased rainfall, storms, tornadoes, hurricanes, and so on to climate change. As it turns out, even attribution of event types to climate change processes  – much less an individual’s emissions  – is not that straightforward. For example, scientists have relatively low confidence in detecting a link between tornadic activity and climate change. By contrast there is more confidence in the causal link between climate change and heavy rainfall events and extreme heat (National Academies 2016). The second issue has to do with attribution of singular events to climate change. The issue is whether this particular storm is attributable to climate change. Whether a singular weather event, such as Hurricane Harvey in 2017, was made more destructive by climate change due to higher ocean heat, or attributable primarily to other factors such as La Niña, is even more difficult to determine (Hayhoe et al. 2018). Consequently, attribution of non-linear climate harms to individual activities is two steps removed from what climate attribution theory is currently able to accomplish. If we don’t have great confidence in attributing certain types of weather events to climate change itself, and we have even less confidence in attributing singular events of each type to climate change processes, we are missing the sort of information usually seen as central to judgments of when we have moral responsibility to take steps to manage risk.

7.4.5  Salience and Unacceptable Risk The discussion of risk takes us to the second version of the argument developed by Kingston and Sinnott-Armstrong. Determining whether risk of harm creates moral responsibility to avert it always goes beyond the mere recognition of a potential causal link to a harmful outcome or risk of harm. Suppose that a leisure drive does

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increase risk of a non-linear effect. Added risk alone, even risks involving high magnitude harms, settles nothing morally. Judgments of acceptable risk turn on the identification of salient causes. When there are multiple causal factors at work, it is a commonplace observation in both legal and moral theory that we need some way to discriminate among the causal contributions in order to decide which ones warrant assignment of responsibility (Hart and Honoré 1985). Even in relatively simple cases, like the example of a speeding motorist, there are multiple causally implicated agents, and for the purposes of assigning blame, liability, or some preventative responsibility we necessarily must pick and choose among them. As Annette Baier has argued, we always have to decide which harms and risks of harms to notice as the morally salient ones meriting condemnation, regulation, or assignment of a duty to protect against (Baier 1986, 49). To be sure, the notion of salience is difficult to pin down, but a number of factors have been suggested as relevant. Some impositions of risk are consented to, or they are so trivial in nature that we are entitled to ignore them, while other risk impositions, although considerable, are justified because the expected benefits outweigh the expected harms. Among leading proposals are suggestions that primary causal responsibility be assigned to agents who can avert a risk at least cost (Wenar 2007). Often, we make such judgments by examining the typical circumstances of occupants of certain roles, such as automobile operators, train conductors, gun shop owners, or handlers of explosives. Our concern is trained on assessment of those in the best position to take preventative action. Judgments about the relative financial or cognitive burdens of attending to the potential for harm also figure in the identification of the agents best positioned to prevent an unwanted outcome. Within moral theory, sometimes the point about salience is put in terms of the background contributors we classify as spurious causes, for example, ones that make a negligible difference to the outcome, or causal contributions that are thought too small to count, or ones that merit condemnation because they are unusual, rare, abnormal, or out of the ordinary scheme of things, unreasonable, and so on (Lewis 1973; Lewis 2000). Whatever definition of spurious causes we use, the lesson is that for all normative judgments of causality, where the aim is to assign blame or liability for harms, or allocate responsibility prospectively for risk management, it is never a simple matter of getting some causal story straight. Quite often, there are no natural places to draw the line based on what is too small, too rare, too remote, or too improbable to count, or conduct that is so unusual or so unexpected that responsibility should attach (Gunnemyr 2019). Even very unlikely outcomes can be deemed causally relevant for normative purposes as long as we have sufficient reasons to place the socially assigned responsibility on the occupants of some role. In the climate change case, there are no clear, ready-made answers. We might argue for focusing on environmentally clueless leisure drivers, owners of coal-fired power generation facilities, industry executives who hide or deny their knowledge of the science behind climate change, individuals who embrace high emissions lifestyles, or some other category by which we identify morally salient contributors.

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Perhaps no single criterion captures the one concern that is normatively most salient in all circumstances, but the mere presence of a causal link between an agent’s activities and harmful outcomes or the imposition risk of harm is never sufficient for normative purposes. However, as a general rule, we look to states of mind, for example, in legal theory where judgments about the violation of a duty of due care, or reckless disregard or indifference to the well-being of others is at issue. Because all of our daily activities causally contribute to harms, we often take special note of the presence of ill will or culpable indifference to the welfare of others, and as the harmful effects of certain kinds of activities become common knowledge we update our assessment of even the most routine, previously accepted activities (Baier 1986, 64).

7.5  Making a Relational Difference 7.5.1  Moral Indifference and Business as Usual Perhaps the growing numbers of individuals like Sarah who sense that something is morally amiss about actions of relatively trivial importance such as getting the nth new pair of jeans, buying fresh fruit year around, or shopping for the latest fad in exotic imported grains shows that we are on the cusp of just this sort of update. For many people, it becomes psychologically more difficult to go about business as usual when so much becomes known about how the routine activities of the global affluent predictably result in massive environmental degradation and environmentally mediated harms to others who cannot avoid the fallout from affluent lifestyles. Participation in a way of life that is not universally sustainable, or continuing with business as usual manifests a troubling degree of indifference to the expected, life-­ altering outcomes for much, if not all of humanity, especially when the activities of a relatively privileged 20% of the world’s population are undertaken for the sake of convenience or hedonic satisfaction.

7.5.2  Reciprocity How should we understand what is wrong about the knowing participation of the global affluent in practices that they have reason to know systematically benefit them at the expense of those who lack sufficient offsetting power to demand a fairer distribution of benefits and burdens? My hypothesis is what is troubling about a business-as-usual approach in morally unprecedented times is that what was once appropriately viewed as unobjectionable conduct is now better seen as a violation of a more basic, pre-theoretically identifiable principle of reciprocity. Because there

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are a number of variations in the ways that reciprocity has been conceptualized within many diverse ethical traditions, we need to narrow the focus. John Rawls, for example, proposes that any principles of just social interaction must satisfy a more basic moral standard which he calls “criterion of reciprocity” (Rawls 1999b, 14, 35). Rawls, of course, defends the controversial substantive claim that his own domain-specific principles proposed for domestic and global arenas satisfy the reciprocity criterion, but that debate is not our topic. A commitment to reciprocity sometimes figures in the explication of contractualist moral theories, but the idea of reciprocity has been invoked by theories as diverse as Aristotle in both his Politics and Nicomachean ethics, and more recently, it has been defended by moral and political theorists as a freestanding or generic moral norm that any credible moral tradition has reason to endorse. Reciprocity, in this generic sense, is best understood as a particular kind of moral posture toward others, a commitment to stand in relation to others in a way that embodies a mutual recognition of others as moral equals, as persons who have weighty interests on a moral par with one’s own, and for whom harm or risk to their most vital interests stand in need of a compelling justification. Ranier Forst, for example, argues that reciprocity merely requires “that none of the parties concerned may claim certain rights and privileges it denies to others” (Forst 2001, 177). In a similar vein, Richard Miller uses the phrase “reciprocity of reasons” to indicate a willingness to interact with others as moral equals by “backing their own proposals with morally relevant reasons and giving weight, in proportion to seriousness, to relevantly similar reasons offered by others” (Miller 2010, 72). While neither explication of what is involved in the moral posture of an agent committed to reciprocity provides a substantive account of the rights and privileges that none may claim, while also denying their applicability to others, both formulations make clear that there are some minimum reciprocal demands of justice owed to moral equals, and that these demands set limits on permissible activities affecting the morally most weighty interests of others who have no feasible pathway to avoid the harmful consequences. Reciprocity, understood generically as a regulative principle for relations among moral equals, does not entail any specific set of endpoint principles that satisfy its normative requirements. It does not depend on counterfactual normative preconditions that define the scope of application of such principles, for example, limiting its scope to societies that fulfil certain lexically ordered human rights requirements. It does not depend on idealized assumptions about what others do, as theories of partial compliance often suppose. It does not depend on contractualist arguments about the moral principles that others who are affected by one’s activities have sufficient reason to accept (or could not reasonably reject). Instead, the reciprocity principle proposed here stops short of an effort to identify specific endpoint principles that parties to a hypothetical contract would endorse as constituents of an ideal of just social relations. It functions merely as a normative screen, ruling out certain kinds of power relationships that involve the imposition of seriously one-sided terms of interaction upon the less powerful, who are in the grip of others who have the power to lead their lives without being held accountable for the consequences of their

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actions. In other words, the role of a principle of reciprocity within a nonideal theoretical approach is to identify patterns of interaction that are clearly unjust. Ideal theories, by contrast, seek to identify the constituent principles of a fully just scheme of social relations. To make the point more concrete, what a commitment to a principle of reciprocity rules out are patterns of interaction in which the morally non-negotiable human interests of less powerful individuals are placed at risk for the sake of considerably less weighty interests at stake in the lifestyles of the global affluent. For example, no one should acquiesce in the sacrifice of the vital interests that ground their basic human rights as a result of their participation in such interactions, and no one should demand that kind of sacrifice from other, less powerful individuals simply to preserve a vastly higher standard of living for themselves (Powers 2020, 46–47, 53; Powers and Faden 2019, 167–177). Physical loss of land due to sea level rise, loss of arable land necessary for food production, and loss of life from increased prevalence of tropical disease are examples of the morally non-negotiable interests that might be at stake. Indifference to the kinds of outcomes that no one within the globally affluent classes would tolerate as a by-product of the discretionary lifestyles of others is a surefire marker of a grave deficiency of moral responsibility. As the harmful effects of high emissions and other environmentally destructive activities become common knowledge, we must (as Baier suggests) update our assessment of the acceptability of the risks imposed by many of our routine, widely accepted activities and recognize them as dishonorable. Our moral vocabulary is beginning to show early signs of this sort of updating, for example, in the increasingly popular idea that we should have a sense of moral shame for carbon-intensive, discretionary airline flights. The earliest and best-­ known word for “flight shame” is the Swedish ‘flygskam’, but the Finnish have coined the term ‘lentohapea,’ the Dutch speak of ‘vliegschaamte,’ and the German equivalent is ‘flugscham.’ These are hopeful signs, but it is important to acknowledge that moral updates on matters of individual responsibility do not happen easily, and in recent times, many philosophers have been especially reluctant to abandon what Katrina Forrester describes as a “deflationary view of responsibility” for individuals, even in times of social crisis and turmoil (Forrester 2019). She traces that professional reluctance in her survey of how liberal egalitarian philosophers took an “institutional turn” in moral and political theory. In the 1960s and 1970s liberal egalitarian philosophers in the United States turned their attention to the development of new theoretical tools for evaluating the moral responsibility of institutions for large-scale structural injustices, such as the Viet Nam war and racialized patterns of durable poverty and police violence. At the same time, however, many of the prominent theorists of institutional responsibility adopted the deflationary view, largely because they agonized over “how much people could be held responsible for their choices when they might not control the circumstances of those choices…” (Forrester 2019, 91). The deflationary view is part and parcel of the division of moral labor presupposed by ideal theories that rely upon endpoint principles to assess institutions.

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Such theories assume that institutions that have direct responsibility for addressing structural injustices, and that individuals have different responsibilities, narrowly conceived as a duty to support and work for the creation of just institutions. This division of moral labor proceeds from the premise that only institutions have stringent and clearly delineated duties of justice in cases where the moral problems arise from “what we all do together” because only institutions can make the relevant difference to the desired outcome. As a result of the institutional turn, with ideal endpoint principles as its centerpiece, questions about the moral entanglement of individuals in non-reciprocal relations of power are largely sidelined. Inquiry about the moral responsibility of individual and non-state agents who create, sustain, or benefit from unjust institutional arrangements is blocked by a moral division of labor that recognizes only an undifferentiated duty of individuals to create and support just institutions. This division of moral labor is plausible only on the assumptions that no individual is in a position to make a significant difference to the outcome, and that only institutionally-­ mediated outcomes, not underlying power relationships through which the outcomes are produced, are the proper concerns of social justice. The underlying assumptions in this chapter, by contrast, are that institutional change itself is dependent on individuals taking responsibility for their environmentally destructive activities, and that a heightened level of individual responsibility for some individuals is based on the fact their activities are possible because of the asymmetric power they have over people and the planet. Were Sarah and other conscientious environmentalists to learn that their actions will make no likely difference to the outcome, or no salient difference to the risk of a bad outcome, they would continue to try to find ways to reduce their carbon and water footprints, withdraw support from agricultural practices that involve heedless environmental degradation, labor exploitation, and other harms, and take other personal steps to opt out of practices that in the aggregate pose grave threats to people and the planet. They would be justified in doing so, and they would be justified in thinking that individuals in superior positions of power have even greater responsibility to update their assessments of the acceptability of many routine, widely accepted activities and begin to recognize them as dishonorable.

References Baier, Annette. 1986. Poisoning the wells. In Values at risk, ed. Douglas MacLean, 49–74. Totowa: Rowman and Allanheld. Broome, John. 2019. Against denialism. The Monist 102 (1): 110–129. https://doi.org/10.1093/ monist/ony024. Budolfson, Mark. 2015. Consumer ethics, harm footprints, and the empirical dimension of food choices. In Philosophy comes to dinner, ed. Andrew Chignell, Terence Cuneo, and Matthew Halteman, 163–181. New York: Routledge. ———. 2018. The inefficacy objection to consequentialism and the problem with the expected consequence response. Philosophical Studies. https://doi.org/10.1007/s11098-­018-­1087-­6.

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Constance, Douglas H. 2008. The southern model of broiler production and its global implications. Culture and Agriculture 30 (1): 17–31. Crenshaw, Kimberlé. 1991. Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review 43 (6): 1241–1299. https://doi. org/10.2307/1229039. Cripps, Elizabeth. 2013. Climate change and the individual agent. Oxford: Oxford University Press. Cullity, Garrett. 2019. Climate harms. The Monist 102: 22–41. https://doi.org/10.1093/ monist/ony020. FAO. 2011. The state of the world’s land and water resources for food and agriculture. Abingdon/ New York: Earthscan and FAO. http://www.fao.org/3/a-­i1688e.pdf. ———. 2015. The status of the world’s soil resources. Rome: FAO. http://www.fao.org/documents/ card/en/c/c6814873-­efc3-­41db-­b7d3-­2081a10ede50/. Forrester, Katrina. 2019. In the shadow of justice: Postwar liberalism and the remaking of political philosophy. Princeton: Princeton University Press. Forst, Ranier. 2001. Towards a critical theory of transnational justice. In Global justice, ed. Thomas Pogge, 169–187. Oxford: Blackwell. Gerhardt, Carsten, Gerrit Suhlmann, Fabio Ziemßen, Dave Donnan, Mirko Warshun, and Hans-Jochen Kühnle. 2019. How will cultured meat and meat alternatives disrupt the agricultural and food industry? https://www.atkearney.com/retail/article/?/a/ how-­will-­cultured-­meat-­and-­meat-­alternatives-­disrupt-­the-­agricultural-­and-­food-­industry. Gladwell, Malcom. 2000. The tipping point: How little things can make a big difference. New York: Little Brown. Gunnemyr, Mattias. 2019. Causing global warming. Ethical Theory and Moral Practice 22: 399–424. https://doi.org/10.1007/s10677-­019-­09990-­w. Hart, H.L.A., and Tony Honoré. 1985. Causation in the law. 2nd ed. Oxford: Clarendon Press. Hayhoe, K., D.J.  Wuebbles, D.R.  Easterling, D.W.  Fahey, S.  Doherty, J.  Kossin, W.  Sweet, R. Vose, and M. Wehner. 2018. Our changing climate. In Impacts, risks, and adaptation in the United States: Fourth national climate assessment, volume II, ed. D.R. Reidmiller, C.W. Avery, D.R.  Easterling, K.E.  Kunkel, K.L.M.  Lewis, T.K.  Maycock, and B.C.  Stewart, 72–144. Washington, DC: U.S. Global Change Research Program. https://doi.org/10.7930/NCA4.2018. IPBES. 2018 The IPBES assessment report on land degradation and restoration, ed. Luca Montanarella, Robert Scholes, and Anastasia Brainich A.  Bonn: Secretariat of the Intergovernmental Science-Policy Platform on Biodiversityand Ecosystem Services. https:// www.ipbes.net/system/tdf/2018_ldr_full_report_book_v4_pages.pdf?file=1&type=node &id=29395. ———. 2019. Summary for policymakers. In The global assessment report on biodiversity and ecosystem services of the Intergovernmental Science-Policy Platform on Biodiversity and Ecosystem Services, draft report. Bonn: Secretariat of the Intergovernmental Science-Policy Platform on Biodiversity and Ecosystem Services. IPCC. 2014. Summary for policymakers. In Climate change 2014: Impacts, adaptation, and vulnerability. https://www.ipcc.ch/pdf/assessment-­report/ar5/wg2/ar5_wgII_spm_en.pdf. ———. 2018. Summary for policymakers. In Global warming of 1.5 °C. An IPCC special report on the impacts of global warming of 1.5  °C above pre-industrial levels and related global greenhouse gas emission pathways, in the context of strengthening the global response to the threat of climate change, sustainable development, and efforts to eradicate poverty. Geneva: World Meteorological Organization. Jamieson, Dale. 2014. Reason in a dark time: Why the struggle against climate change failed – And what it means for our future. New York: Oxford University Press. Kagan, Shelly. 2011. Do I make a difference? Philosophy and Public Affairs 39 (2): 105–141. https://doi.org/10.1111/j.1088-­4963.2011.01203.x. Kingston, Ewan, and Walter Sinnott-Armstrong. 2018. What’s wrong with joyguzzling? Ethical Theory and Moral Practice 21 (1): 169–186. https://doi.org/10.1007/s10677-­017-­9859-­1.

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Kumar, Rahul. 2018. Risking future generations. Ethical Theory and Moral Practice 21 (1): 245–257. https://doi.org/10.1007/s10677-­018-­9880-­z. Lawford-Smith, Holly. 2016. Difference-making and individuals’ climate-related obligations. In Climate justice in a non-ideal world, ed. Clare Hayward and Dominic Roser, 64–82. Oxford: Oxford University Press. https://doi.org/10.1093/acprof:oso/9780198744047.003.0004. Lewis, David. 1973. Causation. Journal of Philosophy 70: 556–567. ———. 2000. Causation as influence. Journal of Philosophy 97: 182–197. Miller, Richard. 2010. Globalizing justice: The ethics of poverty and power. Oxford: Oxford University Press. Mills, Charles. 2005. “Ideal theory” as ideology. Hypatia 20 (3): 165–184. National Academies of Sciences, Engineering, and Medicine. 2016. Attribution of extreme weather events in the context of climate change. Washington, DC: The National Academies Press. https://doi.org/10.17226/21852. Nefsky, Julia. 2011. Consequentialism and the problem of collective harm: A reply to Kagan. Philosophy and Public Affairs 39: 364–395. https://doi.org/10.1111/j.1088-­4963.2012.01209. ———. 2018. Consumer choice and collective impact. In The Oxford handbook of food ethics, ed. Anne Barnhill, Mark Budolfson, and Tyler Doggett, 267–286. New  York: Oxford University Press. O’Neill, Onora. 1988. Abstraction, idealization, and ideology in ethics. In Moral philosophy and contemporary problems, ed. J.D.G. Evans, 55–69. Cambridge: Cambridge University Press. Parfit, Derek. 1984. Reasons and persons. Oxford: Clarendon Press. Pimentel, David. 2006. Soil erosion: A food and environmental threat. Journal of the Environment, Development and Sustainability 8: 119–137. Powers, Madison. 2015. Moral responsibility for climate change. In Routledge companion to bioethics, ed. John Arras, Elizabeth Fenton, and Rebecca Kukla, 33–46. New York: Routledge. ———. 2016. Vulnerable populations in the context of public health emergency preparedness, planning, and response. In Emergency ethics: Public health preparedness and response, ed. Bruce Jennings, John D. Arras, Drue H. Barrett, and Barbara A. Ellis, 135–154. Oxford University Press: New York. ———. 2018a. Food, fairness, and global markets. In Oxford handbook of food ethics, ed. Anne Barnhill, Mark Budolfson, and Tyler Dogget, 367–398. New York: Oxford University Press. ———. 2018b. Sustainability and resilience. In Encyclopedia of the Anthropocene, ed. Dominick DellaSala and Michael Goldstein, vol. 4, 29–37. Oxford: Elsevier. https://doi.org/10.1016/ B978-­0-­12-­409548-­9.10491-­9. ———. 2020. Ethical challenges posed by climate change: An overview. In Moral theory and climate change: Ethical perspectives on a warming planet, ed. Dale E. Miller and Ben Eggleston, 35–57. London: Taylor & Francis/Routledge. Powers, Madison, and Ruth Faden. 2019. Structural injustice: Power, advantage, and human rights. New York: Oxford University Press. Rawls, John. 1995. Political liberalism. New York: Columbia University Press. ———. 1999a. A theory of justice. rev ed. Cambridge: Harvard University Press. ———. 1999b. The law of peoples. Cambridge, MA: Harvard University Press. ———. 2001. Justice as fairness: A restatement. Cambridge, MA: Harvard University Press. Shelby, Tommie. 2004. Race and social justice: Rawlsian considerations. Fordham Law Review 72: 1697–1714. Sher, George. 1997. Approximate justice: Studies in non-ideal theory. Lanham: Roman and Littlefield. Shue, Henry. 1993. Subsistence emissions and luxury emissions. Law and Policy 15: 39–59. Simmons, A. John. 2010. Ideal and nonideal theory. Philosophy and Public Affairs 38: 5–36. Singer, Peter. 1980. Utilitarianism and vegetarianism. Philosophy and Public Affairs 9 (4): 325–337.

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Sinnott-Armstrong, Walter. 2005. It’s not my fault: Global warming and individual obligations. In Perspectives on climate change, ed. Walter Sinnott-Armstrong and Richard Howarth, 285–307. Oxford: Elsevier. Steffen, Will, Katherine Richardson, and Johan Rockström. 2015. Planetary boundaries: Guiding human development on a changing planet. Science 347 (6223). https://doi.org/10.1126/ science.1259855. UNCCD (United Nations Convention to Combat Desertification). 2017. The global land outlook, first edition. Bonn. https://knowledge.unccd.int/sites/default/files/2018-­06/GLO%20English_ Full_Report_rev1.pdf. UNEP (United Nations Environment Programme). 2007. Global environment outlook: Environment for development (GEO-4). Valletta: Progress Press. UN-Habitat. 2003. The challenge of slums: Global report on human settlements. London: Earthscan. UN-Water (United Nations Water). 2017. Statistics. http://www.unwater.org/waterfacts/. Valentini, Laura. 2012. Ideal versus non-ideal theory: A conceptual map. Philosophy Compass 7/9: 654–664. Wenar, Leif. 2007. Responsibility and severe poverty. In Freedom from poverty as a human right: Who owes what to the very poor? ed. Thomas Pogge, 255–274. Oxford University Press. Williams, Melissa, Rosemary Nagy, and Jon Elster, eds. 2012. Transitional justice. New  York: New York University Press. Winsberg, Eric, Naomi Oreskes, and Elisabeth Lloyd. 2019. Severe weather event attribution: Why values won’t go away. http://philsciarchive.pitt.edu/16065/?fbclid=IwAR0VmnyAtbeRACB1 7ocBBJoEJW_ibtm-­rqZTcvmldMATdym3HyetK0UyG9o. World Bank. 2005. Human development report: Equity and development 2006. Washington, DC: World Bank. ———. 2007. World development report 2008: Agriculture for development. Washington, DC: World Bank Group. World Health Organization (WHO). 2003. Climate change and human health: Risks and responses. Geneva: World Health Organization. http://www.who.int/globalchange/summary/en/.

Chapter 8

An Institutional Ethic of Care Elizabeth Lanphier

Care ethics shifted a focus away from justice-centered ethical theories in order to examine care’s role in grounding an ethical framework: intimate relationships, like those between parent and child, provide a model for ethical engagement. While not negating the need for justice, care ethics variously understands justice to be separate from but intersecting with, parallel and distinct from, or valuable yet secondary to care. The relationship between care and justice is nuanced, and the debate surrounding the apparent tension between the two is lively. On the heels of Joan Tronto’s Moral boundaries, in which she proposed that morality and an ethic of care be understood within a political context (1993, 3), the American Political Science Association held a roundtable discussion on the “care/justice debate” in 1994 (Deveaux 1995, 115), from which a series of papers from prominent care scholars emerged the following year. The diverse contributions to the symposium made plain that there is no simple rapport between care and justice. Arguably, the relationship between care and justice has not grown less opaque in the 25 years since. Theories of justice emerging from a twentieth century political philosophy landscape dominated by John Rawls tend to imagine an ideal world, in which all agents are equal in standing, regard, capacity, and opportunity, and reason about justice from this imagined universal position. Unlike ideal theory that starts from abstract ideals, nonideal theory starts from existing realities (see Introduction to this collection). Care ethics responds to a philosophical history in which abstract universal reasoning occludes the particular needs and contributions of often marginalized or oppressed groups. A care approach centers the previously excluded realms of E. Lanphier (*) Ethics Center, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, USA Division of General and Community Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 E. Victor, L. K. Guidry-Grimes (eds.), Applying Nonideal Theory to Bioethics, Philosophy and Medicine 139, https://doi.org/10.1007/978-3-030-72503-7_8

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motherhood or family life as touchstones for the development of ethical practices. In this way care ethics might first appear outside the scope of the ideal/nonideal theory distinction. Yet care theorists expand on the family or intimate care to mobilize care in “social and political thought and practice” as a “vision of how we can and should live together” (Deveaux 1995, 118). Joan Tronto notes that “the broad political economic concerns that shape the material conditions of people’s lives… and social interactions are incorporated into an ethic of care” (2010, 144). In this chapter I claim that social interactions (and institutions) are not only incorporated into an ethic of care, but social, political, and economic conditions must be addressed in, and most importantly, shaped by, a just ethic of care. Nonideal theories that invite critique of goods, opportunities, and access also invite us to consider that care is a good or opportunity to access or distribute. An ethic of care “requires that we constantly return to the real world of daily-lived lives in order to generate our philosophical and political positions” (Tronto 1995, 144). I argue that care ethics is a nonideal theory, one that theorizes up about justice, but from within existing, and often unjust, conditions. I further argue that understanding care ethics as a nonideal theory does two things. One, it draws care and justice into conversation with each other such that neither one is prior: both can be produced through practices of justice enacted through care, and care must respond to demands of justice. Two, care theory as nonideal theory invites an institutional ethic of care in order to address needs of and for care, and to develop an accountable framework to enact just care. Such an ethic builds on the feminist scholarship deconstructing dichotomous binaries, including gendered dichotomies between justice and care. Additionally, I raise the possibility that an institutional ethic of care might reveal a porous boundary between an ideal/nonideal theory binary. First, I outline the origins of care theory (1.1) and focus on the history of care ethics as diverging from ethical theories explicitly concerned with the administration of justice (1.2). I argue that care is a matter of justice, and the practice of health care provides a case in point (1.3). Second, I briefly survey the distinction between ideal and nonideal theory (2) to argue for why care ethics is a nonideal theory (2.1). Within the literature are ongoing debates regarding various ways in which a theory can be ideal or nonideal. I accept that ideal theory broadly captures theories with a top down framework for justice under optimal conditions, even if these conditions do not exist. Nonideal theory captures bottom up theories that attempt to propose frameworks for justice in light of contingent circumstances with which a society must grapple. Care ethics as a form of nonideal theory makes explicit that care ethics is connected to justice in ways that remain under-developed in the literature.1 As a consequence, and enhancement, of this position, I propose an institutional ethic of care (3). While I am looking specifically at the health care context, I do not 1  Connection between care ethics and nonideal theory is not new: nonideal theorist have, for example, deployed insights from feminist and care theory to support nonideal theoretical concepts of autonomy, for example (Mills 2005, 177). What is more novel about this view is identifying care ethics as a form of nonideal theory, and thus explicitly drawing care ethics into a framework for justice.

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use the term “institutional” to signal a hospital as a free-standing institution, but rather to mean codified social, political, or communal practices.2 Care cuts across individual institutional sites, of which the hospital is just one. The coordination of care at a broad institutional level, to encompass discrete institutions, is part of the demand of justice. The remainder of the chapter defends why an institutional ethic of care is necessary, though not sufficient, for care justice (3.1), including in a health care context (3.2). In conclusion (4) I suggest that while an institutional ethic of care is necessary for a nonideal theory of justice, it gestures toward elements of an ideal theory of care justice, as well.

8.1  Care Theory In this section I broadly consider the topography of the care ethics landscape (1.1), and follow Virginia Held in understanding care as a relational activity, that is both a practice and a value (Held 2006, 36–43). Then I turn to the relationship between care and justice (1.2).

8.1.1  Situating Care Ethics Nel Nodding’s Caring argued for a shift in ethical thinking away from abstract universal principles and toward the affective experience of, and relations involved in, caring. She focused particularly on the moral exchange between, in her language, the one-caring and the cared-for (Noddings 1984). Carol Gilligan subsequently argued that the kinds of moral development and virtues that are aligned with women, and have historically been excluded from ethical theory, are a different (but equal) voice than those of men (Gilligan 1993). 2  I am committed to the terminology of an “institutional” ethic instead of an “organizational” ethic. “Organizational ethics” will already be familiar to many readers. I take organizational ethics to most often describe the operative ethical frameworks internal to how organizations (businesses, non-profits, schools, community organizations, etc.) function, their systems, and their implicit or explicit modes of practice. Organizational ethics may also speak to how these entities interact with each other as well. We might also call many of these entities “institutions” and that would suggest that “organizational” and “institutional” ethics could be synonymous. However, by “institutional” I also want to capture more than these kinds of organized entities. By “institutional” I also mean, for example, governmental policies and practices at local, regional, national, or international levels. “Institutional” also captures looser forms of structured practice, such as common law or custom practices, the concepts of family, or the economy, religious practice, intellectual community and norms, etc. Such practices are not necessarily, or even ideally, connected to a particular organization, or set of organizations. Nonetheless they are practices that can be coherent, systematic, and recognized; they can create connection between those that participate in them; and they may give way to particular organizations in the future, but may also not take on specific organizational shape.

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Gilligan suggested that individualistic virtues of justice and the language of rights that dominate philosophy exclude relational virtues and the language of care. While these may not be strictly or innately gendered concepts, she suggests that men tend to speak and think in terms of justice and rights, which we see reflected in traditional ethical programs, while women speak and think in terms of relationships and care. Care ethics takes up the ethical framework from Noddings, the observations of Gilligan, and contributions by many other feminist scholars, to expand on what an ethic reflecting care might be, and the ethical practices that follow from it. Care ethics centers family and caregiver-child relationships as occasion to theorize about ethics in new ways. Held argues that care is prior to justice for reasons specific to child rearing: “without care no child would survive and there would be no persons to respect” (Held 2006, 17). Noddings suggests that “human love, human caring, will be quite enough on which to found an ethic,” (Noddings 1995, 9). A mother’s care for her child is often presumed to be natural, not ethical, though Noddings takes it to be both natural and ethical (Noddings 1995, 12). Acting upon the choice to care, even if it is a naturally-inclined choice, adds a moral valence to care. Across the care ethics literature, care is characterized differently. Held notes that “caring for” is distinct from “caring about” (Held 2006, 29). Noddings takes a broad view of what care is, but sources it within families and homes, primarily homes that include families with children. Care is a form of work for Tronto and also Sarah Ruddick, whether or not it is formally recognized as such through compensation mechanisms. Tronto and Ruddick both understand care as a relationship, in addition to work, though Ruddick places greater emphasis on the relational aspects of care than Tronto (Ruddick 1998). Noddings and Gilligan focus on affective elements of caring relationships, whereas Diemut Bubeck focuses on the functional role of these relationships to meet needs (Bubeck 1995). Peta Bowden takes care to be a practice that does not require a fixed definition: care is simply the practice of valuing others (Bowden 1997). Tronto and Bernice Fisher have developed one of the more expansive definitions of care, describing it as an “activity that includes everything that we do to maintain, continue, and repair ‘our world’ so that we can live in it as well as possible;” (1990) this activity is not only related to the family or interpersonal care, but includes “a variety of social, economic, and political institutions” (Tronto 1993, 103). They further identify four phases of caring that include: caring about (perceiving needs); taking care of (taking responsibility); caregiving (the work of care); and care receiving (responding to the receipt of care) (Tronto 2010, 160). Held endorses a normative rather than descriptive view of caring relationships, including familial relationships. While maternal/parental caring relationships create occasions for theorizing about care, those relationships are not prescriptive. Accordingly, “care as relevant to an ethics of care incorporates the values we decide as feminists to find acceptable in it,” and is “not reducible to the behavior that has evolved and that can be adequately captured in empirical descriptions” (Held 2006, 39). Yet others, including Noddings, take a naturalized approach to care: a mother’s care for her infant is empirically observable, and is also a fertile site for conceptual

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production, such that the descriptive is prescriptive. Sarah Hoagland argues Noddings’s view has unintended consequences of reinforcing oppressive relationships in which women are tasked with non-reciprocal obligations to care. Characterizing caring obligations as part of feminine nature or natural maternal roles conceals the structural oppression that disproportionately tasks women with burdens of care (Hoagland 1990). Although Held uses the mother-child relationship as a model case, she recognizes father-child relationships, and also acknowledges the potential for parent-­ child relationships to be harmful or oppressive, or lack care (Held 2006, 37). Parental relationships can be oppressive for the parent or child inside them. External expectations on the parent for what kind of role they should enact may be oppressive, especially if becoming a parent, or the social expectations of parenthood in the culture in which they live, were unchosen. There is a delicate line to walk in care ethics between observations about maternal nature, family roles, and caregiving that are foundational for an ethical theory of care being the same norms that historically and presently exclude, oppress, or lead to structural inequality for women, mothers, and caretakers. Held takes care ethics to be a “radical ethic calling for a profound restructuring of society,” including, if necessary, the family structure, once the social and political implications of the view are fully understood (Held 2006, 19). Held’s vision of care as a radical ethic endorses that although care ethics arises from an interest in interpersonal care, the complete reach of an ethic of care is social and political. In the following sections I argue that part of the radical work of care ethics is to reframe the tension between care and justice, and this requires profound restructuring of our social practices of care, including health care, at an institutional level.

8.1.2  Care and Justice How care should or does interact with justice is a point of debate in the care ethics literature, which tends to consider care and justice as values to be reconciled. Yet once we consider care from the standpoint of what Annemarie Mol calls a logic of care (2008), and recognize the ways unchosen and inherited social, oppressive, or structural roles and obligations impact our mechanisms for, expectations of, or access to care, it looks as if care and justice are concomitant concepts. Held describes a common view within feminist and social and political scholarship when she notes that “feminist understandings of justice and care have by now made clear,” in her view, “that these are different values, reflecting different ways of interpreting moral problems and expressing moral concern” (Held 1995, 128). Although care is a political concern (Held 1995, 129) it is not a matter of justice, for “care fosters social bonds and cooperation” while “justice protects equality and freedom,” and these represent “very different emphases in what morality should consider” (Held 2006, 15). A sufficient moral theory needs to accommodate ethics

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of care and justice, but not combine them (Held 2006, 16). It is care that is “the wider moral framework in which justice should be fitted” (Held 1995, 131). Justice and impartiality are separate from care, which allows for, or even requires, partiality (Held 2006, 39). Yet Held also suggests, but does not fully explore, the idea that while there may be “potential conflict between care and justice, friendship and impartiality, loyalty and universality,” at the same time “there need be no conflict if universal judgements come to incorporate appropriately the norms of care previously disregarded” (2006, 11). I take Held to be opening up a possibility for a kind of care justice, in which justice practices rely on and incorporate norms that recognize the role of, and need for, care, not only as a descriptive reflection of our human condition, but as a matter of justice. Justice does not merely deal in “moral minimums,” the floor beneath which we cannot sink, while care is “what is above and beyond the floor of duty,” (Held 1995, 131). As I argue, there is a floor for care as well, and what we should be able to expect and demand of care. Marilyn Friedman also characterizes care and justice as “two distinct forms of moral commitment,” but wonders if they can be drawn closer together (Friedman 1993, 270). Friedman concludes that we cannot “respond to all persons equally well in either way,” and “the only integration possible here may be to seek the more intimate, responsive, committed relationship with people who are known closely, or known in contexts in which differential needs are important and can be known with some reliability, and to settle for rule-based equal respect toward that vast number of others whom one cannot know in any particularity” (1993, 271). One such differential need people have is for care itself. Friedman suggests the “insight that each person needs some others in her life who recognize, respect, and cherish her particularity in its richness and wholeness is the distinctive motivating vision of the ‘care’ perspective” (1993, 270). This care perspective involves “a respect for individual worth, merit, need, or even, idiosyncrasy… which involves admiration and cherishing, when the distinctive qualities are valued intrinsically, and which, at the least, involves toleration when the distinctive qualities are not valued intrinsically” (Friedman 1993, 270). Friedman’s assessment is helpful to hang together an array of views in care ethics around their common features. Yet it is also the case that at least some care occurs somewhere in between cherishing and toleration. But what does or should this care look like? Do we merely accept that individuals who are less valued for their distinctive qualities have fewer caring resources? Can non-intimate care, such as that which is provided in the health care context, fit with the notion of care as responsive to individual cherishing? On an intimate, cherishing view of care, justice and care cannot fit together, unless as a matter of justice individuals are due intimate, cherishing relationships. This cannot be true. Individuals have different background resources to bring about intimate caring relationships, and various fortunes or misfortunes that lead to the creation, maintaining, or dissolution of intimate care. Some people have more caring capital to cash in than others. We might want to say that this is in virtue of how that person has chosen to cultivate her intimate relationships: a person who cultivates caring virtues in turn

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receives respect and cherishing. Yet care is not necessarily about choice (Mol 2008; Hoagland 1990). According to Mol, a logic of choice prioritizes autonomous moral agents who are free (and expected) to make individual, isolated choices, including choosing relationships that offer care, or choosing to be the kind of person who will be cherished or admired for her distinctive qualities. But a logic of choice fails to recognize the ways in which choices are often already limited for us within our contextual constraints, and how individuals are participants in a web of interaction in which they are not simply isolated autonomous agents. A logic of choice might suggest, for example, that if I am unable to care for my kids, this is my fault for choosing to have children. In contrast, care ethics grapples with how to navigate the unchosen relationships or circumstances in which we find ourselves, including parental or care roles (as well as care needs). Mol’s distinction between logics of choice and care foreground the frequent mischaracterizations of many of the things we presume to be choices, that are instead the products of long histories of structural oppression or injustice. The person who “chose” to have children might not have access to birth control, or education around contraception. The person who “chose” to have children might have been raised in an environment that did not allow for women to make choices about their own bodies, such as when and with whom to have sex, or the choice to use contraception or access abortion services. The logic of care (and the insight of care ethics) operates within a relational framework in which we are always already formed within a collective. Situating ourselves within a collective framework, whether the collective of the family, or the collective of civil society, necessarily entails contending with justice. How do we justly distribute goods and attention in a collective? How do we recognize care as a good needing attention, and possibly redistribution? Thinking about care as a collective practice recognizes that care ethics is “something people shape, invent, and adapt, time and again, in everyday practice,” (Mol 2008, 3). It also moves the conversation about care out of its gendered history, understanding it as a social and political process. A logic of care emphasizes the role of collectives in developing practices of care without looking to the family as a paragon collective (and gendered social roles the “family” can inherit and reproduce). Care-oriented justice could recognize that we have particular justice-based obligations to some (and not necessarily only to our immediate kin) due specifically to their differential needs. An ethic of care “posits a very different set of standards for desert: people are entitled to what they need because they need it,” and “people are entitled to care because they are part of ongoing relations of care” (Tronto 1995, 146). These ongoing relations of care, however, are not only or even primarily familial. They are also reflected in our broader social and political connections, including the institutions we communally form and endorse in our practices. Margaret Urban Walker argues not only for why moral particularity is possible, but why it may be required (Walker 1991). Putative equal treatment can obscure bias and perpetuate unequal consideration. Walker argues for reframing the way we conceptualize and foster equality of attention in moral matters such that it becomes a project of attention equity rather than equality. Walker suggests that we should allocate adequate attention to all persons. Adequacy of attention does not imply or

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entail uniformity of attention. Adequate attention given to all ensures that needs for additional attention can be assessed and applied as appropriate (Walker 1991). Appropriate attention is due in response to particular considerations, which are arrived at through training attention on each person (or group) and then allocating the appropriate response, attuned to their needs (Walker 1991). This is both an act of care, by attuning to the particular needs of others, and an act of justice, by allocating appropriate attention to each person (or group) so they receive their fair share of attention and care based on need. Walker’s concept of “partial consideration” affords a method to recognize and respond to justice and care needs, without requiring that we individually cherish or admire the target of our attention. We have to turn our attention to all, at least minimally, and not only those we cherish, in order to assess and recognize potential needs. We must then respond in cases where unmet needs exist. We tend to care for (in the activity sense) those who we care about (in the sense of preferring or liking).3 Yet care as a labor of love (Kittay 1999) or other affective register cannot attend to the ways obligations of care can obscure, undermine, or be undermined by, questions of justice, while also being required as matters of justice. Deeply rooted structural injustice can impact an individual’s abilities to form and maintain sound intimate relationships that would yield caring relationships. Various unchosen or systemic conditions with which individuals (and groups) contend can inhibit cherishing, caring relations: untreated illness; histories of trauma and abuse; resource disparities that force people to leave loved ones to pursue a more financially, socially or politically viable situation; or mere luck, such as forming relationships only to be left in a situation requiring care in the case a partner or children pre-decease you. Care ethics discloses injustices by examining histories of marginalization and exclusion: from public life, from social recognition, and from ethical theory itself. Care ethics aims to address such injustice by re-centering relationships of care, enmeshing care in considerations of justice.

8.1.3  Care Justice and Health Care Although structural social determinants of health are more and more widely recognized, medicine routinely endorses the judgment that some folks get what they are due for “making their choices.” They chose to smoke tobacco, have poor dietary practices, or do not exercise, resulting in various morbidities. Or they chose against forming and maintaining intimate relationships, or chose to treat intimates badly, such that there is no available caregiver in a time of medical need. These are cast as simple choices, and assume that all deciders are freely-choosing rational individuals who have knowingly entered into their decisions. Yet a combination of care theory

3  This might not only be true of our intimate caring relationships, but also of our health care relationships.

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and relational autonomy recognizes how our caring relations are developed in embedded socio-historical ways (see Friedman 2003; Mackenzie and Stoljar 2000; Meyers 1989). Justice, at its most basic, is to give each person their fair share. But of course justice is not a basic matter. It leads to questions about how to conceptualize fairness, and what one’s reasonable share might be. The distinction between ideal and nonideal theory bears this out: while the former might be most concerned with equality, the latter might prioritize equity. Health care clearly involves care, and justice is one of the key principles of health care (Beauchamp and Childress 2019). In this section I suggest the care in health care is a matter of justice, and as such, the care required of health care extends beyond medical care. Yet this care is not necessarily affective, intimate, or natural. The kind of care necessary for health care invites us to reimagine our concept of care within an ethic of care, and how it interfaces with justice. Let’s engage an example: a 20-year-old woman is brought to the emergency room of a major medical center in the US by her husband, and accompanied by her 2-year-old daughter. She is discovered to have heart failure due to a congenital heart defect. She meets all medical criteria to be put on the heart transplant recipient list. However, the patient is an undocumented immigrant, and neither she nor her husband have legal rights to work that would help them access employer-sponsored health insurance. They are working jobs that do not officially report their earnings, which are insufficient for them to purchase private health insurance. And because the Affordable Care Act explicitly restricts undocumented immigrants from purchasing health care on the exchanges, they are not able to buy into a state-sponsored health care program. As noted by Nancy Berlinger and Michael Gusmano, “the publicly funded safety-net provides some access to health care for undocumented immigrants through state-level Emergency Medicaid to cover hospitalization for emergency medical treatment and Federally Qualified Health Centers for primary care” (Berlinger and Gusmano 2013). These mechanisms only address emergency needs, and “access to medically appropriate diagnostics, treatment, and care beyond the scope of these emergency treatment and primary care provisions is severely limited” (Berlinger and Gusmano 2013). They add that while some medical providers might invoke “emergency” treatment as a work-around to manage health needs that would not otherwise be considered emergency care, “this is recognized as an expensive and medically problematic way to treat chronic disease” (Berlinger and Gusmano 2013). Although our 20-year-old patient presented for emergency care, a transplant becomes a chronic condition that a patient must manage for life. The patient would not only require funding or medical coverage for the transplant surgery and recovery, but she would also need to be able to finance (again, through insurance coverage to which she does not have access, or self-pay) the anti-­ rejection medications she would remain on for the rest of her life. These drugs cost tens of thousands of dollars annually without insurance (Aleccia 2018; Vanderbilt University Medical Center 2019). In a New York Times article from 2018, bioethicist Arthur Caplan estimates the average cost of anti-rejection drugs is 2,500 USD

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monthly (Aleccia 2018), while at least one transplant program in the US provides information to prospective patients that the drugs can cost up to 5,000 USD  per month, or 60,000 USD per year (Vanderbilt University Medical Center 2019). Given these constraints, our undocumented and unfunded patient cannot reasonably be listed for a heart transplant. For no medically-indicated reason she cannot receive a heart, and she will not survive without one. Medicine has the knowledge and skill to help this woman live a longer life, mother her child, and not die an early death. But the hands of medical care are tied by social and political factors outside its scope. For this patient, care and justice cannot be pulled apart: care is no longer prior to justice; it is impeded by injustice. Such health care injustices are not merely the result of undocumented immigration or unjust geopolitical systems. Let’s alter our example: our patient is a 45-year-­ old man who has a congenital heart defect causing heart failure, and he will need a heart transplant in the coming years. He is a recovered alcoholic, and his prior alcohol abuse led to the dissolution of his marriage and estrangement from his children, to whom he was abusive when drunk. He grew up in a household with an abusive alcoholic father, and learned as a young man to replicate his father’s drinking and abuse. His family’s withdrawal from his life provided the impetus for him to seek counseling and addiction treatment. His heart is failing, and he requires a transplant. He would be listed for a transplant, for which he meets all medical criteria, and psychosocial criteria, insofar as he has managed his alcoholism and has demonstrated his recovery. However, he does not meet the social and financial requirements for the transplant per the transplant program, whose criteria include having two available caregivers in the home to support his post-transplant recovery. He has health insurance that would support the medical costs, but has does not have any available family or intimate caregivers who are willing to provide the requisite care that is indicated for successful transplantation. He is not in a financial position to be able to pay for professional caregivers himself. Because transplant criteria are designed to best shepherd scare resources like donor organs, listing criteria include having a strong post-transplantation support system (Mehra et al. 2006). However, it is also expected that patients have access to this care, among their own intimates, or the financial resources to pay for care. Is it just that this man be excluded from necessary health care because he cannot access interpersonal care? It is not difficult to imagine a conversation within the transplant listing committee including the thought that he is ineligible for transplant because he has “made his choices,” implying he should then live and die by them. But what if we analyze his case with a logic of care? We can recognize the unchosen, inherited, and oppressive features that impede this patient’s care, including a history of childhood abuse, an alcohol use disorder, and having limited financial resources in a society with enormous wealth disparities. In light of these unchosen, circumstantial, and justice-oriented, impediments to health care access, we can reframe social, caretaking, and financial support as part of, not prerequisites for, just health care. The caring practices and values enacted by health care cannot be separated out from the mechanisms for justice operative in a society. A logic of care helps to

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unpack the ways in which the care in health care is part of larger, systemic issues of justice. Historical, inherited, familial, or circumstantial factors are not merely a series of autonomous choices; they are socially and politically structured features that reflect the basic nonideal structure of society. This nonideal structure includes structurally oppressive practices that exclude some groups and individuals from appropriately accessing the goods and practices of care.

8.2  Nonideal and Ideal Theory Once we accept that justice and care are co-constitutive concepts, we can ask what kind of justice we are talking about when talking about an ethic of care. The debate between ideal and nonideal theory gives insight into the structure and aims of the care justice for which I have argued, and provides shape for the institutional care ethic that I propose meets the demands of care justice. Laura Valentini sources the ideal/nonideal theory distinction in the “methodological paradigm set by John Rawls” and therefore is focused on “ideal and non-ideal theorizing about justice in particular” (Valentini 2012, 655). Elsewhere she notes that “justice concerns what agents are owed” (Valentini 2017, 13 [all italics in original text]). Ideal theory and nonideal theory each propose distinct ways into assessing and distributing what agents are owed as a matter of justice. Canvassing the field, Valentini observes that ideal theory as a term is “employed somewhat loosely, to indicate any theory constructed under false, that is, idealized, assumptions which make social reality appear significantly ‘simpler and better’ than it actually is” (Valentini 2009, 332). Nonideal theory, in contrast, responds to the worry that “principles designed assuming ideal conditions … are ill-suited to guide action in the real world, where such conditions do not hold” (Valentini 2009, 333). Yet a (controversial) paradox in the ideal/nonideal divide is that even if we are working from nonideal theory, we still seem to need ideal theory to “formulate judgements about the justice and injustice of society” and “promote institutional reform,” because it provides “an ideal of what a just society would look like,” even if this is not the society in which we currently live (Valentini 2009, 333). I return to this paradox for nonideal theory in my conclusion. Much like we can mean different things by care, we can mean different things by ideal (or nonideal) theory. For Valentini, there are at least two broad meanings of the “ideal” in ideal theory. One is a non-technical use which “proposes an ideal of a fully just world toward which we should aim” (Valentini 2009, 337). The other engages “ideal” in a technical sense to mean a theory “designed under idealized, i.e. false, assumptions” (Valentini 2009, 338). Whether a theory can be the former without being the latter is up for debate in the literature. Additionally, there are at least three kinds of questions that fall under the ideal/nonideal theory debate: full vs. partial compliance; utopian vs. realistic theory; and end-state vs. transitional theory (Valentini 2012, 654).

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I follow Valentini in accepting that ideal theory can both propose ideal conditions and be designed under idealized assumptions. On my reading of care ethics as addressing and responding to structural and historical injustice, I propose care theory is a kind of nonideal theory reflecting a distinction between utopian (ideal) and realistic (nonideal) theory. However, care ethics also invites questions about what full vs. partial compliance looks like in a just care ethic, and the transitional or end-­ state goals necessary to achieve justice within an ethic of care. Understanding care ethics as nonideal theory in the realistic theory sense informs my proposal for an institutional ethic of care as an ethic that contends with nonideal justice. In my conclusion I wonder (but do not resolve) whether or not we can fully develop this vision of an institutional ethic of care exclusively from within nonideal theory, or if we need, as some argue, a prior conception of ideal theory to motivate a nonideal theoretical approach.

8.2.1  Care Theory as Nonideal Theory Nonidealism implies that “when thinking about justice, we must begin from existing conditions,” with the goal of “a workable plan to ameliorate prevailing social injustice” (Talisse 2017, 59–60). Care ethics provides a realistic theory, one in which we can (and do) live, rather than a utopian or fantastical one. For example, Mol’s view constructs care as an open-ended process (Mol 2008, 20) in which the main moral action is “engaging in practical activities” where “what it is to do good… is not given before the act” (Mol 2008, 86). Values are formed through the process of caring, such that “‘good,’ ‘worse,’ and ‘better’” are not derived from ideals that “precede practice,” but rather arise through it (Mol 2008, 87). The plasticity of an ethic of care affords an approach within which we can reckon existing norms and practices, while critiquing and reforming them. We can reflect on how we shape the norms of caring relationships, even if we cannot entirely choose for or against caring relationships. The caring relationships modeling an ethic of care, including motherhood or parenthood at the foundation of a care ethic, are normative. Held is correct to suggest that the contents of “care” are open to what we determine is appropriate to them rather than being fixed by empirically observable fact. Because the relationships at the center of an ethic of care are normative and not descriptive, there is space to mold and shape both the nature of care, and the ethics that follow from it, as part of an ameliorative project to address social injustice. A mix of queer theory, reproductive technology, and new kinds of gender, marriage, and family social constructs are reshaping who becomes parents and how. Radical feminist and queer critiques have challenged the social constructs in which we parent (e.g. Card 1996), while contract surrogacy upends assumptions about who are parents, and what bonds, rights, or obligations parents have (see Anderson 1990, 1995; Epstein 1995; Wertheimer 1996). Revising norms around parenthood and families (in theory, and more importantly in practice) creates opportunities to

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ameliorate the social injustice of excluding some from these care relationships, while oppressing others in them. Care ethics raises up historically suppressed modes of ethical engagement (care) and historically oppressed ethical agents (initially, though not exclusively, focusing on women4) by value of their unique contributions of care as the basis for an ethical theory. Critical approaches within care ethics trouble the unchosen and oppressive nature of relationships and care obligations. Care ethics works from the premises that relationships are unequal, that needs are diverse, and that we start from different positions of vulnerability and resources. It acknowledges and anticipates inequities between caring and cared-for agents as a fact of the matter (such as between child/ parent). This does not mean that an ethic of care endorses oppression and injustice – it doesn’t. At the same time care ethics does not start from a place of presumed equal standing across all moral agents. Care ethics acknowledges the reality of existing oppression and injustice. The usefulness of this observation is not to be prescriptive about the nature of particular relationships or roles, but instead to navigate, adjust for, and appropriately respond to the structural or power differences that are realistically present in them. As Mol observes: “In the logic of care we are not equal. But the difference between us has little to do with hierarchy… what matters are the horizontal differences between people. These index different needs, and more particularly different needs for care” (Mol 2008, 72). Recalling Walker’s earlier point regarding just distribution of attention to particular needs: attunement to each individual’s diverse needs for care aligns care and justice, and creates the possibility for care ethics to be a nonideal theory of justice. Not all iterations of care ethics function in this way. A plural field is captured under the umbrella of care. Yet in at least some cases care and justice must work together; in those cases care theory is a nonideal theory of care, and an institutional ethic of care attends to the justice demands for and of care. Susan Okin has raised the possibility that an ideal theory such as Rawls’s provides the necessary resources to combat gender discrimination by providing a pathway for family and caregivers to receive rights and recognition (as discussed by Valentini 2009, 344). I take it to be the case that as long as care is normative, care ethics will remain a nonideal theory. However there may be lessons learned from a nonideal theoretical view of care that could inform a more prescriptive model of a kind of care required of and

4  Early care ethics were often interested particularly in women’s experience and concepts of maternal care (see Gilligan 1993 and Noddings 1984, for example), yet others working within care ethics take maternal experience as foundational but not sufficient for an ethic of care (see Held 2006, for example). Carol Gilligan has written about her own realizations regarding multiple oppressions, and learning from feminist scholars of color, about how racial oppression intersections with the kinds of gendered oppression she was considering in her own work (see Gilligan and Ward 2004). I take Kimberlé Crenshaw’s concept of intersectionality (see Crenshaw 1990), which recognizes that individuals and groups are multiply oppressed by their intersecting identity markers, to be apt for understanding the historic and ongoing oppression of care work and care workers, both intimate and professional.

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for justice  (despite concerns raised by Ingrid Robeyns (2008) with idealizations of care). Earlier I noted that the ideal/nonideal theory distinction can address at least three kinds of questions. By arguing for care ethics as nonideal theory I am only addressing the utopian vs. realistic theory question. While I am not able to explore in this chapter full vs. partial compliance or end-state vs. transitional theory for care ethics, these are important questions for future reflection. The very reasons we might resist thinking about care in terms of fairness (reasons of partiality, preference, affection, regard, intimacy, that we want to preserve in caring practices) are exactly the reasons we might want to push care at least partially into an institutional domain. Recognizing that some forms of care, especially within health care, have significant justice implications means that we cannot merely exclude agents from accessing care for reasons of preference, affection, or intimacy. This is not to say that all care must be institutional care. Only some care, and this is the care that interfaces with justice.

8.3  An Institutional Ethic of Care Understanding care ethics as nonideal theory yields the possibility for an institutional ethic of care. Tronto has previously theorized a public ethic of care. Yet a public ethic of care relies on mechanisms of deliberative democracy that appeal to ideal theory, and insufficiently interfaces with the nonideal theoretic nature of care ethics. Building on the insights and ambitions of Tronto, as well as Cheryl Brandsen, I propose an institutional ethic of care that functions as nonideal theory. It is important that this approach be institutional in order to respond to the justice valence that I claim is required of at least some care. We might worry that institutions cannot be caring, nor impart caring sentiments on others. This is similar to the worry Valentini anticipates in the debate between ideal and nonideal theory that using political structures to legislate against discrimination does not in fact remove privately held biases which reproduce discrimination. Valentini rightly notes, however, that “institutions are powerful tools by which to shape social ethos” (Valentini 2009, 344). This holds for the institutional power to shape social practices of just care. We can expand on Bowden’s definition of care as an institution formed by the practice of valuing others to say that it is also the practice of responding to the needs of others. Thus, institutional care responds to justice by allocating to each person that to which she is due: having her basic needs met. We might also worry that by caring for others, including strangers or those with whom we have not historically identified, we are obligated to show love or affection for them. The account of care I am proposing does not need to function on an affective level. This is one reason for moving care out of a primarily intimate or familial model. There is an important need for care to be shown to and directed at particular persons, due to proximity and other features of embedded engagement. But this is distinct from needing to show love, or even affection, or friendship. Care need not

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be grounded in affection or intimacy. It can and should be, at its core, about attention and response to perceived need. Attentive and responsive care is what is required of care justice, and is separate from affective feeling. An institutional care response does not replace or prohibit affective care, but it does aim to avoid the absence of caring mechanisms (an absence we tend to permit as justified) for those who have failed to generate affective, loving, kinship or friendship relationships. No one is due these affective and social experiences as a matter of justice, but their absence is not a justification for the absence of care. Their absence may produce greater obligations of care, in some circumstances, as a matter of justice. This view runs counter to many of our intuitions and assumptions about people, their worth, and the chosen nature of their relationships and behaviors. But although it runs counter to our initial intuitions, once we understand some forms of care as matters of justice, then we must reimagine how we care, and for whom.

8.3.1  F  rom a Public Ethic of Care to an Institutional Ethic of Care I have argued that: care and justice, in at least some instances, address mutual aims; health care is a clear case in which care is a matter of justice; and care ethics is a nonideal theory. I now further develop the idea that care justice must be framed as an institutional form of care, before addressing implications of this view. I am drawing a distinction between “institutions that provide care,” and institutional care. Tronto includes “families, welfare states, and the market” (Tronto 2010, 142), as institutions that provide care. Caring institutions also extend to nursing homes and hospitals, as well as daycares or schools. Institutional care, however, represents systematic and structural care, including coordination among various caring institutions, and engagement of institutions that we do not tend to recognize for their role in care (citizenship or membership in a state; taxation mechanisms; etc.). A persistent problem for care’s relationship to justice is care’s relationship to institutions. Noddings thinks that institutions “in a deep sense” cannot be “ethical.” Instead, “only the individual can be truly called to ethical behavior” (Noddings 1995, 29). Yet institutions are also what reinforce justice, and create accountability. Most of our interactions are not merely between you and me sharing a piece of cake and making certain each has an equal slice so no one gets less than what she is due. And, although some of us have trouble asserting our needs or confronting someone we think has wronged us through small yet existing infractions, they are the easiest to rectify. We can announce our grievance, or we can establish practices in the moment to ward against injustice: I cut the cake, but you choose your slice. Interpersonal care need not be intimate, but it is often individual: “ideally, another human being should be able to request, with expectation of positive response, my help and comfort. If I am not blinded by fear, or rage, or hatred, I should reach out

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as one-caring to the proximate stranger who entreats my help” (Noddings 1995, 27). This view compels us to care for others who are not our intimates, yet permits vulnerabilities that limit obligations to offer care in certain  situations. However, the fear, rage, or hatred with which we might respond to another individual may be a product of systemic, institutional histories of oppression, racism, sexism, xenophobia, etc.: unjust practices that nonetheless provide putative  justification for withholding care. Our apparently isolated responses to individuals may in fact be layered into complex matters of social justice. One route out of this problem of compounded injustices implicitly influencing our care practices, or the withholding of care, is to bolster institutional responses of care. Institutions will often be the source of, and reproduce, fear, hatred, or rage in systemic and structural ways. But making care at least partly institutionally accountable can respond to, and begin to address, the historical biases and structural injustices that lead to fear or hatred (according to race, gender, or ability markers, for example) that are often also institutionally reinforced, and can provide care that does not hinge on its provision by any one particular individual or kind of intimate relationship (Lanphier 2019). Tronto and Held do engage civil society in their visions of care. Tronto bridges public and private through a proposed public care ethic with three presumptions: First, “everyone is entitled to receive adequate care throughout life;” second, “everyone is entitled to participate in relationships of care that give meaning to life;” third, “everyone is entitled to participate in the public process by which judgements about how society should ensure these first two premises” are made (Tronto 2006, 19). The problem with these three presumptions is that they remain on a theoretical, rather than practical plane. The second premise does not guarantee the first, and the third premise does not ensure that the first and second premises will be met; it only proposes universal entitlement to participate in a public process, without laying out how this public process should unfold. Brandsen builds on Tronto’s notion of a public ethic of care to conclude that deliberative democracy is required for a public ethic of care, even though we tend to think of care as localized and limited to caring for one’s own (Brandsen 2006, 223). A public ethic of care moves care out of its historically privatized sphere and into a democratic political process. For Brandsen: “As a moral value, a public ethic of care seeks to assure good care to all members of society” (Brandsen 2006, 208). In Brandsen’s framework, deliberative democratic practices identify needs of caregivers and receivers; are wary of how needs get filtered and who determines them; have mechanisms in place for caregivers and receivers to express needs; develop policies that affirm a “social conception of the self;” and require “collective responsibility for protecting the welfare of vulnerable groups, including those who do the work of care” (Brandsen 2006, 209–210). Appealing to a framework for political processes to address the needs of care, and engaging deliberative democracy to do so in the spirit of universal inclusion, starts to look like an ideal theory for a public ethic of care. My worry is that care ethics, and nonideal theory, are concerned with those who in practice are too often left out of the deliberations. Brandsen underscores the need to protect the most

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vulnerable, who are often also the ones doing care work. Functioning optimally, she seems to suggest deliberative democracy would ensure equal participation even of the most vulnerable. Optimal deliberation allows all concerns to be voiced and acted upon. On the other hand, deliberative democracy mechanisms flatten out difference by promoting equal participation and impartiality. Equality and impartiality can be positive values, yet in diverse settings they can obscure marginalization and oppression (Young 1990). Vulnerable minorities may not have the standing to propose necessary special protections, or steps to rectify marginalization and exclusion. And oppressive majorities will always outnumber minority votes, reinscribing majority interests, which are mistakenly touted as impartial, when they are merely the most prevalent. Thus, a deliberative democracy approach misses what I take to be a crucial insight from Walker regarding just distribution of adequate attention. Equal attention allows for the majority interest to rise to the top if each person has a single, equal weight in a decision. Adequate attention requires us to weight attention in ways that adjust for oppression, exclusion, and marginalization, and informs why some minority interests need to produce majority obligations. We should develop public-facing models for ethical care. Social justice cannot be sufficiently addressed in one-to-one relationships. Yet we also do not only have two choices to either engage in deliberative democracy, or to engage in intimate relationships as mechanisms for care. If we construe care as only – or even primarily  – an intimate, cherishing, interpersonal interaction, we will, at least in some cases, underscore and reproduce injustice. This is especially true when histories of injustice, or even mere (bad) luck, limit individual access to caring relationships. Yet a public ethic of care relying on an ideal deliberative democracy model will also fail to attend to the kinds of justice required of care, and the injustices identified by care theory. The very fact of having access to care relationships might be a matter of justice, and the repercussions of not having access to care relationships will most likely lead to injustices. This is certainly true of health care. As already discussed, in some cases access to health care is contingent upon access to various other forms of care. While a public ethic of care attempts to tackle the social domain of care, and its larger social and political dimensions, my worry is that it flattens out difference. Standard democratic processes contradict the spirit of care and individualized attention: they are aimed to give each person equal weight, despite differential needs. Both potential transplant patients in the previous section are failed by a public process that relies on deliberative democratic mechanisms to achieve social, public care. For different reasons, our undocumented patient and our alcoholic patient need access to forms of care that they do not have in order to be medically successful, and to have access to life-saving medical interventions. The former lacks political recognition, the latter lacks kinship and intimate care; neither can be rectified through deliberative democratic practices. That they lack the relevant kinds of care necessary for organ transplant is a matter of justice, yet one that can be best attended to within a logic of care.

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Care recognizes individual vulnerabilities, particularities, and needs, and attunes a response that is adapted to the situation. Ideal theories of democratic practice cannot accommodate such particular needs. Yet these needs are matters of justice, not charity, beneficence, or the supererogatory. An institutional ethic of care should work from a nonideal theoretical position, recognizing that care and justice must be coordinated, though not generalized. An institutional ethic of care works from a place of plasticity, adopting Walker’s framework for moral particularism in which attention is trained adequately to all, so it can be further allocated appropriately. This attention and allocation ought to include allocation of various caring resources, at the institutional level. Such an institution could be as broad as the government, although I take it to be most useful if we consider institutions with shared social or organizational functions across a variety of levels. Institutions I have in mind will tend to be broader than the family (though the concept of the family is a form of institution), and interior to a larger political system (government is an institution, though smaller-scale governments might be most agile in administering institutional care). We might think about the mechanisms of municipalities and their public works or taxations structures; the various social and political structures that fall within a health center’s catchment area; or other, looser, forms of community membership; as relevant institutions. Institutions are cohesive, yet also in some ways malleable: they respond to or reflect established practice, yet these practices can be revised to accommodate new ways of seeing, being, and evolving norms. Elsewhere I have developed this idea of institutional care as referring back to a specific kind of socio-political moral community I call an “ethical home” (Lanphier 2020). I have also argued for individual responsibility within institutions as part of shared responsibility for community practices of care (Lanphier 2019, 2020). How broadly we define home is part of what is in the balance when we delineate our institutional reach. While “home” imports a connotation of intimate care, and I am trying to shift away from the intimate and affective entailments of care through an institutional care ethic, my concept of an ethical home is not meant to be intimate in the colloquial sense of home.5 An “ethical home” establishes caring institutions, and constructs care as part of the floor of justice that is both a duty, and expectation, among fellow community members (Lanphier 2019, 2020). This view fits with the notion that a “natural network of ties” is a “place to start, but not” the “place to finish” (Baier 1995, 152) in constructing a moral community. It also neither rejects nor requires that care can be done in intimate caring relations. It merely suggests that those intimate caring relations are insufficient, and require institutional relations as well. An ethical home allows for plasticity regarding how we understand networks of ties, and entanglements, with others in our socio-political communities. While my work focuses on expanding the concept of home beyond those to whom we would traditionally be inclined to view as part of our intimate spaces and 5  Asha Bhandary (Chap. 10, this volume) describes “being at home” as the feeling of ease in one’s social environment, drawing on the intimacy and familiarity “being at home” implies, but also extending it to a broader social setting than an intimate domestic sphere.

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obligations, Bhandary (2021, this volume) offers important moral reasons to also limit the scope of an ethical home, and extricating one’s self from places in which they do not feel “at home.” Care as a matter of justice requires institutional coordination, and non-affective, non-intimate care. For if justice is “the virtue that ensures fair distribution of scarce resources” (Baier 1995, 151), then we should understand care itself as a scarce, but renewable, resource. Social practices render some more vulnerable than others, and “certain social institutions” can “predictably and forcefully compound vulnerabilities” (Guidry-Grimes and Victor 2012, 127). Care as an implicit, rather than explicit, expectation of social practice renders some more vulnerable than others. When care is expected to be privately furnished by families (through direct care or paying for professional care, such as in childcare or other dependent care) those without these resources for care are disadvantaged. Those who are paid caregivers are often contingent, vulnerable workers. As I have suggested, a deliberative public ethic of care further compounds vulnerabilities by deferring to practices that might not sufficiently protect or raise up oppressed voices. Institutional care is an approach that addresses these vulnerabilities, and aims to move vulnerable individuals and groups into less vulnerable circumstances.

8.3.2  Institutional Care Ethics in Health Care The care in health care is a practical case from which we can theorize a functional institutional care ethics that reflects care theory as nonideal theory. Health care is already an institutional practice of care. It occurs within discrete institutions (hospitals, clinics), and interfaces with a diverse array of broad social, political, and financial institutions (insurance mechanisms, government agencies, community groups and organizations, social customs). At the same time, health care requires attention to each particular patient, in all her specificity and need. Health care is supplied by professional caregivers who address the very vulnerable needs of non-intimate others. It is also an institution that responds to evolving norms as standards of care reflect new scientific evidence, medical innovation, and social acceptance. Medicine, as currently practiced, runs up against cases in which its best practice is limited by factors that appear out of its control: a patient is not stably housed and this interferes with the medically indicated discharge plan. Another patient is medically ready for discharge and would likely recover much better (physically and emotionally) at home, except she does not have a family member available to provide necessary home-based assistance during recovery, and lacks access to home-health resources, so must remain hospitalized. Parents of a baby who would never have survived a significantly preterm delivery without the current standard of medical practice and knowledge now hope she survives her NICU stay. But they don’t know how they will be able to provide the constant in-home care she will likely require as she grows older.

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Medicine cannot solve these problems, though it often enlists the support of diligent, and caring, social workers and case managers who do their best within a less than optimal system, to address them. This care might be affective, and is likely at least partially effective. However, this contingent care cannot overcome the bigger structural and contextual barriers patients face. Needed resources are often scarce, and run parallel to medical care and access. Situations in which social services and supports cannot be secured are hard cases for medicine: medicine could act, but is limited in doing so by what are taken to be external constraints on medical care. An institutional care ethic shifts how we conceptualize the relationships necessary to achieve certain goods, including relationships of care, relationship to a place to live, or a relationship to a support system. Care is not an infinite resource, though it is one that we can generate and regenerate differently than material goods. At the same time, care often requires or works alongside material goods, which are routinely limited. This is especially true when we think about the ways in which care is often undervalued as uncompensated or undercompensated labor, and this further restricts and marginalizes who has access to care because it is limited to those who have caregivers who can afford to do care work without adequate compensation. Daniel Engster provides an account that justifies the value of health care through its function of care (Engster 2014). According to Engster, health care supports social functioning, quality of life, and minimizes pain and suffering. Further, he argues for the role of health care to provide care, even when it cannot provide optimal health, as an important public good. It is specifically within the scope of medicine to provide this care, rather than family or friends, says Engster, because there are “different forms of care,” and medical providers provide more effective palliative or rehabilitative care, for example, than non-medical caregivers (Engster 2014, 160). In other words, medical care is a unique, and specialized, form of care that is valuable, separate from or in tandem with more “intimate” forms of caring from family and friends. While we can challenge a strict dichotomy between professional and private, intimate and non-intimate care, I take his point as important for the generation of a non-intimate, institutional ethic of care (while acknowledging that medical encounters can be intensely intimate). Medicine has the capacity to provide care that is not narrowly medical, such as when the clinician exhibits care through attention, representation, and affiliation with her patient (Charon 2001, 2008). Finally, there are numerous instances in which the provision of medical care is contingent upon other kinds of care (social, economic, and intimate) being present as preconditions for the success or provision of medical care. Some of these preconditions reflect the kinds of “systemic or institutional conditions” that create “additional barriers to the agent’s ability to develop or achieve well-being” including being part of “historically disadvantaged populations” (Guidry-Grimes and Victor 2012, 136). To adequately and justly provide health care, many more forms of care are necessary, not only parallel or complementary, components. Thinking about an institutional ethic of care including other kinds of social supports as part of health care is not to say that we need to extend these supports and

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care to all persons automatically, as part of a universal health care scheme.6 Instead it is to say that when social support and care resources present obstacles to receiving health care, we need to respond to them as a component of health care, not merely barriers to it. This view gives more latitude to, and a stronger requirement for, addressing barriers to health care when they arise, because we understand them as integral to the aims of health care itself. These supports are integral to health care that is grounded in the values and practices of care itself, but which is not constrained to a private, intimate, or affective approach to care.

8.4  Conclusion: Nonideal Theory Informing an Ideal One? Scholars within the ideal/nonideal theory debate recall that Rawls saw ideal theory as a precondition for nonideal theory: only once we have the structure of an ideal theory sufficiently in place can we then work within it to develop a corollary nonideal theory that can reckon with the real conditions under which justice is or is not being realized. Those who defend nonideal theory over ideal theory reject this position, suggesting that we cannot address justice from an abstracted or ideal basic framework without contending with contextual features, and therefore start from nonideal theory (Robeyns 2008). Working with care theory as nonideal theory to develop an institutional ethic of care places care theory in direct conversation with (nonideal) justice. And yet, by emphasizing elements of an institutional care ethic necessary for justice, we start to see features of care that could be made into a basic framework for care. An institutional ethic of care centers care as a value and practice that is not limited to or by individual relationships, but becomes part of the basic structure of society. It must operate at a society-level in order to meet the demands of justice that I have argued are required of adequate attention to care, including care provided through social and political recognition, economic benefits, and non-affective interpersonal care. Moreover, an institutional health care ethic models the ways in which care is a matter of justice, and justice requires care, collapsing a binary view of care and justice that care ethics diagnoses, but also at times reinforces. Tronto notes that “care is not solely private” and “it can concern institutions, societies, even global levels of thinking,” but that care “necessarily turns our attention to the concrete” (Tronto 1995, 145). My own stance is not that care can concern institutions and

6  This point does not negate the idea or value of a universal health care scheme. Rather, were such a universal health care scheme operationalized in the United States, or these forms of care adopted by existing universal health care systems, my point is that policy and practice guided by an institutional ethic of care would likely best focus on raising folks up to a moral minimum of care as a first step. This recognizes that not all people will necessarily require all or some institutional forms of care, but all persons should be able to access and benefit from them, if and when they are needed. Even without universal health care, an institutional ethic of care could inform policies and practices to better support care practices within socio-political communities.

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societies, but that care must concern institutions and societies, by bringing attention to the very concrete institutional, structural, and historical ways in which we have access to or are excluded from caring systems that shape our available choices and options in health care. Madison Powers draws on Katrina Forrester’s (2019) assessment that by focusing on institutions as the locus of justice, ideal theory deflates individual responsibility for justice (2021,  this volume). Powers responds to the omission of individual accountability produced by ideal theory by underscoring how “institutional change itself is dependent on individuals taking responsibility” for actions, which in Powers’ case is individual contribution to environmental harm (2021, Chap. 7). Consistent with Powers, I understand institutions and individuals to be co-constitutive. If a risk of ideal theory is deflating individual accountability in favor of institutional accountability, a risk of sidelining care theory from (non) ideal theory is the exclusion of institutions from individual accountability for and contributions to care. An institutional ethic of care may not fit neatly into a division between ideal and nonideal theory. Robert Talisse has critiqued the strongest form of nonideal theory, “anti-idealism” (Talisse 2017, 61), as “insufficient for action-guidingness,” while acknowledging that “ideal theory, by itself, is also insufficient to guide action in the face of real-world injustice” (Talisse 2017, 69–70). An anti-idealism form of nonideal theory might resonate with classical approaches to an ethic of care. Yet my argument is that to do justice with care requires care and justice in direct conversation, and this occurs through an institutional care ethic in which the domain of care and the domain of justice coexist. By failing to fully connect care and justice, we risk overlooking the very issues that nonideal theory wants us to contend with: the nonideal conditions from which we need to think about justice. We also risk failing to appropriately care if we cannot accommodate the care of those who fall, for reasons of social injustice, outside the scope of individual and intimate care. But if this is right, and care theory converses with justice through an institutional ethic of care as I propose, it is also an action-guiding theory: it guides us in prescriptive caring practices we ought to ideally strive to enact through institutional practices of care and justice. And if Talisse is right, then it means an institutional ethic of care is not only a (soft) nonideal theory, but also has something to say to ideal theory, at least insofar as it starts to look like a prescriptive theory to create ideal, fully compliant, end-state conditions. This suggestion is open for debate, but let me close with one way a nonideal theoretic institutional ethic of care tips its hand toward an ideal theory of care justice. According to Noddings there are two criteria governing obligations arising in care relations. These include an “absolute” condition that there is a present relationship, or the potential for one; and a “priority” condition informing how we prioritize our care according to the “dynamic potential” for growth of the relationship “including the potential for increased reciprocity and, perhaps, mutuality” (Noddings 1995, 15). The kinds of relationships in which care occurs would ideally have the potential for reciprocity and mutuality, but reciprocity and mutuality are not necessary conditions for care. This must be the case since care ethics work from the fact of the

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matter, including the reality of unequal relationships of care, rather than assuming equal standing among all agents. Reciprocity suggest a parity of exchange. Reciprocity might also suggest that the caregiver has her own need fulfilled by caring. But this over-idealizes care. Providing care might be undesired, unchosen, and unfulfilling, yet may still be an obligation to which we are required to attend with co-engagement. I think we need to be able to accept that giving care might not always be directly or mutually beneficial to the caregiver, and that care may not always, or even often, be expected to be reciprocally returned. Reciprocity or mutuality are not necessary nor sufficient conditions for care. However, they may reasonably be preferable or aspirational conditions for care. We could imagine basic structures of society that would support institutional practices to bring about reciprocal, aspirational care justice, in a utopian world. Such a basic structure gestures toward an ideal theory. Acknowledgements  I am grateful for detailed and constructive comments on initial drafts of this chapter by both Nancy Berlinger and Laura K. Guidry-Grimes. I also thank Larry May for his support of, and feedback on, earlier iterations of this project. I have additionally benefitted from many fruitful conversations with Joseph B.  Fanning about logics of care, institutional practices, and health care.

References Aleccia, JoNel. 2018. No cash, no heart: Transplant centers need to know you can pay. New York Times. https://nyti.ms/2E3GhuO. Accessed 18 Mar 2020. Anderson, Elizabeth. 1990. Is women’s labor a commodity? Philosophy & Public Affairs 19 (1): 71–92. ———. 1995. Value in ethics and economics. Cambridge: Harvard University Press. Baeir, Annette C. 1995. A note on justice, care, and immigration policy. Hypatia 10 (2): 150–152. Beauchamp, Tom L., and James F.  Childress. 2019. Principles of biomedical ethics. 8th ed. New York: Oxford University Press. Berlinger Nancy, and Michael K.  Gusmano. 2013. Undocumented immigrants & access to health care. Available via http://undocumentedpatients.org/wp-­content/uploads/2013/03/ Undocumented-­Patients-­Executive-­Summary.pdf. Accessed 30 Oct 2019. Bhandary, Asha. 2021. ‘Being at home,’ White racism, and minority health. In Applying nonideal theory to bioethics: Living and dying in a nonideal world, ed. Elizabeth Victor and Laura Guidry-Grimes. Cham: Springer. Bowden, Peta. 1997. Caring: Gender sensitive ethics. London: Routledge. Brandsen, Cheryl. 2006. A public ethic of care: Implications for long-term care. In Socializing care: Feminist ethics and public issues, ed. Maurice Hamington and Dorothy C.  Miller, 205–226. Oxford: Rowman & Littlefield. Bubeck, Diemut. 1995. Care, gender, and justice. Oxford: Oxford University Press. Card, Claudia. 1996. Against marriage and motherhood. Hypatia 11 (3): 1–23. Charon, Rita. 2001. Narrative medicine: A model for empathy, reflection, profession, and trust. The Journal of the American Medical Association 286 (15): 1897–1902. ———. 2008. Narrative medicine: Honoring the stories of illness. New  York: Oxford University Press. Crenshaw, Kimberlé. 1990. Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review 43: 1241–1299.

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Deveaux, Monique. 1995. Shifting paradigms: Theorizing care and justice in political theory. Hypatia 10 (2): 115–119. Engster, Daniel. 2014. The social determinants of health, care ethics and just health care. Contemporary Political Theory 13 (2): 149–167. Epstein, Richard A. 1995. Surrogacy: The case for full contractual enforcement. Virginia Law Review 81 (8): 2305–2341. Forrester, Katrina. 2019. In the shadow of justice: Postwar liberalism and the remaking of political philosophy. Princeton: Princeton University Press. Friedman, Marilyn. 1993. Beyond caring: The de-moralization of gender. In An ethics of care: Feminist and interdisciplinary perspectives, ed. Mary Jean Larrabee, 258–274. New  York: Routledge. ———. 2003. Autonomy, gender, politics. New York: Oxford University Press. Gilligan, Carol. 1993. In a different voice. Cambridge: Harvard University Press. Gilligan, Carol, and Janie Ward. 2004. Forward. In Race-ing moral formation: African American perspectives on care and justice, ed. Vanessa Siddle Walker and John R. Snarey. New York: Teachers College Press, Columbia University. Guidry-Grimes, Laura, and Elizabeth Victor. 2012. Vulnerabilities compounded by social institutions. International Journal of Feminist Approaches to Bioethics 5 (2): 126–146. Held, Virginia. 1995. The meshing of care and justice. Hypatia 10 (2): 128–132. ———. 2006. The ethics of care. New York: Oxford University Press. Hoagland, Sarah L. 1990. Some concerns about Nel Noddings’ ‘caring’. Hypatia 5 (1): 109–114. Kittay, Eva F. 1999. Love’s labor: Essays on women, equality and dependency. New  York: Routledge. Lanphier, Elizabeth. 2019. Complicit care: Health care in community. Dissertation, Vanderbilt University. ———. 2020. Ethical home: Making, remaking, and unmaking moral community. Social Philosophy Today 36 (1): 105–124. Mackenzie, Catriona, and Natalie Stoljar. 2000. Relational autonomy: Feminist perspectives on autonomy, agency and the social self. New York: Oxford University Press. Mehra, Mandeep R., Jon Kobashigawa, Randall Starling, Stuart Russell, Patricia A. Uber, Jayan Parameshwar, Paul Mohacsi, Sharon Augustine, Keith Aaronson, and Mark Barr. 2006. Listing criteria for heart transplantation: International society for heart and lung transplantation guidelines for the care of cardiac transplant candidates  – 2006. The Journal of Heart and Lung Transplantation 25 (9): 1024–1042. Meyers, Diana T. 1989. Self, society and personal choice. New York: Columbia University Press. Mills, Charles. 2005. ‘Ideal theory’ as ideology. Hypatia 20 (3): 165–184. Mol, Annemarie. 2008. The logic of care: Health and the problem of patient choice. New York: Routledge. Noddings, Nel. 1984. Caring: A feminine approach to ethics and moral education. Berkeley: University of California Press. ———. 1995. Caring. In Justice and care: Essential readings in feminist ethics, ed. Virginia Held, 7–30. New York: Routledge. Powers, Madison. 2021. Individual moral responsibility in the Anthropocene. In Applying nonideal theory to bioethics: Living and dying in a nonideal world, ed. Elizabeth Victor and Laura Guidry-Grimes. Cham: Springer. Robeyns, Ingrid. 2008. Ideal theory in theory and practice. Social Theory and Practice 34 (3): 341–362. Ruddick, Sarah. 1998. Care as labor and relationship. In Norms and values: Essays on the work of Virginia Held, ed. Mark S. Halfon and Joram C. Haber. Lantham: Rowman & Littlefield. Talisse, Robert B. 2017. Can nonideal theories of justice guide action? In Political utopias: Contemporary debates, ed. Michael Weber and Kevin Vallier, 57–72. New  York: Oxford University Press. Tronto, Joan C. 1993. Moral boundaries. New York: Routledge.

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Chapter 9

Power, Identity, and Liminality in an American Hospital Anna Gotlib

In early February of 2018, just as the spring semester was beginning to take shape and right after I introduced my students to medical ethics, my life, quite literally, came to a sudden and dramatic halt. Overwhelmed by a powerful and dangerous infection, I first became aphasic, and was soon thereafter transported to a Brooklyn hospital by ambulance. After that point, aside from the ER doors opening and some vague sense of being wheeled in on a gurney, my memories stop for about a week: In order to save me from the seemingly relentless march of my illness, the medical staff placed me in a medically-induced coma and moved me to the ICU. Because this chapter is intended to be a work in moral philosophy and medical ethics rather than a personal narrative, I will refrain from detailed descriptions of the medication-­ induced hallucinations that are my only recollection from that time. However, for the sake of framing the sense of patient isolation, liminality, and vulnerability that are central to my claims, I note that the kind of terror, confusion, and identity-­ destroying fear they engendered ought to figure in any patient-centered understanding of the hospitalization experience. In many ways, they are the patient’s experience, as many of the procedures, especially if done while the patient is unconscious, do not form the deeply identity-constituting memories that the patient takes with her once discharged. What she remembers are all the times in-between the surgeries and the tests—all the times that involve some levels of conscious human interaction (or its lack), awareness of one’s environment as healing (or its opposite), and a sense of being cared-for (or its absence). She might not remember the intubation, the surgery, the actions of the medical staff around her, but she may remember what came after: the always-disturbed sleep, the throngs of grand rounds medical students standing around her bed while a physician quizzes them about her symptoms and diagnoses—and all the empty hours in between, marked by constantly-beeping A. Gotlib (*) Philosophy Department, Brooklyn College CUNY, Brooklyn, NY, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 E. Victor, L. K. Guidry-Grimes (eds.), Applying Nonideal Theory to Bioethics, Philosophy and Medicine 139, https://doi.org/10.1007/978-3-030-72503-7_9

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machines, the cries of other patients, and the claustrophobia, isolation, and otherness that came to define her hospitalized self. These common phenomenologies of hospitalization are largely underreported, undertheorized, and too often are missing from the medical and bioethical discourses about patient care, autonomy, and treatment. And yet to the patient, they are everything—they are what the chart fails to convey, what consent forms fail to cover, and where any efforts directed at truth-telling and openness simply collapse. It is here, in the spaces between active treatment and discharge that the hospitalized patient can begin to lose herself as a self—indeed, where her personhood begins to disintegrate, contributing to a traumatizing break in her understanding of who, why, or how she is. Doubly-marginalized by serious physical illness and her experience of hospitalization, this break can be devastating, resulting in existential, life-altering losses that extend much past the patient’s release. The hierarchical practices and juridical moral theories that govern physician-patient hospital relationships in the United States largely disregard such losses by paying insufficient attention both to power differentials and to the unique contexts and dilemmas presented by individual cases. Patient care calls for better, nonideal, more fluid approaches to the well-being of this vulnerable population. That is, the current hospital patient-care practices seem to be grounded in theories that are neither fruitfully action-guiding, nor based on an awareness of structural and individual oppressions and vulnerabilities. Specifically, the medical and administrative norms that seem to pervade American hospitals’ approaches to patient care both harm and alienate those subject to their power by damaging one of the few things that an otherwise seriously ill patient might still have: her sense of personal identity. By stripping away not only patient self-trust and voice, but also any semblance of agency itself, the current normative models of hospital care mark those already burdened by illness, fear, and suffering as mere bodies, and not as persons—as parts of the machinery of modern medicine, perhaps even as its beneficiaries, but not as morally equal participants in the mutual pursuit of healing. Moving toward any semblance of change in addressing this ongoing traumatization of the vulnerable requires a fundamental re-assessment of the relationship between the patient and the institutional arrangements and priorities of the hospital itself. For such a reevaluation to take place, nothing less than an institutional shift toward a nonideal, narratively-grounded, non-juridical approach to the overall well-being of the patient is required.1 In this paper, I will first begin with several examples of patient experiences in American hospitals. I then offer an analysis of how and why both structural models of hospital care as well as the prevalent hierarchies of biomedical culture come to shape patient experiences, and why the time is long past for significant structural and practical changes. Finally, I turn 1  My general argument about the centrality of care within institutional settings, such as hospitals, echoes that of Elizabeth Lanphier in her paper “An Institutional Ethic of Care” (Chap. 8, this volume). Although my primary focus is not on issues of justice, I find her claim that “[t]he caring practices and values enacted by health care cannot be separated out from the mechanisms for justice operative in a society. A logic of care helps to unpack the ways in which the care in health care is part of larger, systemic issues of justice” compelling (Chap. 8, this volume).

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to nonideal value theory—specifically, to narrative theory—as a way to begin navigating away from hospitalization-acquired traumas, and to move toward broader paradigms of healing. Only then might the status of the patient as a person begin to matter as an essential part of normatively-guided, meaningful practices of hospital care.

9.1  Patient Identity as Trauma It is one thing to write about patient trauma and liminality as a value theorist, a bioethicist, a physician, or a feminist—as someone investigating a complex, multifaceted phenomenon that calls for careful analysis—and quite another to find oneself in medias res, without the perspective and security granted by epistemic distance. Indeed, many physicians, scientists, academics, and others have turned to chronicling and deciphering others’, as well as their own, illnesses and traumas from that most uncomfortable and painful perspective of personal experience (Kleinmann 1988; Frank 1995; Lindemann 2001; Brody 2003; Charon 2001). In this sense, my contribution to this kind of discourse is neither novel nor unprecedented. Yet I must confess that it took the brutal immediacy of the ongoing trauma of my own hospitalization and post-discharge experience to force me to confront the identity-shattering phenomenology of patient liminality without centering the requisite nods to ideal theory, concerns about institutional procedural fairness, and the usual worries about health care justice. While theoretical concerns, institutional justice, and health care access all matter—and matter greatly to patient well-being— the missing piece, the part that is too often left out, has less to do with questions about what something is or ought to be, and more to do with what it is like. I suggest it is like nothing that one can reasonably imagine from the outside. To know what it is like, we have to start with the wounded body, or, to put it in more traditionally-philosophical terms, with the phenomenology of being a patient. Generally, phenomenological accounts tend to center the body as a locus of experience (Damasio 2000). Bodies are the means through which we take in the world, and through which the world views us—fundamentally, we know ourselves because we are embodied, because we are flesh and bone. When this experience of familiar embodiment breaks down—especially when this breakdown occurs suddenly, without much warning or preparation—our sense of ourselves can shatter, splintering our identities into a “before” and an “after.” In between these shards lies trauma. How and why patients become traumatized can take many forms, have a number of sources, and even more explanations, narratives, and etiologies. My own experience began with the horror of aphasia, but did not end there. The process of losing my sense of who I was, and the subsequent loss of myself as a whole person, continued unabated even after the ravages of the illness itself began to recede. So what does trauma of the patient look like, and how does it further damage a patient’s already fragile sense of self? I will offer a brief overview before turning to a more specific discussion.

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Broadly understood, trauma is an experience of helplessness before an overpowering and overwhelming force that both strips one’s agency and capacity to imagine oneself otherwise, where “otherwise” might just mean the way one was before the catastrophe. Hospitalization-induced trauma, as I noted earlier, forces a schism between one’s experiences “before” and “after”. It can destroy one’s narratives about oneself so dramatically that one can no longer see a connection to who, or what, one was before. In place of these identity-constituting narratives, trauma can offer other stories, frighteningly effective and efficient in taking up the damaged narrative spaces with stories of defeat, fear, loss of control, isolation, and worthlessness—or with no story at all. While PTSD is one of the more commonly-noted consequences of (hospitalized) patient trauma, hospitalization’s aftermath can be more subtle, yet just as destructive (Siddique 2013; Conger 2006). The body and the mind enter an uneasy, tense dance of mutual mistrust, neither recognizing the signals, nor their impetrations, culminating in a kind of embodied chaos where one’s psychological and physical safety are in doubt, severing the self from its usual moorings. At the same time, due to both physical isolation from one’s familiar world and to a lack of connection to unfamiliar, cold, institutional realities, the hospitalized patient loses that which sustains her sense of self even when she cannot sustain it on her own: her connection to others. Indeed, Hilde Lindemann, among others, has argued that it is exactly this connection to one’s family, friends, and communities that shapes, defines, and holds together our identities, and that it is this connection that we need most as persons when we are at our weakest, our most powerless and vulnerable (Lindemann 2001, 2014). Without these self-sustaining narratives, as a patient’s sense of herself in the present, past, and future grows ever more tenuous while her physical survival is existentially threatened by illness, she becomes isolated, liminal, and traumatized. In the totalizing environments of the ER and the ICU—locations of complete hegemony of the biomedical institution over its patients—she is frozen in an alien perpetual present that neither makes sense nor that she can sensibly weave into a coherent story of who she has been. Reduced to a bed number and a wrist bracelet as identifying markers, she has neither physical nor narrative control. Nothing makes sense, and nothing promises to do so.

9.1.1  The Trauma of Hospitalization Let’s now move beyond the chaos and fear of the ER and ICU, and to the patient’s new realities of the monotone machine noise, odd schedules, and hours of isolation of the inpatient floors. Here, ostensibly out of immediate danger, the patient enters another liminal-making state: unending boredom. Begin with the long, lonely stretches of time when a hospitalized patient is simply lying in bed. Instruments buzzing and beeping, she remains still, her arms most likely attached, via a series of IVs, to even more plastic tubes, restricting movement. In between the morning’s grand rounds, the hourly vitals check, the occasional visit

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by a specialist or family member, and the oddly-scheduled, often-invasive tests, she is alone: Mrs. Cannel is lying in bed and it is quiet in the room. She yawns and her eyes stay dull. Her body shows lethargy. “Imagine you just lay here for months” she sighs. Everything indicates that she finds it very boring in the hospital. (…) Mrs. Cannel talks about the trees and the cars on the road she sees from her hospital bed through the window. I hear the clock ticking and the hands point four o’clock; the time when the change of shift occurs. The corridor is empty. It is silent. A nurse passes by. After a while, she suddenly says, more to herself than to me: “How many steps would walk through the corridor every day?” I feel myself being swept into the rhythm of Mrs. Cannel and it feels like I am experiencing something of the boredom she goes through (Fieldnotes 2011) (Meide et al. 2013, 732).

If not bored, the hospitalized patient might be in unacknowledged, unrecognized, and often invisible, distress. When Charlotte Yeh, an emergency physician, was badly injured when struck by a car, her experience in the ER allowed her to glimpse the patient experience: The admitting ED team scurried me into an examination room, where they asked if I was having any pain. It seemed an incongruous question, seeing as a car had just plowed into me. Yes, I was in considerable pain, I told them. An IV was inserted, and morphine began to flow. […] I told the doctor that I had severe pain in my knee and backside. “OK, we’re going to need a CT [computed tomography] of the abdomen, CT of the pelvis, and x-rays of the chest,” she said. Something didn’t seem right to me. Wasn’t she going to examine my knee and backside? When the tests were completed, I was wheeled out of the exam room, still flat on my back. By this time, roughly three hours after the accident, the ED was chaotically busy and all of the rooms were filled, so I was parked in the hallway. A new round of clinicians—presumably the admitting trauma team, although I wasn’t sure—stopped by my stretcher. […] An inpatient bed wasn’t available yet, so I would be “boarded” in the hallway until one opened up (Yeh 2014).

Even once away from the chaos of the ER, I lay there on my gurney all night—nearly fifteen hours—with my work BlackBerry, my personal cell phone, and a morphine drip, watching the bustle of hospital traffic around me. Several times during the night, my blood pressure was taken. When the pain returned every two or three hours, I caught the eye of hassled staff members and had them tell the nurse, who would come by to give me a quick infusion of morphine. As a patient […] I felt alone. I was struck by the demeanor of some hospital staff who rushed by. It seemed as if they were deliberately avoiding eye contact with any of us poor souls waiting in the hallway, lest they be interrupted and asked for help. I wanted contact […] I wanted someone present, looking out for me (Yeh 2014).

When physicians did finally take note of Yeh, her concerns were dismissed, and her post-hospitalization well-being was not even an afterthought:

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“Nothing is broken; you can go home now,” said one of the team members. I was stunned. I was still in excruciating vice-like pressure pain, and my knee and backside still hadn’t been checked. By now, no one had examined my swollen right knee or left hip area to determine the extent of my injuries beyond broken bones […] No one had talked with me about whether I would be able to function safely at home, or about follow-up care, either (Yeh 2014).

Among the many elements of these traumatizing experiences, what perhaps stands out the most is the movement from chaos to isolation to boredom to lack of certainty about what comes next. During my own hospitalization, I had a sense that what I was going through might resemble a kind of game that I could not possibly win: in desiring to move away from the isolation and boredom of my bed, I imagined the possible relief brought by the human contact of, say, medical staff and testing—only to flee back to isolation when no relief came, and back again. No place was safe, non-isolating, and non-disempowering. Indeed, the crushing boredom of rooms filled with the beeping and buzzing of medical equipment was only broken by invasive and oddly-scheduled nursing visits (why would my vitals need to be checked at three-thirty in the morning, at precisely the moment that I managed to fall asleep). Or else, the grand rounds crowds burst into the room: the chief, with residents and students in tow, bothered very little with niceties of human interaction, immediately launching into quizzing the subordinates about the course of “x infection” in room #____. Most of the residents and the students, eager to please, and taking cues from their chief, guessed at what organ or process might be malfunctioning, and what further tests would be required, failing to make eye contact or even attempt to call me by my name. Meanwhile I, the patient, am present, but only marginally so as a person—more as an object of inquiry, a case study of what can go so very wrong. After they leave, more isolation, only broken by tests, and, occasionally, by a “patient advocate” whose main task was to keep the peace and to do preventative caretaking for the hospital’s legal worries. Significantly, all of this takes place while the patient’s hospital gown gapes open in all the wrong places, while she is still haunted by opioid-induced hallucinations and nightmares—and while her questions and worries, whatever they might be, are too often left unanswered, dissolving in the discontinuity of the constant stream of new and unfamiliar medical staff whose shifts have, in too many cases, stretched for far too long. This process repeats itself until she is discharged. Thus, over even relatively short periods of time, the hospitalized patient thus becomes traumatized. The trauma, I suggest, results from at least as much the phenomenology of hospitalization as from a given illness or condition that brought her there: she suffers not only because she is ill, but because she feels ignored, distrusted, and othered—left in a hallway, like Dr. Yeh, as yet another obstacle to avoid. In other words, she becomes an inconvenient and burdensome object: she feels dehumanized through practices of de-individuation and mechanization that take away her personal identifying characteristics, marking her instead as just another instantiation of brokenness, a body that refuses normative functioning (Haque and

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Waytz 2012). Things are happening to and around her, but without her participation as an agent, as someone whose preferences, feelings, and desires matter. With disease the main focus and with care segmented into highly specialized fields, patients suffer a kind of fragmentation, their experiences of illness lost in the chaos, and their sense of personhood fading altogether. As another hospitalized patient noted: It’s never the same doctor, one becomes mad at this. You do not feel … how do I say it, you do not feel human, but … as an object on a conveyor belt, no one really cares. They have decided, medical science has determined, that’s the way it is (Berglund et al. 2012, 5–6).

Perhaps one way to understand this hospital-acquired trauma is as a kind of world loss. What is lost is the possibility of a coherent continuity not just of one’s capacities, plans, and comforting sense of the ordinary, but of a world that previously has comprised one’s personal identity, a world where one is intelligible to oneself and to others. Once this world is gone, it is unclear what remains. In my case, it took tremendous effort to re-claim myself as an agent and as a person; too often, this effort took the form of exhausting and draining resistance to ongoing oppressive medical narratives that reified me just as a body in trouble, a locus of disease in a hallway. Sometimes this resistance, mostly in the form of conversation to remind my caregivers of my humanity, worked, and I would be called by my name, or else the purpose of a given test might be explained to me. Other times, the response was blank smiles, a pat on the hand—or nothing at all. This trauma of a world lost followed me, and follows many others, beyond the hospital doors, threatening to overtake what was left of life, post-discharge. I turn to the particulars of this secondary, post-hospitalization trauma next.

9.1.2  The Trauma of Post-hospitalization Upon discharge from the hospital, life rarely returns to normal. In fact, it can become more oppressive still. Perhaps a personal anecdote would be illustrative here: When I was finally allowed to return home, what I had in my possession included a thick stack of paperwork—my “discharge file”—that contained rather technical, often shorthand notations of how I ended up in the hospital, the record of my vitals, the various diagnoses, as well as the reasons that justified discharge. I was told to “check in” with my general practitioner, to take my medication, and…not much else. (All of this took place after about 3 weeks of hospitalization, including one week of ICU, and many other hospital misadventures that are not directly relevant to my argument here). My most vivid memories from that time are ones of an overwhelming sense of sadness, isolation (as I had a hospital-acquired injury that made mobility an issue for quite some time), lack of desire for anything but sleep—not the restful, rejuvenating kind, but the kind of sleep in which one can, at least for a little while, hide from the growing, PTSD-driven despair of wakefulness. Trying to contact any of my hospitalist physicians with questions and concerns proved to be an ordeal in itself: too many times, messages were left unanswered, trying to track down

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specialists resulted in vicious circles of phone calls with disengaged, unhelpful, and unsympathetic supporting staff, and even when a physician did respond to my concerns, there was simply no space, no time in between rapid-fire questions and responses within his or her relevant specialty to say “help me, my world has crumbled.” During a particularly long wait-time during one of these calls, a disinterested-­ sounding voice on the line off-handedly suggested that perhaps I should find a therapist. This was no backwoods clinic—this was a major hospital in one of the world’s largest cities. I do not share my story for its uniqueness, or its shock value, or even because I still harbor some resentment for my post-discharge experience. The reason that I include it is precisely because of its ordinariness, its commonality and ubiquity of some of its features among those discharged after serious illness (Hoffman 2013a). Some of these post-discharge traumatic experiences include symptoms such as muscle weakness and balance issues, cognitive issues and memory loss, anxiety, depression, and nightmares. Collectively, they have a name: post-intensive care syndrome (PICS) (Wright 2018). PICS can be quite long-lasting: For example, researchers at Johns Hopkins University found that survivors of a life-threatening lung injury suffered from debilitating anxiety disorder for 2 years after they were discharged (Black 2013). After ICU-based and other treatments with powerful drugs (often opioids), “the patients had flashbacks of their experiences, such as thinking they were going to die” (Black 2013). Yet, while many hospital discharge papers included a list of follow-up appointments to specialists, few include any discussions of mental health. This leads one to wonder, if physicians know the regularity with which PICS, PTSD, and other traumatizing post-hospitalization psychological disturbances occur, why is mental health not a part of post-discharge aftercare? As Dr. Bienvenu, a psychiatrist and associate professor at Johns Hopkins University School of Medicine, notes, “[e]veryone pays attention to whether patients can walk and how weak they are. But it’s the exception for them to be screened for psychiatric symptoms like post-traumatic stress or low mood” (Hoffman 2013a). From the point of view of ideal (bioethical) theory, the patient has been determined to be sufficiently autonomous, able, and competent to move on, and, in effect, to become her own advocate for any further treatment; the hospital’s duties, as understood both legally and morally, have been met. From the point of view of patient phenomenology, however, the struggle to recover from serious illness becomes more than a physical checklist—it becomes an existential struggle with one’s new and unfamiliar identity, one’s fractured memories, interspersed with clearer recollections of hallucinatory nightmares. While navigating the world with a newly broken body, one has to contend with limitations born of psychological wounds and subsequent emotional collapse. Most of this, unless the patient takes the initiative herself or is fortunate to be surrounded by a strong base of support, is experienced without the help of those who discharged her with a “good luck” and some paperwork. Practically speaking, she is alone, without a net.

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9.2  Medical Practice and Liminality It seems clear that the liminality and trauma of the patient experience is neither isolated, nor something that can be dismissed as the product of oversensitive, fragile patients. Its reality is quotidian, unexceptional, a part of the American hospitalization process. This ubiquity forces the question: why and how does the suffering born of these practices come to be? While the reasons are complex and multifaceted, I will focus on a few central concerns that have set biomedical institutions on a particular course that makes such trauma not only common but predictable, expected, and, indeed, perhaps no longer shocking. The story begins with medical education. Even though students are trained by ever-increasing numbers of highly-skilled specialists, and while their education necessitates proficiency with an ever-growing variety of complicated technologies, some notable exceptions aside, discussions of illness as patient experience is too often granted tertiary status (Haque and Waytz 2012). In fact, a statistically significant decrease in physician empathy seems to take place during medical school (Newton et al. 2008; Nunes et al. 2011). Whether this change has to do with the burden of medical education itself, the attitudes toward patients that the students absorb directly and indirectly from their professors, residents, and other authority figures, or for some other reasons, its impacts are broad and deep. This is particularly unfortunate as many students gravitate toward medicine for reasons that seem to be driven by a desire to not only heal, but to connect. A personal anecdote might be useful here. When my pre-med students first encounter Samuel Shem’s (Stephen Bergman’s) The house of God—a novel first published in 1978, chronicling the experiences of medical interns at a fictionalized Beth Israel Hospital through often disturbing accounts of physician and patient dehumanization reinforced by residency training—they tend to respond with shock, surprise, and often, with dedication to push against some of the worst, most traumatizing aspects of medical care. They, verbally and through their writing, commit themselves to break the cycle of biomedical trauma, of patient liminality and physician callousness, of mutual unknowability and identity-destroying isolation. These reactions and motivations, however, seem to fade as the realities of modern medical practice becomes less theory and more a matter of professional survival. Somewhere between class discussion about empathy, their first medical school exams, and their residencies, physicians are forced to embrace schedule-driven, profit-driven, highly regimented top-down ideologies of overwork, reliance on technology, and patient objectification as substitutes for care. Indeed, whatever empathy or sense of a desire to help those suffering drives students to medical schools, young doctors’ empathy wanes in the third year of medical school, when students start seeing patients on rotation. Danielle Ofri notes that because the medical system, and the education that trains people to be its practitioners, devalue both explicitly and implicitly the psychological and emotional aspects of health care, physicians practice what they are taught: to be efficient, self-protective, and professionally distant. For example,

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an intern, handed a dying baby whose parents don’t want to see her, is curtly told to note the infant’s time of death; with no empty room in sight, the doctor slips into a supply closet, torn between keeping an eye on her watch and soothing the baby (O’Rourke 2014).

However, the physician rarely remains torn. Once the profession-preserving choice to distance oneself from one’s patients is made, the patient then becomes a medical puzzle, a technical challenge, a physical entity that has to be made to cooperate, to conform, and to respond to treatment: The body is totally vulnerable; manual and mechanical pressures are exerted on it in order for it to be rendered legible to intensive care staff. So the body is sorted out by being assimilated into the fabric of intensive care, which makes it hard to separate out the points of the body and that of technology (White 2008, 126).

Within this rush toward expediency and technology-driven efficiency, the phenomenologies of illness, hospitalization, and suffering itself can get lost. The unequal power relations, already inherent when one party is burdened by illness, are made more unequal still when the disempowered are further silenced not necessarily deliberately, but via hundreds of small acts of isolating, of neglecting, of anonymizing, or abandoning. This silencing is not only damaging to patient experiences, but to treatment outcomes themselves. As a 2014 Commonwealth Fund report notes, the United States medical institutions “underperform […] relative to other countries on most dimensions of performance. (In fact, currently the U.S. ranks last among eleven major industrialized nations in health outcomes attributable to medical care.)” (Davis et al. 2014). The reason for this is not the lack of money or institutional resources,2 nor a lack of “patient-centered care” mantras and slogans posted on so many hospital walls, but something else that is a lot more difficult to quantify: spend a day in an emergency room, and chances are you’ll be struck by two things: the organizational chaos and the emotional detachment as nurses, doctors, and administrators bustle in and out, barely registering the human distress it is their job to address. The same could be said of our oddly bloodless debates about the future of health care. The rhetoric of medical reform draws mostly on economics: Experts differ over, among other things, how to structure “insurance mandates” and what constitutes “overutilization” of a rapidly expanding array of high-tech procedures and diagnostic tests (O’Rourke 2014).

Much has been written about the structural and bureaucratic confusion and unnecessary expense of a mixed Medicare/for-profit medical system that for most people offers only limited, expensive care, and insurance coverage that too often disappears when it is needed most urgently. I will not rehash these by-now all-toofamiliar justice-centered arguments here: yes, the for-profit, fee-for-service system of medical care actively denies patients care, and strains medical staff beyond their breaking point. But other effects of American medical education, structure, and bureaucracy—the lack of emotional care, the rushed of patient sorting, the treatments of medicine as yet another business—are what bring about what Atul Gawande insists are the deeper wounds of neglected persons and unnecessary suffering (O’Rourke 2014). That is, while the current models of medicine value  Individual access to health care is a central and complicated issue that I do not address here.

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aggressive, quantitative (and litigation-proof) disease-focused interventions, care for persons falls by the wayside. In part, this is due to the defensive, technology-reliant structure of the biomedical intuition. Physicians are rewarded for doing more, running more tests and procedures—both necessary and more in line with what is known as “defensive medicine”—instead of for practicing more individual-centered, slower-paced (in non-emergent situations), and more involved care. At the same time, insurance companies set increasingly lower fees, forcing physicians to maximize the number of patients they see per hour. Hospitalists tend to spend less than 20% of their day with patients, devoting the rest of their time to processing forms, reviewing lab results, maintaining electronic medical records, dealing with staff, and so on (O’Rourke 2014). Then, there is the culture of medicine and medical training itself. As I noted earlier, even before the crush of medical employment begins, the physician is taught from her earliest days in medical school that her job is to treat, to cure, or, at best, to manage disease. In fact, as Gawande writes, for the physician, “nothing is more threatening to who you think you are than a patient with a problem you cannot solve” (O’Rourke 2014). To simply witness, to be with a patient whose illness is beyond one’s ability to heal cuts against not only the motivational structure of modern American medicine, but it is seen as a deeply-threatening violation of one’s identity as a physician: To simply sit with one who can no longer be healed is just sitting with one’s professional failure. Even if a patient is not beyond repair, any time that is not spent “treating” is time wasted, unaccounted for, and squandered on “soft,” non-quantifiable activities more suited to friends and family. So perhaps we ought not be too surprised to see patients alone and liminal, waiting for their next blood draw or test. We should be alarmed by this state of affairs not only because it seems to be the standard way that modern medicine is done, but also because the consequences are such that for patients (and most people were, are, or will be patients at some point in their lives), this common experience of treatment is indelibly damaging to their sense of themselves as persons: Any patient in a hospital, when we take their clothes away and lay them in a bed, starts to lose identity; after a few days, they all start to merge into a single passive body, distinguishable … only by the illnesses that brought them there (O’Rourke 2014).

But we seem not to be alarmed—or at least not sufficiently so to demand changes in biomedical ideologies and practices with the same focus and urgency with which we call for better, more just access to care, or for the lowering of the overinflated and prohibitive prescription drug pricing. Instead, as patients, we tend to accept that hospitalization, when we can afford it, is something to endure and to accept as is— as something necessarily mechanized, expedient, and isolating. Yet, as we have already seen, neither hospitalization nor post-discharge experiences leave us unscathed. Thus, in the face of increasing demands on the medical profession and ostensible patient acquiescence, a compromise seems to have been struck that sidelines the crisis of damaged patient identities—so much so that it often becomes the

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grounding principle of how physicians view themselves in relation to those for whom they care. Sandeep Jauhar, a cardiologist, tells us that [t]oday’s physicians […] see themselves not as the “pillars of any community” but as “technicians on an assembly line,” or “pawn[s] in a money-making game for hospital administrators” (BPI education 2018).

Given the structural and cultural disincentives medical professionals face in providing non-othering, non-traumatizing care to some of their most vulnerable patients, what is left to do? While I will turn to this question in the next section, I want to leave the current discussion with a more hopeful narrative. Not all hospitalcentered medical experiences, it seems, are defined by economic pressures, oppressive medical cultures, and lack of patient care: Laguna Honda Hospital, an old facility in San Francisco for the poor and chronically ill, rejects modern medical trends with what it calls “slow medicine.” Here, what is offered, other than treatment, is time, conversation, observation, and healing that come from knowing and approaching the patients as whole persons, rather than as instantiations of conditions and vectors of illnesses. The difference in this approach begins with paying the proper attention to what it might be like to find oneself seriously ill and in a total institution without much control, and then alleviating and ameliorating some of the resulting stressors. For instance, instead of isolated and regimented mealtimes, patients eat in sunlit rooms, and are encouraged to garden and to socialize with each other. One of the hospital’s doctors, Victoria Sweet, in tending to her patients’ physical and emotional wounds, offers care—the kind of attention, listening, and communication that not only de-others the suffering patient, but helps in more precisely diagnosing and treating the illness. Indeed, she is able to make diagnoses that her patients’ previous doctors missed. Relying on close observation to help her understand what’s really going on, she weans them from an average of 20 medications to six or seven. She finds that discarded medical practices—for example, manipulating the lymphatic system with an old-fashioned medical girdle—may have more to offer than contemporary interventions do. In one heartbreaking case, she realizes that an elderly patient is not suffering from Alzheimer’s following a hip surgery, as doctors at the woman’s former hospital concluded—a diagnosis that led to antipsychotic medicines, her removal from her own home, and her separation from her mentally disabled daughter. Rather, she is in pain: the hip had slid out of place, and no one responsible for her follow-up care had noticed (O’Rourke 2014).

The fact that these practices are possible in an institution marked by neither advanced technologies nor by economic resources should prompt us to ask whether the current direction of American medical care is either economically optimal or conducive to patient well-being and healing. In fact, it very well might be neither. Fortunately, outside of the singular example of Laguna Honda Hospital, there is indeed a movement toward change—the kind of change that centers care over frenetic activity, turns to relational approaches over strict ideologies, and strives to see the whole person over the fragmented patient. I now turn to these developments within what is known as narrative medicine.

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9.3  H  olding Each Other’s Gaze: Narrative Medicine and the Power of Stories So where are we now? The needs of traumatized, disempowered patients push against harried, overworked, and multiply-motivated physicians and other medical staff. In approaching these dilemmas, much of medical ethics literature argues for shaking up the biomedical hierarchies through better-defined, more focused practices of patient autonomy, informed consent, and less paternalistic physician-patient relationships. While questions of effective communication, given the differentials of power between the physician and the patient, have their place in these analyses, the central focus still seems to be on more precise procedures and on the ideal theories (on autonomy, or consent, etc.) that justify them. That is, the emerging organizing categories of improved patient care include those that allow us to justify the claims that patient A fully and meaningfully consented to treatment B, and that Doctor C neither pressured nor deceived nor otherwise abused the patient in the course of such treatment. The closer the physician-patient interactions approach the ethical ideals of autonomous choice and mutual respect, the more reasons there seem to be to declare both a moral and a practical victory over the vexing human puzzles of biomedicine. Except that we can see how this ideal-theory-grounded search for autonomy and consent only addresses a part of one’s experience as patient. As I argued earlier, patients were too often treated as neither moral nor epistemic agents, in the end ceasing to be persons within the institutions on which their very lives depended. So, what is missing? The short answer is time, attention, and a kind of “holding,” or sustaining, of patients in their personhood, regardless of their abilities to do so for themselves (Lindemann 2014). The longer answer is a bit more complex: I suggest that in medical practice—and especially in the practices of hospitalization—what is needed is not just finding some time to listen to patients between one’s “real” medical duties, but centering this being-with and witnessing of another’s suffering as an essential part of care—care that extends beyond adequate protection of patient autonomy, competent administration of tests, and successful treatment of symptoms. How to approach this challenge is not a matter of finding the right ideal theory— it is about reforming practice. In fact, it just might mean exchanging a top-down justification of procedures for less idealized, less regimented norms of care that view patients as whole persons whose lives are interrupted by illness, rather than as loci of disease and symptoms behind which a human being might still reside. These practices begin with tending to a patient’s experience of her treatment. Regardless of how advanced the technology, how skilled the physicians, or how efficient the staff rotation, there is no autonomous-enough patient who will not suffer from the isolation of a cold hospital room. There is no consent form that covers an agreement to be a nameless “infection x in room y” for crowds of eager medical students at seven in the morning. There is no discharge document detailed enough to attend to a patient’s post-hospitalization mental health, compromised as it might be by the nightmarish hallucinations, anxiety, and eventually, PTSD. Does this then mean that

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ideal value theory itself, and the medical practices that it ostensibly makes morally intelligible, are simply not applicable to the phenomenologies of patient experiences? If autonomy and respect for persons are insufficient for alleviating the liminality and trauma of hospitalization, is there anything that is? I suggest that the answer is a tentative “yes”—tentative, because what I offer are evolving, developing practices of care; yes, because they seem to open up new moral spaces between patient and physician through what Rita Charon calls physician “narrative competence”—the ability to listen, understand, and appropriately react to patient stories in the context of their lives (Charon 2001). Through the reading of literature on the one hand and unhurried patient-attuned interaction on the other, physicians can learn how stories—especially the stories of patient identities—are constructed, what matters to their maintenance, what can destroy them, and, importantly, how to listen to them as they are told. The goal is developing a kind of imaginative empathy—a broad moral imagination—that can engender more nuanced approaches to the practices of medical care, and perhaps avoid some of its more traumatizing aspects. This practice of careful, engaged listening to one’s patient is called narrative medicine—the nonideal, non-hierarchical, non-juridical approach to care that calls for less top-down theory and more patient-specific practice; fewer rules and more openness to mutual listening; not so much set definitions of professional success, and more attention to the idiosyncrasies and psychological dimensions of individual physician-patient interactions as a way to promote healing. In doing this, narrative medicine aims not only to validate the experiences of the patient, but also to encourage creativity and self-reflection in the physician’s responses to suffering. It is through these stories, the practitioners of narrative medicine claim, that patients and physicians come to meet each other’s gaze as moral agents, and as persons. Indeed, [a]s a model for medical practice, narrative medicine proposes an ideal of care and provides the conceptual and practical means to strive toward that ideal. Informed by such models as biopsychosocial medicine and patient-centered medicine to look broadly at the patient and the illness, narrative medicine provides the means to understand the personal connections between patient and physician, the meaning of medical practice for the individual physician, physicians’ collective profession of their ideals, and medicines discourse with the society it serves. Narrative medicine simultaneously offers physicians the means to improve the effectiveness of their work with patients, themselves, their colleagues, and the public […] Only then can the physician hear—and then attempt to face, if not to answer fully—the patient’s narrative questions: “What is wrong with me?” “Why did this happen to me?” and “What will become of me?” (Charon 2001, 1897–1899).

This requires a bit of clarification. Narrative normative approaches to identity come out of a rich tradition of nonideal sociopolitical and ethical theories that challenge normative ideal theories not only “as-normative,” but “as- idealized” (Mills 2005, 166). That is, nonideal theorists put empirically-informed, epistemic pressure on idealized theoretical claims about what people ought to be like, how they ought to act, what kind of society they should create, and so on. It is this conflict between the idealized and the actual that forms the fundamental schism between ideal and

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nonideal approaches to moral and political conceptions of the good. As Charles Mills notes, [w]hat distinguishes ideal theory is the reliance on idealization to the exclusion, or at least marginalization, of the actual […] ideal theory either tacitly represents the actual as a simple deviation from the ideal, not worth theorizing in its own right, or claims that starting from the ideal is at least the best way of realizing it (Mills 2005, 168).

The realities of individual and collective oppression, unequal social structures, histories of exclusion, and other limitations on the ideal (whether character or society) are either negated, or else passed over by ideal theories without much note; or else dismissed as impaired, damaged, or failing a given ideal standard (Mills 2005). If ideal theories are indeed normative in any meaningful sense, their aim has to be to offer something that is not simply action-guiding, but possible for human beings who, for a multitude of reasons, many not of their making, neither possess ideal characters themselves, nor who find themselves in ideal physical, moral, or political spaces. In other words, moral (and political) theory cannot just be a matter of establishing “a grand social ideal” to which all must aspire, regardless of circumstances, moral luck, of histories of oppression (Valentini 2012, 8). It has to be responsive to, and not merely didactically critical toward, how the actual lived and experienced world happens to work. Yet, it is this world that ideal theory leaves behind by abstracting away from realities crucial to our comprehension of the actual workings of injustice in human interactions and social institutions, and thereby guaranteeing that the ideal-as-idealized-model will never be achieved (Mills 2005, 170).

It is this universalizing move that the contextualized particularisms of nonideal theories reject, centering instead persons, situations, and moral dilemmas as they happen to develop amid the ebb and flow of histories and stories that can, in equal part, create and destroy human agency. In this vastly complicated and morally messy process, nonideal theory does not assume the posture of an ideology, requiring conformity of the actual to the ideal, but rolls up its sleeves and locates itself inside, and within, communities of the imperfect agent and of the burdened decision-maker in order to move toward more nuanced, inclusive, and meaningful moral understandings. In fact, as Ingrid Robeyns argues, [n]onideal theory […] entails an analysis of how to make tradeoffs between the ideals of social justice and other values, such as efficiency, stability, or sustainability—since these choices inevitably have to be made when considering justice-enhancing policies (Robeyns 2008, 349).

Thus, if ideal theory trades in glittering generalities about how individuals, and entire societies, ought to be, its pretentions as an effective action-guiding, systematizing approach to addressing the human condition fail profoundly when confronted by the dizzying complexities and contingencies of the world and its inhabitants that it is meant to instruct. It is a map to largely imaginary lands, or else a set of wholly mistaken directions to real ones. Yet, if idealized moral agency is just as impossible as an idealized system of justice, then nonideal ethical theories have to take up the normative mantle in ways that make contact with human lives as they

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are lived—without at the same time falling into the mutual traps of moral relativism and political nihilism. It seems to me that if nonideal theories have any hope of offering coherent, yet non-universalizing, conceptions of who we are and what we ought to do, they have to begin by first asking perhaps one of the most difficult questions of all: how we come to be as persons. In other words, they must develop approaches to how personal identities can be created, maintained, and destroyed. The idea that narratives are central to the formation and maintenance of personal identities is one that is familiar to defenders of nonideal ethical theories, bioethicists, and others (Gotlib 2015; Charon 2006; Lindemann 2001; Eakin 1999; Frank 1997). For example, Hilde Lindemann (2001) has argued that our personal identity is comprised of the first-personal stories we tell others about ourselves in combination with the third-personal stories others tell about us. These stories constitute us as moral agents who are held responsible, who can hold others responsible, and who engage in practices that allow us to become a part of a universe of mutual moral understandings with other such agents (Lindemann 2001; Walker 1997). In other words, as a normative matter, through stories, we become persons. If we allow that human beings are in fact natural storytellers who both think with, and through, stories, then stories seem like a promising method of counteracting the traumatizing and disempowering hierarchical normativities and practices of hospitalization. Since the hospital is not only a total institution, but also a moral universe, its practices and methodologies must be addressed not only instrumentally, though procedure modification, but normatively, through practices that lead to a different moral attunement. As a normative theory that takes a patient’s phenomenology of suffering just as seriously as her symptomology, narrative medicine offers a viable alternative to the disempowering and liminal-making consequences of individualistic medical principles grounded in the straitjacket of ideal moral theory and the resulting practices of professional distancing. As practice, it engages with the lived realities of what it is like for patients to experience illness, and turns these phenomenologies of illness into a patient-centered, rather than a sickness-centered, medical encounter (Lindemann 2001). One way to conceive of narrative medical practice is a process of “holding” (Lindemann 2014) of patients by physicians: a physician can “hold” her patient by hearing what the illness means to him, and how it fits, or violates, the story of his life that he has lived thus far, and by making this information just as much a part of the charting and treatment as testing and imaging. This way, while the patient’s life trajectory might be radically altered by a given medical encounter or hospitalization, his personhood remains intact—supported by the physician who, even while delivering distressing news, is nevertheless doing all she can to honor the human being at the center of the machines, words, needles, and charts. What does this mean in practice? Consider the following: As patient meets physician, a conversation ensues. A story—a state of affairs or a set of events—is recounted by the patient in his or her acts of narrating, resulting in a complicated narrative of illness told in words, gestures, physical findings, and silences and burdened not only with the objective information about the illness but also with the fears, hopes, and implications associated with it […] As the physician listens to the patient, he or she follows

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the narrative thread of the story, imagines the situation of the teller (the biological, familial, cultural, and existential situation), recognizes the multiple and often contradictory meanings of the words used and the events described, and in some way enters into and is moved by the narrative world of the patient […] Only then can the physician hear—and then attempt to face, if not to answer fully—the patient’s narrative questions: “What is wrong with me?” “Why did this happen to me?” and “What will become of me?” (Charon 2001).

In other words, the physician both hears, and honors, the distressed person in the middle of the maelstrom of illness. Does this practice help to ameliorate the trauma of illness and hospitalization in ways that more traditional methodologies have failed? The short answer is that it is promising: In a project of the Veteran Administration entitled “My life, my story,” VA staff and volunteers conduct interviews with veteran patients and write brief stories about their lives, always beginning with the question of “[w]hat do you want your care team to know about you as a person?” (US Department of Veteran Affairs 2018). If a veteran chooses to participate in the program, their story becomes just as much a part of their medical record as blood tests and hospitalizations: Dr. Tamara Feingold-Link has […] first encountered one of the biographies generated by My Life, My Story when she was on rotation at a Boston-area VA. Her attending physician asked her to run a meeting with a patient’s family. “I barely knew the patient, who was so sick he could hardly talk,” Feingold-Link recalls. She noticed his medical record included the patient’s life story, something she had never seen before. She immediately read the story. “It brought me to tears,” she remembers. “When I met his family, I could connect with them immediately.” Now Dr. Feingold-Link has started a similar program at Brigham and Women’s Hospital (Sable-Smith 2019).

In order to assist physicians like Dr. Feingold-Link, Rita Charon, one of the progenitors of narrative medicine practice, has developed what she calls a “parallel chart,” which directs medical staff, in addition to traditional records, to record the emotional toll of the hospital experience on the patient. This chart requires the physician not only to have the kinds of conversations that center the patient-as-person, but to record them as diligently and as accurately as a list of symptoms or prescriptions. This parallel chart then follows the patient during their hospital stay, reminding all not only about the particulars of their disease, but their illness experience and its centrality in the overall treatment plan. A version of the parallel chart has been developing in the less profit-motivated, NHS-run medical practices in Great Britain and elsewhere in Europe: In a diary kept for a patient in a British intensive care unit, nurses wrote: “You suffered a seizure at home and woke up near the fire, switched sit off and watched TV…. You phoned your dad because you noticed you had burned the right side of your face.” Doctors “told you that you would need to be sedated and a tube inserted into your mouth and connected to a ventilator (breathing machine).” “Your mum stayed with you…. A catheter was put into your bladder so we could keep a close eye on how much wee you are passing” (Hoffman 2013b).

In fact, these European “bedside diaries have been a fixture for more than a decade,” including pictures, entries from relatives about what took place, how it

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affected them, and so on (Hoffman 2013b). Post-ICU, they are then given to the patient for whom the process of reading about what actually took place, while difficult and often painful, can alleviate the symptoms of PTSD by helping them move past the trauma of hospitalization-induced hallucinations, memory lapses, fear, and sense of powerlessness. Knowing that neither the terrifying visions nor memory lapses have to be the permanent legacy of their hospitals stays has proven to be demonstrably beneficial: “at three months ICU patients with pronounced symptoms of PTSD reported the most relief if given diaries, compared with those who were not” (Hoffman 2013b). In the United States, similar efforts have been slow, in part due to the litigious and defensive nature of medical practice, especially given American medical privacy laws, and in part due to the split allegiances—to the hospital, to personal career and financial interests, to insurance companies—that so many medical staff must balance against patient care. Given the great asymmetries of power between physician and patient, this balancing often tends not to favor the latter. The result is that there is nobody to “hold” the patient in her personhood during a dehumanizing hospitalization process, and there are no stories left for her to recover after the initial traumas of illness are behind her. In this silence, punctuated by memory holes and her own hallucinatory visions—indeed, a common “recollection” from the I.C.U. tends to be the persistent idea that dangerous substances are being forced on the patient while she is powerless to resist—the patient’s sense of her own liminality and brokenness far outlast the illness itself. The trauma of the hospital room thus produces a deeply damaged self, with no apparent means of repair. In the absence of stories, this new self becomes something worse that alien—it becomes unknowable.

9.4  Conclusion Through our stories, we hold each other’s gaze. In this gaze, we can see that while we are our physical bodies—and, in the case of illness, our poorly-functioning bodies—we are more than that. While hospitalized, I could feel my weakened limbs, I could hear my raspy breathing, I could see the very many needles going into my body, attached to myriad plastic tubes. But I could also sense the confusion, the fear, the powerlessness, the loneliness—and, eventually, the trauma—of being seen only as such a body, only as an “infection x in room __.” The internal, existential struggle that is all too common in hospitalization and serious illness was my own, and whatever parallel chart might have made my psychological and emotional burdens a bit more bearable was simply not there. Would it have helped? I think so. In the recounting of a heart attack at age 39 followed by a serious cancer diagnosis, Arthur Frank notes “[c]ritical illness leaves no aspect of life untouched … Your relationships, your work, your sense of who you are and who you might become, your sense of what life is and ought not to be— these all change, and the change is terrifying […] What happens when my body

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breaks down happens not just to that body but also to my life, which is lived in that body” (Frank 1991, 6). This is the vital insight: while sick bodies are treated, the frightened and traumatized persons are too often left to their own devices. This is no grand statement of Cartesian metaphysics. It is simply the realization that those who are seriously ill and hospitalized have already had—that while their conditions might be cured, or at least controlled, whatever happens to them beyond their clinical status is secondary at best and someone else’s problem at worst. Narrative medicine, in centering the patient as a troubled whole, moves us in the direction of addressing, and perhaps of preventing, some of the interminable suffering of the hospitalized and post-hospitalized self. Is this not asking too much of the physicians who are already pulled in so very many directions? The numbers of patients, the pressures from the for-profit biomedical industry, the desire to help everyone, and the limitations of their own overworked bodies present real and significant burdens (DocCharge 2018). The answer is, for now, “perhaps”—but not entirely for the reasons listed above. The molding of the modern physician begins early, and the lessons tend to be lasting. Even in medical school, often-idealistic students are told to guard and maintain their professional distance, to not befriend patients, to protect themselves against too much involvement in a sick person’s life. This, of course, can make a lot of sense—if a physician was deeply invested in the minute details of every patient’s story, she might be paralyzed by the kind of fear that counsels against the treatment of one’s close friends or relatives. While medical students, and eventually physicians, are perhaps rightfully guarded against excessive emotional proximity to their patients, the other limit—the one that counsels against being too distant and removed—is reified daily by legalistic duties of care, formulaic patients’ rights forms, and other impersonal checklists that technically can be met by minimal levels of respect for patient autonomy, truth-­ telling, and professional skill. In part, that is just how modern medicine sees, and reproduces, itself: top-down, regimented, rule-bound, careful. Importantly, this early, and repeated, professional permission to ignore patient phenomenologies in favor of other priorities is also how medical professionals can enact their own discomfort with, and avoidance of, what Frank describes as “conditions of embodiment that most of us would rather forget our own vulnerability to” (Frank 1997, 84). The hospitalized patient is maybe too difficult, too stark of a reminder of the contingencies of being human. Indeed, to one whose job it is to fix the broken, the seriously ill patient might present as an emotional and intellectual dilemma– an unsettling, identity-­threatening conjunction of one’s limits as a physician and of one’s vulnerabilities as a person. This unmooring from the certainties of modern medicine thus reveals the physician’s detachment as not only a professionally-guarded position, but also as a self-­ protective one. As Anatole Broyard said after receiving his cancer diagnosis, this physician wariness does not leave the patient with much hope for an empathic connection: “To most physicians my illness is a routine incident in their rounds, while for me it’s the crisis of my life. I would feel better if I had a doctor who, at least, perceived this incongruity” (Broyard 1990). It is the moral and phenomenological chasm born of this incongruity that narrative medicine seeks to bridge by bringing

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physicians and patients together into the difficult, mutually identity-threatening spaces of illness where both, with much compassion, attention, and care, can find each other.

References Berglund, Mia, Lars Westin, Rune Svanström, and Annelie Johansson Sundler. 2012. Suffering caused by care—Patients’ experiences from hospital settings. International Journal of Qualitative Studies on Health and Well-Being 7: 1–9. Black, Harvey. 2013. A hospital stay can trigger PTSD. Scientific American. https://www.scientificamerican.com/article/hospital-­stay-­can-­trigger-­ptsd/. Accessed 11 Aug 2019. BPI Education. 2018. A broken system is burning out physicians. https://pbieducation.com/a-­broken-­system-­is-­burning-­out-­physicians/. Accessed 11 Aug 2019. Brody, Howard S. 2003. Stories of sickness. New York: Oxford University Press. Broyard, Anatole. 1990. Doctor talk to me. The New York Times Magazine. https://www.nytimes. com/1990/08/26/magazine/doctor-­talk-­to-­me.html. Accessed 28 July 2019. Charon, Rita. 2001. Narrative medicine: A model for empathy, reflection, profession, and trust. Journal of the American Medical Association 286 (15): 1897–1902. ———. 2006. Narrative medicine: Honoring the stories of illness. New  York: Oxford University Press. Conger, Krista. 2006. Hospital visits linked to post-traumatic stress syndrome. Stanford Report. https://news.stanford.edu/news/2006/january25/med-­conseling-­012506.html. Accessed 1 Aug 2019. Damasio, A. 2000. The feeling of what happens: Body, emotion and the making of consciousness. London: Vintage Books. Davis, Karen, Kristof Stremikis, David Squires, and Cathy Schoen. 2014. Mirror, mirror on the wall, 2014 update: How the U.S. health care system compares internationally. The Commonwealth Fund. https://www.commonwealthfund.org/publications/fund-­reports/2014/jun/mirror-­mirror-­ wall-­2014-­update-­how-­us-­health-­care-­system. Accessed 1 Aug 2019. DocCharge. 2018. Medical practice and technology: What no one is talking about. Digital Health Family Practice Hospitalist. https://doccharge.com/blog/medical-­practice-­technology-­no-­one-­ talking/. Accessed 2 Aug 2019. Eakin, P.J. 1999. How our lives become stories: Making selves. Ithaca: Cornell University Press. Frank, Arthur W. 1991. At the will of the body: Reflections on illness. New York: Houghton Mifflin. ———. 1995. The wounded storyteller: Body, illness, and ethics. Chicago: University of Chicago Press. ———. 1997. The wounded storyteller: Body, illness, and ethics. Chicago: University of Chicago Press. Gotlib, Anna. 2015. Feminist ethics and narrative ethics. Internet Encyclopedia of Philosophy. ISSN 2161-0002. http://www.iep.utm.edu/July 2015. Accessed 2 Aug 2019. Haque, Omar Sultan, and Adam Waytz. 2012. Dehumanization in medicine: Causes, solutions, and functions. Perspectives on Psychological Science 7 (2): 176–186. Hoffman, Jan. 2013a. Nightmares after the I.C.U. The New York Times, July 22. https://well.blogs. nytimes.com/2013/07/22/nightmares-­after-­the-­i-­c-­u/. Accessed 4 Aug 2019. ———. 2013b. Diaries from I.C.U. aid mental recovery. The New York Times, July 22. https://well. blogs.nytimes.com/2013/07/22/diaries-­aid-­mental-­recovery/. Accessed 4 Aug 2019. Kleinmann, Arthur. 1988. The illness narratives: Suffering, healing and the human condition. New York: Basic Books. Lindemann, Hilde. 2001. Damaged identities, narrative repair. New York: Cornell University Press.

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———. 2014. Holding and letting go: The social practice of personal identity. New York: Oxford University Press. Meide, Hanneke, Carlo Leget, and Gert Olthuis. 2013. Giving voice to vulnerable people: The value of shadowing for phenomenological healthcare research. Medicine, Health Care, and Philosophy 16 (4): 731–737. Mills, Charles. 2005. Ideal theory as ideology. Hypatia 20 (3): 165–184. Newton, B., L. Barber, J. Clardy, E. Cleveland, and P. O’Sullivan. 2008. Is there hardening of the heart during medical school? Academic Medicine 83: 244–249. Nunes, Paula, Stella Williams, Bidyadhar Sa, and Keith Stevenson. 2011. A study of empathy decline in students from five health disciplines during their first year of training. International Journal of Medical Education 2: 12–17. O’Rourke, Meghan. 2014. Doctors tell all—And it’s bad. The Atlantic. https://www.theatlantic. com/magazine/archive/2014/11/doctors-­tell-­all-­and-­its-­bad/380785/. Accessed 5 Aug 2019. Robeyns, Ingrid. 2008. Ideal theory in theory and practice. Social Theory and Practice 35: 341–362. Sable-Smith, Bram. 2019. Storytelling helps hospital staff discover the person within the patient, NPR. https://www.npr.org/sections/health-­shots/2019/06/08/729351842/storytelling-­helps-­ hospital-­staff-­discover-­the-­person-­within-­the-­patient. Accessed 7 Aug 2019. Shem, S. 1978. The house of God. New York: Dell. Siddique, Ashik. 2013. Traumatized by hospital stay: 1  in 3 patients develop PTSD from ICU. Medical Daily. https://www.medicaldaily.com/traumatized-­hospital-­stay-­1-­3-­patients-­ develop-­ptsd-­icu-­244536. Accessed 7 Aug 2019. US Department of Veteran Affairs. 2018. My life, my story: Advancing the veteran experience. https://www.va.gov/HEALTHCAREEXCELLENCE/news-­room/newsletter/spotlight-­on-­ excellence/2018/special/my-­life-­my-­story.asp. Accessed 9 Aug 2019. Valentini, Laura. 2012. Ideal vs. non-ideal theory: A conceptual map. Philosophy Compass 7: 654–664. Walker, Margaret Urban. 1997. Moral understandings: A feminist study in ethics. New  York: Routledge. White, P. 2008. Knowing body, knowing other: Cultural materials and intensive care. The Sociological Review 56 (2_Suppl): 117–137. https://doi.org/10.1111/j.1467-­954X.2009.0081 9.x. Wright, Kristina. 2018. I had PTSD after a critical illness. Apparently that’s fairly common. Healthline. https://www.healthline.com/health/mental-­health/ptsd-­after-­icu-­post-­intensive-­ care-­syndrome. Accessed 9 Aug 2019. Yeh, C. 2014. “Nothing is broken”: For an injured doctor, quality-focused care misses the mark. Health Affairs 33 (6): 1094–1097.

Chapter 10

“Being at Home”, White Racism, and Minority Health Asha Bhandary

10.1  A Metaphor: Two People Walking Down a Path Robert has a long and fluid stride. He does not contemplate the initiation of his stride, nor does he consciously register where he places his feet. Instead, he walks in an untroubled and unhurried manner, strolling along a path that skirts the river, noting the presence of birds as they roam above him or land on the water, and the rustling of the grasses that line the river. His thoughts roam freely between a theoretical problem that is the focus of his research, a pedagogical question, and an irritating interaction with a colleague. Keara regularly walks the “same” path. The path is the same path in spatial terms, but it is not experientially the same. Instead, Keara finds that balls and rocks are tossed into her path, quite unexpectedly. I use “unexpected” here as a modifier applied to the timing of their arrival. Although she never knows precisely when something will be thrown in her direction, it is not unexpected that something will be thrown in her way at some point while she is walking this path. If Keara does not maintain alertness, these rocks will hit her legs, and she will become injured and bruised. If the rocks are quite small - pebbles, really - they will probably not cut or bruise her, but they may result in minor abrasions or irritations. The rocks are thrown by people who are overtly hostile. The balls that are thrown at her differ from the rocks in their lesser propensity to cause a bruise when they hit her. They also differ in terms of the intentions of the thrower, and the spirit in which they throw these balls. Often, these balls are thrown in a playful spirit, as an invitation to play a game of catch. However, she is usually not interested in playing the game at the times when they are tossed to her, and so these balls, too, are unwelcome interruptions.

A. Bhandary (*) Department of Philosophy, University of Iowa, Iowa City, IA, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 E. Victor, L. K. Guidry-Grimes (eds.), Applying Nonideal Theory to Bioethics, Philosophy and Medicine 139, https://doi.org/10.1007/978-3-030-72503-7_10

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In response to this local environment, Keara shortens her stride, and she does not relax while walking this path. Instead, she keeps herself in an alert state, ready to respond mid-stride when necessary. Correspondingly, Keara’s experience of the path differs entirely from Robert’s experience of it. For Keara, walking the path is not a relaxing interlude in her day. If Keara does not maintain alertness, she will find herself bruised by the rocks hitting her legs. Significantly, it is not the case that she can change the situation by merely changing her outlook. If she fails to maintain alertness, she will be hit by painful objects. This metaphor of walking on a path evokes the contrast between a baseline experience of moving through a social environment that is not hostile to one’s flourishing (for Robert), and the experience of being in a social environment that is hostile to oneself (for Keara).1 The hostility can take many forms such as overt violence and aggression, microaggressions,2 and well-intentioned but unwelcome interruptions (for Keara). It also identifies the interactive nature of experience in social environments. One cannot characterize an environment as a friendly one without indexing that environment to particular individuals within it, where relevant categories for the task of predicting the variability of an environment to an individual are apparent markers of group-based identity factors like race, gender, sexuality, and certain religions, like Muslims in the United States today. I have described Robert’s experience as a presumptive baseline in order to identify what people like Robert may assume it is like to move through the world for everyone, or to walk down a street, and to show that their experience is not the standard experience, but rather, the experience of members of a favored group. Nonideal theory criticizes ideal theory for making the sources and manifestations of oppression invisible (Schwartzman 2016). One of the methodological approaches of ideal theory that can have pernicious results is its atomistic conceptualization of human agency, from which a view about limited responsibility for social patterns usually follows. This background assumption about the unit that serves as the responsible agent makes broad social patterns unidentifiable. In contrast, the effect of social patterns of oppression is the primary subject of feminist ethics and critical race theory, two main domains for nonideal theory. These patterns are essential for explanations of individual action and normative action-guiding recommendations. In addition, a growing body of research about health disparities exposes flaws in an ideal approach to social equality that fails to identify how our bodies are affected by racist and sexist schemas. This article will establish that psychological literature about the negative health effects of stress supplies a clear bridge between social structures and individuals, to yield, ultimately, new actionguiding recommendations about the best responses to microaggressions. The wrongness of the burdens imposed by microaggressions contradict any of a number

1  Hostility, here, is hostility to Keara’s flourishing or hostility to her assertion of equal status, or some combination of the two. The connection between flourishing and its relationship to the social standing of an equal is a question for future inquiry. 2  For a definition of microaggressions, see Sect. 10.2.

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of egalitarianism accounts of a just society.3 Theories grounded in equality should find that differential burdens placed on minority individuals for the activities of daily life are cases of unjustified unequal treatment. A normative commitment to equality then supports the justification to take measures to protect some individuals from these actions, even if microaggressions are unintentional, unconscious, or preconscious action.

10.2  Racism and Microaggressions Non-white persons in the U.S. are subjected to overt acts of racism and microaggressions. Overt acts of racism include the actions of white nationalist parties that claim white superiority and/or perpetrate direct violence against Black, Latino, Native, Muslim, and Asian Americans. Microaggressions differ from overtly racist acts in that they are far more subtle, they are seemingly innocuous, and they are often performed without an explicit intention to harm.4 Microaggressions are like the smaller rocks, pebbles, and even the balls, whereas direct racist acts are both literally and metaphorically a matter of immediate death by an action like shooting a person with a gun or placing a child in a detention center that fails to provide conditions she can survive (Hafner 2018; Stevens 2018; Ove 2019).5 It is morally imperative for these actions to be stopped and redressed  through  legal action. However, because they are philosophically easy cases of wrong actions, this essay sets them aside to focus instead on the more nebulous phenomena of microaggressions. In a recent article, Emily McTernan supplies a definition of microaggressions with three jointly necessary and sufficient conditions: 1 . They are “minor or subtle, such that individually the behaviours seem innocuous”; 2. “The act has to be such that it is plausible that the perpetrator did not intend it to have the effect of degrading or putting down the other.” Some microaggressions can be intentional, but they will be outliers, and 3. “Microaggressions constitute a particular kind of putdown or degradation” (2018, 264–265). McTernan supplies two further characteristics of microaggressions. First, they are committed by members of the dominant group, consequently serving to maintain structurally unjust relations (265). Second, “they can occur only towards members of subordinated groups: those that are oppressed or marginalized” (265). Because 3  McTernan (2018) supplies a relational egalitarian justification for the claim that microaggressions constitute a particular type of injustice. On the value of equality, see Anderson (1999). 4   See Brogaard (2013) for a list of examples of micro-inequities, some of which are microaggressions. 5  For discussion of this issue, see Allison Wolf’s contribution to this volume, “Dying in detention: Where are the bioethicists.”

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this paper’s aim is to characterize the environment in which racial minorities live, I will employ, and not evaluate, McTernan’s definition. The term “microaggression” highlights that these actions are experienced as aggressions by the person on the receiving end of the action, they infringe on a person’s domain of sovereignty, and the infringements are not helpful. For instance, microaggressions commonly experienced by women include a variety of forms of interruption to bodily space and/or to our cognitive attention. The negative effects of the interruptions are not limited to the precise moment of interruption, extending, instead, to a woman developing the reasonable belief that the chances are low that she will be able to finish her sentence when she speaks. Consequently, she may weigh the value of her comment against the possibility that she will have to fight to make the point, and she may ultimately decide, incorrectly or not, that the value of the point is not worth the fight to make it. Interruptions also incur adaptive costs on behalf of the person being interrupted, because the way she continues to speak will depend on whether she needs to parry away interruptions, thereby impeding a steady delivery of her point. The racial minorities who are the target of microaggressions may experience hostility and resistance while performing the activities of daily life. For example, their application for a loan is denied despite their secure employment and excellent credit history; police arrest them while they are taking photographs of public works on the assumption that they are a terrorist; their employer tells them they will never succeed in their attempt to leave their lab to move to a new one; their medical care consistently underrates the severity of their illnesses and pain. When a medical provider prescribes less pain medication for a black woman than she does for a white woman for the same problem, her actions are informed by the implicit false belief that women of color or, more narrowly, African-American women, are more hardy than white women. Subjects who live in racist societies are prone to perpetuate racist norms in the absence of critical awareness of these norms.6 When service providers tender services at a lower level of quality for the minority person while performing to a higher standard for the preferred person, the inequity can only be understood in relation to a relevant comparison class. The accumulation of multiple and systemic instances of different treatment results in micro-inequities. Samantha Brennan defines micro-inequities as “small, unjust inequalities often pointed to as part of the larger story about larger scale inequalities, such as women’s unequal place in the workforce” (Brennan 2016). Differential enforcement is a commonplace kind of micro-inequity, as for example,

6  Here, I make no claims about whether the medical provider has an explicit propositional belief with racist content. Instead, her practical agency has been informed by narratives and norms with content including customary forms of discrimination. In the absence of what Jose Medina calls “meta-lucidity”, it is likely that agents’ actions will perpetuate these cultural norms: “Meta-lucid subjects are those who are aware of the effects of oppression in our cognitive structures and of the limitations in the epistemic practices (of seeing, talking, hearing, reasoning, etc.) grounded in relations of oppression: for example, the invisibilization of certain phenomena, experiences, problems, and even entire subjectivities” (2013, 192).

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when a black man who rides his bike through a stop sign is stopped by a police officer and given a ticket, but a white woman does so without censure. Each microinequity on its own can escape detection and censure by official policies, but they have major effects on a person’s life when they accumulate. The small nature of an individual micro-inequity means that they are difficult to address through formal channels. Brennan states this point in relation to institutional contexts in this way: For practical purposes, in the university and workplace context, I suggest that we think of micro-inequities as inequalities that fall beneath the threshold of legislation or formal actionability. Imagine a person walking into a university equity office and presenting one example of unequal treatment. If that unequal treatment had only small effects and there was only that one instance, it would likely be dismissed as not being, on its own, the sort of thing with which the equity office was charged to deal (Brennan 2016, 6).

I will use the term “microaggression” to characterize the actions of the aggressor. “Micro-inequity” references a broader class of outcomes and locates the state of affairs in relation to that broader pattern, referencing the effect on the individual person, as well. Micro-inequities can occur through passivity, such as the omission of acts that meet a particular standard, whereas microaggressions standardly include the commission of an act. Nonetheless, there are some cases of the omission of an action that qualify as a microaggression. In addition, the distinction between an omission and a commission of an act breaks down in some cases, such as when drivers fail to yield to pedestrians of color in crosswalks at a higher rate than to white pedestrians (Goddard et al. 2014; Coughenour et al. 2017). In these cases, they fail to comply with a law, and the failure to comply is to continue driving rather than to break. These failures to yield can also be fatal. Contrastively, a paradigm case of a micro-inequity that is not a microaggression is the absence of certain merit-based raises in the workplace, which typically occur through the absence of recognition of the value of a person’s contributions, resulting in gendered and racialized patterns of pay disparities (Hegewisch and Hartmann 2019). For the tasks of defining and identifying microaggressions and micro-­ inequities, wider social patterns of inequalities must be identified in order to comprehend the significance of the individual instance. These broad-based patterns, such as high rates of incarceration of African-Americans, are then needed as a parsing filter with which to interpret the ramifications of individual actions. Therefore, possible cases of microaggression must be assessed against a relevant comparison class. Although I employ the concepts microaggressions and micro-inequities, the aim of this paper is not to critically engage with existing definitions or to determine when an aggression and an inequity crosses from being “micro” to being “macro” in scale. Nor do I aim to assign blame to the individuals perpetrating these acts or to offer normative guidance for anti-racist white Americans.7 I am also not concerned

7  For a classic article about white privilege, see Bailey (1998). See Alcoff for the argument that whites who work against racism are activists in their own right, and not merely allies (2015, 204).

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with identifying the mechanisms of implicit bias.8 Finally, my approach here differs from a focus on institutions and social structures, although I endorse the view that we must understand social structures if we are to understand individuals’ contributions to systems of racism and sexism (Frye 1983; Jaggar 1983; Held 1984; Meyers 1989; Okin 1989; Schwartzman 2006; Haslanger 2015). Instead of seeking to intervene in these other vital areas of inquiry, the target of this paper is to characterize the effects on minorities of the environments in which we live.9 When the experience of the minority person is the primary subject, the urgent issue becomes one of identifying action-guiding recommendations that might mitigate the negative effects of racism on minorities. The agents toward whom this normative evaluation is addressed, therefore, are the minority persons who are subjected to these actions, and not the people who may be perpetrating them. Ultimately, we will see that the burdens to physical health experienced by racial minorities in the U.S. are sufficient to justify selective and episodic separatism from the sources of microaggressions and hostility.

10.3  Microaggressions’ Contribution to Stress A key premise in my argument is the claim that members of some groups experience environments with increased interruptions and hostility, resulting in an additional burden for the tasks of daily life. In the first paper to employ and define the term “microaggressions”, psychiatrist Chester Pierce describes microaggressions as the worst mechanism of racism and sexism. Pierce writes: Perhaps the most grievous of offensive mechanisms spewed at victims in racism and sexism are microaggressions. These are subtle, innocuous, preconscious, or unconscious degradations, and putdowns, often kinetic but capable of being verbal and/or kinetic. In and of itself a microaggression may seem harmless, but the cumulative burden of a lifetime of microaggressions can theoretically contribute to diminished mortality, augmented morbidity, and flattened confidence (Pierce 1995, 281).

Additional research by psychologists and public health scholars establishes relationships between discrimination, microaggressions, minority status, stress, and health. Interestingly, part of the damage of microaggressions may be due to the unpredictability of hostility, because stressors that are unpredictable can have a more damaging effect on a person than a stressor that is continuous and predictable.10 8  There is a vast literature about the epistemic and ethical implications of implicit bias. For a survey, see Brownstein (2017). 9  For a similar strategy that focuses on the effects of the targeted class rather than the motivations of the perpetrators of harm, see Kate Manne’s (2018) account of misogyny. 10  This connection has been proven, at least in the case of noise as a stressor. “As Glass and Singer (1972) demonstrated clearly in the case of noise, an unpredictable stressor entails greater adaptational costs upon the individual experiencing it in terms of behavioural aftereffects than predictable or controllable stressors” (from Dion et al. 1992, 518).

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Early work in psychology found that minority status itself is a stressor (Moritsugu and Sue 1983). Moritsugu and Sue define minority status as contrastive with majority status. Minority status is simply “the lack of membership in the prevailing group” (1983, 162). According to their abstract and structural definition of minority status, it is not the particular group or identity that makes a person a minority. It is, instead, its relational status. Moritsugu and Sue’s structural concept for “minority” includes that minority status “might be statistically, politically, psychologically (that is, an individual’s perception of him- or herself in comparison to others), or structurally determined, so long as the result is a common perception of the minority members as existing outside the dominant social structure” (1983, 162–163). Moritsugu and Sue’s claim is that being a minority - in a sense that is relationally indexed to one’s society – is the stressor. According to this definition of “minority”, it does not pick out any particular ascriptive identity group by, for instance, skin color. Minority status is determined by one’s self-understanding as outside the dominant group. Additional research about ethnic minorities has shown that minority status is accompanied by an increased risk for mental health disorders.11 Finally, Shannon Sullivan’s important work in bioethics and critical race theory highlights that the negative effects of racism on African-American women’s bodies can have transgenerational effects (Sullivan 2013). Taken as a whole, these studies show that minority status, understood structurally, is a stressor; that racism is a stressor for racial groups that harms their physical and mental health; that gender-­ based discrimination is also a stressor with negative health outcomes for women12; and that unpredictable stressors cause greater adaptive costs, where microaggressions are an unpredictable stressor. Consequently, microaggressions and other forms of discrimination can incur costs to a person’s body. The costs are contrastive with the experience of feeling praised and affirmed. Citing Rollin McCraty and Doc Childre’s (2004) account of the psychological effects of appreciation, Sullivan reports that a highly ordered and smooth heartrate “tends to occur when a person feels a positive emotion such as appreciation” (Sullivan 2015, 140). Microaggressions have the opposite effect, and the phenomenon of the negation of appreciation is famously described by George Yancy’s account of the “clicks” of car doors locking as he, a black man, walks past them (Yancy 2012, 33). Because the effects of racism are not confined to one’s own generation, extending to the next generation through higher preterm birth rates, the need to combat the negative effects of racism is urgent.

 In Hahm, Ozonoff, Gaumond, and Sue’s (2010) study of the effects of discrimination on Asian-­ Americans, they found that “a high level of discrimination was associated with negative mental and physical health outcomes for both women and men”, but those women had worse outcomes in response to a lower threshold of perceived discrimination than men did. The connection between stress and depression has also been supported by studies of immigrant communities (Aroian and Norris, 2000). 12  For a study on the effects of social stressors on women’s bodies that evaluates gender-based discrimination outside the U.S., in India, see Baker et al. (2018). 11

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10.4  Ideal and Nonideal Theory The concerns I have outlined thus far show that microaggressions are ethically significant in part because they harm the bodies of the people toward whom they are directed. In addition, proposals for integration and racial justice that fail to pay attention to the harm perpetrated against minorities’ health can result in even greater burdens on the very people who would be the purported beneficiaries of the non-­ racist society. They do so by increasing the exposure of minorities to the perpetrators of microaggressions. These approaches are therefore aptly criticized as the form of ideal theory Charles Mills inveighs against as ideological: Ideal theory, I would contend, is really an ideology, a distortional complex of ideas, values, norms and beliefs that reflects the nonrepresentative interests and experiences of a small minority of the national population – middle-to-upper-class white males- who are hugely over-represented in the professional philosophical population (Mills 2005, 172).

Although I agree with Mills that nonrepresentative concerns are too often used to characterize people about whom they do not apply, I think it is also fruitful to disentangle a number of distinct questions that are sometimes bundled together in debates about ideal and nonideal theory.13 Ideal theory is generally characterized by limited fact-sensitivity and reliance on a set of core abstract concepts, such as John Rawls’s (1999) conceptualizations of persons as ideally rational and fully able-­ bodied.14 Nonideal theory criticizes ideal theory for failing to offer recommendations to improve the world in which we actually find ourselves today. Nonideal theorists also criticize ideal theorists for making ideological claims (Mills) or for relying on descriptions that are purportedly neutral or universal, when they are in fact quite particular to the life experiences of a small number of people. Lisa H. Schwartzman perhaps best frames the nonideal criticism of ideal theory as fundamentally a problem of misrepresentation: “[ideal theory] misrepresents both agents and structures in ways that deny and obscure the realities of oppression” (2016, 7). Consequently, the sources, manifestations, and effects of racism and sexism are usually obscured by ideal theoretical approaches. The desiderata of identifying the sources of oppression can also be met by what I call “nonideological ideal theory” (Bhandary 2017, 5), which is ideal theory that seeks to undo sexist and racist ideologies.

 For a systematic normative review of the contested methodology employed by ideal and nonideal theorists, see my student Laura Brown’s dissertation (in progress), “Mediated ideal theory.” 14  Amartya Sen criticizes an overemphasis in political philosophy on the definition of perfectly just social arrangements, which is an approach he calls “transcendental institutionalism” (2009, 7–8). 13

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10.4.1  Being at Home One consequence of microaggressions is that they make it more difficult for the target to feel at ease in their social environment. Let us call the feeling of being at ease in one’s environment “being at home.” I first introduced the idea of “being at home” as a concept for a theory of justice that explains why some people resist changes to achieve gender justice (Bhandary 2020, 180). The state of being at home is almost universally valued. It is not a passive state of affairs that identifies a mere match between one’s culture and oneself. Instead, it is a state of affairs that is achieved through the dynamic interaction of a person with their social environment and intimate others. It includes our cherished relationships, and it is also influenced by the ease with which a person can access other fundamental goods. Culture supplies the social significance of actions and ways of life, and thereby mediates between individual persons and the bare bones of the distributive arrangement. To be at home in the world, a person does not need a static culture, but they do need to have some valued relationships with others and a level of intelligibility that is a relation between the person and culture. To the extent that the people with whom they have relationships are inflexible in their understanding of the meanings of actions, changing actions will face greater resistance and possible damage to those relationships. Although I initially embedded the value of being at home in an account of justice that I call “liberal dependency care”, which includes elements from both ideal and nonideal theory (2020), the concept of being at home should also be employed as a concept for nonideal bioethics because it identifies a state of affairs experienced by an individual but dynamically constituted by the external environment. In particular, employing the idea of “being at home” as a framing principle with which to understand microaggressions enables us to identify how we can combat racism. When a person feels at home in the world, they can relax, expect predictability and regularity in the actions of others, and feel safe and at ease. The related social ideal is a society in which everyone feels at home. The state of being at home is maintained through relationships, autonomy competency, affordances and broader social norms and narratives (Bhandary 2020, 18). It is this state that is the aim, and it can be achieved in many different ways. Although “being at home” has value to everyone, how a person lives such that they feel at home will be highly variable. In the table below, I identify a set of parameters according to which the recommendation of this paper contributes to nonideal theory. The purpose of the table is to identify the methodological terrain traversed by my argument and to articulate some clarifying contrasts between ideal and nonideal theory. My argument about microaggressions characterizes a widespread phenomenon in the world, and offers an action-guiding recommendation that is based on the assessment that the interests of minority persons are morally weighty. The approach of this paper can be accurately characterized as a combination of nonideal theory and what I call nonideological ideal theory (Bhandary 2017, 5), which specifies that uses of ideal theory must seek to avoid the ideological occlusion of facts resulting from the existence of oppression (Table 10.1).

Yes

O’Neill (1996) argues for the need for abstractions that are nonidealizing. Mills (2005) agrees that all theory requires the bracketing of some facts. Schwartzman (2006) criticizes abstraction for misrepresentation.

No

Yes, ideal theory employs abstractions. Stark (2010) argues that abstraction in justification does not imply abstraction in implementation.

Assumes that some people will fail to comply with moral principles and with principles of justice.

3. Action-guiding recommendations that are achievable and desirable (Stemplowska 2008) 4. Employs abstractions

2. Compliance

Nonideal theory Nonideal theory seeks to be maximally fact- sensitive (Farrelly 2007; Sen 2009).

Ideal theory Principles of justice and equality should be fact-insensitive (Cohen 2008); John Rawls’s (1999) theory of justice is moderately fact sensitive but his core contract device is characterized as a form of ideal theory. Strict compliance with principles of justice.

Characteristic 1. Fact-sensitivity

Table 10.1  Nonideological ideal theory and action-guidance for a nonideal world

It does not assume strict compliance with principles of justice, but rather, evaluates people’s actual actions and identifies a motivation that may push us away from perfect justice. I recommend episodic and selective separatism as the most achievable and desirable recommendation to diminish the deleterious health effects of racism. The idea of “being at home” is an abstraction in the sense that any concept is an abstraction. It is characterization of a desired state of affairs. However, it is also informed by psychological research about real people.

The argument of this paper, including the concept being at home, the use of empirical premises, and the defense of separatism The justifying premises have robust fact-sensitivity.

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Ideal theory Typically describes people as ideally rational and fully able-bodied, but fails to address many of the ways in which our cognition and perception are shaped by the world around us.

Mills defines the Rawlsian contract as ideological, and as perpetuating privilege in virtue of the theoretical apparatus.

Sen and Mills fault Rawls and Rawlsians for paying too much attention to ideal theory and leaving unjust arrangements untouched and undertheorized.

Characteristic 4. Idealizations (describing people as better than they are, or with idealized capacities)

5. Effects on oppression and privilege

6. Division of labor among philosophers (Sen 2009; Mills 2005)

Seeks to mitigate the effects of oppression on minority persons but does not purport to address the sources of oppression or to offer moral censure for perpetrators of oppression. The defense of separatism is justified Feminist bioethicists and critical race theorists have led the project. The fields by a non-ideological interpretation of of psychology and public health are also empirical data and the values of fairness and justice. important sources of empirical data to inform nonideal bioethics’ actionguiding recommendations.

Nonideal theory Disability theory and vulnerability theory seek to describe human beings. Feminists and critical race theorists are nonideal theorists in the sense that we describe the world with these features, and their sources and effects on real persons. Mills’s “domination contract” takes the facts of racism and sexism as starting points (2007).

The argument of this paper, including the concept being at home, the use of empirical premises, and the defense of separatism Shares the nonideal characterization of people as human beings, not mere rational beings. 10  “Being at Home”, White Racism, and Minority Health 227

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10.5  H  ow Minority Persons Should Respond to Microaggressions Despite the fact that microaggressions can physically harm a person more than acts we associate with a folk conception of violence, such as being punched or stabbed with a knife, self-defense against microaggressions should take a different form than the forms of combat that might be effective in the case of direct physical violence. Because the corporeal and psychological state of being prepared to combat the harmful effects of microaggressions constitutes one of the primary harms of microaggressions, a stance of readiness is not the best response to microaggressions. To achieve the aim of a just society, additional efforts to remedy injustice will be necessary. In the shorter term, though, the person who is the “victim” of these microaggressions should take measures to protect themselves. The physical harm incurred by minorities means that it is a pressing matter to devise strategies that will protect the bodies of the people who are currently alive from further ill effects of microaggressions. In the metaphor of Keara walking down a path, she might don a technologically sophisticated bodysuit that serves as a bubble. Alternatively, walking surrounded by others can also insulate her from the attacks, either because people will not throw rocks at her (if they are members of the majority), or because the rocks will hit the people on the outside of the group (if they are minorities). Another alternative is for Keara to take another path. If no other path exists, she may need to construct it. In the case described above, the new path would have to be built in a way that excludes or prevents the perpetrators of these microaggressions from populating it, which translates in the real world into varieties of separatism that limit who can access the space. People who are habitually subjected to microaggressions should remove themselves from the interactive situation in which they must maintain readiness to parry away an attack. In this environment, if someone throws a ball, they will know that it is to and not at them, and they can enjoy a leisurely game of catch.15 The nonideal theorist who seeks to offer achievable and desirable action-guiding recommendations must give substantial weight to the damage done to a person’s body by an environment that is hostile to them. From the desiderata of protecting and promoting the health of the individual who is the victim of microaggressions, there is a prima facie justification for avoiding contact with the sources and spaces where it is most likely that microaggressions will be perpetrated. For instance, because the phenomena of racism and sexism in the U.S. are well documented social facts, African-Americans and other social groups who experience regular  In her essay about “world-traveling”, Lugones (1987) defends the view that she has different selves in different contexts in relationships. She explains that she is, in fact, a playful person with her friends and family. In other contexts, though, such as in the professional world of philosophy, she is not at all playful. Preserving one’s health, though, is not always the prevailing aim. As Lugones’s discussion of being a pioneering woman of color in the traditionally white and male field of philosophy demonstrates, sometimes individuals forego their own health to create a better world or to pursue other personal goals.

15

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forms of discrimination are justified in preserving spaces for the people who will not perpetrate racist acts, overt or covert. Arguments that every space should be open to everyone deny the health needs that are caused by microaggressions. Within African-American thought, separatism has competed with assimilationist or integrationist views, but an ethnic or racial separatism that takes a mixed population and separates it into distinct states will encounter the problem of racial essentialism.16 The kind of separatism I defend in the context of racism in the United States, though, is not the separatism of an entire nation, but rather, selective spaces created by minorities for ourselves. Real-world examples of episodic and voluntary spaces and practices abound, such as ethnic theme dorms on college campuses, women’s centers, and cities where being an LGBTQ person is the dominant identity. Ethnic neighborhoods can be another form of voluntary separatism. Spatial and physical separatism may include separate neighborhoods, as well. Adopting this separatist strategy is a matter of attempting to be surrounded by people who will not perpetrate violence against us. This is the most important domain for separatism, because it is most difficult to insulate oneself from microaggressions by people who are physically proximate. Virtual online spaces, too, can give people a way to share experiences with other members of their group, thereby gaining knowledge of the patterns of behavior that are exhibited toward them. This knowledge can facilitate realistically navigating their physical workplace or neighborhood.17 Although separatism is morally justified for members of minority groups, individuals should assess the details of their life circumstances to evaluate when, and whether, to engage in separatist behaviors and practices. Some separatist behaviors may include refusing the gestures of interpersonal recognition to a microaggressor. Caution may be prudential, though, because when someone rejects a social script to defer to members of a majority, negative repercussions, including violence, may ensue. Moreover, as long as these majority persons retain power, the negative effects of separatism will include a lack of access to networks of power; the episodic nature of the separatism I recommend seeks to mitigate this potential problem. Selective and episodic separatism also avoids the expansion of a particular form of white upper-middle class culture into all spaces and subcultures of the U.S. For this reason, Sullivan argues the best approach for anti-racist whites is sometimes to simply leave non-white people alone (2006, 180). The difference between voluntary separatism by the people being discriminated against and a “whites-only” neighborhood in the US is that minorities are not perpetrating daily violence against whites in the US.  Separatism is justified as a response to the ongoing violence against members of that group, so that a presumption in favor of openness is defeated in these cases. Self-care and care of the body will include insulation from perpetrators of microaggressions for minority persons. The urgency of these health interests means that

 For discussion, see Boxill (1997) and Mills (1998, 172).  On the phenomenon that women of color have to guard against the specter of paranoia in relation to real and imagined microaggressions, see Fatima (2017).

16 17

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minority persons should share knowledge about persons to avoid. Doing so may include informal forms of knowledge sharing about the businesses and service providers who do and do not perpetrate such harms. A crucial strategy for self-care of minorities living in racist societies is the insulating effect of selective separatism, which is therefore properly understood to be a component of the radical self-care Audre Lorde (1988) recommended for women of color. Anti-racist policies should also seek to address the bodily impact of racism by not infringing on leisure with, for example, mentoring programs that take the time and energy of minorities to endure the enactment of “white saviorism” (Cole 2012).18 My defense of selective separatism should be distinguished from defenses of cultural minority group rights, which usually rely on the significance of culture to a person’s identity, and the concomitant harms of misrecognition in a state that does not recognize one’s cultural or ethnic identity (Taylor 1992). The defense of separatism in this paper relies solely on the prevention of the harms to health caused by discrimination and microaggressions. Finally, one must note that separatist spaces are not a panacea. In every space populated by human beings, we can expect that power inequalities and abuses of power may occur. Therefore, intentional separatist spaces and practices must continue to be internally critical. Nonetheless, separatism has short term positive effects that could be life preserving for minority individuals and the generations that succeed them.

10.6  O  n the Limitations of Health Disparities as a Proxy for Levels of Overall Inequality Black and white comparisons of racial differences in health tell a story of persistent inequality.19 Consequently, nonideal theorists of justice should pay greater attention to health disparities, and, as an indicator of broader social inequality, to the diseases to which stress contributes. Shannon Sullivan argues that disparities in black-white health outcomes should be interpreted as examples of people who are white receiving systematic health benefits due to their race (2015, 134). Despite the importance of the disparities as an indicator of racism, philosophers concerned with social inequality cannot take disparities in health to be a measure of the precise magnitude of the microaggressions to which a person is subjected because people can employ strategies to combat the negative effects of the stressor. Many people who regularly face hostile environments utilize strategies to regain equilibrium and sustain nourishing relationships. Moreover, subordinated groups often have practices of resilience and sustenance embedded into their cultural fabric. Psychological

 For further explanation of Teju Cole’s term “white savior industrial complex”, see Aronson (2017).  See The National Urban League’s “State of Black America 2018 black-white equality index” report, which shows that African-Americans’ overall health, measured to include life expectancy, access to care, and a range of common diseases, is 79.3% that of white Americans (7).

18 19

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research about resilience and the significance of supportive relationships points to additional ways that individuals can dynamically respond to hostile environments (Mullings 2006). And, as autonomy theorist Diana Tietjens Meyers has argued, women can employ agentic skills to combat subordinating gender schemas (2002). Therefore, health statistics should not be interpreted as revealing a picture of static individuals being acted upon by the world, for people interact with their environments and sometimes even alter major institutions in their social forms. Consequently, the injustice of microaggressions cannot be measured with any precision because how people respond to them, individually and collectively, will mitigate their effects. Group-based disparities in some types of disease can offer an approximation of inequalities in who attains the state of “being at home,” but they cannot give us a precise account of the magnitude of hostility faced by members of minority groups due to a variety of individual and group-based strategies for coping and resilience that can be deployed to partially combat the insidious effects of racism. Nonetheless, there is a strong prima facie case for individuals to simply remove themselves from the locations and people most likely to perpetrate these harms. When the perpetrators are racist, then ethnic enclaves could be supported by public policy that is informed by nonideal theory. Therefore, health policy that is informed by the imperative from nonideal theory, which requires that we attend to the sources and effects of oppression20 should support spaces for relationships that are sustaining. Correspondingly, members of subordinated groups should be counseled to be selective about the extent to which we expose ourselves to individuals who perpetuate microaggressions. Of course, there are a range of pragmatic limitations. For instance, a person of color living in a region with very few minorities may be more constrained, and may bear greater negative physical health effects, than a person living in a diverse and cosmopolitan city. Moreover, choices about whether to protect one’s health from microaggressions  by, for example,  one’s supervisor, may need to be weighed against the negative health effects that would result from not having a job, or the stress of finding a new job. Sometimes the burdens of finding work in a region that is less racist might be less significant than the long-term health effects of living in a racist region, particularly without the safety of a separatist space. Because of these multiple variables, the resultant action-guiding recommendation is simply that minorities should attend to the health costs of remaining in  locations and contexts where microaggressions make daily life difficult. This factor should be included in each individual’s overall assessment of their life stressors. The variety of separatism I endorse is selective, voluntary, and episodic. By selective, I mean that people will identify the subgroup that is relevant in a particular context. No one should be forced to engage in groups and practices that are centered around a particular subordinated identity, and the relevant identities can be mutable, changing over time and across context.  The episodic nature of the separatism I recommend allows people to enter into discussions and spaces designed for

20

 For this interpretation of nonideal theory, see Mills (2005) and Schwartzman (2016).

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minorities but also to move through a range of social contexts that are comprised of different populations, including close family relationships with people from other groups. The separatism I endorse does not require a test to determine whether a person counts as a member of the group, and thereby avoids relying on an essentialist view about ethnic or racial identity. In this essay, I have not defended legal measures, either, but the principle of freedom of association supplies ample support for voluntary and episodic selective forms of association. A practical challenge for separatism arises when a person who is hostile to the group seeks to “invade” it. The best response to these attempted invasions will be context-dependent. The health-based argument for separatism that I have defended here is a moral one, and its weight should be sufficient for at least anti-racist allies and activists to take measures to avoid infringing on these separatist spaces. Furthermore, in light of these health-based costs, it would contravene fairness to ask members of these groups to educate members of the dominant majority group. In contrast, a legitimate difficulty for these separatist practices arises when a person seeks to be a member of the group, but they habitually and unwittingly perpetrate microaggressions in that space. In this case, the educational labor required to empower the person to stop their microaggressions might be justified if the person’s desire to be an ally or an activist is genuine and revealed through an earnest effort to listen and to learn. If a minority person takes on this labor, though, it is supererogatory, and the educating role can be terminated at any time that the attempted ally insists on perpetrating microaggressions. However, if, for instance, a white woman has a position of power or authority in relation to a woman of color, then terminating that relationship can result in other deleterious effects, and nonideal action-guiding recommendations must incorporate the risks and multiple forms of violence that are expressed when people fail to comply with customary norms. Consequently, although I have shown that there is a strong health-based argument for minority group ethnic or racial separatism, I have not offered an all-things-­ considered defense of robust separatist practices. In the long-term, increased separatism may create greater animus through a lack of understanding. My argument defends separatism’s value to minority persons based on health, contending that the damage caused by microaggressions is substantial enough to warrant action. Recognizing that social environments influence individual bodies, I have recommended selective and episodic separatism from the perpetrators of microaggressions as a viable health-protective response to the realities of living in a nonideal world, with the hope that minority persons can be at home in their social world, for at least some amount of time. Acknowledgments  Although the views here are entirely my own, and not necessarily endorsed by any of my interlocutors, my thinking about this topic has benefitted from conversations with a community of women of color faculty at the University of Iowa, the Association for Feminist Ethics and Social Theory’s conferences, and the 2019-2020 Imagining Latinidades Sawyer Seminar working group. I thank Elizabeth Victor and Richard Fumerton for their valuable comments on a written version of this paper and Elizabeth Zupancic for research assistance.

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References Alcoff, Linda. 2015. The future of whiteness. Cambridge: Polity. Anderson, Elizabeth. 1999. What is the point of equality? Ethics 109 (2): 287–337. Aroian, Karen J., and Anne E.  Norris. 2000. Resilience, stress, and depression among Russian immigrants to Israel. Western Journal of Nursing Research 22 (1): 54–67. Aronson, Brittany A. 2017. The white savior industrial complex: A cultural studies analysis of a teacher educator, savior film, and future teachers. Journal of Critical Theory and Praxis 6 (3): Article 3. Bailey, Alison. 1998. Privilege: Expanding on Marilyn Frye’s ‘Oppression’. Journal of Social Philosophy 29 (3): 104–119. Baker, K.K., W.T. Story, E. Walser-Kuntz, and M.B. Zimmerman. 2018. Impact of social capital, harassment of women and girls, and water and sanitation access of premature birth and low infant birth weight in India. PLoS One 13 (10). https://doi.org/10.1371/journal.pone.0205345. Bhandary, Asha. 2017. The arrow of care map. Feminist Philosophy Quarterly 3 (4): Article 5. ———. 2020. Freedom to care: Liberalism, dependency care, and culture. New York: Routledge. Boxill, Bernard. 1997. Two traditions in African American political philosophy. In African-­ American perspectives and philosophical traditions, ed. John Pittman. New York: Routledge. Brennan, Samantha. 2016. The moral status of micro-inequities: In favor of institutional solutions. In Implicit bias and philosophy, Volume 2: Moral responsibility, structural injustice, and ethics, ed. Michael Brownstein and Jennifer Saul. Oxford: Oxford University Press. Brogaard, Berit. 2013. Micro-inequities: 40 years later. Psychology Today (April 20). Brownstein, Michael. 2017. Implicit bias. The Stanford Encyclopedia of Philosophy. (Spring 2017 Edition), Edward N.  Zalta (ed.), URL = https://plato.stanford.edu/archives/spr2017/entries/ implicit-­bias/ Cohen, G.A. 2008. Rescuing justice and equality. Cambridge: Harvard University Press. Cole, Teju. 2012. The white savior industrial complex. The Atlantic, March 21. Coughenour, C., S. Clark, A. Singh, E. Claw, J. Abelar, and J. Huebner. 2017. Examining racial bias as a potential factor in pedestrian crashes. Accident Analysis & Prevention 98: 96–100. https://doi.org/10.1016/j.aap.2016.09.031. Dion, Kenneth L., Karen K.  Dion, and Anita Wan-Ping Pak. 1992. Personality-based hardiness as a buffer for discrimination-related stress in members of Toronto’s Chinese community. Canadian Journal of Behavioural Science/Revue canadienne des sciences du comportement 24 (4): 517–536. Farrelly, Colin. 2007. Justice in ideal theory: A refutation. Political Studies 55 (4): 844–864. Fatima, Saba. 2017. On the edge of knowing: Microaggressions and epistemic uncertainty as a woman of color. In Surviving sexism in academia: Feminist strategies for leadership, ed. Kirsti Cole and Holly Hassel, 147–154. New York: Routledge. Frye, Marilyn. 1983. The politics of reality. Trumansburg: The Crossing Press. Goddard, Tara, Kimberly Barsamian Kahn, and Arlie Adkins. 2014. Racial bias in driver yielding behavior at crosswalks, NITC-SS-733. Portland: Transportation Research and Education Center (TREC). https://doi.org/10.15760/trec.130. Hafner, Josh. 2018. Police killings of black men in the U.S. and what happened to the officers. USA Today, March 30. Hahm, H.C., A.  Ozonoff, J.  Gaumond, and S.  Sue. 2010. Perceived discrimination and health outcomes: A gender comparison among Asian-Americans nationwide. Women’s Health Issues 20: 350–358. Haslanger, Sally. 2015. Distinguished lecture: Social structure, narrative and explanation. Canadian Journal of Philosophy 45 (1): 1–15. Hegewisch, Arianne and Heidi Hartmann. 2019. The gender wage gap: 2018. Earnings difference by race and ethnicity, fact sheet. Institute for Women’s Policy Research, March. Held, Virginia. 1984. Rights and goods: Justifying social action. Chicago: University of Chicago Press.

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Jaggar, Alison M. 1983. Feminist politics and human nature. Maryland: Rowman and Littlefield. Lorde, Audre. 1988. A burst of light: Essays. Ithaca: Firebrand Books. Lugones, Maria. 1987. Playfulness, “world”-travelling, and loving perception. Hypatia 2 (2): 3–19. Manne, Kate. 2018. Down girl. New York: Oxford University Press. McCraty, Rollin, and Doc Childre. 2004. The grateful heart: The psychophysiology of appreciation. In The psychology of gratitude, ed. Robert A.  Emmons and Michael E.  McCullough, 230–256. New York: Oxford University Press. McTernan, Emily. 2018. Microaggressions, equality, and social practices. Journal of Political Philosophy 26: 261–281. Medina, Jose. 2013. The epistemology of resistance. New York: Oxford University Press. Meyers, Diana Tietjens. 1989. Self, society and personal choice. New  York: Columbia University Press. Mills, Charles W. 1998. Blackness visible: Essays on philosophy and race. Ithaca/London: Cornell University Press. ———. 2005. “‘Ideal theory’ as ideology”. Hypatia 20 (3): 165–84. ———. 2007. The domination contract. In Contract and domination, ed. Carole Pateman and Charles Mills. Cambridge: Polity Press. Moritsugu, John, and Stanley Sue. 1983. Minority status as a stressor. In Preventive psychology theory, research and practice, ed. R.D. Felner, L.A. Jason, J.N. Moritsugu, and S.S. Farber, 162–175. New York: Pergamon. Mullings, Leith. 2006. Resistance and resilience. In Gender, race, class and health: Intersectional approaches, ed. Am J. Schulz and Leith Mullings, 345–370. San Francisco: Jossey-Bass. Okin, Susan Moller. 1989. Justice, gender and the family. New York: Basic Books. O’Neill, Onora. 1996. Towards justice and virtue. Cambridge: Cambridge University Press. Ove, Torsten. 2019. Robert bowers, accused in tree of life synagogue shootings, arraigned. Pittsburgh Post-Gazette, February 11. Pierce, Chester. 1995. Stress analogs of racism and sexism. In Mental health, racism, and sexism, ed. Charles V. Willie, Patricia Perri Rieker, Bernard M. Kramer, and Bertram S. Brown, 277–293. Pittsburgh: University of Pittsburgh Press. Rawls, John. 1999. A theory of justice. Rev ed. Cambridge: Belknap Press. Schwartzman, Lisa. 2006. Abstraction, idealization, and oppression. Metaphilosophy 37 (5). ———. 2016. Action guidance, oppression, and nonideal theory. Feminist Philosophy Quarterly 2 (1). Sen, Amartya. 2009. The idea of justice. Cambridge: Belknap Press. Stark, Cynthia. 2010. Abstraction and justification in moral theory. Hypatia 25 (4): 825–833. Stemplowska, Zofia. 2008. What’s ideal about ideal theory? Social Theory and Practice 34 (3): 319–340. Stevens, Matt. 2018. Kansas man who fatally shot Indian immigrant gets life in prison. New York Times, May 5. Sullivan, Shannon. 2006. Revealing whiteness: The unconscious habits of racial privilege. Bloomington: Indiana University Press. ———. 2013. Inheriting racist disparities in health: Epigenetics and the transgenerational effects of white racism. Critical Philosophy of Race 1 (2): 190–218. ———. 2015. The physiology of sexist and racist oppression. New York: Oxford University Press. Taylor, Charles. 1992. The politics of recognition. In Multiculturalism and the politics of recognition, ed. Amy Gutmann. Princeton: Princeton University Press. The National Urban League. 2018. State of Black America 2018 black-white equality index. New York: National Urban League Publication. Available at https://soba.iamempowered.com/ sites/soba.iamempowered.com/files/SOBA2018-­Black-­White%20Index.pdf Yancy, George. 2012. Looking at whiteness: Tarrying with the embedded and opaque white racist self. In Look, a White!: Philosophical essays on whiteness. Philadelphia: Temple University Press.

Chapter 11

Black and Sleepless in a Nonideal World Keisha Ray

In America, Black people’s health is overall worse than white people’s health.1 This disparity in health has been attributed to differences in various social determinants of health, including, but not limited to differences in wealth, education, social environments, and provider bias (Matthew 2015). There are racial disparities in low birth rates (Fiscella et al. 2008), diagnoses of Post-Traumatic Stress Disorder (PTSD) and schizophrenia (McGuire and Miranda 2008), and maternal deaths (Tucker et  al. 2007), among many others with Black people (along with some other racial minorities) faring worse than white people. Another racial disparity in America that finds Black people on the losing end is sleep sufficiency. When people do not sleep for the recommended number of hours and/or have low sleep quality than what is needed for health and wellbeing they are experiencing sleep insufficiency or sleeplessness. In the United States, Black people2 sleep a lot less than white people (Hale and Phuong Do 2007; National Sleep Foundation 2019b; Nunes et al. 2008; Patel et al. 2010; Ruiter et al. 2011). This is especially problematic because a lack of sleep is

1  In some instances Black people as well as Hispanic people and American natives’ health is far worse than white people’s health. In some instances Black people are not the worse off when compared to other people of color. This is the case with medical insurance coverage and its benefits. Hispanic and American natives are less likely to have medical insurance than Black and white people (Williams et al. 2010). However, in this paper I focus on Black people’s health. 2  Since this paper heavily relies on epidemiology literature and most research on sleep uses the terms “Blacks” and “whites” I will also use these terms, however, to keep the integrity of the research used in this paper, when referring to specific research I will use the racial terms used in that particular research.

K. Ray (*) University of Texas Health Science Center at Houston, McGovern Center for Humanities and Ethics at McGovern Medical School, Houston, TX, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 E. Victor, L. K. Guidry-Grimes (eds.), Applying Nonideal Theory to Bioethics, Philosophy and Medicine 139, https://doi.org/10.1007/978-3-030-72503-7_11

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connected to health deficiencies that are also disproportionately experienced by Black people. Most scholars do not attribute this disparity to biology, but rather to greater social deficiencies experienced by Black people. For instance, more Black people than white people live in noise and crime filled neighborhoods, have less access to recreation areas such as parks and running trails, and less access to stable jobs and proper housing. These social factors along with cultural malaises such as racism can have a significant impact on the quality of sleep many Black people receive. In response to sleeplessness agencies such as the Center for Disease Control and Prevention (CDC) and the National Sleep Foundation (NSF) have developed sleep hygiene. Sleep hygiene is a series of tips that target individual behaviors that prevent restful and prolonged sleep, such as avoiding naps during the day or only using your bed for sleep or sexual activity. In this paper I primarily use the work of Charles W.  Mills to argue that sleep hygiene reflects an ideal theorizing of sleeplessness, namely that it is within the powers of people who cannot sleep to change those behaviors that make sleep elusive. Sleep hygiene, however, as an example of ideal theorizing does not account for the social histories and policies of American institutions that contributed to racial disparities in sleeplessness. I argue that sleep hygiene cannot help many Black people who experience sleeplessness because it does not address their disproportionate experiences with social deficiencies that contribute to their sleeplessness. Instead, I argue that because nonideal theorizing begins from a place of examining the actual policies of social institutions, including how those policies disproportionately affect women, people of color, and the poor, nonideal theorizing allows us to discuss racial disparities in sleeplessness in a more enriching manner, including remedies that don’t focus solely on personal behaviors. Nonideal theory also shows us just how inefficient, reckless, and unhelpful sleep hygiene can be to Black people whose lack of sleep is not because of poor personal behavioral choices, yet sleep hygiene makes sleeplessness a personal failure. In this paper I will first discuss why racial disparities in sleep sufficiency are an issue of justice and worthy of bioethicists’ attention. Next, I discuss the details of sleep hygiene. I then argue that sleep hygiene is an example of ideal theory, and therefore, unhelpful for addressing racial disparities in sleep sufficiency. I use the example of housing discrimination to demonstrate how nonideal theory can help us address racial disparities in sleep sufficiency by situating them within a socio-­ historical context. Lastly, I address solutions to racial disparities in sleep sufficiency.

11.1  The Problem of Racial Disparities in Sleep Sufficiency The CDC now recognizes sleeplessness as a public health issue given sleep’s link to general well-being. Sleeplessness makes people more vulnerable to automobile collisions and is also linked to chronic diseases like type 2 diabetes, cardiovascular

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disease, depression (Centers for Disease and Control Prevention 2016; Jackson et al. 2015; Resnick 2015), and hypertension (Akinseye et al. 2015). Sleeplessness also makes people more vulnerable to mortality (Kripke et al. 2002; Gradner et al. 2010). For these reasons (and others), the CDC has stated that sleep is not a luxury, it is necessary for good health; however, given current racial disparities in who gets sufficient sleep in America, sufficient sleep appears to be a luxury for many Black people. In America, how many hours a person sleeps per night and the quality of that sleep is largely determined by race, with racial and ethnic minorities reporting more sleeplessness than white people (Hale and Phuong Do 2007; Jackson et al. 2015; Nunes et al. 2008; Ruiter et al. 2011). In a meta-analysis of studies conducted on racial disparities in sleep, consisting of about 136,000 participants, 37% of Black people versus 28% of white people experienced short sleep duration (Jackson et al. 2013). Another meta-analysis found that Black people also had poorer sleep efficiency than white people (Petrov and Lichstein 2015). Specifically, Black people spend about 15 percent of the night in deep sleep, or slow wave sleep, which is the most restorative phase of sleep compared to white people who spend about 23 percent of the night in deep sleep. Black people spend more time in light sleep, or stages 1 and 2 when compared to non-Hispanic white people who spend more time in deep sleep (Mezick et  al.  2008; National Sleep Foundation 2019; Petrov and Lichstein 2015). Using data from wrist actigraphy and sleep logs, Lauderdale et al. (2006) found that Black men (5.1 hours), followed by Black women (5.9 hours), who are then followed by white men (6.1 hours) and white women (6.7 hours) have the shortest sleep duration. Similarly, an analysis of fourteen studies, including those that used polysomnography also found more sleep sufficiency in white people than in Black people (Ruiter et  al. 2011). The studies in this latter analysis are unique in that some relied on data taken while research participants slept in their natural home environments (Gradner et  al. 2015), which gives some support to researchers who rely on social environments to explain this particular racial disparity (Johnson et al. 2018). One of the many troubling features of racial disparities in sleep sufficiency is that it may map onto other racial disparities in health outcomes (Gradner et al. 2015). For example, Kingsbury and colleagues (2013) and Jackson and colleagues (2015) posit that racial disparities in sleep sufficiency may be linked to Black people’s disproportionate rates of cardiovascular disease. Other research in sleep sufficiency acknowledges the possible link between racial disparities in sleep sufficiency and racial disparities in diseases and conditions like obesity, diabetes, mental illness, and hypertension, but advocate for more research (Akinseye et al. 2015; Laposky et al. 2015). I will discuss conclusions we can draw about the data that we have accumulated in more detail, but first, I will discuss common tips that health agencies have provided for sufficient sleep as well as the shortcomings of these tips.

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11.2  Sleep Hygiene When people cannot sleep there is no shortage of sleep tips available to help them rest. These tips, or sleep hygiene are a “variety of different practices and habits that are necessary to have good nighttime sleep quality and full daytime alertness” (National Sleep Foundation 2019). Websites run by health agencies and sleep foundations generally converge on the following tips for sleep hygiene: 1. Go to bed at the same time each night and get up at the same time each day. 2. Exercise regularly. 3. Use your bed for only sleep and sexual intercourse. 4. Eat regularly and do not go to bed hungry. 5. Do not take your problems to bed. 6. Get enough natural light during the day. 7. Limit time on electronic devices with screens such as TVs and cellular phones. 8. Avoid naps. 9. Make sure your bedroom is not too cold or too warm, free from light and noise, and provides a comfortable place to lie down. 10. Minimize or eliminate all uses of marijuana, alcoholic, caffeinated, and nicotine products (CDC 2016; Hale and Hale 2010; National Sleep Foundation 2019; Tuck 2018). Sleep hygiene is meant to encourage us to take sleeplessness in our own hands and make lifestyle changes that can help us get more sleep. It’s meant to discourage adverse behaviors like “pulling all-nighters,” or sleeping in on the weekends so you can “make up for lost sleep,” which could also be called poor sleep hygiene. Many people who have difficulty sleeping can make the modifications to their lifestyle that sleep hygiene suggests. For some of us, sleep hygiene is a reminder to turn off our phones and turn off our televisions before bed. But if we consider the assumptions that underlie sleep hygiene, the rules of sleep hygiene cannot possibly work for many sleepless people. At the minimum, sleep hygiene requires people to have food security, stable housing, stable income, access to recreation facilities, education, and autonomy over their lives including when, where, and how they sleep. For example, the advice, “Go to bed at the same time every night and get up at the same time each day” assumes that people have the emotional, physical, and familial support needed to control their sleep. If people have a work schedule that gives them no control over their work hours, a new baby in the home, or care for their elderly parents and do not have family support or the finances to pay for professional help, then people may not be able to control when they sleep. Despite some overall increases in the domestic work completed by men in the last few decades, caring for children and the elderly, particularly aging parents still disproportionately falls on women’s shoulders (Bianchi et  al. 2012; Bott et  al. 2017). Similarly, the advice, “Eat regular meals and do not go to bed hungry” assumes that people live in a food secure home and have the finances to control when they eat and how much food they eat. The advice, “Exercise regularly”

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assumes that people live in a neighborhood that is safe for outdoor activities or have the money for a gym membership. Lastly, “Use your bed for only sleep and sex” assumes that there is furniture in the home other than a bed that can be used for lounging, eating, and other daily activities. Overall, sleep hygiene assumes that people live under ideal conditions and have access to goods that can promote sleep. Sleep hygiene can only help ameliorate sleeplessness if people’s individual adverse behaviors are responsible for their sleeplessness. Sleep hygiene also can only help sleeplessness if people live under circumstances that allow them to change adverse behaviors that prevent sleep to behaviors that are conducive to sleep. Sleep hygiene portrays sleep as the luxury the CDC specifically says that it is not. It requires people to have privileges that promote sleep like financial security and familial support. But many people do not have what sleep hygiene requires for us to have adequate sleep. And many people have the added burden of identity issues (e.g. a person unsettled with their assigned gender at birth) that also contribute to sleeplessness, which sleep hygiene does not address. Since sleep hygiene it often recommended by physicians and health agencies, the value of sleep hygiene deserves further exploration by bioethicists. In an effort to continue this exploration, in this next section I offer an analysis of the merits of sleep hygiene as an ideal theory.

11.3  Ideal Theory Ideal theory, as opposed to nonideal theory (which I will discuss later), is an approach to ethical theory or political philosophy (specifically theory of justice) notably developed by John Rawls (1999). Other scholars such as Onora O’Neil (1987, 1993), Cohen (2003), and Charles Mills (2005) have since taken Rawls’s initial descriptions of ideal and nonideal theory and have either given critiques of the theorizing or given expanded or new meanings. Ideal theory essentially begins with the modeling of “what people should be like (character), how they should treat each other (right and good actions), and how society should be structured in its basic institutions (justice)” (Mills 2005, 168). Ideal theory is a theory of justice that starts from a place of what ought to be. According to Charles Mills, although theorists will differ on just what exactly comprises good character, how we ought to treat each other and so forth, all will converge on utilizing an ideal of some type. As an approach to theorizing, Mills (2005) argues that ideal theory utilizes certain concepts. For the purposes of this paper, I will focus on the following three concepts: idealized capacities, silence on oppression, and ideal social institutions.3 Idealized capacities is the charge that ideal theory attributes unrealistic capacities to human agents, unrealistic even for privileged agents, such as the capacity to always do what one wants to do when one wants to do it. Secondly, silence on oppression

3  The other concepts include an idealized social ontology, an idealized cognitive sphere, and strict compliance (usually with the principles of justice).

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refers to ideal theory, by its very definition, remaining silent on historic oppression and its current and continued legacy. This includes silence on the ways systemic oppression can shape social institutions and the human agents that are subject to those institutions. Lastly, ideal social institutions refers to when social institutions like the family, the structure of our economies, or our legal system are conceptualized in such a way that no regard is given for how their actual workings systemically disadvantage populations like women, the poor, and racial minorities. Mills (2005) asks us to look at this list—idealized capacities, silence on oppression, and ideal social institutions—as if we were seeing formal academic ethical theory and political philosophy for the first time: “Wouldn’t your spontaneous reaction be: How in God’s name could anybody think that this is the appropriate way to do ethics?”4 Mills believes this to be an appropriate response: If we start from what is presumably the uncontroversial premise that the ultimate point of ethics is to guide our actions and make ourselves better people and the world a better place, then the framework above will not only be unhelpful, but will in certain respects be deeply antithetical to the proper goal of theoretical ethics as an enterprise. (170)

The problem with ideal theory is that it reinforces ethical theorists’ proclivity to start from an ideal place, one that represents the interests and experiences of a small portion of the population—middle to upper class white males.5 This is why Mills argues that historically oppressed groups have been skeptical of ideal theory, believing its “glittering ideals as remote and unhelpful” (170).

11.3.1  Ideal Theory: Sleep Hygiene I argue that sleep hygiene is an example of ideal theorizing about sleep sufficiency. As an ideal theory, the very foundation of sleep hygiene is built upon what could be and how it should be and not what is. As such, sleep hygiene cannot address the unequal lived experiences of Black people that contribute to racial disparities in sleep sufficiency. Racial disparities in sleep sufficiency require us to confront the nonideal institutions and policies that dispense differential treatment to people of different races. Yet sleep hygiene is not equipped to do this. Sleep hygiene’s “glittering ideals” are at best unhelpful and at worst downright harmful to populations of people like women, the poor, and oppressed minorities. Sleep hygiene places the blame for sleeplessness on individuals and only tells us what we need to do to sleep better without any concern for the historical and contemporary social mechanisms in place that contribute to sleeplessness. In an ideal world, in which social institutions and social customs do not actively disadvantage certain kinds of people, sleep hygiene can be fruitful. In an ideal situation people can alter their home environment  Italics in text.  Here Mills also notes that middle to upper class white males are over-represented in the philosophy profession. 4 5

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and behaviors to have more restful sleep. But as an ideal approach to sleep, ideal theory does not help people whose lives are far removed from the ideal. Idealized Capacities  Sleep hygiene cannot address racial disparities in sleep sufficiency because it relies on some of the problematic concepts that are utilized by ideal theory. For example, sleep hygiene relies on the concept of idealized capacities, namely the capacity for physical activity. Physical activity whether that be outdoor or indoor exercise is a luxury for many people. Physical activity outdoors requires safe environments that are free from crime, potential harm, and hazardous materials. Indoor physical activity often requires equipment and basic know-how. If people have children, physical activity requires child care or devices to include children in physical activity such as outdoor strollers or equipment for their own personal play. For people with disabilities, physical activity can also be a cumbersome activity, albeit in a different way. To participate in physical activity they could require the aid of another person or sometimes expensive or difficult to find equipment that suits their needs. All physical activity, whether indoor or outdoor, disabled or able-­ bodied, requires time. For people who must work long hours or work multiple jobs as well as take on responsibilities for child care and caring for the home, physical activity is not a priority, even if they want to exercise or know its importance. Silence on Oppression  Concerning silence on oppression, another concept utilized by ideal theory, sleep hygiene is silent on racial discrimination. Discrimination has been shown to impact the quality of sleep Black people receive. A study conducted by Tomfohr et al. (2012) used “The scale of ethnic experience” to determine perceived discrimination, which is a measurement of an individual’s belief that members of his or her race experience discrimination. Researchers found that along with age, body mass index (BMI), socioeconomic status (SES), and smoking status, discrimination was also associated with sleep sufficiency. Discrimination was linked with individuals experiencing more time in light sleep stages than deep sleep stages. Scholars have theorized that this is perhaps due to the “autonomy problem,” which occurs when people feel they do not have complete control over the daily happenings in their lives, nor the overall outcome of their lives because of external factors such as the effects of racism (Hale and Hale 2010; Quenqua 2012). Experiencing or witnessing racism is common to the experience of being Black in America and can affect Black people’s sense of autonomy. But sleep hygiene does not address how a lack of autonomy contributes to racial disparities in sleep sufficiency. Sleep hygiene does not have a tip for how to overcome sleeplessness if sleeplessness is caused by racial discrimination and its associated feelings of despair and helplessness. “Don’t take your problems to bed” becomes just a useless and flowery slogan if you face racial discrimination in your daily life. It is of no surprise that therapeutic advice like sleep hygiene makes no mention of racial discrimination and how it affects the health of Black people. As John Hoberman argues in “Black and blue” (2012) medicine often times mirrors the general public and discussion of the Black experience in America, including racial discrimination is not a typical interest among most white Americans. Given legal

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initiatives such as civil rights laws, most white Americans are more likely to believe that any disadvantages that Black people face are because of their own doing, rather than believe that institutional racism is a cause of their disadvantages. Similarly, discussions of racial discrimination in medicine are still rare. For example, issues of race are not a standard part of medical ethics curriculum in medical schools and there is still some resistance to cultural competency training. A likely reason for this is that many physicians do not believe that such an education is warranted and that race education has little place in their lives as physicians. In particular, physicians are still slow to recognize their own racial biases, many times believing that they do not have any and that they treat all patients, regardless of race, the same. Yet, there is no evidence that we should believe these sentiments to be true because we have no reason to believe that physicians have any less racial biases than the general public. But given the degree of professional autonomy physicians are afforded, to ask physicians to examine their feelings on race and their biases or to modify their behaviors toward Black patients will likely be regarded as an invasion of privacy. Asking physicians to engage in discussions on race may also be seen as an attempt to make them take a political stance or attempt to make them politically correct, violating their right to be apolitical practitioners. Therefore, asking physicians to discuss race may be seen as radical reform (Hoberman 2012). Given medicine’s historically poor treatment of Black people, it is not surprising that sleep hygiene is an example of the ways medicine is silent on oppression. However, continuing to ignore the impact of race discrimination on the health of Black people is medically unethical. Being Black in America is a political act in itself given the ways that Black people are the subject of institutional policies and legislation in ways that white people are not (e.g. see local and national legislation on Black people’s natural hair and hairstyles) (Bellafonte 2019). Any practitioner who treats Black people must be willing to engage in the discussion of race and be willing to modify their behavior if it means treating Black people more equally. Rather than being concerned if discussing race makes their job political, physicians ought to be more concerned with whether discussing race makes them better or worse practitioners of medicine. Ultimately, their duty is to treat patients and promote health. They cannot do this if they let race mitigate the care they give to patients or if they ignore the ways that race and racially inequitable institutions influence their Black patients’ health. Given the unethical nature of medicine’s silence on oppression, it is difficult to see how asking physicians to acknowledge how racial discrimination affects Black people’s health, and in this case their sleep health, is a radical request. There is some connection between sleeplessness and other poor health outcomes disproportionately experienced by Black people making sleep health pivotal to addressing racial disparities in health. Therefore, rather than a radical request, addressing race’s influence on health is an understandable and ethical response to inequitable health outcomes. Ideal Institutions  Another concept at the core of ideal theory is ideal institutions. Sleep hygiene, as a type of ideal theory cannot address the socioeconomics of sleeplessness. For example, some researchers have relied on socio-economic status

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to explain racial disparities in sleep sufficiency. The idea is that since racial minorities are more likely to have low education attainment and thus are less likely to have high earning potential when compared to white people, racial minorities are more likely to experience the effects of less education and less wealth, including sleeplessness (Hale 2005; Harris 2010; Williams et al. 2015; Williams and Collins 2001). Additionally, racial minorities are more likely than white people to work multiple jobs, longer hours, later shifts, and more physically demanding jobs, all of which affect their sleep sufficiency.6 Gradner et al. (2015) believes that these factors are socio-economic rather than occupational because, more times than not, these working conditions are unchosen and are the result of a lack of better employment options. In other studies, researchers have found that racial disparities in sleep sufficiency are particularly high among African Americans with professional and administrative occupations when compared to white people in the same occupations. In other words, researchers found that more income for African Americans and the social mobility it can confer to them does not equal more sleep or more restful sleep for African Americans, and it does not lessen disparities in sleep sufficiency between them and their white counterparts. Researchers attribute this disparity to discrimination and microaggressions in the workplace, limited emotional and financial support, or greater levels of stress at home, among other social factors (Jackson et al. 2013). Sleep and the Social Determinants of Health  Sleep hygiene does not account for behaviors and actions that stem from nonideal institutions’ disproportionate influence on people of color’s lives. Racial disparities in sleep sufficiency, according to researchers, is predominantly associated with social factors like experiences with discrimination or inadequate sleeping environments in poorer quality neighborhoods when compared to white people. The same characteristics that are associated with social determinants of health, such as education and economic stability, and stress are the same social determinants of sleep (Hale and Hale 2010). When researchers focus on Black individuals without sleep disorders7 they have found that Black individuals are at a higher risk for sleep insufficiency because they have not fulfilled the social determinants of health (Gradner et al. 2015; Patel et al. 2010).8 Since sleep is a proxy for health (Hale and Hale 2010) disparities in sleep sufficiency mean disparities in opportunities for happy, satisfying lives. As a matter of justice how we discuss sleeplessness must also include racial disparities in

 Grandner excludes occupations where people may work long hours and night shifts like nurses, doctors, and military personnel because these jobs typically come with access to health care and decent pay. 7  Sleep disorders that cause sleeplessness are disproportionately abundant in racial minority groups. It is possible this is because of over-diagnosis based on untreated social factors. 8  Sleep patterns created by cultural practices have also been used to explain racial disparities (Quenqua 2012; Williams et al. 2015). 6

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sleeplessness, their underlying social causes, and what racial disparities in sleep mean for the Black population as a whole. Instead, sleep hygiene is silent on the institutions and social customs that people of color have to navigate on a daily basis. This is unfortunate because sleep hygiene gives no regard to so many people who are not in life’s best position. Mills (2005) summarizes my concerns when he asks the question cui bono? (For whose benefit?): Can it possibly serve the interests of women to ignore female subordination, represent the family as ideal, and pretend that women have been treated as equal persons? Obviously not. Can it possibly serve the interests of people of color to ignore the centuries of white supremacy, and to pretend that a discourse originally structured around white normativity now substantively, as against just terminologically, includes them? Obviously not. Can it possibly serve the interests of the poor and the working class to ignore the ways in which an increasingly inequitable class society imposes economic constraints that limit their normal freedoms, and undermine their formal equality before the law? Obviously not. (172)

Similarly, it does not serve the interests of Black people who are experiencing sleeplessness to pretend that they live under the ideal circumstances sleep hygiene assumes. It does not serve the interests of Black people to follow the rules of sleep hygiene when sleep hygiene does not address their experiences of social inequality. If we are to address the deeply rooted causes of racial disparities in sleep sufficiency, rather than suggest sleep advice that is only applicable to people who live under ideal circumstances, we have to go beyond sleep hygiene and its ideal theory nature. Like ideal theory in the writings of Rawls, sleep hygiene does not mention race and how it affects sleeplessness. In its current format, the only way that race could possibly be incorporated into sleep hygiene would be the tip “Don’t be Black (specifically don’t be a Black man or poor or worse a poor, Black man).” When examining racial disparities in sleep sufficiency and what we are morally required to do to alleviate these disparities, I suggest utilizing nonideal theory. Nonideal theory can ground sleep hygiene in ways that ideal theory cannot and it can ground actual action rather than lip service to racial disparities in sleep sufficiency.

11.4  Sleep Sufficiency and Nonideal Theory Nonideal theory is sometimes described as a realistic theory when compared to the more utopian ideal theory.9 Political realists, or nonideal theorists, like Amaryta Sen (2009) typically converge on the idea that when theorizing about justice we ought to focus more on the nature of existing power structures and the actual circumstances of people not a part of the majority rather than what those power structures could be. Nonideal theorists who support this realistic framework suggest that when developing normative principles we consider humans’ not so ideal characteristics, like selfishness and greed. Only by taking this realistic approach to humans’ 9  Volacu (2018) and Valentini (2012) have noted other distinctions between ideal theory and nonideal theory. Here, I focus on those first established by Rawls.

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nonideal characteristics can our principles hope to criticize existing nonideal political institutions and create real change in the real world. (Valentini 2012). Nonideal theorists like Mills (2005) and Anderson (2010) argue that ethical theorizing should take into account social injustices rather than ideal versions of justice (Volacu 2018). For instance, nonideal theory frames unjust concepts and experiences like that of sexism and racism as a part of social institutions rather than making them anomalies. David Schmidtz (2011) gives the example of the 1896 case of Plessy vs. Ferguson that upheld the idea of “separate but equal” as a part of upholding the 14th amendment. Yet, as we, people of the twenty-first century reflect on this 1896 case, think of it as a case of gross injustice. We don’t think of it as an injustice because “in our thought experiment, egalitarian multiculturalists, committed to preserving separate cultures didn’t agree to it (776)?” Rather we recall “separate but equal” as a case of injustice because we recall the actual events of America in 1896 in which “separate” did not mean “equal” for Black people. Nonideal theory doesn’t romanticize ideals like justice, rather it uses the realities of the systems that govern us, including the injustices they impose on people, to theorize about what steps we ought to take to work for real justice. Nonideal theorizing requires us to contextualize contemporary problems within the flawed social institutions that created them. This includes their histories and their relationships with the people whose lives have been shaped by the institutions. To use nonideal theory to theorize about racial disparities in sleep sufficiency, we must explore the historical and compounding nature of social institutions’ policies that directly and indirectly contributed to racial disparities in sleep sufficiency. The history of America’s housing policies is the kind of context that cannot be ignored when examining racial disparities in sleep sufficiency. Next, I use racist segregate housing policies that made it difficult or impossible for Black people to own homes as an example of the kind of context that nonideal theory requires us to consider when thinking about sleep justice.

11.4.1  Housing Discrimination In The color of law Richard Rothstein (2017) argues that racial segregation in housing is not a result of personal preference. Segregated neighborhoods did not come about because white people chose to live in some neighborhoods while Black people chose to live in others or because of income differences, as the Supreme Court made it seem. Rather housing segregation is the result of unconstitutional10 policies at almost every level—local, state, and federal. For example, in 1933 the American government, in response to a housing shortage, began to provide housing for middle to lower class white families as a part of the New Deal while Black families were

 Rothstein rejects the idea that practices can only be unconstitutional after the Supreme Court has declared them unconstitutional.

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housed in urban projects. The Federal Housing Administration (FHA) would not insure mortgages in what were considered Black neighborhoods but subsidized home builders who developed homes and created entire neighborhoods for white families, as long as they did not sell any of the homes to Black families. Government policies like racial zoning were also enacted to keep Black people from living in white, affluent neighborhoods that were safe and near affluent public schools. Exclusionary zoning or what is commonly referred to as “snob zoning” is a pervasive, yet under-handed way that Black people (and other groups) are kept from living in well-to do neighborhoods that are mostly populated by white families. Exclusionary zoning is the act of using zoning laws and ordinances to forbid certain types of housing in neighborhoods such as apartments, multi-family homes, or homes with a certain limited amount of square footage, thereby keeping people with low to moderate incomes out of the neighborhoods. Communities may argue that they are engaging in “rational land-use planning” and that they are protecting the value of their homes (Equitable Housing Institute 2019; Krefetz 1979). Because the people who are kept out of well-to-do neighborhoods (aka so called “white neighborhoods”) are mostly people of color, exclusionary zoning is more of an exercise in institutional racism than it is an act of land planning. Exclusionary zoning then becomes a tool for permitting access to stable housing and the health benefits of stable housing to some people while withholding it from people of color, including Black people. On average, African American people’s income is  about 60 percent of white people’s income, and their wealth is about 5 percent of white people’s wealth. Because many American middle class families gain their wealth from the equity in their home, this difference in income and wealth, as Rothstein (2017) argues, can be attributed to federal housing policies of the twentieth century. Federal policies that prevented Black people from owning homes also prevented Black people from benefitting from the equity appreciation that white people gained from home ownership. In 1968, Black people were finally legally allowed to buy homes in predominantly white suburbs, but now they could not afford to buy the homes that they once could have afforded. White people were afforded other aspects of social mobility because of the equity in their homes that Black people were not afforded. Rothstein argues that home equity allowed white parents to send their children to college. Their children were able to care for their aging parents, yet aging parents did not have to financially depend on their children, and parents were able to financially care for their children after their own death (Rothstein 2017). Arguably, segregate housing policies like exclusionary zoning and red-lining (policies meant to keep Black people out of certain areas by literally drawing a red line on a map to indicate locations where housing loans would not be given because they were considered “Black neighborhoods”) contributed to the current housing inequities and socioeconomic status inequities among white and Black people. People of color, like Black people, are still more likely to experience poverty than white people and less likely to own homes, and therefore, live in poorer neighborhoods when compared to white people (Reeves et al. 2016). Poorer neighborhoods are less

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likely to be equipped with what is needed for restful sleep and more likely to have those characteristics that prevent sleep. Racial disparities in sleep sufficiency have roots in noise pollutants. Urban, less affluent neighborhoods, which are disproportionately populated by people of color have higher rates of noise pollutants (Hale et al. 2013; Quenqua 2012). Excessively loud noise is a threat to physical and mental health because it contributes to decreased sleep duration and lowered sleep quality. Being exposed to noise pollutants at night also increases the likelihood of having to spend money on medical bills and sleep aids like sleeping pills (Hale and Hale 2010; Hale et al. 2013; World Health Organization 2017).11 Neighborhoods with excessive noise can also  have other characteristics that undermine sleep, such as excessive artificial light (e.g. street lamps), inadequate heating and cooling (either because the home does not have the proper equipment or because the residents cannot afford to properly heat and cool their home), and air pollutants. People who live in less affluent neighborhoods may also have a heightened sense of vigilance due to fears about their own and/or their family’s safety (Hale et al. 2013). Examining racial disparities in sleep sufficiency is ultimately a matter of justice for bioethicists, and thus requires an examination of the history of injustices dispensed to the Black community by American institutions, like that of housing. Housing is one of the major contributors to the richness of our sleep. Not getting the amount of sleep our bodies and minds need to be productive and feel well stops us from engaging in other opportunities for mental, physical, and spiritual wellness. It is a great injustice when these opportunities are withheld from Black people because of the risks associated with their race. If we are going to address why Black people are sleeping less than white people, and solutions that go beyond sleep hygiene, we cannot ignore the history of America’s housing practices and how they affect Black families today.

11.5  C  oncerns About Sleep Hygiene at the Micro and Macro Level Rawls (1999) argues that nonideal theory can be employed after an ideal conception of justice has been established. Then nonideal theory can be used to determine what we are to do when conditions are not as ideal as they are assumed to be in ideal theory. Simmons (2010) makes a similar claim when offering a criticism of nonideal theory: “We, as theorists of justice, simply should not care which policies are politically possible (etc.) unless those policies are also on an acceptable path to a just institutional structure (34).” According to Volacu (2018), this means that without developing a conception of justice at the level of ideal theory, theorizing at the

 Additionally, the WHO posits that the wealth gap between the rich and the poor will continue to increase if the effects of noise pollutants on health and wealth is not addressed (2017).

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nonideal level might lend itself to addressing particular injustices given the current state of the world but it makes it that much more difficult to achieve lasting justice. This two-step method proposed by Rawls, Simmons, and Volacu, however, is only needed when there is some disagreement about what is just because what is just is either unclear, disputed, or otherwise not apparent. Starting from an ideal conception of justice is unnecessary when discussing racial disparities in sleep sufficiency because what is just is clear—race should not be a determining factor for the amount or quality of sleep a person receives. We have accepted that we have strayed from a particular conception of justice; we have allowed race to influence quantity and quality of sleep thereby, by proxy, making race a social determinant of health. What is next is to determine proper solutions given our nonideal state, ones that address this particular injustice and the injustices that created racial disparities in sleep sufficiency. This is likely a greater source of disagreement. But how we choose to end racial disparities in sleep sufficiency is made uncomplicated by the likelihood of agreement that its very existence is unjust. We have the empirical data that shows racial disparities in sleep sufficiency exist and continue to persist even when other features of Black people and white people’s lives are equal. In this paper, I have established that these disparities are unjust. Yet, there is a lack of consensus on what should be done about racial disparities in sleep sufficiency. Given my argument that theorizing at the nonideal level is the next step in theorizing about racial disparities in sleep sufficiency, in this section I focus on two possible concerns that my argument may encourage—concerns about how to help Black individuals who are currently not experiencing restful sleep and concerns about long-term measures to ensure that social inequities do not disproportionately affect Black people’s sleep. There is a natural tension between these two concerns because although they have the same goal, they’re addressing the problem at different levels for different groups of people—current Black people and future Black people. Micro Level Changes  One of the criticisms that I offer in this paper is that sleep hygiene offers a privileged, racist, and unhelpful solution to a socially complex problem. In the context of racial disparities, it forces us to view Black people who are not sleeping through the lens of hyper agency and label their sleeplessness moral failures. Sleep hygiene though, as a type of cognitive behavioral therapy, is not the only recommended remedy for sleeplessness. Other remedies for sleeplessness include other types of cognitive behavioral therapy such as the use of biofeedback devices or relaxation training. Prescription and over the counter sleep aids are also used for sleeplessness, however, these are usually used for patients with sleep disorders such as insomnia (Mayo Clinic 2019).12 Administering sleep aids to Black people who are not sleeping could mean medicalizing social deficiencies in many of the ways we already medicalize biological  When considering medical remedies for sleeplessness we also have to consider issues of access, including disparities in who has access to health insurance and whether insurance companies will cover therapies for sleeplessness.

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deficiencies. In other words, we would treat issues like poverty in some of the same ways we treat diseases, namely making them worthy of medical intervention. There are some practical issues that would have to be resolved with this manner of addressing disparities, including determining how the drugs can be safely dispensed and drug use fairly monitored. The associated practical issues alone do not invalidate this particular use of medicine. Rather, we would have to continue to develop safe ways to use medicine in this manner. I, therefore, am not opposed to using sleep aids in this manner if it will help individuals sleep; however, if we do not want to medicalize sleeplessness that is not caused by biological deficiencies, diseases, or disorders then sleep hygiene could be altered so that it is more appropriate for Black individuals (and others) experiencing sleeplessness because of social inequities.13 To help individuals who are not sleeping, sleep hygiene could make use of addendums in an effort to make recommendations that encourage sleep but are somewhat less presumptive and privileged as those that are currently a part of sleep hygiene. For example, health agencies tell us that getting sufficient daily activity is good for inducing sleep. This tip usually includes some information about the benefit of sleep. For instance, the NSF states that even just 10 min of aerobic exercise a day can improve sleep. It also suggests avoiding intense workouts right before bed (National Sleep Foundation 2019). What this tip does not include is what to do if we recognize the benefits of exercise for sleep health but do not possess the social goods to follow this tip. For people who lack resources to engage in exercise, sleep hygiene can include tips that make exercise more feasible. For instance, many neighborhoods have public schools that have areas for free exercise after school hours and are geographically desirable because they are already in people’s neighborhoods. Typically, there is at least some semblance of playground equipment, basketball courts, and/or a running track at public schools. To protect children that go to school there during the day, the recreation areas are usually fenced in providing at least some safety to exercisers. There may even be other people in the neighborhood using the equipment that can create a space for community, which can also help people sleep in the evenings. Similarly, the sleep tip “establish a sleep routine and go to bed at the same time every night” typically includes the tip that we should avoid “bedtime procrastination (National Sleep Foundation 2019).” This tip however does not include what to do when having a sleep routine is impossible because of responsibilities to children, partners, family members with disabilities, or aging parents. Family obligations, stressors in the home or at work can all encourage sleeplessness, yet sleep hygiene makes it seem as if an unregulated sleep schedule is always a choice where we have chosen to make sleep the last priority on our to-do list. This tip could include information on how to speak with domestic partners and family members and ask  This is not to say that we should not medicalize sleeplessness that is caused by social factors. But to do this we would have to consider whether any social deficiencies warrant medical intervention and whether there is a medically necessary distinction between enhancement and treatment. I have discussed this topic in “Not just ‘study drugs’ for the rich: Stimulants as moral tools for creating opportunities for socially disadvantaged students” (Ray 2016).

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them for more help with domestic duties or how to find a counselor or therapist to help with underlying emotional or psychological causes of sleeplessness. Modifying sleep hygiene is a modest attempt to help sleep hygiene better fit the lives of individuals. It is also an attempt to not sacrifice individuals who are currently experiencing sleeplessness for the sake of examining racial disparities in sleep sufficiency on a larger scale. But sleep hygiene, even modified, still has its shortcomings. For instance, it still makes assumptions about people’s privileges and access to resources. Additionally, modifying sleep hygiene in the ways I have briefly outlined above only address individuals. Even when we modify sleep hygiene, these are still steps that an individual must take to alter their social environment to fit the recommendations of sleep hygiene and it still provides  no commentary on how social environments can change to help people sleep. A natural concern should be whether people should alter their lives to fit sleep hygiene, or whether sleep hygiene is not an appropriate guide for behaviors given some Black people’s nonideal social environments. Modifying sleep hygiene and altering individual lives to fit its recommendations still assumes hyper agency and places the blame on individuals for their sleeplessness. Modifying sleep hygiene now tells individuals to try harder to sleep, with no regards to social deficiencies. The shortcomings of sleep hygiene force us to rethink who is the appropriate target of sleep hygiene and whether recommending sleep hygiene to some people does more harm than good. Macro Level Changes  Modifying sleep hygiene addresses racial disparities in sleeplessness at the micro level. It is something that we can do right now to immediately help people experiencing sleeplessness. But we also must address these disparities at the macro level, when sleep hygiene is simply not enough to achieve lasting justice. At the macro level, we can also address racial disparities in sleep sufficiency by encouraging Black people to seek counseling and therapy. Counselors and therapists can help Black people address their experiences of racism and the emotions that come with their experiences of being Black in America. For this to be a practical option, however, more counselors and therapists must have the skill to address this need in the Black community. More counselors and therapists must be willing to acknowledge the impact of race on their Black clients’ health. For instance, more counselors have to be willing to acknowledge the influence of stereotypes, negative media portrayal, discrimination, and microagressions on Black people’s health (Butler and Ann Shillingford-Butler 2014; Nadal et al. 2014). With their help, some of the negative experiences associated with being Black in America can have less of an impact on Black people’s sleep quality. We also have to address future populations of Black people and what we can do to make sure they do not fall victim to racial disparities in sleep sufficiency. Like other racial disparities in health care and health outcomes, racial disparities in sleep sufficiency is the result of a failure of many social institutions. The subtle and overt racism in our institutions’ policies and laws, would have to be rectified. The disadvantages they have conferred to multiple generations of Black people would also have to be rectified. But racism is so interwoven in the very foundation of our social institutions that for their racist policies to end, and therefore the disparities they cause to end, our institutions would likely have to be completely destroyed and

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rebuilt. We would have to rethink every institution that affects health and examine the ways they intersect to disproportionately disadvantage Black people. This would include education, including how we educate pre-medical and medical students and professional health care givers, income distribution, housing, voting rights, law enforcement and criminal punishment, and other institutions that have a history of disadvantaging Black people. I acknowledge that this will be no easy task but addressing any racial disparities, including racial disparities in sleep sufficiency requires us to confront our racist past and how that past manifests itself in the twenty-first century. It requires us to think critically about the systematic oppression of Black people and the ways oppression damages health. It may also require us to abandon the ways we have always done things, which will be uncomfortable and challenging. But this is the cost of justice. If we want to end unjust racial disparities, like that which exists in sleep sufficiency, then we have to be willing to pull ourselves out of complacency.

11.6  Conclusion Too often discussions about sleeplessness focus on remedies that encourage people to change their individual behaviors. These recommendations, known as sleep hygiene, tell people that getting proper sleep is just a matter of being willing to exercise more or eat differently. Since sleep is central to health, how we address sleeplessness deserves careful exploration. In my contribution to the discussion, I have given a criticism of the use of sleep hygiene. My main criticism is that sleep hygiene ignores the fact that sleep sufficiency is not equally distributed among the races. Because research tells us that Black people sleep a lot less than white people, any system of sleep remedies must also address the causes of this disparity. As an ideal approach to sleep, sleep hygiene does not do this. Sleep hygiene is appropriate for people whose behaviors contribute to their sleeplessness and are privileged enough to have the resources needed to help change their adverse behaviors. But for the countless Black people whose sleep is at least partially due to systematic inequalities sleep hygiene is unhelpful and harmful. Sleep hygiene improperly places the blame of sleeplessness on their unrested bodies and not on the social institutions and social customs responsible for helping to create racial disparities in sleep sufficiency. Nonideal theory provides a framework for bioethicists interested in the social causes of unequal health outcomes. It encourages us to look at the ways our institutions, customs, and social histories negatively influenced Black people’s lives in America and contributed to racial disparities in sleep sufficiency. When developing solutions, nonideal theory encourages us to begin with the acknowledgement that we have failed Black people and have treated them unjustly. Without beginning from a place of nonideal theorizing, recommendations like sleep hygiene become just another social institution that propagates racial disparities in health rather than a tool to solve the problem.

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Quenqua, Douglas. 2012. How well you sleep may hinge on race. New York Times. https://www. nytimes.com/2012/08/21/health/how-­well-­you-­sleep-­may-­hinge-­on-­race.html. Accessed 1 May 2019. Rawls, John. 1999. A theory of justice. Cambridge: Harvard University Press. Ray, Keisha. 2016. Not just “study drugs” for the rich: Stimulants as moral tools for creating opportunities for socially disadvantaged students. American Journal of Bioethics 16 (6): 29–38. https://doi.org/10.1080/15265161.2016.1170231. Reeves, Richard, Edward Rodrigue, and Elizabeth Kneebone. 2016. Five evils: Multidimensional poverty and race in America. The Brookings Institution. Resnick, Brian. 2015. The racial inequality of sleep. The Atlantic. https://www.theatlantic.com/ health/archive/2015/10/the-­sleep-­gap-­and-­racial-­inequality/412405/ Accessed 1 May 2019. Rothstein, Richard. 2017. The color of law. Chicago: University of Chicago Press. Ruiter, Megan E., Jamie DeCoster, Lindsey Jacobs, et al. 2011. Normal sleep in African-Americans and Caucasian-Americans: A meta-analysis. Sleep Medicine 12 (3): 209–214. https://doi. org/10.1016/j.sleep.2010.12.010. Schmidtz, David. 2011. Nonideal theory: What it is and what it needs to be. Ethics 121 (4): 772–796. Sen, Amartya. 2009. The idea of justice. Cambridge: Harvard University Press. Simmons, A.J. 2010. Ideal and nonideal theory. Philosophy & Public Affairs 38 (1). Tomfohr, Lianne, Meredith A. Pung, Kate M. Edwards, and Joel E. Dimsdale. 2012. Racial differences in sleep architecture: The role of ethnic discrimination. Biological Psychology 89 (1): 34–38. Tuck. 2018. Sleep hygiene. https://www.tuck.com/sleep-­hygiene/. Accessed 1 May 2019. Tucker, Myra J., Cynthia J. Berg, William M. Callaghan, and Jason Hsia. 2007. The black-white disparity in pregnancy-related mortality from 5 conditions: Differences in prevalence and case-­ fatality rates. American Journal of Public Health 97 (2): 247–251. Valentini, Laura. 2012. Ideal vs. nonideal theory: A conceptual map. Philosophy Compass 7 (9): 654–664. https://doi.org/10.1111/j.1747-­9991.2012.00500.x. Volacu, Alexandra. 2018. Bridging ideal theory and nonideal theory. Political Studies 66 (4): 887–902. https://doi.org/10.1177/0032321717730297. Williams, David R., and Chiquita Collins. 2001. Racial residential segregations: A fundamental cause of racial disparities in health. Public Health Reports 116 (5): 404–416. Williams, David R., Selina A.  Mohammed, Jacinta Leavell, and Chiquita Collins. 2010. Race, socioeconomic status and health: Complexities, ongoing challenges and research opportunities. Annals of the New  York Academy of Sciences 1186: 69–101. https://doi. org/10.1111/j.1749-­6632.2009.05339.x. Williams, Natasha J., Michael Gradner, Amy Snipes, April Rogers, Olajide Williams, Collins Airhihenbuwa, and Girardin Jean-Louis. 2015. Racial/ethnic disparities in sleep health and health care: Importance of the sociocultural context. Sleep Health 1 (1): 28–35. https://doi. org/10.1016/j.sleh.2014.12.004. World Health Organization. Data and Statistics. 2017. http://www.euro.who.int/en/health-­topics/ environment-­and-­health/noise/data-­and-­statistics. Accessed 7 May 2019.

Chapter 12

Thin or Thick, Real or Ideal: How Thinking Through Fatness Can Help Us See the Dangers of Idealized Conceptions of Patients, Providers, Health, and Disease Alison Reiheld

What explains how the problem of ‘health’ is understood at a particular historical moment? What is the process by which cultures define certain activities, individual and collective, as essential for health? Why are other activities excluded or neglected? –Robert Crawford 1980, 367

It will come as no surprise for me to claim that the fundamental standard of health care is health. Diagnosis seeks to tell us whether we are healthy. Treatment seeks to achieve health. Our concepts of illness depend on our concept of health. So do our judgments of whether doctors and nurses and other health care providers are being good providers. And so do our judgments of whether patients are being good patients. The centrality of our conception of health has led many physicians and philosophers of medicine to take a step back and ask what it is that we are trying to promote when we engage in health promotion, what it is that we are aiming for when we seek to eliminate illness or achieve health. In this paper, I will not advocate for a particular conception of health, though we will have to understand that conceptions differ. Rather, I focus on the way that medicine too often conceptualizes health as an ideal value and an ideal state that we should all be striving to achieve, placing health above other values. Patients who do not prioritize attaining this ideal become, by definition, bad patients. Physicians and nurses who help patients achieve what health they can achieve or wish to achieve while also fulfilling other values may be seen as coddling patients or as betraying their profession.

A. Reiheld (*) Department of Philosophy, Southern Illinois University–Edwardsville, Edwardsville, IL, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 E. Victor, L. K. Guidry-Grimes (eds.), Applying Nonideal Theory to Bioethics, Philosophy and Medicine 139, https://doi.org/10.1007/978-3-030-72503-7_12

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I will focus on obesity as an example throughout this chapter for two reasons. First, the way that patients and providers interact with fatness--from the clinical encounter1 to the ontological creep of conceiving of body size now as a disease rather than a risk condition--reveals the ideality of our notions of health and the way that health is prioritized in a dominant value system some call Healthism. These ideal notions of health and health prioritization can be found in arguments2 critiquing claims that it is ok to be fat.3 Such critiques cling to the belief that it is very much not ok to be fat and, to support this, rely on what has come to be known as the Weight-Centered Health Paradigm (WCHP). The WCHP presumes that smaller bodies are healthy and larger ones are unhealthy, and that individual control of diet and exercise is sufficient to achieve a smaller body (Bacon and Aphramor 2011; Campos 2004, O’Hara and Taylor 2018; Robson 2003). Combine the WCHP with healthist prioritization of the value of health over other values, and we get a moral commitment by bioethicists, patients, and providers to pursue smaller bodies at almost any cost. This moral commitment is not isolated to the U.S. but instead has global reach.4 The WCHP is an excellent example of an ideal theory of health complete with idealized conceptions of doctors, patients, health, and disease. The second reason I use obesity as my sustained example is that reflections on health and body size in reaction to the ideals of the Weight-Centered Health Paradigm have generated nonideal (or less ideal) conceptions of health. This includes the Health At Every Size model and provides an idea of what nonideal conceptions of health in general might be like. These twin considerations are woven throughout this chapter’s exploration of ideal conceptions of health in this very real, nonideal world.

1  Clinicians and bioethicists often explicitly endorse fat shaming as a practice that is not only acceptable but also necessary. This will be discussed in detail later in this chapter. 2  Cristina Ritchie has presented just such an argument at both the International Congress on Law and Mental Health (held in Rome in 2019) and the American Society for Bioethics and Humanities (held in Pittsburgh in 2019). So did Daniel Callahan, in his 2012 article in the pages of the Hastings Center Report. More on both later. 3  In this Chapter, I use the terms “obesity” (the disease term) and “fatness” (a body size/appearance descriptor whose meaning differs greatly between social contexts). But I also refer to people as “fat”; while often used as a derogatory term that may even rise to the level of a slur, I use the term “fat folks” as a neutral descriptor for people whose bodies will be seen as larger than they “should” be. Fat advocates have long taken this term and attempted to restore it as a simple descriptor. One of the most famous examples of this is Marilyn Wann’s book Fat! So? (1998). I recognize that it can be a challenge to see it used this way. 4  Brewis et  al. (2011) tested for cultural variation in how people conceptualize and stigmatize excess weight and obesity, using cultural surveys and body mass estimates collected from 680 adults in 10 countries and territories. They found a shared model of obesity “that transcends populations and includes traditionally fat-positive societies. Elements include the recognition of obesity as a disease, the role of individual responsibility in weight gain… Results suggest a profound global diffusion of negative ideas about obesity.” (269) Indeed, this should be unsurprising given the way that the ICD-10, compiled and revised regularly by the World Health Organization, construes obesity as disorder of food consumption. The diagnostic power of the ICD-10 reaches every nation whose clinicians deploy it.

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There are good reasons to question any ideal theory. Ideal theories of health are no different. We should be especially concerned about how the ideal and the real play out in thinking about thick and thin bodies as well as thick and thin conceptions of health. Our reasoning must be tailored to the fact that we reason in a nonideal world. I begin by laying out the nature of ideal theory and how our dominant conception of health is an example of ideal theory. I then move on to consider the relationship between healthism and ideal theory before illustrating how nonideal theory can provide a much better way of thinking about health and what makes for a good patient or a good provider. Indeed, it can provide a better way of doing bioethics. While the phrase “that’s not ideal” is usually used as a subtle way of saying that someone or something has fallen short of expectations, “nonideal theory” here will simply mean theory that takes account of the very real, nonideal world in which we live. Throughout, I use fatness to illustrate the dangers of idealized conceptions of doctors, patients, health, and disease.

12.1  W  hat Is Ideal Theory, and How Is Our Dominant—and Working—Conception of Health an Example? I need to be crystal clear here: I am not attempting to prove that all health care providers, all bioethicists, and all patients deploy an ideal conception of health or even the same ideal conception of health. All I aim to show is that dominant conceptions of health include one or more of the following: idealized conceptions of health, idealized agents of health (providers or patients), and idealized methods of applying conceptions of health. Before we can do this, however, we need a bit more of an understanding of how ideal theories operate; indeed, of what ideal theories are.

12.1.1  Health as an Ideal Theory Charles Mills (2005) famously critiques ideal models, noting that ideal models can set norms or attempt to describe the very real world as it is while abstracting away from it. Mills argues that such ideal models necessarily require us to make simplifying assumptions based on what we believe are the more important features of the thing being modeled. For our purposes, that thing will be health. In our pursuit of an ideal model, we will include certain features and omit others to produce “a schematized picture of the actual workings and actual nature of” the thing being modeled (Mills 2005, 167). But, says Mills, sometimes when we try to model a real thing in an idealized way, it will also be possible to produce an idealized model, or exemplar, of what the ideal version of that real thing should be (Mills 2005). As is common in philosophy, Mills assigns a variable to the thing we are

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idealizing, P, in order to be able to refer to it without having to specify it. Obviously, says Mills, unless the very real thing actually is itself the idealized form, a gap will exist between it and the ideal, and correspondingly between ideal-as-descriptive-­ model and ideal—in the sense of accurate—model of how P should work. And obviously the “should” here will in general not necessarily be a moral “should,” but may involve norms of a technical functionalist kind (an ideal vacuum cleaner, an ideal concentration camp, an ideal digestive system, and so on) or just limiting assumptions convenient for the purposes of mathematization and calculation (an ideal gas, a perfect vacuum, a frictionless plane, a resistance-free conductor). (Mills 2005, 167)

The problem comes when we stop there and then use the idealized exemplar as the norm or standard that we ought to achieve. This moralizes the ideal norm. A practical failure to achieve the ideal thus becomes a moral failure. This is exactly what happens with our conception of health. When it comes to health, we tend to idealize the technical description of health that we choose. We then set that norm up as an ideal, both in terms of how we judge persons for whether they have attained it and for how we design health care and health promotion campaigns. Thus, moralization of technical descriptions is baked into the way we conceive of health. It is precisely the kind of thing for which norms of a “technical functionalist kind”, as described by Mills in the quote above, become norms that we are justed to be good for achieving and bad for not achieving. The reason for this is that the ideal of health has a twin: a value system in which health is given priority over other values. This value system, dubbed healthism by Robert Crawford, will be discussed in detail shortly. But before we get there, we need to lay out a few more features of ideal theory.

12.1.2  Y  ou Can’t Get There from Here: Navigating the Gap from the Real to the Ideal It is typical of ideal theories that they do not reliably attend to how we get from the nonideal place in which we live and must work, to the ideal (Jaggar 2015; Mills 2005; Norlock 2019; Tobin and Jaggar 2013a and b). There are several reasons for this. One reason is that idealizations are so abstracted that they often presume a simplified starting point in the technical description which is then used as though it will uniformly get us from the real world to the ideal world. In fact, however, different agents are starting out at very different places. Agents also operate in nonideal contexts which cannot be fully described by idealized models. There need to be many ways of getting to an idealized goal even if—and this is a big if—that idealized goal is one for which we should be aiming. As Tobin and Jaggar (2013a) put it, “We need multiple maps for multiple journeys. It is not plausible that multiple maps for many journeys, some still unplanned, can be drawn successfully by solitary [theorists] sitting alone in their armchairs” (407). Or, I contend, by a whole class of professionals—whether bioethicists or health care providers—working in abstraction from those affected by their work.

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Let us consider diabetes care. Health care providers who give abstract idealized recommendations to patients often find that patients do not or cannot follow them within the constraints of their actual lives. Consider the classic example of a physician advising a diabetic patient to test their blood sugar at regular intervals throughout the day and administer an insulin injection when necessary as soon as the patient determines that it is necessary. This is an attempt to bridge the real and the ideal (far better than merely advising a patient to “get your blood sugar under control”). Yet most patients are stigmatized by employers who learn they are chronically ill, and regular self-injection in a workplace is too often presumed to be IV drug use. So, diabetics are often not fully compliant for reasons that have nothing to do with the benefit of the ideal and everything to do with the real in which they live. Many physicians already know that to guide their patients to health, they must account for the real—the nonideal—in their map of how to approximate the ideal. Those who have not learned this are bound to be disappointed in both their ability to help patients achieve the ideal and in their patients’ dedication to achieving the ideal. Professionals who reason in abstraction from the lives of those who are morally judged by their level of commitment to the ideal of health—in this case, controlled diabetes—cannot successfully draw the map from the real to the ideal. This example nicely helps us transition from the point that ideal theories generally fail to draw a map from the real to the ideal, to the next way that ideal theory constructs dangerous conceptions.

12.1.3  W  e Don’t Work Like That: Idealizations of Agents and Conditions/Methods Ideal theories depict not only ideal models but also, as moving parts of those models, ideal agents and ideal conditions/methods (Mills 2005; Jaggar 2015, 113). As Mills puts it when drawing on the work of Onora O’Neill, …idealization involves the attribution to the agents (as conceived of in theory) of human capacities significantly deviant from the [actual capacities of humans]; for example, their degrees of rationality, self-knowledge, ability to make interpersonal cardinal utility comparisons, and the like. Morally, idealization involves the modeling of what people should be like… (2005, 167–8)

These idealized capacities of human agents as visualized in the theory are “unrealistic even for the privileged minority, let alone those subordinated in different ways, who would not have had an equal opportunity for their natural capacities to develop, and who would in fact typically be disabled5 in crucial respects” (Mills

5  Mills here seems to be drawing on a conception of disability often referred to as the “social construction” model, in which disability does not inhere only or even primarily in an individual’s body, but rather in the way society’s expectations for behavior, cognition, and movement are built into the workplace, education, architecture, design of cities, and more.

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2005, 168). How, then, does this ideal agency play out in medicine? Ideal agents under the ideal theories that dominate medical practice include an ideal patient who is compliant/adherent in pursuit of the ideal model of health, and who is operating within ideal conditions even when neither ideal conditions nor ideal methods exist. Our case of the diabetic patient also bears on this aspect of idealization, for the patient is not fully compliant with the doctor’s orders in pursuit of the ideal model of health, nor are they operating within ideal conditions: employers do discriminate against people with chronic illnesses, and do leap to conclusions about IV drug use and suspected drug users. It is not only patients who are idealized agents in medicine. For health care providers and public health advocates, there is a deep tension in trying to acknowledge the real world constraints within which patients live, while still conceptualizing patients as idealized rational actors in pursuit of perfect health. This tension is one source of what nursing literature has long acknowledged as “moral distress”: the gap between the real and the ideal that providers, as agents of health, have limited ability to bridge (Jameton 1984). Moral distress occurs when, for instance, a doctor or nurse advises their diabetic patient to stick with the regime but the patient cannot because of social constraints that neither the providers nor the patients can change soon enough to make a difference. Both patients and providers struggle because of the way they are idealized as agents. For patients, the struggle comes in being found wanting for not having attained the ideal, often with no clear instructions and inadequate support in how to do so, or at least no clear instructions and support that actually account for the very real conditions of their lives. For providers, the struggle comes in being expected to be able to service or guide patients in ways that will produce health with some regularity, while lacking the social infrastructure that might make this possible from ensuring patients have access to tests and treatments they need to ensuring that social determinants of health are optimal. These struggles are apparent in many aspects of medicine but, as we shall see, excruciatingly apparent in the care (or lack thereof) of fat folks.

12.1.4  Ideals as Utopias, Utopias as Dystopias One important aspect of ideal theories that we must be clear on before we proceed is that ideal theories often seek to create utopic visions. For our purposes, we will think of the ideal state of health as a utopia, and of both providers and patients as citizens/agents within that utopia. As mentioned previously, a classic element of critiques of ideal theories is that they fail to engage the nonideal world in which we actually live, and so give us very little guidance on how to get from where we are to the envisioned utopia (Jaggar 2015; Mills 2005; Norlock 2019; Tobin and Jaggar 2013a and b). But it’s not just that the method of getting to a utopia is idealized in particularly unhelpful ways. In addition to the flawed notions of how to get to utopias, the utopias themselves may be flawed in their very idealism, creating

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unattainable goals that Elizabeth Anderson has called “Paradise Islands.” Ideal theorists such as John Rawls may well have seen themselves as creating ‘realistic utopias’ that ‘take men as they are and laws as they can be made to be’. However, these utopic visions are not only actually difficult to get to from where we are but, even when realistic, they often reinscribe injustices that play out in our current world (Mills 2018, 45). Charles Mills explores this point, noting that the process of creating a utopia often creates dystopic conditions for people who don’t fit the utopia and yet nonetheless exist in it. Mills (2018) argues that utopic visions characteristic of ideal theory often ignore “alternative voices and perspectives of the historically excluded”—those who experience marginalization or other aspects of oppression due to class, race, gender, or other traits—in crafting “the relation of the utopic and dystopic, and what should appropriately be seen as ‘ideal’” (49–50). As a compelling example, Mills considers the mid-twentieth century phenomenon of white flight. White flight occurs when white folks leave the urban core to take up residence in pockets within cities or in suburbs and increasingly exurbs, farther and farther away, in search of an ideal life which involves only the people they choose to be with. Mills draws for this on the work of Rich Benjamin. Benjamin described white flight as a geographical retreat and a withdrawal from the public good, a public good that included Black folks. White flight sought a public good that did not. Benjamin describes this as a search for “whitopia.” In such places, the conception of the public good is white racially, culturally, or both. Mills also references the utopias envisioned by European colonial powers as ones involving dominance and control by white Europeans over the peoples and resources of distant lands as well as their own. These examples reveal a “sinister kind of connection between utopia and dystopia: that in some cases one group’s utopia is another group’s dystopia” (Mills 2018, 52). How do we bring this back to our considerations of ideal theory and health? We need only consider historical and modern disparities in features of health care. Think of the modern issue of maternal mortality. In the U.S., 44 Black women die per every 100,000 live births; 13 white women die per every 100,000 live births. Thus, Black women are three times as likely to die from complications of pregnancy and childbirth as are white women (Martin and Montagne 2017; Reiheld 2018). Think also of the very architecture of hospitals. Hospitals in the U.S. have historically been built to support racial segregation of patients. Historical blueprints for the fourth floor of Detroit Memorial Hospital show the “ALL NEGRO SECTION man and woman” and the “NEGRO WOMEN WARD SECTION” and an “ALL WHITE (women)” section (Galarneau 2018). And in modern hospitals entire wings have been built for wealthier patients, so-called “pavilion patients” or “red blanket patients”, so called because as they move throughout the hospital they are accompanied by a red blanket to mark them out as a special class of patient (Clarke 2015). Just as whitopias have no place for Black folks, the physical design and procedures of hospitals historically produced utopias for Whites and currently produce utopias for the Wealthy, with no need to mix or mingle with those marked out as lesser. Similarly, every utopian vision of health is a dystopia for those who cannot achieve it.

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12.2  Ideal Theory Fails at Fatness We finally have the tools we need to delve into our sustained case study of fat patients. As we shall see, when it comes to idealized utopic conceptions of health and the care of fat folks, things go very wrong very quickly. It begins with the map from the real to the ideal and assumptions about idealized conditions and methods. A routine form of advice that providers give to fat patients is to “lose weight.” At most, this tends to come along with the advice to “exercise”—which assumes the baseline for fat patients is no exercise—and “eat well”—which assumes the baseline for fat patients is poor nutrition. Consider how such instructions to fat patients assume access to resources like safe neighborhoods for exercising outdoors or the financial capacity to get and maintain a gym membership, or access to fresh fruits and vegetables at affordable prices near the patient’s home or work, or even assume that the patient is not disabled in ways that would prevent them from “complying with” or “adhering to” the provider’s recommendations. The assumption that fat patients can comply with doctor’s orders to “lose weight” between one visit and the next is a common basis for physician and nurse judgments of patient compliance/adherence. This kind of ideal is not only a central component of the WCHP but also is baked into bioethicist Daniel Callahan’s argument for fat-shaming. Callahan (2012) advocated fat shaming in the clinical encounter and in health promotion on the grounds that “obesity may be the most difficult and elusive public health problem this country has ever encountered” and compares being obese with smoking, advocating that the same kinds of pressures be brought to bear in “a kind of stigmatization lite.” His claim that fat shaming is morally justified is based on idealized conceptions of agency and contexts. It only works if we assume that the reason people become fat or remain fat is that they don’t want to be slim badly enough. Indeed, Callahan says that such shaming helped him stop smoking by giving him a reason to want to quit badly enough to actually do it. These assumptions remind me of the assumptions behind breastfeeding campaigns. Quill Kukla, writing then as Rebecca Kukla, contends—rightly, I think—that breastfeeding campaigns rely on the assumption that women who don’t breastfeed are not breastfeeding because they don’t have the right motivation. Instead, these campaigns fail to increase breastfeeding because of very real limitations about breastfeeding as a working mother, as a person who moves about in public in a prudish society that sexualizes breasts and often asks breastfeeding women to remove themselves from the presence of others, and more (2006). In terms of our current investigation, these breastfeeding campaigns are based on, and fail because of, their reliance on ideal agents in ideal contexts. Only a nonideal approach could work. This is no less true for breastfeeding than for diabetes treatment.

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Callahan’s argument strikes a kind of parallel reasoning to that used by breastfeeding campaigns: if only fat folks are sufficiently motivated by deliberate fat stigma from public health campaigns and individual providers they will then comply—and always could have complied if they had only been sufficiently motivated—with idealized methods of attaining an idealized state of a slim body. The thick person can become thin. The real person can become the ideal. Like health care providers’ common injunctions to fat patients to “lose weight” by “exercising” and “eating better”, Callahan’s view assumes ideal agents who are operating under ideal conditions in committed and unwavering pursuit of the ideal state. Yet in the very real world, none of these things are the case, locally or globally.6 This criticism holds even if the ideal of health is indeed defensible and does indeed require weight loss. At worst, idealized utopic goals are inherently exclusionary: creating Paradise Island requires keeping the riff raff out. At best, we see that to be a citizen of the utopia, or patients in a health care system, one must be constantly striving to live up to a narrow set of ideals that may not have been crafted with one’s very real life in mind. Patients who cannot achieve utopic ideals of health because they live in a nonideal world will be seen as failed patients. They always will be under an ideal conception of health. This is particularly the case when it comes to the way fatness fits into dominant conceptions of health and disease. A utopian ideal of health that includes only healthy bodies and defines fatness as unhealthy will position fat people as unhealthy and as bad agents (bad citizens of the utopia). They will be left out, either (1) literally excluded as doctors discount them as noncompliant/ nonadherent and “fire them” from their practices or refuse to treat them until they lose weight,7 or (2) doomed to fail by virtue of the way that methods for achieving the established ideal of small bodies fail to account for the very real world.8 But what conception of health underpins this notion of small bodies as healthy?

6  See Reiheld (2015) for more on this, in which I lay out why global anti-obesity public health campaigns run by the WHO, and anti-obesity campaigns in specific regions or nations, are all too likely to go awry for the same reasons: individualization of responsibility, reductively simplistic medicalization of fatness, and failure to account for specific contexts. 7  An informal survey of 1096 UK physicians found that 54% said National Health Service (NHS) should have the right to withhold non-emergency treatment from patients who do not lose weight. Fat patients have already been denied operations such as IVF, breast reconstruction, and a new hip or knee in some parts of England; 25 of 91 primary care trusts surveyed had introduced treatment bans or restrictions on obese patients (Campbell 2012). I have been asked to advise on several cases in which treatment was explicitly denied to fat patients until weight loss occurred, with little or no support for weight loss and also with no guarantee of ever accessing that care. Delays in care are still denials of care; they’re just conditional denials. Gina Kolata (2016) describes the worse care that fat patients receive from doctors who attribute illness to fatness that may be totally unrelated to body size, and who reject fat patients. 8  See Reiheld (2015) for an overview of literature demonstrating the failure of diets to routinely produce sustainable weight loss for the vast majority of persons.

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12.2.1  B  iostatistical Theory (BST) of Health as Ideal Theory, and the Construction of Obesity as a Disease Arguably the most influential conception of health in medical science and public health—with their emphases on measurement, tracking, and classification—is that of health as a natural kind representing a sort of built-in norm for a species. Like the ICD, this also transcends national borders, definitionally applying to all humans. One of the most clearly expressed and influential versions of this theory is Christopher Boorse’s (1977; 1997) Bio-Statistical Theory (BST), under which “health” is a statistically “normal” function, and is conceived of as the absence of disease. What, then, is disease? As Boorse (1997) put it in summarizing his own position from two decades earlier, “disease is only statistically species-subnormal biological part-function; therefore the classification of human states as healthy or diseased is an objective matter, to be read off the biological facts of nature without need of value judgments” (4). Boorse describes his BST as a kind of “naturalism” as opposed to “normativism”: where the former finds health and disease to be empirical, objective, and value-free, the latter includes the notion that health judgments include value judgments. This conception of health was not so much argued for de novo by Boorse, as it described a then- and now-dominant view that Boorse also normatively endorsed as the correct view of health and disease.9 The BST found its place most prominently in the bioethics work of Norman Daniels. Daniels’ 1985 classic Just health care advanced the Rawlsian view that a commitment to equality of opportunity supports using society’s resources to provide health care that restores members of society to normal function. It should come as no surprise that a health care justice view rooted in Rawlsian ideal theory of justice partners so smoothly with this ideal theory of health. And it is indeed an ideal theory of health, perhaps the most idealized. Here we have what might be a paradigm case of an ideal theory of health as ideal theory as described by Mills. Boorse deliberately set out to create an idealized description of health that abstracts from real world conditions. In so doing, he also creates an idealized model of species-normal function that is easily moralized and can be deployed to assess both patients’ efforts to achieve it and society’s commitment to support it. To do so, Boorse takes as his reference class the human species, though he could have chosen other reference classes that might have different results for what counts as a disease for different types of bodies (Kingma 2007). The medical conception of obesity—and numerous other diseases—is enormously influenced by the BST. This conception has shifted over time, moving from obesity as a mere risk condition to obesity as a disease. For much of the twentieth century, if fatness was considered a health issue at all, it was considered a risk condition that might at worst elevate the likelihood of actual cardiovascular diseases or 9  Boorse himself bemoans that his view has more often gained currency as a “stalking horse” for those in the medical humanities than because it is used approvingly, though I argue that many clinicians and bioethicists in fact subtly adopt this and other ideal concepts of health.

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diseases of joints. The shift to naming it “obesity” and considering it a disease was gradual over the end of the twentieth century and into the beginning of the 21st. It was not until June 18, 2013, that the American Medical Association (AMA) House of Delegates finally voted to medicalize obesity to the level of a disease. Medicalization occurs when a human condition comes to be seen as a fit subject for medical concern. There are various degrees of medicalization that imbue human conditions with different ontological states that have corresponding levels of ill health. Medicalization often reflects and reinforces social power structures, though it can also disrupt them (Reiheld 2010). The more heavily medicalized a condition is, the greater its bioethical implications: with increasing ill health, providers and patients both may be seen to have increasingly stringent moral obligations to address ill health. Thus, it matters when a condition is medicalized first from simply a way that people are into a risk condition, or from a risk condition into a disease. This is the progression of Western medical views of obesity over the last 100 years or so, a progression that I have elsewhere referred to as “ontological creep” (Reiheld 2015). While obesity was once considered a risk condition for diseases and malfunctions such as diabetes and joint pain, obesity is now classified as a disease in its own right by the AMA, the World Health Organization, the US Food and Drug Administration, the US National Institutes of Health, and the American Association of Clinical Endocrinologists. For the AMA to pass this 2013 resolution, it had to vote against the conclusions of its own Council on Science and Public Health. The Council urged that obesity not be considered a disease “mainly because the measure usually used to define obesity, the body mass index (BMI) is simplistic and flawed. Some people with a BMI above the level that usually defines obesity are perfectly healthy while others below it can have dangerous levels of body fat and metabolic problems associated with obesity” (Pollack 2013). Note that before the resolution, it made linguistic sense to say that some people defined as obese are “perfectly healthy.” After the resolution judging obesity a disease, it is nonsensical to say that some people defined as obese could be “perfectly healthy” since they are by definition now diseased. But let us not lose the trail, here. For we are discussing the ideal theory of health which is the BST, and its connection to obesity. It is the BST that makes it seem plausible to use a reductive statistical measure like BMI to demarcate the diagnostic criteria for a disease state; it also made it plausible to do this when obesity was a mere risk condition. What is BMI, and why is this a problem? BMI is essentially a measure of body size, and body size alone. It does not measure function or body composition. Rather, it is a ratio of weight to the square of height: weight(kg) /height(m)2. The Centers for Disease Control and Prevention (2017) refer to BMI as a “screening tool.” However, in both the rhetoric of the AMA and in clinical practice when providers speak to patients, BMI, weight, and visual assessment of body size are used to counsel patients to “lose weight” on their own recognizance. Patients are then held responsible or “noncompliant” if they return having gained weight or not lost weight in order to bring their BMI into alignment with BMI diagnostic categories. According to the CDC (2017), a BMI under 18.5 falls within the underweight range, BMI 18.5 to 24.9 is normal/healthy weight, BMI

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25.0 to 29.9 is overweight, and BMI 30.0 or higher is obese. This isn’t restricted to the American context: the World Health Organization’s ICD-10-CM code E66 frames obesity as BMI over 30, as well, and the catch-all category for non-metabolic disorder obesity, E66.0, is a simplistic diagnosis of “obesity due to excess calories.”10 Furthermore, obesity is frequently subdivided into categories, with Class 1 obesity being BMI 30 to 34.9, Class 2 being BMI of 35 to 39.9, and Class 3 (“extreme” or “severe” obesity) being BMI of 40 or higher.11 On the CDC’s website bearing this information, a blue-highlighted box reads “BMI can be used as a screening tool but is not diagnostic of the body fatness or the health of an individual” and recommends that trained health care providers should perform appropriate assessments. Yet all too often, BMI and body weight are the primary diagnostic consideration. Indeed, the Mayo Clinic explains Obesity treatment in the following way, exemplifying provider practice and patient education: “the goal of obesity treatment is to reach and stay at a healthy weight” (2019). While the Mayo Clinic notes that a small amount of weight loss in the range of 5–10% of body weight can have positive health effects, it goes on to say that “the more weight you lose, the greater the benefits.” The focus here is less on holistic health indicators than on body weight simpliciter. This is typical of the way that fat patients experience encounters with health care providers under the WCHP, and is not limited to the US.  The WHO (2020) and the UK National Health Service (NHS)—which explicitly says that “BMI is a measure of whether you are a healthy weight for your height” (NHS 2019)--are just a few of the organizations beyond the US border that define obesity in similar ways using body weight or BMI as sole metrics. This should come as no surprise given that BMI was originally designed as a population health metric, using information that could be harvested from public databases such as height and weight on drivers’ licenses. We see only what we seek; we seek what can be measured. And

 The ICD-10 is still in use. The ICD-11 does not go into effect until 1 January 2022. It somewhat improves on the stigmatizing language of “obesity due to excess calories” with “abnormal or excessive fat store secondary to different causes including energy imbalance, drugs, and genetic disorders.” This definition presents new and different problems. For more on that, see Hebebrand (2020). For more on the excessive simplifications involved in the framing of obesity globally and in the U.S., see Reiheld (2015). 11  Some ways of classifying obesity start “severe obesity” at a BMI of 35. This is the cutoff chosen by University of Washington hospitals as a contraindication for ventilator usage during the COVID-19 pandemic. A passage at the very end of UW Medicine’s ECMO Referral Policy for patients with COVID-19 reads as follows: 10

Relative Contraindications (may become absolute contraindication under institutional-­ specific resource scarcity, e.g. shortage of staff, beds, supplies) • Obesity BMI > 35 • Immunocompromise • No DPOA or legal medical decision maker available

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when we are using a biostatistical theory of health and disease, of course we can only construct health and disease for what can be measured on a population basis.12 As Elselijn Kingma (2007) notes, the BST requires a reference class in order to develop a statistical norm for part-specific function. Boorse himself chose species, but broke the reference class up into an age group of a sex or a race of a species. Kingma argues that the choice of reference classes is not value neutral, even if statistical analysis once reference class has been chosen could be said to be objective and empirical. We can see this with obesity: if we choose a different reference class—for example, folks within a certain BMI range—we may get a very different notion of which functions are “normal.” By ignoring the possibility of body size ranges as distinct reference classes, and working from the reference class of all bodies (or sometimes, it seems, just slim ones) what we get is a definition of health that sees larger bodies as definitionally diseased. Healthy fat folks become literally inconceivable under such a conceptual scheme. One might at this point be tempted to think that the problem with a theory of health is that it smuggles in values to an objective claim about scientifically assessable and allegedly achievable health outcomes. This would be incorrect. It is not the presence of values in a conception of health that makes it an ideal theory. Rather, it is the degree to which the conception of health is identified distinctly from the nonideal world, and for which judgments of whether or not a person is healthy are detached from the nonideal world in which we live. It is not only about the content of the theory, but about (1) the method of its application, which ignores the whole shape of the real world in which we live and takes knowledge of that real world as a distraction from truth rather than a source of truth (Tobin and Jaggar 2013a), and (2) about the construction of agents with idealized capacities who do not work the way we really work. (Mills 2005; Jaggar 2015). A view like the BST is a pre-requisite for the classification of obesity as a disease based on BMI or even based on statistically normal notions of bodily function. The way that providers and bioethicists all too often advocate treating fat folks is ideal theory as method, abstracting the individual from their context and individualizing responsibility for health. This is part and parcel of a pernicious value system called “healthism” which depends upon ideal theories of health with ideal methods and ideal patients.

 One might ask, tongue only somewhat firmly in cheek, what becomes of biostatistical measures of normality when the normal shifts, as when many more people in a population have larger bodies than before. Daniels’s use of species-typical function gets around this somewhat, and is drawn from Boorse’s own work. Boorse explicitly reiterates that normal part-specific function is about “species design” (Boorse 1997, 39).

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12.2.2  Healthism and Ideal Theory The term “healthism” was coined by Robert Crawford (1980). It is a complex notion that fundamentally situates health and disease at the level of the individual, as well as solutions for disease. It elevates health to what Crawford called “a super value”, with healthism being “the preoccupation with personal health as a primary— often the primary—focus for the definition and achievement of well-being” (1980, 368). While Crawford analyzed healthism in the context of popular holistic health and self-care movements,13 what he identified is a value system that is compatible with an idealized conception of health and that has particularly pernicious impacts on health care providers and patients who do not place health above all other values or who have nonideal conceptions of health. After all, to the health idealist, nonideal conceptions of health appear not to be conceptions of health at all. Think of Callahan’s rejection of anti-shaming arguments—which focus on the mental health of fat patients and the disordered eating that results from close surveillance of eating and exercise—on the grounds that such harms are justified to eliminate obesity. We should also, though, have in mind a new argument that has been making the rounds on the bioethics circuit. In a paper presented in 2019 at multiple bioethics conferences in the U.S. and in Europe, Cristina Ritchie makes an argument that is only possible with ideal theories of healthism and the BST-based WCHP.  She pits feminist bioethics, which takes seriously the suffering of fat folks as a result of relentless medical imperatives for weight-loss, against public health. Ritchie approvingly claims that public health, …makes determinations about health based on objective data and information measurable in quantifiable outcomes such as quality-adjusted life years and disability-adjusted life years. Public health has an essentialist epistemology which makes universal statements about the effects of diseases on all women. Personal feelings towards being fat may be positive, while objectively being fat can be harmful (Richie 2019).

The view of public health that Richie advances here is a straightforwardly ideal one. Like the BST, there is a claim to public health being value-free or value-neutral. There is also explicit endorsement of the kind of flattening that is typical of ideal theory: an essentialism that deliberately ignores differences, seeking to make “universal statements” about “all women.” Ritchie’s work emphasizes the kind of clinical and moral attitude that results from ideal theory: the attitude that attention to health is the primary concern we ought to have, that attention to feelings always comes second, and that being fat is to be avoided. We see this clearly at the end of her paper where she says that taking seriously the concerns of fat women about the harm done to them by weight-loss imperatives is “in direct contradiction to well known facts about the health risks of being overweight”, and that feminism must surely support both freedom from patriarchal beauty pressures, “and a healthy weight.” She closes by saying “feminism must accept women of all healthy sizes”  Healthism has been an indispensable tool for people analyzing diet culture and the way we think about eating (Germov and Williams 1996; Gramaglia et al. 2019).

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(Richie 2019) with a clear implication that it should not accept women of some apparently easily determined “unhealthy” size. Ritchie’s work embodies the kind of clinical and moral attitude that results from ideal theories of health that use BMI to position certain body sizes as diseased, combined with healthism: • That attention to health is the primary concern we ought to have • That attention to feelings or other forms of welfare and other values always comes second • That being fat is to be avoided. Knowing Ritchie, I don’t think she would disagree with this characterization. She might not even find it to be a problem. In this sense, I think I have done right by her view and represented it fairly. But if so, this view is deeply troubling. As an example of ideal theory and healthism in action, it is nearly perfect. As an example of public health ethics, it is far from perfect. Ritchie’s ideal universalizing, essentializing version of public health is not at all the version of public health that has emerged in the last decades, or that is found in documents from the American Public Health Association. While Ritchie’s version of public health is essentialist, all-encompassing, universalizing, modern public health takes a much more nuanced view. Rooted in the very real world of nonideal agents in nonideal circumstances, modern public health emphasizes a complex of considerations known as “social determinants of health” (APHA 2020; CDC 2020; Valles 2018). These include education, housing, income inequality, workplace safety, and more. Perhaps an ideal theory of public health would require us to look to the “effects of diseases on all women” without making any distinctions about how some women are affected also by attempts to eliminate those diseases, or are able to live flourishing lives while in the conditions labeled as a disease. But a nonideal theory of public health will pay attention to just such complicated distinctions. The healthism ascendant in Richie’s argument is also ethically troubling. Like Callahan’s anti-shaming argument—which Ritchie references in her paper—there is a distressing unconcern for the harms of anti-obesity campaigns and the dominance of the WCHP. Theoretical methods such as feminist bioethics and fat feminism that are concerned with fat women’s overall well-being on a variety of values beyond health as well as health, and which acknowledge the harms of the WCHP, are presented by Ritchie as against the interests of fat women. Ritchie’s rank-ordering of fat women’s interests puts an idealized conception of health—with larger body size as a disease state—in the position of a super value. The interests of fat women have been boiled down to an interest in no longer being a fat woman. This is why Ritchie can feel comfortable arguing that “feminism must accept women of all healthy sizes” (my italics). Recall that an idealist’s utopia is someone’s dystopia. Ritchie’s utopia has no place for fat women. The Weight-Centered Health Paradigm will always exclude fat persons from health and, as I’ve mentioned before (see fn 6), even from health care, until fat patients have become less fat. Any attempt by feminist bioethicists and fat women to draw attention to the harms of anti-obesity campaigns is seen as, itself, a harm to fat patients who should be compliant with

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those campaigns in pursuit of health uber alles. It’s no accident that Ritchie’s healthism goes along with an ideal theory of health, and of public health. We would do well to think of healthism as dependent on an ideal conception of health: only an Ideal, which avoids the “messiness” of the Real, could plausibly be positioned as a super value. Callahan’s advocacy of fat stigma in the clinic and in public health as necessary to tackle the “elusive” health problem of obesity perhaps unintentionally echoed Crawford’s criticism of this mindset when Crawford says “The social effort to gain control over the part of the human experience captured by the concept of health remains elusive” (1980, 365). It is this social effort that Callahan and so many bioethicists and health care providers have committed to, full speed ahead, damn the torpedoes. Of course, the torpedoes aren’t coming for them in their capacity as providers and bioethicists. The torpedoes are coming for the patients. As Crawford asks in the epigraph of this chapter, “What explains how the problem of ‘health’ is understood at a particular historical moment? What is the process by which cultures define certain activities, individual and collective, as essential for health? Why are other activities excluded or neglected?” (1980 367). Though Crawford is not a philosopher, his question is paradigmatically philosophical. He asks us to question not only how we achieve some value, but how we come to value that thing as something to be achieved. We should ask this no less of our ideals for body size and the medicalization of obesity than for our ideals of health more generally. One serious and recurring issue with medicalized conditions under idealized conceptions of health is the kind of shift in ontological status that occurred with obesity, as I described above when discussing the AMA’s 2013 shift. Obesity is just one of many conditions for which an idealized conception of health has facilitated “ontological creep” from risk condition to disease (Reiheld 2015). By “creep” I mean the verb “to creep” as in to move from one area to another almost without detection. Ontological creep in this case is a shift in the ontological status, the beliefs we have about the nature of a thing or state of affairs, in a way that seems reasonable, may or may not be deliberate, and can occur with or without systemic endorsement. When the American Medical Association and other professional organizations labeled obesity as a disease, offering their systemic endorsement, they captured a belief that had already shifted without it. Ontological creep is a predictable consequence of healthism. In the years after coining Healthism, Crawford continued to work on the implications of health as a super value, developing the notion that the meaning of health shifts from the results/ outcomes of a healthy lifestyle to the lifestyle itself: “the more the achievement of health is defined as a moral project, the more people are likely to confuse means with ends” (Crawford 1987, 104). We’ve seen this ontological creep with high cholesterol, which has moved from a condition that makes us wary about cardiac events to one that requires treatment in its own right, sometimes at great cost and some risk to patients (Reiheld 2008). The question of how patients interpret risk under such situations is directly relevant to the conception of health we are using. As Juaho (2019) notes, “risk adopts an ambiguous position between health and illness/disease.” (2019, 867) Juaho found that the “risk experience” for people diagnosed with high cholesterol differs from that of a chronic illness experience.

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Rather than “patients-in-waiting suffering from a proto-illness” study participants with high cholesterol presented themselves as actively trying to avoid becoming patients through a responsible regimen of personal health care. These are “chronically healthy individuals”: people positioned as potentially ill but not yet ill, and in constant interaction with the medical system. To what degree are all patients positioned as “chronically healthy” with respect to body size, especially now that obesity has shifted from a mere risk condition to a disease state, with numerous professional organizations including the American Medical Association endorsing this shift? After all, any of us could become fat.14 We should precisely anticipate that ideal conceptions of health, combined with healthism, would result in 1. The ontological creep that manifests in risk conditions becoming disease states and in the very possibility of the notion of “the chronically healthy”—those always already potentially ill, and 2. The moral creep of health as a super value that endorses constant evaluation of life choices as to their effects on health. We should anticipate this because, as Mills noted in his general critique of ideal theory and we discussed early in this chapter, idealized descriptions very often become idealized norms which then tell us how agents ought to behave and give us standards for judging those agents.

12.2.3  It’s Not Even Healthy to Make Health About Body Size Excessive focus on body size as a health problem is, itself, an enormous deficit of ideal thinking that does not serve even ideal theories of health. In Jaggar’s work on nonideal theory and education, she talks about how shifting the methodology to a more naturalized and less ideal theory would mean that attempts to improve the lives of children do not begin with the concerns of wealthy parents, but rather the concerns of poor parents. Rather than addressing obesity by banning large sugary drinks—solutions which fundamentally blame individuals for their choices and so respond by restricting individual choices—we should focus on providing physical education during the school day and after-school sports programs, Jaggar advises (2015, 125–6). But we can go farther than this methodological restructuring when thinking about how fat folks fare in seeking medicine. Rather than worrying about the obesity epidemic, we should worry about whether fat people can even get medical care, and should address the biases that lead providers to reject patients unless and until they lose weight. We worry about whether patients are being ideal agents: appropriately compliant, kind to health care

 For more on this, and my argument that clinical and broadly social microaggressions that discipline unruly fat bodies are aimed at not only the fat but also the not-yet fat, see Reiheld (2020).

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providers, never angry at being repeatedly shamed about their bodies, not just trying to follow doctor’s orders to lose weight but actually succeeding. Instead, we should be worrying about whether they can get access to medical care for all their health needs regardless of body size. We worry about whether fat patients are adequately monitoring diet and exercise at all times. Instead, we ought to worry about the way that constant monitoring of diet and exercise is disordered. We worry about whether we are shaming fat patients enough, or even just riding them relentlessly enough about weight loss. Instead, we ought to worry about what the daily suffering of fat persons is like in this world where medicine justifies society’s ubiquitous social and emotional harms to fat folks. As Jaggar says, “The worst way a method can fail is by rationalizing principles that legitimate injustice or wrongdoing.” (2015, 114) Our utopian ideal concepts of health, our ideal methods of achieving our utopia, and our ideal concepts of perfectly rational agents all play into healthist judgments using particular notions of health. These judgments are unforgiving: fat patients become bad patients, providers who don’t use a weight-centered health paradigm become bad providers, and feminists who accept people of any body size regardless of health become bad feminists. But these are bad judgments, and we can do better. What alternatives do we have, if I am right that these issues are rooted in ideal theory and not just in specific theories of health? For this, we must turn to nonideal theory.

12.3  Nonideal Theory and Method Genuinely nonideal theory will take account of the very real, nonideal world in which we live. It will have nonideal agents, nonideal models and concepts, and nonideal conditions and methods. It will not simply acknowledge nonideal agents and conditions in the pursuit of ideal models. We cannot retain some aspects of ideal theory and not others. The gravitational drag of the ideal conception of health or body size is so great that it will continue to pull our reasoning back into idealized agents and idealized conditions, as well. Jaggar and Tobin offer us richly developed models of nonideal method that take seriously the knowledge of people actually affected. The method? Something they call “fieldwork” (2013a and b). Fieldwork can be empirical, but it can also be anticipatory, looking ahead to what different people will need from a model. One way fieldwork can be anticipatory is the criterion of “followability in thought”: the need for people to be able to understand and utilize whatever reasoning is used in justifying claims (Jaggar 2015, 112). But followability isn’t just cognitive. It’s also practical: only proposals that are followable “in the sense of being real possibilities for action in the relevant sphere” will do. So strong is this criterion that “no model or practice of moral justification can be rational in a given context if it prescribes a course of action that is not feasible or realistically possible…” (Tobin and Jaggar 2013a, 389).

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To be followable in both thought and practice, reasoning toward justification of any theoretical conception or normative recommendation must follow a method that is more likely to produce followability. Attempts to develop such conceptions and recommendations must be: 1. Intersubjective (Jaggar 2015, 119–120): the theory needs to be run by other people, and we need to be open to changing our minds when people disagree 2. Empirical, not hypothetical (Jaggar 2015, 120–121): we cannot simply assume that we know or can intuit what marginalized and vulnerable populations need, but rather should actually find out; this is part of the “fieldwork” that Tobin and Jaggar advocate 3. Inclusive (Jaggar 2015, 121–122): this is especially important for followability. Jaggar notes that Rawls’s original position is “clearly designed for philosophers rather than ordinary people”, and she and Tobin (2013a) argue that rules for civil discourse often rely on accounts of the moral domain, moral subjectivity, and moral reasoning that purport to be culturally neutral and universal but in fact embody moral perspectives specific to modern Western cultures. 4. Fitted to specific contexts (Jaggar 2015, 122–123): Justification always occurs in particular contexts, and followability in particular is always relative to particular audiences on particular occasions. This situatedness requires shifting our ideas of how we develop moral knowledge (Tobin and Jaggar 2013a). 5. Cannot be entrusted to philosophers alone (Jaggar 2015, 123). This explicitly means that philosophical models must incorporate multidisciplinary scholarship (Tobin and Jaggar 2013b), and connects back to (2). Perhaps nowhere is this more true than in bioethics, since the entire notion of our field is that reasoning on health and the provision of health care is not best done by health care providers, alone. Nor, presumably, by philosophers alone. Nor by patients alone. 6. Must be Reflexive (Jaggar 2015, 123–4): This is a methodological concern that requires us to take a meta-view of our own theories in order to “help us to stay modest and humble, to remember that if our conceptions of justification are useful at all, they are useful only for particular contexts, not for all times and places” It is not merely that we reason in a nonideal world. Rather, our reasoning must be tailored to the fact that we reason in a nonideal world. To do otherwise is to create ideal theories that go terribly wrong. Instead, we must pursue nonideal theories that embody intersubjectivity, empiricism, inclusivity, contextual specificity, and reflexivity which are not entrusted to any one set of knowers. Arguments about fatness that deliberately exclude the knowledge and experience of fat persons about their own lives and bodies (Callahan 2012; Ritchie 2019) go wrong in exactly this way. They purposely and explicitly privilege the knowledge

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claims of providers, public health experts, and bioethicists.15 Such an approach is both epistemically and ethically wrong.

12.3.1  N  onideal Theory and Health: Humility, Intersectionality, and Social Determinants of Health Like other forms of ideal theory, healthism and its reliance on ideal conceptions of health are extremely damaging to actual attempts to pursue broad notions of well-­ being situated in a nonideal world. Crawford (1980) argued that the ideology of healthism actually undermines efforts to improve sensible conceptions of health and well-being because even though it may help some people to make beneficial changes in their lives, …it may in the process also serve the illusion that we can as individuals control our own existence, and that taking personal action to improve health will somehow satisfy the longing for a much more varied complex of needs. As such, healthism functions as dominant ideology, contributing to the protection of the social order from the examination, critique, and restructuring… (368–9)

Like many medical sociologists, Crawford is acutely aware of what we now refer to as “social determinants of health.” Social determinants of health are features of the society in which we live that have a very strong effect on health outcomes, often requiring extraordinary individual effort and resources to overcome if overcoming them is even possible. These range from the kinds of jobs that are available and the risks they pose and benefits they do (or do not) provide, to the pollutants to which we are exposed and nutritional and exercise opportunities available to us based on where we live and how our cities and towns are built. While these may be experienced by individuals (Crawford 1980, 375), they cannot be remedied solely by individual behaviors. And yet too often, medicine and public health act as though this is the case. We see this with startling clarity when recommendations for responding to fatness individualize responsibility16 onto the patient; when provider instructions to

 Some other paper might fruitfully consider whether part of the problem with construing fatness as a disease is that the belief that fatness is bad underdetermines the research on fatness. Studies which look for co-morbidities with fatness find them. Would studies which look for co-morbidities with slimness find them? Studies which look for low fitness in fat folks find it. But studies that even consider the possibility of “fit fat” folks seem to find that, as well. A fruitful avenue of analysis for some other bioethicist at some other time might use as a model Okruhlik’s (1994) lovely paper examining the impact of gender bias on what questions are asked in scientific research, and on how data is interpreted. Such a paper would be more a philosophy of science paper than this one aims to be. I am indebted to Barrett Emerick for our discussion on this point, and to Dan Hicks and Catherine Womack for their ongoing analysis of obesity research, and to Lindo Bacon and Paul Campos for their work in these areas. 16  See Reiheld (2015) for a detailed discussion of the individualization of responsibility in global public health and clinical responses to fatness. 15

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change diet and exercise routinely fail to account for how people actually live or for other notions of well-being that might be more important than weight loss. So, what would health and public health look like as nonideal theory? The content of nonideal theories of health is unclear. But the method and boundaries are much more straightforward. In what follows, “us” refers to bioethicists and health care providers. In a nonideal theory of health, there would be deliberate stakeholder involvement. Health care providers, and policy makers, would always keep going back to the patient. But not only to some idealized notion of the patient in their heads based on some “reasonable person standard” like that developed in the classic informed consent case of Canterbury v. Spence (1972). The requirements of inclusivity and empiricism drive this move beyond an idealized patient. It must be the patient in front of us who we consider. To do this, we need to be aware that patients often will not share their actual concerns if they have learned over the years that those concerns, coming from them, are liable to be ignored. Epistemologist Kristie Dotson (2011) refers to this as “testimonial smothering.” This is just one difficulty with determining what patient concerns are, though reaching out to more and more patients and using language that indicates one is receptive can help enormously in soliciting authentic and trusting patient testimony. Another difficulty is that we do not only need to consider the patient in front of us, for not everyone will come before us. The burden is on us to take measures to discern the concerns of those most affected by our theories, and to build their concerns into our theory, indeed to make sure they have a role in theory-building. I have grown puzzled that this step is left out of theorizing, given the widespread formal adoption of concepts like evidence-­ based medicine (EBM) in medical practice and public health, and like reflective equilibrium or the theory-practice cycle in philosophy and other humanities disciplines that feed into bioethics. Alas, the epistemic hierarchy between provider and patient is clear and entrenched: “[health care providers] are considered to be more credible than their patients to decide what medical options would be in the latter’s best interests.” (Buchman et al. 2017, 33) In this epistemic hierarchy, patients complain to doctors who know and doctors instruct patients who comply. Alas, this is the way it is, but it is not how it ought to be. For all of the reasons we have discussed, this simply will not cut it epistemically or ethically. Ideal theory will not do, nor will ideal conceptions of patients and doctors. We need nonideal theory rooted in the real world, and nonideal conceptions of agents and their contexts. As Jaggar argues, we must “begin with the problems facing those who are marginalized on society’s underside” (2015, 125). For our purposes, this would mean beginning with those who are fat and, more broadly, those who are disabled and those who are made ill—positioned as sick—by conceptions of health, psychiatric or otherwise. Interestingly, there is some overlap between those who are marginalized by conceptions of health and those who are marginalized by society as a whole. This ought to make us suspicious of ourselves, and very reflective indeed. Such marginalizations are overlapping and interlocking features since illness is stigmatized and health is valorized. Public health efforts that reject individualization of responsibility and focus on social determinants of health

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can help us to remember that being marginalized makes us ill, but there is a different kind of duty to remember that being ill makes us marginalized. In paying attention to marginalization, it is imperative that we remember that individuals who are members of marginalized social groups may well be members of more than one marginalized social group. The struggles of being a member of multiple groups are not simply additive but synthetic. Work by Black feminists and womanists has been deeply influential in exploring this idea, and the erasure of people with multiple group memberships, beautifully captured in the title of the foundational anthology All the women are white, all the blacks are men, but some of us are brave (Hull et  al. 1982). Legal theorist Kimberlé Crenshaw (1985) described this most famously in the case of Black women who experience workplace discrimination not merely as women, and not merely as a Black people, but as Black women. It may be, she argued, that there would not appear to be discrimination against Black women if one compared the average treatment of men and women when most of those men and women were white, nor might there appear to be discrimination against Black women if one compared the average treatment of Black employees and white employees when most of each are men. “Single axis analysis”, as Crenshaw called it—like gender alone or race alone-simply does not capture what happens to Black women. Indeed, in terms of ideal theory and nonideal theory, we would call “single axis analysis” ideal theory. Only by looking specifically at the treatment of Black women in the workplace can we see that they are treated worse than white women and worse than Black men. While Crenshaw’s argument was a legal one against using only the primary categories of race or of gender when filing discrimination complaints, the nonideal theory of intersectionality that Crenshaw developed has been deeply influential. The term “misogynoir” has come into usage since 2008 to capture this uniquely anti-Black misogyny (Bailey and Trudy 2018). A nonideal theory of health, and of patients and providers, will make room for intersectional analyses. Indeed, modern public health’s emphasis on social determinants of health and their concatenations goes a long way toward doing so. As much as there is in common between fat folks in terms of the lens through which providers view them, different health and beauty stereotypes come into play for fat Black women than for fat white women and fat Latinas and fat Southeast Asian women and fat Native American women. When it comes to intersectional analysis, context of agency matters as much as stereotypes about agents. Wealthy fat women and women with good health insurance who happen to live in areas with multiple health care providers may be able to visit multiple doctors until they find one that treats them well rather than reducing their complaints to an etiology of fatness or viewing them as lazy and noncompliant for remaining large. By contrast, poor fat women and fat women living in rural areas or in urban areas with scarce transportation and few local clinics will find that they must accept whatever providers they happen to be able to go to, if indeed this is an option at all. A nonideal theory of health will require bioethicists, providers, and public health experts to account for agentic and contextual factors such as these. Intersectional thinking must be baked into the

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“fieldwork” Jaggar urges us to undertake, beginning with our attention to the problems and needs and real—not ideal—contexts of marginalized persons. In a nonideal theory of health, there would also be deliberate humility about expert knowledge (the idea that patients cannot be knowers about health would be suspect on its face), and deliberate humility about hierarchies of expert knowledge (the idea that a doctor’s knowledge must be superior to a nurse’s or a bioethicist’s, or that a bioethicist’s knowledge must be superior to a provider’s knowledge). This kind of humility is a companion virtue to intersectional thinking, especially since epistemic hierarchies also exist racially and economically. It is all too common for providers to assume that black patients are uneducated or that rural folks are ignorant just as it is common for providers to assume that fat folks are lazy and noncompliant. The processes for developing theories and formulating justifications for them might well shift as contexts shift, taking into account specific aspects of nonideal agency and nonideal conditions that are more or less relevant. We can see requirements that Institutional Review Boards include community members as an acknowledgement of this kind of nonideal approach. However, the way these requirements are implemented often reinforces hierarchies, as IRBs and other such committees tend to prefer high-status community members and even retired medical professionals as community representatives. The gravity exerted by idealization often drags such nonidealizing requirements for representation back into the very problems they were designed to offset. We’ve covered several major aspects of how a nonideal theory of health might implement the aspects of nonideal theory that we’ve been discussing including epistemic humility, intersectionality, and social determinants of health. These will help us find the six elements of nonideal theory: intersubjectivity, empiricism, inclusivity, contextual specificity, and reflexivity which are not entrusted to any one set of knowers. In these ways, we can tailor our reasoning about health to the fact that we reason in a nonideal world. But what, specifically, would a nonideal theory of health do for fatness?

12.3.2  Nonideal Theory, Health, and Fatness A nonideal conception of health related to fatness will not idealize all fat people as having the same disease state or co-morbidities. It will consider intersectionalities like those described in the previous section, such as the differences in context facing fat Black women and fat White women, fat Latinas and fat Native Americans, fat men and fat women, wealthier fat folks and poorer fat folks. It will consider subtleties like the possibility of fit fat people, and fat folks who are as healthy as (sometimes healthier than) smaller folks in a whole host of meaningful ways. A nonideal conception of health related to fatness will care about how fat patients experience attempts to promote their health. It will see doctors making fat patients feel ashamed as a barrier to care rather than something that fat patients deserve as a punishment or need in the service of health or should “get over.”

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A nonideal conception of health related to fatness will have an expanded notion of the role of health and health care in people’s lives, and the importance of having the fat person’s whole health attended to. It will therefore care about whether attempts to promote weight loss are making people sicker through disordered eating. It will also therefore avoid attributing the root cause of most of a fat person’s complaints in their fatness in order to prevent misdiagnosis and missed diagnosis. By avoiding idealized conceptions of agency, a nonideal theory of health related to fatness must avoid classical judgments of noncompliance/nonadherence and will have to reconceive what it means for agents to be engaging in productive health behaviors. It will also most definitely be incompatible with healthism. It will instead allow for the development of a broad and flourishing set of values such as pleasure-­ seeking, foodways, and community that will sometimes override the value of health for agents. This certainly seems an improvement on ideal theories of health, healthism, and their effects on fat patients’ well-being. So far so good. But also, so far so vague. One contender for a nonideal theory of health that is specific to the context of weight and health, and that has already been developed, is the Health At Every Size model. The primary theorist behind this model is Lindo Bacon (2008). Bacon’s Health At Every Size model rejects health as a super value and also rejects the idealized conception of health in the BST which holds outlier bodies (“underweight”, “overweight”, “obese”) to be inherently diseased and thus incompatible with health. HAES also takes enormous pains to be empirically informed about how diets work (badly) for which people (hardly any), and to seek interdisciplinary knowledge as well as to prompt the generation of new knowledge by asking different questions, such as how people at any size can do their best to be healthy. But there’s the rub. We are still working with a conception of health, and there may be some component of the ideal conception of health, here. Certainly, Bacon embraces metricization of other health dimensions such as cholesterol, blood pressure, A1C blood levels (correlated with diabetes), and more. Nonetheless, Bacon is famously questioning the dominant ideal Weight-Centered Health Paradigm and doing so using methodology that follows Jaggar and Tobin’s recommendations more than many theories that consider fatness and health. After all, Health At Every Size sprang out of listening to those at the bottom: fat people, often women, who suffered not only under cultural beauty norms but also under health norms that made it impossible to conceive of oneself as being fat and healthy. While the obsession with weight loss and body size in mainstream medicine results in fat people being denied health care in general as providers make health care contingent on weight loss, Health At Every Size makes body size just a part of health, and makes health into a concept that can be achieved in many ways. In a sense, it shifts the conception of health so much that there may well be “many paths” from “many starting points”, as Jaggar and Tobin advise nonideal theorizing should seek to provide. That aspect of Health At Every Size is reflected in its name. So, in HAES, we have a more nonideal theory than the WCHP, by far. What might a thoroughly nonideal theory of health look like? That’s a project I will leave to someone else.

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12.4  C  onclusion: Imperfectionist Health in a World That Will Never Be Ideal Taking patient experiences and context seriously has a place in bioethics and medicine, not just in nonideal theory. Or rather, the history of bioethics and the history of medicine are a mix of nonideal theory and ideal theory. Nonideal theory always has been here. Think for a moment about the tension between public health’s persistent concern with contextual factors like social determinants of health which complicate our picture of agency, and public health campaigns’ persistent individualization of responsibility which idealize context and agency (discussed in Kukla 2006 and Reiheld 2015; as evidenced by Callahan 2012). Think for a moment also of the classic role that case studies play in both medicine and bioethics as a necessary adjunct to simplified, idealized theories of health, function, and ethics. Cases and “thick narratives”, if well-constructed,17 are where we can see why health matters, what it means to people, and what the constraints on agency and methods and even a realistic utopia might be. There is a place for nonideal theorizing in medicine, public health, and bioethics. But what attitude can we take, going forward, knowing that we live in a nonideal world? Kate Norlock reflects on ideal vs. nonideal moral conceptions in her 2019 article “Perpetual struggle.” While Norlock focuses on the “heavy knowledge”—a phrase Norlock borrows from Lisa Tessman—that harms and evil will always be with us, we might focus on the “heavy knowledge” that an idealized notion of health is unattainable in our real world. What, then? How do we go on with health and health care in the face of such heavy knowledge? We might borrow from Norlock, here, who emphasizes that we must think of “how each of us might live well, ‘doing our best’ with such heavy knowledge, and continuing to contribute individually to attenuating suffering and ameliorating states of affairs.” (2019, 7) Norlock cautions that eschewing ideal notions of what we are aiming for need not be nihilistic. And yet this is precisely the accusation levied against those who critique ideal notions of health: that if we slough off the baggage of idealized conceptions of health, of methods of being healthy, or of being good agents of health, we are left with nothing. Yet, it is in the context of the heavy knowledge that we shall be in perpetual struggle against harms and evil, Norlock argues that “We are better off with the heavy knowledge that evils recur than we are with idealizations of progress, perfection, and completeness, and if we cultivate an appropriate ethic for living with such heavy knowledge, it should not prevent us from doing our best to resist evils, improve the lives of victims, and enjoy ourselves… we can cultivate the skills of more resilient knowers in a nonideal world constituted by perpetual struggle.” (2019, 7) Similarly, I would urge that we are better off with the heavy knowledge  See Farmer (2009) for the value of narratives in public health and Chambers (1999) for the way that cases can be badly or well-constructed for specific purposes. See also Levinson (2015), who argues that engagement of the sort Jaggar and Tobin are advising might best be seen as “grounded reflective equilibrium.”

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that idealized notions of health are unattainable than we are with idealizations of progress, perfection, and completeness with health. To cultivate an appropriate nonideal ethic is to cultivate ways of thinking about health, methods of being healthy, and being good agents of health that still allow us to live well in a nonideal world. But what will this look like? Norlock advocates what she calls an Imperfectionist Ethic that “accommodates reality and plans on future vulnerabilities and neediness.” (2019, 15) Indeed, a nonideal conception of health simply must be able to accommodate the realities that patients have multiple values, that health will not and perhaps should not be a super value for them, and that both providers and patients are nonideal agents who will make mistakes and who have at best imperfect control over the outcomes of their behaviors. A nonideal conception of health will not hold up weight loss as an ideal of health, finding patients who do not achieve it to be failed patients. A nonideal conception of health will not make health care contingent on first losing weight. A nonideal conception of health will not find health care providers who treat fat patients as more than just fat to be failed providers. Methodologically, a nonideal conception of health, following Jaggar and Tobin, will take its cues from the real lived experiences of patients seeking to be healthy. Permit me, for a moment, to give you a concrete example of how nonideal, real methods and conceptions might guide a clinical encounter. While I am normally a very active fat person who hikes, lifts weights, runs, and more, I have been through intermittent sedentary periods in my life. One of these sedentary periods occurred during my final year as a graduate student. Shortly after beginning my life as a Professor, I established health care with a new provider. I had been dreading the encounter. The reason for this dread is that during the early years of my PhD, I was denied a pap smear and other gynecological services by a doctor at the student health clinic who insisted I was “too fat” to examine and needed to lose weight before I could be checked out (curiously, an independent clinic dedicated to women’s health and family planning—for which I had to pay out of pocket—had no trouble giving me the same exam). When I went to the intake visit with my new physician, now as a newly minted Professor, my shameful encounter was vivid in my mind. We did the standard medical history. She did weigh me. We did discuss my health. But we discussed my health in terms of exercise and nutrition, not with a focus on weight or body size. She did not assume that because I was fat, I must be eating poorly and not exercising. Alas, this kind of assumption is all too common in doctors who advise fat patients to “exercise more and eat better” regardless of what the patient has reported. Rather, my new physician asked me how much I exercise, and what my meals are like throughout the week. Upon understanding that I work long hours with two small children, she did not advise that I cut out all convenience meals. Rather, she gave me a concrete list of a few kinds of quick, inexpensive, healthy meals including a $6 grocery store roaster chicken, quick steamed broccoli, and a carb to feed the whole family. Instead of advising that we never get fast food, she advised not buying fried foods. And when she asked about my exercise habits and I said that I used to exercise much more, instead of saying I should get back to that, she asked what my

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habits used to be like to ensure I hadn’t been over-exercising. And then she asked what obstacles I was facing in resuming that level of activity. I told her that I felt like I was abandoning my family if, after a long day at the office, I were to follow it up with an hour at the gym. In particular, I mentioned that I thought it was unfair to my spouse, who was parenting our children while I was at work. She thought for a minute, asked if I was familiar with the local YMCA—I was not, having just moved—and asked her nursing staff to call the YMCA to check about their drop-in childcare. In short order, staff popped in to hand the doctor a note, and she let me know that the YMCA had drop-in childcare hours throughout the day and evening for $1/hour per child. This encounter positively changed my relationship with health care providers in general, and my health overall. But how is it an example of nonideal conceptions of health, method, and agency? Note that this physician’s entire approach during the clinical encounter did not focus on weight (or weight loss) as fully indicative of health. In addition, the physician sought information from the patient in a method that Tobin and Jaggar would well recognize as nonideal moral epistemology: what matters to you, and why, and what are your actual obstacles in the very real world? And then, rather than leaving an idealized patient-as-agent to figure out how to resolve those on their own, the physician provided concrete examples and advice on how to do so. But those examples and that advice were grounded in the patient’s needs, the patient’s other commitments and values, and very real contexts such as moderate income, caregiving commitments, and employee obligations. In subsequent encounters, the physician wanted to know that I was doing better than I had been, in what we might see as a version of Norlock’s Imperfectionist Ethic. Imperfectionist health care that actually pays attention to how we get from where we are to something better, without finding we have failed if we don’t achieve a narrow and exclusionary utopian ideal, is nonideal health care in the best possible sense of that term. We live with the heavy knowledge that the real world will never be ideal; patients, their health status, and the context of care will never be ideal. The theories that providers, bioethicists, and public health experts deploy shouldn’t try to be. A nonideal theory of health will be one that thickly accounts for the real world in which we must go on. A nonideal theory of health will be one we can live with.

References American Public Health Association. 2020. The nation’s health series: Social determinants of health. The Nation’s Health. http://thenationshealth.aphapublications.org/content/nations-­ health-­series-­social-­determinants-­health. Accessed 16 Apr 2020. Bacon, L. 2008. Health at every size: The surprising truth about your weight. Dallas: Benbella Books. Bacon, L., and L. Aphramor. 2011. Weight science: Evaluating the evidence for a paradigm shift. Nutrition Journal 10: Article 9. Bailey, M., and Trudy. 2018. On misogynoir: Citation, erasure, and plagiarism. Feminist Media Studies 18 (4): 762–768.

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Boorse, C. 1997. A rebuttal on health. In What is disease? ed. J.M. Humber and R.F. Almeder, 1–134. Towata: Humana Press. Brewis, A., A.  Wutich, A.  Falletta-Cowden, and I.  Rodriguez-Soto. 2011. Body norms and fat stigma in global perspective. Current Anthropology 52 (2): 269–276. Buchman, D., A. Ho, and D. Goldberg. 2017. Investigating trust, expertise, and epistemic injustice in chronic pain. Bioethical Inquiry 14: 31–42. Callahan, D. 2012. Obesity: Chasing an elusive epidemic. Hastings Center Report 43 (1): 34–40. Campbell, D. 2012. Doctors back denial of treatment for smokers and the obese. The Guardian. https://www.theguardian.com/society/2012/apr/28/doctors-­treatment-­denial-­smokers-­obese. Accessed 17 Apr 2020. Campos, P. 2004. The obesity myth. New York, NY: Gotham Books. Centers for Disease Control and Prevention. 2017. Defining adult overweight and obesity. https:// www.cdc.gov/obesity/adult/defining.html. Accessed 12 Sept 2019. ———. 2020. Social determinants of health: Know what affects health. https://www.cdc.gov/ socialdeterminants/index.htm. Accessed 16 Apr 2020. Chambers, T. 1999. The fiction of bioethics: Cases as literary texts. New York: Routledge. Clarke, S. 2015. How hospitals coddle the rich. October 26, 2015. The New York Times. https:// www.nytimes.com/2015/10/26/opinion/hospitals-­red-­blanket-­problem.html. Accessed 15 Dec 2019. Crawford, R. 1980. Healthism and the medicalization of everyday life. International Journal of Health Services 10 (3): 365–388. ———. 1987. Cultural influences on prevention and the emergency of a new health consciousness. In Taking care, ed. N.D. Weinstein, 95–113. Cambridge: Cambridge University Press. Crenshaw, K. 1985. Demarginalizing the intersection of race and sex: A black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. The University of Chicago Legal Forum: 139–167. Daniels, N. 1985. Just health care. Cambridge: Cambridge University Press. Dotson, K. 2011. Tracking epistemic violence, tracking practices of silencing. Hypatia 26 (2): 236–257. Farmer, P. 2009. On suffering and structural violence: A view from below. Race/Ethnicity: Multidisciplinary Global Contexts 3 (1): 11–28. Galarneau, C. 2018. King’s words on health injustice: What did he actually say? International Journal of Feminist Approaches to Bioethics Blog. April 19, 2018. http://www.ijfab.org/ blog/2018/04/kings-­words-­on-­health-­injustice-­what-­did-­he-­actually-­say/. Accessed 12 Dec 2019. Germov, J. and L. Williams. 1996. “The epidemic of dieting women: the need for a sociological approach to food and nutrition.” Appetite 27 (2): 97-108. Gramaglia, C. E. Gambaro, C. Delicato, M. Marchetti, M. Sarchiapone, D. Ferrante, M. Roncero, C.  Perpina, A.  Brytek-Matera, E.  Wojtyna, P.  Zeppegno. 2019. “Ortherexia nervosa, eating patterns and personality traits: a cross-cultural comparison of Italian, Polish and Spanish university students.” BMC Psychiatry 19 (1): 235. Hebebrand, J. 2020. Our definition of obesity and its impact on treatment. Obesity 28 (3): 481. Hull, G.T., P. Bell-Scott, and B. Smith. 1982. All the women are white, all the blacks are men, but some of us are brave: Black women’s studies. Old Westbury/New York: Feminist Press. Jaggar, A. 2015. Ideal and nonideal reasoning in educational theory. Educational Theory 65 (2): 111–126. Jameton, A. 1984. Nursing practice: The ethical issues. Englewood Cliffs: Prentice Hall. Juaho, M. 2019. Patients-in-waiting or chronically healthy individuals? People with elevated cholesterol talk about risk. Sociology of Health & Illness 41 (5): 867–881. Kingma, E. 2007. What is it to be healthy? Analysis 67 (294): 128–133. Kolata, G. 2016. Why do obese patients get worse care? Many doctors don’t see past the fat. The New York Times. https://www.nytimes.com/2016/09/26/health/obese-­patients-­health-­care. html. Accessed 2 Apr 2020.

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Kukla, R. 2006. Ethics and ideology in breastfeeding advocacy campaigns. Hypatia 21 (1): 157–180. Levinson, M. 2015. It’s (still) all in our heads: Non-ideal theory as grounded reflective equilibrium. Martin, N. and R.  Montagne. 2017. Black mothers keep dying after giving birth. Shalon Irving’s story explains why. December 7, 2017. National Public Radio. https://www.npr. org/2017/12/07/568948782/black-­mothers-­keep-­dying-­after-­giving-­birth-­shalon-­irvings-­ story-­explains-­why. Accessed 9 Nov 2019. Mills, C.W. 2005. ‘Ideal theory’ as ideology. Hypatia 20 (3): 165–184. ———. 2018. Through a glass, whitely: Ideal theory as epistemic injustice. Proceedings and Addresses of the American Philosophical Association: 43–77. National Health Service. 2019. Overview: Obesity. https://www.nhs.uk/conditions/obesity/. Accessed 9 Jan 2020. Norlock, K. 2019. Perpetual struggle. Hypatia 34 (1): 6–19. O’Hara, L. and J. Taylor. 2018. What’s wrong with the ‘war on obesity?’ A narrative review of the weight-centered health paradigm and development of the 3C framework to build critical competency for a paradigm shift. SAGE Open. Okruhlik, K. 1994. Gender and the biological sciences. Canadian Journal of Philosophy 20 (supp): 21–42. Pollack, A. 2013. AMA Recognizes Obesity as a Disease. New York Times. June 18, 2013. https:// www.nytimes.com/2013/06/19/business/ama-­recognizes-­obesity-­as-­a-­disease.html?_r=2& Reiheld, A. 2008. Paying for the possibility of disease: How medicalization of risk conditions affects health policy and why we must bear it in mind. Medical Humanities Report 29 (4): 3–6. ———. 2010. Patient complains of…: How medicalization mediates power and justice. International Journal of Feminist Approaches to Bioethics 3 (1): 72–98. ———. 2015. With all due caution: Global anti-obesity campaigns and the individualization of responsibility. International Journal of Feminist Approaches to Bioethics 8 (2): 226–249. ———. 2018. Individualization, access, and bias: ACOG issues new consensus call for improvements to maternal health care, but there are serious pitfalls to watch out for. April 24, 2018. International Journal of Feminist Approaches to Bioethics Blog. https://www.ijfab.org/ blog/2018/04/acog-­issues-­new-­consensus-­call-­for-­improvements-­to-­maternal-­health-­care-­but-­ who-­will-­benefit/. Accessed 12 Dec 2019. ———. 2020. Microaggressions as a disciplinary technique for fat and potentially fat bodies. In Microaggressions and philosophy, ed. L. Freeman and J.W. Schroer, 205–225. New York: Routledge. Richie, C. 2019. Fat is a feminist issue, obesity is a public health issue. XXXVI International Congress on Law and Mental Health. International Academy of Law and Mental Health. Rome, Italy. July 23, 2019. Robison, J. 2003. The ‘obesity epidemic’: An alternative perspective. Healthy Weight Journal 17 (1): 1–3. Tobin, T., and A.M. Jaggar. 2013a. Situation moral justification: Rethinking the mission of moral epistemology. Metaphilosophy 44 (4): 383–408. ———. 2013b. Naturalizing moral justification: Rethinking the method of moral epistemology. Metaphilosophy 44 (4): 409–439. University of Washington Medicine. 2020. ECMO referral policy: UW medicine ECMO support for patients with COVID-19. https://covid-­19.uwmedicine.org/Covid19%20Policy%20 Statements/ECMO%20Referral_Policy_UW%20Medicine.pdf. Accessed 14 Apr 2020. Valles, S. 2018. Philosophy of population health: Philosophy for a new public health era. New York: Routledge. Wann, Marilyn. 1998. Fat? So!: Because you don't have to apologize for your size. Berkeley: Ten Speed Press. World Health Organization. 2020. Obesity. https://www.who.int/topics/obesity/en/. Accessed 9 Jan 2020.

Chapter 13

Incarceration, Health Harm, and Institutional Epistemic Injustice Nancy Arden McHugh and Corina Cleveland

Most people, including medical professionals, know little about what it is like to be ill, aging, and/or dying in prison. Neither of us would have been aware of the health needs of people who are incarcerated if we had not been spending a significant amount of time in prisons as a professor and as a visiting student. The questions those of us on the outside should ask ourselves in our role as citizens, as well as philosophers, social justice advocates, policy makers, and physicians, are numerous and complex. Many of them bump up against what we take to be common sense knowledge about incarceration and punishment and reflect our misunderstandings of the health, health needs, and health care of people in the carceral system. Because people who are incarcerated live behind walls that intentionally make their daily lives and, thus, their long and short-term health, invisible to people on the outside, we are ignorant of the health status of people in the carceral system. The knowledge that we have about the health needs and care of people who are incarcerated is produced in such a way that their voices are not heard, bodies are not seen, and lives are not understood. This paper begins by providing background data on incarceration, aging, and health. It then engages the concept of institutional epistemic injustice by framing it as an epistemic component of nonideal theory through the work of Charles Mills and Elizabeth Anderson, and then extending their arguments to understand institutional epistemic injustice as an activity of institutional structures that is imposed on people and embodied. This embodied understanding of institutional epistemic injustice is applied to understanding the health and health care of people who are aging in the U.S. carceral system by analyzing the effects of this embodied N. A. McHugh (*) Department of Philosophy, Wittenberg University, Springfield, OH, USA e-mail: [email protected] C. Cleveland Miami University, Oxford, OH, USA © Springer Nature Switzerland AG 2021 E. Victor, L. K. Guidry-Grimes (eds.), Applying Nonideal Theory to Bioethics, Philosophy and Medicine 139, https://doi.org/10.1007/978-3-030-72503-7_13

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epistemic state on people who are incarcerated and the people who are responsible for caring for their health. We end with some key epistemic strategies derived from epistemic injustice and apply these to the health and health care of people who are ill, aging, and dying in prison.

13.1  Aging in Prison: The Data It is tempting to think that aging in prison is merely a biological process and that there is nothing unique about it. However, aging is also a social process that is mediated by the circumstances in which we live. The 2016 report “The impact of an aging inmate population on the Federal Bureau of Prisons,” issued by the Office of Inspector General of the U.S.  Department of Justice, states that people who are incarcerated are considered “aging inmates” at 50 years of age (Office of the Inspector General 2016, 1). Although for the general population, i.e., people who are not in prison, 65 years of age is the standard age that one would be considered to be elderly, the standard for most researchers for an elderly inmate is 50 years of age or older. This is because people who are incarcerated age 10–15 years faster than people who are not incarcerated. Dating back to 1982 federal and state institutions and researchers hold significant consensus in categorizing people who are incarcerated as elderly at 50 or 55 years of age.1 Of the 1,508,636 people in federal and state prisons in 2014, 280,606 were 50 years of age or older (Office of the Inspector General 2016, i). This represents a 13.8% increase from the 2010 number of 246,600. At the federal level, the Bureau of Prisons states that between 2009 and 2013 there was a 25% increase in inmates 50 years or older, while the population of inmates 29 and younger decreased by 16% (Office of the Inspector General 2016, i). Fifteen U.S. states have experienced a 40–50% increase in their percentage of inmates who are 55 years or older (Vestal 2014).2 42% of elderly prisoners are white; 33% Black and 15% Latinx, but people who are incarcerated and who are Black and Latinx are overrepresented in the elderly prison population. This mirrors the general data regarding the disproportionate mass incarceration of Blacks and Latinxs. Women make up 6.7% of the federal and state prison population, but the rate at which women are incarcerated is “increasing by an average annual rate of 3.4 percent” (Bureau of Justice Statistics 2014, 1). Of the 280,606 inmates who were 50 years of age or older, 15,509 of them are

1  One challenge with data assessing for projects such as this is that, in general, while most institutions use 50 years of age as the mark for an elderly inmate, some use 55. The same institutions will sometimes use data categories of for example, 45–54 and 55–64 in one document and then 40–49 and 50–59 in another. This lack of standardization is curious and unfortunate, but one can still find trends in data related to aging even with some of this muddiness of data. 2  Note that this age range does not include people between the ages of 50–54, who are included in the federal statistics.

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female (Office of the Inspector General 2016, i). Black women and Latinas are over represented in this population as well.3

13.1.1  S  entencing, Policies, and Criminalization of Mental Illness It is estimated that by 2030 one-third of all incarcerated individuals will be over the age of 50 (Osborne Association 2018, 2). There are a number of reasons for the increase of elderly people who are incarcerated. Much of the increase has to do the tough-on-crime policies that date back to the 1980s, with mandatory minimum sentences, longer convictions, and “three strikes and you’re out” policies (Roberts 2015, xiii). People are serving long sentences in prison and thus growing old in prison. The Bureau of Justice Statistics 2016 report states “Forty percent of state prisoners age 55 or older on December 31, 2013, had been imprisoned for at least 10 years, compared to 9% in 1993” (Carson and Sabol 2016, 1). Furthermore, more people over the age of 55 are being arrested. Between 2003 and 2013 there was a 63% increase in arrests of people 55 or older (Carson and Sabol 2016, 17). Much of this has to do with an increase in arrests for drug offenses, which increased 375% for those 55 or older (Carson and Sabol 2016, 17). In the U.S., we criminalize mental illness and mental illness can result in behaviors that lead to incarceration and/or is tied into substance abuse and arrests for drug offences. 39.6% of elderly inmates at the state level have a history of mental health problems and 36.1% of those at the federal level do (James and Glaze 2006, 4), compared to 13.8% of people 50 years old on the outside (Substance Abuse and Mental Health Services Administration 2017). Thus, there is a significant relationship between incarceration and mental illness.4 73.1% of women incarcerated at the state level and 61.2% of women incarcerated at the federal have a history of mental health problems, whereas 55.0% of men at the state level and 43.6% men at the federal level have a history of mental health problems (James and Glaze 2006, 4). In the general population we see 22.3% of women and 15.1% of men with a history of mental health problems (Substance Abuse and Mental Health Services Administration 2017). Thus, gender represents a significant difference here, one that is magnified among women who are incarcerated, and one that can be partly explained by the amount of sexual and physical violence inflicted upon women prior to and while incarcerated. 3  The last unique data set the Bureau of Justice Statistics published on women was in 2000. It is thus challenging to get specific data on women from the U.S. Department of Justice. 4  Although Blacks and Latinxs are more likely to be arrested than whites, they are less likely to be diagnosed with mental illness than whites prior to and while incarcerated. This doesn’t mean that Blacks and Latinxs are more or less likely to have mental illness, but that they are not being diagnosed or treated for it. See, for example, Prins et al. “Exploring mental racial disparities in the brief jail mental health screening” (2012) for an analysis of racial biases in mental health screening.

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13.1.2  Health Inside and Outside of Prison Like people who are marginalized on the outside (McHugh 2015), the health of people who are incarcerated is complex and compromised by the oppression they may have experienced outside of prison and the oppression they experience inside of prison. Prior to incarceration, a person’s experience with substance abuse (Office of Inspector General 2016), tobacco use (Duin and McSweeney-Feld 2005), sexual violence and other forms of physical violence (Maschi et al. 2013), living in poverty (Maschi et al. 2013), living in a violent neighborhood (Maschi et al. 2013), being under-employed or unemployed (Maschi et al. 2013), and poor health care prior to incarceration (Office of Inspector General 2016) all contribute to the accelerated aging of people who become incarcerated. While in prison, the stress of life in prison, including the threat and reality of sexual and other forms of physical violence, emotional manipulation, fear of dying in prison, uncertainty about release dates, isolation from family and friends, solitary confinement, difficulties in navigating the prison and one’s cell because of physical challenges, such as wheelchair use, inability to participate in prison programming because of age and/or medical status, and a feeling of a lack of purpose are experiences that contribute to the accelerated aging of people who are incarcerated. People who are incarcerated in the U.S. represent 25% of the HIV infected population, and progress to AIDS four times faster than that in the general population (Wick and Zanni 2009, 430). Among people who are incarcerated, end stage liver disease mortality is three times higher compared to that of the general population (Wick and Zanni 2009, 430). 33% of people in the U.S with hepatitis C are incarcerated and 40% of people with active tuberculosis in the U.S. are incarcerated (Wick and Zanni 2009, 430). Incarcerated people who are 50 years or older have an average of three chronic diseases (Rikard and Rosenberg 2007, 152) and are much more likely to have diabetes, hypertension, and pulmonary disease than younger people who are incarcerated and people 50 and older people living outside of prison (Binswanger et al. 2009, 479). Approximately “70% of inmates aged 50 years or older have a physical limitation” that affected their ability to function with daily life activities in prison (Wick and Zanni 2009, 430). Researchers and clinicians refer to these as Activities of Daily Living or ADLs. ADLs include being able to feed one’s self, bathe, and groom one’s self. In a study of elderly women incarcerated in California, 69% of them had at least one Prison Activities of Daily Life (PADL) impairment (Williams et al. 2006, 702). PADLs include the ability “to drop to the floor for alarms, stand for count, get to meals, hear orders, and climb onto the top bunk” (Williams et al. 2006, 702). To provide some context for this, “29% of elderly women in this study were assigned to a top bunk” (Williams et al. 2006, 702). ADL and PADL impairment are associated with increasingly poor health and adverse prison experiences for elderly women, including increased victimization through physical violence, increased falls, and increased depression (Williams et al. 2006, 706). Williams et al. report “63% of [elderly] women with ADL impairment and 57% of [elderly] women with PADL impairment reported falling in the previous

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year, compared with 33% with no impairment. In comparison, an estimated one-­ third of the U.S. population aged 65 and older reports falling annually” (Williams et al. 2006, 706). Thus, what we see is a rapidly aging, ill, and vulnerable group of people who are incarcerated, much of which can be contributed to oppressive conditions on the outside and inside of prison.

13.2  E  pistemically Oriented Approaches to Nonideal Theory and the Embodiment of Injustice Nonideal theory initiates from working to understand what justice and injustice look like individually and institutionally in practice, i.e., the situations in which people actually live, instead of starting from abstract and idealized conceptions of justice. Although nonideal theory was primarily framed through the lens of ethics and social and political theory, since Charles Mills’s work in The racial contract (1997) there has been a robust move to also understand the epistemological dimensions of injustice and how these epistemic dimensions of injustice mirror, replicate, and enable other types of injustice.

13.2.1  I deal-as-Idealized: The Epistemic Components of Nonideal Theory In his 2006 “‘Ideal theory’ as ideology” Mills frames ideal theory as an “obfuscatory” ideological practice that “reflect[s], and contribute[s] to perpetuating, illicit group privilege” (Mills 2005, 166). It does this, he argues, primarily through the ways that ideal theory presents its ideal of justice through ideal institutions, i.e., the “ideal-as-idealized-model” (Mills 2005, 170). This creates what Mills describes in The racial contract as a faulty epistemic state, an epistemology of ignorance and a self-perpetuating dysfunctional epistemic, social, and moral system (Mills 1997). It does this by “abstracting away from realities crucial to our comprehension of the actual workings of injustice in human interactions and social institutions, and thereby guaranteeing that the ideal-as-idealized-model will never be achieved” (Mills 2005, 170). In other words, through the ideal-as-idealized-model, dominant factions of society, who Mills describes as “signatories” (1997), are never able to see how practically and cognitively dysfunctional our social systems and institutions, such as our justice, legal, and health systems, are in terms of “how their actual workings may systematically disadvantage women, the poor, and racial minorities” (Mills 2005, 170). As ideal models, they are enabled through an “idealized cognitive sphere” that identifies instances of injustice occurring through individualized “biases of self-­ interest or the intrinsic difficulties with understanding the world,” not through

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radically pervasive injustices that have been shaped and are predicted by the system from its epistemic foundation (Mills 2005, 169). As Mills argues, the ramifications of ideal theory as a corrective for injustice run deep (2017). Its failed cognitive apparatus enables the embodiment of whiteness as it is internalized as white superiority. Through this internalized white superiority whites continue to mistake systemic racism as individual failings. For example, the police shootings of unarmed Blacks are framed in the ideal-as-idealized model as the result of poor training and individual biases or even frequently described as justified. They are not framed as the predictable result of an institution and society that at its foundation is radically racist. Thus, under the cognitive dysfunction created through ideal theory, the assumed correction is better training and training to eliminate individual biases, not substantial institutional overhaul and realignment or even dismantling. Nor is there an awareness of whiteness as a primary driver of the dysfunction.

13.2.2  Institutional Epistemic Injustice Building from a complementary framework of thinking about how idealized social institutions are not only the result of cognitively dysfunctional framings of justice, but also perpetuate epistemic and other social injustices, Elizabeth Anderson’s (2012) work has provided language for thinking about how this embedded and systemic cognitive dysfunction is a property and practice that can be ascribed to institutions, referring to it as institutional epistemic injustice. Thus, in a similar vein as Mills, she works to understand the epistemic underpinnings and enabling of injustice as it functions in and through nonideal institutions who are imagined to fit the “ideal-as-idealized model.” Anderson argues that we should think of institutions, such as educational, judicial, political, and health institutions, as epistemic institutions because these are institutions that simultaneously reflect and generate knowledge. Like Mills, Anderson recognizes that these institutions are framed as idealized pathways. Mills refers to these as “idealized cognitive spheres” (Mills 2005, 169), through which justice is established and/or enacted. Anderson argues that these institutions have epistemic injustices structurally built into them that result in testimonial epistemic injustice, an injustice that questions non-dominant persons’ capacities and efficacies as epistemic agents. Institutions that operate in a testimonially unjust manner are those that perpetuate structural “group-based credibility deficits… [such as] differential markers of credibility; ethnocentrism; and ‘the shared reality bias’” (Anderson 2012, 169). These institutional epistemic injustices are particularly insidious because they can occur even though there may not have been individual epistemic failings. Thus, there is scaling up of injustices that result primarily from institutional structures and their functioning, not necessarily from individuals. As these injustices are built into the framework of institutions, they need structural remedies to correct for institutional epistemic injustice and the accompanying injustices that arise from them (Anderson 2012, 169). Thus, again the problems are not

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ameliorated by better training for individuals, but instead necessitate substantial and foundational reconfiguring of institutions.

13.2.3  Institutions and Bodies Mills’s and Anderson’s accounts provide important insights into the epistemic structural deficiencies of institutions that result in epistemic and other forms of injustice. While both begin to point to how institutional epistemic injustice acts upon bodies, further analysis is needed, in particular, an analysis of specific institutions.5 Although many institutions impact bodies, health and carceral institutions, because of their literal access in controlling and regulating bodies, can have pernicious effects on the bodies and lives of people who exist under their oppressive structures. This is especially critical when we understand the ways that mass incarceration, health outcomes, and institutional epistemic injustice intersect with race, gender, class, sexuality, and nationality. Due to the limitations of space and the layers of analysis needed to articulate fully these intersections in their complexity, we do not provide a full accounting of all of the ways these intersect.6 Here, we work to provide an embodied account of institutional epistemic injustice to understand and to reshape the effects these institutions have on the lives and health of people under carceral control. In addition to being a structural deficiency, institutional epistemic injustice is an activity, a form of structural violence,7 that imprints itself on the lives of those inhabiting institutional space—such that they come to epistemically and physically embody the institutionalized state of oppression. Furthermore, because of the 5  Stacy Clifford Simplican in The capacity contract (2015) takes up a related challenge to Mills’s work by arguing that Mills’s critique of ideal theory, Rawls in particular, relies upon the construction of “ideal cognitive capacities as the source of inequality,” for which the corrective is the “production of heightened cognitive skills” (88). However, for people with intellectual disabilities this reliance on heightened cognitive skills as the primary source of emancipation and the construction of certain positions as “ignorant” is highly problematic because of the ways “ignorant/ cognizant maps on to morally right/wrong” (88). Shelley L. Tremain raises similar concerns about Mills’s terminology and the potential outcomes of this stance in Foucault and feminist philosophy of disability (2017). These arguments lend support for the need to understand that epistemic injustice, as an embodied account, needs further clarification. 6  Nancy Arden McHugh provides an analysis of a range of health and embodied epistemic injustice issues in relationship to mass incarceration through the experiences of women of color, including the unique experiences of incarcerated transwomen and women who are immigrants, in “Epistemic deadspace: Prisons-politics-place” (2021). 7  Structural violence is a term that originated by Johan Gatlung in his 1969 article “Violence, peace and peace research” and is now used widely in health justice to indicate the ways that social inequalities can inflict poor health outcomes on marginalized communities. Gatlung describes structural violence as: “There may not be any person who directly harms another person in the structure. The violence is built into the structure and shows up as unequal power and consequently as unequal life chances” (171).

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p­ hysical structure of some institutions, such as prisons, people living on the outside of these oppressive structures are precluded from seeing in. Their very physicality presents an epistemic barrier to those on the outside from knowing what happens on the inside. Thus, it is critical to understand the ways that these embedded institutionalized epistemic injustices shut down the ability of individuals to think, act, and live well within their structures, how they literally reshape bodies and minds within the structure, and how they create physical barriers that are conduits of ignorance to those on the outside. By identifying the epistemic injustices within specific institutions, we can begin to understand just how damaging the embodiment of institutional epistemic injustice is.8 We thus propose this embodied account of epistemic injustice embedded in specific institutions as the next type of corrective to which epistemically oriented approaches to nonideal theory can be extended.

13.2.4  A  n Embodied Account of Institutional Epistemic Injustice in Prisons Most people who are incarcerated experience epistemic injustice. One primary way that people who are incarcerated experience epistemic injustice, i.e. harm to their capacities as knowers, is through the institution’s intentional construction of feelings of helplessness. The LoCI-Wittenberg University Writing Group, a philosophy writing group that worked inside of a prison, argues that epistemic injustice “is designed to …prevent the subversive [epistemic] character that is required for a more critical epistemic lens” (LoCI-Wittenberg Writing Group 2016, 13). The LoCI-Wittenberg Writing group stated, “There is a psychology to doing time” (Wittenberg Writing Group 2016, 9). By this, they meant an inmate has to reshape their cognitive structure and practices in order to survive prison. On the surface this may not appear to be an epistemic injustice per se. On the one hand, it could indicate what it means to survive prison well, which is developing a particular type of subversive lucidity that the group refers to as “carceral consciousness,” a heighted subversive lucidity that one can develop when incarcerated, in spite of or in opposition to the epistemic injustice they experience in prison. On the other hand, the idea that there is a psychology to doing time also indicates that regardless of whether one serves their time well or not, one is cognitively reshaped by serving time. The group also claimed “No one can do a certain amount of time and not be damaged psychologically” (LoCI-Wittenberg Writing Group 2016, 11). The writing group referred to the negative understanding of this cognitive reshaping as being “institutionalized” and argued that it is much more pervasive in prison than its positive 8  As we develop an embodied view of institutional epistemic injustice we are employing arguments made by Foucault in Discipline and punish (1977) and are building upon arguments made by the LoCI-Wittenberg University Writing Group in “An epistemology of incarceration” (2016), which Nancy Arden McHugh was a member of, as well as José Medina’s Epistemology of resistance (2013) and Lisa Guenther’s Solitary confinement (2013).

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counterpart “carceral consciousness,” which requires a significant amount of intentionality to achieve. Institutionalization also gets taken on bodily through bodily habits and the restructuring of bodies. People who are “institutionalized” frequently engage in compulsive habits that they did not have on the outside, such as “ritualistic cleaning...the boiling of toothbrushes or food bowls, the unnecessary compulsive compartmentalization of personal property, and the wearing of state prison uniforms even when it is not required, such as in the evening when an inmate can wear one’s own clothes” (LoCI-­ Wittenberg Writing Group 2016, 15–16). These behaviors are the result of people who are incarcerated having little choices in day-to-day activities, little, if any, changes in daily schedules, and little, if any, change in the people they associate with. These institutionalized behaviors function as a type of substitute agency because people who are incarcerated have little control over anything else in their lives and little differentiation in their day. The boiling of bowls and toothbrushes is a way of controlling one’s environment and what goes into one’s body when a person experiences very little control over any aspect of their life. This level of institutionalization reflects the psychological and epistemological damage, caused by a lack of agency, that results in the embodiment of an institutionalized carceral state, thus embodying, in some cases literally by the wearing of institutional clothes off hours, institutional epistemic injustice. Lisa Guenther in Solitary confinement: Social death and its afterlives (2013) describes an epistemic state, “cellular embodiment,” similar to the ones described above (Guenther 2013, 183). She states In theory supermax prisoners [prisoners in long term solitary confinement] learn how to “contain” themselves; they learn how to moderate their behavior in accordance with certain rules that give them access to more or less bodily comfort and more or less living space on the basis of a punishment-reward system. … But in practice, confinement in a supermax cell undermines prisoners’ agency by blocking their experience of spatial and social depth, literally confining them to a Control Unit, where their only choices are mapped by a flow chart of automatic acts and consequences, punishments and rewards, that allow little or no room for negotiating the complexity of perceptual or social life within or beyond prison. (Guenther 2013, 184)

The supermax cell thus shuts down epistemic agency, creating institutionalized individuals, who like the toothbrush boilers and off-hours uniform wearers, bear institutional epistemic injustice on their bodies. Guenther describes self-battering, which consists of throwing oneself against a wall, as a frequent occurrence in super max cells, as a practice of “both refusing and confirming the logic … that structures cellular embodiment” (Guenther 2013, 184). What these examples indicate is that incarceration, at least as it is enacted in the U.S., is an institution structured to shutdown the epistemic agency of its subjects and does so such that this state and the state get taken on bodily. The way the prison systems deprive people who are incarcerated of critical agency affects the development of key epistemic virtues that are necessary for self-advocating. Most people experience how challenging this can be living on the outside even if you have resources, including family, the internet, or multiple care providers to help make

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decisions. As the testimony we will bring to bear below will show, being ill in prison when you have been molded to be epistemically ineffective, thwarted in your decision making power, unable to ask for what you need, unable to show your vulnerability, and be at the mercy of a system for which you are not a patient but a prisoner, is emotionally and epistemically shattering. The embodied epistemic state of being institutionalized and the more general experience of epistemic injustice is worrisome for anyone in prison and anyone who is ill in prison, but it is especially concerning for elderly people who are incarcerated, because they are likely to have served long sentences, thus increasing the degree to which they are institutionalized. This is further compounded by race and gender with Black men receiving 19.1% longer sentences than their white counter parts for the same crime and for similar prior history of violence as part of the sentencing justification (United States Sentencing Commission 2017). Furthermore, Black men are 21.2% less likely to receive a reduction in their sentencing than white men, and when they did receive a reduction, they still served 16.8% more time than white men (United States Sentencing Commission 2017). Women of all races are incarcerated for less time than white men and white and Black women receive roughly the same sentence length (United States Sentencing Commission 2017). Thus, because of the disproportionate mass incarceration of Black men through surveillance, arrests, and prosecution procedures, and sentencing length9, elderly Black men have served longer sentences than their white counterparts. Elderly inmates are more likely to experience the epistemic effects of being institutionalized because of the amount of time they have served and thus less likely to be in a position to advocate for their own care. Furthermore, they are more likely to have chronic illnesses and physical limitations than their younger counterparts. Thus, we have an aging, ill, racialized prison population that is vulnerable in the prison medical system.

 Sentence length is also affected by time added to sentences while in prison. Black men who are incarcerated are more likely to have time added from disciplinary infraction because they are more likely to be given disciplinary tickets for the same behavior than their white counterparts. They are also more likely to receive solitary confinement and longer time in solitary confinement than their white counterparts. See, for example, “The scourge of racial bias in New  York State’s prisons,” (Schwirtz et al. 2016). Although women are sentenced to less time than men, they are more likely (two to three times more likely) to get tickets for nonviolent infractions than men are, for such “infractions” as “reckless eyeballing” and “disrespect.” Furthermore, some women are more likely to receive tickets for minor infractions than others: “women with mental illness, those who are lesbian, bisexual or transgender, African-American women” (Shapiro et al. 2018). In “Epistemic deadspace: Prisons-politics-place,” (2021) Nancy McHugh engages the effects of disciplinary bias on epistemic agency. 9

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13.2.5  Punishment on Top of Punishment End of life issues are especially fraught for people who are incarcerated because they have little to no autonomy in where they die, with whom they die, or whether and how they die. Ronald Aday, researcher on aging and incarceration, states: “In an institution such as a prison, which controls living as well as dying, a sense of helplessness is almost unavoidable” (Aday 2006, 201). When people are moved from their standard housing unit to the medical unit, they lose contact with their bunkmates, lose access to programming and activities, and live in a much more restrictive and highly monitored situation that allows for less contact from the outside. For someone who has a temporary health crisis, though this move may be disconcerting, it does not result in longer or permanent isolation and higher level of carceral supervision as it does for those facing the end of their life. The very permanency of this move can be physically, socially, and emotionally devastating to a person who is incarcerated. Aday reports that the stigma of dying while incarcerated is that it is the “ultimate defeat, the ultimate punishment” (Aday 2006, 208) for people who are incarcerated. Many people who are incarcerated see death in prison as an extension, an unjust extension, of their punishment. In their interviews with elderly male inmates about end of life issues Handtke et al. (2017) support this view. For example, Martin (57 years) stated: ‘You know, whatever crap someone has done, after a certain amount of time humanity has to accept that he has been punished enough’. … Claude (67years) described not releasing a prisoner at the end of life amount[ing] to a death penalty: These guys who will finish their days in prison with a terminal illness, I find that worse than a death sentence. (. . .) It is a death penalty, indirectly. (. . .) He will die in prison so he is sentenced [to death]. He is sentenced twice, it’s a double sentence. He is sentenced, and then he is sentenced again by the illness. (Handtke et al. 2017, 7)

Furthermore, in Aday’s study of men who are incarcerated, he reports that men who die in prison worry that it will be a “disgrace to their family” (Aday 2006, 209). Thus, Aday states that men who are incarcerated feel ashamed for “dying as a prisoner, and regret at dying without atonement or forgiveness” (Aday 2006, 209). To avoid thinking about the stigma of dying in prison, this ultimate punishment on top of years of carceral punishment, Aday reports that one-third of elderly male inmates state that they shutdown any thoughts of death. An elderly inmate echoes this common theme in this statement: “When I think about death, I just have to turn it off… The last thing I want to think about in here is death” (Aday 2006, 209). Deaton and Aday’s 2010 research on elderly women who are incarcerated show that when they become preoccupied with death, they are more likely to experience death anxiety than men who are incarcerated, with 67% of the women surveyed stating they frequently thought about death and half of them stated they were bothered by these thoughts. One woman reflected “To be so sick and so locked up, and you don’t have any way of getting help, and you look out there and you don’t see a guard anywhere for maybe 20 or 30 minutes, and you think what if I have a heart attack and I can’t get out. What if the power goes down? That really scares me”

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(Deaton and Aday 2010, 59). Another woman relayed: “The death anxiety is very high, due to the lack of medical care that we get. The majority of the time, [inmates die] because they did not have the medicine that they needed, but more often, because they were left in a critical condition and couldn’t get anyone to respond” (Deaton and Aday 2010, 60). Like elderly men who are incarcerated, elderly women in this study also were concerned about the negative stigma of dying in prison. One woman stated “… I’m a sister, grandmother, mother, and I feel like after 10 years it’s going to be a waste to die here” (Deaton and Aday 2010, 62). Another woman felt, “It’s more of an embarrassment for my family, not me since I would be dead,” and another shared a similar sentiment, “I have thought about dying in here, how terrible it would be for my children and family” (Deaton and Aday 2010, 63). The vast majority of women, 83.1%, in this study stated that they have no actual fear of death; it is the process of dying in prison that they fear. Like some of the men in Aday’s other study, the women in this study used avoidance or denial to shutdown their anxiety over dying in prison. One woman stated: “It’s hard to deal with the thought of dying in prison. I can’t deal with the thought,” and so “I don’t think about dying in prison” (Deaton and Aday 2010, 63). Though this is a understandable approach to take, it is representative of institutional epistemic injustice as a form of structural violence, where the very structure and functioning of the institution, the fear of punishment and humiliation on top of punishment, puts people who are incarcerated in a position where their best epistemic option for emotional survival is a refusal to recognize or plan for death in prison. This tactic, though in many ways harmful, has an increasing logic to it when one understands what it is like to be cared for in a prison medical ward.

13.2.6  H  ealth Harm and The Institutionalization of Prison Health Care Workers10 The insidious nature of institutional epistemic injustice, the value we place on people who are incarcerated, and the ways these function together are well reflected in the prison medical ward. Prison medical wards are low budget, low tech, low comfort, and poorly staffed spaces. Nurses and doctors are paid well below those working on the outside, thus contributing to prison health care as not a desirable choice

 Although the focus in this chapter is on elderly people who are incarcerated, many people who are incarcerated experience health harm. See Andrea J. Pitts’s “Examining carceral medicine through critical phenomenology” (2018) and  Nancy McHugh “Epistemic deadspace: Prisons-politics-­ place” (2021) for examples of carceral health harm in relationship to gynecological care. Pitts provides a phenomenological account of the experiences of Jennifer Poteet at the hands of her doctor who dismisses her childhood sexual trauma as irrelevant and an “inconvenience” for caring for her gynecological needs (Pitts 2018, 27, quoting Poteet). McHugh examines the role of epistemic violence in Dr. James Heinrich’s forced sterilization of 144 women in California’s women’s prisons.

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for well-qualified health care workers. Nurses in prison frequently have less education than nurses practicing in a more traditional setting, such as a hospital (Maeve and Vaughn 2001, 49). Most prison nurses are licensed practical nurses, LPNs, with one year of training (Maeve and Vaughn 2001, 49). Doctors who practice in prisons are frequently those who have licensure issues on the outside, but are readily employed by prisons, which don’t have the same licensure standards (Maeve and Vaughn 2001, 49). For example, in Louisiana 60% of the physicians working in the state prison system have disciplinary records that affect their licensure and ability to practice medicine on the outside (Chang 2012). As Dr. Sidney Wolfe, a physician and director of health research at the consumer advocacy group Public Citizen states, “Aside from being unethical, it is dangerous…. You’re winding up having people who don't have any choice being where they are, getting taken care of by people with demonstrable previous records and problems with the way they practice medicine” (Chang 2012). Furthermore, though medical practitioners on the outside frequently have too many patients for whom they are responsible and too little resources, the situation in prisons is much worse. A prison nurse, who may have minimal training, can have up to 500 patients to whom they are responsible for providing care and administering medicine. Furthermore, these nurses and doctors have less diagnostic equipment available to them to make their assessments of patient health (Maeve and Vaughn 2001, 49). Thus, at its outset, prison health care is significantly compromised. However, this is only the tip of the iceberg and points to a larger, more entrenched problem that affects the health of people who are incarcerated. Just as people who are incarcerated can become “institutionalized” so can the health care workers that treat them.11 Unlike most people who work in the prison system, nurses and doctors are not trained to work in a prison or with people who are incarcerated. One might assume this is a good thing because they are not coming into the system acculturated in its habits. Yet, because there are few health workers in prisons, but many correctional officers, nurses and doctors receive on-the-job prison training and socialization from correctional officers (COs). The vast majority of correctional workers in the U.S. are male and white, 68.3% are white and 72.1% are male (DataUSA). Furthermore, the 2016 New York Times report, “The scourge of racial bias in New York State’s prisons” found that “in rural areas where the population is almost entirely white and nearly every officer is too. The guards who work these cellblocks rarely get to know a black person who is not behind bars” (Schwirtz et al. 2016, 1). The report finds that Black inmates are disciplined at a significantly higher rate than white inmates, and with harsher, longer forms of punishment. In contrast,

 This is not to say that all prison health care providers are under qualified or undertrained nor do we want to say that none of them care about their patients in a carceral setting. As the website, correctionalnurse.net indicates, there are carceral health care workers who do care about their patients who are incarcerated. Our argument is that the carceral system functions on a harm mentality that works to shutdown the caring mission of nursing and other health care providers in a carceral setting, and that a substantial amount of intentionality would be required to resist the harm mentality of incarceration.

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in correctional facilities close to New York City, such as Sing Sing, that are staffed primarily by Black correctional workers, the report found in a survey of 1286 violations that there are “no disciplinary disparities between” white and Black people who are incarcerated” (Schwirtz et al. 2016, 4). Just as the majority of correctional officers are white, so are the majority of prison health care workers. Michael Ajayi, a regional nurse manager, prison administrator, and a faculty member at University of Medicine and Dentistry of New Jersey, states in Minority nurse that when studying prison health care systems that “[y]ou see more minority inmates,…but almost all the nurses working with them are Caucasian” (Correctional Facility Nursing 2016, 8). The vast majority of correctional nurses are female. In a survey of northeastern correctional facilities 75% of nurses were female (El Ghaziri et al. 2019, 569). Given Mills’s arguments regarding the dysfunctional cognitive structures embedded in the epistemic state of signatories to the racial contract, the lack of exposure many white COs have to Blacks outside of their work in prisons, we should expect the “knowledge” and practices of the racial contract to be held by many COs and transmitted in the acculturation of prison health care workers. Furthermore, given the ways that race and gender operate intersectionally, with white women benefiting from the power of white men, even when they are also experiencing gender subordination, it is not surprising that many white, female nursing staff would adopt the epistemic state of COs. We should further expect that correctional officers transfer their broader sense of who an incarcerated person is and how they should be treated to prison health care workers. Moreover, like most people on the outside, health care workers come into the prison setting with a sense of what they believe those in the carceral system deserve, which tends to be punishment and a lack of entitlement to good care. Carceral facilities and the punishment meted out in them, physical and emotional, are treated as natural, inevitable parts of society, with many people challenged to even conceive of a society without incarceration.12 Thus, the idea of care is constructed as antithetical to the harm mentality of prison.13 M. Katherine Maeve and Michael Vaughn in their article “Nursing with prisoners: The practice of caring, forensic nursing or penal harm nursing” (2001) describe this as penal harm medicine and nursing. Penal harm is the view that the role of prisons is to inflict punishment through causing people who are incarcerated to feel emotional and physical pain and suffering. Maeve and Vaughn state, “[P]enal harm medicine and nursing exist when any health care provider supports and enforces penal harm through nursing and/or medical actions” (Maeve and Vaughn 2001, 58). They argue that this type of medical care has become so routine in the prison system that it passes as a normalized standard of care:

 See, for example, the arguments that Angela Davis makes in Are prisons obsolete? (2003) which challenges her readers to denaturalize the prison system and recognize it as a chosen product of capitalist and patriarchal norms, not an inevitability. 13  This raises the important question of whether prisons as institutions of punishment and harm can ever be sites of care. Thus, essentially pitting the care duties of health care providers directly against the harm goals of incarceration. 12

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upon employment in correctional facilities, nurses are taught not to hold conversations with prisoners, that ‘empathy [with prisoners] will be your downfall,’ and not to develop any kind of relationship with an inmate, even right down to [having] a cup of coffee. Training films warn new employees that inmate politeness should always be viewed as a form of manipulation, implying that inmates are less than human in their ability to be naturally polite. In very real ways, during orientation processes at jails and prisons, nurses are substantively ordered not to care. (Maeve and Vaughn 2001, 59)

As Maeve and Vaughn point out, while it is important for any health care worker to keep appropriate boundaries between themselves and their patients, it is unethical “to conflate nursing and custodial roles so that the punishment interests of the institution overwhelm the healing and caring mission of nursing” (Maeve and Vaughn 2001, 59). Other theorists’ work supports Maeve and Vaughn’s findings (Pitts 2018; Pont el al. 2012). Pitts, through the development of Franz Fanon’s work, argues that when oppressive systems structure health care, the possibilities for trust and care are “undermined by conditions of structural violence” (Pitts 2018, 24). Thus, the caring mission that health care workers should be following is instead fundamentally compromised by the oppressive structures of the penal system. Ponts et al. argue that because prison health care workers are usually under the supervision and command of prison officials, they are constantly pulled between the tension of the loyalty to their patients and their loyalty to the prison and prison officials who supervise them (2012). Because of prison hierarchies, the prison official usually wins this loyalty tug-or-war; thus compromising the care of patients and furthering the harm mission of the institution. Taking on the harm mission of the penal system is a type of institutional epistemic injustice that becomes embodied in two ways. First, the behavior, practices and ethics of health care workers become misaligned because they identify with the prison system, not the care system. They thus come to embody a correctional role, not a health care role. Second, people who are ill and incarcerated take on the institutional epistemic injustice of penal harm health care bodily. Consequently, people who are incarcerated frequently experience what we would describe as “health harm” instead of health care. As a result, one can see why an elderly inmate would fear the process of dying in prison, why they can’t contemplate death, and why death in prison is a defeat and humiliation. There is substantial evidence in case law that health harm results in negative health outcomes for patients who are incarcerated. Furthermore, Maeve and Vaughn’s findings present several examples of patients who were told they were faking symptoms to get attention only to die while in the infirmary, or patients in jails who are recognized to have significant medical needs, but who are intentionally released quickly so that the jail doesn’t have to pay for their care. One brief example they highlight that shows some of the conflicts and outcomes of this model is the case Geiger v. Bowersox. In this case, a person incarcerated in a Missouri prison asked a prison nurse for a prescription for Maalox. The nurse, after prescribing the Maalox, asked a correctional officer to deliver the Maalox to the patient. After receiving and taking the medication, the patient began vomiting and throwing up

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blood. The correctional officer had substituted floor wax for Maalox. Although the nurse did not administer the floor wax, they acted illegally and unethically in their responsibilities to the patient. Furthermore, in their relationship with the correctional officer, the nurse failed to recognize the harm mentality that this officer was embodying (Maeve and Vaughn 2001, 14). Such examples of malpractice, assault, and human rights violations in the Geiger v. Bowersox case, exist in spite of 1976 Supreme Court decision in Estelle v. Gamble, which mandates that prisons cannot act with deliberate indifference to inmates’ medical needs and must provide them with care. People who are incarcerated and ill are not only vulnerable because of their own state of being institutionalized. Many of the people who are responsible for caring for them are also institutionalized, epistemically and ethically shutdown in terms of how and why they should provide care for these patients. Consequently, health care workers have the potential to compromise the care of their patients. Many of us recognize that prison is a broken system. It is also system that breaks people to whom it has a custodial responsibility to care for.

13.3  Epistemic Practices for Resisting Health Harm Given the potential for their institutionalization through taking on the penal harm mentality and misalignment in their relationships with their patients, there is a real tension in the role of the prison health care worker. Yet, at the same time, prison health care workers are one of few people positioned to address the health needs of patients, shifting the dynamic from health harm to health care. This is compounded further by the fact that many prison health care workers have limited training, are poorly paid, and work at the whim of a broken system.14 While we don’t want to dismiss these mitigating factors, these are also true of the bulk of the people who work within the prison system. Like many dysfunctional systems, prison systems function by employing people at the lower levels of the institution, such as prison nurses and correctional officers, whose lives on the outside are economically only moderately less oppressed than those lived by incarcerated people prior to their incarceration. Yet, given the structure of the system, they hold substantial power in relationship to people who are incarcerated. The outside oppression of prison workers, at the same time they are overly empowered in relationship to people who are incarcerated, enables the continual dysfunction of the system because prison becomes a place in which to exercise power.

 Although there is a fair amount of evidence that prison health care work is compromised, it is also important to note that there are many excellent and dedicated prison health care workers who intentionally devote their careers and training to this type of work. These workers are the ones that are likely the best positioned to engage in the sort of strategies that we discuss in this section and we don’t want to dismiss their value or work.

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Prison health care workers occupy a unique position and have a unique opportunity to care for a community of people who are usually considered to be unworthy of care. Because of this positionality, they need training and strategies to move the system away from penal health harm and toward health care. Given this great need, we propose strategies for medical personnel to resist, challenge, and reshape the health harm practice and mentality of prison while recognizing the challenges they face in exercising these strategies. The practices we recommend are epistemic in nature and stem from the duties and responsibilities that are endemic to the role of medical workers serving people who are marginalized and vulnerable in multiple ways. The practices that we propose, epistemic deferral and epistemic advocacy, develop out of insights from the epistemic injustice literature. We discuss how prison health care workers can use these practices to benefit the health of their patients by derailing epistemic injustice and mitigating the very real risk they place themselves in by working for the health of their patients and against epistemic injustice.

13.3.1  Epistemic Deferral and Epistemic Advocacy Epistemic deferral and epistemic advocacy are akin to what Medina and Whitt describe as epistemic activism, which are “transgressive forms of epistemic interaction that call attention to, and potentially disrupt contexts, intercontextual relations, and patterns of interaction that contribute to epistemic injustice” (Medina and Whitt 2021). Epistemic activism creates conditions such that epistemically advantaged individuals and groups are able to use their positionality to create the space for marginalized groups to have their voices heard and understood. However, given the roles and responsibilities of prison health care workers epistemic deferral and epistemic advocacy are not necessarily forms of activism, but rather they are epistemic responsibilities mandated by the roles and responsibilities of prison health care workers to provide care for their patients, i.e., recognize and treat individuals in their care as patients and not prisoners. Taking on these epistemic responsibilities provides a starting point for on-the-ground engagement that allows for changing and challenging the health harm mentality and practice endemic to many prison health care wards. Epistemic deferral exists in situations of epistemic asymmetry, such as between a health care worker and a patient. The person in the dominant position is situated to act either through epistemic virtues such as curiosity, diligence, and open-­ mindedness (Medina 2013) or to operate with epistemic vice and participate in the continual marginalization of the non-dominant individual. Epistemic deferral starts from exercising epistemic virtues and consists of an active engagement with the non-dominant individual through the recognizing and valuing of that person as having epistemic credibility. When an individual participates in epistemic deferral they not only believe the testimony of another, as with standpoint epistemology, they start the engagement and activity from the knowledge and position of the

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marginalized individual. This, in turn, develops and sustains an epistemic and practical space for that testimony to be heard. This practice, in many ways, is the opposite of epistemic gaslighting, which calls into question a marginalized subject’s testimony (McKinnon 2017). Epistemic advocacy starts and enables a practice of trust in one’s credibility and testimony. Thus, when the non-marginalized person defers to the epistemically marginalized person’s knowledge of self and institutional and social systems, they recognize, as Kristie Dotson articulates, their role as epistemic informants (Dotson 2008). Epistemic deferral is particularly important in prison health care for several reasons. First, people who are incarcerated are already considered to be epistemically suspicious, i.e., untrustworthy epistemic agents, and are not trusted to report on their own health (McHugh 2021). For example, inmates are often seen as drug seeking when they go to the prison medical ward for treatment, even when they have no history of drug use inside or outside of prison. In some cases, this can have extreme consequences such as individuals eventually suffering life-threatening illness and needing critical care because of lack of treatment. Second, deferral is a necessary step in mitigating institutionalization in that it gives agency to a marginalized individual as they move from making choices based on substitute agency to making choices based on their health with more substantial agency. It is important to note that some individuals belonging to the elderly prison population may have greater levels of institutionalization and thus, the reversal of this institutionalization may present significant challenges. However, that does not negate the epistemic duties and responsibilities that prison health care workers are bound to. Third, epistemic gaslighting and other forms of epistemic vice perpetuate institutionalization by reinforcing the mechanisms and hierarchy of credibility in prisons. If a health care worker does not engage in epistemic deferral, their actions continue the institutionalization of the person in their care. Once epistemic deferral has been practiced, this opens up the possibility for what we are calling epistemic advocacy. Epistemic advocacy is a form of epistemic engagement with a marginalized individual or group when there is little to no hope of an asymmetrical power relationship moving toward symmetry, such as the relationship between a person who is currently incarcerated and a prison health care worker. It initiates with epistemic deferral and moves to a type of partnership based on the specific wants and needs articulated by the marginalized individual or group. It is an active, ongoing partnership that intentionally and strategically relies upon the ability of the well-positioned member to work for the benefit of the marginalized member or group by sharing the knowledge or needs for the benefit of the epistemically marginalized individual or group, or by making sure the needs of the marginalized individual are met. It relies upon trust, reciprocity, and a high impetus toward ethical practice, outcomes, and justice. Given the special role that health care workers play in their responsibilities to care and advocate for patients, in many ways, epistemic advocacy is endemic to their role. We tend not to think of this on the outside. However, this would be an appropriate way to think of health care that seeks to benefit any marginalized group. Good medical care requires exercising epistemic deferral to understand a patient’s

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needs and wants. Working in partnership with patients through the asymmetrical health care provider and patient relationship in ways that are targeted, ethical, and just is foundational. However, as we argued above, prison disrupts the relationship of the health care provider and patient through its primary engagement of the patient as a prisoner. Thus, to ensure that health care occurs in carceral settings, instead of health harm, requires a level of politicization that wouldn’t necessarily be present on the outside. Thus, epistemic advocacy has a special significance in prison health care that it might not in some other settings.

13.3.2  Overt and Covert Epistemic Operations The goals of epistemic advocacy can be numerous, but in practice, it can serve a range of roles depending upon strategic needs. For example, it can amplify the needs and wants of the individual and group, as Medina and Whitt articulate, by making public these needs and wants. This is especially critical in a situation such as prison where it is literally built to prevent observation and intervention from the outside. It can also shift the attention of the dominant group toward something else in order to act within limitations present, but in ways that are to the benefit of the marginalized individual or group. We refer to this as epistemic diversion. A prison health care worker, who has positioned themselves as an epistemic advocate, would utilize the strategic tactic of epistemic amplification when an obvious and undeniable health injustice is occurring in a prison. For instance, in many prisons people who have a mental illness are routinely overmedicated and wrongly medicated to keep them calm and manageable.15 This is a common and vocal complaint that is reported by people who are medicated and by inmates who know of this practice. A prison health care worker invested in just health outcomes in prison would need to engage in epistemic advocacy. They would start by engaging in epistemic deferral by taking the complaints of negligence and abuse seriously and working to understand how it affects a person living a life in prison. It would be their duty to engage in epistemic amplification by making the injustice known to others and to demand change, even if getting this change means going outside of the prison hierarchy. However, due to the limitations of some situations, amplification via the health care provider is not an effective approach. This could be in part because it could draw attention to the way that a prison health care worker is working to benefit the health of a patient that is consistent with the goals of health care, but perhaps inconsistent with the penal harm mentality or the mechanisms that financially shape incarceration. Amplification could allow for potential risk to both the patient who the health care worker is aiming to help and for the health care workers themselves through endangering their current and future employment. Medina and Whitt 15  See Anthony Ryan Hatch (2019) Silent cells: The secret drugging of captive America for a detailed description of the over medicating of people who are incarcerated, making them prisoners that are more docile.

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h­ ighlight options that could bridge this gap through health care providers in prison working through people on the outside to amplify the voices and experiences of people who are incarcerated. These strategic uses of amplification allow for the relationship between the prison health care worker and the patient to be strengthened, as the patient knows that the health care worker will provide adequate care, and allows the patient to gain agency over their own health care. Working outside of the system may not be an option for all health care workers and shouldn’t be the only option. Frequently, strategies are needed for inside and outside of the system to create change. A prison health care worker who wants to aid their patient through their using their medical knowledge and their knowledge of the prison system might engage in something like the following example: Prison health care workers are frequently limited to treating one medical condition at a time and certain types of conditions are higher priorities for prisons than other. However, certain conditions are often comorbid, such as depression and insomnia. A prison health care worker who is engaged in being an epistemic advocate could utilize epistemic diversion to put the documented focus on treating a patient’s depression while also using their medical knowledge to prescribe a medication that treats depression and is an “off-label” treatment for insomnia, which tends to be less of priority in the institutional management of people who are incarcerated. This would benefit the patient by allowing for the treatment of a comorbid illness, but it would also protect a health care worker from overtly calling out the system. This allows for the protection of prison health care workers who don’t have enough agency themselves to directly speak out against the injustices that occur within the penal system, as speaking out could lead to reprimands, demotions, loss of job, and potential prevention from getting a job within the medical field again. Covert epistemic operations, such as this example, allow for prison health care workers to do real work now for those that are incarcerated instead of leaving those who are affected to suffer while people on the outside lobby for a solution that is much further in the future.

13.3.3  Mingling of tactics Prison health care workers at times can utilize both tactics of epistemic amplification and epistemic advocacy in a synchronous manner to get the best outcome for their patient. For instance, when looking at a chronically ill patient who may be eligible for compassionate release, the health care worker may recognize that prisons rarely grant compassionate release. For example, in the Federal Bureau of Prisons, in one year, only 3.24% of those petitioning for compassionate release received it (Mitchell and Williams 2017, 855). Mitchell and Williams argue that at the state level this number is even lower (Mitchell and Williams 2017, 855). When a patient is requesting compassionate release, a prison health care worker who understands how challenging obtaining compassionate release can be could

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exercise epistemic advocacy inside and outside of the institution working for the patient to achieve their wants and needs, by advocating for their health care and supporting their end of life choices. On the outside, health care providers can advocate for and amplify the individual patient’s request for compassionate release in a number of ways. As Mitchell and Williams also argue, this is part of prison health care workers’ ethical obligations, as well as compassionate release in general. Mitchell and Williams provide four strategies that prison health care workers can engage in to advocate for and amplify the needs of their patient and other patients in need of compassionate release. First, prison health care workers can use their professional opinion and stature to promote the patient’s petition for compassionate release and community care. Second, prison health care workers can review successful compassionate release petitions to “optimize the success of future petitions, focusing on administrative hurdles that impede access to timely assessment and release” (Mitchell and Williams 2017, 858). Third, they can develop valuable relationships outside of prison with those who have access to community medical housing and social networks that are essential for successful petitions in most states. Finally, and importantly for the long term change that can come from epistemic advocacy and epistemic amplification, prison health care workers can share the stories of patients in need of compassionate release and health care workers “can share their stories with policymakers and the public, illuminating their patients’ needs” to make clear how important they view compassionate release to be for terminally ill patients who are incarcerated (Mitchell and Williams 2017, 858).

13.4  Conclusion We have discussed a range of strategies that can benefit the lives of people who are ill, aging, and dying in prison. These strategies arise from the epistemic insights generated by nonideal theory. There are very few things that are less “ideal” than our current prison system, the way we incarcerate people, and how we care for ill and aging people who are incarcerated. Work in nonideal theory, in particular epistemology of ignorance and epistemic injustice, has a distinct advantage in its ability to create avenues for people who are invested in social justice to develop strategies that can move specific practices and institutions toward more just outcomes. Work needs to be done outside of prison to eradicate structural violence, which shapes health outcomes, and work needs be done to end mass incarceration. At the same time, substantial changes are needed in prisons to reshape prison health harm. Moving toward health care is a critical intervention to help create this change and a strategic use of nonideal theory. Acknowledgments  Thank you to James Mathews, José Medina, Andrea J. Pitts, and Gaile Pohlhaus for their critique and insight on drafts of this paper.

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Chapter 14

A Nonideal Approach to Truthfulness in Carceral Medicine Andrea J. Pitts

In 2018, Charles Mills, then-president of the Central Division of the American Philosophical Association, delivered a lecture on the “particular urgency” of bringing philosophical “talents and expertise” to the study of race (Mills 2018, 44). Citing the use of the Nazi chant “Blood and soil!” by members of a Unite the Right demonstration in Charlottesville, Virginia, Mills urged his audience to see the relevance of critically interrogating the functions, foundations, and maintenance of structural racism. Throughout his talk, he revisited a theme that can be traced in various places in his writings on critical philosophy of race and political philosophy, namely, the manner in which ideal theory serves as a support for white supremacy. Aligning himself with contemporary work on epistemic injustice, he pointed to the manner in which ideal theory becomes a “deeply problematic methodology … in a world where social injustice and related epistemic injustice are not the deviations from the norm, not the outliers, but constitute the norm (Mills 2018, 44). He argued to an audience of one of the largest and oldest philosophical organizations in the United States, that ideal theory itself is a form of epistemic injustice (Mills 2018, 45). To defend this claim, he charted varying fictional and nonfictional examples of utopian and dystopian writings and their accompanying social imaginaries. Such imaginaries, he noted, shape temporal relations to the past, present, and future, and ontological relations regarding what is, what is not, and what might become of our human social predicaments. He then concluded by arguing that ideal theory—in that case, that of John Rawls and Rawlsians—supports what he describes as a whitetopia. That is, he argued that ideal theory is a utopic vision in which “white domination is generally denied, and differential white privilege is masked … through a vocabulary, an iconography, and a normative apparatus that erases the past and present subordination of people of color” (Mills 2018, 51). Mills’s work on these issues, A. J. Pitts (*) Department of Philosophy, University of North Carolina, Charlotte, Charlotte, NC, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 E. Victor, L. K. Guidry-Grimes (eds.), Applying Nonideal Theory to Bioethics, Philosophy and Medicine 139, https://doi.org/10.1007/978-3-030-72503-7_14

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then, creates an important opening through which to raise questions regarding methodology, futurity, and normativity with respect to nonideal theory, i.e. when nonideal theory is understood as a corrective to whitetopic imaginings. This present collection of essays may be considered a response to Mills’s call for nonideal theorizing, which in the context of this volume, is being examined in the field of bioethics. Mills’s address also delves into a theme that is of further relevance to a collective endeavor on nonideal theorizing in bioethics. Specifically, Mills offers a rich subtext about nonideal theory and genre. Notably, the beginning of his address includes a lengthy analysis of utopianism and dystopianism in various fictional literary works. Among the examples he provides are novels and short stories by authors such as Edward Bellamy, Martin Delany, W.E.B. Du Bois, Ralph Ellison, Charlotte Perkins Gilman, Pauline Hopkins, Ursula K.  Le Guin, Jack London, George Schuyler, and Alison Sheldon. For each fictional text mentioned, Mills spells out the material conditions of racism, sexism, and capitalism that provide the contrasts for speculative, often utopian, worlds without violence, exploitation, and oppression. The overarching commonality here is that “little extrapolation” is needed to demonstrate a utopian vision (2018, 49). Rather, he writes: That liberation, were it achievable, would be utopia enough. The epistemology of both kinds of work, political tract and novel, is thus fundamentally oriented by the imperative of revealing the dystopic conditions under which the oppressed have to live (Mills 2018).

The commentary on genre here is that differing forms of writing, including science fiction, provide epistemological correctives to misconceptions, distortions, and erasures of whitetopian ideal theorizing. Similarly, a number of Mills’s other works such as “White ignorance” (2007) and Blackness visible (1998) contain discussions regarding the epistemological functions of literary works of fiction. For example, Mills describes Ralph Ellison’s Invisible man as an “epistemological novel” in that the novel’s Black protagonist strives to understand which beliefs should be considered correct in a largely distorted world in which white misperceptions abound (Mills 2005, 18). In this vein, Mills’s analyses of white ignorance, ideal theory, and liberalism often contain subtle markers that literary works of fiction by people of color, white women, and other marginalized persons have been providing correctives to the patterns of misinformation, indifference, and denial that have been historically perpetuated under white supremacy, heteropatriarchy, and capitalism. For this reason, he argues in his 2018 address that: For any ideal of social justice to be truly comprehensive, it will have to pay attention to the alternative voices and perspectives of the historically excluded, recognizing how differently their own positioning has historically framed the relation of the utopic and dystopic, and what should appropriately be seen as “ideal” (Mills 2018).

Thus, implicit within Mills’s critique is a methodological suggestion to consider fiction, political treaties, and any number of other genres of writing and art to destabilize hegemonic perspectives that bolster ideal theory. This chapter, then, draws from this methodological suggestion within Mills’s critique of ideal theory, and utilizes another literary genre that may serve as a

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corrective to the persistence of whitetopias within bioethics, namely, autobiography. While work has been done in literary theory to analyze and critique the functions of authorial voicings in autobiography as a genre, first-person testimony continues to serve as an undeniable form of resistance against efforts to contain, control, or cover over the patterned injustices that members of historically oppressed groups confront. Consider, for example, Margo V.  Perkins’s book dedicated to understanding, in her words, [t]he different ways [activists of the Black Power movement] use autobiography to connect their own circumstances with those of other activists across historical periods, their emphatic linking of the person and the political in agitating for transformative action, and their constructing an alternative history that challenges hegemonic ways of knowing (Perkins 2000, xii).

Perkins’s book examines three women autobiographers of the Black Power movement—Assata Shakur, Elaine Brown, and Angela Davis—and the contours of political autobiography as a distinct genre of writing. She outlines six shared features of activists who participate in creating political autobiographies: 1. the autobiographer will emphasize the story of the struggle over her own personal ordeals; 2. she will use her own story both to document a history of the struggle and to further its political agenda; 3. she will provide a voice for the voiceless; 4. she will honor strategic silence in order to protect the integrity of the struggle as well as the welfare of other activists; 5. she will expose oppressive conditions and the repressive tactics of the state; 6. she will use the autobiography as a form of political intervention, to educate as broad an audience as possible to the situation and issues at stake (Perkins 2000, 7). Perkins’s listed features here highlight the largely collective functions of political autobiography, which thereby serve as correctives to the mass distortions and coordinated patterns of misinformation and doubt perpetuated through the whitetopic visions that Mills describes. In bioethics, in particular, the political autobiography of Assata Shakur provides a compelling set of narratives regarding the correctional health care conditions of the 1970s. Shakur, a member of the Black Liberation Army who was imprisoned from 1973 to 1979 under charges for first-degree murder of a police officer, writes directly about her experiences with health care professionals during her arrest and confinement, as well as her experiences of pregnancy and childbirth while in state custody. Given the features of political autobiographies that Perkins provides, Shakur’s analysis serves as more than the documentation of one person’s struggles through political persecution and imprisonment in the United States. Instead, her work, as I seek to honor it here, offers an account of systemic patterns of oppression that remain operative within correctional health care industries today. With these interpretive strategies in mind, in this chapter I read Shakur’s political autobiography as a careful framing of the complicated nonideal conditions of

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carceral medicine. That is, while mainstream bioethics often highlights the necessity of truthfulness, or veracity, in the context of health care services, little work has been done that examines the patterned forms of oppression, systemic neglect, and the tightly woven relationships between health care and punitive industries that continue to impact communities of color and poor people in the United States. Mainstream discussions of bioethics often highlight the general importance of veracity within the patient-provider relationship, including providers’ obligations and constraints with respect to telling the truth to their patients, and, to a lesser extent, patients’ responsibilities and concerns regarding truthful reporting to their providers. However, a great deal of this literature largely overlooks how structural barriers to health care—including racial and sexual biases in clinical judgment, inadequate staffing, infrastructure, and accessibility in medical facilities, and institutionally specific constraints—impact the functions of veracity in the provision of health care. Through a discussion of Shakur’s autobiography, this chapter highlights structural barriers to health care in prisons, jails, and detention facilities with a focus on the institutionally specific constraints that arise through punitive aims within carceral facilities. As such, this chapter is a response to Mills’s methodological suggestion to utilize diverse genres of writing to show the very dystopic conditions in which many people continue to engage with health care and correctional industries today. To carry out this analysis, I first outline several accounts of the functions of veracity within bioethics, the majority of which make little mention of how structural oppressions, particularly racism, impact the manner in which veracity should be understood within clinical contexts. In the second section, I turn to Assata: An autobiography (1987) to examine a series of issues regarding veracity that arise in the nonideal setting of correctional medicine. I argue that forms of deprivation and disciplinary action work in tandem with structural oppressions in correctional health care contexts to radically alter the value and functions of veracity within those settings. Additionally, I support this reading of Shakur’s work through empirical research, court cases, and prison abolitionist writings that outline the status of correctional health care in the United States today. I then conclude by returning to a brief discussion of transformative justice as a model for responding to patterns of harm within correctional health care contexts.

14.1  Veracity in Bioethics A brief survey of major works within biomedical ethics shows that it is quite common to include veracity or truth-telling between patients and providers as a virtue within health care professions.1 For example, Tom L.  Beauchamp and James

1  Although this chapter focuses generally on the patient-provider relationship in the context of correctional health care, I am leaving out a great deal of literature on medical research and veracity.

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F. Childress note in Principles of biomedical ethics that while the American Medical Association’s (AMA) guidelines did not include any discussion of veracity until the 1980 revisions, veracity—when understood as specifying aspects of the guiding principles of autonomy, beneficence, non-maleficence, and justice—“is vital for a strong patient-professional relationship” (Beauchamp and Childress 2001, 283–284). Likewise, Robert M. Veatch in The basics of bioethics asserts that “the principle of veracity is an essential characteristic of human action that shows respect,” and he interprets cases involving veracity through an “obligation to tell the truth” (Veatch 76). Additionally, the American Medical Association’s Code of Medical Ethics notes that “Truthful and open communication between physician and patient is essential for trust in the relationship and for respect for autonomy” (AMA 2017, 2.1.3). Generally speaking, the AMA, Beauchamp and Childress, and Veatch all frame cases for truth-telling primarily in terms of disclosure, nondisclosure, deception, and lying. When a patient seeks medical care from a professional, for example, the patient gains a special relationship to the clinician wherein the clinician becomes obligated to provide information in a manner that otherwise would not exist between persons who are not so professionally engaged. Additionally, regarding disclosure, much literature in biomedical ethics has been dedicated to interpreting the conditions under which providers must strike a balance between beneficence and non-maleficence when disclosing medical information. That is, a clinician’s aim to protect a patient’s wellbeing may be weighed against the potential harm caused by disclosing difficult information about a dismal prognosis which may pose “a serious psychological threat of detriment to the patient” (AMA 2017, 79). In fact, it was this issue, in particular, that led the AMA in the early 1980s to attempt to clarify clinical obligations regarding veracity when delivering or withholding medical information. Generally speaking, however, trust-building and truth-telling, in the context of the patient-provider relationship in these texts appear abstracted, to use Mills’s language, from the more dystopic conditions in which many patients live. Notably, major works in bioethics such as those of Beauchamp and Childress and Veatch tend to treat the principles of justice, non-maleficence, and beneficence as disconnected from the sociopolitical conditions in which they are being examined. For example, while mentions of racial health disparities are peppered throughout their works, little careful analysis digs into the systemic, patterned forms of injustice, harm, and mistreatment that impact communities of color in the United States. Likewise, rather than analyzing the epistemic dimensions among patients and providers by viewing both sets of knowers as robustly situated within racial, gendered, cultural, and economic conditions, cases of veracity are seen as occurring between characters such as “Dr. Wordsworth” and “Jim Sullivan,” neither of which bear any relation to community dynamics that might impact their epistemological relationships, including patterns of deception or distrust that function within structurally racist

Such work, however, remains important. For analyses of medical research and incarcerated populations specifically, see Hornblum (1999), Victor (2019), and Washington (2008).

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and sexist institutions (Veatch 2016, 78). In this case, as in ideal theory, issues of veracity are abstracted from the lived conditions of patients and providers, and a general, neutral epistemic terrain is assumed when debating issues such as deception, lying, or fostering conditions for mutual trust. In a more extensive study of veracity, Jennifer Jackson raises systemic injustices as potential conditions that would impact truth-telling and trust-building in clinical biomedicine (2002). Jackson outlines literature on the ethics of lying and deception within the European canon, and discussions of truth-telling among medical writings from the Hippocratic teachings of ancient Greece to twentieth century discussions of disclosure, informed consent, the use of placebos in clinical research, and patient confidentiality. Jackson examines whether deliberate deception in biomedicine can be, at times, justifiable or morally permissible. She concludes that when making assessments about whether to disclose or withhold a given judgment, clinicians must consider the underlying background conditions in which the moral act is under consideration. She writes: [T]he general obligations we owe one another, including the duty not to lie, presuppose a background of reciprocity and state protection. Absent that background, as it may be absent in times of civil war, under a tyranny, or even, rarely, if you are suddenly confronted by a direct and violent threat, the general obligations no longer apply (Jackson 2002, 72).

Jackson raises the need for a “background of reciprocity and state protection” that is needed to support an ethical obligation to tell the truth within conditions of biomedicine. The background that she is considering, however, appears as an aberrant possibility, distanced from more general conditions under which a duty to tell the truth would be binding. As such, although Jackson raises the possibility of unjust conditions prefacing ethical dimensions of truth-telling and trust-building in biomedicine, she commits the whitetopic slip that Mills outlines in his 2018 address. Namely, Jackson assumes that background conditions of injustice are outliers to a more basic ethical norm rather than constitutive of our normative relations to one another. In this sense, although her work covers a wide array of cases and ethicists, she falls into what Mills describes elsewhere as an “idealized social ontology” (Mills 2005, 168). That is, the view she defends “abstract[s] away from relations of structural domination, exploitation, coercion, and oppression,” and assumes an otherwise just terrain from which to make moral judgements (Mills 2005, 168). In Jackson’s work, then, background conditions of reciprocity and state protection are assumed to function in most, or at least, in many cases, which is at odds with interpretations of structural racism, for instance, as the systematic denial of these moral and political goods to people of color. Some bioethicists, historians, and sociologists, however, have delved into the racial, gendered, cultural, and economic dimensions of how trust is fostered or prevented between patients and providers in clinical contexts. Much of this work, examines the profoundly unjust conditions under which patients and providers are expected to build trust with one another. In much of this literature, the “avoidance and evasion” of issues of race, gender, class, sexuality, and so on are brought into critical light, and examined in terms of the manner in which these forms of neglect,

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denial, and doubt, in effect, perpetuate oppressions. Annette Dula writes that three public assertions have had such an effect. Combined, these three beliefs end up supporting an idealized, or to use Mills’s language again, a whitetopic image of health care in the United States. The three idealizing assertions are: 1 . That physician bias and racial stereotypes do not exist, 2. That methodology in disparities research is seriously flawed and therefore useless, and 3. That African Americans need to take responsibility for their poor health (Dula 2007, 57). “Together,” Dula states, “these three assertions weaken the struggle to end the disastrous condition of minority health” (Dula 2007). Such assertions, she defends, are held within broad public narratives, and are also held by a number of conservative think tanks, “corporate-friendly” politicians, tobacco companies, pharmaceutical companies, and other corporate interests who benefit from perpetuating such forms of doubt, individualist responsibility, and denial (Dula 2007, 48). Along similar lines, John Hoberman examines how perpetual neglect and manufactured doubt bear negative health outcomes for African Americans, and he connects these epistemological patterns, like Dula, to systemic structural injustices. He writes: American medicine’s disengagement from the black population is only one dimension of the much larger racial disengagement that characterizes American society as a whole. Ignoring African Americans or relegating them to marginal status has been a deeply rooted American habit (Hoberman 2012, 4).

What Dula and Hoberman share in their respective works is the general claim that the distorting lenses of systemic racism have a profound impact on all dimensions of the provision of clinical health care. In this sense, despite well-meaning, good-­ intentioned practitioners, clinicians make judgments that negatively impact their patients of color. Both authors address, in particular, the 2002 Institute of Medicine’s (IOM) report Unequal treatment: Confronting racial and ethnic disparities in health care, and the dialogue that grew around it. The report offers an important, though tentative, claim: “Bias, stereotyping, prejudice, and clinical uncertainty on the part of healthcare providers may contribute to racial and ethnic disparities in healthcare” (IOM 2002, 12). Despite the IOM’s status as a reliable nonprofit research organization and the report’s survey of over 100 peer-reviewed studies, the report drew significant criticism from some health care providers. Dula and Hoberman both cite the work of Sally Satel, an American psychiatrist who spearheaded one such critical response to the report. Of particular concern, the report included language that racial bias, stereotyping, prejudice, and clinical uncertainty may impact clinical judgement, and this language created an opportunity for critics to exploit what they read as the faltering nature of the IOM’s findings. That is, the report contained hypothetical language about the role of racially-motivated factors in clinical judgments that have a negative impact on patient health. As such, Satel and others deemed the report

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dubious and relying on shaky evidence. More directly, Satel and co-author Jonathan Klick, in a 2006 publication with the conservative think tank American Enterprise Institute called health disparities due to race a “myth,” and they claimed that the relative differences in health outcomes, morbidity rates, and mortality rates, result from factors other than race, such as socioeconomic status and geography (2006, 4). Satel also defends a more general view that public attention to racism in biomedicine is a distraction caused by “political correctness” and discourses of victimization that operate within clinical medicine (2002). As such, Satel’s work serves as a rather obvious example of how health care professionals effectively deny and dismiss the available empirical evidence that points toward systemic patterns of oppression impacting patients in clinical settings. Against this trend, Hoberman notes, the IOM and similar liberal approaches to medical racism appear to hold out hope that the availability of more empirical research will change the patterns of neglect, deprivation, under−/overtreatment, or otherwise distorted judgments that negatively impact people of color within the U.S. health care system (Hoberman 2012). Yet, he and Dula both suggest that something more than empirical research will be needed to counter the misinformation, misperceptions, and indifference within such whitetopic and whitewashing defenses, and they each offer different approaches to tackle these issues. Hoberman defends the need for historical research showing patterns of racism within biomedicine, as well as curricular reform within medical schools that support “introspective activity regarding human emotions and social realities” about racism and bias. He also proposes a new form of “cultural competency” training wherein the behavior of doctors is under direct scrutiny. Regarding this latter prescriptive, Hoberman rejects cultural competence training that views group-level ethnic and/or racial beliefs as “a set of already known factors” (Hoberman 2012, 225). Instead, Hoberman’s model for training clinicians is to interpret seemingly shared Black “traits,” such as a patterned distrust of medical providers, as responses to “a common predicament [that is the] result of slavery, racial segregation, and the history of stressors associated with being black in the United States” (Hoberman 2012, 225). “‘Cultural competence’ educators,” he writes, “should bear in mind that cultural ‘traits’ result from the collective consequences of group experiences that have accumulated over many years” (Hoberman 2012, 225), rather than inherent features of individuals or groups. Dula’s approach places a prescriptive emphasis on the economic and political incentives that corporations and policy makers have on denying the existence of racial disparities in biomedicine (Dula 2007, 61–62). In particular, Dula argues that patterns of industry deregulation and the further perpetuation of individualizing narratives of responsibility aid corporations, insurance companies, and their political beneficiaries who stand to gain from the widespread neglect of the health outcomes of communities of color in the United States. Dula’s response, then, is to put discussions of the patient-provider relationship within a broader economic and sociopolitical context in which privatized health care systems, major corporations, and policymakers profit from a reduction of resources for and oversight of the health of people of color in the United States. Analyzing health care with these factors at

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play, then, will aid in interpreting the motivations and measures necessary to reduce health disparities in the country, she argues. In the next section, I propose that we combine Dula and Hoberman’s approaches by learning more about Shakur’s examination of the systemic sociopolitical and economic conditions impacting Black incarcerated patients. Shakur’s autobiography contains important historical framings of structural harms operative within correctional health care, as well as attention to the institutional constraints of health care providers in carceral settings. Moreover, Shakur’s autobiography, as a political autobiography, offers insight into collective struggles among African Americans with the U.S. health care system, and collective experiences that impact patterns of trust and veracity in a nonideal world.

14.2  Carceral Medicine and Collective Struggle Shakur begins her autobiography by depicting her interactions with health care professionals. Assata: An autobiography opens with a detailed scene describing Shakur’s injury and arrest during a shootout with police on the New Jersey Turnpike in May of 1973, and she recounts her interactions with the staff at Middlesex General Hospital who were responsible for treating her after her arrest. From the beginning of the book and throughout, Shakur offers a series of first-hand recollections of her experiences under medical care while in state custody. Additionally, and following the nonidealized and political themes mentioned above, Shakur’s autobiography carefully discusses work among members of various liberation movements, focusing most specifically on the Black Liberation Army. The Black Liberation Army was an underground armed revolutionary movement that grew in numbers following the shift to reformist politics within the Black Panther Party, a shift that many argue stemmed from increased governmental repression and internal party divisions after 1971 (Umoja 1999, 132). However, Shakur, along with Black revolutionary Geronimo ji-Jaga, who was incarcerated from 1972 to 1997 for charges that emerged during FBI operations targeting Black radicals during the 1960s and early 70s, describes the Black Liberation Army as broader than any temporally-bound group of members. Both Shakur and ji-Jaga describe the Black Liberation Army as “a concept” (Shakur 1987, 169; Umoja 1999, 32). This concept, or idea, Shakur describes in the following manner in an opening statement in a 1975 trial for kidnapping charges for which she was eventually acquitted by the jury: The idea of the Black Liberation Army [BLA] emerged from conditions in Black communities. Conditions of poverty, indecent housing, massive unemployment, poor medical care and inferior education. The idea came about because Black People are not free or equal in this country. Because ninety percent of the men and women in this country’s prisons are Black and Third World. Because ten-year-old children are shot down in the streets. Because dope has saturated our communities, preying on the disillusionment and frustration of our children. The concept of the BLA arose because of the political, social, and economic

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Note, the explicit positions on health care, drug addiction, incarceration, poverty, and the further economic, societal, and political conditions that led to the development of the “concept” of the Black Liberation Army. Like other revolutionary movements during this period, including the American Indian Movement, the Young Lords, the Brown Berets, and the Red Guard, the Black Liberation Army publicly listed their demands for health care and medical facilities that would serve the specific needs of communities of color both in the United States and worldwide. This radical health care activism was mobilized through the development of community clinics, free ambulance services, food services, as well as, in the case of the Young Lords, through the occupation of Lincoln Hospital in New York, wherein the members demanded better labor conditions for hospital workers, a community-­ worker led board that would oversee the policies and practices of the facility, better drug treatment programs, improved access to abortion and reproductive health services, a lead-poison detection program, and an end to “health empires” that profit from the illness and death of poor people (Enck-Wanzer 2010, 190). Such demands, as Shakur highlights, stem directly from the lived conditions of the communities impacted by a dystopic lack of basic health care, food programming, and other public health initiatives. In this sense, Shakur’s autobiography outlines her involvement with radical organizations, including many of those listed above, that prefaced health activism as a necessary component of revolutionary change. Notably, Shakur writes of her eventual break from the Black Panther Party due, in part, from her frustration and feelings of demoralization after the Party put on hiatus their free health clinic, Saturday liberation school, and student organizing efforts (Shakur 1987, 230).2 Alongside this broad-based political orientation toward health care activism, Shakur’s autobiography also directs readers to the health care conditions of incarcerated peoples, in particular. This emphasis in her writings, however, should not be surprising, given that the 1970s was also the beginnings of a national prisoners’ rights movement that fought conditions of overcrowding, neglect, and abuse behind bars through the courts and demonstrations orchestrated and/or led by prisoners both inside and outside of prison walls (Chase 2015). Shakur, as well as Angela Davis, George Jackson, Lolita Lebrón, Fred Arispe Cruz, Susan Rosenberg, David Resendez Ruíz, and many other politicized prisoners participated in a series of legal and extralegal challenges to the medical, sanitary, and punitive conditions within prisons and jails. Such challenges aided in the development of a series of reforms, including the AMA’s first audits of the medical conditions within carceral facilities in the United States (Anno 1991, 12; Anno 2001). Shakur’s autobiography thus traces an important time during the history of correctional medicine: the period of roughly 1971–1979. That is, her incarceration spans a crucial period of health

 For a detailed study of the Black Panther Party’s health care activism, see Nelson (2013).

2

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care activism behind bars, as well as landmark court cases and the early stages of institutions that would continue to shape the development and status of correctional health care today. For example, the litigation of cases such as Estelle v. Gamble (1976) and Ruíz v. Estelle (1980), and the oversight committees of the AMA and the American Public Health Association that would eventually become the National Commission on Correctional Health Care all occurred during this decade. Accordingly, Shakur’s detailed accounting of health care conditions during her imprisonment traces a transformative period of U.S. carceral history. Given the extensive amount of information regarding health care conditions in the many prisons, jails, and hospitals in which Shakur was under state confinement, I have divided her remarks in the autobiography into three broad categories: 1. Comments regarding the mutual imbrication of policing and health care institutions (bureaucratic, legal, security, and surveillance); 2. Comments regarding interactions between health care providers and patients; and 3. Comments regarding pregnancy and childbirth during incarceration. Each category, I propose, bears significant implications for relations of trust-­ building and truth-telling within carceral settings, and, as such, offer nonidealized framings of the role of veracity within correctional health care.

14.2.1  C  omments Regarding the Mutual Imbrication of Policing and Health Care Institutions First, regarding the mutual imbrication of policing and health care institutions, Shakur’s descriptions throughout the book detail a number of ways in which legal, bureaucratic, financial, and security and surveillance apparatuses are related in ways that intertwine hospitals and medical professionals with punitive and policing institutions. Importantly, this entanglement between punishment and health industries, I argue, has a negative impact on the dynamics of trust and truth-telling in medicine. For example, in the first few pages of the book, Shakur raises this specific issue in a description of her hospitalization at Middlesex General Hospital just after being detained by the police. She is brought to the hospital to treat the gunshot wounds that she received during a shootout with police. Her first description of the hospital notes that the nurses are supervised by police as they are cutting off her clothing to treat her wounds. Also, during this intake process, she is swabbed for gunshot residue and taunted by a physician during a physical examination. He mockingly asks her “Why’d you shoot the trooper? Why’d you shoot the trooper?” (Shakur 1987, 4). She also states that she initially does not provide her name to the nurse who is treating her. Moreover, the first days of her hospitalization include “Nurses, doctors, and troopers,” and law enforcement agents interrogate her between moments of unconsciousness. Their interrogation, she writes, included physical and verbal abuse, and

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the police officers strike her, prod her wounds, and put stinging liquid into her eyes (Shakur 1987, 6–8). The investigation of her alleged crime thus occurs during her hospitalization, and her first interactions with medical professionals are closely monitored and interspersed with police officers attempting to receive information that would help them build a case against her. In this sense, Shakur’s description might appear to fulfill Jackson’s conditions above regarding the absence of “background conditions” that would remove any duty for her to tell the truth. Yet, note that it is not the absence of conditions of “reciprocity and state protection” that are at a loss here. Rather, state presence via the interrogative practices of law enforcement create conditions that impede her disclosure of information to her providers. She also writes of the hospital as being “glaring white. Everybody i see is white … [The hospital] is elegant and clearly for rich people. I am probably the first Black person who has ever been in this room. And the only reason i am there is for security. They have sealed off the doors and no one can enter except through the sitting room next door where three state troopers are stationed. Two regulars and one sergeant” (Shakur 1987, 4; 8). Here, Shakur notes that the conditions of her medical care are, rather perversely, better than she might otherwise receive as a Black woman in the United States. That is, she is surveilled in facilities that are, on average, better than those available to many Black people in the country. In this sense, Shakur subtly suggests that law enforcement recognizes that there are material benefits afforded to them by their use of this particular medical facility (benefits that would likely not be available in more overcrowded or underfunded community hospitals). Later, during her incarceration in Middlesex County Workhouse, Shakur writes of being denied, on multiple occasions, visitations with medical specialists and denied equipment necessary to rehabilitate her arm and broken clavicle. She states that she had to pursue a court order to permit her to receive treatment from a physical therapist, although the court order only permitted a specialist from Middlesex County and none were available in that county for treatment at the prison (Shakur 1987, 49). Additionally, she writes of having her clavicle brace taken by security staff because it contained a half-inch metal buckle (Shakur, 57). To return the brace, a bone specialist had to make a case to the prison warden on her behalf (Shakur 1987, 57–58). Furthermore, Shakur’s lawyers plead to the presiding judge of Shakur’s case to allow her to receive treatment from an OB/GYN of their choosing during her pregnancy while she was incarcerated at Rikers Island Correctional Institution for Women. Throughout her pregnancy, Shakur writes that her preferred physician, Dr. Ernest Wyman Garrett, a Black physician chosen by her attorneys, was often surveilled during their medical examinations by a court-appointed white physician. This arrangement also led to fewer appointments with Dr. Garrett because the court-­appointed doctor could not attend their scheduled appointments (Shakur 1987, 141). Lastly, regarding her chosen health provider, Shakur writes of Montefiore Hospital and the Health and Hospital Corporation going to court to prevent Dr. Garrett from delivering Shakur’s child, and winning the case on the grounds that “since [she] was a prisoner it was not necessary for [her] to have a doctor of [her] choice (Shakur 1987, 142). However, she protested this decision by demanding that

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she would “deliver the baby herself” and refuse all medical service by the hospital until Dr. Garrett was permitted to see her and deliver the child (Shakur 1987, 143). Additionally, Shakur writes that there was a demonstration held outside the hospital and a press conference held by Dr. Garrett and her attorney, Evelyn Williams, to demand her “right to choose the doctor who would deliver [her] baby” (1987, 143). It is important to frame a few significant issues regarding the relationship between health care and punitive industries here. Within the literature on correctional healthcare, this institutional relationship is sometimes framed as a set of “dual loyalties” between health care providers and prison administration or state agencies (Pont et al. 2012). The term refers to competing aims between therapeutic functions and punitive/surveillance functions, and we see the conflicts between these arise through the denial of medical judgments and medical equipment necessary for Shakur’s rehabilitation. Such conflicting loyalties or duties impede the provision of care within correctional facilities, and thereby perpetuate nonideal and dysfunctional settings in which patients receive health care. Beyond this, however, the scenarios described above, all suggest what Ana Clarissa Rojas Durazo (2006), Dean Spade (2015), Alan Berkman (2003), and other critics of mass incarceration have described as an intricate relationship between the medical industrial complex and the prison industrial complex (Rojas Durazo 2006). Specifically, Rojas Durazo, writing about the medicalization of domestic violence, states that “a stop at the hospital can lead to criminal charges” (2006, 181). Rojas Durazo writes of the danger in seeking treatment at medical facilities in which police officers and medical providers both become involved in the enforcement of the law and processes of incarceration, detention, and deportation (2006). She states: The structured goals of the medical industrial complex are to heighten profits, legitimate the state, and maintain the dominance of the western medical model, which, in turn, perpetuates racism, classism, and heterosexism (2006, 181).

What the Young Lords referred to as a “health empire,” Rojas Durazo names as a set of institutions and companies that are “organized and structured to reflect and reproduce society’s class, racial, and gendered hierarchies” (2006). This stance on medical institutions embeds them within the maintenance structures of white supremacy, heteropatriarchy, and capitalism, and thus analyzes medical institutions as complicit and supportive of punitive institutions and the commercial interests sustaining them. In a similar vein, Spade, analyzing structural forms of harm impacting transgender communities across the United States, describes what he calls “administrative violence” (2015). Administrative violence, as Spade describes in an interview is, “the concept that administrative systems create narrow categories of gender and force people into them to get their basic needs met” (Oswin 2014). For example, Shakur’s classification as a “prisoner, i.e. someone under state custody,” creates the administrative justification for denying her access to choose her OB/GYN. Spade’s interpretation of administrative violence applies to the constraining of access to basic social goods such as health care, housing security, food security, freedom from violence and humiliation, etc., through the enforcement of gender norms, which often severely impact transgender and gender nonconforming prisoners. In

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Shakur’s case, her denial of access to a provider of her choice occurs through the “ungendering” of prisoners through formal—i.e. administrative—measures of equality.3 That is, as Angela Davis has argued, late twentieth century prison reform often gave rise to a “separate but equal” model for gender-segregated confinement. She writes: Paradoxically, demands for parity with men’s prisons, instead of creating greater educational, vocational, and health opportunities for women prisoners, often have led to more repressive conditions for women. That is not only a consequence of deploying liberal—that is, formalistic—notions of equality, but of, more dangerously, allowing male prisons to function as the punishment norm (Davis 2003, 75–76).

In this sense, Shakur’s denial of a doctor of her choosing enacts a formalistic rule regarding health care access in prisons. While prisoners have a constitutional right to health care established via Estelle v. Gamble (1976), including access to professional medical judgment and treatment, they do not have a right to a physician of their choosing, as the courts echoed in Shakur’s case. As such, despite her pleas to her attorney “to get a doctor that we can trust,” and her insistence that “It’s very important for a woman to go through the birth experience with people she trusts,” she is administratively prevented from receiving treatment from a health care provider that she deems trustworthy (Shakur 1987, 127; 144). While this aspect of medical ethics is complicated and beyond the scope of this paper—i.e. that patient’s have a “right” to choose their physician—Shakur is on firm ethical ground about her right to refuse treatment, and she utilizes this strategy as a means to leverage access to the provider of her choice. Since Elmhurst Hospital was concerned about the risk of a lawsuit resulting from her delivery of a child without medical supervision while she was under their charge, she eventually signs a liability waiver on the condition that they allow her to be treated by Dr. Garrett. In this sense, Shakur’s understanding of health care policy, law, and gender norms regarding childbirth result in allowing her to access the resources that she needs, despite the actions of the hospital, courts, and security administration.

14.2.2  C  omments Regarding Interactions Between Health Care Providers and Patients Shakur’s autobiography provides detailed descriptions of complicated interactions between Shakur and her health care providers. Importantly, she does not present a single-sided view of the relationships she has with her providers. At times, she describes doctors who are cruel, wanton, and careless, and other times, she offers images of sympathetic, concerned, and helpful caretakers. In this sense, her autobiography serves as an in-depth study of the complexities of nonideal 3  For more on the theoretical resonances of the term ungendering in relation to anti-Black racism, see Spillers (1987).

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patient-­ provider relationships under conditions of incarceration. For example, Shakur recounts an interaction with a nurse with a German accent who provides Shakur with a call button that she uses to bring in nurses when police officers are abusively interrogating her (1987, 9–10). The officers are “punch[ing],” bang[ing], pok[ing], and prod[ding]” her while she is being held under police custody at Middlesex General Hospital, and the nurse becomes witness to this abuse and uses medical surveillance and medical judgment to prevent it (Shakur 1987, 9–10). Namely, when one of the troopers asks the nurse to disconnect the call button, the nurse replies “No, there is no way to remove it. If you pull it out, it will just keep ringing in the nurses’ station. She is having difficulty breathing and she needs it” (Shakur 1987, 9–10). Shakur also recounts the actions of two Black nurses who were kind to her during her hospitalization, one of whom brought her three “carefully selected” books during her stay: a book of Black poetry, Black women in white America (Lerner 1972), and Siddhartha (Hesse 1922) (Shakur 1987, 16). In such cases, Shakur writes of the tenderness of these nurses, and the significance of such forms of care appears to facilitate her interactions with medical providers, thereby creating conditions that might enable the building of trust between them. Unfortunately, however, a number of other interactions with providers demonstrate that correctional medicine is fraught with unjust and uneven patterns of bias, neglect, humiliation, and physical and psychological abuse. For example, a prison doctor that she visits during her period of incarceration at Middlesex County Workhouse refuses to provide her any treatment to rehabilitate the nerve damage in her arm. He denies her requests for access to materials that might allow her to regain motor control in her hand (e.g. writing/drawing materials, a rubber ball, or a rubber grip). She also states that she has heard that peanut oil may help aid the movement in her arm. After making this request, the doctor replies: Peanut oil? … That’s a good one. I can’t write a prescription for that now, can I? My advice to you is to forget about all of that stuff. You don’t need any of it. Sometimes in life we just have to accept things that are unpleasant. You still have one good arm (Shakur 1987, 48).

In this passage, the doctor expresses a condescending tone and refuses physical therapy for Shakur’s injured arm. Eventually, Shakur’s attorney petitions for her to receive peanut oil, a rubber grip, and writing materials; these are approved by the court and permitted to her during her confinement (1987, 49). Shakur also has an interaction with a prison doctor who knowingly misleads her about her pregnancy and conducts a pregnancy test on her without her consent. She visits the doctor on multiple occasions describing symptoms of drowsiness, dizziness, increased hunger, a growing feeling of debility, and an upset stomach (Shakur 1987, 121–122). Shakur suspects that she may be pregnant, but does not disclose this to the doctor, although she writes that she “dropp[ed] hints” to him about the possibility of a pregnancy (Shakur 1987, 121–122). He diagnoses her with an intestinal condition and returns her to her cell. Eventually, after taking urine samples but failing to disclose the reason for these samples, Shakur is called into the doctor’s office (Shakur 1987, 122). She writes the following about their interaction in the office:

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When the doctor called me into his office, i knew he was going to tell me i was pregnant. Instead, he was smug and acted really on the stupid side. He kept making snide remarks and i could tell he was trying to make fun of me. I asked him what was wrong with me and he repeated the same old stuff about a bowel disorder. Then he asked me some questions about my sex life (Shakur 1987, 122).

Shakur responds by stating “Ask your momma about her sex life,” and slams the office door on her way out (Shakur 1987, 122). Later that day, she learns from her attorneys that she is pregnant. Without her knowledge or consent, the physician had disclosed the results of her pregnancy test to the judge (Shakur 1987, 122–123). When she finally confronts the doctor about why he lied and mislead her, she recounts that the doctor stated: “Well, you lied. I just figured I’d get back at you. Anyway, you found out, like I knew you would” (Shakur 1987, 125–126). At first glance, the actions of these doctors may indeed appear outright cruel. However, beyond the potentially malicious intentions of these providers, Shakur’s interactions with these doctors suggest that her denial of physical therapy, as well as the misleading and deceptive interaction with her provider, result from conflicting aims between punishment and caregiving. Recall the concept of dual loyalties mentioned above. The denial of physical therapy for her arm results from the security constraints of the prison wherein peanut oil, writing materials, and shoulder braces are assumed to pose security risks. Despite the need for these materials, the demands to ensure the maintenance of the security of the prison outweigh the doctor’s therapeutic role in prescribing further care. Secondly, regarding her pregnancy test, the doctor discloses the results of her test to a judge and willfully deceives her about this process perhaps because he knew that the fact of her pregnancy, conceived while she was incarcerated, would serve as evidence that she was violating prison policy. In this instance, the legal and policy-related concerns of the prison override the physician’s decision to treat the patient and to disclose medical knowledge to her about her pregnancy. These interactions are painful recollections by Shakur that document the mistreatment of prisoners during incarceration and the opportunities for deception and providers withholding medical information from patients. Thus, unlike the conditions of veracity espoused by idealizing bioethicists regarding the role of providers in ensuring honest and transparent interactions with patients, Shakur’s experiences, like those of many incarcerated persons, reflect the overriding values of punishment industries in determining the transmission of medical information. More generally, the medical encounters in Shakur’s autobiography provide a picture of a very complicated negotiation among incarcerated patients with their health care providers. Although trust must be earned by health care providers outside of carceral settings as well, under conditions of confinement, prisoners must constantly assess the punitive, and often violent ends of prisons, jails, and detention facilities. As correctional health care analysts themselves attest, To act within the ethic of their profession, [correctional] health care providers must act counter to the prevailing ethic of the location. Between provider and patient, mutual trust and respect must exist in order for the relationship to work, i.e., to provide the support for diagnosis, care and treatment. The inmate must trust that the physician will act only in the inmate’s best interest, will be his/her advocate and will place his/her health needs above all

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other considerations. Most providers enter correctional health care with these values, but they are challenged immediately and constantly by the overriding assumptions and norms of corrections (Anno 1991, 55).

Thus, given that providers are often called to report to judges, security personnel, and prison administration alongside their medical roles, these conditions foster an environment for diminishing the capacities for patients and providers to develop what Jackson describes as conditions for mutual reciprocity and respect. Namely, as Pont et al. note, health care providers are often required to assist in the punitive aims of carceral facilities by participating in body cavity searches, disclosing the results of blood, urine, or other tests, engaging in force-feedings or forced administration of medication, or providing health screenings to determine whether a patient is able to be physically restrained (2012). In this manner, the same providers who are meant to uphold a therapeutic role in their relationship with patients are also serving the broader aims of punishment industries: the control and maintenance of persons convicted of crimes.4

14.2.3  C  omments Regarding Pregnancy and Childbirth During Incarceration Lastly, we can examine accounts in Shakur’s autobiography about her experiences of pregnancy and childbirth while incarcerated. Touching on important issues of reproductive justice, Shakur writes that prior to receiving care by Dr. Garrett, her prison doctor recommends that she abort the fetus, and he suggests that he would deny her treatment for her diagnosed high-risk pregnancy. After informing her that she might miscarry, Shakur tells the physician that she wants to continue the pregnancy and she requests to see an OBGYN, not a general practitioner. She notes that the doctor denies her this request and says It would be best for everybody concerned if you have an abortion, no matter which way you have it…My advice to you is that you should go to your cell and lie down … And if you go to the bathroom and see a lump in the toilet, don’t flush it. It’s your baby (Shakur 1987, 126).

The horrifying unethical and callous remarks of the doctor, as documented by Shakur, lead her to fear that “they were trying to kill [her] baby” (Shakur 1987, 127). It is this interaction with the prison physician that lead her legal team to request a Black doctor who they trusted to ensure the health and wellbeing of Shakur during her pregnancy and birthing process. Importantly, Dr. Garrett testifies on Shakur’s behalf to the courts that she required hospitalization as a necessary precautionary measure during her pregnancy, that she could not stand trial while pregnant, and that she should not be shackled during her pregnancy due to the stress and harm caused by this form of constraint. 4  Shakur recounts an experience of having her vagina and rectum searched by a prison nurse, and the anger and humiliation that it caused her (1987, 83–84).

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Also, interestingly, Dr. Garrett plans, if the judge is not persuaded by medical expertise, to publicize the information about her medical treatment at the prison to right-to-life groups, and claim that the prison is effectively “committing murder” of Shakur’s unborn fetus. Here, Shakur’s legal team also demonstrate subtle negotiations of administrative forms of violence that directly and disproportionately impact women of color. In this case, using the language of the “right-to-life” to garner public outcry, Dr. Garrett develops a carefully orchestrated proposal that seems to support the values of what would later become a reproductive justice framework, values which are reinforced elsewhere in Shakur’s autobiography. As a movement formed and led by women of color in the 1990s, the basic framework of reproductive justice, as described through the landmark reproductive justice organization SisterSong, is to defend “the human right to maintain personal bodily autonomy, have children, not have children, and parent the children we have in safe and sustainable communities” (SisterSong 2019). Among the issues addressed through this framework is the discourse between pro-life efforts to repeal and restrict access to abortions, and pro-choice efforts to ensure safe and non-­ stigmatizing options for people to make an individual decision about whether or not to terminate their pregnancy. Importantly, a reproductive justice framework brings into purview the long history of eugenics and population control efforts through state and medical institutions, including forced sterilizations and selective abortion. Additionally, as Loretta Ross states, reproductive justice efforts seek to transform the societal conditions of racism, heteropatriarchy, capitalism, anti-Semitism, and religious fundamentalism that have long-sought to diminish the lives and futurity of people of color, queer and trans people, religious minorities, and poor people across the globe (Ross 2006, 54). Within this framing, Shakur’s decision to pursue her pregnancy as an incarcerated Black woman can be placed within a broader historical and social context in which Black women, “women on Native American reservations, incarcerated women, immigrant women, and poor women across the board [have their reproductive behavior] policed by an adroit series of popular racist myths, fierce state regulation, and eugenicist control” (Ross 2006, 61). In this register, Shakur writes in response to the prison doctor’s threat of denying treatment that “this baby was our hope. Our hope for the future” (Shakur 1987, 127). While childbearing is by no means a mandate or prescriptive within a reproductive justice framework, her statement harkens to her specific desire to pursue her pregnancy and the eventual birth of her daughter as a means to promote the survivability and futurity of Black people. Moreover, recalling Perkins’s definition of the genre of political autobiography, this statement can be read as an illustration of the political aims of her memoir “to use her own story both to document a history of the struggle and to further its political agenda” (Perkins 2000, 7). Thus, the collective undertones of Shakur’s plea to her attorney that she needs “a doctor we can trust” speaks to the profound and systemic shared patterns of distrust that mark access to reproductive health care among communities of color, in general, and incarcerated people, specifically (Shakur 1987, 127).

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14.3  Conclusion I have offered here a series of reflections on the relevance of Shakur’s autobiography as a corrective to patterns of neglect, denial, and doubt that prevail within ideal-­ theoretical framings of veracity within bioethics. By charting the mutual imbrication of punishment and medical institutions, as well as the functioning of dual loyalties for practitioners, and the severe impact of the abuse and mistreatment of patients under conditions of confinement, Shakur’s autobiography stands as more than mere testimony to a set of nonideal conditions. Rather, her work was and is a call for societal transformation and resistance to structural harms impacting oppressed persons worldwide. When read in this light, trust-building, truth-telling, and veracity in bioethics can be understood as practices and values that uphold or deny those resistant and transformative ends. To clarify such potential transformations, consider what prison abolitionists describe as “non-reformist reforms,” a term that refers to forms of direct action, policy change, and community support that seek to “reduce the power of an oppressive system while illuminating the system’s inability to solve the crises it creates” (Berger et  al. 2017). Such non-reformist efforts respond to the assumed tension between seeking an end to punishment industries, while also seeking to embetter the lives of those currently suffering under those industries. For example, some critics allege that improving current conditions within prisons and jails may only extend the institutional life of prisons, and increase public acceptance of carceral strategies. Reforms within prison health care, prison programming, and so on are thus viewed as sustaining prison industries. These efforts are distinguished from direct changes that might seek to provide essential services while also diminishing the goals and futurity of punishment systems. On this point, Thomas Mathiesen explores this distinction: “Reformist” reforms have goals which are subordinated to the facilities and the presuppositions of a system and a policy presented by the adversary. A “non-reformist” reform, however, is not geared to whatever is possible within the framework of a given system, but to that which “should be realizable” in view of human demands and needs. A “non-reformist” reform, in other words, goes beyond the facilities and presuppositions presented by the adversary’s system (Mathiesen 2015, 25).

In this sense, we can examine responses to the complicated nonideal conditions of carceral medicine with such non-reformist aims in mind. That is, rather than continue the aims of punitive systems that perpetuate conditions of injustice, an abolitionist framing of carceral medicine creates options forward that do not sustain a notion of the future that includes and relies on carcerality as a response to social problems. Alleviating the harms of the current prison system in the U.S. would require more than simply closing the doors of prisons. Instead, just as the abolitionist project articulated by W.E.B.  Du Bois framed the abolition of slavery as a comprehensive project that required both the dismantling of the formal institution of slavery, as well as the construction of new institutions that would replace the social

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order that was created and sustained via the trans-Atlantic slave trade and its afterlives, prison abolition is also a constructive project (Davis 2005, 92). One component of such as approach is to delink the relationship between crime and punishment. That is, as Angela Davis states: “punishment” does not follow from “crime” in the neat and logical sequence offered by discourses that insist on the justice of imprisonment, but rather punishment—primarily through imprisonment (and sometimes death)—is linked to the agendas of politicians, the profit drive of corporations, and media representations of crime (Davis 2003, 112).

One task, then, for bioethicists and health care practitioners, advocates, and activists is to undermine formations of criminality that frame persons convicted or accused of crimes as individual wrongdoers or as less deserving of basic goods and services. To clarify, one context in which to see such a distinction between reformist reforms versus non-reformist reforms is in the training guidelines and manuals for correctional nursing. Recall Hoberman’s suggestion—regarding how to shift interpretations of racism within biomedicine—included a plan to transform the educational curricula of medical schools. Within such a framing, we could turn to professional organizations and documents that frame the ethical principles and guidelines for their respective professions. For example, Lorry Schoenly offers a chapter on such principles in the collection Essentials of correctional nursing (2013). Drawing from the guidelines of both the American Nurses Association and the American Association of Colleges of Nursing, Schoenly outlines the importance of values such as altruism, autonomy, human dignity, integrity, and social justice within correctional nursing (Schoenly 2013, 20–24). Moreover, Schoenly acknowledges the structural barriers to care within carceral settings. She writes: Caring in correctional nursing practice may be moderated by several environmental factors. One factor is the incongruent missions of nursing and the prevailing security culture in which it is practiced. Nurses must continually negotiate boundaries between the values of custody and the values of caring; continually guarding against co-opting security values in practice. Caring can be difficult in an anti-therapeutic environment (Schoenly 2013, 30).

Schoenly comments here appear to acknowledge the conflicting aims of punishment industries and therapeutic industries within correctional medicine. However, this chapter and the collection in which it is included fails to question the necessity or social functions of prisons, jails, and detention facilities themselves. Accordingly, we find a missed opportunity for correctional nurses to take a politicized stance that seeks to transform the administration and practice of nursing in carceral facilities. Additionally, much of the remaining literature in the chapter and collection frames correctional medicine as posing unique challenges to the practice of nursing. For example, issues like dealing with the conflicting aims of “security culture” and the “missions of nursing” are treated as particular to correctional facilities. Yet, as Shakur’s autobiography attests and Rojas Durazo defends, persons who are hospitalized in any facility can be subject to interrogation and criminalization. In this way, the security apparati of prisons, jails, and detention facilities are structured in ways that are concentrated and apparent within these institutional settings, but

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they are not unique to these settings. Rather, as Michel Foucault asks amidst his examinations of the relevant linkages between hospitals, asylums, and prisons: Is it surprising that the cellular prison, with its regular chronologies, forced labour, its authorities of surveillance and registration, its experts in normality, who continue and multiply the functions of the judge, should have become the modern instrument of penality? Is it surprising that prisons resemble factories, schools, barracks, hospitals, which all resemble prisons? (1995, 227–228).

From this provocative question, one abolitionist step forward is to reshape medical curricula within the politicized purview of the structuring of carceral power. Medical institutions are not immune or separate from the organizing functions of security, surveillance, and racialized and gendered patterns of criminalization. To assume otherwise is to drift back into a whitetopic imaging that considers the criminal punishment system to be a well-ordered constellation of institutions that protect the needs of the U.S. citizenry. Yet, this assumption could not be farther from the descriptions and demands made by Shakur, the Black Liberation Army, the Movement for Black Lives, and the many other groups who have sought universal access to health care alongside an end to police violence, incarceration, and economic exploitation within the U.S. and abroad. For example, what the Young Lord’s described as a “health empire” shifts the frame of medical industries from one of localized neglect impacting primarily Puerto Rican and African American communities in the South Bronx, to one of addressing the broader financial and political interests that benefit from maintaining systemic inequalities in health care, education, and economic mobilization (Enck-­ Wanzer 2010, 190). The Young Lords condemned the neglect of the hospitals, buildings, and garbage-strewn streets of the South Bronx as a patterned refusal made by wealthy New  York administrators and politicians who benefitted from redirecting funds away from these neighborhoods. Similarly, as contemporary activists against environmental racism are pointing out today, lead poisoning within Flint, Michigan has called attention to what Laura Pulido has argued is the devaluation of Black lives and the subordination of Black lives to the “goals of municipal fiscal solvency” (Pulido 2016, 1). Austerity measures imposed within Flint sought to restore financial solvency after the city’s General Motors plant polluted the Detroit River as a source for water, and long after the infrastructure of the city had been left to decay. Pulido notes that because many wealthy companies, white people, and the state and federal government had largely abandoned Flint for decades, the story of the city’s lead poisoning is one of racial capitalism whereby the primarily Black residents of Flint are treated as expendable surplus populations (Pulido 2016, 10–12). Akin to Dula’s recommendations described above, in both of these cases--the South Bronx in the 1970s and Flint, Michigan today—we see scholars and activists demanding health and environmental initiatives that maintain a focus on the policies and benefactors of the systemic medical and infrastructural neglect of poor racialized populations. In a similar vein, we can turn to an analysis of whitetopic framings within correctional health care. Rather than assuming that a few extra case studies here or

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there would shift readers expectations about carceral facilities, or that added nursing staff would resolve the deep structural flaws within carceral medicine, we must reinterpret the function of medicine and health care within the purview of the everyday existence of structural oppressions, including but not limited to capitalism, white supremacy, structural misogyny, ablenationalism, and heteronormativity and transphobia. From this framing, neglect, abuse, and mistreatment in prisons, jails, and detention centers are not aberrations within an otherwise functioning system. Rather, the harms of carceral medicine are the constitutive norms of punishment industries and their affiliated institutions. Regarding veracity, then, creating the trusting relationships among caregivers and those receiving care may require a politicized commitment to eradicating systems of oppression. Consider, in this vein, Shakur’s relationship with the nurse who demonstrated a commitment to ending the harassment and physical assault that she was receiving at the hands of police officers. The nurse helped build the possibility for trust and truth-telling that might begin to transform the layers of legitimate distrust and skepticism that many people of color have within clinical medical settings, in a subtle gesture of support through the provision of medical staff as a form of protection from further abuse by the police officers who were harassing Shakur. In this way, were major correctional health care organizations and practitioners to develop pronounced stances that went beyond the carceral system’s own punitive ends, and affirmed the need to abolish such systems through, in Davis’s words, “making them obsolete,” perhaps we would begin to shift from a whitetopic framing to one of more liberatory potential. For bioethicists and medical professionals alike, then, veracity as a value within the practice of health care need no longer be an abstracted theoretical horizon, but rather, following Mills, “liberation, were it achievable, would be utopia enough.”

References American Medical Association. 2017. Code of medical ethics of the American Medical Association. Chicago: American Medical Association. Anno, B. Jaye. 1991. Correctional health care: Guidelines for the management of an adequate delivery system. Chicago, IL: National Commission on Correctional Health Care. ———. 2001. Correctional health care: Guidelines for the management of an adequate delivery system. U.S. Department of Justice: National Institute of Corrections. Beauchamp, Tom L., and James F.  Childress. 2001. Principles of biomedical ethics. 5th ed. New York: Oxford University Press. Berger, Dan, Mariame Kaba, and David Stein. 2017. What abolitionists do. Jacobinmag.com. August 24, 2017. https://www.jacobinmag.com/2017/08/prison-­abolition-­reform-­mass-­ incarceration. Accessed 15 Oct 2019. Berkman, Alan. 2003. Engaged in life: Alan Berkman on prison health care. In The new abolitionists: (Neo)slave narratives and contemporary prison writings, ed. Joy James, 285–294. Albany: SUNY Press. Chase, Robert T. 2015. We are not slaves: Rethinking the rise of carceral states though the lens of the prisoners’ rights movement. Journal of American history 102 (1): 73–86. Davis, Angela. 2003. Are prisons obsolete? New York: Seven Stories Press.

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———. 2005. Abolition democracy: Beyond empire, prisons, and torture. New  York: Seven Stories Press. Dula, Annette. 2007. Whitewashing black health: Lies, deceptions, assumptions, and assertions – and the disparities continue. In African American bioethics, ed. Lawrence J. Prograis Jr. and Edmund D. Pellgrino. Washington: Georgetown University Press. Enck-Wanzer, Darrel. 2010. The Young Lords: A reader. New York: NYU Press. Foucault, Michel. 1995. Discipline and punish: The birth of the prison, trans. Alan Sheridan. New York: Vintage Books. Hesse, Herman. 1922. Siddhartha. New York: New Directions. Hoberman, John. 2012. Black and blue: The origins and consequences of medical racism. Berkeley: University of California Press. Hornblum, Allen M. 1999. Acres of skin: Human experiments at Holmesburg prison. New York: Routledge. Institute of Medicine. 2002. Unequal treatment: Confronting racial and ethnic disparities in health care. Washington, D.C.: National Academies Press. Jackson, Jennifer. 2002. Truth, trust, and medicine. New York: Routledge. Lerner, Gerda. 1972. Black women in white America. New York: Random House. Mathiesen, Thomas. 2015. The politics of abolition revisited. New York: Routledge. Mills, Charles. 1998. Blackness visible: Essays on philosophy and race. Ithaca: Cornell University Press. ———. 2005. ‘Ideal theory’ as ideology. Hypatia 20: 165–184. ———. 2007. White Ignorance. In Race and epistemologies of ignorance, eds. Shannon Sullivan & Nancy Tuana, 11–38. Albany: SUNY Press. ———. 2018. Through a glass, whitely: Ideal theory as epistemic injustice. Proceedings and Addresses of the American Philosophical Association 92: 43–77. Nelson, Alondra. 2013. Body and soul: The Black Panther Party and the fight against medical discrimination. Minneapolis: University of Minnesota Press. Oswin, Natalie. 2014. On normal life. Societyandspace.org. January 15. http://societyandspace. org/2014/01/15/on-­6/. Accessed 28 June 2019. Perkins, Margo V. 2000. Autobiography as activism: Three Black women of the sixties. Jackson: University of Mississippi Press. Pont, Jörg, Heino Stöver, and Hans Wolff. 2012. Dual loyalty in prison health care. American Journal of Public Health 102 (3): 475–480. Pulido, Laura. 2016. Flint Michigan, environmental racism and racial capitalism. Capitalism Nature Socialism 27 (3): 1–16. Rojas Durazo, Ana Clarissa. 2006. Medical violence against people of color and the medicalization of domestic violence. In Color of violence: The INCITE! Anthology, ed. INCITE! Women of Color Against Violence. Durham: Duke University Press. Ross, Loretta J. 2006. The color of choice: White supremacy and reproductive justice. In Color of violence: The INCITE! anthology, ed. INCITE! Women of Color Against Violence. Durham: Duke University Press. Satel, Sally. 2002. PC, MD: How political correctness is corrupting medicine. New  York: Basic Books. Satel, Sally, and Jonathon Klick. 2006. The health disparities myth: Diagnosing the treatment gap. Washington: American Enterprise Institute. Schoenly, Lorry. 2013. Ethical principles for correctional nursing. In Essentials of correctional nursing, ed. Lorry Schoenly and Catherine M. Knox. New York: Springer Publishing. Shakur, Assata. 1987. Assata: An autobiography. London: Zed Books. SisterSong. 2019. Reproductive justice. SisterSong.net. https://www.sistersong.net/reproductive-­ justice. Accessed 29 June 2019. Spade, Dean. 2015. Normal life: Administrative violence, critical trans politics, and the limits of the law. Durham: Duke University Press.

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Spillers, Hortense. 1987. Mama's baby, Papa’s maybe: An American grammar book. Diacritics 17 (2): 65–81. Umoja, Akinyele Omowale. 1999. Repression breeds resistance: The Black Liberation Army and the radical legacy of the Black Panther Party. New Political Science 21 (2): 131–155. United States District Court for the Southern District of Texas. 1980. Ruíz v. Estelle, 503 F. Supp. 1265. United States Supreme Court. 1976. Estelle v Gamble, 429 US 97. Veatch, Robert M. 2016. The basics of bioethics. 3rd ed. New York: Routledge. Victor, Elizabeth. 2019. Vulnerability and incarceration: Evaluating protections for prisoners in research. Lanham: Lexington Books. Washington, Harriet A. 2008. Medical apartheid: The dark history of medical experimentation on Black Americans from colonial times to the present. New York: Random House.

Chapter 15

Dying in Detention: Where Are the Bioethicists? Allison B. Wolf

15.1  Migrants Keep Dying in US Custody On December 8, 2018, 7-year-old Jakelin Caal Maquin, died in U.S. custody. A mere two and a half weeks later, on Christmas day, 8-year-old Felipe Alonzo-Gomez also died from the flu in U.S. custody (Jordan 2018; Montoya-Galvez 2018). They are not alone. Here are a few more cases: Raul Ernesto Morales-Ramos: On April 6, 2015, 44 year-old Salvadoran migrant Raul Ernesto Morales-Ramos died of organ failure from widespread cancer. He had been in detention for four years. Two independent medical experts agreed that he likely suffered from symptoms of cancer starting in 2013, but that they were essentially ignored for two years … Throughout this time, Morales-­ Ramos repeatedly begged for care and, in February 2015, he submitted a grievance in which he wrote, “To who receives this. I am letting you know that I am very sick and they don’t want to care for me. The nurse only gave me ibuprofen and that only alleviates me for a few hours. Let me know if you can help me” (Linthicum 2015).

Roxsana Hernandez: Roxsana Hernández, a 33-year-old trans woman came to the U.S. seeking asylum from Honduras. A week later, she was dead in U.S. custody (Green 2018). Soon after requesting asylum, Hernandez was held at a US Customs and Border Protection detention facility. She was cold, lacked adequate food or medical care, and was held in a [freezing] cell [known as an ice box] with the lights turned on 24 hours a day. A week later, she arrived at the transgender unit in the Cibola County Correctional Center in Milan, New Mexico – a privately run federal prison for men that contracts with ICE. The next day, she was taken to a local hospital with symptoms of pneumonia, dehydration and “complications associated with HIV.” Hours later, she was transferred to hospital in Albuquerque where “she remained in the intensive care unit until her passing” (Chavez 2018).

A. B. Wolf (*) Department of Philosophy, Universidad de los Andes, Bogotá, Colombia e-mail: [email protected] © Springer Nature Switzerland AG 2021 E. Victor, L. K. Guidry-Grimes (eds.), Applying Nonideal Theory to Bioethics, Philosophy and Medicine 139, https://doi.org/10.1007/978-3-030-72503-7_15

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An autopsy report showed that she was also beaten in custody (Garcia 2018). Moises Tino-Lopez: Moises Tino-Lopez, 23, had two seizures within nine days, each observed by staff and reported to the nurses on duty in the Hall County Correctional Center in Nebraska. He was neither evaluated by a physician nor sent to the hospital. During his second seizure, staff moved him to a mattress in a new cell, but, again, he was not evaluated by a medical practitioner. About four hours after that seizure, he was found to be unresponsive, with his lips turning blue. He was sent to the hospital but never regained consciousness and died on September 19, 2016. (Human Rights Watch 2018)

Raquel Calderon de Hildago: 36-year-old Guatemalan, Raquel Calderon de Hildago, died Sunday at Banner Casa Grande Medical Center. She was taken to the hospital after medical staff at the Eloy Detention Center called paramedics following a series of seizures. She continued to experience seizures in the ambulance on the way to the hospital on November 27, 2016. She was the 15th person to die at that facility. According to an autopsy report, the seizures were caused by blood clots “throughout all the lobes of the right lung,” resulting from a leg injury sustained during her journey to the United States. Reportedly, Calderon de Hildago had difficulty walking at the time she was apprehended by the Border Patrol. (Gonzalez 2016)

Sadly, these six cases are not anomalies. In early  2019, 3 more children died in U.S. Customs and Border custody, including a 16 year old Guatemalan teenager, Carlos Hernandez Vasquez, who crossed the border in Texas (Van Sant 2019). Just six days earlier, a Guatemalan toddler died in U.S. Custody (Redlener 2019). As of September 20, 2019, 15 children had died at the US-Mexico border, including 21 month old Iker Gael Cordova Herrera, who drowned in the Rio Grande along with his 26-year-old mother, Idalia Yamileth Herrera Hernández, after they applied for asylum in the United States but were sent back to Mexico as part of the Trump Administration’s Remain in Mexico policy (Flores 2019). In 2018, at least 12 adults and 3 children died in U.S. detention facilities (American Immigration Lawyers Association 2019). In 2017, 12 people died in U.S. detention facilities and at least 10 women filed complaints against ICE for mistreatment that led them to miscarry. At the time of this writing, 26 people have died in US Custody during the Trump Administration (Sawyer 2019) and 74 people have died in U.S. detention facilities between 2010 and 2018 (over half of which were preventable) (Human Rights Watch 2018). I am not going to argue that these deaths are wrong  – I take that as obvious. Instead, my focus will be on what I take to be more surprising – the lack of engagement with the issue by bioethicists. As a bioethicist, I have always understood bioethics to be fundamentally about protecting patients from harm in the medical context and protecting people’s ability to have high-quality, non-oppressive, health care regardless of circumstance. While detention facilities may not constitute the typical health care setting to which bioethicists are accustomed, they are increasingly sites where sick migrants (many of whom are ill and injured from their journeys across the border) seek health care services but, often do not receive them. This should be where bioethicists enter the picture … but they, largely, have not. Why?

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This essay explores that question and proposes at least two possible responses: (1) matters of immigration are perceived as falling outside of the traditional scope of bioethics and (2) bioethicists have inadequate tools to assess nonideal concerns, like migrant health care, due to their reliance on ideal ethical theories. If I am right on these two points, then turning to nonideal approaches to immigration ethics and justice will help. I will now turn to the task of defending these claims.

15.2  W  hy Are Bioethicists Absent from Debates About Detainee Health Care (or Lack Thereof)? Some Ideas Let me begin with a claim I take to be uncontroversial: It is wrong that children are not receiving medical attention for the flu, that women are miscarrying in their cells because of unsanitary and abusive conditions, that people are having seizures without being referred to physicians for evaluation, and that people need to beg for pain medication as they die of cancer (and worse, not ever receive it). Yet, in the face of all of these things, we hear very little outcry from bioethicists. Why not? I do not think the answer is that they do not care or are uninterested. In fact, I think the opposite is true. So, what can explain this? I think the history of the field and how it has evolved can provide some insight. The field of bioethics is often understood as a response to ethical failures and abuses in medical research and clinical practice. Albert R.  Jonson, for example, dates the birth of bioethics to 1947, when the world witnessed the conviction of 23 physicians at Nuremberg for their assistance in Nazi experiments (Jonsen 1998). In his classic account of the history of bioethics, Strangers at the bedside, David Rothman traces the birth of bioethics a bit later to Harry Beecher’s whistle-blowing op-eds condemning medical researchers failure to seek and obtain consent from subjects (Rothman 1992). Regardless of the specific moment, most agree that bioethics came to be in response to abuses of patients and populations by researchers and physicians in the medical realm. In large measure, the focus of bioethics has remained the hospital, clinic, and medical research settings. Where it has ventured into policy discussions, bioethics has largely focused on policies affecting these settings, such as death and dying policy and access to health insurance.1 Because of this history, many, such as bioethicist Sally Satel, believe that bioethicists should avoid inserting themselves into social and political issues that they take to lie outside of the traditional scope of bioethics. In 2006, she told the American Society for Bioethics and the Humanities that professional groups “damage their credibility when they pronounce on issues outside of their expertise” (Satel 2010). This is because the job of the bioethicist is to deliberate and carefully assess issues,

1  Of course, I recognize that there are some exceptions to this rule. I am merely pointing out that mainstream bioethics and the topics it takes up have not deviated from those that led to the field’s founding.

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not find answers to what to do about them (Satel 2010). She repeated this position in 2010, when she stated: Finding the “right” moral answer—assuming for a moment one exists—is not the business of applied ethics. Is it politically desirable for society to credit a designated group called “bioethicists” with expertise in resolving the most difficult moral questions? If so, what is it that gives ethicists a more legitimate claim to wisdom about right and wrong than the rest of us? The matter of ethical expertise—what it looks like, who can claim it—is a profound one. The place of bioethics in the academy, in the clinical realm, and in society turns on it. For most of us, the very idea of the “right” answer to a complex moral dilemma seems absurd on its face. After all, its derivation depends upon which moral theory one favors: deontological, consequentialist, natural law, situational, and so on. (Satel 2010)

Satal is not alone in thinking this. As a result, many see engaging in analyses that go beyond developing principles and using them to guide assessments of medical practice, even those areas related to medicine, like health policy, as inappropriate and beyond the scope of bioethics. So, many would not think to enter into debates about topics like immigration, even if it is migrant health care. What about those who disagree with Satel? What about those who want bioethics to address immigration and related issues? They are often unable to do so because their tools (e.g. ethical principles) are inadequate. Again, we can see the roots of this in the evolution of the field itself. Before bioethics developed, medicine was largely self-regulated. Once it was clear that we needed bioethicists from outside of medicine to protect patients from being harmed, experts from outside of medicine, like philosophers, theologians, lawyers, historians, anthropologists, and sociologists were brought together to develop ethical codes to guide medical practice. Many of these outsiders were trained in the humanities. As a result, many newly minted bioethicists turned to ideal, Enlightenment ethical theories, especially those of Kant, to construct these guiding principles. Bioethics has largely continued this same strategy – in the face of a questionable medical practice, turn to ideal, abstract, ethical theory and its principles for guidance. Where we don’t turn to specific theories, we turn to principles of bioethics, such as Beauchamp and Childress’s four principles of bioethics: autonomy, nonmaleficence, beneficence, and justice, to guide us. The problem, though, is that these tools are inadequate. In their article, “Principalism, medical individualism, and health promotion in resource-poor countries: Can autonomy-based bioethics promote social justice and population health,” Jacquineau Azétop and Stuart Rennie argue that the individualist, autonomy-based, foundation of bioethics makes it impossible for bioethicists to address social justice concerns (Azétsop and Rennie 2010, 1). This is because the autonomy model assumes U.S. standards of wealth and power that do not apply to those in resource-poor situations, places too much responsibility on the patient, fails to capture how decisions are actually made in the clinical context, and does not address the fundamental questions facing patients in resource-poor circumstances who are not concerned about informed consent as much as access to quality and affordable health care (Azétsop and Rennie 2010, 2).

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I think Azétop and Rennie’s critique is apt well beyond the context of resource-­ poor countries and is especially insightful in relation to migrant health care under the circumstances we are discussing. For example, while protecting patient autonomy matters, as the case studies show, migrants are less concerned in these moments about informed consent and instead seek access to health care in the first place. In fact, in all of the cases presented at this essay’s outset, the patients could not access care at all. In this context, applying the principle of autonomy seems to miss the point completely because it focuses on issues that do not connect to migrants’ actual experiences; restricting our ethical focus to autonomy fails to note countless issues facing migrants, such as lack of access, discrimination, and violence from migration authorities. Worse, framing the issue as one where immigrants’ health care wishes are not respected makes bioethics appear to have nothing to offer. Now, someone could object that I am looking at autonomy too narrowly. After all, under  the Kantian framework, autonomy is fundamentally about protecting human dignity and respecting human rights; both are clearly being violated in immigration detention centers. My objector may argue that this framework can be useful and I should not throw out the traditional tools of bioethics so soon. But this objection misconstrues my point, namely that the problem of migrants dying in U.S. custody is not fundamentally wrong because it violates patient autonomy but rather, as I have argued elsewhere, it is wrong because it perpetuates global oppression (Wolf 2019). In other words, the relevant issues are those of social justice, oppression, and their relationship to health care, not autonomy. I do not just want to pick on autonomy, however. We see similar limitations and shortcomings with the other principles of bioethicists too. Let’s consider concerns regarding the allocation of resources. In general, philosophers tend to reduce all questions of justice to distributive justice, which Iris Marion Young defines as, “the morally proper distribution of social benefits and burdens among society’s members” (Young 1990, 16). On this view, “all situations in which justice is at issue are analogous to the situation of persons dividing a stock of goods and comparing the size of the portions individuals have” (Young 1990, 18). So, justice is primarily focused on how to fairly divide society’s resources. Mainstream bioethics tends to adopt this understanding such that health care justice is fundamentally conceived as being about determining a fair division and distribution of society’s health care resources. As a result, the question for mainstream bioethics is how do we meet virtually unlimited health care needs with limited resources. In this framing, health care justice is about making “tragic choices” (Calabresi and Bobbitt 1978) such that some people will not be able to get what they need because we simply do not have enough to meet everyone’s health care needs. While I cannot detail the many problems with this approach to health care justice here, I want to highlight two – the way that this approach presumes a closed society and the way it pits the health care needs of dying migrants against those of citizens. Here is what I mean. On the distributive approach, the core question of justice is how to distribute “social benefits and burdens among society’s members” (Young 1990, 16). It has nothing to say about what distributive obligations may exist to non-­ citizens. In suggesting that the resources belong to the specific society and that such

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resources are scarce, this approach places immigrants in competition with citizens for the same pool of resources; if we only have so many resources, how should we allocate between citizens and immigrants (especially when we do not have sufficient resources to cover all citizens health care needs)? Thus, immigrants’ rights to health care are then pitted against those of citizens since we only have so many resources to go around.2 In this approximation, so long as proper procedures of allocation are followed, if there are insufficient resources for immigrants, then that may be tragic but it is not unjust. After all, since the resources belong to members of a certain society and immigrants are not part of the society, it is unclear what claims of justice they have to those resources. So, even if bioethicists enter this arena, they are relying primarily on theories that only apply to members of nation-­ states and cannot conceive of how to include obligations to non-citizens. Again, then, the bioethicists will have little to offer this discussion. To summarize, the history of bioethics tends to restrict it to matters of protecting patients in the contexts of medical research and clinical practice, which leads to it wrongly limit its scope and rely heavily on abstract principles like autonomy. This makes it appear as if issues like immigrant health are outside of the scope of bioethics. Beyond this, for those who reject this view, the tools bioethics offers to analyze situations of migrant health in detention centers are often insufficient to the task. In light of this, it is understandable that we are not seeing bioethicists deeply engaged in discussions of immigrant deaths in U.S. custody. As understandable as all of this may be, however, we should still challenge this circumstance. Bioethicists need to be engaged outside of their traditional areas.3 And this is slowly starting. The Hastings Center now, for example, has a project on Undocumented Health Care and Nancy Berlinger has written an essay entitled, “Migrants’ lives, immigration policy, and ethics work,” offering some general critiques of the Trump Administration’s family separation policy and the need for bioethicists to educate themselves about immigration policy (Berlinger 2018). I wholeheartedly support these recent changes and Berlinger’s sentiments; I think more of us should be doing this. In particular, we must be speaking out and resisting the sub-par health care for migrants in U.S. detention facilities. Bioethicists certainly need to be condemning the inadequate quality and quantity of health care in U.S. detention facilities that have led to dozens of migrant deaths. But, for reasons just detailed, I think to do so well, we should look beyond the traditional toolbox bioethicists tend to employ. Specifically, since we are discussing immigration, I

2  In fact, when I have spoken of this around the United States and in Latin America, the most common refrain I hear is: “I really feel for these people but how can I worry about health care for them when we can’t even care for our own people.” 3  I am certainly not the first person to highlight this. Clearly, the impetus for this collection is recognition of this fact. In addition, more bioethicists are speaking out on these matters. Ruth Macklin, for example, has stated that bioethics must take stands on social justice issues, especially inequality. Catherine Myser, Camisha A. Russell, Derek Ayah, and John Hoberman have all said bioethics needs to speak out more on issues involving racism. Finally, the Johns Hopkins Berman Institute of Bioethics highlights its commitment to social justice.

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suggest that looking to the nonideal immigration justice literature will be particularly fruitful, especially Shelley Wilcox’s global harm principle. I will now explain Wilcox’s nonideal theory of immigration justice and highlight its promise for bioethicists by applying it to our discussion of migrant deaths in U.S. custody.

15.3  A  Potential Solution: Wilcox’s Nonideal Theory of Immigration Justice Amy Reed-Sandoval characterizes the immigration justice literature as falling into two camps  – the “Classic Open Borders Debate” and the “New Open Borders Debate” (Reed-Sandoval 2016). The Classic Open Borders Debate tends to mirror mainstream bioethics literature in that its methodology tends to occur in the realm of ideal and/or institutional theory and, to the extent that it proposes solutions to issues in immigration, they are abstract or “utopian” (Reed-Sandoval 2016, 14). As such, it will likely not help bioethicists move past the issues I highlighted in the previous section because it has many of the same limitations. The New Open Borders Debate, however, which is evolving out of feminist theory, critical race theory, Latin American philosophy, and other nonideal thought is much more promising. This literature makes normative claims about the traditional immigration justice questions about state’s rights to exclude and people’s rights to migrate while also: (1) expanding those questions; (2) using nonideal, feminist, and/ or critical race methodologically; (3) drawing on particular migrant experiences; (4) referring to specific nation-state borders; (5) presenting new ways of thinking about borders and migration; and (6) discussing aspects of migration unrelated to open borders (Reed-Sandoval 2016, 14). Before getting into why Wilcox’s nonideal approach to immigration justice is particularly valuable to bioethicists concerned with migrant health, I want to say a few words about the benefits of nonideal approaches more generally. Many support moving to nonideal theory in immigration justice for the same reasons they support moving away from ideal theory in political philosophy more generally. As Laura Valentini reminds us, a major push to critique traditional, ideal, political philosophy is “a frustration with the subject’s perceived lack of influence on real-world politics” (Valentini 2012). There is an increasing sense that this type of political philosophy “is defective because it is of little (possibly no) practical help” (Valentini 2012). In other words, there is increasing restlessness with the fact that ideal political philosophy does not seem integrated in current political debates and has little to offer them (how often do we see a political philosopher invited to participate, for example, as pundits or analysts of current political affairs?). For those who believe that part of the job of political philosophy is both to engage the world and provide guidance on how to improve it, this is a serious problem. Among these, the most relevant for our purposes is the critique of ideal theory waged by Charles Mills, namely that the traditional ideal approach to political philosophy is

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both silent on oppression and perpetuates privilege. Mills explains, “almost by definition, it follows from the focus of ideal theory that little or nothing will be said on actual historical oppression and its legacy in the present, or current ongoing oppression” (Mills 2005, 166 and 168). Moreover, as Susan Babbit highlights, often the oppression is built into the theories themselves – in their concepts, definitions, and foundations. This means that oppression will not be identified, let alone rectified, by such theories. Specifically, Babbitt says: “If sexism, say, is embedded in some of the concepts and terms in which information and events are understood, including conceptions of justice, it cannot simply be taken for granted that considerations of justice, in the abstract, will show us how to eliminate it” (Babbitt 1996, 90). Beyond this, as Mills points out, ideal theory assumes the legitimacy of problematic social institutions (like the traditional family and economic schemas), idealized cognitive and social ontologies (such as those that hold the “reasonable man standard”), and simply ignores or disregards issues like the social location of the knower and their vested interests in maintaining certain power structures, all of which are deeply connected to privilege (Mills 2005). So, it is not simply the case that we should turn to nonideal theory to make political philosophy more relevant, but also because we must do so if we are to use political philosophy to identify and resist oppression. We can apply this same reasoning to justify the move to nonideal approaches to immigration justice. As is the case with political philosophy more generally, there is a deep frustration with the fact that philosophical discussions of immigration have had little to no influence on real life immigration debates because they are disconnected from immigration realities on the ground and, consequently, they miss core issues in immigration justice and injustice, especially the prevalence of oppression in the daily life of migrants and in U.S. immigration policy. While Mexican and Central American migrants face systemic violence from gangs and police as they travel to the U.S, for example,4 most philosophers of immigration justice ask whether states should have open or closed borders, whether immigrants have a right to leave their home nations, enter others, and/or stay in territories that they have entered, or whether states have the right to exclude them from entry (Carens 1987, 2014; Walzer 1982; Wilcox 2009; Fine 2013; Ypi 2008; Oberman 2011; Miller 2016). While immigrants face exploitation in employment, police harassment, and daily humiliations (like being presumed to be a criminal), traditional philosophers of immigration are employing ideal methodology investigate whether immigrants are entitled to the same rights and benefits as citizens. The problem is that establishing a universal right to migrate neither provides guidance for prioritizing who is granted entry when all cannot be accommodated (for example in the current refugee crises), nor does it suggest how to address the systematic violence migrants face as they cross the border. Beyond this, even if a right to freedom of movement exists, this says nothing about issues arising once the migrant resides in a new nation’s territory. Discussions of immigration justice based on ideal political thought and ethics 4  What should constitute “adequate screening”? What is a just fee schedule for visa applicants? What is the appropriate number of visas that should be available to Mexicans and Central Americans?

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misses the point; they misidentify what constitutes immigration justice and injustice, focus on issues that do not matter to most migrants in their daily lives, and fail to offer practical insights into how to improve things. We need a new approach. Many, including myself, believe that moving to nonideal theory is a big part of what must be done, especially if we want political philosophy, and the immigration justice literature in particular, to help tackle oppression. As Mills points out, nonideal theory is better able to realize the ideals that Rawls and others are developing “by virtue of realistically recognizing the obstacles to their acceptance and implementation” (Mills 2005, 181). Since nonideal theory recognizes these obstacles, it is better able to design strategies that can overcome them. Similarly, argues Mills, “recognizing how people’s social location may both blind them to important realities and give them a vested interest in maintaining things as they are is a crucial first step toward changing the social order” (Mills 2005, 181). So, the best way to bring about a better world is to recognize where and how it is falling short (Mills 2005, 181). I think this is true both in immigration justice generally and related to specific injustices migrants face in obtaining access to health care in U.S. detention centers. When we move to nonideal theory in this context, we will both be better able to recognize and address oppression in immigrant health care while simultaneously making philosophy more relevant to activists (Reed-Sandoval 2016 27). This is especially apparent in Shelley Wilcox’s nonideal approach to immigration justice. I will now turn to explain her work and then demonstrate why it offers such a promising model for bioethicists. In “Immigrant admission and global relations of harm,” Wilcox takes on the task of providing a nonideal approach to admissions policies that goes beyond abstract debates on whether states should or should not have open or closed borders and, instead, helps determine how states can justifiably decide which immigrants to prioritize in a reality where a nation simply cannot admit all who seek entry. For Wilcox, theoretical debates about open borders offer no practical guidance about how to handle admissions. This misses that prioritization is the real issue most nations face; most nations do not seek completely open or closed borders but rather, regulated ones. How should they choose amongst those who want to gain admission? To address this kind of question, Wilcox proposes a Global Harm Principle (GHP). Specifically, GHP states: “societies should not harm foreigners; and societies that violate this duty must: (1) stop harming these foreigners immediately; and (2) compensate their victims for the harm they have already caused them” (Wilcox 2007, 277). In this context, Wilcox defines harm as “an infringement of human rights” (Wilcox 2007, 279). Consequently, the principle requires societies to “refrain from imposing human rights deficits upon foreigners” (Wilcox 2007, 279). In cases where GHP is violated, Wilcox says that the members of the society and their governments are collectively responsible and, as such, are collectively accountable to remedy that deficit, regardless of whether they themselves played an active role in producing it (Wilcox 2007, 281). This is because, in such cases: accountability derives from the relationship between citizens and their elected representatives, specifically from the process by which citizens authorize their elected officials to represent them. By investing their government with the power to act in their name, citizens

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assume collective accountability for the consequences of its conduct and policies. Thus, while citizens may not themselves be morally culpable for wrongs done by their government, each citizen is responsible for doing her part to remedy the wrongful harm that her government causes. (Wilcox 2007, 281)

Returning to the specific case of immigration admission policies, GHP says that any nation that is causing human rights deficits must immediately cease. In many cases, though, this will not be enough to compensate for the harms caused, especially if those harms were caused by war or other foreign interventions. While the ideal compensation would return the person to the status before the violation, sometimes the best response will be to offer admission to those harmed by the nation’s policies. In other words, sometimes the best remedy to escape human rights deficits caused by the accountable society is to grant the wronged persons permission to immigrate to that nation, should the wronged person deserve it (Wilcox 2007, 287). Wilcox continues, “immigrant admissions will also be mandatory if resettlement is the only means by which to fulfill the duty to compensate for past human rights deficits” (Wilcox 2007, 287). So, GHP will argue that those who have been harmed by the receiving society should receive priority in admissions when a state cannot admit all who seek to enter.

15.4  A Wilcoxian Bioethical Case Study Analysis Despite the fact that Wilcox is writing in a specific context of prioritizing in immigration admissions criteria, I think her nonideal approach to immigration can be adapted in helpful ways to the bioethics framework. First, Wilcox’s GHP is in line with core concepts of bioethics, specifically the aim of protecting patients from harm. Second, Wilcox’s GHP is not about achieving an ideal state but rather rectifying specific harms as best we can. We do not have to achieve perfection or an ideal health care system, but we have to try to alleviate people’s suffering (especially that which we cause) as much as we are able. This provides a more realistic approach for bioethicists. Third, despite offering a principle, Wilcox is really focused on remedying specific, identifiable harms to people, not violations of principles per se. At the same time, she recognizes that harm can be committed by individuals, nation-states, and governmental institutions. This leads to the final advantage for bioethics, namely that the GHP allows us to identify and try to address specific wrongs immigrants endure in U.S. detention centers caused by individuals as well as U.S. governmental institutions, like ICE and Border Patrol. This means that bioethicists can focus on structural and historical issues that led to the situation under review, which will, in turn, allow for bioethicists to better understand the specific harms in question and offer more practical advice. To defend these claims more concretely, I will return to the specific issue of migrant detention and assess it using Wilcox’s GHP. Recall, that the GHP states, “societies should not harm foreigners; and societies that violate this duty must: (1) stop harming these foreigners immediately; and (2) compensate their victims for the

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harm they have already caused them” (Wilcox 2007, 277). Societies harm foreigners when they infringe on their human rights and impose human rights deficits on foreigners (Wilcox 2007, 279). When we apply this to the current context, it becomes clear that the U.S. government and its agencies are harming migrant detainees, must stop doing so, and must compensate them (and in cases where the migrants have died, their families).

15.4.1  H  arm 1: U.S. Government Infringement on Migrant’s Right to Health Care The first place we can identify harms to migrants is the fact that the United States government, specifically in its immigrant processing and detention centers, infringe on the migrants’ right to health care as established in numerous international treaties to which the U.S. is a signatory and which is established by U.S. government policy. This is the case for both those who cross the border without authorization and for asylum seekers, like, Jakelin Caal and Felipe Gomez’s parents, Raul Morales, Roxsana Hernández, Moises Tino-Lopez, Raquel Calderon, and Carlos Hernandez. The Inter-American Council on Human Rights of the Organization of American States (of which the United States is a part), for example, states that: In border areas, it is the duty of state authorities to provide immediate assistance to migrants and asylum-seekers, and that this assistance must specifically include medical assistance, adequate food and water, clothing, blankets, personal hygiene supplies, and opportunity to rest. As part of operations to intercept migrants and control migration at international borders, it is the duty of state authorities to prioritize medical and health screenings for migrants and asylum-seekers. This implies that competent medical personnel must be present in places where migrants and asylum-seekers are intercepted or detained in order to examine them and refer them for further medical attention, including mental health referrals, when appropriate. (Organization of American States 2019)

Similarly, the United Nations establishes that immigrants  – refugees, asylum seekers, or otherwise – have a right to health care. Article 12 of the International Covenant on Economic, Social and Cultural Rights, for example, maintains that: States that are a party to the Covenant have an obligation to ensure the provision of: equal and timely access to basic preventive, curative, rehabilitative health services and health education; regular screening programmes; appropriate treatment of prevalent diseases, illnesses, injuries and disabilities, preferably at community level; essential drugs; and appropriate mental health treatment and care. They also have an obligation to prevent, treat and control epidemic, endemic, occupational and other diseases. Under article 12.2(d), they must create “conditions which would assure to all medical service and medical attention in the event of sickness,” (The Office of the High Commissioner of the United Nations 2019).

The United States government recognizes its obligations to provide health care to detained immigrants, as evidenced by the fact that ICE maintains the ICE Health Service Corps (IHSC) to provide “direct care to approximately 13,500 detainees housed at 21 designated facilities throughout the Nation to include medical, dental

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and mental health care, and public health services as well as medical case management and oversight for an additional 15,000 detainees housed at approximately 119 non-IHSC staffed detention facilities across the country.” IHSC oversees the financial authorization and payment for off-site specialty and emergency care services for detainees in ICE custody (US Immigration and Customs Enforcement 2019). Despite this, the U.S. government and its institutions are infringing on these rights and imposing deficits on migrants in U.S. custody by providing woefully inadequate medical care and failing to monitor and maintain conditions of their facilities (or those with whom they contract). First, ICE’s own numbers show that they are equipped to provide care to 28,000 detainees but there are twice as many people in the system. Second, according to a report published by four major human rights organizations, “three failings stand out: (1) unreasonable delays in providing care, (2) poor practitioner and nursing care, and (3) botched emergency responses” (Human Rights Watch et al. 2018). Third, U.S. government reports in 2016, 2017, and 2018 provide additional documentation of deficient medical care in ICE facilities (Office of Inspector General 2016; Human Rights Watch 2018; Seville et al. 2019). Worse, there seems to be no desire to remedy this as Customs and Border Patrol recently announced that “due to the short term nature of CBP holding and the complexities of operating vaccination programs, neither CBP nor its medical contractors administer vaccinations to those in our custody” (Weixel 2019). So, despite the fact that three children have died in custody from the flu, the U.S. government will do nothing about it. Unsurprisingly, then, the American Civil Liberties Union reports: “ICE puts thousands of people’s health and lives at risk by failing to provide adequate medical care to the people it detains for weeks, months, and even years” (Human Rights Watch 2018). Furthermore, when they do get care, it is low quality, responses are delayed or inadequate, and emergency responses are botched and slow. All of the above are evident in the cases that began our discussion. Raquel Calderon de Hildago was injured when she turned herself into Border Patrol and then never received care. Roxsana Hernández had to endure freezing conditions that diminished her immune response and then had to wait for care for over a week, and Moises Tino-Lopez waited nine days, with both dying as a result of the delay. The six children that died in the last six months all arrived or became ill under U.S. custody only to receive care when it was too late. Of course, Raul Morales was forced to wait over two years for treatment that never came. It is clear from these cases and the data that migrants are receiving inadequate or delayed care. Worse, this is likely to continue as: The Trump administration has requested less money for Department of Homeland Security (DHS) oversight of detention to assure that conditions of confinement are safe, indicating that it plans to abandon basic standards developed over the past decade intended to protect the health, safety, and human rights of those held in immigration detention centers. These proposals would place more human beings than ever before into an abusive and wasteful system that already suffers from substandard medical care (Human Rights Watch et al. 2018).

All of this suggests that the U.S. government is harming migrant detainees with substandard health care.

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15.4.2  Harm 2: Lack of Oversight over Detention Facilities This leads directly to the second way that the United States is harming detained migrants, namely through lack of oversight and unsanitary or ill-equipped facilities that led to human rights violations. For example, the Border Patrol processing facility where Carlos Hernández Vásquez was held was reportedly in the midst of a flu outbreak but continued to detain migrants there (Lind 2019). After his death, the government announced that it is no longer sending migrants there, but that raises the question of why the conditions were able to persists there in the first place. The standard practice is for Border Patrol to only hold unaccompanied minors, like Carlos Hernández, Vásquez for 72 hours before transferring them to Immigration and Customs Enforcement Custody or the Office of Refugee Resettlement; this is not happening. As Vox reports, “In recent weeks, pictures of children being held outside—having to sleep on the ground—have raised alarms, as temperatures climb into summer” (Lind 2019). So, children are dying in CBP custody because they are there for longer periods of time in conditions that are not set up to care for them adequately (Lind 2019). Policies like the once referenced earlier that refuse to vaccinate children from the flu are justified on the grounds that the children are only in custody for 3 days. But the 3 day rule is not being followed even as policies are being made to withhold medical care are justified  based on the fact that the rule exists. As a result, the problem is exacerbated, which will then lead to more sickness and death of children in U.S. facilities that could have been prevented if the U.S. government had proper oversight and health care for migrants. What is happening at the McAllen processing center, Eloy Detention Center, and so many others, reflect a larger issue of failure of government oversight more generally. The Enforcement and Removal Office (the agency in charge of inspecting facilities) does not impose meaningful consequences for failing inspection standards (National Immigrant Justice Center 2016). This led the National Immigration Justice Center to conclude that “inhumane conditions, including egregious violations of medical care standards, prevail across an immigration detention system composed of more than 200 detention facilities” (National Immigrant Justice Center 2016). This lack of oversight supports the culpability of the U.S. government in allowing migrants to be harmed; they have such poor health care access that they are dying in U.S. custody. For those who are not, they, like Raul Morales, are suffering. The only logical conclusion is that the U.S. must stop these harms and compensate the victims.

15.4.3  H  arm 3: U.S. Has Contributed to Why They Must Flee in the First Place There is a third reason that the U.S. has harmed these migrants – they contributed in significant ways to other human rights abuses and harms that led the migrants to flee in the first place. Beyond this, U.S. actions and immigration policy puts migrants at

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risk for injury and disease on their journey to the U.S. In other words, when we investigate how these harms came to be, we see that the U.S. plays a prominent role for why immigrants are coming in the first place and why their trek is dangerous such that they arrive injured or ill. Consequently, they are indirectly harming migrants even before they arrive on U.S. soil. I will elaborate on each of these points. 15.4.3.1  U  nited States as Directly Responsible for Creating Conditions that Migrants Flee I will begin with the first claim that the policies of the United States government are directly connected to why migrants are fleeing.5 This is because we are still feeling unintended consequences of U.S. intervention in Central America that were part of the  U.S.  Cold War efforts. Many are familiar with the Reagan Administration’s Contra War in Nicaragua where we fought against the Sandinista Revolution. Reagan claimed that the Sandinistas were Communists, and as such, were a threat to their neighbors and the United States (Foster 2000; Turner 1987). Reagan, then, saw their reign as a call for the United States to curb the “red revolution” by creating an army (the Contras) to fight them (Foster 2000; Turner 1987). These efforts continued until 1992, when the Sandinistas lost power in national elections. The flight of Nicaraguans from the violence, economic destruction, and political instability that took hold in the early 1980s continues today with migration flows to both the United States and Costa Rica continuing at high levels. Still, U.S. Cold War efforts to destabilize the region were not limited to Nicaragua. The Central Intelligence Agency and other U.S. government agencies and officials are now widely known to have supported brutal and violent administrations and dictatorships in both Guatemala and El Salvador. The U.S., for example, trained and supported right wing forces in El Salvador that tortured, raped, and murdered thousands who resisted the government, including six Jesuit priests in 1989 (Lakhani 2016; Borger 2018). More broadly, the U.S. trained and funded right-wing death squads in the name of preventing communism from taking hold in the hemisphere (Borger 2018). The U.S. employed a similar strategy even earlier in Guatemala, when in 1954,6 they staged a coup to overthrow Jacobo Árbenz, whose proposed land reforms were interpreted by the U.S. as both threats to U.S. business interests (specifically of the United Fruit Company) and the first signs of communism taking hold in Central America. This interference began a civil war that officially lasted until 1996, where 5  This is not to say that the U.S. policies are entirely responsible here – there are many factors at play. Rather, it is to say that it is clear that U.S. foreign policy along with immigration policy (especially deportation policies) starting in the 1980s and 1990s play a large role in the refugee crisis and large exodus from the Northern Triangle. 6  Of course, much before that the United States was intervening in Guatemala, Nicaragua, and Panama in order to create the Panama Canal and expand U.S. business interests, for example for United Fruit Company.

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the U.S. “backed the Guatemalan military, which was responsible for genocide against the native population” (Borger 2018). It is now well-established that the Guatemalan military conducted a genocide campaign where over two hundred thousand, primarily Mayan, people were killed or disappeared. According to the New Yorker, “a report commissioned by the United Nations described instances of soldiers beating children “against walls or throwing them alive into pits,” covering people ‘in petrol and burning them alive’” (Borger 2018). Despite these atrocities, the United States supported Guatemala’s military and victims were interpreted as communist sympathizers who threatened national security and, consequently, if they fled to the U.S., very few received asylum. Finally, and more recently, the U.S. backed the ousting of Honduran President Zelaya in 2011 because Zelaya was trying to resolve land conflicts between agrobusiness and local farmers. After his ousting, the conflict became increasingly militarized and over a hundred campesino farmers were murdered, something that has only worsened under President Juan Orlando Hernández. Rather than condemning this violence, the U.S has supported Orlando Hernández’s tactics. In fact, after Orlando Hernández unleashed violence on the opposition in order to win re-­election, President Trump congratulated him on his victory (Borger 2018). Given that Trump claims to want to see an end to Honduran citizens fleeing to the U.S., one would think he would have condemned the violence. To the contrary, he cut off aid to the country and is slow-walking a plan to help Central America because he claims they are not doing enough to stop immigration to the United States. Again, then, some of the harms faced by migrants leading them to come to the U.S. are partially caused by the U.S. government, and the citizens that elected them to power. 15.4.3.2  U  nited States as Indirectly Responsible for Creating Conditions that Migrants Flee U.S. policies and involvement in Central America also contributed to why migrants are fleeing in more indirect ways. Sociologist, Patrisia Macías-Rojas also traces this back to the 1980s and 1990s, but she does not locate this in U.S. Cold War efforts abroad, but rather in the effects of changes in immigration law and enforcement policy within the United States. For example, in 1986, the Immigration Reform and Control Act introduced a criminal alien program designed to deport convicted felons (Macías-Rojas 2016, 59). According to U.S.  Immigration and Customs Enforcement, the Criminal Alien Program (CAP) “provides ICE-wide direction and support in the biometric and biographic identification, arrest, and removal of priority aliens who are incarcerated within federal, state, and local prisons and jails, as well as at-large criminal aliens that have circumvented identification” (US Customs and Immigration Enforcement 2019). Originally, the program was created to deport those undocumented immigrants who had committed serious and violent crimes, which includes gang members (Cantor et  al. 2015). However, in 1996, when the Illegal Immigration Reform and Immigrant Responsibility Act (IIRICA) was passed, it expanded the list of aggravated felonies for which one could be deported

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to include petty theft, minor drug offences, and DUIs and also required mandatory detention of noncitizens who had completed their prison sentences (Cantor et al. 2015, 61 and 63). As anthropologist Thomas Ward explains, MS-13 was not always a violence problem. Initially, it was mostly composed of teenage immigrants who listened to bad music and got high. “According to Ward, the group took a more malevolent turn when members in the LA County jail began adopting street gang subculture. It wasn’t until the mid-1990s that the group became MS-13 and related gangs, as members began negotiating with the Mexican mafia for protection in jails and prisons from other Latino gangs” (Lajka 2019). Yet, with the list of deportable crimes growing, U.S. deportations increased and many MS-13 gang members were deported to El Salvador. In fact, “Between 1998 and 2014, the U.S. deported over 81,000 migrants back to El Salvador” (Lajka 2019). The problem was that El Salvador was still trying to recover from the previously mentioned civil war and did not have the infrastructure or tools to deal with either repatriated citizens or gangs. Moreover, nobody wanted to hire these deported gang members (Pierce 2018). This opened the door for gangs to gain a stronger presence. Over time, “MS-13 grew more strategic and powerful, placing members in the police and military, even at the university where they studied law and accounting” (Linthicum 2017). In response, the Salvadoran government tried a massive crackdown known as the “iron fist policy,” starting around 2003, which has meant: sending soldiers armed with automatic weapons and dressed in black balaclavas into gang-­ controlled areas. Recently, federal prosecutors have accused law enforcement officials of going too far—of “disappearing” young men—and residents of some neighborhoods have complained of extrajudicial killings. (Linthicum 2017)

The gangs have responded, according to Ward, “by becoming more organized and more rebellious, it created this cycle of violence that has perpetuated until some kind of new policy is instituted where they are not demonized” (Lajka 2019). Despite all of this, there are “an estimated 10,000 active MS-13 gang members in local cliques in the U.S. and 50,000 across Central America” (Lajka 2019). The Salvadoran government has estimated that nearly half a million people are now connected to the gangs—in a country of slightly more than 6 million (Linthicum 2017). So, Salvadorans are fleeing in massive numbers to the United States and Costa Rica to such an extent that the United Nations has called this a refugee crisis for the region (Reuters News Service 2016). In response, the Trump Administration announced an end to temporary protected status for Salvadoran migrants and threatened to cut off aid to the country. All of this history suggests that U.S. policies have a prominent role in harming those who have fled even before they arrived in the U.S. It also shows that Cold War policies continue to influence who can and cannot come to the U.S. or receive visas, which indicates that U.S. policies have harmed migrants by forcing them to come without authorization. This combination of actions over decades mean that, at the very least, the U.S. is complicit in human rights abuses and infringements of Central American peoples in their home nations as well as in the U.S. It is at least plausible on Wilcox’s account, then, that the U.S. must stop intervening and supporting

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policies that lead migrants to flee and, since they have not done so, owe these migrants compensation for these human rights violations.7 U.S. policies and practices are also complicit in making the journey to the United States so dangerous for migrants that they often arrive sick, injured, and traumatized (and thus require health care while in U.S. custody). First, in mid-1994, the U.S. Border Patrol proposed and implemented a new strategy for border enforcement, known as “prevention through deterrence.” In essence, this policy increases the number of Border Patrol officers, technology, and barriers throughout the Southwest such that “illegal traffic will be deterred, or forced over more hostile terrain, less suited for crossing and more suited or enforcement” (United States Border Patrol 1994, 7). Because the journey will be so much more dangerous and checkpoints will be enforced more, the Border Patrol reasoned that the number of those attempting “illegal entry” would decrease (United States Border Patrol 1994). In other words, the Border Patrol knowingly decided to increase “costs” to migrants; thus, they were fully cognizant of the connection between their actions and the increased dangers of the journey to migrants. As a result, people like Raquel Calderon de Hildago became injured en route to the United States and enter custody with poor health. We can also see a strong U.S. role in creating dangers to Central American migrants via the Southern Border Plan. Until recently, Central American migrants like Hernández, Tino-López, and  Calderon, would pass through Mexico without incident from the Mexican border authorities; they were not interested in Central American migrants who were only passing through to the U.S.  However, this changed in July 2014, when Mexico announced its U.S.-backed and supported “Southern-border plan” (Programa Frontera Sur) (Matalon 2017, 7). The plan requires Mexico to do more to detain Central American migrants before they reach the U.S.  Southern Border. Therefore, the United States and Mexico have trained border patrol forces and placed them in 12 points of entry throughout Southern Mexico to check people’s documents, detain them, and deport them back to Central America (Council on Hemispheric Affairs 2016). They have also established what they call “three bands of security” throughout the Mexican state of Chiapas, where Mexico has sent at least 300 border patrol agents from other parts of Mexico to the country’s south, has begun raiding trains and hostels for migrants, and established check points throughout the country (Matalon 2017). Beyond this, according to Enrique Vidal Olascoaga an analyst for Voces Mesoamericanos, “There is a significant increase in technology that is arriving to the southern border of Mexico [from] the United States,” including biometric identification machines, vehicles and drones, and additional training to help Mexican police and military detect migrants (Abbott 2017). The United States has promised at least $100 million to help sustain the program (Matalon 2017).

7  I would argue they could owe health care that is more robust to these migrants once they are admitted to the U.S. too on this framework, but this is beyond the scope of this essay.

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Many have noted large numbers of human rights abuses by Mexican immigration authorities (Stillman 2016). Researcher Vicki Fox of the University of London, reports that nine out of 10 Central American migrants in Ixtepec “had been the victim of a serious crime in Southern Mexico, ranging from armed robbery and assault to gang rape and attempted murder” (Nazish 2016). Moreover, she and others report high numbers of extortion from Mexican authorities. All of this is made even worse for trans women and men. An Amnesty International Report finds that LBGTQ individuals face violence in Mexico, including at the hands of Mexican officials. Many report that “they didn’t feel safe in the country as many of the criminal gangs who threatened them back home operate across the southern Mexican border” (Amnesty International 2017). The United Nations Refugee Agency notes that Mexico is “a real challenge for LGBT asylum seekers,” because of a lack of services and their vulnerability to abuse (Stillman 2016). The United Nations High Commissioner for Refugees said that “two thirds of the LBGTI refugees from Central America they spoke to in 2016 and 2017 had suffered sexual and gender-based violence in Mexico” (Amnesty International 2017). Given deep U.S. involvement in this program, there is ample evidence to suggest that it is, at least partially, responsible for the treacherous conditions migrants face in their travels to the United States such that they are injured or sick, sometimes fatally, even when they are not in U.S. custody. Consequently, the U.S. is effectively creating the health care needs that they later are refusing to treat or are inadequately addressing. More generally, the increased enforcement of the Southern Border has led to various consequences that place migrants in danger. One such example is the costs of smugglers. As Elizabeth Oglesby reports, “Where it used to cost around $1,000 to make the journey from Central America, it now costs up to $12,000, making shuttle migration impossible. … The only way for families to stay together is for women and children to migrate” (Borger 2018). Increased enforcement has made it that families must migrate without help, which puts them at higher risk of injury and disease. Children like Jakelin Caal Maquin, Felipe Alonzo-Gomez, Carlos Hernandez Vasquez, and the other children who died in custody have been harmed because of U.S. enforcement policy. Again, this both constitutes harm and demands a response. Now, it may seem that we have deviated from our original topic of why bioethicists have been absent from discussions on migrant health care, but this is not the case. Recall that I am suggesting that bioethicists have been disengaged from discussions of immigrant deaths for two main reasons: (1) they see the topic as going beyond the scope of the field of bioethics or beyond the expertise of bioethicists, and/or (2) the traditional tools of bioethics provided by ideal ethical theory are inadequate to the task. As a result, even those who do want to get involved are ill-­ equipped to effectively do so. The extended discussion of U.S. involvement in creating the health care problems immigrants face and the dreadful conditions in detention centers speaks to both points. Appealing to the nonideal immigration justice literature, specifically Shelly Wilcox’s GHP offers a more useful approach to bioethicists in this context. Once we delve into how the United States has violated that principle, we can see that issues of immigrant deaths and health care lie squarely

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in the scope of bioethics, even traditionally understood as protecting patients from the abuses of systems and individuals in power. Beyond this, this analysis demonstrates the ways in which the United States, indeed, has violated the Global Harm Principle in at least the following ways. First, by failing to provide health care services or by providing inadequate care, it has harmed migrants by infringing on their internationally protected rights to receive health care (let alone being left to die as they request asylum or await immigration hearings). Second, the U.S. is harming migrants by being delinquent in its oversight obligations of these facilities. Third, the U.S. has harmed these migrants by playing a direct and indirect role in creating the conditions that led them to have to flee in the first place. Fourth, U.S. immigration policy is largely responsible for the dangerous conditions that migrants endure in their journey to the United States, conditions that often lead to the very health problems we are unwilling to treat. Given the above, the Global Harm Principle mandates that the U.S. immediately cease this behavior or, since that is unlikely, compensate the victims and their families. I suggest, at minimum, this means that the U.S. is morally obligated to provide some level of health care to migrants crossing our borders from Mexico and Central America. I am not delusional–the U.S. will clearly not magically change its ways. But, recall that in the nonideal context of immigration justice, we do not need to achieve some abstract ideal; we only need to do the best we can to remedy harms that we see. That gives bioethicists an entre into the discussion – they can use the GHP to identify harms to migrants. Then, they can, and I argue should, advocate for programs that help ease those harms. Some ideas could be to campaign for increased funding to the ICE Health Service Corps, support or create more projects like Nancy Berlinger and the Hastings Center to educate physicians and bioethicists about immigrant health concerns, (The Hastings Center 2017) show that the U.S. must pay medical bills for the illnesses caused to detained migrants, and/or to granting admission to those made sick by our actions, or join with immigrants’ rights organizations to recruit health care providers or fund migrant health clinics. The larger point is not the specific solution, however, as much as to establish that Wilcox’s nonideal theory of immigration justice, namely one based on GHP, can provide a tool that makes it possible for bioethicists to become part of these conversations in a meaningful way.

15.5  Where Bioethicists Should be Sally Satel said that when bioethicists take public stands on issues it “damage[s] their credibility” (Satel 2010) because they are speaking beyond their expertise. I could not disagree more. In fact, I submit that there is nothing so clearly within the expertise of bioethicists then to fight for everyone, including and especially vulnerable migrants, to receive adequate health care once they set foot on our soil. Raul Morales, Moises Tino-López, Roxsana Hernández, Raquel Calderon, and the

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dozens like them have wrongly died at the hands of our government, their only crime being their desire for a better life – a life free of sexual violence, gang violence, starving wages, and constant uncertainty. Iker Gael Cordova Herrera, Jakelin Caal Maquin, Carlos Hernández Vásquez, and Felipe Alonzo-Gomez were simply with their parents. Instead of helping them or even treating them with even minimal decency, the U.S. government detained them in such a cruel and inhumane manner that they passed from this world. This is clearly wrong, and I would argue, the fact that we cannot let this stand is not very controversial. Still, I can see why people like Satel disagree. If we define bioethics as a field that is trying to achieve some sort of moral ideal within the space of medicine and health care, Satel’s position makes sense. How, after all, could we ever claim expertise to know what is the correct moral path forward in a perfect world? For those who take a different understanding of the nature and scope of bioethics, though, this position has little to offer. So, what should they do? Should they apply the principle of autonomy, for example, and highlight all the ways it has been violated in the cases of migrants who have died in U.S. custody? That does not seem to help because, at best, doing so seems futile in the face of such blatant abuse and neglect and thoroughly clueless, at worst, given that autonomy violations are not really the core issue migrants are raising. The principle of justice does not seem to be of much help either since it both presumes a closed system and pits the health care needs of dying migrants against those of citizens. Luckily, we have other tools at our disposal, including Shelly Wilcox’s nonideal approach to immigration justice. Her Global Harm Principle shows bioethicists why this issue is squarely within the scope of bioethics, why the treatment of these migrants is so egregiously wrong, and why the U.S. must act to change it. It provides bioethicists with a methodology to identify actual harms being committed against migrants, various parties responsible for those harms, and a framework for working toward remedies. It does not ask for perfection or complete resolution; it aims at correcting injustice perpetrated against migrants caused, in this case, by the U.S. by demanding that we get to work to (1) stop the actions and (2) compensate those who have suffered. In other words, GHP directs us to identify harms causing vulnerable patient populations to suffer, to try to help those who have suffered, and then begin to alleviate that suffering. Nothing could be more in the realm of bioethics. It is time we started acting like it.

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Macías-Rojas, Patrisia. 2016. From deportation to prison: The politics of immigration enforcement in post-civil rights America. New York: New York University Press. Matalon, Lorne. 2017. Programa frontera sur: Tracking U.S influence on Mexico’s southern border plan. May 28, 2017. http://lornematalon.com/2017/05/28/ programa-­frontera-­sur-­tracking-­u-­s-­influence-­on-­mexicos-­southern-­border-­plan/ Miller, David. 2016. Strangers in our midst: The political philosophy of immigration. Cambridge, MA/ London, England: Harvard University Press. Mills, Charles. 2005. ‘Ideal theory’ as ideology. Hypatia 20 (3): 165–184. Montoya-Galvez, Camilo. 2018. Migrant child dies in border patrol custody: Second in a month. CBS News, October 2. National Immigrant Justice Center. 2016. ICE’s failed monitoring of immigration detention contracts. September 2016. Nazish, Kiran. 2016. Treatment of immigrants in Mexico much worse than any other country. USA Today, June 15. Oberman, Kieran. 2011. Immigration, global poverty, and the right to stay. Political Studies 59 (2): 253–268. Office of the Inspector General of the United States. 2016. DHS and OIG to periodically inspect CBO and ICE detention facilities. https://www.oig.dhs.gov/assets/pr/2016/oigpr-­031516b.pdf Organization of American States. 2019. IACHR expresses deep concern over the deaths of two migrant children in the custody of immigration authorities in the United States. http://www. oas.org/en/iachr/media_center/PReleases/2019/001.asp. Pierce, Charles P. 2018. We bear responsibility for conditions in Honduras causing people to flee. Esquire, November 25. Redlener, Irwin. 2019. A 16-year-old boy died in CBP custody. Blame immigration policy. Washington Post, May 23. Reed-Sandoval, Amy. 2016. The new open borders debate. In The ethics and politics of immigration: Core issues and emerging trends, ed. Alex Sanger. New York: Rowman & Littlefield. Reuters News Service. 2016. Refugee crisis: Costa Rica gets 100-plus migrants a day. Sydney Morning Herald, September 24. Rothman, David J. 1992. Strangers at the bedside: A history of how law and bioethics transformed medical decision making. New York: Basic Books. Satel, Sally. 2010. The limits of bioethics. Policy Review Hoover Institute of Stanford University. Sawyer, Ariana. 2019. Another needless death in US Immigration detention. Human Rights Watch. https://www.hrw.org/news/2019/07/26/another-­needless-­death-­us-­immigration-­detention. Seville, Lisa Riordan, Hanna Rappleye, and Andrew W. Lehren. 2019. 22 immigrants dies in ICE detention centers during past 2 years. NBC News, June 6. Stillman, Amy. 2016. Migrating to the US is already risky: Try being a transgender migrant. Public Radio International, February 17. The Hastings Center. 2017. Undocumented immigrants and health care access in the United States. http://undocumentedpatients.org/. The Office of the High Commissioner of the United Nations. 2019, International Covenant on Economic, Social and Cultural Rights. United Nations, Treaty Series, available at: https:// www.ohchr.org/en/professionalinterest/pages/cescr.aspx Turner, Robert. 1987. Nicaragua v. United States: A look at the facts. Washington: Special Report 1987 for the Institute for Foreign Policy Analysis. United States Border Patrol. 1994. Border patrol strategic plan 1994 and beyond. US Immigration, and Customs Enforcement. 2019. ICE health services corp. https://www.ice.gov/ ice-­health-­service-­corps. Valentini, Laura. 2012. Ideal vs. non-ideal theory: A conceptual map. Philosophy Compass 7 (9): 654–664. Van Sant, Shannan. 2019. Teenager is latest migrant child to die in U.S. custody. National Public Radio, May 20. Walzer, Michael. 1982. Spheres of Justice. New York: Basic Books.

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Weixel, Nathaniel. 2019. Migrants in US border detention centers won’t receive flu vaccine. The Hill, August 20. Wilcox, Shelley. 2007. Immigrant admissions and global relations of harms. Journal of Social Philosophy 38 (2): 274–291. ———. 2009. The open borders debate on immigration. Philosophy Compass 4 (5): 813–821. Wolf, Allison B. 2019. Dying in detention: An issue of oppression. American Philosophical Association Newsletter Hispanic/Latino Issues in Philosophy 19 (1): 2–8. Young, Iris Marion. 1990. Justice and the politics of differen-ce. Princeton: Princeton University Press. Ypi, Lea. 2008. Justice in migration: A closed Borders utopia? The Journal of Political Philosophy. 16 (4): 391–418.

Chapter 16

Medical Deportation, Non-Citizen Patients Leonard Kahn

16.1  Medical Deportation Almost 20 years ago, Luis Alberto Jiménez was living in Florida when he was hit by a drunk driver and suffered serious injuries. Luis was rushed to Martin Memorial, a community hospital. Although Luis was both uninsured and in the U.S. without legal documentation, U.S. hospitals are legally required in an emergency to treat any patient until he or she is stabilized. Neither Luis’s ability to pay nor his immigration status relieved Martin Memorial of this obligation, and the staff at Martin Memorial both saved Luis’s life and stabilized his condition. However, Luis sustained a severe traumatic brain injury from which he has never recovered. Rehabilitation centers are not legally required to accept patients, and the hospital was unable to find an institution that was willing to accept Luis. As a result, Martin Memorial kept him as a ward for several years at what it claims to have been a cost of $1.5 million. Up to this point, Luis’s story was tragic, though in a manner common to cases of significant automotive accidents. It is here that his story takes an unusual turn. In 2003, Luis was deported by Martin Memorial itself. The hospital won a state court order to do so, though this would later be declared to be invalid. Martin Memorial leased an air ambulance (at the cost of approximately $30,000) and, in the words of a hospital administrator at Martin Memorial “forcibly returned [Mr. Jiménez] to his home country,” Guatemala. Between 2003 and 2008, Luis received no medical attention at all, and the limited care he received was from his elderly mother, Petrona Gervacio Gaspar. Beginning in 2007, Luis began to suffer from “routine violent seizures, each characterized by a fall, protracted convulsions, a loud gurgling, the vomiting of blood and, finally, a collapse into unconsciousness.” According to Petrona, every time Luis has a seizure L. Kahn (*) Department of Philosophy, Loyola University New Orleans, New Orleans, LA, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 E. Victor, L. K. Guidry-Grimes (eds.), Applying Nonideal Theory to Bioethics, Philosophy and Medicine 139, https://doi.org/10.1007/978-3-030-72503-7_16

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“he loses a little more of himself” (Sontag 2008). I have been unable to determine what became of Luis in the last 11 years, but his prospects appeared bleak. Luis’s story is not unique – far from it. Consider Quelino Ojeda Jimenez. Quelino came to the Chicago area in order to help support his large family, including his parents and his 6 sisters. Like Luis, Quelino was in the U.S. without documentation or insurance. Quelino suffered a terrible injury at work and became a parapelgic and needed a ventilator to breathe. Advocate Christ Medical Center in Oak Lawn, Illinois cared for him until late December 2010. At that point, it returned Quelino to Oaxaca, Mexico, where he cycled quickly through a number of hospitals, ending up in one that was too small to take proper care of him. There Quelino underwent cardiac arrest twice while also developing bedsores and a septic infection. Though Quelino was briefly transferred to a larger hospital in Mexico, he died a month later, only 21 years old (Schlikerman 2012). What Luis and Quelino underwent is now known as “medical deportation” or “medical repatriation,” the practice of removing undocumented migrants, despite their illhealth and/or injury, and returning the migrant back to their country of origin. Medical deportation is generally undertaken by private parties, as was the case with Mr. Jiménez. In the rest of this section, I make the case that medical deportation should be taken seriously both because it is wide-spread and morally problematic. How common is medical deportation?1 The authors of the best research in this area to date conclude the following: The secrecy surrounding medical repatriations and the failure of federal or state agencies to monitor these de facto deportations makes it difficult to assess the true magnitude of the situation. Despite this fact, hospitals, NGOs, journalists, and advocates have been able to document many cases of forced or coerced medical repatriations in the U.S. A snapshot of cases from media and CSJ research indicates that there have been more than 800 cases of attempted or successful medical repatriations across the United States in the past six years. CSJ has documented medical repatriation cases from 15 states; hospitals have deported these individuals to seven different countries, including El Salvador, Guatemala, Honduras, Lithuania, Mexico, Philippines, and South Korea. This count, however, does not include the many medical repatriations that went unreported by hospitals and the federal government. (Lee et al. 2012)

There has been no similarly comprehensive estimate of the number of medical deportations that take place in the U.S. or any other country since this study was published. It is, however, worth noting the existence of firms that appear to specialize in medical deportation. For example, Allista characterizes itself on its website as a “medical deportation service,” explaining that it “seamlessly carries out the medical repatriation process for migrants by connecting patients to Mexico’s leading hospitals” (Allista). This suggests continuing robust demand for its services.

1  In this paper I focus entirely on medical deportation within the U.S. both because it seems to be the epicenter for this practice and because I know much more about it than I know about medical deportation in other countries.

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Why think medical deportation is morally problematic? Michael Young and Lisa Lehmann (2014) argue that medical deportation raises serious concerns about four well established values in bioethics: informed consent, transparency, equality, and justice, though their treatment of the latter two values blends enough to treat them together. First, Young and Lehmann point to the fact that medical deportations often take place without the informed consent of the patient. Second, Young and Lehman contend that the system of medical deportation undermines public confidence in healthcare providers. Finally, Young and Lehman contend that medical deportation is “an affront to the equal worth of all patients” (Young and Lehmann, 671) since it involves denying undocumented people medical care that is given to citizens and legal residents. Attempts to justify differential treatment “denigrates the contributions and strivings of many immigrants in society and overlooks the reciprocity owed to undocumented immigrants by virtue of the public benefits that their contributions help sustain” (Young and Lehmann, 672). I am sympathetic to much of what Young and Lehmann say. If anything, the authors underplay the extent to which informed consent is threatened. While some, such as John Henning Schumann (2016), claim that there are cases of voluntary medical deportation, we should be cautious. Patients who are targeted for medical deportation are highly vulnerable because of their immigration status and in many cases are not in a position to withhold their consent. However, it is important not to lose sight of the fact that there is more at stake than the well-being of the undocumented patients. Private hospitals have obligations to their owners, and public hospitals have obligations to the communities that support them. Both have radically finite resources, and a dollar spent providing care for one patient cannot be spent on another. So medical deportation is morally problematic not only because of the harm that can be done to those who are deported but also because of the opportunity costs that will be incurred by addressing the needs of these patients. Can ethical theory help us with an understanding of how we should respond to the practice of medical deportation? It is to that question that I turn in the next two sections.

16.2  The Need for Nonideal Theory In this section, I outline the distinction between ideal and nonideal theory and explain why nonideal theory is necessary to understand how we ought to respond to cases of medical deportation. John Rawls is the canonical source for the distinction between ideal and nonideal theory. According to Rawls, ideal theory “assumes strict compliance and works out the principles [of justice] that characterize a well-ordered society under favorable circumstances” (Rawls 1999, 216). In contrast, nonideal theory dispenses with the assumptions of strict compliance, a well-ordered society, and the favorable conditions that must exist in order to support such a well-ordered society. It is worth our while to linger over each of these ideas. The favorable conditions in question are that there are enough resources to meet the basic needs of all. First,

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the basic needs include requirements for food, water, shelter, and the like. They do not include all goods, and the circumstances in which ideal theory applies are generally characterized as involving “moderate scarcity” and are, of course, limited to the Humean circumstances of justice (Rawls 1999, 110). Second, a well-ordered society is one designed to advance the good of its members and effectively regulated by a public conception of justice. Thus it is a society in which everyone accepts and knows that the others accept the same principles of justice, and the basic social institutions satisfy and are known to satisfy their principles. (Rawls 1999, 397)

Third, strict compliance involves everyone acting within the bounds of the laws of the state (Rawls 1999, 309). While much ink has been spilled hashing out the details of the distinction between ideal and nonideal theory,2 those details are not important for the purposes of this paper. Nothing I say here will depend on drawing this distinction in anything other than a coarse-grained manner. No one will be surprised that the circumstances of the United States in the early twenty-first century are far from those to which ideal theory is meant to apply. It is certainly true that there are enough resources to meet the basic needs of all. Gross domestic product per capita in America was over $62,000  in 2018 (International Monetary Fund). Of course, GDP per capita is not evenly distributed, but all that is required in order to meet the first condition for ideal theory is that there be enough resources to meet the basic needs of all, and this condition obtains. However, the United States certainly does not count as being well-ordered in Rawls’s sense of the expression since it is false both that everyone accepts and knows that the others accept the same principles of justice and that the basic social institutions satisfy and are known to satisfy their principles.3 Furthermore, it is also false that everyone is acting within the bounds of the laws of the state. The ways in which our own society fails to meet the last two conditions of ideal theory are especially salient when considering medical deportation. Americans are especially divided about immigration,4 and undocumented residents such as Luis Alberto Jiménez and Quelino Ojeda Jimenez were not in compliance with U.S. law when they were injured in the U.S. It might seem obvious, then, that we should turn to nonideal theory when looking for guidance with regard to medical deportation. However, matters are more complicated than they might appear. Rawls himself claimed that we should shift to nonideal theory only “after an ideal conception of justice has been chosen” (Rawls 1999, 216). While Rawls was optimistic about the prospects of choosing an ideal conception of justice, it is unclear whether we are any closer now than we were in the early 1970s when anglophone political philosophers began to prioritize theorizing about it. In many ways, there is less consensus now (Bevir 2011 and Mills 2015). It would seem to be unwise to wait until ideal theory is complete to move onto nonideal theory. 2  See, for example, Farrelly (2007), Robeyns (2008), Sen (2009), Simmons (2010), Schmidtz (2011), Jubb (2012), Valentini (2012), and Rossi and Sleat (2014). 3  For discussion see Chambers (2006). 4  See Hopkins (2011), Valentino et al. (2013), Hainmueller and Hopkins (2014).

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One might go even further and argue that ideal theory has functioned – and continues to function – as an ideology, which confuses our moral thinking, rather than as a useful theory, which improves our moral thinking. As Charles W. Mills characterizes it, “ideal theory…dominant in mainstream ethics…as in part ideological, in the pejorative sense of a set of group ideas that reflect and contribute to perpetuating illicit group advantage” (Mills 2017, 73). While I recognize the importance of the issues at stake here, I limit myself to a few brief comments. To begin, the ideological critique of ideal theory is not necessary to the point that I wish to make here. It is enough for my purposes that ideal theory is not delivering the goods; this fact is sufficient to justify the turn toward nonideal theory. If it is also the case that ideal theory is attempting to foist counterfeit goods on us as well, that would provide another sufficient reason to use nonideal theory instead, but that reason is independent of the one on which I am relying. Furthermore, it is worth emphasizing that Mills himself is sympathetic to the contractualist approach that I have adopted here. As he writes in dialogue with Carole Pateman, [T]he variety of contract theory advocated by Rawls and Thomas Scanlon is centered on what principles we would choose to regulate society given the overriding commitment to respecting others’ personhood. I don’t see why this kind of contract isn’t perfectly defensible in principle as a set of moral guidelines. (Pateman and Mills 2007, 19)5

Yet even if we set aside worries of these kinds about ideal theory, we must be cautious about over-hasty applications of it to nonideal circumstances. Something like this seems to be at work in Young and Lehman’s discussion of medical deportation. The authors appeal directly to concerns about equality and justice, as if an ideal theory about these matters had been worked out. They claim, for example, that “the premises underlying medical deportation are at odds with the ethical demands deriving from human equality that clinicians assume by virtue of their role in society and their membership in the medical profession”. They also dismiss concerns about the legal status of the deported, pointing out that “many undocumented immigrants are heavily embedded in society, through work, family, and friends. This situation renders many immigrants de facto members of society, with no ethically distinguishing features from documented compatriots that have legal recognition as such  — a feature that is in no obvious sense morally relevant” (Young and Lehmann, 672). However, these responses are unsatisfying. First, at a very abstract level, it is true that “ethical demands deriving from human equality” do not permit us to distinguish between persons on the basis of something as arbitrary and contingent as citizenship. However, to invoke that point here seems odd. If we took seriously ethical demands deriving from human equality, then we would prioritize offering the best possible care to all humans, not just the ones who are currently in the U.S.  The proximity of people such as Luis and Quelino is at least as arbitrary and contingent as their citizenship. Taken to its logical conclusion, Young and Lehmann’s claim favors a massive redistribution of healthcare resources (including healthcare  I am indebted to the editors for pushing me on this point.

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professionals) to other countries. Such a redistribution would likely make very expensive care for people like Luis and Quelino difficult, if not impossible. Second, Young and Lehmann’s appeal to community membership is also unsuitable. They are surely correct that “many undocumented immigrants are heavily embedded in” their societies. Nevertheless, being embedded in a society is no less contingent and arbitrary of a property than being a citizen. Hence, it is unclear why pointing this out resolves anything. More importantly, not all undocumented immigrants are heavily embedded in their societies, and it seems unlikely that Young and Lehmann would fail to object if those who are not heavily embedded were subject to medical deportation as well. It would also be wrong to overlook two further facts here. To begin with, Luis, Quelino, and others who have been medically deported are not just people who lack citizenship or legal residency. They are in violation of U.S. law. Let me be clear. My point is not that this fact closes discussion on how they should be treated – far from it. Rather, my point is that we are squarely in circumstances of partial compliance, rather than full compliance. As Rawls saw clearly, these circumstances call for nonideal theory rather than the straightforward application of ideal theory. Additionally, the costs of caring for people in the circumstances faced by Luis and Quelino are considerable, and it matters on whose shoulders they fall. Again, ideal theory has little – if anything – to say in this regard. I conclude that what is needed here is an appeal to nonideal theory. But what would such a theory look like? It is to that question I turn in the next section.

16.3  Contractualism as Nonideal Theory The purpose of this section is to outline contractualism as nonideal theory. Before proceeding, I anticipate two possible sources of confusion and address them. To begin with, it is natural to associate Rawls’s own ideal theory of justice with the term “contractualism” since he describes his theory as one that “generalizes and carries to a higher level of abstraction the familiar theory of the social contract as found, say, in Locke, Rousseau, and Kant” (Rawls 1999, 10). But it is useful to remember that Rawls’s theory of justice involves a number of features that are absent from contractualism. These features include the original position, the veil of ignorance, and the choice of principles of justice in the original position behind the veil of ignorance. None of these features are present in contractualism. It is also worth remembering that in Rawls’s theory, The primary subject of justice is the basic structure of society, or more exactly, the way in which the major social institutions distribute fundamental rights and duties and determine the division of advantages from social cooperation. By major institutions I understand the political constitution and social arrangements. (Rawls 1999, 6)

In contrast to Rawls’s ideal theory of justice, contractualism applies directly to the actions of individuals and collective agents such as corporations. Furthermore, it

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does so in a manner that does not depend essentially on an ideal theory of justice that has been worked out in advance. A second possible source of confusion concerns the relationship between contractualism and social contract theory more generally. Despite its name, contractualism does not presuppose many of the familiar qualities of social contract theory such as natural law (Grotius 1625/2012), a state of nature (Hobbes 1651/1985), a distinction between a state of nature and a state of war (Locke 1689/2003), self-­ interested agents facing an n-player Prisoner’s Dilemma (Gauthier 1986), self-­ interested agents evolving into social cooperation (Skyrms 1996), or anything analogous involving patriarchal (Pateman 1988) or racial (Mills 1997) domination. Indeed, contractualism involves nothing like a contract at all.6 In light of all of this, one might be forgiven for wondering aloud whether contractualism is badly named. The reader will have to decide for him or herself. At any rate, deciding whether it is badly named is not among my concerns here. I would contend that there are clear lines of inspiration that extend from contractualism as a nonideal theory to Rawls’s approach to ideal theory, and from Rawls to the classic social contract theorists such as Grotius, Puffendorf, Hobbes, Locke, and Rousseau, even if those lines are often stretched thin.7 With these clarifications out of the way, let me turn to an articulation of contractualism. Though T.M Scanlon (1982), Thomas Nagel (1991), Stephen Darwall (2006), and Derek Parfit (2011) have offered influential statements of the theory, Scanlon’s mature version seems to have attained canonical status. According to Scanlon, An act is wrong if its performance under the circumstances would be disallowed by any set of principles for the general regulation of behaviour that no one could reasonably reject as a basis for informed, unforced, general agreement. (Scanlon 1998, 153)

It will be useful to illustrate this principle with one of Scanlon’s own examples. Let us imagine that Jones, a technician working in the transmitter room of a television station has suffered an accident. Electrical equipment has fallen on Jones’s arm, and it is impossible to rescue her without turning off the transmitter for fifteen minutes. Unfortunately, there is a World Cup match in progress. Millions of people throughout the country in which Jones lives are enjoying the game and will be distressed and frustrated if the transmitter is turned off. While Jones’s condition will not get any worse if she is not rescued, she will experience excruciating pain until she is rescued, and the match will not end for another hour (Scanlon 1998, 235). What is to be done?

 On the distinction between contractualism and contractarianism, see Darwall (2003).  I note in passing that it is possible to doubt the social contract bona fides of Rawls’s approach as well. For example, Nussbaum (2006, 54–69) raises some interesting questions about whether Rawls is better thought of in the context of Kant’s non-contractarian thinking than of the social contract tradition. 6 7

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A contractualist might respond along the following lines. First, consider the relevant stakeholders.8 In this case, the set of stakeholders is quite large since it consists not only of poor Jones but also of those watching the World Cup via the television station at which Jones works. Second, consider the various principles that might be proposed that would permit actions with regard to Jones (actions which include doing nothing). Third, group these principles on the basis of whether they permit leaving Jones to suffer while the match continues and those that do not. Finally, ask if every one of the principles that permit allowing Jones to suffer could be reasonably rejected as a basis for informed, unforced, agreement. If the answer is yes, then it is morally impermissible to allow Jones to do so, and Jones’s co-­ workers must rescue her, even though doing so will cause millions of people to undergo some degree of distress and frustration, as Scanlon himself concludes. In a moment, I return to what contractualism requires in the World Cup case, but I want to highlight some central features of this approach. First, the contractualist approach asks us to imagine all of the stakeholders as being able to propose responses to Jones’s situation, while requiring that any proposal be justified by a principle. Second, the approach also asks us to imagine all of the stakeholders as being able to accept or reject a principle, while requiring that either acceptance or rejection be accompanied by a reason. Only if the acceptance or rejection of the principle is reasonable are we to take it seriously. Or, as Scanlon himself puts it, “deciding whether an action is right or wrong requires a substantive judgment on our part about whether certain objections to possible moral principles would be reasonable” (Scanlon 1998, 194). In this context, if one says that it is reasonable to reject a particular proposed principle, one is not making a claim about (1) whether anyone does reject the principle, (2) whether it is in one’s rational self-interest to reject the principle, or (3) whether one would reject the principle under some set of idealized conditions (such as being behind a veil of ignorance). Rather, one is making a claim about whether there is sufficient reason to reject the principle (Scanlon 1998, 32–33). Finally, the contractualist approach allows any of the stakeholders to reject a principle, provided that it is reasonable for him or her to do so. It is, in this sense, much more like a system in which everyone has a veto than a system in which everyone gets to vote for or against principles. At any rate, contractualism’s distant relationship with social contract theory is probably somewhat clearer now. Even though contractualism does not involve a state of nature, a social contract, or highly general principles that unify us into a single body politic, it resembles social contract theory in as much as it involves the proposal and acceptance or rejection of rules for action. Let us return for a moment to the World Cup case. Scanlon’s guiding idea is that in this case Jones would have sufficient reason to reject any principle that would 8  The language of stakeholders is natural to the contractualist approach, though it tends not to be used. For notable exceptions, see Silver (2012 and 2015). Scanlon himself tends to speak of the “beneficiaries” (1998, 213), but this practice is slightly misleading because the result of rejected principles is not always a benefit. For example, it might be the case that every principle that permits telling a lie can be reasonably rejected, even if no one is better off as a result of the lie not being told.

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permit her to spend an hour of agony. Of course, those watching the World Cup would have a complaint about any principle that caused them to miss fifteen minutes of the match. However, Scanlon and other contractualist maintain that whether or not there is sufficient reason to reject a principle is determined by a pairwise (that is, one-to-one) comparison of the reasons in question. Since Jones has far more to lose than any one of the millions of people watching the World Cup, Jones can reasonably reject a principle that causes her an hour of agony for the very reason that suffering agony is much worse than experiencing mild frustration. In contrast, no viewer of the match is in a position to reasonably reject a principle that causes him or her frustration because experiencing mild frustration is much better than suffering an hour of agony. Two further clarifications are now in order. The first is that the reasons to which one can appeal when accepting or rejecting a principle do not include impersonal values. In order for a principle to be reasonably rejectable there must be some relevant standpoint from which people typically have good reason either to refuse to accept a principle as part of their own practical thinking or to refuse to recognize it as others may use to justify their conduct. (Scanlon 1998, 218)

Hence, the fact that allows Jones to suffer would maximize overall utility is not grounds for reasonably rejecting a principle to permitted saving her from an hour of agony, for there is a  relevant standpoint from which people typically have good reason either to refuse to accept a principle as part of their own practical thinking.9 Second, the reasons for accepting or rejecting a principle are not limited to the effects on the well-being of others. Though the World Cup case involves only such reasons, contractualism is not limited to such reasons. For example, if I promise to meet a student at lunch, the very fact that I promised can provide a reason for the student to reject reasonably principles that would permit me to avoid going to lunch. So too grounds for reasonable rejection might be found in the fact that a particular action involves lying to or deceiving another, manifesting ingratitude or cowardice, being ungenerous or rude, and so on. It is, to be sure, a very complicated matter to weigh the relevant reasons against one another, and contractualists offer nothing like an algorithm for doing so, of course. As we shall see in the next section, it is not necessary to do anything like this for the case of medical deportation. As a result, I won’t go any further into the matter here.10 Like every interesting philosophical theory, contractualism is controversial. While this is not the place to defend the theory, I do want to say a few words about why it is appealing as an approach to nonideal circumstances. To begin with, contractualism does not require a fully worked out ideal theory to support it. The

 This point deserves more consideration than I can give it here, but see Darwall (2006).  It almost goes without saying that we are not usually meant to apply these principles and consider whether or not they could be reasonably rejected in real time. Contractualism provides a criterion of rightness, not a decision procedure, much like utilitarianism; see Brink (1986) and Crisp (1992) and perhaps some forms of Kantianism, such as Timmons (1997).

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grounds for reasonable rejectability are commonsensical and not in need of lexical ordering. Furthermore, nothing about contractualism assumes that moral decisions need to be made in a well-ordered society. Contractualism considers reasons for accepting or rejecting principles within the context of the imperfect world that all of us inhabit. Finally, contractualism does not presuppose perfect compliance with legal or moral norms. In the next section, I shall consider what it has to say about cases of medical deportation.11 Before turning to that task, let me address a possible source of concern. After reading all of this, one might wonder just how nonideal contractualism is. One might be concerned about the fact that contractualism makes use of thought experiments, such as the World Cup case, and that thought experiments are abstractions and generalizations away from the messy particulars of the real world. In response, let me clarify a few points. First, it is often useful to speak of a strict dichotomy between ideal and nonideal theory, especially when attempting to draw attention to differences in the approaches of rival theories. However, we should not allow that fact to distract us from the fact that theories sit on a continuum between ideal and nonideal poles.12 Contractualism need not be at the extreme of the continuum to be a nonideal theory any more than someone need be completely bereft of hair in order to be bald. While contractualism might not be the most nonideal of all nonideal theories, I do not think it needs to be so in order to be a member of the club. Second, it is important to keep in mind the point made above about Rawls’s distinction between ideal and nonideal theory. Ideal theory presupposes full compliance while nonideal theory does not. Since contractualism does not presuppose full compliance, it is firmly nonideal by those lights. It really must be in order to be of help in the case at hand for precisely the reason that the undocumented people of concern here are not fully compliant with the law. Third, the fact that contractualism makes use of thought experiments, such as the World Cup case, is not a sufficient reason for thinking of it as an ideal theory – far from it. The World Cup case provides a useful illustration of how contractualism helps make salient the particular moral features of the circumstances and how it helps us weigh the relevant moral reasons against one another. Any moral theory can be illustrated through simple, abstract examples such as this one, but that fact does not make all moral theories ideal theories. One of the concerns that helps to motivate nonideal theory is an overreliance on the part of ideal theories on thought experiments, but that concern need not extend to a prohibition on any use of thought experiments whatsoever.13

 For thinking along similar, if not identical, lines, see Southwood (Forthcoming).  Florencia Luna’s contribution in this volume “Ideal and nonideal theories: The challenges of decision-making in an imperfect world” discusses this in detail. 13  I am grateful to the editors for asking me to expand on this point. 11 12

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16.4  Applying Principles The main purpose of this section is to introduce three principles and apply them to cases of medical deportation. However, before doing so I will walk through the mechanics of applying principles. I also illustrate the nature of these principles by applying them to the World Cup case. Contractualism requires that we consider principles of action and determine whether each of the stakeholders can reasonably reject them. How many principles are there? Scanlon’s suggestion that there is an “indefinite number” of them might initially leave one puzzled (Scanlon 1998, 201). Nevertheless, the idea is clear enough. For any given situation, many principles will not apply at all. For example,14 in the World Cup case, one might consider the principle • P1: Tell a harmless lie if it will provide a social good. Or the principle • P2: Break a promise when it is to my benefit. It is likely that there are circumstances in which principles such as P1 and P2 cannot be reasonably rejected. I might, for instance, be planning a surprise birthday party for someone who likes surprises. Alternatively, I might break a promise to meet a student for lunch, if I knew the student planned to kill me. However, P1 and P2 have no application in the World Cup case. However, I raise this point here since matters are likely to be more complex in at least some cases of medical deportation. I return to this point later. Now consider a third principle. • P3: Prevent all suffering. Like P1 and P2, there are circumstances in which P3 cannot be reasonably rejected. If I have the opportunity to save someone from suffering at no cost to myself (perhaps by throwing a drowning person a life preserver), then it is highly unlikely that I or anyone else can reject P3. However, P3, like P1 and P2, doesn’t apply to the World Cup case since it is not possible, ex hypothesi, to prevent any suffering at all from occurring. However, P3 points to a principle that does apply here. • P4: Prevent the greatest amount of suffering from occurring. Clearly, P4 applies to any set of circumstances in which it is possible to act in ways that increase or decrease suffering. Scanlon’s own contention is that no one in the World Cup case can reasonably reject P4. Recall that contractualism requires pairwise comparisons for determining whether or not principles can be reasonably rejected. While each person watching the match would experience some suffering as a result of interrupting the broadcast, Jones would suffer more than each  Scanlon himself does not walk through proposals and rejections of principles, so I have attempted to reconstruct the general line of thought here.

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individual would. The application of P4 tells us that it would be wrong to allow the broadcast to continue at the cost of Jones’s agony. I will have more to say about the World Cup case in a moment, but let us turn now to Luis Alberto Jiménez. It might initially be thought that P4 could not be reasonably rejected by any of the stakeholders in these circumstances. If that were the case, then it is certainly true that it would be wrong to medically deport Luis, since doing so clearly caused him great suffering, even if it saved Martin Memorial millions of dollars. However, there are other principles in play that allow a more nuanced response to these circumstances. A little unpacking will be necessary here. Begin with a principle that takes its inspiration from the idea of Pareto efficiency. Roughly, the move from one set of circumstances C1 to another C2 is Pareto efficient if and only if no one in C2 is worse off than he/she was in C1 and at least one is better off in C2 than he/she was in C1 (e.g., Sen 1993 and Hansson 2004). • P5: Make at least one person better off provided no one is worse off. Like P1, P2, and P3, P5 applies to many contexts for action, though it does not quite apply here since Luis and Martin Memorial are playing a zero-sum game in the short run. Anything that makes Luis better off (or prevents him from being worse off), makes Martin Memorial worse off.15 Consider now a principle based on a related idea, Kaldor-Hicks efficiency. (Kaldor 1939 and Hicks 1939). Crudely put, the move from one set of circumstances C1 to another C2 is Kaldor-Hicks efficient if and only if at least one person is better off in C2, and this person could, in principle compensate anyone who is made worse off by moving from C1 to C2. • P6: Make at least one person better off provided this person could, in principle, compensate anyone who is made worse off. Unlike P5, P6 applies to situations in which the status quo Pareto dominates all of its alternatives (i.e., situations in which every action will leave at least one person worse off). Clearly, P6 applies to cases of medical deportation. However, it is just as clear that P6 could be reasonably rejected by Luis. This is the case because it would allow Martin Memorial to dismiss Luis without any care whatsoever since it only requires that those who are made worse off could be compensated for their loses. While neither P5 nor P6 provide credible principles, they point directly to something that does. This principle strengths the idea of Kaldor-Hicks efficiency by requiring not only that those who are harmed by an action can be compensated but that they are compensated. • P7: Make at least one person better off provided (a) this person could, in principle, compensate anyone who is made worse off and (b) this person does, in fact, compensate anyone who is made worse off.

15

 I turn from the short run to the long run in just a moment.

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It is plausible that neither Luis nor Martin Memorial could reasonably reject P7. If Luis were compensated for any losses he experienced, then in the long term, he’d be no worse off. In fact, the possibility of compensation turns what was a zero-sum game in the short term into a positive sum game in the long run.16 Would P7 allow Martin Memorial to medically deport Luis? We must be very cautious in answering this question. It would certainly not permit Martin Memorial to treat Luis in the way that it actually treated him. Martin Memorial saved roughly $500,000 per year by deporting Luis, and it left him in far worse circumstances than he experienced when he was being cared for in the U.S. Luis could have reasonably rejected a principle that allowed this kind of treatment of him. Therefore, Martin Memorial was clearly in the wrong. Furthermore, if Martin Memorial had incurred special obligations to Luis by, for instance, promising to care for him and not to deport him, then Luis would plausibly have been able to reasonably reject his deportation. To the best of my knowledge this has never been suggested, but the issue could arise in other cases of medical deportation. However, if Martin Memorial was able to ensure that Luis would receive similar levels of treatment such that he was compensated for not being treated in the U.S. by Martin Memorial, then it would appear that he could not reasonably reject P7 as permitting this action. Something similar could be said with regard to Quelino Ojeda Jimenez. Like Luis, Quelino could have reasonably rejected any principle that treated him in the way that Christ Medical Center did. Quelino did not receive in Mexico anything like the care that he was receiving in the U.S. Christ Medical Center saved hundreds of thousands of dollars per annum by deporting him, but it significantly shortened his life and made his remaining time much worse. Nevertheless, if Christ Medical Center could have compensated Quelino with a similar level of healthcare upon his repatriation, and if it incurred no special obligations to him by, for example, promising to keep him in its care, it would appear that Quelino would not have grounds for reasonably rejecting a principle such as P7 that allows deportation. Other stakeholders might also have grounds for reasonably rejecting P7, and I shall turn to them in a moment. But before I do so, I would like to return to the World Cup case. Recall that on Scanlon’s interpretation, contractualism tells us that “we should not wait” for the match to end, and we should rescue Jones immediately to prevent her from suffering as a result of her accident (Scanlon 1998, 235). Nevertheless, thinking through the cases of Luis and Quelino gives me pause. If Jones could be compensated for her suffering, and if there was some mechanism that ensured that she would receive this compensation, then it might be the case that she could not reasonably reject a principle like P7 that would permit her to suffer for an hour until the match was over. As a practical matter, it might seem difficult to set up this mechanism prior to the accident. But in fact it would not need to be very  Note that I am ignoring cases in which the patient’s reason for coming to the U.S. is non-­ economic. If a patient came to the U.S. to avoid, say, political persecution, then this fact alone is enough to provide him or her with grounds for reasonably rejecting any principle that would permit their return. To the best of my knowledge, this issue has not arisen in a case of medical deportation, but it is only a matter of time before it does.

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different from an insurance policy that protects workers against on-the-job accidents. To be sure, the level of agony that Jones suffers is relevant here, and it seems plausible that some levels of pain are so high that nothing that humans can provide would be sufficient to compensate for them. But that need not be so here. This conclusion might seem like something of a digression, and perhaps it is no more than that. That said, it is worth noting that the World Cup case has been at the center of discussion about aggregation with contractualism for the last two decades (e.g., Arneson 2002; Ashford 2003; Hirose and Bognar 2009; Fried 2012; Otsuka 2015). The perceived problem has been that contractualism’s structure of pairwise comparisons is insufficiently sensitive to cases in which very large goods can be obtained (or very large harms can be avoided) at a cost to one individual. Suppose, as an example, that I could either cut off Smith’s two fingers or allow every other person in the world to lose one finger each. Since contractualism requires that we determine whether principles are accepted or rejected on the basis of pairwise comparisons, it appears to follow that Smith could reject any principle that permits her to lose two fingers, even though it means a harm nearly as bad to more than seven billion people. But this problem appears less challenging if principles like P7 are in play. If Smith could be compensated for the loss of her two fingers, it would be permissible to cause her to suffer this harm in order to avoid causing much more harm. However, fuller development of this line of thought will have to wait for another day. Let me conclude this section by addressing a general worry raised by Andrea J. Pitts in their contribution to this volume about the use of principles in cases like these. Pitts writes, [M] ajor works in bioethics such as those of Beauchamp and Childress and Veatch tend to treat the principles of justice, non-maleficence, and beneficence as disconnected from the sociopolitical conditions in which they are being examined. For example, while mentionings of racial health disparities are peppered throughout their works, little careful analysis digs into the systemic, patterned forms of injustice, harm, and mistreatment that impact communities of color in the United States.

There is nothing here with which I wish to disagree, at least for the purposes of this chapter. The contractualist approach that I have outlined and applied here is signficantly different from the sort of thing that Pitts has in mind. Beauchamp and Childress, for example, apply the principle of beneficence invariably across the entire domain of bioethical cases. Contractualism assumes no such universal principles. There is, of course, the unifying idea of morality – namely, that an action is impermissible if every principle that permits it can be reasonably rejected. But that unifying idea cannot itself be a principle since it would then have to be applied to itself. Rather, the point of the contractualist framework is to find some principle in the given case such that no one could reasonably reject it. Furthermore, if it were the case that a suggested principle is “disconnected from the sociopolitical conditions” in a way that is morally problematic, that would appear to provide sufficient reason to reject that principle.17 17

 Once again, I am indebted to the editors for pressing me on this point.

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16.5  Other Stakeholders I return now to the question of whether there are other stakeholders who can reasonably reject principles such as P7 in cases of medical deportation. One stakeholder that I have not yet discussed is the federal government. The power to deport non-­ citizens who are in violation of laws concerning immigration is clearly a power of the federal government. It is certainly plausible that medical deportation by private corporations or by institutions owned by local or state governments is a usurpation of this power. If so, there seems to be a case for saying that the federal government could reasonably reject a principle that allowed patients to be deported. However, matters are a little more complicated than they might first appear. It is plausible that the federal government is permitted to delegate some of its powers. So the mere fact that medical deportation is not done by the federal government does not provide the federal government with grounds for reasonably rejecting a principle that would permit it. However, it is clear that the delegation of federal power must involve significant oversight in order to ensure that this power is not abused. It is in no way clear that this was the case when Luis and Quelino were deported. Therefore, the federal government could have reasonably rejected principles that permitted their deportation and could also reasonably reject any principles that did not require significant oversight of the deportation. Note that this claim is distinct from the claim that the federal government did reject such principles. What is important from the contractualist point of view is that the federal government could reject these principles. Having grounds to do so is sufficient for making the action wrong. So medical deportation would be morally permissible only with significant federal oversight. Another stakeholder is, of course, the nation-state to which the patient is being deported. Consider, first, cases in which the patient is returned to the nation state in which he or she is a citizen. In such a case, the only grounds that the nation state would have for reasonably rejecting a principle that permitted medical deportation would be the burden of the healthcare expenses of the patient. However, as we have seen, P7 requires that the patient be compensated for medical deportation. It could easily be extended to cover compensation for the state to which the citizen is returned. Consider, second, cases in which the patient is returned to the nation state in which he or she is a citizen. Initially, this might seem like an undermotivated possibility. However, it is at least plausible that a hospital might want to deport patients to third-party nation-states because the cost of care is lower in them. However, even if both the hospital and the nation-state were in agreement about this possibility, it seems clear that the patient would have grounds for reasonably rejecting any principle that deported him or her without repatriating him or her. For deportation without repatriation would leave the patient especially vulnerable to exploitation because the lack of citizenship exempts him or her from certain legal rights and protections. Let me turn now to two groups of stakeholders that I have not yet considered. The first of these is the group of medical professionals who are treating the patient to be deported. Medical professionals certainly have grounds to reasonably reject

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principles that permit the mistreatment of their patients. However, such rejection is largely redundant since the patients themselves also have grounds for rejecting these principles. To the extent that the medical professionals are pursuing the health and well-being of their patients, their grounds for rejection will not differ from those of the patient him- or herself. The second group of stakeholders is made up of family members and non-professional potential caretakers of the patient. These family members and caretakers could also have grounds for reasonably rejecting the principles that put undue burdens on them. For example, Luis’s elderly mother, Petrona, suffered from such a burden when Luis was returned to Guatemala. However, if medical care for the patient is provided as part of the compensation, there should be no undue burdens. A more complicated case is one in which the patient’s family lives in the U.S., but he or she is to be deported. The grounds for reasonable rejectability in cases like these would depend on the nature and closeness of the familial connections. While the mere fact that one had relatives in the U.S. would not be decisive, matters would be different if the patient and his or her family would be harmed by disrupting their bonds. Importantly, however, it appears that the patient would have the same grounds for reasonably rejecting principles that disrupted these connections, so the rejection by the family members would be redundant. I will conclude by considering one more stakeholder, the public at large. Like all acts, deportation has expressive values. In particular, it expresses condemnation of those who live and work in the U.S. – who contribute to the growth of its economy and the plurality of its community – but who do so without legal documentation. Deporting especially vulnerable people, such as patients like Luis and Quelino, expresses this condemnation in a way that makes many – myself included – feel uncomfortable. Nevertheless, two points need to be taken into consideration. The first of these is that nothing about a contractualist approach to medical deportation endorses the moral permissibility of deporting patients in the way that Luis and Quelino were deported. It endorses doing so only when they are compensated with medical care that leaves them no worse off. The second point is that contractualism deals somewhat poorly with matters of expressive value. While the expressive value of an action affects every member of the public to some degree, the harm done by it is spread widely and does not seem to provide grounds for anyone to reasonably reject a principle that permits it. This is a shortcoming of the theory with which we must reckon, though doing so is beyond the scope of this paper. I have argued that there are possible conditions under which medical deportation is morally permissible. However, these conditions are not the ones under which medical deportation is carried out in the U.S. today. Real-world cases of morally permissible medical deportation are rare at best, and I see little prospect of this situation changing. Acknowledgments  I am grateful to Ben Bayer, Drew Chastain, Kimberly Kahn, and Joel MacClellan for comments, criticisms, and suggestions. Generous audiences at the American Society for Bioethics and Humanities, the Western Michigan University Medical Humanities Conference, and the Association for Practical and Professional Ethics did much to improve this paper as well. Finally my thanks to the editors of this volume, Liz Victor and Laura K. Guidry-­ Grimes, for their helpful suggestions and for their patience and supportiveness.

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Chapter 17

Nonideal Theory and Ethical Pragmatism in Bioethics: Value Conflicts in LGBTQ+ Family-Making Amanda Roth

Consideration of ideal versus nonideal theory is commonplace within analytic political philosophy. Often giving an origin story stemming back to Rawls’s distinction in his momentous work on justice in liberal democratic societies, contemporary political philosophers continue to debate the relative priority and sufficiency of each approach to political theorizing. Rawls’s A theory of justice, of course, is a work of ideal theory, and Rawls famously suggests that ideal theory is about “what a perfectly just society would be like,” and is necessary for the more important work of nonideal theory—work that will matter when it comes to making the real world a more just place (8). The basic ideal vs. nonideal theory distinction and related philosophical controversies expand beyond political philosophy to any area of value theory, including bioethics. In this paper, I take up a particular way of doing bioethics in a nonideal fashion, through the approach of pragmatism. The particular pragmatist methodology I employ stems from contemporary interpretations of John Dewey’s notion of ethical inquiry as being aimed at solving conflicts that arise in the course of living out our values. In what follows, I begin by offering some distinctions regarding ideal vs. nonideal theory and considering some of the many ills of ideal theory as a dominant approach to value theory in analytic philosophy. I then move to focus on pragmatism as a particularly promising version of nonideal moral theorizing, and explain the specific pragmatist approach I have in mind: an approach on which moral inquiry is about resolving moral problems we face as we go about living. In the second half of the paper, I then employ an extended case study of a current bioethical debate— the value of genetic relations within families and the use of reproductive technologies to allow LGBTQ+ people to produce biologically related children—to A. Roth (*) Department of Philosophy, State University of New York—Geneseo, Geneseo, NY, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 E. Victor, L. K. Guidry-Grimes (eds.), Applying Nonideal Theory to Bioethics, Philosophy and Medicine 139, https://doi.org/10.1007/978-3-030-72503-7_17

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demonstrate the importance of doing bioethics from a nonideal theory approach and the productiveness of the problem-resolving pragmatist interpretation of nonideal theory.

17.1  Ideal vs. Nonideal: The Distinction Let us begin by getting clearer on what the ideal/nonideal theory distinction tracks, since there are multiple ways to conceive of the distinction. At its root, going back to Rawls’s notion of ideal theory as concerned with what a perfectly just society would be like, nonideal theory would then presumably be focused on the actual, quite imperfect, world we live in. In this vein, Ingrid Robeyns uses the metaphor of “a mythical Paradise Island” to refer to ideal theory: We have heard wonderful stories about Paradise Island, but no one has ever visited it, and some doubt that it truly exists. We have a few maps that tell us, roughly, where it should be situated, but since it is…far away from all known societies, no one knows precisely where it is situated. Yet we dream of going there, and ask ourselves how we can get there, and in which direction we should be moving in order to eventually reach [the island]. (344–5, italics in the original)

Ideal theory then will obviously be more abstract than nonideal theory, dealing as it does with a non-actual perfect world, in contrast to our existing very imperfect one. To be more precise here we can draw on Robeyns along with Laura Valentini, who each offer recent conceptual mappings or typologies of the ideal vs. nonideal distinction. Valentini (654) lays out three different meanings of the distinction: full compliance vs. partial compliance, utopian vs. realistic theorizing, and end-state theory vs. transitional theory. Valentini appeals back to Rawls to lay out the full compliance vs. partial compliance meaning of the ideal vs. nonideal distinction: “‘ideal theory’ stands for theory designed under two assumptions: (i) all relevant agents comply with the demands of justice applying to them; and (ii) natural and historical conditions are favourable – i.e., society is sufficiently economically and socially developed to realize justice”; in contrast, nonideal theory is theory that lacks either or both of those assumptions (Valentini 655, citing Rawls 1999 8, 215). Nonideal theory, then, will cover a host of issues having to do with reparation after failure to comply with the demands of justice, as well as questions of what becomes of one’s own moral duties when others are not fulfilling their duties; such issues are generally referred to as falling under “partial compliance” (Valentini 655). As many of those objecting to ideal theory have pointed out, it seems that most of the crucial and urgent issues of injustice we face in the actual world will be matters of partial compliance and/or reparation. Thus, many critics—especially those coming from a feminist or antiracist perspective—worry about the appropriateness of ideal theory as a dominant method of doing moral and political philosophy (See more on this below). Meanwhile, Valentini labels her second interpretation of the ideal/nonideal distinction “utopian vs. (more or less) realistic” theorizing (656). By this, she means to

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focus on “feasibility” considerations. A fully utopian theory rejects any feasibility constraints on the principles of justice, while a theory that accepts at least some consideration of feasibility as appropriate would be a “realistic” theory, though realistic theories can be more or less realistic depending on how much idealization versus concern for facts about what humans are like the theory incorporates (657–10). A final way of understanding the ideal/nonideal distinction is in terms of end-­ state vs. transitional theory. Here, Valentini points to “whether a normative political theory should aim at identifying an ideal of societal perfection, or whether it should focus on transitional improvements without necessarily determining what the ‘optimum’ is” (pg. 654). Valentini (660) goes on, again appealing to Rawls, to lay out the main case in favor of the necessity and priority of end-state theorizing—that without having at least a vague sense of where we are going, attempts to transition in the real world to a somewhat more just society will be left floundering. How would nonideal theorists know what to aim for, after all, without some sense of where we are going or an end-state? This seems to be the main thrust of Robeyns’s paradise island metaphor as well. The island, then, gives us some sense of which direction to go in as we attempt to make a society more just in some dimension or other (345). For my purposes—and I believe for pragmatist approaches to nonideal theory in general—this is the way of cashing out the ideal/nonideal distinction that matters most; yet I will also show how all three of Valentini’s ways of mapping the distinction are relevant to making the case for a pragmatist nonideal theory as a promising approach to bioethics. Moreover, the pragmatist approach to nonideal theory will have much to say about Robeyns’s paradise island metaphor and the question of what, if any, guidance the end-point of a perfectly just society can offer to us.

17.2  Against Ideal Theory With Robeyns’s and Valentini’s contributions of how best to map the ideal/nonideal distinction in place, we can move to consider the current of resistance to ideal theorizing in moral and political theory, which has arguably been rising over time. The general point in favor of the priority of nonideal vs. ideal theory hearkens back again to Rawls himself. Rawls (1999, 8) clearly prioritized ideal theory in his work in one sense, believing that it was necessary to first work out an ideal theory before turning to the “more pressing problems” of real societies; but notice that if the underlying motivation for taking up systematic theorizing about the perfectly just society is ultimately in order to be able to properly theorize and execute changes to our world to make it more just, then in another sense, the actual world remains the priority. The question then becomes merely, was Rawls correct in believing that in order to best do nonideal theory, we must first develop a satisfactory ideal theory? Below I explore two different, but complementary, ways to answer this question in the negative.

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17.2.1  Ideal Theory as Ideology In line with much of what Robeyns and Valentini have to say about ideal vs. nonideal theory, Charles Mills draws the distinction in terms of ideal theory’s (problematic) “reliance on idealization to the exclusion, or at least marginalization, of the actual” (Mills 168). This exclusion or marginalization occurs inasmuch as “ideal theory either tacitly represents the actual as a simple deviation from the ideal, not worth theorizing in its own right, or claims that starting from the ideal is at least the best way of realizing it” (Mills 168). Mills goes on to lay out a list of the traits of ideal theory that is simultaneously a list of ills; ideal theory will involve strict compliance (the assumption that most or all people and institutions will conform to their moral and political duties), will focus on ideal social institutions (that is, without attention to how social institutions might actually work in the actual world), will put forth an idealized social ontology (e.g. the atomistic individualism of classical liberalism) and idealized human capacities (e.g. the ignoring of disability and relationality), and finally, will have little or nothing to say about systemic injustices in real societies (168–69). It is clear from the context within Mills’s article, that even those traits of ideal theory that at first seem neutral—e.g. strict compliance and a focus on ideal social institutions—are in fact problematic; for taken as a whole, this is an obviously objectionable way to approach value theorizing. As Mills puts it: Now look at this list, and try to see it with the eyes of somebody coming to formal academic ethical theory and political philosophy for the first time. Forget, in other words, all the articles and monographs and introductory texts you have read over the years that may have socialized you into thinking that this is how normative theory should be done….How in God’s name could anybody think that this is the appropriate way to do ethics? (169, italics in the original)

This list of individual shortcomings points to a diagnosis of what has gone wrong in ideal theory coming to be the main way normative theory is done in analytic philosophy: that ideal theory is ideology. By ideology, Mills means a “pejorative sense of a set of group ideas that reflect and contribute to perpetuating illicit group privilege” (2005, 164). More specifically, Mills characterizes the dominance of ideal theory as a not necessarily intentional reliance on beliefs, values, assumptions, and such that derive from the “interests and experiences of a small minority of the national population—middle-to-upper-class white males—who are hugely over-­ represented in the professional philosophical population” (172). Mills (2005, 172) goes on to point out that inasmuch as ideal theory cannot represent the realities of sexism, white supremacy, and/or class-based exploitation and marginalization, the interests of women, people of color, and the poor and working-class are not served. This point generalizes, of course, to any kind of structural disadvantage based on social identity.

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Theorists committed to philosophizing from a position focused on drawing attention to and ultimately ending structural inequalities have taken up Mills’s call.1 For instance, Lisa Tessman begins a 2009 collection of feminist work in ethics, social, and political philosophy subtitled “Theorizing the Non-Ideal,” by appealing to Mills as background and inspiration. Feminists, given their concern about actual world injustices based on gender and other axes of inequality, are of course likely to be deeply sympathetic to, if not outright committed to, Mills’s objections to ideal theorizing. Chapters within Tessman’s  collection criticize various idealizing assumptions about humanity that are philosophically commonplace, including the idealizations of “singleton” embodiment (the one body, one person assumption), heteronormativity, lack of need for care, and abledness with regard to cognitive capacities. I point to this specific volume in part to draw out another important question regarding what I am up to in this paper in relation to the usual ideal/nonideal theory debates, which has been relegated to the background thus far. As made clear above, the ideal/nonideal theory debate is most at home in political philosophy. Indeed, one might even doubt on the face of it how it can arise in applied moral philosophy, such as within reproductive ethics, where the questions being considered are inherently questions of the quite imperfect real world, and often deeply related to issues of partial compliance and reparation. The case study I lay out below will elucidate the sense in which some approaches to the issue of LGBTQ+ family-making and the moral significance of genetic relations take on ideal theory. As a kind of ground-­ clearing, I will address this concern in a more general way. It is true, of course, that any kind of applied moral philosophy will have to deal with the actual world in ways that more abstract theorizing about justice common to political philosophy need not. After all, the very notion of applied ethics involves taking up moral or social conflicts that our societies currently face and applying the tools and methods of moral philosophy to them. To do applied ethics about, say, global poverty, or abortion ethics, or factory farming seems inherently to be grounded in the real world with attention to empirical realities (e.g. what factory farming is like, that it is primarily women and only people with female reproductive organs who can become pregnant, the economic consequences of different principles of charitable giving, etc.) required, rather than taken up as abstractions in search of paradise island. This is an attractive view about applied ethics, but I am not sure it is accurate. I think, instead, that applied ethics is often less tied to the actual world than it ought to be. Consider as an example one of the most famous analogies in applied moral philosophy: Judith Jarvis Thomson’s violinist example, from her “In defense of abortion.”2 Thomson’s (1971) ingenious analogy is extremely revealing of many 1  Importantly, Mills (170) himself points to previous feminist, antiracist, and anti-capitalist work that has eschewed ideal theory, pointing to Alison Jaggar, Marx, and Frederick Douglass. 2  For anyone who is not familiar with this analogy, Thomson puts forth a thought-experiment in which the reader is asked to imagine themselves waking up in a hospital bed, attached through their kidney to the kidney of a famous violinist. Because the violinist will die without this form of

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of our deep moral intuitions about what we owe to others when it comes to saving lives and the use of our own bodies; the pay-off, as she concludes, is that even if a fetus has a right to life, it does not have a right to use another person’s body to stay alive, and hence abortion—though it might be morally indecent at times—is not a violation of a fetus’ rights. Despite the power of this thought-experiment, a significant literature has sprung up among feminist philosophers rejecting Thomson’s approach as appropriate for the topic of abortion (see Roth 2018 for discussion of this literature). Some concerns with the violinist case are that it strips pregnancy and abortion of all social and emotional meaning and significance, such that while Thomson offers an extremely powerful and seductive argument on one level, it is a way of viewing pregnancy and abortion that seems completely alien to the experience of many (most?) people who have actually been pregnant and/or terminated a pregnancy. One way to diagnose that kind of reaction to Thomson’s famous case is to point out that though she is doing applied ethics, in many ways Thomson’s approach begins with a search for some version of paradise island. The various thought-­ experiments are meant to help us pare down to some basic fixed moral principles— e.g. other people generally do not have a right to use our bodies to stay alive—and then she goes on to raise more complicated cases that help us better specify the principles. In other words, we might accurately describe Thomson’s approach as looking for perfect justice regarding pregnancy and abortion choices. This can be brought out by noticing an alternative way that many feminist philosophers begin their theorizing about abortion: starting with women’s lived experiences and framing their discussions within their commitment to overcome gender oppression. In other words, they begin with the actual world and the way that the problems of unwanted pregnancy and abortion decision-making arise for real women. If we accept that in fact, applied ethics can still be done in a more-or-less ideal fashion, there remains another important objection to the project I have in mind here, and in particular Mills’s case that ideal theory is ideology: we must draw a distinction between bad idealizations and idealizations in themselves. Robeyns (353) suggests that all ideal theory engages in idealization, and she recognizes two problems with idealizing. First, that “we need to know how to deal with the idealization when moving to the nonideal level” and that in general, philosophical work has not offered much help in surmounting this quite challenging issue (357–8). The second problem with idealizations is not with idealization in itself, but with bad idealizations—that is, idealizations that ignore some kinds of injustice. Here, much in line with the feminist philosophical work in Tessman’s collection and elsewhere, she offers the idealization of persons as independent both in terms of needing care from others or in terms of having duties of care to others (Robeyns 358). Yet, the implication Robeyns wishes to draw is not that ideal theory is inherently objectionable because it often involves bad idealizations, but rather that ideal theorists and human dialysis, and because the reader is the only tissue match, the Society of Music Lovers has kidnapped the reader and forcibly hooked them up to the violinist to save his life. Unhooking, the doctor explains, will kill the violinist since he can live only through the use of the reader’s body.

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their interlocutors must be more cautious and precise in understanding exactly what it is that ideal theory is aiming to do, and how ideal theory will often have no direct implications at all for what we ought to do in the real world, to overcome real world injustice (359–60). As a philosopher concerned with structural inequalities and focused on gender and sexuality in much of my work, I am deeply sympathetic to Mills’s critique of ideal theory and am committed to nonideal theory as an approach to normative thinking in my own work. However, I also find Robeyns’s point worth bearing in mind in moving forward. Perhaps sweeping critiques like Mills’s run the risk of collapsing different objections, or failing to keep distinct what is inherent to the nature of ideal theory in itself—significant idealization—compared to ideal theory as it is likely to be done in a society that is so stratified by gender, race, and class—that is, ideal theory that involves bad idealizations. Fortunately, for my purposes here, I needn’t come to a final conclusion on the disagreement between Mills and Robyens, nor the question of whether ideal theory ought to be completely rejected as a method for any kind of moral theorizing. My aims are comparatively narrow in relation to those of Mills and Robyens. I want to demonstrate the appeal and productivity of a nonideal pragmatist approach to bioethics—specifically the issue of LGBTQ+ family-making through reproductive technology. In doing so, I will take onboard two lessons from the above debate between Mills and Robyens: first, given that structural inequality disadvantaging  LGBTQ+ people is a prominent feature of existing societies, we have good reason to suspect at the outset that ideal theorizing will not be up to the task of helping us make progress on this issue. Second, that this conclusion need not lead us to reject ideal theorizing as an appropriate method in all areas of philosophy (though I leave open whether that is in fact a conclusion to which we should come). In other words, I remain deeply concerned about the dominance of ideal theory within value theory in analytic philosophy, but do not wish to hang my case for a nonideal approach to reproductive ethics solely on the case that ideal theory is ideology. This point helps clarify some aspects of my approach to nonideal theory, how and why I take up pragmatism as my preferred nonideal approach, and where I am likely to differ from those who reject ideal theorizing primarily for reasons such as those Mills offers.3

17.2.2  The Pragmatist Objection to Paradise Island Let us now take up a different route of critique of ideal theory that will underlie the approach I take up in the case study of reproductive ethics and LGBTQ+ family-­ making in the latter part of this paper: pragmatism as a nonideal kind of theorizing.

 I will return to this point in Sect. 17.2.3.

3

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As mentioned above, the end-state vs. transitional theory aspect of Valentini’s way of making out the ideal/nonideal distinction is the most relevant to understanding the pragmatist’s motivation toward nonideal theory.4 Deeply related to this way of making the ideal/nonideal distinction in terms of end-state vs. transitional theory is the question of the role of ends versus means in value theorizing. Pragmatism puts forth a particular way of viewing what moral inquiry is like and how and why it occurs. Drawing on John Dewey, we can view moral inquiry as fundamentally prompted by problems or conflicts we face in living; it is only when we come upon a conflict that interrupts our usual way of living that we engage in this practice (Roth 2012 391; Dewey 1957 163, 169). Moral inquiry then is not about finding “finally right” moral guidance in the form of principles, end-states, or paradise island, but rather is about overcoming the particular problems that prompted the inquiry in the first place (Roth 2012, 389, citing Dewey 1939 15–16). Elizabeth Anderson (2010) and I (2012, 389), both drawing on Dewey as background, point to medical/health problems and the way we treat them as an analogy for ethical/ moral inquiry: There are complaints, symptoms; something is wrong, but we do not know what exactly. The sense that something is wrong or dissatisfying health-wise prompts medical investigation to try to find the cause of the problem and make improvements. However, in the medical context we recognize immediately that we do not need to figure out what ideal health is in order to appropriately judge some changes we bring about in response to our investigation as improvements and others as deteriorations. Instead, we can accept a provisional diagnosis of the problem, try out potential solutions that seem fitting as solutions to the problem-as-so-conceived, and determine whether in fact these potential solutions are satisfactory. Anderson points to this model for theorizing and addressing racial inequality in the contemporary U.S. in The ideal of integration. In doing so, she argues for three reasons to begin political philosophy from nonideal theory. First, drawing on a point from Rousseau, she (3–4) suggests that “we need to tailor our principles to the motivational and cognitive capacities of human beings” and envision just institutions that are designed with our flaws, our biases, etc. in mind, such that they can help make us better, by “harness[ing] our nonmoral motives to moral ends.” Here, then, Anderson seems to agree with Mills about the need to avoid over-idealizing when it comes to modeling what humans are like and what political institutions might be like. Second, Anderson suggests that it is too easy in focusing on what an ideally just world would be like to assume that “any gaps…between our ideal and reality must be the cause of the problems in our actual world, and that the solution must therefore be to adopt policies aimed at directly closing the gaps” (4). Consider again the medial analogy; a doctor needn’t have an ideal sense of health or a health-related end-state in mind in order to help a patient overcome a health-related complaint 4  In previous work, I have referred to this aspect of ideal theory while making the case for a pragmatist account of ethical progress using the term “utopian” and “end-state” largely interchangeably, but here I will stick with Valentini’s terminology of “end-state” in order to avoid confusion (Roth 2012, 388).

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(Roth 2012, 389). In fact, such an approach can do more harm than good, potentially obscuring the actual cause of health-related complaints, as in the common experience of fat people receiving medical advice to lose weight as the solution for any aliment at all, from a sore throat (caused by strep) to chronic pain (a result of undiscovered cancer).5 Anderson (4) illuminates this point with two examples relevant to contemporary racial politics: conservatives assuming that an ideal society would be color-blind, and therefore that the solution to our racial conflict here and now is color-blind policy, and leftists who view multicultural egalitarianism as the ideal, and hence conclude that distinct but equal identity-based communities will overcome racial injustice in our society. An ideal theorist might push back here. For instance, Robeyns (345) is careful not to assent to the implausible notion that ideal theory can provide us with a direct route to paradise island/the perfectly just society; she points out that weather conditions might rule out some sailing options, and changes in landscapes might make the island altogether unreachable for some periods of time until related conditions change. Thus, ideal theory only instructs “us [about] the direction in which we should be moving” to reach the perfectly just society, but does not give us direct guidance at all (Robeyns 2008). Presumably then Robeyns can agree with Anderson that conservative color-blind advocates and multicultural leftists—at least those who arrive at their favored policy prescription through the leap from ideals to policies for here and now—are committing a serious error. I suspect that Robeyns will not find the fault here with ideal theory, but rather with misuses of ideal theory. Again, this is a point worth taking seriously from Robeyns. However, for the argument that Anderson aims to make in her book and that I want to make here, it’s not clear that this important point undermines the motivation for nonideal pragmatist moral or political inquiry. After all, if ideal theory can at best suggest a direction to move toward, then the pragmatist still has a strong case that ideal theory will play little role in overcoming moral problems, and might at times in fact backfire, as in the case of ideal weight playing an inappropriate role in medical advice. Finally, Anderson (5) suggests that we must start our political theorizing from nonideal theory inasmuch as ideal theory might lead us to not even recognize some injustices in our nonideal world, pointing to racism as a prime example. Since in the ideally just society there would be no racial positions—given that race as we would know it would presumably not exist and there would be no systemic inequalities that attach to skin color, real or supposed ancestry, and so on—ideal theory provides no obvious way to attempt to analyze what racism is and how it functions in the real world. Perhaps Robeyns might attempt to defend ideal theory here, suggesting that this would be a symptom of bad idealizations, and thus does not show the uselessness of ideal theory altogether. As I suggested in Sect. 17.2.1, I am not sure we need 5  Here we might note that the problem is not merely that the focus on ideal weight does not help solve the patient’s here-and-now medical complaint, but also that the very idea that weight itself has much to do with health can be questioned empirically. See Alison Reiheld’s contribution to this volume “Thin or thick, real or ideal: How thinking through fatness can help us see the dangers of idealized conceptions of patients, providers, health, and disease.”

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to sort out the entire ideal/nonideal theory debate in order to appreciate the significance of Anderson’s point and the value of beginning from nonideal theory when dealing with actual societal problems, particularly when structural inequalities are involved. Moreover, even if Robeyns is correct that much of the difficulty with ideal theory stems from bad idealizations, it might still be the case that idealizing in itself—abstracting away from the actual—inherently tempts us toward bad or irresponsible idealizing. As Robeyns (357, 360) herself admits, we do not currently have an obvious way to move from the idealizations of ideal theory to the work of nonideal theorizing. For all these reasons then, there is a strong case that it is preferable to begin the inquiry of moral and political philosophy with nonideal theory—at least in cases of applied value theory and/or when structural inequalities that might be obscured by ideal theory are in play. My conclusion here leaves open the question, then, of a broader assessment of nonideal vs. ideal theory in value theory generally, and in bioethics more specifically. However, given the applied nature of bioethics, and given the significance of structural inequality that runs through so many areas (one might reasonably say, all areas) of bioethics, prima facie it seems reasonable to begin with nonideal theory. This conclusion is all the stronger with regard to the particular case study I take up in Sect. 17.3, as it deals directly with a group facing systematic inequality based on sexuality and/or gender identity and presentation.

17.2.3  Pragmatic Nonideal Theory Before moving on to the case study, I need to say a bit more about what exactly a pragmatist inspired nonideal theory will look like in action. To do this, it is helpful to begin with a point Anderson makes about the role of ideals in nonideal theory. Ideals, she suggests, play the role of hypotheses to be tested in experience: “We test our ideals by putting them into practice and seeing whether they solve the problems for which they were devised…If they pass the test, this does not validate them outside of history” (6). This point hearkens back to a fundamental claim of pragmatism that contrasts with ideal theory based approaches to value theory. An ideal theory approach to moral inquiry is likely to assume that we must first get clear on our ideals or ends, and then go about solving a conflict by figuring out what policies or strategies (that is, what means) will best fulfill those ideals (or bring about our targeted ends). In this common way of thinking about moral inquiry and deliberation, ends tend to be fixed—at least once we have done the work in ideal theory of identifying an appropriate end-state or determining what is ultimately valuable, or identifying the fundamental principles of justice or morality, etc. But on a pragmatist account, it is far less obvious that ends and means work in this way. Instead, we can imagine a dynamic interaction between ends and means in which part of what moral inquiry involves is interpreting, refining, revising, and rejecting ends. Consider again the medical analogy, as Anderson (3) explains, we find symptoms, dissatisfactions, conflicts, ways of living that are not working for us; we may not know how,

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or why, or what the underlying causes of these dissatisfactions are. When we attempt to interpret these dissatisfactions within the framework of a particular kind of problem, we offer a diagnosis, and then go about searching for potential treatments. Notice that the work of diagnosing and treating are not two distinct steps in medicine, nor in value-related philosophical theorizing. Rather, the idea is that in trying out potential treatments—that is, hypothesized solutions to our problems—we are gathering empirical evidence that in turn will help us reflect upon the diagnosis and determine if in fact we think the diagnosis is correct. Diagnosing and treating, then, involve a kind of feedback system. Similarly, in the case of nonideal pragmatist moral and political theorizing ends and means are involved in a feedback system (Anderson 7). We will often have to hold steady some ends—that is, values—in order to put forth a diagnosis of a moral/political problem and try out and evaluate potential solutions; we will also find at times that our trying out solutions and failing to find them satisfactory may lead us to re-evaluate our ends (see Roth 2012, 396–7). At this point, one might question the need and motivation for a specifically pragmatist approach to ideal theory. After all, nonideal theorists motivated by something like Mills’s critique of ideal theory as ideology might accept some aspects of the pragmatist’s critique of paradise island, but without commitment to pragmatism as a broader philosophical view. What does pragmatism offer here that is distinctive? Here I want to make a few points: First, for the sake of clarity, it is worth stating explicitly that I do not take myself here to be arguing that pragmatism is the way to come at issues in bioethics or applied ethics generally in a nonideal manner. Rather, I want to explore how pragmatism offers one particularly attractive approach to bioethics, with specific attention to the case of LGBTQ+ family-making and the value of genetic relations. However, I do not aim here at showing that other nonideal approaches fail in comparison to pragmatism nor am I suggesting that there is anything special about the topic of LGBTQ+ family-making in terms of pragmatism’s value. I suspect that similar ethical analyses on unrelated bioethical topics, particularly where structural inequalities are relevant, would reveal a similar productiveness of the pragmatist approach, but I cannot explore that likelihood in this paper. Second, while I am not aiming to fully make a case for pragmatism as opposed to other forms of nonideal theorizing in bioethics, I do want to suggest that pragmatism has some strengths that should make it attractive to those moved by Mills’s concerns. For instance, Anderson’s pragmatist inspired approach to problem-­ resolving can ground a similar skepticism of ideal theory, especially with regard to cases of real-world structural inequality, as that put forth by queer, feminist, and/ or  antiracist scholars who view ideal theory as ideology. However,  a pragmatist method also makes room for questioning whether some common commitments of queer, feminist, and/or anti-racist scholars might also end up playing a problematic role as “finally right” ideals or fixed ends. Finally, there might be an interesting background question worth exploring elsewhere about how exactly to draw the distinction between specifically pragmatist nonideal ethical theorizing versus nonideal ethical theorizing  generally. What of scholars doing nonideal feminist, queer, and/or antiracist moral and political philosophy while taking onboard many of the tenets of pragmatism discussed above,

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but without embracing pragmatism wholesale? My own sense is that one who is committed to the sort of broad strokes problem-resolving view I have laid out—particularly with regard to the point about ends themselves being up for revision, modification, and so on within the process of problem-resolving—can rightly be classified as a pragmatist, at least with regard to methods of ethical inquiry and progress. In fact, I would describe my own commitments to pragmatism as less a matter of taking up a worldview or holistic philosophical approach across all types of philosophical questions, and more a commitment to a particular kind of method with regard to moral and political philosophy specifically. I leave further development of this topic for another paper. Suffice it to say, my main philosophical enemy here is ideal theorizing within bioethics, and that if it turns out that there is little distinction between the methods of queer, feminist, and antiracist nonideal bioethical theorists and the pragmatist view I am offering, this strikes me as welcome news.6

17.3  C  ase Study: LGBTQ+ Family-Making and Reproductive Technology To further illustrate the usefulness of the problem-resolving pragmatic nonideal approach within bioethics, let us consider a particular ongoing bioethical controversy in depth. The case study below will also serve to clarify the difference between ideal and nonideal approaches.

17.3.1  The Case In previous work, I have taken up ethical issues related to LGBTQ+ people’s use of various alternative reproductive practices and technologies, such as donor insemination and “reciprocal IVF” (2016, 2017). Other technologies and practices that raise similar ethical and political questions include: synthetic gametes (Murphy 2014), three person embryos (Rulli 2016), surrogacy (Roth 2016), and the use of fertility preserving technologies (such as egg or sperm freezing) by transgender people undergoing hormonal treatments and/or gender confirmation surgeries (Mitu 2016). While these cases are quite diverse in some of the ethical concerns they raise, at stake in all of them are a few central moral and political concerns, including: • “Family equality,” by which we might mean the equal political, social, and moral valuing of and respect for families of all kinds, and especially attention paid to

6  Though as I believe the case study in Sect. 17.3 will illuminate, I do not think there is such a neat correspondence between queer, feminist, and antiracist value commitments and commitment to anything like the problem-resolving method I have described above.

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overt and subtle social and legal undermining of non-traditional or alternative family types The ability of LGBTQ+ people specifically (as a subset of those who might create non-traditional or alternative families) to create families through reproduction and so to have biologically related children (of concern here will be: legal or policy prohibitions on the use of reproductive technologies, non-discrimination on the basis of sexual orientation or gender identity/expression, and the financial and logistical accessibility of technologies that facilitate such reproduction) Relatedly, the question of how—if at all—biological relations between parents and children, or in families more generally, are in fact of moral value The question of what is best (and/or at least good enough) for children The question of what a family is and what families should be

If these are the relevant ethical and political concerns at stake in the case, what will philosophical theorizing about this set of issues look like? One approach, which aligns closely with the ideal theory approach to moral and political philosophy, will begin with abstract ideals. What, one might ask, would the family/reproductive ethics version of paradise island look like?7 Once we have clear definitive values set regarding what a family is and should be, what is best for children, what is just for LGBTQ+ people, and so on, we will then have a sense of where we ought to be going to  bring our world closer to the perfectly moral/just world. This is how Robeyns, in defending a vital role for ideal theorizing, even in the midst of nonideal theory, seems to envision political philosophy being done. She takes the point of nonideal theory to be twofold. First, to “enable us to make comparisons between different social states and evaluate which one is more just than the other”, and second, to “guide our actions in order to move closer towards the ideals of society” by “offer[ing] us the theoretical foundations for figuring out what we have to do in order to move closer to that [perfectly just] society” (347). Robeyns (348) admits that this raises a deep question about how to move from ideal to nonideal theory, and that no systematic answer seems to have been put forth in the literature. Curiously, the implication here is that currently philosophers do not know how to use ideal theory to guide nonideal theorizing, yet Robeyns seems to take ideal theorizing to still be useful for doing proper nonideal theory. On this vision of how to approach LGBTQ+ family-making and the use of alternative reproductive practice and technologies, one would presumably first determine the shape of family/reproductive ethics paradise island. Then, one would use this end-state vision to help direct our efforts at transitioning in ways that lead to moral improvement (though given Robeyns’s admission above, it is unclear to what exactly this guidance might amount). Below I sketch out two ways that this ideal theorizing, in the form of determining an end-state and then looking to it for

7  The idea here is to look for “partial” ideal theory, such that we would not necessarily look for a complete picture of the ideal in all aspects of morality and justice, but might think only about one slice of morality and justice, what we can call “family/reproductive ethics.” See Robeyns 344.

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guidance, might pan out in the case of family/reproductive ethics, and point to some of the existing literature which (more or less) exemplifies this approach. Take first the position that embraces the traditional heterosexual genetically intact family as the proper ideal for family, and therefore opposes various uses of reproductive technology and alternative family-making. On such a view, non-­ traditional families are either inherently objectionable, or at least will be viewed as inferior to the ideal, and so something to be avoided if possible. On such an approach, it turns out that there is no “problem” of LGBTQ+ reproduction per se. At least, the problem is only that LGBTQ+ people reproduce at all, since such reproduction violates various moral duties toward children or perhaps is inherently morally objectionable. On this traditionalist understanding of the ideals of family and reproductive ethics, even though we have no direct route to reaching paradise island, the vague direction-pointing guidance it can give us will no doubt point us to move away from alternative family-making. Though, of course, taking onboard Robeyns’s caution about there being no direct route from where we are to paradise island, a host of questions about how best to move away from alternative family-­ making remain. One example from the reproductive ethics literature that (more or less) fits this traditionalist ideal theory approach is David Velleman’s opposition to donor-­ insemination. In a set of papers from the mid to late 2000s, Velleman (2005, 2008) suggests that knowledge of and/or a relationship with one’s genetic progenitors is a basic good necessary for identity development, and that, therefore, donor-­ insemination is immoral, since it denies offspring this basic good. Velleman goes on to argue strongly against donor-insemination—suggesting that moderate policy positions that endorse allowing donor-insemination but requiring identity release upon the offspring’s reaching the age of majority are incoherent, and embracing his view’s implication that LGBTQ+ reproduction is morally objectionable. Others taking up similar views about the moral importance of genetic ties take similarly strong stances against donor conception itself and LGBTQ+ reproduction and family equality more generally (e.g. Sommerville 2007, 2011). Notice that the traditionalist view of donor conception parallels some points in the ideal/nonideal theory debates. First, we might think this example illuminates Anderson’s third point—that some kinds of injustice can’t be accounted for on ideal theory; it seems that LGBTQ+ oppression here is simply erased once one takes onboard certain notions of what a family is, what is best for children, etc. Perhaps this conclusion comes too fast; as Robeyns might plausibly suggest, such a result is not inherent in ideal theory, but might be thought to be a matter of bad idealizations—or more simply, objectionable fundamental value assumptions—on Velleman’s part. After all, nothing in ideal theory, as we shall see with my second example below, requires one to accept the heteronormative, cissexist, white and European centric notion of family that Velleman takes for granted as the ideal of family. A different aspect of ideal theory worth drawing attention to explicitly here is the assumption of full compliance. In the case of political philosophy, full compliance involves the assumption that all or virtually all members of society are willing to

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and do meet their obligations to others. Thus, issues of compensatory justice, punishment, fair sharing of burdens among compliers in light of non-compliance, and so on are not considered in ideal theory. The view taken up by Velleman exemplifies at least some aspects of assumptions of full compliance in that it is assumed that there are no justice concerns at issue regarding whether any relevant groups, e.g. LGBTQ+ people, have a legitimate claim to reparation or compensatory justice. Similarly, there are no concerns raised about oppression, stigma, discrimination and so on regarding LGBTQ+ people or non-traditional families more generally. Indeed, inasmuch as on Velleman’s view LGBTQ+ family-making—at least when it involves reproduction—seems inherently to be a kind of harm to children, there will be little if any sense in which LGBTQ+ people can be said to be unjustly treated now or to have been historically mistreated when it comes to creating families.8 In contrast, a quite different approach to the issue of LGBTQ+ family-making— what I will call the radical approach—will begin with values about family and reproduction diametrically opposed to the traditionalist family values: e.g. that family is about love, that biology is of no moral weight, that heteronormativity (and its attendant patriarchal ideas about gender) must be overthrown, and that our culture’s emphasis on biological connections as the proper basis of family ties is a symptom of “bionormativity,” a problematic ideology that holds up genetically intact family ties as normal, natural, and superior to any other basis for family (Roth 2016, Haslanger 2012). The “problem” we face here is one of various traditionalist heteroand bionormative ideologies of family, love, and sex poisoning in our society, which leads to various kinds of unjust oppression and marginalization. Examples of views that echo some or all of the above can be found in Sally Haslanger’s “Family, ancestry, and self” and my “What does queer family equality have to do with reproductive ethics?,” both of which respond in whole or in part to Velleman’s view. Haslanger and I both suggest that Velleman overstates any case that can be made in favor of the moral importance of genetic ties and ignores the ways in which cultures construct the meaning of biological ties. Similarly, Frances Latchford’s Steeped in blood: Adoption, identity, and the meaning of family offers a far-reaching discussion of the construction of the meaning of bio-genealogical ties and the resulting undermining of the value of adoptive families. Some have taken this further, raising the question of whether use of reproductive technologies aimed at allowing genetic parenthood by LGBTQ+ people—and for those experiencing 8  Actually, I doubt this latter claim. For instance, even if we assume for the sake of argument that Velleman is correct in his moral assessment of donor conception, this would not explain nor justify the history of discrimination against LGBTQ+ people in other areas of family-making. Consider cases in which LGBTQ+ people who came out in the process of divorce from a different-sex partner lost custody of their children. Alternatively, consider anti-LGBTQ+ discrimination in adoption placements. In neither case does the traditionalist view of the value of genetic relations have any clear connection to anti-LGBTQ+ policy. Thus, it seems to me that there remains significant room to recognize historical injustice against LGBTQ+ people when it comes to parental rights and family-making even on a view like Velleman’s. (This raises an interesting question as to why traditionalist views on genetic relations so often go hand in hand with a blanket opposition to all aspects of LGBTQ+ family equality, when the former does not entail or imply the latter.)

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infertility more broadly—ought to be questioned or discouraged since it involves a misvaluing of genetic ties (e.g. Mertes 2014). I have also made an argument of this kind in ethically evaluating elective uses of reciprocal IVF, in which women-women partners use IVF in order to “share biological motherhood,” from a queer perspective (Roth 2017).9 There, I centered LGBTQ+ people, couples, and families, asking whether this practice will in the big picture be a net positive or negative for this group. My conclusion was that there is good reason to be skeptical of the elective use of reciprocal IVF at the systemic level. I saw a danger in this reproductive practice—particularly if it were to become more accessible (for instance, through insurance coverage or public funding), increasingly common, and perhaps eventually understood to be a first line approach to creating a family for women-women couples. The resulting danger is a likely contribution to bionormative attitudes, societal norms, and values that inherently undermine LGBTQ+ families. I concluded, then, that while reciprocal IVF ought to be offered to and funded for same-sex couples and LGBTQ+ people on the same basis that parallel bionormativity-complicit practices are offered to single straight people and different-sex couples, “we ought not lose sight of the possibility that some of those options bring dangers to the queer community that are not shared by the straight community in the same way” (465). I continue to hold the same basic concerns about reciprocal IVF and similar technologies as laid out above. However, I also want to question some aspects of the methodology I and others criticizing bionormativity and responding to the traditional family values approach have taken up. I notice in the extended example from my own work worrying echoes of the paradise island/ideal theorizing model. This might seem surprising since the non-traditionalist approach appears to obviously do a much better job in capturing issues related to partial compliance than the traditionalist approach. The former, after all, places concerns about systematic inequality—particularly that of LGBTQ+ people and families, but also regarding any non-traditional type of family—front and center. Yet, in other ways the radical approach still carries the mantle of ideal theorizing given that this approach still begins theorizing by first settling on a sense of what paradise island might look like in the domain of family/reproductive ethics, and then attempting to determine how best to reach that ideal. Consider the way in which the rejection of bionormativity underlies my (and Mertes’s) concerns about various reproductive technologies. If I am honest in what I imagine regarding paradise island for family/reproductive ethics issues, it is a place in which genetic ties are not weighted with any significant

9  In reciprocal IVF, one woman provides the oocytes, which are fertilized in vitro using sperm from a donor, and the resulting embryo is transferred to the other partner who then, if pregnancy occurs, gestates. By “elective,” I mean uses in which the more conventional (and also less risky, less physically burdensome, and less costly) donor insemination could in all probability successfully lead to a pregnancy for the partner who prefers to gestate; in other words, in an elective use of reciprocal IVF, additional technological intervention is employed, though the use of that technology does not make a successful pregnancy significantly more likely than it would have been using donor insemination alone.

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value. From this, I then reason that technologies like reciprocal IVF are moving in the wrong direction, because they threaten to take us farther away from paradise island—that is, to entrench us in bionormative attitudes—rather than move us toward paradise island. The interpretation of the problem we are facing is essentially the flip side of the problem as understood by Velleman. For both of us, settling on the correct abstract ideals of family delineates what the problem is: the societal failure to respect the significance of biological ties for Velleman, and the societal insistence on constructing the meaning of biological ties in ways that harm already stigmatized groups for me. Moreover, from the perspective of both camps, any kind of “middle-ground” looks dubious. A third strand of work in reproductive ethics has avoided either the traditionalist or radical perspective, and argued instead for allowing the continuation of donor conception and insisting on the value of all families, while also demanding increased regulation of donor conception practices given a presumed moral significance of genetic ties. Most common here is advocacy for the notion of open identity or non-fully anonymous donation, in which upon the age of majority donor-conceived offspring may receive identifying information about their donor. Vardit Ravitsky (2012), for example, makes the case for such an approach, and at least one U.S. sperm bank—The Sperm Bank of California—has voluntarily moved to end fully anonymous donation as an option for its donors and clients. Velleman, however, views such policies suspiciously, suggesting that any argument in favor of open identity donation is in fact an argument that supports the immorality of donor conception full stop (362, fn 3). I have developed a critique of Ravitsky’s case for identity release, suggesting that making the case for identity release as ethically necessary requires an almost impossible balancing act. One must show, on the one hand, that genetic ties do matter significantly and for non-trivial reasons; hence it would be a serious moral wrong to deny a donor-conceived person knowledge of their donor entirely. On the other hand, whatever the basis of the supposed right to know one’s genetic origins, the relevant interests of the donor-conceived cannot be so strong as to suggest that knowledge of, or a relationship with, one’s genetic progenitors is morally required (other things equal) during childhood and adolescence. This is quite a tightrope to walk and I continue to question the coherence of a position that sets out to accomplish both of these tasks simultaneously (Roth unpublished). What in the world might one say here then about the various moral and political questions at stake regarding LGBTQ+ reproduction and family-making? It looks like quite a moral impasse we have. What I want to suggest here—the entire reason for offering this extended case-study—is that changing our framing and coming at these issues from a nonideal pragmatist methodology can allow us to move beyond the impasse and make better sense of ideas like the middle-of-the-road open identity policy, which seem incoherent to folks on either of the extremes of the debate.

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17.3.2  A  Nonideal Pragmatic Approach to Family/ Reproductive Ethics How might one take up the issue of LGBTQ+ reproduction and family-making as a Deweyan pragmatist? Most basically, we come at this not by trying to determine what the relevant fundamental moral ideals are once and for all. Rather, we look at this as a yet-to-be-fully-interpreted problem we are facing and aiming to resolve. What is the not necessarily fully interpreted problem that we are facing in terms of LGBTQ+ reproduction and family-making? Notice that, in keeping with the medical analogy, we begin here with symptoms, complaints, and dissatisfactions that call out for investigation and attempted diagnosis. From this perspective, there are a number of overlapping and perhaps conflicting relevant “symptoms.” Perhaps most glaringly, LGBTQ+ people have faced a long history of discrimination and marginalization in the domain of family-making, and continue to face many different kinds of obstacles when it comes to becoming parents. Also of extreme significant is the experience of donor-conceived people, and particularly the movement some have begun to create more regulation around donor-conception (especially with regard to the rights of donor-conceived people to “know their origins”). The stigmas many adoptive families experience and regularly push back against will also be central here. Notice that what is not in play here is the abstract moral theorizing of philosophers and bioethicists trying to sort out fundamental moral ideals or raising esoteric worries about possible negative implications of new reproductive technologies. This is not to say, of course, that such theorizing is completely inappropriate or irrelevant to the issues in question. Rather, the pragmatist nonideal theory approach can helpfully reframe what such scholarship is—or should be—doing: instead of sketching out competing forms of paradise island, they should be sketching out different plausible diagnoses of the underlying problem that is responsible for the difficulties, and then offering provisional treatments—to be tested out in experience—that aim to resolve the problem so diagnosed. This sort of reframing can illuminate an alternative path to either the traditionalist or radical, which exemplifies nonideal theory on all three of Valentini’s ways of marking the ideal/nonideal distinction as discussed in Sect. 17.2. Recall Valentini’s first way of marking the distinction is in terms of full versus partial compliance. By reframing the issue of LGBTQ+ reproduction in terms of reported difficulties, symptoms, or conflicts, we can see clearly the importance of attention to partial compliance; given the history and potentially ongoing discrimination against LGBTQ+ people, questions of compensatory justice must factor heavily into any plausible interpretation of the problem and potential resolution. For example, consider a point that has been stressed by some commentators in discussion of state-­funding or state-required private insurance funding of reproductive technologies—one might think that LGBTQ+ people and same-sex couples have a stronger claim to such funding than single straight people and different-sex couples as a way to counteract and/or compensate for heteronormative structural inequality and discrimination (McTernan 2015). This is a point that gets little if any recognition by

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either the traditionalist or radical approaches, presumably, because they are overly focused on paradise island, which makes no room for questions of compensatory justice or how to overcome already existing structural inequalities.10 Valentini’s second way of marking the ideal/nonideal distinction has to do with “feasibility” considerations. Ideal theory is utopian, while nonideal theory is—to a greater or lesser extent—realistic in terms of the role of factual constraints, having to do with the human condition and perhaps human psychological and moral propensities. In the subfield of reproductive ethics—and with regard to the particular issue of LGBTQ+ family-making and use of reproductive technologies—relevant “feasibility” considerations might focus on questions about the sorts of moral sentiments we have, the ways in which we are influenced by our social and cultural environment, the pliability of human psychology and moral imagination, and so on. More specifically, we might think there are important feasibility considerations to take up in relation to the question of how children can be well-raised and the emotional and social consequences of different kinds of reproductive choices and familial situations. For example, one taking up a radical anti-bionormative perspective at the level of fundamental moral ideals risks failing to take seriously whether the average donor-conceived offspring—being raised in a heavily bionormative culture—is likely to fare well in a situation in which they have no knowledge of their genetic progenitors. At issue here is not any truth about the actual fundamental moral importance of genetic ties, but rather a question of whether the average donor-­ conceived person or potential parent considering using reproductive technology to procreate can easily divest themselves of emotional and social investment in biological relations given the background circumstances of our culture.11 Finally, Valentini’s third way of distinguishing ideal and nonideal theory appeals to the notion of an end-state vs. a transitional theory. This is the aspect of the ideal/ nonideal theory distinction that I identified at the outset of the paper as most important for the pragmatist nonideal theory approach I advocate. Let us recall, then, some of the basic tenets of pragmatist nonideal theory relevant to the end-state vs. transitional theory distinction. The pragmatist holds that: • We can make improvements—we can resolve moral problems—without first determining what a “utopian” end-state might look like • Ideals ought not be conceived as fixed and unchanging, but rather as working hypotheses, which must be vindicated through experience • Beginning with assumed fixed ideals—e.g. identifying paradise island—does not offer us any direct guidance as to what to do here and now to make improvements and in fact looking to paradise island might be counter-productive and impede our efforts at overcoming our here-and-now problems

 In contrast, those focused on paradise island might do just fine at envisioning a world without structural inequalities in the first place. 11  I think that proponents of the radical approach like Haslanger and myself do pay some attention to this kind of consideration. However, taking on a pragmatist nonideal approach to theorizing about these issues makes the need to pay attention here much more explicit. 10

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The end-state aspect of ideal theory leads us to focus on paradise island. We seek an answer to the deep question of whether and how genetic relations actually matter morally, what is a family, and so on. This focus, then, pushes us toward the more extreme traditionalist and radical positions, rather than a middle-ground position, which looks problematically wishy-washy or unjustified. In contrast, when we keep in mind that any ideals of family we take up are only provisional and must be tested in experience, we might find ourselves moving closer to the middle and away from those extremes. After all, what we are doing in moral inquiry on a pragmatist understanding is attempting to overcome felt difficulties and dissatisfactions. We offer a provisional interpretation of what those dissatisfactions consist in and then attempt to put forth a solution that can improve the situation. A position that attempts to provide some knowledge of one’s origins to donor-conceived people while also allowing for the wide use of donor-conception by people looking to create alternative families— especially people who have faced significant family-related discrimination—looks like quite a good provisional “treatment” for the dissatisfactions raised above. Whereas, the idea of ending all donor-conception or trying to overcome bionormative uses of reproductive technology seem very far removed from the reported dissatisfactions. I do not mean to suggest that the middle-of-the-road position is better than the positions on the extremes merely because it is middle-of-the-road. The point is not about compromise, but rather what seems to be the best kind of hypothesis to test out in a provisional way to diagnosis and solve the problem we are facing. To my mind, the pragmatist framing offers a kind of gestalt shift. When I view these issues through the lens of paradise island, I am seduced immediately into the radical point of view as the most convincing position about what is in fact truly valuable about genetic ties and family. Yet, when I ask how to go about making improvements for the felt dissatisfactions described above, the values I find most attractive at the level of paradise island do not seem to enter the picture. When thinking like a pragmatist, I resist what Anderson cautions against—the urge to assume that the solution to our problems here and now lies in the gap between the ideal and the actual. Perhaps it does, but perhaps it does not. A final implication of taking on a pragmatist nonideal perspective is the emphasis on trying out approaches to problem-resolving and seeking feedback from the world. In a sense then, what the pragmatist nonideal theorist calls for with regard to family/reproductive ethics is a grand social experiment. Of interest here is the fact that the terminology of “grand social experiment” is generally employed pejoratively, to describe situations in which society has, from the speaker’s point of view, leaped into a new practice or way of life that is ultimately harmful; this is sometimes suggested about the situation of donor-conceived children as well as children of LGBTQ+ parents and same-sex couples. This pejorative use perhaps overstates the case here. Significant feedback from the world has already been sought and collected about the situation of children raised by LGBTQ+ parents, and the results are no longer controversial within the going social science: the kids are alright; research on donor-offspring is less developed, but there is significant overlap between

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children raised by LGBTQ+ and donor-conceived offspring (see Roth 2016 for discussion). The nonideal pragmatist approach advocates even more research on such issues.

17.4  Conclusion In this paper, I have aimed to offer a general lay of the land in terms of the ideal/ nonideal theory debate, to offer a more specific pragmatist interpretation of nonideal theory, and to show how that pragmatic nonideal theory can be productive within the particular subfield of bioethics focused on reproductive ethics and family-­ making, especially with regard to LGBTQ+ individuals and same-sex couples. The ultimate pay-off of taking up the pragmatic nonideal approach within this particular bioethical controversy involves at least the following. First, we are able to make better sense of “middle-of-the-road” ethical positions that might otherwise be deemed incoherent, since from the perspective of trying to overcome felt dissatisfactions, such policy changes seem more plausible hypotheses than what is offered by the traditionalist or radical camps. Second, we ground the importance of trying out different types of practices and looking for feedback from the world to help us revise our values, reinterpret the problems we face, and ultimately be more able to make moral improvements and overcome conflicts and difficulties we face in the area of reproductive ethics in satisfying ways. The hope and claim of the pragmatist is that we can do all of this while leaving paradise island and the assumption that we need to appeal to it to engage in adequate value theorizing behind.

References Anderson, Elizabeth. 2010. The imperative of integration. Princeton: Princeton University Press. Dewey, John. 1939. Theory of valuation. In International encyclopedia of unified science, vol. 2. Chicago: Chicago University Press. ———. 1957. Reconstruction in philosophy. Boston: Beacon Press. Haslanger, Sally. 2012. Family, ancestry, and self: What is the moral significance of biological ties? In Resisting reality: Social construction and social critique, 158–182. Oxford: Oxford University Press. Latchford, Frances. 2019. Steeped in blood: Adoption, identity, and the meaning of family. Montreal: McGill-Queens. McTernan, E. 2015. Should fertility treatment be state funded? Journal of Applied Philosophy 32: 227–240. https://doi.org/10.1111/japp.12091. Mertes, H. 2014. Gamete derivation from stem cells: Revisiting the concept of genetic parenthood. Journal of Medical Ethics 40: 744–747. Mills, Charles. 2005. Ideal theory as ideology. Hypatia 20: 165–184.

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Mitu, Khadija. 2016. Transgender reproductive choice and fertility preservation. American Medical Association Journal of Ethics. 18: 1119–1125. https://doi.org/10.1001/journalofethics.2016.18.11.pfor2-­1611. Murphy, Timothy. 2014. The meaning of synthetic gametes for gay and lesbian people and bioethics too. Journal of Medical Ethics 40: 762–765. Ravitsky, Vardit. 2012. Autonomous choice and the right to know one’s genetic origins. Hastings Center Report 44: 36–37. https://doi.org/10.1002/hast.286. Rawls, John. 1999. A theory of justice. revised ed. Cambridge, MA: Harvard University Press. Robeyns, Ingrid. 2008. Ideal theory in theory and practice. Social Theory and Practice 35: 341–362. Roth, Amanda. 2012. Ethical progress as problem-resolving. The Journal of Political Philosophy 20: 384–406. ———. 2016. What does queer family equality have to do with reproductive ethics? International Journal of Feminist Approaches to Bioethics 9: 27–67. ———. 2017. (Queer) family values and ‘reciprocal IVF’: What difference does sexual identity make? Kennedy Institute of Ethics Journal 27: 443–473. ———. 2018. (Feminist) abortion ethics and fetal moral status. In The Bloomsbury companion to analytic feminism, ed. Pieranna Garavasco, 394–422. London: Bloomsbury. ———. n.d. Donor decisions: On making meaning and choosing for a child. Unpublished. Rulli, Tina. 2016. What is the value of three-parent IVF? Hastings Center Report 46: 1–10. https:// doi.org/10.1002/hast.594. Somerville, Margaret. 2007. Children’s human rights and unlinking child–parent biological bonds with adoption, same-sex marriage and new reproductive technologies. Journal of Family Studies 13: 179–201. https://doi.org/10.5172/jfs.327.13.2.179. ———. 2011. Donor conception and children’s rights: ‘First, do no harm’. Canadian Medical Association Journal 183: 280. https://doi.org/10.1503/cmaj.101388.Medline:21220438. Tessman, Lisa. 2009. Feminist ethics and social and political philosophy: Theorizing the non-­ ideal. London: Springer. Thomson, Judith Jarvis. 1971. A defense of abortion. Philosophy and Public Affairs 1: 47–66. Valentini, Laura. 2012. Ideal vs. non-ideal theory: A conceptual map. Philosophy Compass 7: 654–664. Velleman, David. 2005. Family history. Philosophical Papers 34 (3): 357–378. ———. 2008. Persons in prospect II: The gift of life. Philosophy and Public Affairs 36: 245–266.

Chapter 18

Huntington’s Disease Testing in a Nonideal World Marisola Xhelili Ciaccio and Drew Dumaine

In this paper we argue that current institutional practices of genetic testing for incurable hereditary diseases— in this case, Huntington’s Disease (HD)— require reform with the goal of increasing patients’ freedom to live the kinds of lives they value. We start by providing an overview of HD and its general disease progression. Then we discuss the discovery of the Huntington’s genetic markers, the subsequent creation of a genetic test for potential carriers of HD, and current utilization of this test by those at risk. Given that utilization of the HD test is surprisingly low, we then examine why patients at risk may decide to test, or alternatively, why they may choose to forgo testing in many cases, and the role of genetic counseling in guiding those decisions. We then draw from Sen’s work on nonideal theory to probe at the myriad overlapping challenges facing the practice of genetic counseling and testing for HD, and use it to analyze the particular ways institutions create barriers to patient autonomy and fail in their role as promoters of justice. Finally, we consider possible practices from the nonideal conditions we analyze that could reduce institutional barriers and promote the freedom of HD affected individuals to live good lives.

18.1  Huntington’s Disease Huntington’s Disease (HD) is a hereditary neurodegenerative disorder estimated to affect 1 in 15,000 people in the United States. It is inherited in an autosomal dominant fashion, meaning that each child of a parent affected by HD has a 50% chance of inheriting the disease-causing gene (Huntington’s disease society of America 2016). Symptoms of HD typically appear between the ages of 35 and 44– although 5% are M. Xhelili Ciaccio (*) · D. Dumaine Marquette University, Milwaukee, WI, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 E. Victor, L. K. Guidry-Grimes (eds.), Applying Nonideal Theory to Bioethics, Philosophy and Medicine 139, https://doi.org/10.1007/978-3-030-72503-7_18

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affected as juveniles and 25% are affected after age 50. Though HD symptoms vary widely, they generally begin in subtle ways and eventually progress to more debilitating and finally fatal ones, spanning between 10 and 25 years (HD guidelines). Early symptoms of HD can include depression, behavioral changes, memory lapses, twitching, fidgeting, and clumsiness. As the disease progresses, involuntary movements referred to as chorea begin to set in, along with loss of broad motor control, speaking and swallowing difficulties, and severe cognitive decline. The later stages of HD leave the patient bedridden and entirely dependent on others, finally leading to death from malnutrition or choking (due to the loss of ability to swallow). People diagnosed with HD also have an unusually high suicide rate, approximately 13%, and one of the highest suicide rates compared to other neurodegenerative diseases (Wetzel et al. 2011).

18.2  Genetic Testing for Huntington’s Disease Due to two major breakthroughs in genetic research— one in 1983 that identified genetic markers and enabled linkage testing, and another in 1993 that identified the cytosine, adenine, and guanine (CAG) repeat expansion and led to the creation of the blood test used today— it has become possible for those at risk or affected by HD to seek prenatal, predictive, or diagnostic genetic testing (Nance 2016). However, the availability of the blood test has not demonstrated a significant uptake of genetic testing for HD, nor has it demonstrated a reduction in the prevalence of HD. Scientists and medical professionals have expressed puzzlement as to why a greater number of people at risk for HD do not pursue testing. This puzzlement is related to a self-reporting survey wherein more than 75% of participants indicated they would pursue testing if one became available (Kessler 1987). Yet the actual uptake of testing in the US is less than 10% (and dropping) of the affected population, with prenatal testing being even lower (Nance 2016). Why, then, is there such a discrepancy between the reported likelihood of getting tested and the actual state of things? Quaid et al. speculate that emotional and unconscious psychological processes are at play that complicate any one decision to get tested, at least with respect to testing in order to make reproductive decisions (2010). Alice Wexler explores this at length in her memoir, which details her life at risk for HD and the search for the genetic test. “The psychologist Schlomo Breznitz said that the moment when a predictive test becomes a real possibility marks a decisive emotional shift for the person at risk for Huntington’s disease— and perhaps for any fatal, untreatable illness. At that moment the anticipation changes. And from the moment until the actual taking of the test is also a distinct time, quite unlike the period when one can fantasize about a test that does not yet exist” (Wexler 1996). There may very well be a difference in how we psychologically approach the theoretical ability to get tested and the actual decision to do so when confronted with it. This difference is important with regard to how we evaluate HD related practices.

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In this paper, we emphasize the importance of leading with the actual state of things, and drawing conclusions and proposing solutions on this basis. In other words: we propose leading with the fact that the vast majority of people at risk for HD do not pursue testing even with the existence of a genetic test, rather than early reports that they would pursue testing should one become available. Paying attention to what people are doing in practice rather than in theory is essential if we want to develop policies that are particularly pertinent to the population in question. For example, the fact of the matter is that, despite the expert-touted logic of getting tested in order to make risk-free reproductive decisions, those at risk for HD make varied reproductive choices, most often without seeking testing themselves even when they are at risk for HD (Quaid et al. 2010). It is, notably, much more difficult to make sense of this and other (seeming) contradictions than to begin with a story where the intentions of the patients cleanly align with the rationale of experts. But this is where we find ourselves, and it is from this basis that we must begin our assessments.

18.3  Deciding to Test, or Not It is unclear why the majority of people at risk for HD never pursue testing. But there is a small amount of literature that seeks to clarify why some people either choose not to test or never consider getting tested at all. Though the majority of these studies are conducted in Canada and the UK, the findings are consistent with the small amount of literature coming from the US. Importantly, these studies show that in addition to the personally contextual reasons to forgo testing, there are also institutional barriers that make it difficult or undesirable for people at risk for HD to pursue predictive testing. As noted previously, of the approximately 100,000–200,000 individuals at risk of having HD in the US only a small percentage (5–25%) will ultimately engage in predictive testing for HD (Hawkins and Hayden 2011). According to Holman et al. the most common motivations for those who seek presymptomatic testing are to gain knowledge of their HD status and to be able to plan for their future (2018). Further, Holman et al. found that the participants’ age correlated with specific motivations for testing. Younger study participants were more likely to pursue testing in order to learn their HD status and/or to use their HD status as part of their decision-­ making process about future educational and professional plans (2018). Older participants were more likely to cite assessing their children’s risk as motivation for testing (2018). Those who choose to forgo testing cite a variety of reasons, many of which are the result of poor policy, institutional barriers, or a lack of resources. Among the cited reasons that people forgo testing are: 1. Lack of treatment or cure for HD to serve as a motivating reason for getting tested (Hawkins and Hayden 2011)

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2. Personal reasons, such as one’s perceived ability to cope with knowledge of diagnosis (Hawkins and Hayden 2011) 3. Lack of appropriate guidance from primary care physicians (Etchegary 2011) 4. Cost, mostly due to lack of coverage by most major health insurance companies (Divion et al. 2013; Prince 2015) 5. Difficulty accessing ongoing appropriate genetic counseling (Hawkins and Hayden 2011) 6. Fear of discrimination and exclusion if they test positive (Nance 2016) 7. Fear of being denied end of life care and life insurance (Parkman et al. 2015) The first cited reason is an interesting case of how the rates of testing might change with respect to potential advances in HD treatment. There are currently clinical trials making use of medication to target the toxic protein that causes HD symptoms as a way of delaying symptoms, and gene silencing technology that could essentially cure HD. The potential of these treatments to be effective and become more widely available as the cost of the associated technology decreases could very well cause an increase in the number of people who choose to get tested, with the direct goal of getting treated. But we are not there, nor do we know whether we will get there anytime soon with any real degree of success. Thus, the second cited reason remains a highly significant personal deterrent to testing, one which also has implications for institutions, and which we discuss in the following section. Importantly, the rest of the cited reasons that people do not seek testing point to institutional gaps and barriers rather than purely psychological ones, though the two are of course connected.1 One study by Etchegary (2011) looks at the experiences of HD patients and families affected by HD in eastern Canada. This study finds three main areas of concern for those at risk for HD: lack of individualized care for their relative, limited availability of community resources, and inadequate HD knowledge in healthcare professionals (Skirton et al. 2010). People at risk for HD are more likely to approach testing in a positive light if they have seen loved ones go through the process of their illness with support and individualized care (Wexler 1996), a finding that does not bode well for testing uptake of currently at-risk individuals who witness the dearth of support provided to their affected family member. Family members not only notice when there is no support, they end up being the ones who bear the heaviest burdens once the illness progresses, having to navigate the complications of their own risk status alongside having to care for ill family members. Several articles have made note of the fact that HD is truly a family and not merely an individual challenge. Sobel and Cowan (2000) make the case that genetic testing is a family instead of an individual matter and urge for family involvement as well as family support through the process. Nance (2007) attempts to capture the imperative role of the family as a support

1  The majority of the cited reasons that people forego HD testing exemplify what Neitzke asserts in Chap. 4 in this volume (“Critical Theoretical Methodology for Nonideal Contributions to Bioethics”): what appear to be moral dilemmas in health care are often “systemic dysfunctions in health care’s material production.”

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system in what they call the “HD molecule” model of care: the person with HD (abbreviated as pHD) is at the center, surrounded by immediate family, then branches out to other domains which include medical care, education, and research (Nance 2007). Placing the family as immediately closer to the patient also places them in an inner circle; while they absorb most of the daily difficulties of caring for an affected family member, being in the middle implies that the outer circle of support pertains not only to the patient but to the family. There is indeed evidence to show that when patients and their families are supported, all are better able to cope with the challenges of HD (Brandt et al. 1989). Support includes testing that is performed in a clinical context, which includes education about the disease and the process of getting tested, genetic counseling prior to testing, continuous psychological support, and regular follow-up visits. The fact that members of HD affected families cite the lack of this individualized type of support to be one of their major life concerns requires special attention, as it negatively impacts the people who are supposed to care for the ill patient in addition to the patient herself, making the network of support exceedingly weak. Another point of concern is the fact that the care needed for HD is quite specialized and outside the purview of primary care practitioners. “Despite the growing importance of genetics in primary care, studies report limited genetics knowledge and confidence of many PCPs, finding few or incorrect referrals to genetic counseling services, missed genetic diagnoses, and limited preparation of patients who are referred to genetic services” (Etchegary  2011). Nance also speaks to insufficient  knowledge among primary care physicians that impacts the ability to get tested, especially for those who are at risk but may not necessarily be showing symptoms: “Many HD families do not have access to skilled HD care teams. Because of the dearth of evidence-based research publications supporting the use of one or another treatment, nonspecialists lack direction as they try to care for patients with this uncommon disease, and both patient and physician can become frustrated and negativistic” (Nance 2007). In addition to the lack of expert knowledge among primary care physicians, there are also the prohibitive costs of being tested and securing one’s HD diagnosis. This generally includes a multi-visit process that (especially if the person at risk is not displaying symptoms) does not fall under the umbrella of essential or preventative care and is therefore not covered by most types of health insurance plans in the US. The Genetic Information Nondiscrimination Act (GINA) passed in 2008 makes it illegal to deny health coverage related to having the condition, but it does not mandate coverage for testing in order to find out if one has the condition.2 The ability to test asymptomatic individuals for conditions like HD has “created a liminal 2  And it is precisely these costs that are prohibitive. GINA is relevant for those who have already tested positive for HD, but not for those who are in need of testing. Additionally, someone with a family history of HD might wish to use PGD, which would make it possible for people with HD to have children without putting them at risk, but not know their own genetic status. Each PGD attempt costs around $15,000 and is often not covered by insurance, regardless of whether or not one has secured an HD diagnosis.

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state, between cultural and bureaucratic concepts of health and illness” (Prince 2015). Currently, the US insurance and health care systems are not set up to deal with this new liminal state and thus patients face many challenges in trying to access their own genetic information without incurring great expense. “Without mandated coverage of interventions, the promise of genomic testing as a tool for prevention is blunted and a disparate healthcare system is further entrenched in our society” (Prince 2015). This bureaucratically “liminal state” is interesting in that it matches the phenomenologically liminal state of being at risk for HD.3 Additionally, while someone cannot be denied health insurance if one tests positive for the disease, they can legally be denied end of life care and life insurance, both of which are essential (perhaps more essential than health insurance) for HD sufferers in the later stages of disease and to their families after they are deceased. Testimonies of people who forgo testing reveal a concern and anxiety about losing these necessary protections if they test positive, which has led to the establishment of anonymous testing by a small number of institutions. But even in the rare case when someone has access to anonymous testing, there is no guarantee that they will qualify for end of life care or life insurance.4

18.4  The Role of Genetic Counseling Professional efforts to counsel and educate patients for the management of HD began in 1955, several decades before the discovery of the HD gene and the subsequent genetic test for HD (Nance 2016). At this time, noting that counseling— or education, as was the preferred term— was the only way professionals could help manage the disease, John Pearson and Sheldon Reed both argued in favor of establishing genetic counseling as part of an effort to educate those affected with HD about the dangers of procreation when affected (Nance 2016). In the 1970s, genetic counseling efforts also took on the goal of increasing publicity about the disease, also related to efforts of dissuading those at risk from reproducing (Nance 2016). This was the approach to managing HD prior to the discovery of the genetic test, but without success— it did not lead to a decrease in the prevalence of HD. In the past couple of decades, organizations such as the HDSA have developed counseling protocols with a patient-centered model of care in mind, and genetic counseling in particular has moved away from the public health model, which was strongly influenced by the eugenics movement. After the discoveries that led to the development 3  “Phenomenologically liminal” refers to the time in which a patient may suspect they harbor a disease, but lack confirmation via genetic testing. For some people this state is ongoing for years due to a prominent family history of a disease, while for others it may be a state that they experience for a short time between knowledge of a disease risk and access to genetic testing. 4  Most insurance companies conduct their own health check prior to insuring, and genetic counselors generally discourage patients from anonymous testing because they prioritize the benefit of having a complete medical history in order to provide adequate health care.

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of the HD test in 1983, the goal of counseling changed to match the circumstances; people could now pursue predictive testing and theoretically choose, on their own, to not procreate if they tested positive. However, despite these developments in genetic counseling and the existence of a genetic test for HD, there is still no indication of a reduction in the prevalence of HD— recall that the uptake of genetic testing among at risk populations is around 10%, with prenatal testing even lower. So neither the dated approach from the 1950s nor the current approach to counseling can be said to have contributed to a reduction in the prevalence of the disease (Nance 2016). Further, as it stands, there are no national laws regarding predictive testing for HD. In the absence of any official or enforceable regulations, guidelines for genetic testing have been developed by the Huntington’s Disease Society of America (HDSA), the Huntington’s Disease Society of Canada, and the International Huntington Association, in conjunction with the World Federation of Neurology Research Group on Huntington’s Chorea. The guidelines provided by these organizations all recognize the importance of genetic counseling and its role in helping patients manage a diagnosis with limited treatments and no cure. This does not, however, mean that there are clearly stated or precise goals with regard to genetic counseling, nor are these guidelines mandatory for all practitioners to follow. Medical practitioners can exercise discretion in deciding whether or not and to what extent to follow them, but more problematically, they are part of a disjointed network of services (including governmental and private insurance) that take divergent approaches with regard to the disease and the affected individuals.5 As a result, there is no one streamlined process for being tested for HD; despite existing medical guidelines for diagnosing and treating HD symptoms, it is up to genetic counselors to educate and assist individuals seeking testing through the available testing processes within the patient’s local area. For some patients and counselors this process can be quite involved and onerous—it ultimately depends upon how HD-literate the patient’s primary doctor is and what HD resources and centers are available. These are just a few of the challenges facing genetic counselors today. As the practice of genetic counseling continues to grow and greater support for the field is provided, the challenges will also shift. Nance (2016) notes several ongoing and potential challenges for the field of genetic counseling: (1) reducing inequity in genetic counseling and testing; (2) helping potential patients differentiate between genetic information and counseling; (3) improving the quality of genetic services; and (4) preparing for a potential influx of patients as genetic technologies and treatments continue to advance. The first challenge is complex and this paper is an attempt to address the existing inequities in genetic counseling. As noted previously, genetic counseling, if available, generally requires a referral from a knowledgeable physician and can be prohibitively expensive depending upon an individual’s insurance. Additionally, Medicare patients face further inequity due to a 2-year waiting

5  Some testing institutions even consider the guidelines to be too onerous and may often choose simpler paths toward testing in order to make the process more accessible for patients.

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period after their HD disability is determined (Divion et al. 2013). Thus, “Medicaid-­ eligible patients may have substantially worse disease progression when compared with/to commercial-insurance patients” (Divion et al. 2013). Challenge one also overlaps with challenge number three due to inequities sometimes reflecting a lack of genetic services, a lack of knowledge regarding available genetic services on the part of physicians, or a lack of genetic understanding and/or genetic interpretation skills. Klitzman et  al. (2013) found that physicians play a large role in who decides to pursue genetic testing, but also that physician knowledge of genetics is generally low. What this means is that physicians can act as gatekeepers to genetic testing, but gatekeeping can go both ways and some physicians can be a barrier for patients who could benefit from genetic testing (Klitzman et al. 2013). This is especially problematic considering that one study found that physicians whose practices primarily treat minority patients are less likely to have ordered or referred patients for genetic testing or counseling (Klitzman et al. 2013). The second challenge is the direct result of widely available internet access and the development of direct-to-consumer genetic testing. Between these two developments the patient has easy access to information about symptoms, diseases, disease progression, and the ability to pursue some genetic testing without the involvement of a physician or genetic counselor. Thus, genetic information is widely available, but for most people amassing genetic information is not a good substitute for genetic counseling. In the case of direct-to-consumer testing, the FDA advocates for genetic counseling due to the complexity of understanding and interpreting genetic information: There can also be disagreements in the clinical community about the role that different genetic variants have in contributing to disease, and new information is being learned every day. There are tens of thousands of variants and varying information available to determine whether those variants are relevant to whether a person may get a disease or condition. Not all variants that contribute to a person’s risk of getting a disease or condition may be known, so it is important that consumers understand that a negative result means they still may be at risk for a particular disease or condition. Not all direct-to-consumer genetic test companies test for the same set of variants, and therefore may provide different results for the same disease or condition. Therefore, consumers must use their judgment when ordering and interpreting their results from these tests. Consumers should consider discussing their results with a genetic counselor or a qualified health care provider to better understand the clinical relevance of the result to their own health (US Food and Drug Administration 2018).

However, it is unclear who should be educating patients about the difference between genetic information and counseling. Which brings us to the third challenge that Nance identified for genetic counseling: quality of services. Ideally the necessary education would be under the purview of primary care physicians, but as we have already noted the majority of physicians lack adequate genetic knowledge. Further, “[M]ost (95%) believe that physician responsibilities include counseling patients about genetic testing, but only 51% have time to do so [Escher and Sappino 2000; Menasha et al. 2000], and among psychiatrists, fewer than 25% felt prepared to engage in counseling [Finn et al. 2005]” (Klitzman et al. 2013). Such statistics paint a bleak view for improving the quality of genetic education and testing

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services, but it would be relatively easy to educate physicians about available genetic counseling options in their area and how to refer patients in need of genetic information and counseling to them. This approach would have the benefit of helping patients receive necessary referrals while also not imposing a significant burden on the primary care physician. Finally, with regard to the fourth challenge mentioned: as genetic science and technology advance, the ability to create therapies for a multitude of diseases looms in the near future. Nance predicts that with the advent of such therapies, patients will begin to seek genetic testing at a much higher rate in order to be approved for research and drug trials (2016). How will these patients gain access to genetic information and counseling? This is a real concern given that the field of genetic counseling has struggled to match its growth to that of genetic testing options (Stoll et al. 2018). We turn now to Sen’s use of nonideal theory to further explore these challenges and inform our position regarding improving patient experiences with pursuing genetic services.

18.5  Sen’s Approach to Justice We make use of Amartya Sen’s realizations-oriented approach to justice6 as spelled out in Development as freedom and The idea of justice, to develop an ethical critique of the current institutional practices around HD, as well as to make proposals for a more just system of care that values the lives and enhances the freedom of HD patients. In The idea of justice, Sen does not offer a theory of justice but rather a set of claims about how we can and must think about justice, recognizing that we always begin in and work through nonideal conditions, both in generating our ideas about what justice looks like and in carrying out the tasks of justice. This approach stands in direct contrast to transcendental theories of justice such as that of John Rawls, which begin with an ideal top-down understanding of what justice ought to be. Instead of leading with the ideal of a perfectly just society, Sen asserts, it is possible and sufficient to achieve shared partial orderings when comparing the relative justice of situations (Sen 2011). So we can be comparative of actual justice situations without needing an ideal to get off the ground. Sen also suggests that we must think pluralistically instead of making our evaluations of justice from a single dimension, because the objects and states we have reason to value are diverse, and we can assess them separately and together along multiple dimensions of assessment. Instead of adhering to a strict institutionalism—which holds that we know the perfectly just society when we have decided the basic structure of society—we should instead focus on social realizations: we must base our comparative justice

6  We are greatly appreciative of Margaret Urban Walker’s assistance in working through Sen’s material.

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judgments on the actual ways that institutions and practices will work out in comprehensive outcomes in the world with actual human behavior (Sen 2011). Sen also argues that part of how we come to understand justice is through the practical experience of a sense of injustice, and that people’s sense of injustice can be instructive and must be assessed by impartial and inclusive public reason as part of the practice of justice. Given that we always begin from imperfect, nonideal conditions, we should also not assume at any given point that we already possess enough of an understanding of justice and injustice to engage in reasoning about the perfectly just society. The best we can do is make comparative justice claims based on actual human behavior. For the purposes of assessing advantage and disadvantage (or equality/inequality) in social realizations, we need to focus on capabilities. Our having capabilities is what justice must aim for— they are the ends by which progress and development should be judged. Capabilities, as Sen describes them in Development as freedom, are substantive freedoms (things people have the ability, resources, and opportunities to actually do, if they choose) to lead the kinds of lives people have reason to value. We can also understand capabilities as sets of valuable “functionings” that humans have effective access to, with functionings being “states of being and doing that a person can undertake” (Wells 2019). Examples of functionings include states like being healthy, being educated, or being depressed, as well as “doings” like voting in an election, eating meat, or getting genetic testing. Capabilities are then a person’s actual freedoms/opportunities to achieve various functionings. In order for functionings to be realized, they must be made effectively possible, and this is what capabilities capture; for a person to be capable of voting or get genetic testing they must be socially guaranteed the opportunities to achieve such functionings, so that they are not empty ideals but practically realizable states and actions. We therefore have capabilities to the extent that we can convert resources— like income, commodities, opportunities, or rights— into ways of functioning that we value.7 Notably, the ability to convert resources into functionings differs among human beings because of personal (such as health, disability, age, sex) and social (such as education, vulnerability to violence) differences. Though this may be the case, Sen argues that a “plurality of institutions” — including a democratic government, educational institutions, and the healthcare system— can protect and enhance human freedoms so understood (Sen 1999). This is what it means for institutions to promote human freedom and work along a realizations-oriented understanding of justice. Institutions can do this by promoting political freedoms (i.e. to determine who should govern, to freely express ideas, to vote, to be represented), economic opportunities, social opportunities (for education, health care, recognition and respect), transparency guarantees, and protective security (Sen 1999).

7  Capabilities are both instrumentally and intrinsically valuable, both as a means for individuals to develop and extend their freedom, and also as ends to enjoy in-themselves.

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So the goal of justice is the development of the freedom of human beings— which is the development of capabilities so that they may live the lives they have reason to value, if they choose. While Sen’s idea of justice recognizes the important role of experts and institutions in the practice of justice, it places particular importance on public discussion; it is a model that demands effective processes of public reasoning and democratic procedures of decision-making (Wells 2019). Human beings should be involved in public discussion and democratic processes to set social priorities for developing capabilities and deciding on strategies to measure the development of capabilities (Sen 1999). Though there is no unique, perfect scheme for ordering capabilities by importance, the practice of figuring out what matters and in what ways it matters should be a process that includes and is centered around the actual people whose quality of life and freedom is at stake in these matters. This is part of what it means to think pluralistically in making evaluations of justice, inclusive of the diverse objects and states we have reason to value, and that can be assessed separately and together along multiple dimensions.

18.6  Accounting for the Lived Experience of HD Patients The history of HD-related genetic education and many current institutional practices reveal undercurrents of injustice that undercut rather than promote the freedom and quality of life of people affected by HD. One underlying belief (which is not explicitly expressed but is explicitly felt by those affected) is that the lives of those with or at risk for HD do not have the same value as those of unaffected individuals. It is most plainly evident in the historic argument that people affected with HD should not reproduce if they are carriers. However rational this position appears to be from the lens of public health, it reveals the priorities of a select set of stakeholders— primarily the medical experts whose logic leads to one “right” choice for all those affected. But this position does not reflect the actual beliefs of people affected with HD, nor does it respect the variety of views about the diversity of good lives people have reason to value. In other words, it is not a position derived from pluralistic discussion that is assessed through public reason prior to being deemed true. It is also parochial of “experts” to assume at any given point and from their singular position that their kind of information and logic is what single-handedly ought to guide everyone’s choices; this is precisely the kind of approach that Sen’s conception of justice takes to task. Moreover, in a world full of easily available information, we cannot cite lack of information about HD to explain the various life and reproductive choices of HD-affected individuals that do not follow the logic of experts. This is one of the deep ethical issues imbedded in the public health logic, as it can eclipse the needs and desires of distinct individuals who are at risk for or have HD. It is as though having the disease makes them more likely to be under the guardianship of experts backed by science and statistics to justify managing patients’ personal choices because of the threat that their genes carry. This is a paternalistic position that tries to care by disregarding the would-be choices of those they directly

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pertain to, thinking it knows best regardless of what the individual themself wants, and “cares for them” by reducing their need for autonomy and choice. For people at risk in particular, there is perhaps no better education than watching a parent suffer from the disease, and how a parent suffers has bearing on how at-risk family members approach their own lives. Alice Wexler finds from interviews of at-risk individuals that inadequate institutional support of people with HD has negative perpetuating effects for their at-risk family members: “The optimism or pessimism of at-risk persons is directly related to the kind of care they perceive their ill parent to have received, regardless of the severity of the symptoms” (Wexler 1996). This finding suggests that positive social and institutional support for those already suffering could increase the ability of at-risk individuals to approach their own lives with optimism— that the valuing of HD lives from an institutional standpoint could have direct bearing on people at risk for HD to live the kind of lives they have reason to value. The lived experience of being affected with HD illuminates different kinds of valuable lives, as meanings and values often change for people affected by terminal conditions, which speaks more to the fact that they are the ones who get to determine what a good life looks like from their modified reality. Making reproductive decisions, for example, also involves contextual variables and unconscious processes that differ among individuals— simply being at risk for or having HD does not translate into a simple answer about reproducing because having children is not the kind of choice that just flows from the knowledge of one’s genetic status. The fact that the eradication approach to testing has been ineffective in reducing the prevalence of HD not only points to its failure in terms of that goal, but ethically speaking, it points to its failure to really respect the value of living a life challenged by terminal illness. We therefore need to begin with the belief that HD lives are not only valuable and worth living, as we would with any life touched by illness or disability, but that these lives have positionally salient perspectives on what it would take to live well based on values that become meaningful because of, not despite, one’s at-risk status. In some cases, one’s at-risk status could even be a motivating factor for reproduction, especially with the hope of future treatment. Thus, the espousal of a logic that demands forgoing having a family is one more way of taking away one more thing that would give value to the life of a person with HD. As Alice Wexler puts it in her memoir, “Many genetic counselors report being surprised and disappointed by how many at-risk individuals have children. These counselors fail to realize the symbolic and magical significance of the child as an insurance of the parent’s continuing health...” (Wexler 1996). Starting with the belief that HD lives are valuable is more likely to lead to just institutional practices that further enhance the value of HD lives. It is not simply having HD that reduces one’s ability to live a good life, but the lack of appropriate institutional support that would otherwise expand the capabilities and freedom of already compromised individuals. In addition to the affirmation that HD lives are valuable in and of themselves, our social institutions also have a duty to provide the means for people with or at risk for HD to live the kinds of lives they have reason to value. Specifically, institutions have an indispensable moral role in enhancing the

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capabilities of people with HD by making counseling and testing more accessible with the goal of supporting whatever decision they make regarding it, as well as guaranteeing accessible social support dedicated to meeting the needs of HD patients at all stages of the disease. In Sen’s view, when these social services are improved, a person’s effective freedom (or capabilities) is improved. This has significant bearing for people at risk with HD, who often experience their freedom as severely diminished as a result of the deterministic nature of the disease. Making a decision about getting tested is an exercise of their effective freedom regarding a matter that has deterministic biological components. Something specific to being at risk for a hereditary disorder like HD is its freedom-erasing potential. When faced with such an outcome, the possibilities of freedom on how to manage and navigate the deterministic aspects of the disease become all the more salient, and feel all the more unjust if denied.8 Two other questions remain: should individuals be encouraged to get tested, and will counseling and testing serve to increase the possibility for at risk individuals to live the kind of lives they have reason to value? Appropriate counseling— that follows an individual choice and pluralistic model of care rather than a public health one— is essential because it is also the process by which these two questions can get answered. Under HDSA guidelines, counseling is not intended to either dissuade or promote that people get tested; it is meant to equip the individual with the appropriate information and considerations in order that they,  themselves, freely choose their course of action. But as already mentioned, these guidelines are not mandatory and counseling goals that are fully respectful of patient autonomy may not be ethically consistent with the promotion of testing. In order to demonstrate respect for the lives of people affected by HD, counseling and testing ought to be part of a streamlined and coordinated approach that increases the capability of individuals to make free choices about their genetic status and, importantly, guarantee them the legal protections that justice demands whether they test positive or not. If a treatment is found and becomes more widely available, should practitioners then encourage at-risk individuals to get tested? The answer here depends partially on the answer to another question: will counseling and testing serve to increase the capabilities of at-risk individuals to live the kind of lives they have reason to value, even if they test positive for HD? The answer to this question is then two-pronged: first, an answer must be given with respect to the actual state of things, where treatment is not yet available. Second, an answer can be given with respect to the future potential of receiving treatment if one tests positive. Nance makes the case that with the advent of clinical trials for the treatment of HD, the potential rewards of getting tested could increase and result in a potential influx of people choosing to get tested— and potentially ethical reasons for counselors to push for predictive testing (Nance 2007). This comes, of course, with its own challenges, as it may not be 8  See Chap. 9 in this volume (Gotlib, Anna, “Power, Identity, and Liminality in an American Hospital”) for a broader discussion of the interplay of institutions and patient identity, and how existing institutional practices diminish the agency and moral standing of those compromised by illness.

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possible for all or most of those who test positive for HD to qualify for clinical trials. Counseling in this interim period where treatment is in the exploratory stages must therefore take on the task of preparing people who seek testing for the purpose of pursuing clinical trials of the potential disappointment of not qualifying for them. If a treatment or cure for HD becomes widely available, perhaps counseling could ethically take on the task of promoting testing if equipped to assist individuals who test positive to pursue treatment. But counselors would still need to follow the lead of patients, even if a treatment were available, as undergoing treatment could present its own set of difficulties that not every affected individual would willingly take on.

18.7  Patients’ Capabilities and the Role of Institutions As explained, Sen’s pluralistic model of justice recognizes the role of institutions without being strictly or primarily institution-based, as part of a pluralistic process of decision-making and as sites of protection and promotion of justice. In this view, institutions play a supportive rather than a declarative role with respect to what matters for people to live good lives and realize their capabilities; institutions are there to guarantee the minimum capabilities of individuals, as collectively determined by the populations whose lives have an actual stake in matters of justice. We argue that the various institutions pertinent to HD testing and associated care do not play this necessary supportive role, and that they in fact present serious barriers that reduce the capabilities of people at risk for HD to live the best lives they can live. Despite progress in the role and method of genetic counseling, the effective inability for those at risk to be guaranteed the most important types of social support continues the trend of reducing rather than expanding the capabilities of those at risk for or affected by HD. This includes the difficulty of finding counseling and testing services, financial barriers to doing so, and the lack of institutional protection if one tests positive. All of this leads to the conclusion that the institutions in question are unjust in at least two significant ways: (1) by failing to be pluralistic in ways that are centered on or concerned for HD-affected populations when instituting testing and healthcare practices and (2) by reducing rather than enhancing the capabilities that would allow HD affected populations to live the kinds of lives they have reason to value. The unfortunate starting point is that the testing process for hereditary diseases like HD and what follows from them are not streamlined, and involve institutional stakeholders who are solely profit-driven (health and life insurance companies are the best examples of this) and not even operating under the guise of patient-centered care. Meanwhile, institutional stakeholders that are more ethically driven in their practice, such as genetic counselors and medical experts, suffer from a variety of both historical and emerging challenges as the field of genetic testing rapidly advances. This leads to a disjointed practice that to patients exhibits the belief that the lives of HD patients are not truly worth living or supporting, all the while not

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taking into account or caring enough to create the conditions that would give HD patients the means to create the kinds of lives they would consider to be worth living. The Canadian Collaborative Study of Predictive Testing (CCSPT) for HD, which was a pilot program initiated in British Columbia in 1986 to evaluate the psychological and social effects of predictive testing, has already begun to address the ethical responsibilities of institutions around testing for HD (Lawson  et  al. 1996). Potential ethical issues associated with predictive testing for HD were identified prior to the establishment of the CCSPT’s testing programs, guided by four ethical principles they consider to be essential to clinical practice: autonomy, beneficence, confidentiality, and justice (Huggins et al. 1990). These moral principles, as highly idealistic as they seem, are in fact grounded in a true understanding of the actual needs of patients, and have been developed partially as a consequence of issues that have arisen in predictive testing for HD that have challenged all of the above principles—some of which are unique to HD and others that are generalizable to other late adult-onset disorders. These principles are consistent with Sen’s pluralistic, realizations-oriented framework to the extent that they have arisen from the practice of genetic experts working with patients, derived from the ground up with the intention of increasing the capabilities of HD affected individuals and families so that they may live good lives as they choose. Huggins et al. suggest, and we agree, that these moral principles need to be addressed before testing becomes widely available (Huggins et al. 1990). In the United States, however, testing has become increasingly more available (at least in theory) without adequately addressing any of CCSPT’s moral principles. Let’s consider them all in turn: Autonomy— the primary moral principle in this case— refers to the importance of an individual’s right to make an informed decision about an action that will profoundly affect their life; it includes freedom from coercion and adequate understanding of the implications of testing (Huggins  et  al. 1990). HDSA testing guidelines in the United States also stress the importance of patient autonomy, and the current role of genetic counseling aligns with this moral principle. But in this paper we argue that autonomy needs to extend beyond genetic counseling and the freedom to make one’s own choice to get tested; from a realizations-oriented framework of justice, the principle of autonomy ought to also capture the effective freedom of at-risk and affected individuals to make life choices that allow them to live the kinds of lives they— from their modified reality and the reassessment of values this entails— have reason to value. Under Sen’s idea of justice, an at-risk-for-HD status puts a person in need of non-standard services to achieve their functionings. Nonideal conditions ought to take account of this fact— that different people have needs for different types of institutional services and protections on the basis of personal and social differences (Sen 1999). For Sen, justice also requires that institutions provide such services if people are falling short of a particular capability that has been collectively determined to be significant (Wells 2019). For example, people at risk for HD can all, theoretically, get genetically tested if they choose insofar as a genetic test for the disease actually exists. But the fact that a genetic test exists is only one consideration of many that goes into the ability for someone to get tested. In Sen’s model this

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theoretical freedom to get tested is effectively empty if the person does not have the capability to realize that freedom, and harmful if getting tested takes them further away from living the kind of life they have reason to value—by denying them access to end of life care, to take one example. So a person may be able to get tested without being capable of getting tested; as long as (and to the extent that) there are institutional barriers to this person’s functioning, she cannot be said to be acting out of personal choice and cannot be said to be truly autonomous. The moral principle of beneficence places a high demand on institutions to display goodwill toward HD affected individuals. True beneficence on the part of institutions would translate to the valuing of HD lives without qualification. While this may be technically expected from medical experts, it does not appear to be a given from government programs that provide end of life care or private life and health insurance companies, as we have discussed in the previous sections. Because in a nonideal world we cannot depend on the beneficence of these institutions, there is a real struggle to find compelling motivations to secure legal protections for HD affected individuals from discrimination without demanding an overhaul of the US healthcare system in general, in which private interests often override patient well-­ being. This is a major contemporary issue that goes well beyond the present topic, whose resolution would impact a great many people that are negatively affected by it, and worth fighting for in itself. The moral principle of justice also speaks to the imperative to reform our healthcare system. Justice implies fairness; with regard to medical practices, it means providing equal access to health care and making necessary care accessible to all (Huggins et al. 1990). But cost and access to genetic counseling and testing remain barriers for pursuing such services with respect to HD, so the first requirement in increasing patient autonomy is to make counseling and testing functionally possible by removing these barriers. It is essential for individuals to have relatively easy access to counseling and testing services, and that realistic methods for the coverage of these costs are put in place, be it through health insurance or sliding scale/payment plan options for those without appropriate health insurance. These mandates apply simply to make real the capability of individuals who seek testing to actually get tested. But justice needs to expand to include services for individuals even if they test positive for HD. If, for example, someone’s reason for testing is family planning, and they test positive but want to have children, then are health insurance companies prepared to take on the costs of preimplantation genetic diagnosis (PGD) or in-vitro fertilization (IVF)? This hypothetical course of action— one that would stand as highly responsible even under the old “eradication” view of HD— is not functionally possible if someone does not have a relative amount of wealth to take it on. The fact that parts of the formal process itself penalize people for making otherwise responsible choices is one of the deep contradictions stemming from the disjointed operation of genetic testing practices. Until these practices become more unified, they will continue to make navigating life with HD exceedingly difficult and they will prevent rather than promote these people’s ability to live good lives.

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Compounding the challenges that come with testing positive for HD is the fact that patient confidentiality of their genetic status is barely protected and legally exploitable. The CCSPT’s adherence to confidentiality is limited to only discussing the test results with the patient and goes no further than that. Once someone tests positive for HD, the result is permanently on their health record, which in the United States means that life insurance companies and end-of-life-care service providers can (legally) use it to deny coverage to HD affected individuals. The one way around this, as mentioned earlier, is for at risk individuals to pursue anonymous predictive testing. But, as also discussed earlier, anonymous testing is highly inaccessible and considered counterproductive by counselors, as not having one’s HD status on their health record could thwart the ability for the patient to receive adequate medical care for the disease and be another barrier to justice as equal access to resources. Once again, the lack of a unified system of care for HD patients points to how the benefits of taking x or y course of action within one institution can easily lead to harmful drawbacks present in the practices of other institutions. A true adherence to patient confidentiality with respect to their genetic status would be the legal protection of their genetic information so that it is not used by private institutions to deny essential services, which is not radically different from existing employment protections that cannot legally deny people employment on the basis of their genetic status if they are symptom-free.

18.8  Conclusion Our assessment of patient needs and existing institutional practices lead us to call for a streamlined approach to caring for HD affected populations that increases their capabilities such that they can live the kinds of lives they have reason to value. Starting with the acknowledgment that being at risk for or affected by HD modifies one’s reality in ways that cannot be generalized, we must also accept that it is up to the individuals and families in question to determine what a good life is for them. This acknowledgment means that it is not the role of counselors or medical experts to promote a one-size-fits-all agenda for HD management. Instead, the role of experts and institutions is to guide and support individuals at any stage of the process in ways that promote their autonomy, and thus their ability to decide on and live the kinds of lives they have reason to value from their particular positions. Professional guidance, for example, would take the form of education in a manner that enhances the patient’s ability to make a free choice about knowing their genetic status. Institutional support, as another example, would take the form of making relevant care, as needed by each affected person, accessible and not financially burdensome. These are the practical necessities that become evident from an on-the-­ ground assessment of how things are actually working.

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