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English Pages 656 [660] Year 2022
The Edinburgh Companion to the Politics of American Health
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The Edinburgh Companion to the Politics of American Health
Edited by Martin Halliwell and Sophie A. Jones
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Edinburgh University Press is one of the leading university presses in the UK. We publish academic books and journals in our selected subject areas across the humanities and social sciences, combining cutting-edge s cholarship with high editorial and production values to produce academic works of lasting importance. For more information visit our website: edinburghuniversitypress.com © editorial matter and organization Martin Halliwell and Sophie A. Jones, 2022 © the chapters their several authors, 2022 Edinburgh University Press Ltd The Tun – Holyrood Road 12(2f) Jackson’s Entry Edinburgh EH8 8PJ Typeset in 10/12 Adobe Sabon by Cheshire Typesetting Ltd, Cuddington, Cheshire, and printed and bound in Great Britain A CIP record for this book is available from the British Library ISBN 978 1 4744 5096 6 (hardback) ISBN 978 1 4744 5098 0 (webready PDF) ISBN 978 1 4744 5099 7 (epub) The right of Martin Halliwell and Sophie A. Jones to be identified as the editors of this work has been asserted in accordance with the Copyright, Designs and Patents Act 1988, and the Copyright and Related Rights Regulations 2003 (SI No. 2498).
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Contents
Notes on Contributors Introduction: The Political Landscapes of American Health, 1945–2020 Martin Halliwell and Sophie A. Jones
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Part I: Geography, Community and American Health11 1 Health and Inequality in the Postwar Metropolis Andrew R. Highsmith
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2 Poverty, Health and Health Care in Rural Communities Jessica D. Ulrich-Schad, Cynthia M. Duncan and Kristen Koci
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3 The Politics of Immigration Meets the Politics of Health Care Beatrix Hoffman
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4 Latinxs and the US Health Care System Rocío Calvo and Victor Figuereo
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5 American Indian Health: The Medicine Wheel versus the Iron Triangle Margaret P. Moss
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Part II: Critical Health Conditions: Debates and Histories101 6 The Politics of Polio Vaccination in Postwar America, 1950–60: Detractors and Defenders105 Stephen E. Mawdsley 7 Beyond the Cancer Wars S. Løchlann Jain
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8 A System in Crisis: US Health Care Politics and the AIDS Epidemic Jonathan Bell
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9 The Politics of ‘Obesity’: Medicalization, Stigmatization and Liberation of Fat Bodies149 Katelyn B. Ferreira and Katrina T. Webber
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10 Revising Diagnoses, Reinventing Psychiatry: DSM and Major Depressive Disorder167 Owen Whooley Part III: The Politics of Children’s Health183 11 US Children’s Health Insurance: Policy Advocacy and Ideological Conflict187 Alice Sardell 12 Autism and the Anti-Vaccine Movement Kristin Bumiller 13 Diagnosing Deficit, Promising Enhancement: ADHD and Stimulants on Screen Sophie A. Jones
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14 On the Possibility of Affirmative Health Care for Transgender Children Jules Gill-Peterson
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15 Black Infant Mortality: Continuities, Contestations and Care Tia Murray and Annie Menzel
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Part IV: The Institutional Matrix of Health Care265 16 The Regional and Racial Politics of Postwar Hospitals Karen Kruse Thomas
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17 Health Activism in the 1960s and the Community Health Center System Thomas J. Ward Jr.
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18 The Veterans Administration and PTSD: Challenges and Changes from Vietnam to Iraq Jenna Pitchford-Hyde 19 The Pharmaceutical Industry, Drug Regulation and US Health Services David Healy
306 322
20 The National Institutes of Health: Courting Congress, Creating a Research Infrastructure338 David Cantor Part V: The White House, Congress and Health Reform357 21 Left Out: Health Security and the American Welfare State, 1935–50 Colin Gordon
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22 Medicare and Medicaid after the Great Society: Containing Costs, Expanding Coverage375 Jill Quadagno 23 Mental Health, Stigma and Federal Reform in the 1970s and 1990s Martin Halliwell
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24 The War on Drugs: Nixon, Reagan, Trump Matthew R. Pembleton
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25 Obamacare and Its Critics Alex Waddan
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Part VI: Justice, Ethics and American Health441 26 Roe v. Wade and the Cultural Politics of Abortion: The Shift from Rights to Health445 Mary Ziegler 27 Genetics, Health and the Making of America’s Triracial Isolates, 1950–80 Michell Chresfield
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28 The Rhetoric and Politics of American Ageism: Notes from a Pandemic Judy Z. Segal
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29 Towards a Structural Competency Framework for Addressing US Gun Violence Jonathan M. Metzl, Philip J. Pettis, Tara McKay and Jennifer L. Piemonte 30 Mass Incarceration and Health Inequity in the United States Johanna T. Crane
493 511
Part VII: Public Health and Global Health531 31 Occupational and Environmental Health in Twentieth-Century America David Rosner and Gerald Markowitz
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32 Environmental Health beyond the State: Thinking through the 1970s Jennifer Thomson
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33 Bioterrorism, Pandemic and the American Public Melanie Armstrong
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34 Health Internationalism in the US and Beyond Anne-Emanuelle Birn and Theodore M. Brown
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35 Pandemics and the Politics of Planetary Health Priscilla Wald
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Bibliography618 Index628
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Notes on Contributors
Melanie Armstrong is Associate Professor of Environment and Sustainability at Western Colorado University. She studies how social systems are built around shifting ideologies of nature, drawing theory and methods from fields of political ecology, environmental history, and science and technology studies. Armstrong is the author of Germ Wars: The Politics of Nature and America’s Landscape of Fear (University of California Press, 2017) and chairs the Center for the History of Microbiology/ASM Archives for the American Society of Microbiology. Jonathan Bell is Professor of US History and Head of Department of the Institute of the Americas at University College London. He is the author of The Liberal State on Trial: The Cold War and American Politics in the Truman Years (Columbia University Press, 2004) and California Crucible: The Forging of Modern American Liberalism (University of Pennsylvania Press, 2012), and the editor of Making Sense of Modern American Liberalism (University of Illinois Press, 2012) and Beyond the Politics of the Closet: Gay Rights and the American State since the 1970s (University of Pennsylvania Press, 2020). He is currently working on a book on the relationship between LGBTQ politics and the health and welfare systems in the United States since the 1960s. Anne-Emanuelle Birn is Professor of Global Development Studies and of Social and Behavioural Health Sciences at the University of Toronto, where she served as Canada Research Chair in International Health from 2003 to 2013. Birn’s research explores the history, politics and political economy of global health, with particular interests in Latin American health and social justice movements, children’s health and health rights, and philanthrocapitalism. Her books include Marriage of Convenience: Rockefeller International Health and Revolutionary Mexico (Rochester University Press, 2006), Comrades in Health: U.S. Health Internationalists, Abroad and at Home (Rutgers University Press, 2013), Textbook of Global Health (Oxford University Press, 2017) and Peripheral Nerve: Health and Medicine in Cold War Latin America (Duke University Press, 2020). In 2014 she was recognized among the top 100 Women Leaders in Global Health, and in 2018 she was named to the List of Canadian Women in Global Health. Theodore M. Brown is Professor Emeritus of History and of Public Health Sciences at the University of Rochester. His research interests include global medicine and
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public health, US health policy and politics, the health left, philanthropy and public health, psychosomatic medicine and biopsychosocial approaches to clinical practice. Brown has served as History editor of the American Journal of Public Health and has co-authored Making Medical History: The Life and Times of Henry E. Sigerist (Johns Hopkins University Press, 1997), The Quest for Health Reform: A Satirical History (American Public Health Association, 2012) and Comrades in Health: U.S. Health Internationalists, Abroad and at Home (with Anne-Emanuelle Birn, Rutgers University Press, 2013). In 2019 he co-authored The World Health Organization: A History (Cambridge University Press), and he is currently collaborating on a biography of Halfdan Mahler, the WHO’s director general from 1973 to 1988. Kristin Bumiller is a political scientist and the George Daniel Olds Professor of Economic and Social Institutions at Amherst College, Massachusetts. Her research areas include law and social justice, violence against women and disability politics. She is currently working on a project focusing on the social construction of autism in medicine and society. Bumiller is the author of The Civil Rights Society (Johns Hopkins University Press, 1992) and In an Abusive State (Duke University Press, 2008). Rocío Calvo is Associate Professor at Boston College School of Social Work, where she directs the Latinx Leadership Initiative. Her research focuses on the role that the health care system and other institutions of social protection play on the incorporation of immigrants. Among her publications she is the author of ‘Obamacare in Action: How the Health Care System Contributes to Immigrants’ Sense of Belonging’ (Journal of Ethnic and Migration Studies, 2017). David Cantor is a researcher at the Instituto de Desarrollo Económico y Social, Buenos Aires, Argentina, an adjunct professor in the School of Public Health, University of Maryland, College Park, and a former acting-director of the Office of History at the National Institutes of Health. His publications include Cancer in the Twentieth Century (Johns Hopkins University Press, 2008), Meat, Medicine and Human Health in the Twentieth Century (Routledge, 2010), Stress, Shock, and Adaptation in the Twentieth Century (2014), Health Education Films in the Twentieth Century (2018) and Cancer, Research, and Educational Film at Midcentury (2022), the last three with University of Rochester Press. He co-edits the book series Social Histories of Medicine for Manchester University Press. Michell Chresfield is a twentieth-century US historian at the University of Birmingham whose research interests include cultural and intellectual history, the history of science and medicine, and the history of racial formation and identity-making. Her current research examines how Americans of Native, Black and white descent have used social science, medicine and the law to negotiate multiracial identities during the Jim Crow era. She is currently working on a book project based on this research, titled ‘What Lies Between: Social Science, Medicine, and the Making of America’s Triracial Isolates’. Johanna T. Crane is a medical anthropologist and Associate Professor of Bioethics at Albany Medical College, New York, where she co-directs the curriculum in Health, Care, and Society. Her research areas include incarceration and health in the United
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States, HIV/AIDS and inequality in the US and Uganda, diversity and inclusion in precision medicine research, and the politics of global health science. She is the author of Scrambling for Africa: AIDS, Expertise, and the Rise of American Global Health Science (Cornell University Press, 2013). Cynthia M. Duncan is Professor Emerita in Sociology at the University of New Hampshire and Senior Fellow at the Meridian Institute. Her work focuses on opportunity and social change in rural communities. She was founding director of UNH’s Carsey Institute, following four years as Director of Community and Resource Development at the Ford Foundation. Duncan is the author of Worlds Apart: Poverty and Politics in Rural America (Yale University Press, 2014) and editor of Poverty in Rural America (Auburn House, 1992). Katelyn B. Ferreira holds a Master of Public Health in Health and Social Behavior from the Harvard T.H. Chan School of Public Health and currently works as a research program manager at the Icahn School of Medicine at Mount Sinai, New York. Her research interests include addressing disparities in access to health care, especially in the contexts of eating disorders, queer identities and serious illness. Ferreira’s work has been published in journals including Stigma and Health and JAMA Internal Medicine. Victor Figuereo is Assistant Professor at the University of Pittsburgh’s School of Social Work. His work focuses on racialization, the intersections of race and ethnicity, and access to health and mental health care factors as it pertains to psychological well-being and distress of Latinxs living in the United States. He is the author of ‘Racialization and Psychological Distress among U.S. Latinxs’ (Journal of Racial and Ethnic Health Disparities, 2021). Jules Gill-Peterson is Associate Professor in the Department of History at Johns Hopkins University. Gill-Peterson is the author of Histories of the Transgender Child (University of Minnesota Press, 2018), has co-edited special issues of Social Text and GLQ: A Journal of Lesbian and Gay Studies, and is the current editor of Transgender Studies Quarterly. Gill-Peterson is currently working on a book titled Gender Underground: A History of Trans DIY which reframes the trans twentieth century not through institutional medicine, but through do-it-yourself practices of trans people that forged parallel medical and social worlds in transition. Colin Gordon is the F. Wendell Miller Professor of History at the University of Iowa. He is the author of New Deals: Business, Labor and Politics, 1920–1935 (Cambridge University Press, 1994), Dead on Arrival: The Politics of Health Care in Twentieth Century America (Princeton University Press, 2003), Mapping Decline: St. Louis and The Fate of the American City (University of Pennsylvania Press, 2008) and Citizen Brown: Race, Democracy, and Inequality in the St. Louis Suburbs (University of Chicago Press, 2019). Martin Halliwell is Professor of American Thought and Culture at the University of Leicester and currently a Visiting Fellow at the University of Manchester. He specializes in the cultural and intellectual history of the United States and the health humani-
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ties, with a particular emphasis on mental health. He has authored and edited fourteen books, most recently American Health Crisis: One Hundred Years of Panic, Planning, and Politics (University of California Press, 2021). He is a former chair of the British Association for American Studies and he is currently completing Transformed States: Medicine, Biotechnology, and American Culture, 1990–2020, the final book in a trilogy for Rutgers University Press that constructs a cultural history of mental health in the United States between World War II and Covid-19. David Healy is a Professor in the Department of Family Medicine at McMaster University, Ontario. He is the author of twenty-four books, including The Antidepressant Era (Harvard University Press, 1999), Let Them Eat Prozac (New York University Press, 2004) and Pharmageddon (University of California Press, 2012). His main areas of research are adverse effects of treatment, clinical trials in psychopharmacology, the history of psychopharmacology, and the impact of both trials and psychotropic drugs on our culture. He is a former Secretary of the British Association for Psychopharmacology, and his latest book, Shipwreck of the Singular, was published in 2021 by Samizdat Press. Andrew R. Highsmith is Associate Professor of History at the University of California, Irvine. He is a specialist in modern American history, metropolitan history and the history of public health. He is the author of Demolition Means Progress: Flint, Michigan, and the Fate of the American Metropolis (University of Chicago Press, 2015) and is a regular contributor to public and policy conversations regarding the Flint water crisis. He is currently writing a second book, A Toxic Republic: Life and Death along the Color Line in Modern America, on the history of racial health disparities in the United States since 1900. Beatrix Hoffman is Professor of History at Northern Illinois University in DeKalb, Illinois. She is the author of Health Care for Some: Rights and Rationing in the United States since 1930 (University of Chicago Press, 2012) and The Wages of Sickness: The Politics of Health Insurance in Progressive America (University of North Carolina Press, 2001) and co-editor of Patients as Policy Actors (Rutgers University Press, 2011). Her current research project investigates the history of immigrants’ access to health care in the United States. Sophie A. Jones is Lecturer in Contemporary Literature and Gender Studies at the University of Strathclyde. She specializes in post-1945 US literature and film and the politics of the body, with a particular focus on gender and disability. Her first monograph, The Reproductive Politics of American Literature and Film, will be published by Edinburgh University Press in 2023. Her current research investigates the medicalization of attention in contemporary US literature and culture, on which she has also published in the journal American Literary History. S. Løchlann Jain is Professor of Anthropology at Stanford University and Visiting Chair of Global Health and Social Medicine at Kings College London. Jain is the author of Injury (Princeton University Press, 2006), Malignant: How Cancer Becomes Us (University of California Press, 2013) and a book of drawings, Things that Art:
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A Graphic Menagerie of Enchanting Curiosity (University of Toronto Press, 2019). Jain was a Guggenheim Fellow in 2021 and is currently working on a theory of vaccinology through the concept of the WetNet, which refers to fluid bonding among humans and animals in ways that create pathways for the transmission of pathogens. Kristen Koci is a doctoral candidate in the Department of Sociology at Utah State University focusing on Environment and Community. Her research interests include rural health and health care access, mental health and mental health care access, community development, rural sociology, natural resource sociology and social inequality. She has published work in journals including the International Public Health Journal, Society & Natural Resources and Water Environment Research. Tara McKay is a sociologist and Assistant Professor of Medicine, Health and Society with secondary appointments in the Departments of Sociology, Health Policy, and Gender and Sexuality Studies at Vanderbilt University. She is affiliated with the Vanderbilt Institute for Global Health and currently serves as the Associate Director of the Vanderbilt LGBT Policy Lab. McKay is Principal Investigator of the Vanderbilt University Social Networks, Aging, and Policy Study funded by the National Institute on Aging. Gerald Markowitz is University Distinguished Professor of History at John Jay College of Criminal Justice and the Graduate Center, City University of New York, and also Adjunct Professor of Sociomedical Sciences at Columbia’s Mailman School of Public Health. He is the co-author of seven books with David Rosner, including Deadly Dust: Silicosis and the Politics of Occupational Disease in Twentieth-Century America (Princeton University Press, 1991; 2005), Deceit and Denial: The Deadly Politics of Industrial Pollution (University of California Press, 2002; 2013) and Building the Worlds that Kill Us: How Death and Disease Is Emblematic of the Worlds We Create (Columbia University Press, 2021). Markowitz was elected to the National Academy of Medicine in 2017. Stephen E. Mawdsley is a historian of medicine and Lecturer in Modern American History at the University of Bristol. His research areas include poliomyelitis, immunization, disability and the consequences of Jamaica ginger paralysis. He is the author of Selling Science: Polio and the Promise of Gamma Globulin (Rutgers University Press, 2016) and Principal Investigator on a Wellcome Trust-funded project, ‘The Jake Walk Blues’, which focuses on the history of alcohol, disability and stigma during the Great Depression. Annie Menzel is a political theorist and former midwife whose work focuses on understanding how white supremacy, racism, colonization and gender-based oppression shape human reproductive life, health and care, as well as theorizations of reproductive justice and freedom. She is completing her first book for University of California Press, Fatal Deflection: Black Infant Mortality and the Biopolitics of Racial Innocence, and developing a second book project, titled ‘Birthing Paradox: Race, Colonization, and Radicalism in US Midwifery’ which seeks to understand the contradictory politics and practices of the homebirth midwifery movement since 1970.
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Jonathan M. Metzl is the Frederick B. Rentschler II Professor of Sociology and Psychiatry, and the director of the Department of Medicine, Health and Society at Vanderbilt University. Winner of the 2020 Robert F. Kennedy Human Rights Award, the 2020 APA Benjamin Rush Award for Scholarship, and a 2008 Guggenheim fellowship, Metzl has written extensively for medical, psychiatric and popular publications about some of the most urgent hot-button health issues facing America and the world. His books include Prozac on the Couch (Duke University Press, 2003), The Protest Psychosis (Beacon, 2010), Against Health: How Health Became the New Morality (New York University Press, 2010) and Dying of Whiteness: How the Politics of Racial Resentment Is Killing America’s Heartland (Basic Books, 2019). Margaret P. Moss Hidatsa/Dakhóta is Director of the First Nations House of Learning at the University of British Columbia and Associate Professor in Nursing. She is the only American Indian to hold both nursing and juris doctorates. She is editor of an award-winning nursing textbook, American Indian Health and Nursing (Springer, 2015) and co-editor of Health Equity and Nursing: Achieving Equity Through Policy, Population Health, and Interprofessional Collaboration (Springer, 2020). In 2021 Moss was appointed by the National Academies of Sciences, Engineering and Medicine to the Board on Population Health and Public Health Practice. Tia Murray is a doctoral candidate in Human Ecology in the Center for Research on Gender and Women at the University of Wisconsin–Madison, doula and long-time community organizer. Murray’s research explores the root causes of residual impacts of racial inequities in maternal and child health, and Black infant mortality in particular, using a reproductive justice framework and community-based participatory research. Murray is also interested in furthering research on the benefits of doulas on perinatal health outcomes in communities of colour and feels it is imperative to reframe language in respect to racial health disparities. Matthew R. Pembleton is a writer and historian based in the Washington DC region, specializing in US public health and safety, government, and foreign policy. He teaches at American University and is the author of Containing Addiction: The Federal Bureau of Narcotics and the Origins of America’s Global Drug War (University of Massachusetts Press, 2017). Philip J. Pettis is a doctoral candidate in the Department of Sociology at Vanderbilt University. His research interests include medical sociology and mental health, social networks, sexuality and gender, race/ethnicity and social psychology. His work appears in Sociological Perspectives, Social Science and Medicine and the Journal of Health and Social Behavior. He is an American Sociological Association Minority Fellowship Program Fellow and a National Institute of Health-funded Social Networks and Health Fellow via Duke University Network Analysis Center. Jennifer L. Piemonte is a doctoral candidate in the Psychology and Women’s and Gender Studies programs at the University of Michigan, Ann Arbor. Her primary research focuses on attitudes and behaviours related to gender and sexuality and she has published in the Harvard Review of Psychiatry and Social Science and Medicine.
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Piemonte’s broader interdisciplinary research interests include the effects of stigma on policy and practices. Jenna Pitchford-Hyde is Lecturer in Humanities at the University of East Anglia. Her research focuses on contemporary war narratives in literature and media with particular interests in masculinity, technology and disability studies. Recent publications include ‘Masculinity, Identity, and Disabled Veterans: How British Audiences Respond to Representations of Military Veterans on Prime Time BBC Programmes’, in Rhetoric of Masculinity (2022), and ‘Bare Strength: Representing Veterans of the Desert Wars in US Media’ (Media, Culture & Society, 2017). Jill Quadagno is Professor Emerita of Sociology at Florida State University where she held the Mildred and Claude Pepper Eminent Scholar Chair in Social Gerontology. She has published twelve books and more than eighty articles on ageing, health and social policy issues. Among her books are One Nation Uninsured: Why the U.S. Has No National Health Insurance (Oxford University Press, 2005) and The Color of Welfare: How Racism Undermined the War on Poverty (Oxford University Press, 1994). Quadagno’s areas of specialization include social security reform, health policy, long-term care and public attitudes towards social programs. She is past president of the American Sociological Association and was elected to the National Academy of Medicine in 2010. David Rosner is Ronald H. Lauterstein Professor of Sociomedical Sciences and Professor of History at Columbia University and Co-Director of the Center for the History of Public Health at Columbia’s Mailman School of Public Health. He has authored eleven books, including (with Gerald Markowitz) Deadly Dust: Silicosis and the Politics of Occupational Disease in Twentieth-Century America (Princeton University Press, 1991; 2005), Lead Wars: The Politics of Science and the Fate of America’s Children (University of California Press, 2013) and Building the Worlds that Kill Us: How Death and Disease Is Emblematic of the Worlds We Create (Columbia University Press, 2021). He was elected to the National Academy of Medicine in 2010. Alice Sardell is a political scientist and a Professor Emerita in the Urban Studies Department at Queens College, CUNY and affiliated faculty at the CUNY Graduate School of Public Health and Health Policy. Her research focuses on US health politics and policy, particularly as it affects low-income and medically underserved populations. She is the author of The US Experiment in Social Medicine: The Community Health Center Program, 1965–1986 (University of Pittsburgh Press, 1988) and Insuring Children’s Health: Contentious Politics and Public Policy (Lynne Rienner, 2014), as well as book chapters and journal articles on US health and welfare policy, most recently on advocacy for improved health services for immigrant New Yorkers. Judy Z. Segal is a Professor in the Department of English Language and Literatures and in the Science and Technology Studies Graduate Program at the University of British Columbia. She specializes in rhetoric(s) of health and medicine and is author of Health and the Rhetoric of Medicine (Southern Illinois University Press, 2005) as well as numerous essays. Segal’s recent work has taken up rhetorical elements in public
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discourse on pain, drugs, breast cancer, female sexual dysfunction and ageing. Her 2020 essay ‘Ageism and Rhetoric’ appears in the Routledge Handbook of the Medical Humanities. Karen Kruse Thomas is the historian of the Johns Hopkins Bloomberg School of Public Health. She is the author of Deluxe Jim Crow: Civil Rights and American Health Policy, 1935–1954 (University of Georgia Press, 2011) and Health and Humanity: A History of Johns Hopkins Bloomberg School of Public Health, 1935–1985 (Johns Hopkins University Press, 2016). She is currently finishing a second volume on the history of the Johns Hopkins Bloomberg School of Public Health since 1985. Jennifer Thomson is a historian and Associate Professor of History at Bucknell University, Pennsylvania. She is the author of The Wild and the Toxic: American Environmentalism and the Politics of Health (University of North Carolina Press, 2019). Her current research examines how the United States Environmental Protection Agency furthered the racialized health inequalities and environmental hazards generated by federally sponsored residential segregation. Jessica D. Ulrich-Schad is a rural sociologist and Associate Professor of Sociology at Utah State University in the area of Environment and Community. One aspect of her research focuses on how natural resource related trends or events (amenity migration, oil and gas booms/busts, natural resource dependency) impact community-making and perceived quality of life, including health and mental health. She has published this work in journals such as the Journal of Peasant Studies, Rural Sociology and Energy Research & Social Science. Alex Waddan is Associate Professor in American Politics at the University of Leicester specializing in the study of US social policy, especially in the fields of health and welfare. He is the author or co-author of six books including The Politics of Policy Change (Georgetown University Press, 2012) and Obamacare Wars: Federalism, State Politics and the Affordable Care Act (University of Kansas, 2016), as well as numerous journal articles. Priscilla Wald is R. Florence Brinkley Distinguished Chair of English at Duke University, where she co-edits American Literature with Matthew Taylor. She is the author of Contagious: Cultures, Carriers, and the Outbreak Narrative (Duke University Press, 2008) and Constituting Americans: Cultural Anxiety and Narrative Form (Duke University Press, 1995), as well as co-editor of Twentieth and Twenty-First Century Literature and Science, volume 5 of Palgrave Handbooks of Literature and Science (Palgrave Macmillan, 2020) and Keywords: Health Humanities (New York University Press, 2022). She is currently working on a monograph titled ‘Human Being after Genocide’. Thomas J. Ward Jr. is a historian and Assistant Dean of the School of Arts and Sciences at the Farmingdale State College–State University of New York. He is the author of Black Physicians in the Jim Crow South (Arkansas University Press, 2003) and Out in the Rural: A Mississippi Health Center and Its War on Poverty (Oxford University
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Press, 2017). He is currently working on a book on health care and the civil rights movement. Katrina T. Webber is a doctoral candidate in the Department of Communication at the University of Connecticut. Her research is situated at the intersection of interpersonal communication, health and social justice. Her area of specialization focuses on weight stigma and interrogating how socially constructed ideas of health and appearance standards impact upon identity and relationships, perpetuate fatphobia and racism and exacerbate health disparities. Her published work can be found in Fat Studies: An Interdisciplinary Journal of Body Weight and Society and Communication Theory. Owen Whooley is Associate Professor of Sociology and Regents’ Lecturer at the University of New Mexico. His research interests include medical professions, American psychiatry, psychiatric diagnosis, and community mental health in the United States. Whooley is the author of two books, Knowledge in the Time of Cholera: The Struggle over American Medicine in the Nineteenth Century (University of Chicago Press, 2013) and On the Heels of Ignorance: Psychiatry and the Politics of Not Knowing (University of Chicago Press, 2019), both of which won the Robert K. Merton Book Award from the Science, Knowledge and Technology section of the American Sociological Association. Mary Ziegler is Professor of Law at University California, Davis Law School. Her research focuses on the law, history and politics of reproduction, health care, and conservatism in the United States from 1945 to the present. She is the author of Abortion and the Law in America: Roe v. Wade to the Present (Cambridge University Press, 2020), Beyond Abortion: Roe v. Wade and the Fight for Privacy (Harvard University Press, 2018) and After Roe: The Lost History of the Abortion Debate (Harvard University Press, 2015), the winner of the 2014 Thomas J. Wilson Memorial Prize. Ziegler’s latest book is Dollars for Life: The Antiabortion Movement and the Fall of the Republican Establishment (Yale University Press, 2022) and she is working on a project on ‘Reproduction and the Constitution’ for Routledge.
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Introduction: The Political Landscapes of American Health, 1945–2020 Martin Halliwell and Sophie A. Jones
O
n 20 July 2021, four leading United States health officials addressed a congressional hearing, ‘The Path Forward: A Federal Perspective on the Covid-19 Response’, held by the US Senate Health, Education, Labor and Pensions Committee, twenty months after the novel coronavirus was first identified as a disease event in Wuhan, the capital of Hubei Province in central China.1 Rather than providing a conclusive review of the highly contagious SARS-CoV-2 virus that swept the United States and over two hundred countries through 2020, the committee recognized that the nation remained in a perilous state, with the Delta variant (first identified in India in December 2020) at that time causing more than 80 per cent of Covid-related illness and death among US citizens. The domestic and global politics of the hearing are evident from these basic facts about viral transmissibility and the framing of two Asian countries by many politicians and reporters as significant international health threats, despite the efforts of the World Health Organization to classify the sequence of Covid-19 variants alphabetically (Alpha to Omicron) so as not to stigmatize particular nations or peoples.2 The co-chair, Senator Patty Murray, opened the hearing by highlighting the ‘promise and peril’ of this moment, and then the four health officials spoke in turn about the importance of the federal vaccination program for saving lives and containing viral spread, confirming that the most severe responses to Covid-19 were among unvaccinated Americans. The drama of the otherwise cordial hearing centred on a barbed exchange between Rand Paul, Republican senator from Kentucky and a trained ophthalmologist, and virologist Anthony Fauci, the long-standing director of the National Institute of Allergy and Infectious Diseases, who had been a key figure in the White House Coronavirus Task Force during the final year of the Trump administration and was now President Biden’s Chief Medical Advisor.3 Instead of addressing questions of disease prevention, Rand Paul swerved to the unproven theory that the National Institutes of Health (NIH) directly funded ‘gain of function’ research at the Wuhan Institute of Virology during the 2010s, thereby making SARS-related viruses transmissible between bats and humans. Paul began by reminding Fauci that it is ‘a crime to lie to Congress’, recalling that Fauci had stated to this committee on 11 May 2021 that ‘the NIH has not ever and does not now fund gain of function research’ at the Wuhan laboratory. Referring to a 2017 paper co-authored by Wuhan scientists and the US non-profit pandemic prevention company EcoHealth Alliance, Rand held Fauci respon-
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martin halliwell and sophie a. jones
sible for using NIH funding to sponsor ‘high risk research that creates new potential pandemic pathogens that exist only in the lab not in nature’, at a time of a US federal funding pause on chimeric research that seeks to alter the molecular structure of viruses.4 In response, Fauci denied ever lying to Congress, refused to retract his 11 May statement, and flatly dismissed the implication that NIH funding had been used for gain of function research or had led to the emergence of SARS-CoV-2. Paul accused Fauci of dancing around definitions so as to ‘obscure responsibility for four million people dying around the world from a pandemic’, echoing President Trump’s attempt of the previous year to blame the World Health Organization for ‘unleashing the contagion around the world’.5 In doing so, Paul drew on the unproven ‘lab leak’ theory in seeking scapegoats for the emergence of Covid-19, casting NIH as the medical research wing of big government, to which he and a number of congressional Republicans were ideologically opposed.6 Although Paul did not have time in his section of the hearing to spin the conspiracy theory that Hunter Biden, son of the newly elected US president, was linked to EcoHealth (as the conspiratorial platform The National Pulse was claiming a few weeks earlier), he nevertheless made tenuous links with the aim of trapping Fauci into saying something that could harm NIH and the incumbent Democratic administration.7 To Paul’s charge that the NIH director was ‘obfuscating the truth’, Fauci retorted that it was ‘molecularly impossible’ for the Wuhan research to lead to SARS-CoV-2, closing the exchange with a phrase that network news channels played repeatedly that day: ‘if anyone is lying here, senator, it is you’.8 Rarely have congressional hearings on science reached such a dramatic pitch beyond partisan debates about embryonic research and reproductive health. Rarely, too, has there been such a barbed exchange between a senator and a federal health official, reminiscent of the often trumped-up charges of the House Un-American Activities Committee that sought to unearth subversion during the Cold War (though there is evidence that the NIH applied loyalty criteria to awarding grants during the 1950s).9 More pertinently, Paul conveniently ignored that Fauci had served as an NIH director under six former administrations (four Republican, two Democratic), that he had advised President Reagan’s surgeon general on HIV/AIDS policy in the mid-1980s, and that he had worked on George W. Bush’s President’s Emergency Plan for AIDS Relief in the 2000s. Instead, Paul insinuated that Fauci had colluded with what Senate Majority Leader Mitch McConnell disparagingly called a ‘far-left social experiment’, enabling risky research in a Communist country.10 While investigations into the cause of SARS-CoV-2 are ongoing as we write, Paul’s accusations also ignored the likely impact of misinformation about mask-wearing, therapeutics and vaccines promulgated by the Trump administration and by some congressional Republicans.11 That the World Health Organization sought in early 2020 to tackle both the coronavirus pandemic and the accompanying ‘infodemic’ (a term first used during the SARS outbreak of 2002–3), reveals that public health initiatives operate on both material and discursive levels.12 As this congressional exchange illustrates, the politics of health has many moving elements, here combining scientific research and public health with personal belief-systems and rival truth claims. This makes health politics a charged and contested arena in which questions of power, privilege and inequality often hide behind bureaucratic disagreements about funding policies and delivery models. In order to
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explore these and related complexities, when we began planning this project in 2018 we aimed to bring together an intergenerational and multidisciplinary group of scholars to address major historical and contemporary challenges in the spheres of health and health care which have prompted – and continue to prompt – debate in public life. In fulfilling this aim, The Edinburgh Companion to the Politics of American Health assembles forty-five experts from the United States, Canada and the United Kingdom, across a number of generations and disciplines in the humanities and social sciences, to appraise the contested nature of health in a nation that spends more health dollars than any other, but that always appears to be in crisis mode when it comes to health care. Back in 2018, three of the most pressing health issues were the congressional attempts to dismantle the Patient Protection and Affordable Care Act of 2010; a mounting wave of opioid-related addiction and deaths caused, in part, by sustained negligence within the medical and pharmaceutical industries; and renewed threats to abortion rights and access across a number of states. All three of these ideologically polarizing issues raise questions of authority, inequity and identity. But instead of adopting the position-taking of much political debate, each of these issues demands a multifaceted perspective that is inflected by what the medical historian Charles Rosenberg calls ‘structured contention and contingency’.13 Rather than taking politics out of health, such a perspective reveals their inextricability. Clare Bambra and colleagues have argued that the politics of health is often deliberately occluded to protect power interests, while the broad arena of health is frequently reduced to a commodified version of health care that is ‘produced and delivered by the market or the health service’.14 More recently, Daniel Dawes contends that an analysis of ‘the political determinants of health’ tends to be overshadowed by an epidemiological appraisal of social determinants such as discrimination, poverty, housing, workplace conditions and toxic exposure.15 Recognizing that political and social determinants are not categorically distinct, the contributors to this volume explore the intersections between health and social movements, the challenges faced by a twenty-first-century capitalist health care system, the contours of health and illness as experienced by diverse communities, and the often conflicted role the United States plays in the world when it comes to aid interventions and setting health agendas.16 In seeking a prismatic view, the volume traces lines of continuity and change since 1945 in ways that challenge the short-termism of many aspects of US health politics. A prismatic perspective enables us to think about the multifaceted arena of American health of which health care is the most obvious but not the only face, understood, as Danielle Raudenbush argues, as a series of ‘decentralized and fragmented’ subsystems rather than a seamless system.17 As such, the thirty-five chapters of this volume offer nuanced readings of hot-button topics across the broad landscape of American health, examining its politics through a combination of historical, cultural, medical, sociological, legal, anthropological, ethical and environmental lenses. We agree with Dawes’s view that the critical and contested status of American health is now at an inflection point, impelling US citizens and their political representatives to ‘decide whether to move forward and embrace a more inclusive, equitable, and healthy society or reverse course, as it has in the past, wiping out any momentum in reducing disparities and exacerbating inequalities among population groups’.18 However, this same point could have been made of many historical phases in the seventy-five-year span of
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this volume, starting with the years after World War II with President Harry Truman’s unsuccessful attempt to push a universal health care plan through Congress and the signing of the Hospital Survey and Construction Act (the Burton-Hill Act) that sought to modernize health services as well as tackle inherent racial discrimination in the hospital system. It is important not to focus on the contemporary moment at the expense of health debates of the past that can offer us ‘alternative vantage points from which to view, reflect on and critique the biomedical’, ‘different ways of sensing the world’ and ‘the extended, continual and shifting process of negotiation through which certain objects and practices come to our attention and others fade from view’, as the editors of The Edinburgh Companion to the Critical Medical Humanities describe the multiple uses of history.19 Nonetheless, it is undeniable that the state of US health care has become increasingly polarized in the twenty-first century just as the wealth gap between rich and poor Americans has increased, more than doubling between the 1990s and the late 2010s.20 These health inequities are contextualized by the fact that the US spends 18 per cent of GDP on health care (of which approximately 80 per cent derives from government sources), compared with between 10 and 12 per cent of GDP in other high-income countries prior to the coronavirus pandemic.21 Federal politics is a key axis of this volume, but so are historical voices, the needs of diverse communities, the health challenges of other countries, and the aspiration – as voiced by the World Health Organization – to treat health as a right and not a privilege. One danger of allowing legislators to shape the politics and rhetoric of health is they tend to pursue an instrumentalist logic, with health care finance dominating debate in Washington DC. The economics of health care is one thread running through the volume, but we approach health politics as a varied landscape with different inflection points and scales, ranging from the individual’s place in local and regional communities to the responsibilities of the nation state at a time when questions of planetary survival are more urgent than ever. A number of chapters – especially those in the final part of the volume on public and global health – suggest that we need to develop an ecological approach if we are to effectively move beyond operational questions about the coordination of health care to address existential and rights-based questions that recognize health as a basic shaping force of lives, identities and communities. During the writing of this book, the global emergency of Covid-19 enveloped most countries on the planet and swiftly became the number one priority for many national governments and the international health community. Consequently, some chapters turn to the Covid-19 pandemic as a crucible not only for understanding the strengths and frailties of current health care systems, but also for addressing the colliding crises that Joe Biden described in his US presidential campaign of 2020, in which he linked economic instability, racial injustice and environmental fragility to a mounting cross-border health care crisis.22 This emphasis on multiple crises is poignant at the turn of the 2020s, given the 820,000 reported American deaths by the end of 2021 among 5.4 million deaths recorded globally following a confirmed case of Covid-19, the as-yet unfathomable mid-term damage to people’s mental and physical health, and the re-emergence of activist movements in search of racial, gender and environmental justice. However, this multiple-crisis discourse is not entirely new, with figures like the Canadian leftist thinker Naomi Klein arguing in 2017 that ‘ours is an age when it has become impossible to pry one crisis apart from all the others. They have all merged, reinforcing and deepening each other.’23 Crises demand action but also
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analysis, pushing us to recognize deep social, cultural and economic interconnections, long and often occluded histories that can help explain current realities, and systems of power, inequity and what Klein calls ‘disposable peripheries’ that modern health care systems often fail to reach.24 This kind of analysis can illuminate how concerns that are often marginalized as identity politics are inextricable from questions of care, health and medical knowledge. The historical coincidence of the Covid-19 pandemic and the Black Lives Matter movement has drawn mainstream attention to racial inequities in health and medical care. Data from the Centers for Disease Control and Prevention (CDC) shows that race is a risk factor for Covid-19, with death rates for American Indian/Alaska Native, Black, Hispanic and Latinx people at least twice as high as those for their white counterparts.25 As Akilah Johnson noted in June 2020, ‘when speaking out against the loss of black lives, it is tough to separate those who die at the hands of police from those who die in a pandemic that has laid bare the structural racism baked into the American health system’.26 These realities and entanglements have shone a spotlight on racial disparities in living standards and discrimination in medical institutions. The conversation about the intersection of race and health also demands a reckoning with the historical biases that structure medical and scientific knowledge. When Biden appointed the sociologist Alondra Nelson to the role of deputy director for the White House Office of Science and Technology Policy in January 2021, she commented: ‘never before in living memory have the connections between our scientific world and our social world been quite so stark as they are today’, adding, ‘I believe we have a responsibility to work together to make sure that our science and technology reflects us.’27 Nelson’s appointment a year later to director is an encouraging sign that the relationship between society and science will be a shaping factor in federal policy of the early 2020s. Such a perspective stands in opposition to the widespread naturalization of the deaths of older people and disabled people during the pandemic. The omnipresence of the term ‘pre-existing conditions’ in media reporting on hospitalizations and deaths suggests that older people or those with chronic illness or disability are expendable – one of the ‘disposable peripheries’, to recall Klein’s phrase. Within the terms of this rhetoric, marginalized identities have been taken to confer a form of ontological vulnerability that precludes the possibility of care, and sometimes even of mourning. The naturalization of vulnerability also operates on both material and discursive levels, and underlines the urgency of social, cultural and historical research into the politics of health and medicine. Some obstacles to addressing these issues have been clear in the reinscription of culture wars debates onto new flashpoints of mask-wearing, physical distancing and vaccination. Such practices have been positioned as questions of tribal allegiance around matters of individual choice, rather than understood as strategies of solidarity and neighbourly care. The problem presents a conceptual challenge as well as a practical one. As the writer Eula Biss observes: the natural body meets the body politic in the act of vaccination, where a single needle penetrates both. The capacity of some vaccines to generate a collective immunity superior to the individual immunity produced by those same vaccines suggests that the politic has not only a body, but also an immune system capable of protecting it as a whole.28
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This way of conceptualizing immunity challenges the oppositional dichotomy of the individual and the collective that structures so much health policy, strategy and debate. The depth of the challenge can be gleaned in the impasse reached by conversations about whether masks protect the wearer or those around them, as if these modes of protection are mutually exclusive. At the same time, liberal diagnoses of anti- vaccination or anti-mask politics as the result of either right-wing allegiances or online misinformation risks overlooking the pressures of class stratification, in which homeworking and social distancing are much harder to access for working-class people, including those in precarious work. Moreover, the historical roots of what appears to be distrust in the medical establishment, including documented histories of exploitative medical experimentation on Black people and disabled people, must be central to any reconceptualization of health as a collective project. For instance, a study published in 2016 by Marcella Alsan and Marianne Wanamaker suggested that the disclosure in 1972 of the Tuskegee Study of Untreated Syphilis in the Negro Male, overseen by the US Public Health Service across a span of forty years, in which hundreds of Black men with syphilis were left untreated and uninformed of their diagnosis, is ‘correlated with increases in medical mistrust and mortality and decreases in both outpatient and inpatient physician interactions for older black men’.29 Such histories and their reverberations in the contemporary moment are addressed in a number of essays across this volume. The Covid-19 pandemic has undoubtedly intensified existing inequalities and amplified the violence of ongoing struggles for health and autonomy. In September 2021, the CDC announced that Covid deaths among pregnant women had hit a record high.30 In the same month, the state of Texas banned the vast majority of abortions under Senate Bill 8, which prohibits pregnancy termination after the six-week point – in real terms around four weeks after conception, and before most will have registered a missed period. The Texas ban intensified an already dire situation, in which the ostensible (if limited) right to abortion secured by the Roe v. Wade US Supreme Court decision of 1973 is undermined by restrictive laws and virtually non-existent access in many states. The urgency around the Texas ban has also foregrounded tensions in the movement for reproductive liberation, with national non-profits like Planned Parenthood and NARAL Pro-Choice America often pursuing policy-based top-down strategies, while local initiatives focused on direct interventions and the provision of support and solidarity to those seeking abortion.31 Beyond those chapters in the volume that directly address questions of reproductive rights and justice, debates about how best to respond to the Texas ban draw attention to broader relations – whether of tension, antagonism, collaboration or parallel working – between grassroots activist groups and national non-profits, not to mention between liberal policy interventions and leftist solidarity work. At the time of writing, the notion that identity politics is primarily a question of representation is under increased strain, as the pressures of the moment clarify how forms of gendered, racial and dis/abled identity are forged through struggles for survival, health and mutual care. With the Delta and Omicron variants still widespread in the Americas and parts of Europe, Africa, Asia and Australasia as we write, we do not intend for this volume to be anything close to the final word on Covid-19. Book-length studies have started to emerge that identify the often-hidden health inequalities and comorbidities uncovered by the pandemic, but it is still premature to judge the robustness of public health
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systems in the midst of a global emergency.32 Nor do we wish to reduce the historical, political, cultural and scientific entanglements raised by the exchange between Anthony Fauci and Rand Paul to a policy book about the need to improve international disease surveillance and pandemic preparedness whilst still protecting civil liberties and rights. Instead, we offer what Michael Stein and Sandro Galea call ‘uncomfortable conversations’ about pressing health topics, seeking to illuminate critical issues in the present through an analysis of the past, an endeavour we think is vital for shaping even-handed, responsive and sustainable policies.33 Taking seventy-five years as our timespan since the end of World War II – with backward glances to the New Deal 1930s, the post-Civil War years and the formation of the Republic – in the words of Charles Rosenberg it is the ‘very distance from the policy arena that makes the historian’s perspective so valuable’, to which we would add the range of disciplines and perspectives that this Edinburgh Companion to the Politics of American Health brings together.34 The thirty-five chapters fall into seven thematic parts that address in turn health communities, critical health conditions, children’s health, health institutions, federal health reforms, justice and ethics, and public and global health. The five chapters in each of these seven sections individually and in dialogue emphasize the diversity and plurality of health experiences in the United States, balancing national and transnational perspectives with the lived realities of individuals and communities that propel us far beyond biomedical conceptions of health. As we highlight in our introductory comments to each part, the volume aims to balance a top-down federal view of health politics with a horizontal appraisal of health structures and institutions within and beyond the nation-state, together with a bottom-up view of how communities see their health and the efforts of local organizers to improve access, safeguard rights and encourage citizen participation. In recognizing that public health benefits from a mix of vertical, horizontal and grassroots discourses, communications and interventions, these multiple angles prevent us from seeing health as just the province of government and a capitalist health care system that places ‘restrictive boundaries around what politics is’.35
Notes 1. ‘The Path Forward: A Federal Perspective on the Covid-19 Response’, Hearing of the Senate Committee for Health, Education, Labor and Pensions Committee: https:// www.help.senate.gov/hearings/the-path-forward-a-federal-perspective-on-the-covid-19- response (accessed 20 August 2021). 2. See, for example, ‘India’s Outbreak Is a Danger to the World. Here’s Why’, New York Times, 2 May 2021 (updated 14 May 2021). 3. Anthony Fauci’s testimony at this 20 July 2021 congressional hearing is available at https:// www.help.senate.gov/imo/media/doc/Fauci10.pdf (accessed 20 August 2021). 4. Rand Paul was quoting the Rutgers University molecular biologist Richard E. Bright at this point in his opening statement: see https://www.help.senate.gov/hearings/the-pathforward-a-federal-perspective-on-the-covid-19-response (starting 52:36). For the paper to which Rand referred see Ben Hu et al., ‘Discovery of a Rich Gene Pool of Bat SARSrelated Coronaviruses Provides New Insights into the Origin of SARS Coronavirus’, PLoS Pathogens, 13(11), 30 November 2017: https://pubmed.ncbi.nlm.nih.gov/29190287/ (accessed 20 August 2021). For responses to the role of EcoHealth Alliance in ‘risky science’
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5. 6.
7.
8. 9. 10. 11.
12.
13.
martin halliwell and sophie a. jones see the 5 May 2020 GM Watch article: https://gmwatch.org/en/news/latest-news/19392expert-attacks-ecohealth-alliance-s-involvement-in-really-risky-bat-coronavirus-researchin-wuhan-labs (accessed 20 August 2021). Donald J. Trump, Coronavirus Task Force Press Briefing, the White House, 15 April 2020: https://millercenter.org/the-presidency/presidential-speeches/april-15-2020-press-briefingcoronavirus-task-force (accessed 1 September 2021). See, for example, Rand Paul’s book Government Bullies: How Everyday Americans Are Being Harassed, Abused, and Imprisoned by the Feds (New York: Center Street, 2012). Paul was the second signatory of a 20 May 2021 letter sent by the Wisconsin Republican senator Ron Johnson to the then NIH director Francis Collins demanding information on gain of function research: https://www.ronjohnson.senate.gov/services/files/DD184FFDF00A-4AB1-A985-2CE26681D47F (accessed 11 October 2021). Fauci and Paul reprised their barbed exchange in January 2022 (in addition to a conspiratorial perspective on gain-of-function research presented by Kansas Senator Roger Marshall) when the Senate committee reconvened to assess the impact of the Omicron variant: Senate Committee on Health, Education, Labor, and Pensions, ‘Addressing New Variants: A Federal Perspective on the COVID-19 Response’, 11 January 2022, starting at 1:19:28, 3:05:52 (both Rand) and 2:47:19 (Marshall): https://www.help.senate.gov/hearings/addressing-new-variants-afederal-perspective-on-the-covid-19-response (accessed 14 January 2022). ‘Hunter Biden Invested in a Pandemic Firm Collaborating with Daszak’s EcoHealth and the Wuhan Lab’, National Pulse, 28 June 2021: https://thenationalpulse.com/exclusive/ hunter-biden-invested-in-ecohealth-wuhan-partner. For a broader context see Nicholson Baker, ‘For Decades, Scientists Have Been Hot-Wiring Viruses in the Hopes of Preventing a Pandemic Not Causing One. But What If . . .’, New York, 4 January 2021: https://nymag. com/intelligencer/article/coronavirus-lab-escape-theory.html (both accessed 28 August 2021). For differing media perspectives on the exchange see the op-eds ‘What the Fight between Anthony Fauci and Rand Paul Is Really About’, Washington Post, 22 July 2021, and ‘Anthony Fauci, Rand Paul and Wuhan’, Wall Street Journal, 25 July 2021. See Jessica Wang, American Science in an Age of Anxiety: Scientists, Anticommunism, and the Cold War (Chapel Hill: University of North Carolina Press, 1999), 200, 280, 283. ‘How Red-Baiting in Medicine Did Lasting Harm to Americans’ Health Care’, Washington Post, 12 June 2019. On the investigations see ‘A Science in the Shadows’, Washington Post, 26 August 2021, and ‘NIH Documents Provide New Evidence U.S. Funded Gain-of-Function Research in Wuhan’, The Intercept, 10 September 2021: https://the/intercept.com/2021/09/09/cov id-origins-gain-of-function-research (accessed 11 September 2021). YouTube temporarily suspended Paul’s account in August 2021 for disputing the efficacy of masks as a mitigation measure against the spread of Covid-19 in a manner that fell under the category of medical misinformation. World Health Organization, ‘Novel Coronavirus (2019-nCov) Situation Report – 13’, 2 February 2020: https://www.who.int/docs/default-source/coronaviruse/situation-re ports/20200202-sitrep-13-ncov-v3.pdf. For the Covid-19 context see ‘W.H.O. Fights a Pandemic besides Coronavirus: An “Infodemic”’, New York Times, 6 February 2020. For the SARS infodemic of 2003 see David J. Rothkopf, ‘When the Buzz Bites Back’, Washington Post, 11 May 2003. Charles E. Rosenberg, ‘Anticipated Consequences: Historians, History, and Health Policy’, in History and Health Policy in the United States: Putting the Past Back In, ed. Rosemary A. Stevens, Charles E. Rosenberg and Lawton R. Burns (New Brunswick, NJ: Rutgers University Press, 2006), 13.
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14. Clare Bambra, Debbie Fox and Alex Scott-Samuel, ‘Towards a Politics of Health’, Health Promotions International, 20(2), February 2005, 189. See also Alex Scott-Samuel, ‘The Politics of Health’, Community Medicine, 1, 1979, 123–6. 15. See Daniel E. Dawes, The Political Determinants of Health (Baltimore, MD: Johns Hopkins University Press, 2020). 16. On the inseparability of social and political determinants see Kathryn Strother Ratcliff, The Social Determinants of Health: Looking Upstream (Cambridge: Polity, 2017). 17. Danielle T. Raudenbush, Health Care Off the Books: Poverty, Illness, and Strategies for Survival in Urban America (Berkeley: University of California Press, 2020), 3. 18. Dawes, The Political Determinants of Health, 166. 19. Anne Whitehead and Angela Woods, eds, The Edinburgh Companion to the Critical Medical Humanities (Edinburgh: Edinburgh University Press, 2018), 7. 20. Juliana Menasce Horowitz, Ruth Igielnik and Rakesh Kochhar, ‘Trends in Income and Wealth Inequality’, Pew Research Center, 9 January 2020: https://www.pewresearch.org/ social-trends/2020/01/09/trends-in-income-and-wealth-inequality (accessed 3 September 2021). 21. For these statistical comparisons see the World Bank data (up to 2018) at https://data.world bank.org/indicator/SH.XPD.CHEX.GD.ZS; the Organisation for Economic Co-operation and Development ‘Health Spending’ data (up to 2020): https://data.oecd.org/healthres/ health-spending.htm; and the World Health Organization report Global Spending on Health: Weathering the Storm, 10 December 2020: https://www.who.int/publications/i/ item/9789240017788 (both accessed 3 September 2021). 22. ‘Crisis’ was a constant refrain in Biden’s campaign speeches of autumn 2020 and inflected his inaugural address of 20 January 2021: https://www.presidency.ucsb.edu/documents/ inaugural-address-53 (accessed 3 September 2021). 23. Naomi Klein’s keynote speech at the Labour Party Conference, Brighton, UK, 26 September 2017: https://labour.org.uk/press/author-naomi-klein-speech-to-labour-party (accessed 3 September 2021). For discussion see Martin Halliwell, American Health Crisis: One Hundred Years of Panic, Planning, and Politics (Berkeley: University of California Press, 2021), 15–16. 24. Naomi Klein, This Changes Everything: Capitalism vs. the Climate (London: Penguin, 2015), 169–70. For a decolonizing approach to modern medical systems see Rupa Marya and Raj Patel, Inflamed: Deep Medicine and the Anatomy of Injustice (London: Allen Lane, 2021). On the multiple resonances of the pandemic see the special issue ‘The Cultural Politics of Covid-19’, Cultural Studies, 34(2–3), May 2021; Sari Altschuler, ‘After the Outbreak: Narrative, Infrastructure, and Pandemic Time’, Resilience: A Journal of the Environmental Humanities, 8(3), Fall 2021, 126–55. 25. Centers for Disease Control and Prevention, ‘Risk for COVID-19 Infection, Hospitalization, and Death by Race/Ethnicity’, updated 9 September 2021: https://www.cdc.gov/coronavi rus/2019-ncov/covid-data/investigations-discovery/hospitalization-death-by-race-ethnic ity.html (accessed 15 October 2021). The editors have chosen to capitalize the term ‘Black’ and lowercase ‘white’ when used in their racial, ethnic or cultural senses. In recognition of a diversity of approaches to the politics of grammar, we have not imposed a standard rule on this across the volume, beyond consistency within chapters. 26. Akilah Johnson, ‘On the Minds of Black Lives Matter Protesters: A Racist Health System’, ProPublica, 5 June 2020: https://www.propublica.org/article/on-the-minds-of-black-livesmatters-protestors-a-racist-health-system (accessed 15 October 2021). 27. Nidhi Subbaraman, ‘“Inspired Choice”: Biden appoints Sociologist Alondra Nelson to Top Science Post’, Nature, 21 January 2021: https://www.nature.com/articles/d41586021-00159-z (accessed 15 October 2021). 28. Eula Biss, On Immunity: An Inoculation (London: Fitzcarraldo Editions, 2014), 132.
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29. Marcella Alsan and Marianne Wanamaker, ‘Tuskegee and the Health of Black Men’, Quarterly Journal of Economics, 133(1), February 2018, 407–55. 30. See Robert Towey, ‘CDC Director Says Covid Deaths among Pregnant Women Peaked in August’, CNBC, 30 September 2021: https://www.cnbc.com/2021/09/30/cdc-direc tor-says-us-covid-deaths-among-pregnant-women-peaked-in-august.html (accessed 15 October 2021). 31. See, for example, Marie Solis, ‘The Limits of the Mainstream Abortion Rights Movement’, Jezebel, 7 October 2021: https://jezebel.com/the-limits-of-the-mainstream-abortion-rightsmovement-1847810562 (accessed 15 October 2021). 32. See, for example, Clare Bambra, Julia Lynch and Katherine E. Smith, The Unequal Pandemic: COVID-19 and Health Inequalities (Cambridge: Polity, 2021). For the point about premature judgements see Anthony Fauci interview on CNN’s State of the Union, 12 April 2020. 33. Michael D. Stein and Sandro Galea, Pained: Uncomfortable Conversations about the Public’s Health (New York: Oxford University Press, 2020). 34. Rosenberg, ‘Anticipated Consequences’, 29. 35. Bambra, Fox and Scott-Samuel, ‘Towards a Politics of Health’, 190. On vertical versus horizontal approaches on an international scale see Chelsea Clinton and Devi Sridhar, Governing Global Health: Who Runs the World and Why (Oxford: Oxford University Press, 2017).
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Geography, Community and American Health
Part I Geography, Community and American Health
I
n October 2011, at a summit in Rio de Janeiro, Brazil, the World Health Organization (WHO) released the Rio Political Declaration on Social Determinants of Health, its strongest statement yet of the need to tackle health inequities both ‘within and between countries’. Focusing on the WHO’s commitment to health as a fundamental right rather than a privilege, the Rio Declaration recognized that to eliminate inequities would require the sustained ‘engagement of all sectors of government, of all segments of society, and of all members of the international community’. By viewing social determinants in both economic and psychosocial terms, the declaration made three policy recommendations: ‘to improve daily living conditions; to tackle the inequitable distribution of power, money and resources; and to measure and understand the problem and assess the impact of action’.1 Set against the World Health Assembly’s adoption of this policy framework in 2012, the five essays of this volume’s opening section explore the material conditions and distribution of resources that underpin the health challenges facing diverse communities within the United States. The focus on geography, immigration and race in this section calls for what the Rio Declaration termed ‘an intersectoral approach’ to analysing how social groups are classified with respect to life expectancy, comorbidities and access to health care. Ensuring that health data is adequately granular is often the most significant challenge for assessing how inequities are shaped by locality, citizenship and identity. With this in mind, the five essays adopt intersectoral approaches – historical, sociological, geographical, legal and community-based – and offer different kinds of evidence to highlight how US health care at a systemic level routinely fails to serve poor and less advantaged communities. As well as drawing correlations between environmental pressures and health challenges in localities ranging from Black communities living in South Side Chicago to poor isolated places in the Rocky Mountain West to the immigrant communities of Los Angeles County and Miami, these five chapters address the ways in which health activism can ‘close the gap’ (to evoke the title of a 2008 WHO report) by exposing health inequities and stimulating legislative and operational changes that might redress historically ingrained and newly emerging exclusions.2 In the first chapter, Andrew Highsmith traces how racial and economic fault lines of the urban experience shaped post-World War II health disparities. Bridging the systemic challenges faced by the Black communities of Flint, Michigan (as discussed in his 2015 book Demolition Means Progress) and the broader racial inequities he traces through the twentieth century in his forthcoming A Toxic Republic, Highsmith’s
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chapter examines the structures of racial and spatial health inequality in the postwar metropolis. He takes three examples to show how racial health inequities and the maldistribution of urban medical care persisted even after the health care reforms and new social movements of the 1960s. The first example explores the toxic challenges faced by communities of colour across a range of cities, including lead paint in older homes, unsafe working conditions, environmental toxins exacerbated by discriminatory waste disposal policies, and the ways in which urban redevelopment damaged access to medical facilities for poor inner-city neighbourhoods. Highsmith then identifies how the segregation of health care practices and within the medical profession itself in the postwar period led to worsening doctor–patient ratios, leaving hospitals and clinics with limited resources to struggle to cater to underserved communities. In his final example, Highsmith identifies broader spatial impediments that limited access to good urban health care, particularly processes of suburbanization that prompted an exodus of doctors and the closure of many inner-city medical facilities. It is in the exclusionary structures of postwar health care that Highsmith locates the origins of many contemporary urban health inequities. Jessica Ulrich-Schad, Cynthia Duncan and Kristen Koci explore these fault lines from a sociological perspective by switching attention in the second chapter to the challenges facing rural American communities. Looking broadly at the impact of economic restructuring on rural health, the chapter focuses on the post-1990 period, mobilizing primary and secondary data to compare the health experiences of poorer and more affluent communities. Identifying demographic trends, the availability of work and the affordability of health insurance as key factors that have led to a general worsening of rural health care, the chapter analyses three different types of places to illustrate the variety of rural experiences. Drawing from a survey of 17,000 rural residents (interviewed between 2007 and 2011), as well as the research that informed Cynthia Duncan’s 1999 book Worlds Apart: Why Poverty Persists in Rural America, the chapter offers examples of ‘amenity rich’, ‘transitioning’ and ‘chronically poor’ communities in the Rocky Mountain West, New England, Appalachia and the Mississippi Delta. The authors take a population studies approach to poverty and poor health, but also draw upon comments of interviewees from different ethnic backgrounds to capture a ‘fuller perspective of rural places’, and conclude by considering the effects of the Covid-19 pandemic on already economically challenged communities. Beatrix Hoffman focuses on the political crossroads of immigration and health in the third chapter, moving away from spatially defined geographies of the first two chapters to consider the historical and contemporary immigrant experience in the United States. Starting with the so-called ‘immigration crisis’ of the 1970s, and developing the research informing her 2012 book Health Care for Some, Hoffman considers the political discourses that swirl around ‘unauthorised immigrants’ and debates about what health rights, if any, they can expect. Shifting between federal, state and county perspectives – and with a particular focus on California and Arizona – the chapter considers why immigration has weighed so heavily on political debates about health care, leading Hoffman to conclude that a fiscal agenda is routinely prioritized over public health and humanitarian perspectives. The chapter combines historical and legislative approaches, showing how the 1986 Immigration Reform and Control Act established waiting periods for Medicaid eligibility, while failing in its objective to curb unauthorized immigration, and the 1996 Personal Responsibility and Work Opportunity
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Reconciliation Act placed further restrictions on ‘authorized immigrants’ ability to access benefits’. Hoffman ends by looking at why federal health care policy often collides with the politics of immigration through the lens of the Patient Protection and Affordable Care Act (ACA) of 2010. She sets Obama’s reformist ambitions, the ACA’s mixed messages on immigration and the backlash of the Tea Party against a reinvigorated immigrant rights movement to illustrate the political entanglements of health care and immigration. The final two chapters propel the themes of the first three essays towards a focus on the health experiences of, and the health barriers faced by, Latinx communities and American Indian tribes. The fourth chapter by Rocío Calvo and Victor Figuereo contrasts the heterogeneity of the Latinx population in the US to the ways that it tends to become either homogenized within the arena of health care or politicized when it comes to immigration debates. Focusing on the difficulties of accessing employer- sponsored health insurance and the discrimination Latinxs often encounter when trying the navigate the health care system, the authors develop their intersectoral research conducted in Boston and Miami to discuss questions of language, racial profiling, mental health and neighbourhood dynamics. They also consider the ‘Hispanic Health Paradox’, which problematizes this narrative of systemic discrimination by positing an inverse correlation between good health and economic status among Latinxs, before considering cultural tensions between traditional and modern health care, with folk medicine often proving a more congruent and accessible alternative. However, Calvo and Figuereo also argue that the health care system can actually become an agent of advancement for Latinx communities, as long as it takes its ‘moral and political obligations towards the most vulnerable’ as seriously as its fiscal underpinnings. The final chapter of this opening section turns to the longer history of systemic discrimination faced by American Indians/Alaska Natives when trying to access health care. Developing her work on the structural and social determinants of American Indian health, Margaret Moss argues that the gap in access is the result of ‘purposeful, targeted and sustained policies by the federal government’ that have led to poor health and life expectancy within many indigenous communities. This view of structural violence is illuminated when considering the eligibility barriers of the Indian Health Service, established in 1955 as an operating division of the US Department of Health, Education, and Welfare (renamed the Department of Health and Human Services in 1979). Moss argues that the US federal government has routinely breached Article II of the United Nations Convention on the Prevention and Punishment of the Crime of Genocide, signed in 1948 and intended to prevent a repeat of the racialized atrocities of the preceding two decades. Showing how these breaches of the article’s five tenets have led to what Moss calls ‘intergenerational trauma’ – including the removal of tribes, the transfer of native children and the unconsented sterilization of Indian women – the chapter ends by contrasting ‘the iron triangle’ (which connects the executive and legislative branches of government to interest groups) with the holistic symbol of the medicine wheel (which interlinks the spiritual, emotional, physical and mental aspects of health). This effort to imagine a more culturally congruent form of health care links to the need explored in all five chapters to look beyond the fiscal and bureaucratic aspects of the modern US health care system and to transcend the politics of exclusion by shaping a more equitable and rights-based model of health.
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Notes 1. World Health Organization, ‘Rio Political Declaration on Social Determinants of Health’, Rio de Janeiro, Brazil, 21 October 2011: https://www.who.int/sdhconference/declaration/ Rio_political_declaration.pdf?ua=1 (accessed 1 September 2021). See also Michael Marmot and Richard G. Wilkinson, Social Determinants of Health, 2nd edn (Oxford: Oxford University Press, 2005) and Kathryn Strother Ratcliff, The Social Determinants of Health: Looking Upstream (Cambridge: Polity, 2017). 2. Closing the Gap in a Generation: Health Equity through Action on the Social Determinants of Health (Geneva: World Health Organization, 2008).
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1 Health and Inequality in the Postwar Metropolis Andrew R. Highsmith
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n the winter of 1960, protests erupted in Chicago after the death of Albert Marshall, a Black factory worker from the city’s South Side. The tragedy began in the wee hours of 30 January, when Marshall and a fellow Black pedestrian named Roosevelt Wright were critically injured after being struck by white motorist Frank Angotti, who was apprehended after fleeing the scene. Upon arriving at the crash site, emergency workers transported Marshall and Wright to nearby Roseland Hospital, a nominally integrated facility. However, officials at Roseland refused to treat the two victims, claiming the hospital was full. While staff members arranged to have the men moved fifteen miles away to Cook County Hospital – the public facility where most of the city’s Black and Brown residents received care – Marshall and Wright sat largely unattended for three hours. Wright, despite suffering from severe trauma, spent that time in a hallway. Although the more seriously wounded Marshall – with a broken back, cracked skull and internal bleeding – was taken to Roseland’s emergency room, he received only superficial care there. Eventually, police loaded the two men into a squad car and drove them to Cook County where they received treatment. Wright barely survived the ordeal, but Marshall died soon after arriving at Cook County.1 Black Chicagoans were outraged by Marshall’s death. For months, activists regularly marched against the discriminatory policies at Roseland and other area hospitals. Protesters also condemned the handling of Angotti, whom prosecutors charged only with two minor offences. In the end, though, the demonstrations were largely unsuccessful. Angotti never faced any serious criminal charges. Furthermore, the victims’ families did not receive any compensation, and officials from the city and area hospitals declined to make substantive policy changes in the wake of the incident. For many African Americans in Chicago, the message sent by municipal and health care officials was clear: Black lives were expendable.2 The cases of Albert Marshall and Roosevelt Wright embody a much larger history of racial health and health care inequality in the post-World War II American metropolis that is at the heart of this chapter. Like Angotti, ordinary whites of this era often devalued the lives of African Americans and other people of colour. So too did many members of the white medical establishment, along with numerous police officers, politicians and others in positions of power. Marshall’s death was not solely attributable to the callousness or individual racism of those who participated directly in the events of 30 January, however. The inequities that led to his death were also systemic in the
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sense that they sprang from a broader array of structural injustices that flourished in the nation’s metropolitan areas after World War II. During the war and its aftermath, the Second Great Migration of rural southerners brought millions of African Americans and other persons of colour to the nation’s urban centres in search of jobs, security, better health and first-class citizenship.3 But the northern and western cities that beckoned them were severely unequal places. Discriminatory housing, land use and municipal services policies confined many Black and Brown people to overcrowded, polluted and underserved neighbourhoods. At the same time, racism at work relegated many minorities to dangerous and low-paying jobs – positions that rarely included health benefits. Such inequities produced disparate patterns of sickness and injury within impoverished and segregated urban neighbourhoods, yet people of colour often struggled to obtain adequate medical care. Aside from the discrimination and poverty that kept many racial minorities uninsured, health care facilities were often segregated, forcing people of colour to rely heavily on public hospitals and other overburdened institutions for treatment. Barriers to health equity also stemmed from new metropolitan spatial formations. During the postwar era, millions of white Americans took advantage of federal subsidies and relocated from cities to racially homogeneous suburbs, bringing with them vast wealth and resources.4 With the federal government’s support, health care executives worked to capture this emerging market by building a raft of new suburban medical facilities. Over time, mass suburbanization combined with systemic disinvestment in urban communities of colour to harden racial and spatial divides. By the 1960s and 1970s, decaying neighbourhoods and shuttered factories and hospitals dotted cityscapes throughout the country – all signs of the nation’s gathering ‘urban crisis’.5 The new postwar spatial arrangements further contributed to negative health outcomes in urban minority communities. Although racial health disparities were among the most visible manifestations of American inequality, people of colour were not alone in suffering health penalties. Indeed, metropolitan health inequities occurred along multiple and often intersecting axes such as gender, class, sexuality, nationality and disability status, to name but a few.6 Women, for instance, experienced deleterious health outcomes due to gender discrimination in the workplace. Likewise, the poor often suffered from class-based penalties in the health care marketplace. Throughout the postwar era, good health and health care were severely maldistributed across the metropolitan landscape. Ultimately, inequities in health and health care produced waves of activism and reform that substantially benefited oppressed groups. During the 1960s, activists and liberal policy makers desegregated hospitals and enacted new health programs for the underserved. Likewise, women gained new employment opportunities and improved access to health care. Still, though, many of the larger structures of health inequality remained in place. People of colour and the poor continued to inhabit urban ‘medical wastelands’ and suffer disproportionately from diseases and violence.7 Incinerators and freeways still polluted impoverished urban neighbourhoods. And insurance discrimination against women and others persisted. Health equity thus remained an elusive goal, in part because inequality was often the result of deliberate policy choices. Over the past half-century, scholars have produced an impressive body of literature on the causes and consequences of health inequality in metropolitan America. Libraries are full of research on urban environmental pollution, segregation in
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hospitals, grassroots struggles for health equity, and a host of other subjects. Simply stated, scholarship on metropolitan health inequality has boomed over the past two generations – so much so that it would be virtually impossible to offer a comprehensive assessment of the subject in one brief study.8 Therefore, this chapter undertakes the more modest, but nevertheless important, goals of highlighting the state of health disparities at the close of World War II and analysing several key spheres in which postwar inequities took shape. At the heart of this chapter are three case studies – not of specific places, but rather of national processes that led to health inequalities in a range of local communities. The first focuses on the toxification of segregated urban environments, while the latter two address health care discrimination and the inequitable spatial allocation of medical resources. Although the focus in this chapter is on racial health disparities, parallel and intersecting inequities related to gender, class and other sociological categories also receive attention. Taken together, the three case studies point to the fact that health disparities, and battles over them, were foundational to the history of inequality in the postwar metropolis.
Health Inequality at the Dawn of the Postwar Era The United States that emerged from World War II was riven by deep divisions along lines of race, class, gender and other markers of difference. In December 1946, just months after a mass lynching of African Americans in Georgia had underscored the precariousness of Black lives, President Harry Truman formed a committee to investigate the national record on civil rights.9 A year later, Truman’s panel released To Secure These Rights, a sobering look at racial inequality in the United States. With respect to health, committee members uncovered alarming evidence of racial disparities. At war’s end, mortality rates among African Americans, Native Americans, Asian Americans and other minority groups were significantly higher than those for whites. As committee members showed, racial differentials in disease rates played an important role in driving mortality disparities, but so too did broader patterns of inequality. Racialized poverty, for example, left many minorities unable to afford decent housing, nutritious foods or basic health services. Likewise, segregation confined many persons of colour to unhealthy environments. Truman’s appointees also highlighted widespread discrimination in the provision of health care. This included segregated hospitals, discriminatory education policies that led to doctor and nurse shortages and a host of other barriers. American society, committee members concluded, had failed to ensure health equity for all.10 Health and health care disparities related to class, gender and other categories were also pervasive in 1940s America. Although women’s mortality rates were lower than men’s, they nonetheless faced blatant gender discrimination in health care and most other spheres of life. As an example, workplace discrimination kept most women locked in low-paying jobs with limited benefits, while insurers, for their part, routinely denied coverage to women, especially in the area of reproductive health.11 The urban poor, too, faced health obstacles. People of lower socioeconomic status generally suffered from poorer health and died younger than the wealthy, in part because they could not afford medical care.12 As in most other facets of American life, race, class and gender interacted constantly to shape divergent health outcomes.
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By the close of World War II, social cleavages in health were increasingly refracted in the organization of metropolitan space. On average, suburbanites enjoyed better health and longevity than urban dwellers. With respect to both infectious and chronic diseases, including tuberculosis, pneumonia, cardiovascular disorders and cancer, postwar death rates were higher in cities than in suburbs. Deaths by violence, too, were more common in cities than in suburban areas.13 Over time, such disparities led scholars to posit the existence of an ‘urban health penalty’ deriving from the concentration of disadvantaged groups in unhealthy city environments.14 While there can be little doubt that, overall, significant postwar health gaps existed between cities and suburbs, the two never existed in a binary relationship. Both cities and suburbs came in countless varieties. Wealthy white suburbanites enjoyed significant health advantages over residents of impoverished urban ghettoes and barrios. At the same time, though, poor, working-class and majority-minority suburbs often fared worse than cities in public health matters. Moreover, postwar cities were diverse places that included a range of neighbourhoods, some wealthy and healthy, others much less so. Throughout the latter twentieth century, a variety of socioeconomic divisions interacted with place-based inequalities to shape health outcomes in ways that belied urban–suburban dichotomies.15
Toxic Metropolis For the millions of people who migrated to American cities after World War II, urban living presented a mix of opportunities and challenges. On the one hand, many migrants were able to obtain gainful employment and a degree of socioeconomic mobility. On the other, postwar cities could be unhealthy and dangerous places, particularly for poor persons of colour. To be sure, rampant racial discrimination and segregation exposed marginalized groups to disproportionately noxious living and work environments.16 Historically, America’s persistent residential colour line has played an outsized role in maintaining health disparities. Throughout much of the twentieth century, whites achieved residential segregation through restrictive housing covenants, violence and many other means. Even as federal housing policies implemented during the 1930s enabled whites to purchase suburban homes, mortgage redlining kept most Black and Latinx people within impoverished urban neighbourhoods. Working alongside public policies that encouraged the decentralization of business, federal housing programs funnelled billions of dollars in wealth and taxes from cities to suburbs, which further eroded the quality of life in urban centres.17 Redlining also produced numerous environmental and health risks. In Los Angeles, for example, redlining kept many Black and Latinx residents locked in segregated neighbourhoods that were heavily polluted by the region’s oil industry.18 Redlining and other segregationist mechanisms contributed substantially to what scholar Rob Nixon has called ‘slow violence’, or that which ‘occurs gradually and out of sight’, against disenfranchised groups.19 Segregation exposed communities of colour to a multitude of environmental dangers, psychic stressors and other health risks. An examination of the social epidemiology of childhood lead poisoning is indicative. In addition to its use in water delivery systems and gasoline, lead was a key ingredient in residential paints prior to the 1970s. Lead-based colourants were omnipresent in
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the older homes that abounded in impoverished urban areas. As city homes deteriorated, lead paint became a major public health problem. When lead paint peels, it forms sweet-tasting chips that appeal to many children, particularly those who are undernourished. Once ingested, however, lead causes a host of ill effects ranging from anaemia to kidney damage, and even death. By the mid-twentieth century, large numbers of American children, particularly those residing in poor urban neighbourhoods of colour, were experiencing the slow violence of lead exposure.20 The postwar decades witnessed a massively unequal distribution of environmental toxicity across the metropolitan landscape. While restrictive land use codes shielded many middle-class white suburban communities from the health risks of smokestacks and landfills, industrial suburbs and urban neighbourhoods of colour seldom benefited from the same protections.21 In San Antonio, Texas, for instance, the 1938 zoning code helped to inundate Black and Mexican American enclaves with meatpacking plants, junkyards and other polluting businesses. As elsewhere, the industrialization of San Antonio’s minority neighbourhoods contaminated the air, soil and water with toxins such as arsenic, benzene and hexavalent chromium. Studies conducted in the 1990s on San Antonio’s heavily African American east side – one of the areas zoned for industry – revealed striking health disparities related to cancer, asthma and other conditions caused by environmental pollution.22 Corporate and municipal waste disposal policies had a similarly harmful effect on communities of colour. According to a landmark 1980s study sponsored by the United Church of Christ, racial minorities were significantly more likely than whites to reside near commercial hazardous waste facilities.23 In the case of Houston, city and corporate officials saturated Black neighbourhoods – some urban, others suburban – with dangerous waste disposal establishments. Between the 1920s and the 1970s, nearly all of the area’s sanitary landfills and solid waste incinerators were located in predominantly Black communities.24 As scholars Mary Harmon and Kathryn Coe have shown, individuals residing near hazardous waste sites have elevated rates of cancer, congenital abnormalities and respiratory ailments.25 Ironically, discriminatory waste disposal policies did not ensure that minority communities benefited from adequate sanitation services. Across the postwar urban landscape, in fact, deficient municipal waste collection and code enforcement produced major garbage and pest control problems. In 1968, members of President Lyndon Johnson’s National Advisory Commission on Civil Disorders reported on ‘grossly inadequate’ trash services in urban neighbourhoods of colour. As pests multiplied in impoverished urban areas, illnesses such as rat-bite fever – of which there were thousands of cases annually in the 1960s – became potent symbols of inequality.26 Public officials also failed to provide sufficient recreational opportunities for many people of colour, which further undermined public health.27 Where recreation options existed, they were often segregated. For example, municipal pool operators often banned swimmers of colour or restricted their entry to certain days of the week. Such was the case in the working-class suburb of San Bernardino, outside Los Angeles, where exclusionary pool regulations forced Chicano/a and Black swimmers to use the dangerous Santa Ana River as a recreation area.28 Crime and other acts of violence committed by both civilians and police officers constituted additional threats to public health in minority communities. Across the United States, the poor and people of colour living in cities and distressed suburbs
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experienced rates of crime, police brutality and incarceration that were among the nation’s highest. In Chicago, for instance, crime figures in low-income Black neighbourhoods were up to thirty-five times as high as in wealthy white areas. Chicago was no exception, though, as surging crime, police violence and imprisonment rates in the late 1960s and beyond took lives, instilled fear and imperilled health in minority communities. In 1968, hundreds of tenants from Baltimore’s Gilmor Homes public housing project went so far as to submit a petition to the city’s mayor demanding increased protection from violence.29 During the postwar era, reformers looked to ‘slum clearance’ and public housing to address the appalling living conditions in many cities. Between 1949 and 1973, federal urban renewal projects cleared approximately 2500 neighbourhoods in nearly a thousand cities nationwide. In reality, however, urban renewal often exacerbated inequality.30 Moreover, overcrowding, inadequate maintenance and a host of other problems contributed to the rapid deterioration and contamination of public housing complexes. At Baltimore’s Cherry Hill Homes, for example, residents in the 1960s contended with a nearby trash incinerator and the use of toxic insecticides within the complex. According to one tenant organizer, the poor conditions at Cherry Hill led to ‘countless cases of respiratory infections and allergies’.31 In many cases, urban renewal also resulted in the inequitable distribution of health care resources. Across the country, urban medical centers were often the beneficiaries of redevelopment projects. In Ohio, for instance, federal renewal funds allowed the Cleveland Clinic to expand into neighbouring Black enclaves. Nonetheless, because Cleveland’s medical center catered to a largely wealthy and white clientele and hired few Black employees, its expansion provided only limited community benefits.32 Even worse, at times redevelopment destroyed vital medical facilities. As an illustration, in Detroit urban renewal and freeway construction resulted in the closure of numerous Black-owned hospitals. According to African American Detroiter Ophelia Northcross, redevelopment negatively affected ‘every single [B]lack hospital’ in the city.33 Mistreatment in the workplace contributed in equal measure to racial health disparities. In Gary, Indiana, home to the US Steel Corporation, discrimination led to the concentration of Black and Mexican American workers in dangerous jobs where they ‘bore a disproportionate burden of environmental hazards’.34 As historian Monica Perales has shown, industrial smelting operations in the heavily Mexican American city of El Paso, Texas, poisoned workers and neighbouring barrios, leading to a host of ailments.35 By 1968, workplace health and safety concerns had garnered international attention in the wake of the deaths of two Black sanitation workers in Memphis, Tennessee, who were crushed in a malfunctioning trash compactor. The deaths in Memphis contributed to a major sanitation strike that linked labour activism with health, civil rights and environmental struggles.36 Though located far away from urban centres, rural communities were thoroughly entangled in processes of metropolitan development.37 In order to thrive, metropolitan areas required large quantities of food, electric power and other resources. Often, city dwellers procured those commodities from the countryside, but at great human and environmental costs. In the postwar agricultural sector, approximately a million migrant labourers worked to provide food for the nation. According to federal reports, these workers – the majority of whom were Latinx, Filipino/a or Black – suffered from grossly substandard housing and sanitation facilities. Because of their low pay
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and itinerant status, most farm workers could not afford private insurance and were ineligible for many government health programs. In 1952, witnesses in a federal hearing reported that migrant workers’ disease rates far surpassed those in the general population – a disparity due primarily to unsafe working conditions and ‘woefully lacking’ health services.38 At times, metropolitan growth endangered Indigenous communities. Here, the experiences of the Navajo Nation are illustrative. As historian Andrew Needham has documented, Navajo workers and resources enabled the postwar rise of the Sunbelt. In order to fuel the growth of cities such as Phoenix, corporate and public officials established numerous coal-burning power plants on or near Navajo lands. The results were major increases in respiratory diseases such as asthma among Navajos residing near energy-producing areas.39 Altogether, persistent inequities in housing, land use, employment, criminal justice and other areas sustained marked health disparities in postwar America. Although such disparities were in evidence across the social spectrum, racial mortality differentials were among the starkest indicators of health inequality. In 1960, the average life expectancy for ‘nonwhite’ men at birth was just 61.1 years, over five years less than that for white men. With a life expectancy of 66.3 years, women of colour died on average approximately seven years before their white female counterparts. Similarly, infant and maternal mortality rates for racial minorities were between two and four times higher than for whites. Impoverished Americans also experienced negative health outcomes, registering significantly higher morbidity and mortality rates than wealthier people. The continuation of long-standing health disparities in postwar America pointed to a significantly greater need for medical care among underprivileged groups.40 In many cases, however, such needs went unmet.
Discrimination in Health Care The postwar decades were an era of unfulfilled promise in American health care. While new vaccines and other breakthroughs raised hopes of levelling the medical playing field, social, economic and spatial inequities continued to exert a negative influence on the health of marginalized Americans. Among the many health care barriers that disenfranchised Americans faced, discrimination in medical employment, financing and delivery proved to be especially potent. As in other employment sectors, discrimination in the health professions was pervasive in the postwar era. Most schools of medicine either refused to enrol women and racial minorities or maintained rigid admissions quotas.41 Minority women applying to nurse training programs also suffered from systemic discrimination.42 For the members of under-represented groups who did obtain professional degrees, discrimination continued following graduation. Medical internships and residencies were hard to come by for physicians of colour, especially women.43 In addition, professional societies often excluded minority doctors from membership, making it difficult for them to obtain staff positions and admitting privileges at local hospitals.44 As an illustration, a 1951 study of eight hospitals in Los Angeles found no Black, Asian American or Mexican American physicians listed as full-time staff members.45 Beyond limiting the career prospects of aspiring professionals, discriminatory medical training practices led to shortages of women and minority health providers.
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In postwar Baltimore, for instance, there were just 115 Black physicians in a city of nearly a million people. Although the number of African American physicians nationwide rose by over 10 per cent following the war, it was not enough to keep pace with Black population increases. In fact, between 1948 and 1960, the Black doctor–patient ratio nationwide worsened significantly.46 Since many white physicians either refused to see patients of colour or established practices far away from minority neighbourhoods, the shortage of Black and Brown doctors severely limited health care access in many communities. Hospitals were no less segregated than private medical practices. In many southern states, hospitals – including those operated by the federal Veterans Administration (VA) – were formally segregated. According to civil rights activist Clarence Mitchell, ‘we have had instances in which veterans suffering from critical ailments could not get into hospitals because no colored beds were available’.47 Such practices continued until 1954, when the VA abandoned its segregationist practices in the wake of the Supreme Court’s landmark Brown v. Board of Education ruling. Patient segregation in northern and western locales was only slightly less ubiquitous than in the South. In Kansas City, Missouri, for instance, city officials operated Jim Crow municipal hospitals until the late 1950s.48 Even within hospitals that were ostensibly integrated, administrators often upheld the colour line. To illustrate, at Detroit Receiving Hospital staff members would routinely turn away African American patients and ‘dump’ them on Black proprietary hospitals.49 At Missouri Pacific Hospital in St. Louis, Black patients received care in a basement ward located near the laundry facilities.50 According to Black physician Watson Young, who practised in Detroit after World War II, ‘everywhere was segregated’.51 With segregation so deeply entrenched in metropolitan health care systems, public, charitable and Black-owned hospitals shouldered much of the responsibility of caring for minority Americans. In Chicago, for instance, half the city’s Black residents – including thousands of insured patients – received their inpatient care at just one facility: Cook County Hospital.52 In effect, then, segregation contributed to overcrowding at minority-serving hospitals. In the 1950s, Cook County routinely operated at 125 per cent of its capacity while nearby community hospitals – most of them taxpayer subsidized – operated at just 60 per cent of their patient limit. Such overcrowding at minority-serving urban hospitals inevitably led to substandard care. At Cook County’s maternity ward, deliveries frequently occurred in hallways, and hospital officials routinely discharged new mothers and infants early to create additional bed space. The use of early discharges at Cook County likely played a role in shaping wide infant mortality disparities between Blacks and whites in Chicago.53 In St. Louis, segregation at specialty hospitals had a similarly harmful effect. Because most of the city’s mental health hospitals were whites-only facilities, Black psychiatric patients were often admitted to Homer G. Phillips Hospital, which lacked the personnel and resources to treat them. Similarly, segregation at the city’s Bernard Skin and Cancer Hospital forced numerous Black patients to seek oncological care at ill-equipped general hospitals. Such inequities may have contributed to the city’s racially skewed death rates from cancer. Although Black people comprised just 18 per cent of St. Louis’s early 1950s population, they accounted for nearly half of the city’s cancer deaths.54 Even if Black and Brown patients were able to access health care, in many cases they still dealt with abuse. Historians have written extensively on the infamous Tuskegee
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Syphilis Study (conducted between 1932 and 1972) and other research projects undertaken without the informed consent of minority subjects.55 In many instances, though, mistreatment was wholly unrelated to processes of inquiry. In Detroit’s public hospitals, to cite one case, some doctors reputedly withheld anaesthesia from uninsured mothers who delivered their babies vaginally, even in cases where painful episiotomies were performed. According to African American nurse Della Goodwin, the denial of anaesthesia served as a perverse form of birth control: ‘The city had a policy of no anaesthesia for these public patients. And we knew that was their contraceptive. If the mother’s in enough pain, maybe she won’t have another baby.’56 Systemic impediments to health equity also stemmed from discrimination in the employment and insurance marketplaces. To begin with, workplace discrimination made it difficult for women, racial minorities and others to obtain jobs with health coverage. Insurers played a part as well by engaging in discriminatory underwriting. In early 1950s Los Angeles, for example, one insurance company used application forms stating: ‘Eligibles: Any person of the Caucasian race between the age of 21 and 50.’57 Many health insurers also discriminated against women, either by refusing to issue policies or by insisting on higher premiums and gender-specific coverage exclusions. As a general rule, insurers levied higher premiums on groups with significant numbers of women and racial minorities, if they covered them at all.58 Like their counterparts in the home mortgage industry, health insurers also discriminated spatially by redlining entire neighbourhoods, especially impoverished urban areas with significant minority populations.59 Largely excluded from the market for standard insurance, many marginalized Americans purchased health coverage from weekly debit insurers, but such plans were often highly exploitive.60 For disenfranchised Americans, health risks abounded in the postwar metropolis. Throughout the country, deep-seated structures of inequality created toxic conditions within many minority neighbourhoods. Meanwhile, racism and gender discrimination within the employment, health care and insurance marketplaces made medical treatment simultaneously less available and more expensive for disadvantaged consumers. The operators of Black-owned hospitals often stepped in to fill the gap, but they did so with limited resources.61 In Durham, North Carolina, during the 1960s, for instance, officials at Lincoln Hospital regularly sounded alarms about the facility’s dilapidated physical condition.62 Like other minority-serving hospitals, Lincoln suffered at the hands of a bifurcated health care system that rewarded privileged groups with new investment while restricting it to others.
‘Runaway Hospitals’ and the New Geography of Health Inequality Of all the difficulties that underprivileged people faced in securing health care in metropolitan areas, spatial barriers were among the most significant. As evidenced by the case of Albert Marshall, the Black Chicagoan who died in 1960 after being turned away from one hospital and transported to another, segregation created both social and spatial obstacles to health care. Marshall’s case was not an isolated example, however.63 In postwar Chicago, more than twice as many Blacks as whites died annually en route to hospitals. One explanation is that many Black patients lived far away from the only hospitals that would admit them. In the case of the city’s remote Altgeld
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Gardens public housing project in the far South Side, residents had to travel nearly twenty miles to reach Cook County, passing by dozens of private hospitals along the way.64 In Chicago and other sprawling cities, the spatial barriers between underserved neighbourhoods and public hospitals were often so great that patients avoided seeking treatment unless the situation was dire.65 Spatial obstacles to medical treatment were also a function of new approaches to health care investment. In the postwar period, federal policies and private investment practices worked together to transform the spatial arrangement of health care. Prior to the war, much of the nation’s health care infrastructure was located within cities.66 Yet, as millions of Americans began migrating to suburbs, health care investment underwent a decades-long process of decentralization. Signs of this shift were evident before World War II, but the suburbanization of medical care gathered momentum during the postwar era.67 In many cases, the process of medical sprawl began with the migration of physicians and other health care providers from cities to suburbs. Some of these professionals continued to work in cities, but following the war physicians increasingly began setting up suburban practices, where they could work closer to home and secure a base of well-insured customers.68 While this shift benefited suburbanites, it led to doctor shortages in cities. For example, between 1950 and 1970, Chicago experienced a net loss of nearly 3000 doctors. For Black and Brown people residing in hard-hit urban neighbourhoods, the physician exodus often translated into prohibitively long commutes to medical clinics, more waiting for appointments and substandard medical care.69 Patterns of postwar hospital construction followed a similar trajectory.70 However, hospital suburbanization took place later, and on a smaller scale, than it did in housing and other sectors.71 Nevertheless, the postwar decades witnessed a surge in suburban hospital construction, particularly in the private sector. During the late 1950s, suburban hospital projects accounted for approximately 36 per cent of the total value of all nongovernmental health-related construction in metropolitan regions. By 1967, that figure had grown to nearly 50 per cent.72 Although legislation enacted in the 1960s redirected federal dollars towards ailing urban hospital systems, the suburbanization of hospitals continued apace in the 1970s and beyond.73 As cities lost their physicians, and insured patients decamped to suburbs, urban hospitals faced a period of retrenchment. Just between 1975 and 1977, 231 urban hospitals closed or relocated nationwide.74 Of those that relocated, many shifted to the suburbs. In the early 1970s, for example, fourteen private hospitals in Chicago announced plans to move to the suburbs.75 Similar attempts to relocate hospitals in Wilmington, Delaware, Gary, Indiana, and other cities triggered lawsuits over the discriminatory impact of hospital ‘flight’. By decade’s end, health care suburbanization had become so conspicuous that some began referring to the 1970s as the era of the ‘runaway hospital’.76 Although privately financed projects constituted the largest share of the postwar hospital construction market, federal programs contributed substantially to the sprawling of American health care.77 In August 1946, members of the US Congress enacted the Hospital Survey and Construction Act, also known as the Hill-Burton Act. As Karen Kruse Thomas discusses in Part IV of this volume, the law’s key provision was its offer of federal subsidies for the construction and modernization of medical facilities.78 Between July 1947 and June 1971, $3.7 billion in federal allocations
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funded nearly 11,000 Hill-Burton projects in 3800 communities. In all, H ill-Burton accounted for nearly one-third of all postwar hospital construction projects in the United States.79 Hailed by many as a success, the Hill-Burton program significantly increased the number of hospital beds in underserved low-income states.80 Yet, as civil rights activists pointed out, Hill-Burton subsidies supported the construction of ‘separate but equal’ medical facilities in states that allowed Jim Crow until a federal court ruling in 1963 and subsequent legislation overturned the practice.81 Hill-Burton also heavily favoured rural over urbanized states. Moreover, within states such as New York and Illinois, Hill-Burton funds disproportionately advantaged suburbs and rural locales over cities, even those with large underserved populations.82 Although federal officials moved to eliminate such disparities in the 1960s, the spatial gulf continued. As late as 1969, in fact, 70 per cent of Hill-Burton allocations supported projects in communities with fewer than 50,000 people.83 By 1973, federal funding had been used to provide approximately 100,000 new inpatient beds in suburbs, many of them in largely white and middle-class areas.84 Evidence from the local level provides striking proof of the inequities of the Hill-Burton program. In postwar Chicago, not one ‘inner-city’ community hospital in an impoverished area received Hill-Burton aid, while two dozen suburban hospitals secured federal support.85 What is more, some hospital systems used Hill-Burton funds to move urban facilities to the suburbs. One such case occurred in 1972, when administrators at Chicago’s St. George Hospital closed their facility in a predominantly Black neighbourhood and reopened it in a nearly all-white suburb.86 Between 1946 and June 1965, as federal officials were disbursing approximately $2.4 billion in Hill-Burton funds, the heavily Black and Latinx communities of Watts in Los Angeles and Harlem and Bedford-Stuyvesant in New York City received a total of just $10,000.87 This was true in spite of the fact that urban areas such as these recorded some of the nation’s highest mortality and morbidity rates.88 Together, federal programs and private investment strategies reshaped the nation’s health care infrastructure during the latter twentieth century. In the aggregate, suburbs and rural areas benefited immensely from this shift, but often at the expense of cities. In a 1980 study of hospital closures in eighteen urban centres, Alan Sager found that eleven had experienced either the shuttering or relocation of at least 30 per cent of their hospitals between 1937 and 1977.89 According to Sager, the racial composition of a hospital’s service area was ‘the most important characteristic’ distinguishing facilities that closed from those that remained open.90 Over time, much the same happened in low-income and majority-minority suburbs – places such as Braddock, Pennsylvania, and East Cleveland, Ohio. Urban and inner-ring suburban hospital closures also hastened the departure of physicians and outpatient clinics during the late twentieth century. For those who relied on these resources, the results were often disastrous. Faced with persistent obstacles to medical treatment, many Americans received little to no primary care and ignored health problems until they warranted a visit to a distant emergency room.91
Conclusion Among the many products of inequality in the postwar metropolis, disparities in health and medical care were some of the most impactful. Inequality led to illness, suffering
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and, in many cases, premature death. Rather than ameliorating these problems, the nation’s medical care system – driven largely by profit-seeking and permeated with exclusion – exacerbated the health divide by denying or rationing treatment to those who most needed it. This was the context in which Martin Luther King Jr., in 1966, lamented, ‘of all the forms of inequality, injustice in health is the most shocking and the most inhuman’.92 King was not alone in his abhorrence of health inequality. To be sure, health- related issues were often at the centre of social justice movements. During the postwar decades, campaigns for healthier neighbourhoods, universal health coverage and hospital desegregation were integral to the civil rights movement. By the 1960s, immigrant farm labourers were demanding better living and working conditions while antipoverty organizers were protesting against urban hospital closures. And in the 1970s, quests for reproductive freedom, insurance reform, an end to rape and domestic violence and improved access to medical care helped to fuel a second wave of feminist activism while expanding definitions and conceptualizations of health. Whether waged by rural Native Americans demanding cleaner air and water, urban African Americans protesting environmental racism or inner-ring suburbanites organizing against the shuttering of health clinics, America’s rich history of activism points to the centrality of health in movements for social justice.93 Such efforts produced significant improvements during the second half of the twentieth century. In 1964, federal lawmakers enacted the Civil Rights Act, which prohibited most forms of discrimination in government hospitals and other publicly funded facilities. The following year, President Lyndon Johnson signed legislation creating Medicare and Medicaid, which extended health coverage to millions of elderly, impoverished and disabled Americans. Together, these reforms broke the colour line in medicine while improving health outcomes within marginalized communities.94 Fair housing reforms in the 1960s and 1970s further bolstered the campaign for health equity by opening up new opportunities for economic and spatial mobility.95 Equally significant were laws banning employment discrimination and the enactment of affirmative action programs, which enabled many women and racial minorities to obtain higher-paying jobs with health benefits.96 In the sphere of environmental health, decades of protests bore fruit in the 1970s and beyond with the formation of the Environmental Protection Agency and new laws mandating cleaner air and water.97 Altogether, these and other reforms helped to mitigate the health disparities that had long tormented disadvantaged communities. Nevertheless, many of the structural underpinnings of health inequality persisted into the late twentieth and early twenty-first centuries. Across the nation, impoverished communities of colour continued to suffer disproportionately from environmental pollution, infectious and chronic diseases, crime and abuses within the criminal justice system.98 Deep social and spatial inequities in the health care marketplace remained in place as well. In 2019, nearly thirty million Americans, over half of whom were racial minorities, were still uninsured.99 Even among the insured, lingering forms of discrimination meant that the country’s most vulnerable consumers, including persons of colour, the disabled and women, received less in return for their health care expenses than white men with privilege. Such imbalances in medical care, along with continued disinvestment in urban and suburban communities of colour, contributed to ongoing health disparities.100 The Covid-19 pandemic,
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which ravaged metropolitan communities of colour throughout 2020 and 2021, cast additional light on the troubling resilience of American health inequality.101 Despite decades of protest, waves of policy reform and concerted efforts at consciousness raising, the battle for metropolitan health equity thus remained unfinished in the early twenty-first century.
Notes 1. Albert Marshall’s death received extensive newspaper coverage. See, for example, Baker E. Morten, ‘Charges Discrimination in Hit-Run Automobile Chase’, Chicago Defender, 8 February 1960. 2. See, for example, ‘NAACP Cites Cases that Ended in Death’, Chicago Defender, 15 December 1960. 3. James N. Gregory, The Southern Diaspora: How the Great Migrations of Black and White Southerners Transformed America (Chapel Hill: University of North Carolina Press, 2005). 4. Robert O. Self, American Babylon: Race and the Struggle for Postwar Oakland (Princeton, NJ: Princeton University Press, 2003). 5. Thomas J. Sugrue, The Origins of the Urban Crisis: Race and Inequality in Postwar Detroit (Princeton, NJ: Princeton University Press, 1996). 6. Kimberlé Crenshaw, On Intersectionality: Essential Writings (New York: New Press, 2016). 7. ‘Study Says Doctors’ Flight from Chicago Creates Crisis’, Chicago Tribune, 26 March 1972. 8. See, for example, Nancy A. Krieger et al., ‘Racism, Sexism, and Social Class: Implications for Studies of Health, Disease, and Well-Being’, American Journal of Preventive Medicine, 9(6) Supplement, November–December 1993, 82–122; Andrew Hurley, Environmental Inequalities: Class, Race, and Industrial Pollution in Gary, Indiana, 1945–1980 (Chapel Hill: University of North Carolina Press, 1995); Alondra Nelson, Body and Soul: The Black Panther Party and the Fight against Medical Discrimination (Minneapolis: University of Minnesota Press, 2011). 9. John D. Morris, ‘Truman Creates Civil Rights Board’, New York Times, 6 December 1946. 10. President’s Committee on Civil Rights, To Secure These Rights: The Report of the President’s Committee on Civil Rights (New York: Simon and Schuster, 1947), 13, 71–4. 11. US Commission on Civil Rights (USCCR), Discrimination against Minorities and Women in Pensions and Health, Life, and Disability Insurance, 2 vols (Washington DC: US Government Printing Office [GPO], 1978); Nancy MacLean, Freedom Is Not Enough: The Opening of the American Workplace (New York and Cambridge, MA: Russell Sage Foundation and Harvard University Press, 2006). 12. Oscar R. Ewing, The Nation’s Health: A Report to the President (Washington DC: GPO, 1948), 63–71. 13. Amasa B. Ford, Urban Health in America (London: Oxford University Press, 1976), 3–34, 120–48. 14. See, for example, Michael Greenberg, ‘American Cities: Good and Bad News about Public Health’, Bulletin of the New York Academy of Medicine, 67(1), January–February 1991, 17–21. 15. Richard Harris and Michael E. Mercier, ‘How Healthy Were the Suburbs?’, Journal of Urban History, 31(6), September 2005, 767–98. 16. Hurley, Environmental Inequalities.
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17. Richard Rothstein, The Color of Law: A Forgotten History of How Our Government Segregated America (New York: Liveright, 2017). 18. Daniel G. Cumming, ‘Black Gold, White Power: Mapping Oil, Real Estate, and Racial Segregation in the Los Angeles Basin, 1900–1939’, Engaging Science, Technology, and Society, 4, March 2018, 85–110. 19. Rob Nixon, Slow Violence and the Environmentalism of the Poor (Cambridge, MA: Harvard University Press, 2011), 2. 20. Gerald Markowitz and David Rosner, Lead Wars: The Politics of Science and the Fate of America’s Children (Berkeley: University of California Press, 2013); Dorceta E. Taylor, Toxic Communities: Environmental Racism, Industrial Pollution, and Residential Mobility (New York: New York University Press, 2014). 21. Yale Rabin, ‘Expulsive Zoning: The Inequitable Legacy of Euclid’, in Zoning and the American Dream: Promises Still to Keep, ed. Charles M. Haar and Jerold S. Kayden (Chicago: Planners Press, 1989), 101–21. 22. Andrew R. Highsmith, ‘Nuisance Clustering: Race, Industrial Zoning, and the Roots of Public Health Inequities in Modern America’, unpublished paper presented at the Eighth Biennial Conference of the Urban History Association, Chicago, 15 October 2016. 23. United Church of Christ, Commission for Racial Justice, Toxic Wastes and Race in the United States: A National Report on the Racial and Socio-Economic Characteristics of Communities with Hazardous Waste Sites (New York: Public Data Access, 1987). 24. Robert D. Bullard, ‘Environmental Justice for All’, in Unequal Protection: Environmental Justice and Communities of Color, ed. Robert D. Bullard (San Francisco: Sierra Club, 1994), 4. 25. Mary P. Harmon and Kathryn Coe, ‘Cancer Mortality in U.S. Counties with Hazardous Waste Sites’, Population and Environment, 14(5), May 1993, 463–80. 26. National Advisory Commission on Civil Disorders (NACCD), Report of the National Advisory Commission on Civil Disorders (New York: Bantam Books, 1968), 272–3; Dawn Day Biehler, Pests in the City: Flies, Bedbugs, Cockroaches, and Rats (Seattle: University of Washington Press, 2013), 111–76. 27. NACCD, Civil Disorders, 39, 49. 28. Mark Anthony Ocegueda, ‘Sol y Sombra: San Bernardino’s Mexican American Community, 1880–1960’, unpublished PhD thesis, University of California, Irvine, 2017, 95–149. 29. NACCD, Civil Disorders, 267; Rhonda Y. Williams, The Politics of Public Housing: Black Women’s Struggles against Urban Inequality (New York: Oxford University Press, 2004), 129, 149; Heather Ann Thompson, ‘Why Mass Incarceration Matters: Rethinking Crisis, Decline, and Transformation in Postwar American History’, Journal of American History, 97(3), December 2010, 703–34. 30. Mindy Thompson Fullilove, Root Shock: How Tearing Up City Neighborhoods Hurts America, and What We Can Do about It (New York: One World/Ballantine Books, 2004), 4. 31. Williams, Public Housing, 147. 32. Merlin Chowkwanyun, ‘Cleveland versus the Clinic: The 1960s Riots and Community Health Reform’, American Journal of Public Health, 108(11), November 2018, 1494–502. 33. Ophelia B. Northcross, interview by George Myers and Ron Amos, 16 April 1998, 46, Kellogg African American Health Care Project Records (KPR), Box 4, Bentley Historical Library, University of Michigan, Ann Arbor; John Gallagher, ‘When Detroit Paved over Paradise’, Detroit Free Press, 15 December 2013. 34. Hurley, Environmental Inequalities, 24. 35. Monica Perales, Smeltertown: Making and Remembering a Southwest Border Community (Chapel Hill: University of North Carolina Press, 2010), 225–9.
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36. Carl A. Zimring, Clean and White: A History of Environmental Racism in the United States (New York: New York University Press, 2015), 192–211. 37. Andrew Needham and Allen Dieterich-Ward, ‘Beyond the Metropolis: Metropolitan Growth and Regional Transformation in Postwar America’, Journal of Urban History, 35(7), November 2009, 943–69. 38. President’s Commission on the Health Needs of the Nation (PCHNN), Building America’s Health: A Report to the President (Washington DC: GPO, 1953), vol. 1, 70; vol. 5, 167–72; ‘Discussion by Oscar Cerda’, in USCCR, Discrimination, vol. 1, 105–7. 39. Andrew Needham, Power Lines: Phoenix and the Making of the Modern Southwest (Princeton, NJ: Princeton University Press, 2014), 3–4, 13–14. 40. PCHNN, Building America’s Health, vol. 1, 64–76; ‘Expectation of Life at Birth, by Race and Sex, 1900–1970’, in US Public Health Service (USPHS), 1900–1967, Vital Statistics of the United States, 1967 (Washington DC: GPO, 1968–70), vol. 2A, 5–8. 41. Paul B. Cornely, ‘Segregation and Discrimination in Medical Care in the United States’, American Journal of Public Health, 46(9), September 1956, 1074–81. 42. Commission on Hospital Care (CHC), Hospital Care in the United States (New York: Commonwealth Fund, 1947), 166; Gladys B. Dillard, interview by George Myers and Ron Amos, 17 September 1998, 16, KPR, Box 3. 43. CHC, Hospital Care, 166; Watson Young, interview by George Myers and Ron Amos, 24 April 1997, 14–15, KPR, Box 2; Rachel B. Keith, interview by George Myers and Ron Amos, 16 July 1998, 9, KPR, Box 4. 44. Charles Wright, interview by George Myers and Ron Amos, 15 April 1997, 36–7, KPR, Box 2. 45. ‘Statement of Max Mont’, in PCHNN, Building America’s Health, vol. 5, 175. 46. ‘Hospital Study’, n.d. [c. 1958], Chicago Urban League Collection (CULC), Series III, Box 220, Folder 385, University of Illinois at Chicago Special Collections and University Archives; CHC, Hospital Care, 166; W. Michael Byrd and Linda A. Clayton, An American Health Dilemma: Race, Medicine, and Health Care in the United States, 1900–2000 (New York: Routledge, 2002), 225. 47. Clarence Mitchell to Harvey V. Higley, 7 August 1953, Papers of the National Association for the Advancement of Colored People, Part 9: Discrimination in the US Armed Forces, 1918–55, Series A: General Office Files on Armed Forces’ Affairs, 1918–55, Film E5, Reel 6. 48. Samuel U. Rodgers, ‘Kansas City General Hospital No. 2: A Historical Summary’, Journal of the National Medical Association, 54(5), September 1962, 525–44. 49. ‘Final Report of Racial Factors in Bed Utilization and Patient Care in the Detroit Area General Hospitals’, 4 April 1956, 13–17, Detroit Commission on Community Relations/ Human Rights Department Records, Part 3, Box 84, Folder 31, Walter P. Reuther Library, Archives of Labor and Urban Affairs, Wayne State University, Detroit; Wright interview, 40. 50. ‘Statement of Henry Von Avery’, in PCHNN, Building America’s Health, vol. 5, 172–4; ‘Final Report of Racial Factors’, 13–17. 51. Young interview, 15, 27. 52. Chicago Urban League (CUL), ‘Memorandum on Discrimination in Chicago Hospitals’, n.d. [c. 1956], 1, CULC, Series III, Box 14, Folder 177. 53. Ibid. 2. 54. ‘Statement of Henry Von Avery’, 172–4. 55. Harriet A. Washington, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present (New York: Doubleday, 2006). 56. Della Goodwin, interview by George Myers and Ron Amos, 20 August 1998, 30, KPR, Box 3.
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57. ‘Statement of Max Mont’, 176. 58. National Industrial Conference Board (NICB), Compulsory Sickness Compensation for New York State (New York: NICB, 1947), 111. 59. Herbert S. Denenberg, Discrimination in the Insurance Marketplace and in the Insurance Business (Washington DC: USCCR, 1978), 33; American Academy of Actuaries, ‘Report on Academy Task Force on Risk Classification’, in USCCR, Discrimination, vol. 1, 577–602. 60. James R. Young, ‘Consumer Problems with Industrial Life Insurance’, Journal of Consumer Affairs, 10(2), December 1976, 255–60. 61. Vanessa Northington Gamble, Making a Place for Ourselves: The Black Hospital Movement, 1920–1945 (New York: Oxford University Press, 1995), 182–96. 62. ‘Facing the Challenge: Report to the Board of Trustees of Lincoln Hospital’, 24 February 1960, 1–10, Rencher Nicholas Harris Papers, Box 9, Folder 1, David M. Rubenstein Rare Book and Manuscript Library, Duke University, Durham, NC. 63. ‘Foes of Hospital Bias Open Parlay Tomorrow’, Chicago Defender, 22 May 1958. 64. CUL, ‘Memorandum’, 2. 65. Committee on Hospital and Clinic Facilities for the Medically Indigent, ‘Location of a South Side Branch of Cook County Hospital: Findings and Conclusions’, February 1957, 4–6, Hyde Park-Kenwood Community Conference Records, Box 173, Folder 4, Special Collections Research Center, University of Chicago. 66. Luther L. Terry, ‘The City in National Health’, Public Health Reports, 77(5), 1 May 1962, 377–82. 67. Rosemary Stevens, In Sickness and in Wealth: American Hospitals in the Twentieth Century (New York: Basic Books, 1989), 39, 230. 68. Alfred E. Miller, Maria G. Miller and Jonathan Adelman, ‘The Changing Urban–Suburban Distribution of Medical Practice in Large American Metropolitan Areas’, Medical Care, 16(10), October 1978, 804. 69. Pierre de Vise et al., Slum Medicine: Chicago’s Apartheid Health System (Chicago: Community and Family Study Center, University of Chicago, 1969), 17–25; Pierre de Vise, Misused and Misplaced Hospitals and Doctors: A Locational Analysis of the Urban Health Care Crisis (Washington DC: Association of American Geographers, 1973), 14. 70. Christine B. Hickman, ‘The Failure of the Runaway Hospital’, Health Law Project Library Bulletin, 1, 1978, 1–7. 71. Parker G. Marden, ‘Demographic and Ecological Analysis of the Distribution of Physicians in Metropolitan America, 1960’, American Journal of Sociology, 72(3), November 1966, 290–300; Dorothy K. Newman, ‘The Decentralization of Jobs: Job Opportunities Multiply in the Suburbs, Out of Reach of the City-Center Poor’, Monthly Labor Review, 90(5), May 1967, 8. 72. Mary F. Carney, ‘Suburban and Central City Building in Metropolitan Areas, 1957’, Construction Review, 4, January 1958, 15; Dorothy K. Newman, ‘Building in Metropolitan Areas, 1954–56’, Monthly Labor Review, 80(6), June 1957, 689–96; Newman, ‘Decentralization of Jobs’, 8. 73. Guian A. McKee, ‘The Hospital City in an Ethnic Enclave: Tufts–New England Medical Center, Boston’s Chinatown, and the Urban Political Economy of Health Care’, Journal of Urban History, 42(2), March 2016, 263; Thomas M. Stanback Jr., ‘Regionalization of Professional Services: Private Sector Analogue’, in Regionalization and Health Policy, ed. Eli Ginzburg (Washington DC: GPO, 1977), 11. 74. Alan Sager, ‘Urban Hospital Closings in the Face of Racial Change’, Health Law Project Library Bulletin, 5(6), June 1980, 169–81. 75. ‘Hospitals Moving to Suburbs’, Chicago Tribune, 28 April 1970. 76. Hickman, ‘Runaway Hospital’, 1–7.
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77. US Department of Commerce, Construction Statistics, 1915–1964: A Supplement to Construction Review (Washington DC: GPO, 1966), 2–11. 78. Joseph Mantone, ‘The Big Bang: The Hill-Burton Act Put Hospitals in Thousands of Communities and Launched Today’s Continuing Healthcare Building Boom’, Modern Healthcare, 35(33), August 2005, 6–16. 79. USPHS, Hill-Burton Program: Progress Report, July 1, 1947–June 30, 1971 (Washington DC: GPO, 1972), 9; Lawrence J. Clark et al., ‘The Impact of Hill-Burton: An Analysis of Hospital Bed and Physician Distribution in the United States, 1950–1970’, Medical Care, 18(5), May 1980, 532. 80. Mantone, ‘Big Bang’. 81. David Barton Smith, Health Care Divided: Race and Healing a Nation (Ann Arbor: University of Michigan Press, 1999), 64–142. 82. Leslie Morgan Abbe and Anna Mae Baney, The Nation’s Health Facilities: Ten Years of the Hill-Burton Hospital and Medical Facilities Program, 1946–1956 (Washington DC: USPHS, 1958), 20–2; Clark et al., ‘Hill-Burton’, 534, 538; Paul Starr, The Social Transformation of American Medicine (New York: Basic Books, 1982), 348–51. 83. J. D. Thewlis, ‘Metropolitan Hospital Planning’, Public Health Reports, 75, February 1960, 142; USPHS, Hill-Burton Program Progress Report, July 1, 1947–June 30, 1965 (Washington DC: GPO, 1966), 28; Arnold H. Diamond, ‘Emerging Fiscal Patterns in Metropolitan Areas’, Proceedings of the Annual Conference on Taxation under the Auspices of the National Tax Association, 1966, 13; Jacquelyn Hochban et al., ‘The Hill-Burton Program and Changes in Health Services Delivery’, Inquiry, 18(1), Spring 1981, 61–9. 84. Subcommittee on Health of the Committee on Labor and Public Welfare United States Senate, Hill-Burton Hospital Survey and Construction Act: History of the Program and Current Problems and Issues (Washington DC: GPO, 1973), 13. 85. De Vise, Misused and Misplaced, 76; President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Securing Access to Health Care: The Ethical Implications of Differences in the Availability of Health Services (Washington DC: GPO, 1983), vol. 3, 262, 272. 86. Robert McClory, ‘Hospitals Flee to Suburbs’, Chicago Defender, 25 November 1974. 87. Diamond, ‘Fiscal Patterns’, 13; USPHS, Hill-Burton Project Register, July 1, 1947–June 30, 1969 (Washington DC: GPO, 1969). 88. De Vise et al., Slum Medicine; Karl E. Hammonds, ‘Blacks and the Urban Health Crisis’, Journal of the National Medical Association, 66(3), May 1974, 226–7. 89. Sager, ‘Urban Hospital Closings’. 90. Alan Sager, ‘The Reconfiguration of Urban Hospital Care: 1937–1980’, in Cities and Sickness: Health Care in Urban America, ed. Ann Lennarson Greer and Scott Greer (Beverly Hills, CA: Sage Publications, 1983), 82. 91. Ronald Kotulak, ‘Private Doctor Is Hard to Find’, Chicago Tribune, 25 June 1973; Andrew B. Bindman, Dennis Keane and Nicole Lurie, ‘A Public Hospital Closes’, Journal of the American Medical Association, 264(22), 12 December 1990, 2899–904; Reed Abelson, ‘Taps for a Community Hospital’, New York Times, 6 June 2011. 92. Beatrix Hoffman, Health Care for Some: Rights and Rationing in the United States since 1930 (Chicago: University of Chicago Press, 2012); Charlene Galarneau, ‘Getting King’s Words Right’, Journal of Health Care for the Poor and Underserved, 29(1), February 2018, 5–8. 93. Bullard, ed., Unequal Protection; Laura Pulido, Environmentalism and Economic Justice: Two Chicano Struggles in the Southwest (Tucson: University of Arizona Press, 1996); Nelson, Body and Soul; Jennifer Nelson, More Than Medicine: A History of the Feminist Women’s Health Movement (New York: New York University Press, 2015);
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Dina Gilio-Whitaker, As Long as Grass Grows: The Indigenous Fight for Environmental Justice, from Colonization to Standing Rock (Boston: Beacon Press, 2019). 94. David Barton Smith, The Power to Heal: Civil Rights, Medicare, and the Struggle to Transform America’s Health Care System (Nashville, TN: Vanderbilt University Press, 2016). 95. Gregory D. Squires, ed., The Fight for Fair Housing: Causes, Consequences, and Future Implications of the 1968 Federal Fair Housing Act (New York: Routledge, 2018). 96. MacLean, Freedom Is Not Enough. 97. Ryan B. Holifield, Jayajit Chakraborty and Gordon P. Walker, eds, The Routledge Handbook of Environmental Justice (London: Routledge, 2018). 98. James N. Weinstein et al., eds, Communities in Action: Pathways to Health Equity (Washington DC: National Academies Press, 2017). 99. Katherine Keisler-Starkey and Lisa N. Bunch, ‘Health Insurance Coverage in the United States: 2019’, September 2020: https://www.census.gov/content/dam/Census/library/pub lications/2020/demo/p60-271.pdf (accessed 20 January 2021). 100. Deborah A. Stone, ‘The Struggle for the Soul of Health Insurance’, Journal of Health Politics, Policy and Law, 18(2), April 1993, 287–317; Karen Scott Collins et al., Diverse Communities, Common Concerns: Assessing Health Care Quality for Minority Americans: Findings from the Commonwealth Fund 2001 Health Care Quality Survey (New York: Commonwealth Fund, 2002); Dennis Andrulis and Lisa Duchon, ‘The Changing Landscape of Hospital Capacity in Large Cities and Suburbs: Implications for the Safety Net in Metropolitan America’, Journal of Urban Health, 84, June 2007, 400–14. 101. Gina Kolata, ‘Social Inequities Explain Racial Gaps in Pandemic, Studies Find’, New York Times, 9 December 2020.
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2 Poverty, Health and Health Care in Rural Communities Jessica D. Ulrich-Schad, Cynthia M. Duncan and Kristen Koci
H
ealth and health care are integrally connected to the economic circumstances of individuals and communities in the United States. This connection between economic well-being and health is especially visible in rural areas. Poor rural people tend to be less healthy, more likely to engage in perceived unhealthy behaviour, and have more limited access to health care than more prosperous rural residents.1 The Covid-19 pandemic made this connection between economic well-being and health starkly clear, as vulnerable and disadvantaged people were much more likely to fall gravely ill with the virus and access to care was more limited in poor places.2 Economic restructuring has dramatically changed the availability and quality of work and the economic circumstances in rural places in the US over the last forty years, particularly in poorer rural areas.3 The jobs residents have are increasingly in the service sector, of which the low-skilled are often low-paying, contingent and without essential benefits such as health insurance.4 Furthermore, many rural places were still in recovery from the Great Recession of 2008 when the novel coronavirus pandemic hit in early 2020, putting additional strain on rural health care systems and economies.5 Population loss has also made it challenging for some rural places to maintain their health care infrastructure, leaving often ageing and poor rural residents without local access to essential health care services.6 In this chapter, we provide a sociological perspective on the health of residents of rural counties in the US, as well as demographic and economic changes that affect health and access to health care. Then, focusing on the 1990s to the present, we combine secondary data with our own surveys and interviews in order to compare physical and mental health and health care provision in chronically poor rural areas with those in somewhat more prosperous rural places. Our conclusions show how consistently poor rural places fare worse on health, healthy behaviour and access to health care.
Demographic and Economic Trends Affecting Rural Health and Health Care Geographic isolation and lack of population density have long created challenges for basic health care services in the rural United States. People in rural places are more likely to feel access to good doctors and hospitals is a major problem in their community and they face longer travel times to the nearest hospital than suburban
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jessica d. ulrich-schad, cynthia m. duncan, kristen koci
and urban residents.7 While there is variation between different types of rural places, overall the rural population has steadily declined since its peak in the 1940s due to natural decrease (more deaths than births), outmigration and absorption into metropolitan areas.8 Fewer rural residents means that the expensive infrastructure used in the modern medical care system is hard to support.9 Population loss also means many rural places are ageing, in part from younger working age residents leaving for opportunities in urban areas.10 Elderly long-term residents tend to be poorer and in worse health than older newcomers, but an ageing population strains health care institutions in both cases.11 While not as diverse as urban and suburban areas, racial and ethnic diversity in rural regions is also on the rise, but most minority groups living in rural areas report poorer health and more limited health care access than non-Hispanic rural whites.12 Economic changes in rural communities also affect health and access to care. The processes of industrial restructuring that began in the 1980s fundamentally reshaped the type of jobs in rural places.13 Jobs in agriculture, mining and manufacturing have been replaced by those in low-skilled services that pay less, are seasonal, or are parttime; when such service jobs replaced goods-producing jobs, workers often lost access to health care and health insurance. These trends have continued into the twenty-first century, with the Great Recession of 2008 hitting rural communities particularly hard, and many areas have yet to fully recover from substantial job losses.14 And the economic fallout from the Covid-19 pandemic of 2020–22 has also been profound in rural areas, many of which depend on recreational visitors. According to a 2017 report by the Agency for Healthcare Research and Quality, residents of rural counties in the US are in poorer health than their urban counterparts.15 Rural residents are more likely to engage in ‘unhealthy behaviour’, including smoking and lack of physical activity. Life expectancy is also lower. While individual health insurance coverage has gone up in the US since the passage of the Patient Protection and Affordable Care Act (ACA) in 2010, those in the most rural counties are the least likely to have coverage.16 The prevalence of mental health issues in rural and urban places is comparable, yet accessibility, availability and acceptability of services are limited and vary across rural places.17 ‘Deaths of despair’, or deaths involving drugs, alcohol and suicides, are higher in rural areas than in urban areas, while suicide rates in rural areas have been rising since the 1970s, particularly among men.18 Both the population decline and the economic challenges facing some rural communities have affected rural health care systems, exacerbating the long-time problems inherent in geographic isolation and lack of population density. The viability of rural hospitals, in particular, has been threatened by financial losses exacerbated by demographic trends.19 Since 2005, there have been 172 rural hospital closures nationwide, with the closure rate rising in recent years.20 Most vulnerable are those rural hospitals offering fewer services, with higher rates of patients on Medicaid and located in the South.21 This is especially troubling given that many rural residents identify a clinic, hospital or emergency room as their primary source of health care. Rural hospital closures not only directly reduce access to local health care and services provided by hospitals, they also mean a rise in medical costs, specifically emergency medical costs, increased time to travel to health services, transportation issues to receive remote care and loss of jobs for hospital staff.22 Furthermore, these rural hospital closures disproportionately affect non-whites (particularly Black communities), women and the poor.
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Three Types of Rural Places in the United States Rural communities are diverse, but there are prevalent patterns. The Economic Research Service at the US Department of Agriculture uses various typologies such as recreation and retirement counties or manufacturing and farming counties to distinguish counties by economic and policy types. In recent years, researchers at the Carsey School of Public Policy based at the University of New Hampshire identified three generic types of rural places: amenity rich, transitioning and chronically poor.23 Using both secondary sources and our own survey and interview data, we have shown how economic, demographic and social trends converge, but also clearly vary across these different types of rural places. While a three-category typology does not fully capture all of the complexity and diversity within the national span of rural localities and communities, we find it a useful tool for understanding broad trends in rural places. Amenity rich rural places have abundant natural amenities that make them desirable for recreationists and retirees to live, visit and own second homes. These places attract newcomers, often college-educated professionals who are able to work remotely and even start a business, while enjoying the quality of life that such an environment can offer. Unlike transitioning and chronically poor rural places, these places experience little outmigration. Households tend to have high median incomes and educational attainment, while fewer experience poverty conditions. Despite this relative prosperity, amenity rich places have also seen well-paying blue-collar jobs disappear, and expanded service economies often mean seasonal employment that is low paying and without benefits. Housing affordability is a challenge for low-wage workers as economic inequality increases and serves to drive up housing costs.24 Clashes between new and long-term residents can emerge over desired forms of development and community identity.25 Transitioning rural places are those experiencing significant declines or shifts in their economic engines. Many have seen working-class jobs disappear and Main Street businesses shutter. Culture and the economy are linked in rural places, and people we interviewed lamented the loss of ‘heritage’ as the old economy disappeared. Some transitioning places with potentially desirable natural amenities are shifting to tourismor recreation-based economies, preventing some population loss, while those without such advantages are struggling to maintain key community institutions as their populations decline. Stories of young people, and thus future families with children who are the lifeblood of a strong community, leaving for opportunities and amenities elsewhere abound in these places, many of them located in heartland regions.26 Chronically poor rural places have persistently high poverty and low human capital. While some people stay, either because poverty and basic education give them little choice or because they want to remain near family, generally these places have seen high outmigration given the lack of job opportunities. As Cynthia Duncan documents in her 2014 book Worlds Apart: Poverty and Politics in Rural America, poor families have been neglected by politicians and exploited by local elites, there is only a small middle class, and community institutions do not have the human and material resources necessary to support efforts to escape poverty. Chronically poor places are mostly in Appalachia, the Ozarks and in the rural South. Similar socioeconomic conditions present challenges for Native American reservations, in the Colonias and in some areas in the Southwest.
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Methods and Field Work In this chapter we draw upon a variety of primary and secondary data sources, both qualitative and quantitative, to show how health and access to health care in rural communities differ from urban areas, and also how health and health care vary across different types of rural places. In doing so, we present four short case studies that span the regions of New England, Appalachia, the Deep South and the Rocky Mountain West, but we withhold the names of our communities and the individuals within them to protect the identity of those we describe on more in-depth levels in other publications. Along with demographic and economic data drawn primarily from the 2018 American Community Survey, we use health and health care information to help document how patterns vary between the three types of rural places and the communities outlined above. While using the original data sources would have been preferable (for example, the National Center for Health Statistics’ Behavioral Risk Factor Surveillance System), we draw upon more accessible data from the 2020 County Health Rankings because it adequately provides information on basic trends. We surveyed nearly 17,000 residents of rural places in the US as part of the Community and Environment in Rural America (CERA) project from 2007 to 2011. Researchers at the Carsey School of Public Policy (including the first and second authors) conducted these surveys to gather information about how rural US residents perceive and experience local social and civic, economic and environmental conditions. We purposefully selected 38 counties spanning 12 states to represent some of the geographic, economic and demographic diversity across the US. These included amenity rich (13 counties, 6 states, N=4893), transitioning (16 counties, 7 states, N=7028) and chronically poor (10 counties, 4 states, N=4896) counties. Those who participated in the phone survey were randomly selected at the county level and within households. Response rates ranged between 18 and 40 per cent and probability weights (age, race, sex) are applied in all analyses.27 The interview data used in the following case studies derive from two separate but related studies conducted in 2013 and 2014 by the first and second authors to better understand the quality of life and nature of the social structure in the communities. While health was not the primary focus of these 2013–14 studies, in each place health issues emerged as important concerns. Interviews typically lasted one to two hours and were recorded with permission. Interviewees were asked to share their life story with us, and to reflect on their life and community. We subsequently analysed the interview transcripts for themes and patterns. We conducted our interviews in counties where we also collected CERA survey data. We interviewed residents and community leaders in one transitioning place, Gray Mountain (N=35), and in two chronically poor places, Blackwell and Dahlia (N=85), to update the case studies presented in Worlds Apart. We worked with a longtime colleague from a historically Black college to conduct the interviews in Dahlia, a majority Black area in the Mississippi Delta. Jessica Ulrich-Schad conducted 59 interviews in one high amenity place (River Town). Other chronically poor areas, such as Native American reservations and areas where many Hispanic US residents live, are important in capturing a fuller perspective of rural places. We conducted focus groups with tribal leaders in one western state and found similarities to other chronically poor areas, as well as deep commitment to tribal tradition and stewardship of natural
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resources. Our Native partners prefer that we not share this data. We do not have our own qualitative data on the Colonias and Borderland areas, but others have identified similar socioeconomic conditions and challenges.28
Demographic and Economic Patterns in Three Rural Place Types Table 2.1 provides more detail on the demographic and economic patterns described previously in the three rural place types and demonstrates a consistent pattern of relative prosperity in amenity rich places, a middle ground in transitioning places, Table 2.1 Socioeconomic and demographic indicators for CERA study counties and US 2018, percentage of residents (except median household income) Amenity Rich Transitioning Chronically Poor
US
Demographics and Education Population Change, 1990–2018 Population Change, Ages 25–34, 1990–2018 65+ Non-Hispanic White No High School Degree (25+) Associates Degree and Above (ages 25+)
20.7 3.2
11.2 −17.3
−17.1 −32.5
29.8 −2.5
22.0 70.6 8.6 37.0
21.6 83.1 8.7 32.5
18.4 66.0 20.3 24.2
15.2 60.3 12.3 39.9
Work and Disability Adults 16–64 Working (full-time, year-round) Families with No Workers (past 12 months) Working Age (18–64) by Disability Status Working Age (18–64) Men by Disability Status Disconnected Youth (range of age 16–24 not in school or working)
43.6
44.2
36.8
50.0
21.5
21.0
29.8
14.7
15.2
15.2
21.6
10.2
16.3
16.0
23.0
10.5
7.8–28.2
14.2–37.1
15.5–36.4
11.5
52,339
55,031
32,187
61,937
17.7 41.1
21.3 41.6
38.2 42.8
19.5 31.6
5.3
6.8
12.3
5.3
15.0 8.3 7–30
15.0 9.8 14–31
27.1 16.5 26–76
11.3 12.6 23
Income and Poverty Median Household Income (in dollars) Children (0–17) in Poverty Households Receiving Social Security Households Receiving Supplemental Security Income Households Receiving SNAP Single Female Family Households Teen Birth Rate (range of rates per 1000 females age 15–19)
Sources: 1990 US Census data; 2018 American Community Survey 5 year Estimates; National Center for Health Statistics – Natality files 2012–18.
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and all the social problems associated with poverty in chronically poor places. As we will show, health follows these same patterns. Amenity rich counties have grown the most since the 1990s, followed by transitioning counties, while chronically poor counties have lost population. Both transitioning and chronically poor places lost younger working age adults (ages 25 to 34), while amenity rich places saw only slight growth. With many young adults leaving, and older residents staying or moving in, populations of all three types of study counties have a larger elderly population than the national average.29 While rural places are increasingly racially diverse overall, the percentage of non-Hispanic white individuals is higher than the national average in all three types of study counties. Education levels vary between rural place types and the nation as a whole. Most notably, chronically poor counties have the highest rate of those with no high school degree and the lowest rate of those with at least an associate’s degree. Fewer adults are working full-time, year-round in our rural study counties than nationally. This is especially true for chronically poor counties where about a third are employed. Families in all three rural place types are more likely than the nation as a whole to have no workers in the past twelve months, with nearly 30 per cent of families in chronically poor rural counties with none in 2018. Disabilities, as well as the lack of accessibility in workplaces, that prevent people from working are higher in all three place types than in the US more broadly. However, in chronically poor places, disability rates are higher for all working age adults and for men specifically. The percentage of ‘disconnected youth’, or those between the ages of 16 and 24 not in school or working, is also generally higher in rural places than in the country as a whole. The range we observed in amenity rich counties is lower than in transitioning and chronically poor counties. The median household income for each rural place type is lower than the national average, but it varies between them. In the US in 2018, nearly one in five children lived in poverty. While the percentage is similar in amenity rich and transitioning places, the poverty rate is nearly double for children in chronically poor places. Households receiving social security, supplemental security income and Supplemental Nutrition Assistance Program (SNAP) are highest in chronically poor counties and substantially higher than the national average for each. Households in the amenity rich and transitioning counties are similar in their percentage of households receiving these benefits, though they are also higher than the national average. We found that perceptions of economic and health-related issues in the different places correspond to the patterns of demographic and economic conditions described above. Table 2.2 shows data from the CERA survey documenting some commonalities and differences between the three rural place types on economic and health-related issues. Fully 85 per cent of residents in all three place types see the lack of job opportunities as a challenge. Poverty or homelessness was perceived by the highest percentage (54%) in chronically poor rural areas to be an important problem facing their community, followed by 47 per cent in transitioning areas and 43 per cent in amenity rich areas. Differences were significant between all place types. A lack of health and social services was seen by about half of residents in chronically poor places as a problem, significantly higher than the other two place types where about a third saw it as a problem. There were also significant differences in how residents of the three place types perceived recreational and outdoor opportunities. Residents of chronically poor rural areas were most likely to see the lack of
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Table 2.2 Findings from CERA survey by county type, percentage of respondents Economic Job opportunities an important problem for community Poverty or homelessness an important problem for community Health-Related Lack of health and social services a problem for community Lack of recreational opportunities a problem for community Very important to stay in community for outdoors/ other recreation opportunities Manufacturing/sale of illegal drugs an important problem in community
Amenity Rich
Transitioning
Chronically Poor
Sig.?
85.3
85.8
84.5
42.7
46.7
53.5
a, b, c
38.1
35.5
51.7
b, c
14.8
24.1
42.5
a, b, c
51.3
49.9
40.3
a, b, c
60.4
60.5
79.3
b, c
Notes: Not all questions were asked in all iterations of the survey; significant differences by county type (p