The Biomedical Empire: Lessons Learned from the COVID-19 Pandemic 9781503629882

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T H E

B I O M E D I C A L

E M P I R E

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T H E

B I O M E D I C A L

E M P I R E Lessons Learned from the COVID-19 Pandemic

B A R B A R A

K A T Z

R O T H M A N

stanford briefs An Imprint of Stanford University Press Stanford, California

Stanford University Press Stanford, California ©2021 by Barbara Katz Rothman. All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying and recording, or in any information storage or retrieval system without the prior written permission of Stanford University Press. Printed in the United States of America on acid-free, archival-quality paper Library of Congress Cataloging-in-Publication Data Names: Rothman, Barbara Katz, author. Title: The biomedical empire : lessons learned from the COVID-19 pandemic / Barbara Katz Rothman. Description: Stanford, California : Stanford Briefs, an imprint of Stanford University Press, 2021. | Includes bibliographical references. | Identifiers: LCCN 2021016205 (print) | LCCN 2021016206 (ebook) | ISBN 9781503628816 (paperback) | ISBN 9781503629882 (ebook) Subjects: LCSH: Medical care—Political aspects. | Social medicine. | COVID-19 Pandemic, 2020—Political aspects. | COVID-19 Pandemic, 2020—Social aspects. Classification: LCC RA418 .R685 2021 (print) | LCC RA418 ebook) | DDC 614.5/92414—dc23 LC record available at https://lccn.loc.gov/2021016205 LC ebook record available at https://lccn.loc.gov/2021016206 Cover design: David Drummond Cover image: Kirill Kodochigov, Sashkin/Shutterstock Typeset by Classic Typography in 11/15 Adobe Garamond

CONTENTS

Acknowledgments   vii  1   A

Moment of Crisis   1

 2   A

Sociologist Walks into a Pandemic . . .   14

 3   Bringing

Medical Sociology into the 21st Century   23

 4   The

Three Elements of an Empire   33

 5   What

Have We Lost? Where Did the Care Go?   52

 6   The

Land of the Sick   69

 7   Death

and Dying as Seen Through the Lens of COVID-19   83

 8   The

Other Gate: Birth in the Time of COVID-19   97

 9   The

Empire Strikes Back   108

10   Lessons

Learned   120

Notes    141

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ACKNOWLEDGMENTS

I stand on the shoulders of giants: The thinking of Peter Conrad, Irving Kenneth Zola, and Ivan Illich run through this book. And I lean on the arms of colleagues: Eileen Moran who has critically read everything I have ever published, and Mary Cunnane who has held me up at rough moments in this process. The underlying concept of biomedical imperialism grew out of conversations with Alan Petersen. The critical and helpful responses to my earlier drafts have been invaluable, and I thank Finn Bowring, Wendy Simonds, Keisha Goode, Kyla BenderBaird, Kristin Wilson, Judith Lasker, and the anonymous reviewer. My appreciation to the support of Marcela Cristina Maxfield of Stanford University Press. Maren Lockwood Carden read and responded to every draft, over and over. Holliday Tyson turned a quarantine into a writer’s retreat and in this as in everything supports me in my life and my work. Books take organizing, really

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shocking amounts of time and attention: For not leaving me alone with all of that, I thank Rati Kashyap, Christie Sillo, Leah Colb Rothman, and Ken Ingram.

T H E

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E M P I R E

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1  A MOMENT OF CRISIS

You may be an American, a Brit, a Canadian, a German, an Indian, a South African—but we are all citizens of the Biomedical Empire. Your country may issue your citizenship papers, but they will ask for your birth certificate to do so. Trans people talk about needing a medical approval of their sex identity—but we all get our sex identity assigned on our birth certificates based on a medical evaluation. Your access to the goods and services of your nation-state depend on your biocitizenship.1 Biomedicine is the ruling empire, colonizing the planet. For a long time, along with many of my colleagues in medical sociology, I have been talking about the “Medical Industrial Complex”2—that riff off of Eisenhower’s naming of the military industrial complex. Like the military, biomedicine is tightly and powerfully tied to industrial capitalism, and the consequences are visible everywhere. But of late I have gone beyond that powerful but ­limited understanding of the role of biomedicine in 1

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contemporary society, and started talking about the Biomedical Empire.3 A basic definition of empire is “the expansion of economic activities . . . beyond national boundaries as well as the social, political and economic effects of this expansion.”4 Those effects include not just the economic, but faith and legal backing as well. Biomedicine, as I will be showing, has these key elements. Empires are economic powers, and biomedicine is one of the largest economic forces in the world. There is an element of quasi-religious belief in all imperial power— think of all the times you’ve heard people say they “believe in” this or that element of medicine. And there is the rule of law—your citizenship depends on a medically authorized birth certificate, and you won’t leave this earth without a medically authorized death certificate. In between, over and over again, you will find yourself awaiting a “doctor’s note” for everything from skipping a day of school to accepting a Fulbright appointment. What is and is not a medical practice or medical condition has the authority of law. The COVID-19 pandemic has made the place of biomedicine as an imperial power in the world more obvious and—not unrelated—brought forward its largest and most visible resistance. This has been happening to some extent throughout the world, but is—maybe not surprisingly—happening more loudly, strongly, and wildly in the (dis)United States. Along came this new disease for which medicine had no cure. And yet people turned to medicine. It’s not just

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that we were asking medicine to develop a cure or a vaccine, but right then, this person with the condition, right this minute—call your doctor! Some of that is about symptom management. You get sick, that means various bodily functions aren’t working normally, and those are symptoms. Some of them can be treated: You’re not getting enough oxygen from normal breathing, so medicine can give you oxygen. Actually medicine seems to have the lock on doing that. My grandmother had an oxygen tank in her apartment when I was a kid, and when the pandemic started, I wondered why we weren’t distributing those now for people with COVID-19 breathing problems. But no, anyone with breathing problems must go to the hospital, while we simultaneously bemoan how overcrowded and overwhelmed hospitals are—and how the gathering of people with COVID-19 increases the spread of COVID-19. Hospitals became hot spots. As they always have been, of course, places where diseases are transmitted, in what were named nosocomial infections, the word created for infections specifically picked up in hospitals. Why would you go there if you didn’t absolutely have to? One of the things that the COVID-19 pandemic has done is make people reconsider hospitals. Pre-pandemic, we could visit our elderly grandmother in the hospital if she went in for tests or treatment. But now we’re not allowed to visit, and she’d be isolated to prevent the spread of disease in the hot spots hospitals are known to be. So more people have started thinking about managing

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illnesses at home. And if our grandmother were actually dying, why lock her up for that? At the other end of life, the concern many of us have been raising for years about home and birth centers as better places to give birth than hospitals began to make sense to more and more people. How to handle both birth and death became subjects of considerable debate, and—as I will show later—highlighted long-standing problems with medical management of the gates of life. The Biomedical Empire was in a period of enormous vulnerability. The immediate response was a push to slow down the spread of the virus, “flatten the curve,” so that biomedical management could catch up. The hospitals were overwhelmed; the drama of the exhausted medical workers, and the patients laid out in overcrowded hallways or literally piled up as bodies in refrigerated trucks outside of hospitals, was put on display everywhere one turned. Slow it down, flatten the curve. It was informative to watch the conflict over opening up the economy and flattening the curve. People who violated stay-at-home demands were not showing their allegiance to the Biomedical Empire. They did a lot of flag waving, claiming it as an American right to exercise their economic and bodily choice. It felt as if American governmental power was being placed in conflict with biomedical authority. Different leaders emerged to represent each force, and ordinary collaboration between government and biomedicine was made public precisely because of the aberration of the dispute. In the US,

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Anthony Fauci perhaps most clearly represented the biomedical imperial power and Trump the American governmental power. Face masks quickly became a kind of tribal flag, signifying membership in the Biomedical Empire. The surgical mask design seemed to add some cachet, those bands around the ears made them seem more medical. If our only choices are allegiance to one or the other of these empires, I’m signing on with biomedicine. But can we acknowledge that as the pandemic spread, we didn’t have a lot to put our faith into? The Biomedical Empire did not know how to fix this pandemic. Maybe there would be some totally risk-free, 100% effective vaccine researched and developed in a totally ethical way. Or some perfect treatment that cures the disease. Could happen. Until then, we were in the midst of a clash of struggling empires. And, as I have always told my students in difficult, challenging, threatening times: Take notes! Yes, because putting one’s intellect to work on the problem is a good coping strategy. But more importantly, these rough moments are rough precisely because the chasms between world views are laid bare. This is when sociology can step up to the plate and help us figure out what is happening—and understand better what has been happening all along. As the Biomedical Empire faced its greatest challenge, it became easier to see how that empire has served and how it has failed its people.

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An analysis and critique of the Biomedical Empire is not a call to bring back smallpox or polio, or to deny that biomedical imperialism is responsible for ending those epidemics. But imperialism is not static, and biomedical imperialism has changed substantively and substantially with its corporatization. We think of medical progress as moments of individual scientific breakthroughs: the discovery of penicillin, the invention of a vaccine. An apocryphal story has Salk claiming credit for the invention of the polio vaccine but saying that patenting it would be like “patenting the sun.”5 In today’s Biomedical Empire, individual scientists are not situated so as to even have a voice in the distribution, let alone patenting, of their findings: The university or lab one works for would be the owner of record, and patenting would be inevitable. At a meeting I attended at the United Nations on the issue of patenting the human genome, a seemingly thoughtful, caring young man representing the industry rose up and spoke eloquently on the absolute necessity of patenting the genome, or else, he told us, “There will be no incentive to cure cancer.” Presumably a room full of people could think of other reasons we might want to cure cancer, incentives other than the profit motive. But he was correct in the essence of what he was saying, which was less about incentive and more about mechanism: The Biomedical Empire has left us with no mechanisms other than profit to do something presumably all human beings want done. If curing cancer will be enormously profitable, there will be work done to make that happen. If

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not, like the “orphan” diseases of the world that are too rare to be profitable, the work will not be done. Sparing people grief, pain, early death—these are not workable incentives in biomedical imperialism. Profit is. This is the world in which we live, in which biomedical imperialism is a dominant force and we are all its citizens. THE GOOD MEDICINE DOES

There isn’t anybody with whom I’ve shared the idea for this book who hasn’t felt it important to remind me how medicine saved them or someone they loved. “Yes, but.” That it’s an evil empire running in its own interests is more easily acknowledged by Americans who pay individually for insurance and/or for medical services, and more often denied by people whose governments share the project of paying, but the argument is always: Yes, it’s an empire working in its own interest. But. It saved my life. Yes indeed, medicine—the drugs, the procedures, the people, the Empire—does save lives. Consider the defining story of my own life: the death of my father when I was a child. That shaped me in every possible way, including intellectually. Including this very book. The faith element of medicine was stripped from me when I was eight. I can remember my mother sitting me on her lap (pretty rare by that point) in the big wing chair in the living room and explaining to me that people do not always get well. I learned that people who go into

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the hospital do not always come home. So when I was having my first baby back in the 1970s, I just didn’t want to go into the hospital. It was a good feminist moment, and I had good feminist arguments, which got me my first widely published article in then-new Ms. Magazine.6 And feminism is probably why I felt more comfortable talking a woman OB into attending me than a man, and why a woman OB who had worked with the Jane Collective doing illegal abortions felt more comfortable with the it’s-my-body argument I offered. But this wasn’t just about feminist principles for me. At some deep level, I wasn’t sure that, if I went into the hospital, the baby and I would come home again. And then the experience I did have, of a home birth with a doctor who’d never seen one, engaged my sociology of knowledge intellectual side and began my career as a medical sociologist. My father died of testicular cancer, undiagnosed until after the fact. He had one undescended testicle, which made him a wee bit proud and relieved that he could get my mother pregnant. Later medical research showed that testicles are meant to be cooler than body temperature, which is why they hang there vulnerably like they do. If one is kept tucked inside, cancers can develop. So when my son was born, I didn’t care about counting fingers and toes, I checked for two balls. When I felt two, I breathed the biggest sigh of relief. Whew, we could go ahead and name him after my father. If he hadn’t had them both dangling where they belonged, no question

A MOMENT OF CRISIS

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we would have gone off to have that second one brought down where it goes, thanks to modern medicine. Yes. Medicine—the profession, the body of knowledge, the pills—can save lives and regularly does. The Romans built great roads, but that doesn’t mean they weren’t an empire. Lots of empires do lots of good things. That doesn’t make them not empires. It also doesn’t mean everything they do is good. So relax. I am not trying to kill you with an untreated infection because antibiotics are overused in the interests of big profits. I am not trying to take away your pacemaker or (god forbid!) my own contact lenses. Yes, medicine saves and improves lives and does many wonderful things. But. We can better understand what it does and why—how it works in and against our interests as patients/consumers, for good and for evil, prioritizing profit, in the interests of corporate accountability—if we think about it as the empire, the imperial power, I am arguing it is. L E A R N I N G F R O M T H E M O M E N T: G LO BA L I Z AT I O N A N D I M P E R I A L I S M

Global capitalism has changed the world, and certainly it has been seen as an imperial power. Why focus on biomedicine as a particular power? Capitalism cannot expand without the constant recreation of needs, what Illich called the “modernization of poverty,”7 and focusing on health, vitality, and longevity are probably the most irresistible of needs.8

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COVID-19 was named a pandemic because of the speed with which it spread around the world. An “outbreak” is a disease occurring at higher than usual rates, or a new disease altogether occurring in a particular location. When a disease is spreading rapidly it is called an “epidemic,” and when it spreads throughout the world, it’s a “pandemic.” Think about that. It tells you something about the disease, but it also tells you something about the world. If a brand new disease-causing germ develops on some little island inhabited by a small number of people and they all get it, every one of them, if they stay on that island and no one else comes to that island, the disease isn’t going anywhere. They’ll die or recover, but it will happen in place. That’s not the world we are living in. We are in a world filled with global connections. Think about a big city’s international airport as it was before the pandemic: Stand at the baggage claim area for your London flight, and the Tokyo flight folks were on one side of you and the New Zealand on the other. College students went off for yearlong study abroad programs; people selling products made in one country came to sales meetings in another. Look around the room you are sitting in as you read this. How many of the objects, from the food you’re snacking on to your shoes and the carpet they’re sitting on, made a journey from other places? The word globalization is often used to refer to business or economics, as the selling of objects or services goes beyond borders and becomes truly international. But it’s more than that. You’re listening to music from one part of

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the world playing on machines developed in another while eating food cooked with recipes from yet another. The cultural and social spread is as profound as the objects. We don’t always stop to think about it. A pandemic is a moment of globalization, a moment in which we confront that taken-for-granted worldwide movement. Countries closed their borders to stop the spread of COVID-19, to prevent its entry into their country. In the United States we were asked to think about state borders—quarantine if coming from this state, but not that one. There have, of course, been pandemics before: bubonic plague, smallpox, AIDS, various influenzas that have spread around the world. The spread can be faster as more people move more quickly around the world. But the argument I’m making in this book is that the response is itself affected by globalization. Each government, each ruler, responded to the early pandemics. But as biomedicine itself has become a global power, the response is global. This pandemic, this moment, and the medical responses permit us to see the tensions between the larger imperial power that biomedicine has become and the local nation-states. In this book I will be laying out what the Biomedical Empire is, how biomedicine has become an imperial power and what some of the key consequences have been. While some of the focus will be on the American situation, the argument that biomedicine has become an imperial power is inherently transnational—imperial powers go beyond the power of any nation-state. Some argue that the privatization of medical services in the

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United States is why we experience biomedical imperialism as a power. My argument is that this empire has conquered all nation-states, including those that pay collectively. But the blatant price tags that mark the American experience do, to some extent, explain what Hausman calls “the enduring grip of medical skepticism” in the US.9 The moment of this pandemic also shows us the profound limitations of this empire in its management of the gates of life. There are problems that people in the worlds of death and birth care have been fighting for decades. Birth is treated as one more medical procedure; death as an awkward medical failure. Medical management has not done well by either: Social movements have been fighting for better care, and as COVID-19 locked down the hospitals and exposed the nursing homes, those issues became increasingly clear to all. In the chapters on the gates of life, I will focus on those specific issues but also show how they are indicative of the limitations of biomedical imperialism in taking care of people as people, not just embodied work-objects in factory-like hospitals, or as Timothy Snyder has put it, “In the hospital, sad to say, a body is a widget.”10 And in those factories, workers are workers, under management control, profoundly limited in their ability to do the caretaking and caregiving that might have drawn them into medicine and nursing in the first place. All the key issues of our time, the race and class and gender issues that we confront, are laid bare by the

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ubiquitous nature of biomedical imperial power. We talk of frontline workers as heroes, but that implies a kind of horizontal power in a very vertical world. That “front” is the bottom, disproportionately poorer, nonwhite, and economically vulnerable. Patients, too, are stratified: By medicalizing gender and gender identity, by creating risk groups out of race, biomedical imperialism works with the existing divides in societies. The pandemic is allowing us to see how biomedical imperialism has colonized so much of life. But that empire is fighting back, fighting not just the pandemic, but fighting for its own continuing rule. Whether we are talking about masks or vaccines or new treatments, the critique of biomedical imperialism is coming from discordant voices and from different directions. We are at a difficult moment, and as I said, such moments can be intellectually productive. They can be politically productive, too. They can move us toward true social change and make the world a better place. One ongoing concern is how to wrest the critique of biomedicine from right wing populism. How can we accept and work with the good that medicine does, while fighting the forces that push its expansion far beyond its good? These issues might be easier to see in the (dis)United States where class, race, and private forces are in open conflict. But they are part of the larger empire and larger forces. Let’s use this moment to learn. And hopefully to make things better.

2  A SOCIOLOGIST WALKS INTO A PA N D E M I C . . .

It’s very hard for Americans to think sociologically—it’s a very individualistic culture. A cartoon I have on my office wall at my undergraduate campus shows a fishbowl with a big fish explaining to a small fish, “You can grow up to be anything you want to be.” My undergraduate students are completely convinced that if they study hard, work hard, it’s all possible for them. While most American Blacks are forced to see the structure, lots of White Americans think it’s all about the individual. When I’ve taught in the UK and in European countries, I’ve been struck by how clear the class system is to all of those students—in the US, we’re all “middle class,” and it’s pretty much an insult to imply anything else. So thinking sociologically, seeing not just each individual tree but the forest, is countercultural in the US. Trees and forests are a useful way to explain this—the one thing you can say for sure about a tree is that it’s not going anywhere. It might live or die, but it’s not moving 14

A SOCIOLOGIST WALKS INTO A PANDEMIC . . .

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down the road. Forests move. The boundaries of a forest change over time. That means trees at one end are growing and those at the other end are dying. To understand the life chances of a tree, you need to know where it is in the path of the forest. And so it is with people. Thinking sociologically lets one see not just the patient and the providers—the dutiful signing on for screenings, the pink ribbons, the caring doctor almost crying, having to tell someone their pancreatic cancer gives them just a few months left to live, the mother of the heart donor hugging the heart recipient—but to see the system which creates all of those scenes. It’s this sociological imagination, seeing the larger picture, that I bring to this discussion of biomedicine as having become an empire across the world. So it will be useful to define some basic sociological concepts that I will be drawing on throughout this book. M E D I C A L I Z AT I O N

Let us begin with medicalization: The concept of medicalization has a long and rich history in sociology and is one of the bits of sociological jargon that has made it into mainstream English.1 The term refers to the way more and more of life has been turned into “medical issues,” and more of our conditions, events, and experiences turned over to medical management. This has been called “disease mongering,”2 that endless list of bodily states and emotions, conditions and preconditions, that goes

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on and on. Ultimately you have “surveillance medicine”;3 no one can be truly healthy, everyone has risk factors that require medical surveillance. That kid who couldn’t sit still for ten minutes in my second grade class, the one the teacher used to send on errands—he’d now be diagnosed as “hyperactive” and on meds. That’s a classic example of what Americans understand as medicalization. But whisking a woman who just gave birth unexpectedly in a shopping mall off to a hospital in an ambulance, admitting her baby into a neo­ natal unit for observation—that is also an example of medicalization. When medicalization is successful, we no longer see it— the medicalized thing is seen as naturally medical. Of course you call on medical help, you need a doctor for that. In recent years, sociologists have addressed the ways that medicalization has changed with changing times, looking at “biomedicalization,”4 which considers the way that our neoliberal focus on individual choices, on the purchase of things and services, changes and expands our ideas of what is medical. More and more of what was understood as individual variation is labeled as problematic, fixable with medical intervention. The stigma of certain conditions shifts to the personal failure to adhere to appropriate medical regimes to alleviate or at least minimize the consequences of those conditions. Consider that annoying kid: When he still couldn’t sit still even after all those errands, he’d be punished. Now his medically defined condition would spare him direct

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punishment. He’s got this condition, it’s not his fault. But his parents will be held accountable if they do not get him medical services and have the kid take his medication regularly. And as he moves into adulthood, he will not be held responsible for being “hyperactive,” but will be blamed if he doesn’t follow his medically prescribed treatment for that hyperactivity. We worry and are held responsible not only for the conditions we or our children have, but also those for which we are at increased risk. This is what we mean by a “risk society.”5,6 In our modern world we are made aware of not only what is wrong, but what could go wrong. A stroke, for example, is a pretty terrible thing to have happen to you—it might kill or disable you. You will absolutely be expected to put yourself under medical management and care and follow medical guidelines for recovery. But, if you are “at risk” for a stroke, you are similarly held accountable for managing that risk and will be blamed if you fail to do so. Before you are sick, without being sick, you are being held accountable for managing your body, and those of your children, as good patients, good citizens of the Biomedical Empire. In some sense, of course, we are all at risk: Strokes can happen to anyone. Some characteristics though, like high blood pressure, high cholesterol levels, and smoking are linked to a higher risk for a stroke, and if you have those, you are expected to be aware and actively managing. A smoker who has a stroke, let alone lung cancer, will be blamed for it. Someone with high cholesterol levels will be held

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accountable for their diet. Someone with high blood pressure is expected to be on the right drugs. Those risks become part of our ordinary daily life. And the risk lists get longer and longer, the levels of “high” get lower and lower, with more and more people “at risk” for more and more diseases and conditions. You may not yet have high blood pressure, but the level defined as high drops regularly and more people find themselves so diagnosed. And for some conditions, a level of something not high enough to yet be indicative of the disease becomes a “pre-disease” condition. A high blood sugar level defines diabetic—but more people are being defined as “pre-diabetics,” their ­levels high but not high enough to meet the diagnostic criteria. This seemingly endless expansion of risk rates is the nature of a risk society. Infectious diseases, such as COVID-19, present an interesting variable: It may be that some of us are at higher risk of becoming infected. There have been discussions of variations by blood type, by vitamin D deficiency, and by age. But the real concern about risk with these conditions is not getting the disease but the severity and recovery. Children can get sick with COVID-19; some can die. But old people are far more likely to become very sick and to die if they contract the disease. The risk factors we hear the most about are not for contracting COVID19, but for severity and mortality. Those at higher risk are expected to take special precautions to avoid exposure, but those at low risk are asked to protect those at higher risk: Young and healthy people are told to wear a mask

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not for their own protection but for those around them, those for whom the disease may well prove fatal. While medicalization as a concept helped us to think about how much of individual variation is now understood as diagnosable and treatable, biomedicalization focuses on all of the choices we make, the risks we face, and how we deal with them, both individually as consumers and collectively as a society. Thus more and more of life is medicalized—life’s problems, joys, events, accomplishments, failures, hopes, and dreams are understood as primarily medical in nature. Body, mind, mood, sexuality, intellectual focus, sociability—whatever the concern, there is a diagnosis, a treatment, a pill for that. I am going beyond the social construction of illness,7 and beyond “medical imperialism”8 and “diagnostic imperialism”9 to an analysis and recognition of the contemporary global world. And so biomedicine has become an imperial power in its own right, colonizing more and more spheres of life and working almost as a global religion, as well as one of the most productive economic industries on the planet. We must go beyond a sociology of or in medicine, and look at the process and power in biomedical imperialism itself. F R O M T H E PA S S I V E V O I C E T O T H E A C T I V E

My own work is always categorized as medical sociology, even though so much of it is anti-medical, arguing against the medicalization of life and normal bodily

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experiences. From my dissertation work looking at the home birth movement and revival of American midwifery, on through my career, whether it is pregnancy and birth, disability and the meaning of a normal body, or death itself, I often find myself exploring how medicalization has made life worse, more difficult, and more dangerous.10 It’s not a popular approach out there in the social world. But a defensive stance is normal for sociologists, as we routinely point out the assumptions in taken-for-granted reality, use our “debunking motif” to understand the world. Much of what I do has thus been, from the social constructionist perspective, an analysis of medicalization: How did X get to be constructed as a disease or condition, with medical expertise required for its understanding and management? People who just hear the words social construction are often dismissive—oh sure, ADHD might be socially constructed, but cancer is real. Of course cancer is real. But it too is socially constructed, made into cancer as we know it, given its meaning and implications by social forces. Cancer—and for now, let us just take breast cancer for an example—went from being unspoken, hushed, the Big C, a whispered death sentence, to a pink extravaganza, a challenge we can rise to meet, a basis for routine screening, enormous pride, and solidarity in survivorship—all without much noticeable change in the death rate.11 To have breast cancer in 1960 and to have breast cancer in 2010 was not the same thing at all. The disease did not change in those 50 years, but its social construction sure did.

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Death itself, I explain each semester, as real and physical as it is, as much as a dead body eventually becomes a piece of rotting meat, still needs to be constructed as a social state. That moment of death is only understood as death if the body stays dead. The seven-year-old with a seizure who recovers did not die, while the 93-year-old who fell down on the street did, even if at that exact moment—say 7:34 on a Tuesday morning—the physical condition of both were equally “dead,” hearts not beating, breath not being drawn. The social construction of X—be it a fetus or high blood pressure, diabetes or death itself—how X is identified, defined, what its meaning is, and how it is to be managed, are all products of the medicalization of X. And with changing technologies and procedures, that definition changes: Once organ transplants were possible, the definition of death itself had to be reconfigured, to acknowledge brain death while other parts of the body were in some ways still living. When I write that it is time to go beyond social constructionism, in no way am I rejecting or diminishing the importance of that idea: Illness is socially constructed. Wendy Simonds, in Hospital Land USA, looks at definitions of expanding medicalization, and in conversation as her book developed, I realized that what bothered me was that the basic concept of medicalization rests on “an assumption that there are ‘medical’ and ‘nonmedical’ problems in the first place, as if there were a sphere of rightly, righteously medical problems.”12 I blurted that in front of Simonds who captured it and put it in the book.

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Then, reading my own words in print, I realized how much that idea needs to be expanded. We have moved beyond simple medicalization and the social construction of medicine as social processes—they are the active constructions of the Biomedical Empire, which is one of the greatest powers on earth.

3  BRINGING MEDICAL SOCIOLOGY INTO THE 21ST CENTURY

Biomedicine is not only a profession, a discipline, a set of industries, or even a cluster of professions, disciplines, and industries; biomedicine now functions globally much the way we have always understood imperial powers to function. In our world of advanced capitalism, doctors are no longer gods, but employees of larger systems. Power has moved to management. Professors have seen the same thing happen in universities.1 Sometimes the shift of power works in the interests of the consumers, be they patients or students or customers. And sometimes the shift to managerial control benefits the workers, even professional workers. When the professionals deem themselves too important to be bothered with certain tasks and delegate them to others beneath them, that is one thing. But when management does it, it is “scope creep” and experienced very differently. It is no longer medicine as a profession, but biomedicine as an industry that exerts 23

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power and controls its distribution. And it will always be done in a way that benefits the industry, the system, the Empire. Medical sociologists must now understand biomedicine as itself the power. That power is being exercised not simply over other disciplines or other parts of the world but as an imperial power in its own right, exercised across the globe, over nation-states including those of the West in which it developed, as well as over what might have been competing disciplines. Biomedical imperialism2 is one of the strongest forces on earth today. In essence I am making two bold claims: that Marx was right, that the state has become essentially the committee for managing the affairs of the bourgeoisie; and that ultimately Foucault was wrong, that the state does not use biopower so much as biopower uses the state. Foucault introduced the concept of biopower to describe the practice of modern nation-states and their regulation of their subjects through “an explosion of numerous and diverse techniques for achieving the subjugations of bodies and the control of populations.”3 As much as that does explain a lot about how states have worked, it is time to recognize that basically Marx was right—states and their governments function largely to manage the affairs of industry.4 We can talk, as Foucault did, about governmentality, how neoliberalism brings us an internalized control, managing life, bare life.5 I am arguing that we need to look directly at biomedical imperialism: how a set of beliefs, the religion of biomedicine, working with governments and

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laws, created a climate hospitable to its industrial, economic goals. Rather than thinking of governmentality, neoliberalism, internalized healthism, normalization, self-esteem, and responsibilization as if they were the product of neoliberal governments, we need to see that they are all part of the expansion of an international, border-crossing Bio­ medical Empire—something more powerful than a global industry—extending beyond each neoliberal government. As an industry biomedicine certainly succeeds in different places—walk into a medical setting anywhere in the world, and so much of the ritual is more than familiar, branded internationally. It works with religious symbols of varied sorts and systems, and adapts itself to local culture. Ours is no longer simply a world of separate nations, but a globalized economy with some of the structures and relationships we used to think of as national now operating on the global level. And so it is with the Foucauldian notion of biopower. The states do not stand alone, but as Marx had anticipated, are managerial systems for the owners of the means of production. But those owners are transnational, with industries that are truly global, offering services outside of national citizenship or control. Biomedicine is operating at a level and in a way in which national boundaries are but minor obstacles in organizing access—access of providers of services to their customers or to research material, and access of customers to services. Canada chooses not to make bariatric surgery

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a routine part of its national medical insurance services and does not permit private medical practices to open up at whim. Businesses that want to provide those services set up in Mexico, make themselves known to Canadians, and clients/patients/customers are met at the airport, escorted through customs in a van along a special “medical” fast lane, and delivered to the bariatric surgery center. Or, less in the free choice, free trade model and more in the manner of historical imperialism: Biomedical researchers need bodies on which to experiment. In a well-known classic example, Puerto Rican women were used to develop birth control pills which were then marketed around the world. There is a whole world of medical tourism, people unheeding of national boundaries accessing the services offered by the Biomedical Empire. Bariatric surgery, dental implants, hired pregnancies, organs for transplant, from trivial to life and death, people who have enough money can access any and all of the services offered, and people poor enough can be used to provide those services. This isn’t unique among industries. Take, for example, the world of food. Someone somewhere is poor enough to be willing to do whatever needs to be done to grow and produce the food; someone somewhere is rich enough to eat it, whether we are talking about Froot Loops and Big Macs, or truffle oil and pâté de foie gras. What is happening in all of industrialization is happening in biomedical industries too—humans are not much needed as workers; they are very much needed as customers. I remember when I was a child being really

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confused and annoyed with my mother when she said she’d had a very “productive” day and described the shopping she’d done. I understand it better now. We have, at the level of the family, and at the level of the planet, moved from a focus on people as workers to people as consumers, from a world of production to one of consumption. At this point, many governments around the world are seriously considering, and some offering, a guaranteed income, because while robots can take on production, citizens are needed as consumers. MEDICINE AND BIOMEDICINE

And what are we consuming? Medicine? People use the word medicine to mean so many different things that sometimes it’s hard to speak or to write clearly about it. Medicine means the thing, the substance or pill or liquid that we use to cure an illness: medicine as an object. Medicine also means the art, the science, the whole project of treating disease or maintaining health: medicine as a practice. And sometimes medicine means the profession itself, the relatively small group in the biomedical industry, the medical profession, which has claimed definitive expertise: medicine as a power. Within medicine the profession, biomedicine is generally used to refer to a particular approach, the use of the biological sciences, particularly biochemistry, molecular biology, and genetics applied to the understanding, treatment, and management of disease, thus taking on the power of science itself. The

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discussion of biosciences-based medicine tends to make ordinary citizens of the Biomedical Empire shake their heads in wonder: What else would medicine be based on if not bioscience and evidence? Biomedicine, as sociologists now use the term, goes beyond the professional limits of medicine itself and looks at the full array of biomedical practice and work, perhaps coming closest to the notion of biomedicine as an industry. That is why I use the perhaps awkward word biomedical here—biomedicine refers to the sciences and the clinical work, a fuller range than the power claimed by medicine. This incorporates not only the particular work that medicine as a profession chooses not to include—dentistry being the clearest example—but the expanding territories of biomedical authority, such as food and nutrition, education, and sexuality. Biomedicine can be understood in the fullest sense: an industry, a set of problems and solutions, and a way of thinking and being in the world that addresses the basic issue of humans as embodied beings. Offering a critique of the ways biomedicine is functioning as an imperial power makes it sound a lot like throwing out the baby with the bathwater, disregarding and devaluing the good that is there. That is not what I am claiming, arguing, or even addressing. Lots of imperial states have done good along with whatever evils they have done. Some of that good was in fact tied up with biopower, public health measures brought in by Western imperialists—industrialists or missionaries—

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that have sometimes helped people in poorer corners of the world. And some of that good is tied up with other values and beliefs of Western countries: The different versions of racism and sexism that are brought by the conquerors can upend some of the evil that exists among the conquered. Ending sati, the Hindu practice of widows being burned to death on their husbands’ funeral pyres, something Marx appreciated as a “modernizing power” of capitalism, can be rated as an accomplishment of British imperialism. One can acknowledge that without validating imperialism or claiming that was the only or best way to end the practice. Medicine as a profession—long before it was an industry, long before capitalist expansion—began as a colonizer, taking work from people it disvalued, ignoring their knowledge, and declaring the field as their own. The disvalued were women in much of the world. Women were traditionally, in many cultures, the healers, the caregivers, the repositories of knowledge about illness, its care and its management, and yes, its cure. There were also what we in America were taught to call medicine men, people disvalued because of their caste status, Indigenous, Black, “primitive” people. University-educated elite White men declared all of those other bodies of knowledge to be primitive and their own knowledge to be valued. As long as there have been humans, there has been some kind of medicine, some body of knowledge and set of skills, to treat the sick. There is evidence of dental

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work and of amputations dating back thousands of years. Uses of plants for healing don’t leave the kind of record bone and tooth work does, but it’s hard to imagine that people did not notice that this plant eased pain, this one helped sleep, this one eased a fever, this one eased anxiety, and shared that information with others. But medicine as a field of study can only date back as far as we have the idea of separate places for study, the beginnings of the university. We think of Hippocrates as the father of modern medicine, and he lived until somewhere around 370 BCE. But medical schools as we now understand the term date back to around the 9th century. The Renaissance brought more intellectual interest and value to study, translating Greek and Arabic work into Latin. This is what the educated studied: the scientific, medical knowledge that had been gathered into writing. The next major shift is what Foucault named “The Birth of the Clinic,”6 based on his reading all of clinical medicine between 1790 and 1820. This was the era of the growth of something we would now recognize as the medical teaching hospital. With that, we get the beginnings of the new medicine, based on observing sickness, illness, impairment, and the human body in distress, not in a personal relational way, but as a moment of knowledge production. What can we learn from this pain? How can one see this body—see into, see through, see past the individual person—and into the workings of the

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body in illness? The authority of the physician moved from being the reader of organized prior knowledge to being the reader of the body. In some ways, this idea of medical knowledge without clinical experience reminds me of discussions that are happening now, as medicine in the last few decades has moved to what it calls evidence based. When I try to explain that in classes, my students are, understandably, a bit perplexed. What on earth would medicine ever have been based on if not evidence? But in truth, if you learn medicine not in practice but from handed-down information, the source of the knowledge is your trust in your forebearers. If the people who created that information were wrong, and you studied and mastered it, your work in learning is impressive, but not particularly useful in healing. The move to the clinic, the move to observation, is in some ways a move back to what the people who had no Latin and no university education did: learn from doing. Something worked, let’s try it again. My child broke his leg, we tried this, he’s walking again. Your child just broke her leg? Let’s try what worked on mine. And let’s remember that for next time. With its colonization of healers and its devaluation of their knowledge and skills, medicine made it literally illegal to use knowledge, however evidence-based, or to use skills, however well developed, without its approval. Doing that is practicing medicine without a license, and can get you jail time. That is what I mean by speaking of

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biomedicine as having governmentality, the rule of law under its control, and that is an important part of what makes an empire. In the next chapter, I will lay out the key components of an empire, its rule of law, its emphasis on belief and faith, and its enormous economic power. That biomedicine is functioning as one of the largest industries on the planet is self-evident. To claim that biomedicine functions as an empire requires understanding two other essential aspects of biomedicine today: that it also functions as a religion and that it functions as a colonizing form of government, a “land.” Let’s start by looking at the unimaginable size of the global industry that is biomedicine.

4  THE THREE ELEMENTS OF AN EMPIRE

Biomedicine is an industry, vast and influential throughout the world, but it is far more than an industry. If we want to understand the social construction and colonizing that is created under its banner, we must also understand medicine as a religious force and as a governmental force. We must understand the sense of righteousness, the legitimacy, the idea of bringing science and modernity to the world that empire presents. But even if we think just of the expansion of economic activities, biomedicine as itself an economic sphere, the size and scope is almost beyond imagining, and that is where we start. BIOMEDICINE AS AN ECONOMIC POWER

By most measures, biomedicine is one of the largest industries on the planet. But most measures do not begin to capture the totality of the Empire. One looks at the pharmaceutical industry—beyond large, enormous, huge 33

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even. But while that is a good piece of the Biomedical Empire, it is far from all of it. Pick up a magazine, one on home decorating, for example, and you will find as many or even more pages advertising biomedicine than décor. Ride down a highway to see sign after sign for local hospitals, diet clinics, gyms, plastic surgery, and lawyers who can sue for malpractice if those services go awry. Look at the buildings on the strip malls you pass: How many are housing biomedical services? In the United States, hospitals and biotech properties, medical centers, and medical office buildings are major players in the world of real estate.1 Try watching an hour of television without being told to “ask your doctor.” How much of the world’s advertising budget is coming from and serving the Biomedical Empire? In the US, which, like only New Zealand, permits direct-to-consumer advertising for prescription medications, the spending on medical marketing went from $17.7 billion in 1997 up to $29.9 billion in 2016.2 In other countries money is still spent on marketing of course, but for prescription drugs, that marketing is aimed more specifically at the prescribers. Nonprescription medicine is also advertised. If you are continually getting messages about pills to take, pills sold in sealed white containers to look very medical, or pills in all green eco-friendly packing with herbal gardens on it, you are still being messaged that your body needs medication, and the costs of all of it—the pills or capsules, the packaging, the distribution, the advertising—are part of that biomedical industry.

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Then look at our educational institutions: How many of our classes are serving that industry? It’s been called a medical-education-industrial complex, an industry composed of not only the educational organizations themselves, but the licensing and accrediting agencies, the certifying boards, the conferences, and more.3 And those are only the programs directed specifically at people who are going into biomedical professions and occupations. There are also those going into fields that are serving biomedicine, including administration, advertising, law, real estate, and architecture. And the pharmaceutical sales force? They have to go to college too to get those jobs, all of which serve the Biomedical Empire. The United Nations has an International Standard for Industrial Classification (ISIC)4 and divides the health care industry into (1) specifically hospital activities; (2) medical and dental practice activities, and then (3) general “other” human health activities. That last one includes the work nurses and physiotherapists do, the work of midwives, work done in laboratories, and the work of allied health professions, ranging from optometry to speech or music or occupational therapy, homeopathy, chiropractic services, or acupuncture. Other approaches adopt a broader definition, including education and training of those workers and the regulation of their work, and some include the area of medical insurance as well. Whatever part of it you are measuring, there is no question that it is a lot of money. A recent article from the World Health Organization (WHO)5 showed rising

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global spending on health, measured in US dollars, at $7.8 trillion in 2017, up from $7.6 trillion in 2016, and concludes that in the years 2000 to 2017, overall health spending increased “dramatically”6 in a group of 42 countries that experienced economic growth. They also found that the health sector was growing at a faster rate than the economy, at 3.9% compared to the overall economy growth of 3.0%. And if you do want to look just at the pharmaceutical industry, about a decade ago an article in the Sociology of Health and Illness called it one of the most profitable industries in the world, enjoying profits of 25% through the 1990s, and stated that by 2011, worldwide pharmaceutical sales were over $700 billion USD a year, with the global drug bill increasing thirty-fold between 1972 and 2005.7 Along with this growth comes a kind of standardization, a globalization of what we think of as the “western regulatory system.”8 And the pharmaceutical industry has other costs that are not usually considered. Some suggest it is one of the biggest contributors to the climate problems and is more emissions-intensive than the automotive industry.9 The United States is fairly well known now for spending the most money with the worst outcomes.10 The Commonwealth Fund reported in 2020 that The U.S. spends more on health care as a share of the economy—nearly twice as much as the average OECD country—yet has the lowest life expectancy and highest suicide rates among the 11 nations.11

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And more specifically, it states that as much as one-quarter of total health care spending in the U.S.—between $760 billion and $935 billion annually—is wasteful. Overtreatment or low-value care—medications, tests, treatments, and procedures that provide no or minimal benefit or potential harm—accounts for approximately one-tenth of this spending.12

While that is obviously a lot of money wasted, they are saying that three quarters of the spending is not wasteful, is appropriate, and so, presumably, what the rest of the world is or should be spending. Other sources, such as the Journal of the American Medical Association take those same numbers and say it accounts for 25% of all health care spending.13 One could, of course, devote hundreds of pages to analyzing this data. How big the industry is and how one could measure it are not easy questions. Suffice it to say for our purposes that it is indeed beyond enormous. Biomedical spending is integrated into so much of the world economy. It’s not a random sample (truly not a serious research project, though it would indeed make an important study or a good thesis paper), but look at the medical and biomedical ads and articles in one nonhealth-focused magazine: the October 2020 issue of ­Better Homes and Gardens.14 It’s a decorating magazine. The cover has “eye-popping pumpkins” to paint, and the inside cover offers a two-page ad on “the biology of beauty, bolder not older,” for “Hair Biology” products. And the ads go on from there: two pages on skincare, four on

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menstrual products, one each for Nyquil and ZzzQuil, a half-page for an over-the-counter cough medicine, and a page for an allergy medication. And then there are the prescription drug ads, longer because they are required to list the “fine print” of the risks and side effects. There are ads for cancer and chemo, eczema, prescribed weight loss medications, dry eyes, rheumatoid arthritis, a COPD symptom relief medication, and two (pre-COVID) vaccines. That’s about 26 pages of a 148-page magazine on prescription drugs, another 3.5 pages on OTC medications, and 8 pages on hair, skin, and menstrual care. I am not counting straight-out cosmetic ads that do not mention health or biology. And besides the advertising, there’s an article on four reasons you should get a medical second opinion; another page on “your guide to a healthy life,” including lowering your blood pressure, updating your immunizations, and lotions to use with masks; and a one on foods that can lower your cancer risk. This is a magazine about homes and gardens. A magazine aimed at people with enough money to have a home and to consider decorating it. There were a few other ads for pet products, cell phone data, food, and even a few on home-improvement products in the home-improvement magazine. Magazines keep themselves going mostly on advertising space. Consumer purchase and subscriptions help, but they do not keep print magazines published. But if the biomedical industry collapsed, so would this magazine. Finally, run this little thought experiment: What if something innocuous and inane like (I am totally mak-

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ing this up!) eating a half a banana peel a day meant that people lived healthily into their 80s or beyond and died peacefully in their sleep one night? No more cancer, heart disease, diabetes, Alzheimer’s, all of it just gone. Schizophrenia and clinical depression gone. In my imaginary world, healthy people would live healthily until they die of old age. No more primary care visits, no routine screenings, no early-stage, pre-condition management. Maybe you could keep selling cosmetic procedures. You’d still have an occasional broken leg, a car accident, and other needs for biomedical services. But just imagine the financial crisis around the world if we just cured sickness, flat out ended disease. It would make this COVID-19–related economic crash look like a little bump in the road. B I O M E D I C I N E A S A G OV E R N M E N TA L POWER

Much of my thinking about what biomedicine has become is inspired by the Presidential Address David A. Smith gave to the Society for the Study of Social Problems in 2016. Society, he told us, is not the right unit of analysis. We are living in a global world.15 In a sense, we have been in a global economy at least as far back as the 1600s, back to slavery, the destruction of the cotton production in India, and other such early activities. Global exploitation is not new. Wallerstein has made us think hard about this,16 and Smith acknowledges and appreciates that. But

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Smith helped me to understand that globalization has superseded the state as the appropriate unit of analysis. Let’s apply this to medical sociology. We know the US is an outlier, alone in the developed world in not having some guarantee of medical services for all of its people and in privatizing all of it. But discussing the systems of distribution within any given country or comparing them between countries is not the same as addressing a global production system. Biomedicine is not just a global industry—it is a global power. When we think about global power, we have to think about global capitalism. On that, as Smith also said, “Marx was right.” Marx did identify the “elephant in the room”—capitalism— although, he himself couldn’t have imagined the sort of global capitalism we have today. But the profit-making logic that defines our twenty-first century corporate- and financedominated economy (which is now thoroughly global) is the deep underlying factor in the contemporary world beset by pervasive inequality, violence, and ecological calamity.17

Global capitalism, wielding its political and economic power, is no longer the local bourgeoisie that an oversimplified view of Marxism presents, people owning a factory that the local proletariat work in, but increasingly a “disconnected plutocracy comprised of the top 1 percent (which more accurately is really the .1 percent, .01 percent, or even some smaller fraction).”18

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It was much the same point that Göran Therborn made a year or so later in a Plenary Address to the Finnish Sociological Society.19 The rich have gotten richer, so much richer that our ideas about stratification seem quaint. Therborn asked for a paradigm shift, from thinking about stratification to thinking about inequality. Stratification—the language sociologists have used to talk about class and income—is a word that comes from geology and is a way of thinking that naturalizes difference. And, importantly, that doesn’t focus on the horrors of what happens at the bottom. That’s not a problem for rocks. Our language of stratification oddly does, especially in the United States, focus on an ability to move, something rocks cannot do, to rise up in the system. This was the Parsonian idea of functionalism,20 an equal opportunity liberalism. If that ever existed, it obviously was only there for some segments of the population. Race, gender, and disability locked people in as firmly as geological stratification can. But even if there was, at least for some, movement or the hope of “upward mobility,” it is very different in our world now, our 21st-century glob­ alized world with the wealth sucked to the top. Therborn talked about urban segregation increasing. We have global cities now, not a rich neighborhood in every town, but places where the very rich own property they use when they want to—and leave when the going gets rough, as we saw with COVID-19 and the emptying of parts of New York and other global cities. That top 1% pretty much flew off the map. Income inequality has

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increased not just in the already problematic United States, but throughout what we thought of as the more egalitarian first-world countries. Therborn pointed out that even in Sweden the pay for CEOs went from 9 times that of workers in 1980 to 92 times in 2017. And again, even in a country that does take care of its people, this has consequences: Even in Sweden, working-class babies are overrepresented among babies who are underweight, and life expectancy is linked to social class. The sorting by class and status is no longer as simple as White men on top, everyone else beneath. Educational sorting is more important—and we have certainly seen in the United States how that system can be gamed, how wealthy people can be sure that their children will be the best educated, or get the most prestigious diplomas, and so “achieve” the place in the stratification system to which they were “ascribed,” using here the classic sociological distinction between those positions we come to by our own behavior and those assigned to us. David Smith encouraged us to look at the world system perspective in sociology, which insisted that: nations, countries, and societies were part of larger overarching global systems. Furthermore, the central organizing principle of that worldwide system is global capitalism, in which large corporate entities with disproportionate power following the logic of profit making have disproportionate power to create a world of great wealth, technological wonders, an amazing global transportation and communication

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infrastructure, and a vibrant multifaceted global culture, but also one facing pervasive human and societal inequalities, vast new mechanisms and institutions of violence, and the threat of planetary ecological calamity. Technology, science, and innovation grow out of this political-economic system.21

What we have then is an understanding of biomedicine as a part of a global power structure, participating in the growth of what is called income disparity, that rising wealth gap, but which I’ve taken to calling “income despair-ity,” focusing on the costs of that inequality at the bottom. Why focus on biomedicine as a global power? It’s a big industry and has important consequences, but it is hardly the whole of global capitalism. I think it occupies a particularly important place in “our hearts and minds,” as conquerors like to put it. Advanced capitalism has brought a switch from being producers, or workers, to being consumers. We want the goods and services—it’s easy enough to see with fancy shoes, the status symbol of brand-name sneakers or high heels, and it is there too with safe cars, travel, and—life itself. There is a role for global capitalism in making life. Biomedical imperialism is, if not the mechanism, surely one of the key levers in the survival of the 1% version of capitalism. People want what it is claiming to offer: health and long life. What does it mean to think of nations as resisters to biomedical imperialism as a world force? Sure, individual nation-states can serve as players: They matter. In most of

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the world there are shared consumption and distribution units; the nation, not the individuals, are consumers of biomedical services and products. In the US that’s called socialized medicine and seen as resistance. But is it really? What if there were only one chocolate manufacturer on earth and each country purchased all the chocolate from that one seller? Finland can afford through its tax system to buy one package per person and can distribute all of it absolutely equally. The US can also, let us say, afford one package per person. It buys packages and then puts them up for sale, and some people have more chocolate than they could ever eat—chocolate rotting in basements of second and third homes—and others haven’t tasted it in years. Some children have heard of chocolate but never seen it. Does that mean that the chocolate industry isn’t capitalist? Capitalists own, invest in, and profit from the production of chocolate—it’s purchased. How it gets distributed is not their problem. What has happened to genuine resistance? Refusals to buy? We have seen the consequences of biomedical imperialism to resisters as disparate as practitioners of acupuncture, herbalism, and traditional midwifery. Some have been co-opted by the Biomedical Empire; some closed down. Medicine and biomedicine is more than just an industry. Imperialism works by creating feelings of loyalty to higher powers. It becomes a belief system, a value system—dare I say?—a religion.

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BIOMEDICINE AS A RELIGIOUS POWER

Medicine is the state religion of the postmodern, postindustrialist state. That is, of course, the kind of thing one jokes about, but like many of the things we joke about in life, it’s serious. Deadly serious. People invoke medical gods and use medical rituals because life really is scary. Religion addresses the fundamental existential question: Who are we and why are we here? Biomedicine sometimes reduces us to our biology in ways that can be deeply offensive to religious people. The geneticists who worked on the human genome project, an attempt to map the full genome, certainly sounded religious, awestruck and overwhelmed by the power and majesty of the DNA: It’s the Bible, the Holy Grail, the Book of Man— those were their very words. James Watson, one of the formulators of the double helix, told us that our fate lies not in our stars, but in our genes.22 Since then geneticists have had to recalculate the simple number human of genes, which is far fewer than they originally thought, and mostly have moved on from explaining us as simply genes-grown-up. But for the biosciences, the answer to who we are, to what we are, the meaning and place of life, lies somewhere in evolution, in the body, in the world of bioscience. Just as for the priests and religious officiants, the answer lies somewhere with God. Like other religions, biomedicine’s ultimate power does not rest with its priests or officiants—the doctor is no longer a god, as it sometimes seemed in the middle of

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the 20th century. But just because doctors have been brought back down to earth, that doesn’t mean the power of the religion isn’t there. Consider Catholicism and the accusations that priests have abused their power. That is not an attack on the religion or an attack on Jesus—it is a statement that the human representatives of the religion are just that: human. They have frailties and failures, they make mistakes, and can be individually or collectively sinful. Physicians similarly can and have been called to task repeatedly, accused of all kinds of medical errors and wrongdoing. But who can testify against a physician? Who can judge a physician? Other physicians. The power of the religion is not threatened when individuals fail to live up to its values and expectations. There is much fascination now with the way people consult the internet in ways they used to consult a physician, if they had access to one. A question comes up: Is this bump, feeling, rash, ache normal or a symptom of some pathology? Look it up, google away, see how reputable doctors define it. Almost always, with any question at all, the answer involves “ask your doctor.” But “your” doctor? One doesn’t just choose the most locally available physician, especially for people who live in urban areas. They use informal networks of friends, social media, listservs, etc., and look online to find a doctor they can trust—the doctor recommended not just by their friends, but one medical authorities, other doctors, have vetted. And if they do not like something their doctor says, or do not agree that a particular treatment or diagnosis

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makes sense—they see another doctor. Most assuredly, people do not trust the judgment of every individual physician, or any particular doctor they might encounter—but they go to higher medical authorities, look at the literature of medicine, the articles posted online by authoritative medical sources, and use that information to choose or to argue with any given physician. That is no more a rejection of the religion of medicine than searching the Bible yourself when you disagree with your minister or priest is a rejection of Christianity. Thinking of medicine as a religion grows out of listening. The language of miracles permeates discussions of medical events; we hear people talking about being “saved” by medicine, and of having “faith” in their doctors or in particular branches of medicine. We hear people saying they “believe” in some aspect of medicine, whether it is weight loss surgery or chemotherapy. It is appropriate to use the language of religion to understand the role and place of biomedicine in contemporary life because when you question medicine, when you violate its tenets or do not participate in its rites, you are treated as a heretic. You’re going to give birth at home? With a midwife? And not go to the hospital? Are you trying to kill your baby?! Or—You don’t have regular check-ups? Are you suicidal? Or—You aren’t being screened for six kinds of cancer every two years? No regular mammograms? Not screening for colon cancer? What, are you crazy? If you hesitate on a particular vaccine for your child, oh you! One of those anti-vaxxer crazies! Those

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responses of horror, of disbelief that one could do (or not do) such things, point to a set of honored beliefs and values that are much like what one finds among the devout of any religion. It’s not about facts. Offer the data that home birth with a midwife has lower morbidity and mortality rates for your situation than the hospital, and people just roll their eyes and say, “But what if something goes wrong?!” Show the data for any particular screening or checkup that clearly shows no benefit and much risk of diagnostic error and harmful overtreatment, and people just roll their eyes and say, “But what if they found something?!” Some things in life are data proof, they are deeply, devoutly held beliefs that have nothing to do with research findings. That is why it makes sense to think and speak of medicine as a religion, a faith-based practice. It is only relatively recently that medicine, as a profession, adopted the idea of evidence-based practice, that medical procedures, services, and activities should be based on scientific, research-based evidence.23 If people’s ideas—or more accurately their feelings— about safety are not data-based, thoughtful, risk assessments, then what are they about? Some things feel safe, and some things feel risky, even when we know it’s not logical. One oft-discussed example is air travel. Lots of people boarding airplanes feel fear. It’s a crazy situation, sitting in a metal box in the clouds, gliding down over buildings and streets, and landing on those little wheels. But we know that the chances of being killed in a car

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accident are far greater than being killed in an airplane. Mile for mile, the trip to the airport is something like 60 times riskier than the flight. Daniel Gardner looked at what he called the “science of fear”24 and said that even if terrorists were hijacking and crashing one passenger jet a week in the US, a person who took one flight a month for a year would have only a 1 in 135,000 chance of being killed in a hijacking, a trivial risk compared to the annual 1 in 6,000 risk of being killed in a car crash.25 The shift from planes to cars after 9/11 lasted a year, and an extra 2,595 people died as a result, about 60% of the total deaths from the 9/11 disaster, and six times the total number of people on board the doomed flights on 9/11. Cars are more dangerous than planes. But people applaud when the plane lands, not when the car pulls into the parking space. Tjeerd Tijmstra did research years back on newborn screening.26 If you ask parents what they would do if there were a test that could tell them if their newborn baby has a very, very tiny chance of having some terrible could-be-fatal condition, they pretty much all want the test. And if you say, as he did in his hypothetical, “What if the only testing facility is way up in the North of the Netherlands? You’d have to drive the baby for 5 hours to the testing center.” Well then, into the car! And if you tell them further, as he did, that the chances of the baby being killed on the way to the testing center are very much higher than the chances of the baby having the condition, it changes nothing. They say something along

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the lines of “Don’t be silly–we’re not going to get killed driving there. But if there’s a risk that the baby could have a disease you can test for and maybe try to treat— how could we not test?” Taking risks in daily life is acceptable. Violating the medical tenets of safety, not consulting medical authority, and not abiding by their pronouncements, that is simply not okay. It’s not rational. It’s not about risk. It’s about the feeling of riskiness and the feeling of safety. Responsibility needs to be turned over to the higher authority. Nonrational things we do to feel safe are often called superstitions. Knocking on wood, throwing a pinch of salt over your shoulder, lighting a candle, saying or not saying certain words—our rational self knows these won’t save us, but they makes us feel safer. Superstition is what people generally call other people’s religions. Quite a bit of biomedical knowledge is based on knowledge and reason. But it is only recently that physicians adopted the idea of evidence-based practice as a standard, requiring knowledge and reason to back up practice. And much of what becomes popular understanding based on medical practice has nothing to do with evidence. Consider the examples given above, that people trust medicine even when you can show them that the medical practice on offer—the balancing of risks in the example from my Dutch colleague, or the value of particular medical settings and services—is not justified.

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In my own work on maternity, one striking thing that shows up is that a woman whose period has never been more than a couple of days late, who is actively trying to get pregnant, and is five days late and feeling breast tenderness will go out and buy a pregnancy test. And if it determines that she is not pregnant? She will test again. And again, until she gets a positive, and only then will she tell people she is pregnant. The pregnancy will not be declared until it is biomedically determined. This determination may take place in the privacy of her own bathroom, but it is biomedically declared. The parents of a child who had a fever will—even though the child wakes up cheerfully one morning, looks fine, is jumping out of bed, and feels normal to the touch—take out a thermometer and take the temperature to declare the fever gone. It is not about knowledge, experience, or reason. It’s about belief.

5   W H AT H AV E W E LO S T ? W H E R E D I D THE CARE GO?

Moving what used to be care—care for the sick, care for the elderly, care for new babies and birthing women, care for the dying—into management problems for the Biomedical Empire has its costs. Yes, again, there is good that medicine does, drugs that have been created and procedures invented that help people. But it is also true that something has been lost—and I think perhaps the word care sums it up. In the US we talk about someone having or needing health care and we mean medical insurance: Do they have the resources to pay for the services the Biomedical Empire and its local industries provide? Sometimes it seems that all academics do is make up new words or get all pedantic about specific meanings for ordinary words. And believe me, I know how annoying that can be. But words are all we have, all that there is between me sitting here at a keyboard and you reading, just words. Being able to name something, to give an idea 52

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a defining word, truly matters. As an undergrad I took a course in the psychology of learning—one of the most useful courses (besides typing) that I ever took. How do people learn? Learn that and you can learn more. One of the things the professor told us was about an experiment where they took a person into a room that had a big white wall with one square of blue fabric taped on it. Then they walked them into another room that had lots and lots of squares of various shades of blue and asked them to find the shade that had been in the first room. Some people shrugged and gave up. Others slowly evaluated the squares until they found the matching shade from the previous room. What distinguished the ones who could from the ones who couldn’t? Naming. The people who were able to find the shade among so many had named it when they first saw it. Some were color sophisticated—maybe they had that supersize Crayola box when they were kids and recognized aquamarine. But some saw the first square, said oh, my sister had an ugly raincoat that color, and then walked into the second room and said, no, that shade’s lighter, that one’s greener, oh, that’s it, that’s the color of my sister’s raincoat. Naming something enables you to recognize it when you see it again. Naming something enables us to talk about it and know we’re all talking about the same thing. So forgive me if this is a wee bit pedantic, but let’s define our terms. For years I’ve been—fussing? obsessing? let’s be kind and call it concerned—about the use of health when people mean medicine. Let me begin then by defining health.

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That’s not easy to do. I think of that classic line about pornography; we can’t define it but we know it when we see it.1 I think of health as a state of being in which the body isn’t giving you much trouble and is even capable of giving pleasure. The idea of a healthy person is always and inevitably contextual—someone who cannot walk or hold themselves upright, cannot lift their head, and cannot eat solid food can of course be perfectly healthy if they are three months old. Someone who can only walk across a room very slowly, with some support and frequent stops, and who needs a bathroom every couple of hours can also be considered quite healthy, if they are 94 years old. Someone who has shown no sign of breast development or menstruation at 17 years of age can also be quite healthy, if they are male. So in some ways health means meeting the expectations for a person of your age and assigned sex. Maintaining health requires what we think of as a healthy environment: clean air, clean water, access to good food. Take any of those away, and people become unhealthy, become ill. And then medicine steps in, offering attempts to return them to health. Health care, as I would have us use the term, isn’t about medical services, but about maintaining health, providing what people need to be healthy. And that is where the work we know as public health began, in an attempt to bring a healthy environment to people who were living in unhealthy conditions. Public health improvements in water, sanitation, air quality, and housing (e.g., requiring

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windows in tenements) led to an enormous reduction in the mortality rates of infectious diseases, long before the development of medical treatments like antibiotics and immunizations. F R O M P U B L I C H E A LT H T O M E D I C I N E FOR ALL

The term public health came into widespread use in the US through the work of Lillian Wald, a nurse who graduated in the 1890s and moved to the Lower East Side of Manhattan. It was a poor area, home to many immigrants at a time of economic depression and of infectious disease spreading—a time not unlike our own. She developed a program which rather than blaming poor people for their condition, as so many did then and do now, attempted to help. She brought us the first public playground, giving poor children a place to be outside, to get that fresh air and sunshine that their overcrowded homes did not provide. What became Henry Street Settlement brought together union organizers, lawyers, and activists along with nurses. They worked to improve the quality of life for the people who lived there. I am lucky enough to live in that neighborhood now, changed in many ways from what it was then, but still there is poverty and Henry Street Settlement still works to improve living conditions. Other public health programs of the era similarly focused on what we would now call environmental factors. Clean water came to be understood as truly essential

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to good health; disease passed into the bodies of people through contaminated water. Sewage programs grew in cities all over the world, a public health measure. The underlying logic of what public health was doing was that if you improve the conditions under which people live, if you give them a healthy environment, they can attain and maintain health. The way the word health is used now, at least in American English, has morphed: Health has come to mean “medical.” Health care isn’t about air and water quality, let alone building playgrounds. Health care means medical services—and often just means the money and resources to access them, or to have a job with “health care.” It has become both very individualized and very professionalized. Medical services are what medical practitioners deem appropriate. And those services are provided not to communities, but to individuals. That is why sometimes it has come to feel as if public health is the advertising arm of the medical industry, addressing not structural or communal issues, but encouraging individuals to “ask your doctor,” to seek medical screening and testing and treatments. I remember first hearing this, years back, staying at the home of Annemiek Cuppen, a Dutch midwife friend who was taking some courses toward a degree in public health. There was much talk at the time of a hole in the ozone layer, how unfiltered sunlight might be presenting an increased danger of skin cancers. The public health message she was learning was: Get screened by a dermatologist! Apply sunscreen!

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She came home, sad, shaking her head, and said, “If these people had found those contaminated wells that were responsible for cholera infections, they would have been telling you to buy bottled water.” This confusion of health care and medical services is most assuredly not a specifically US problem. I’m going to take as a point of comparison a discussion of Chile, with deep appreciation to the work of Howard Waitzkin and Rebeca Jasso-Aguilar.2 This is just one example of many, but it’s held an important place in the discussion of imperialism and colonial powers more generally. Waitzkin and Jasso-Aguilar claim that the empire in which the United States represents a colonizing nation, and Chile represents a historically colonized nation, is now at a point of ending. They refer to the work of Wallerstein who helped us to understand that during the 1500s a world system emerged by which a core group of nations began to come into control, eventually subjugating other nations.3 By the 20th century, the decline of colonialism brought us political and economic neocolonialism in which poor countries still serve the interests of richer countries in substantially similar ways. Most of that historical discussion has ignored the particulars of health, health care, and medical services. A noted exception is the work of Navarro (cited in Waitzkin and Jasso-Aguilar,) who looked at the “underdevelopment of health, resulting from the depletion of natural and human resources.” The health-care and medical workers trained in those poorer countries disproportionately migrate to the richer countries, where

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their work will be better paid, the “brain drain” phenomenon. And those that do stay profit from the high class position offered to medical/health professionals, thus often allying themselves with “the capitalist class—the national bourgeoisie—of less developed countries.”4 The increasing industrialization of medical services has, as discussed earlier, put even the highly paid doctors under the control of corporate systems. In some ways then Chile is just another example of a poor exploited nation. Enter Salvador Allende, who, as a minister of health for a popular-front government, did a serious analysis of how political and social organization has consequences for individual bodily health. His 1939 book (cited in Waitzkin and Jasso-Aguilar) is a model of a genuinely public health approach centered on social structure. “He argued that high infant mortality, skeletal deformities, tuberculosis, and other infectious diseases all had roots in inadequate nutrition; improvements depended on changed political and economic conditions.” Similarly, he looked at clothing, housing, and sanitation. “In considering reform and its dilemmas, he reviewed the social origins of illness and the social structural remedies that were necessary,”5 refusing to separate illness and disease from these macro level issues. And then things began to get a bit slippery, health morphing into medical, and care meaning “services paid for.” Of course I am oversimplifying, but this is a short book. By the post–World War II era, international attention was

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paid to “development,” first in terms of European recovery and economic reconstruction, but increasingly through international organizations like the World Bank, the poorer countries were being reached. That money spent on them was, as others have pointed out, mostly loans, which, when all was said and done, just drove the poorer deeper into poverty, as loans tend to do, be they from corner moneylenders or the World Bank. Foundations entered, the philanthropic arm of capitalism, and began to work on issues of what Waitzkin and Jasso-Aguilar group as “health services and public health around the world.”6 Health—or at least the absence of disease—in poor countries is ultimately in the interests of the wealthy who use those workers. But the direction of the work shifted to what Waitzkin and Jasso-Aguilar call “vertical approach”: “Rather than employ such broad public health initiatives targeting disadvantaged populations, the [Rockefeller] Foundation favored a magic-bullet approach prioritizing new vaccines and medications that could prevent and treat infectious diseases.”7 The WHO followed suit, and while it gets called public health, the focus was on universal entitlement to primary care services, that is to say, access to medical services. Individual entitlement doesn’t mean access—it means the countries themselves have to allow the biomedical industry to grow, and that may well be a contributor to national debt. So yes, there are still fights to get people clean water— a rich discussion of that fight in Bolivia is offered by

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Waitzkin and Jasso-Aguilar,8 and in the US we are confronted by the problems of Flint, Michigan—but the general thrust was access to doctors and to medical providers. And what has that meant for Chile? There is still poverty, still vast economic inequality. And poverty has—as it always does—consequences for health and for life. Putting it as simply as possible: “Robust empirical evidence was obtained, which indicate that the education level of the mother, household socioeconomic status, sex, zone, and region of residence determine opportunities to achieve good health in Chile.”9 One could hardly expect otherwise. But consider some specifics: Chile has a million and a half diabetics, some 12% of the population, the highest prevalence in South America, and growing. This from a book on The Diabetes Challenge in Chile, apparently produced for a conference, organized by universities and diabetes organizations, and sponsored by Novo Nordisk, a multinational Denmarkbased pharmaceutical company, and the Danish Embassy.10 The book focuses on individual education, lifestyle changes, and treatments. Type 2 diabetes is a disease of industrialization—processed food, physical inactivity, sitting, eating what’s cheap and available. Traditional diets have been pushed aside by industrialized food, family cooks replaced by factories. Playgrounds and healthy food? Structural change? Nope. Sell more products. The buy-bottled-water solution Annemiek Cuppen saw coming. And one more important fact about Chile: By 2014 the Caesarean section rate had risen to 45%. Almost half of all

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babies were born via surgery. The rates were particularly high among women who were less wealthy, in the public sector, but had been given—in the interests of that idea of entitlement—access to the private hospitals: “Roughly, three out of four publicly insured women who opt to give birth in a private hospital will have a C-section, even though there is no evidence that these women would have been more likely to have a C-section out of medical necessity.”11 And women who wanted a home birth with midwives, despite clear data that it is just as safe for these “low risk,” i.e., healthy, women, and surely even lower risk if one faces that kind of C-section rate in the hospital, faced outrage and distress from family members and friends.12 The hospital somehow is the “hygienic” location for birth. Hospitals are so clean, so sanitary, so safe—I guess that’s why when facing COVID-19 we were all told to go run to our nearest hospitals? Actually no, what we were told was to stay home, stay out of hospitals precisely because hospitals and nursing facilities were hotbeds of infectious spread. The idea of diagnosing and medically managing the body, from birth to middle-aged diabetes, is now profoundly rooted in Chilean culture, though now, with what Waitzkin and Jasso-Aguilar call the “end of empire as we have known it,” those decisions are made by Chile, for Chile. Chile too is part of the Biomedical Empire and accepts its offerings. Public health—what I mean by public health, the public health Salvador Allende and Lillian Wald had in mind

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rather than the version brought to us by the Biomedical Empire—wouldn’t have been all about access to medical services. It would have meant true care of the health of the public, would have brought us healthier mothers and babies, and a better nourished population living healthier and likely longer lives in healthier circumstances. PAT I E N T C I T I Z E N, C I T I Z E N PAT I E N T

We are citizens of the Biomedical Empire, not a world devoted to maintaining our health, but to colonizing our bodies and our care, to create of us what Ivan Illich so thoughtfully observed as risk-averse consuming objects. To be a citizen of that world is to enter the world as patients, and most often to leave it that way as well. What does that mean, to be a patient? Uh, bear with me, be patient, but it’s almost funny when you look at the dictionary definitions of patient. As an adjective, it means “able to accept or tolerate delays, problems, or suffering without becoming annoyed or anxious” and as a noun, it refers to a person receiving or registered to receive medical treatment. When I think about every conversation I’ve had with any friend or family member about medical treatment they’re receiving, or “registered to receive,” delays, problems, suffering, annoyance, and anxiety are omnipresent. The patient role is to become the object of other people’s actions. Think about little children playing doctor. Some of it is the odd pseudo-sexuality of the patient role,

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the bodily exposure which would be totally unacceptable elsewhere. But it is also the passivity that children are playing with, making someone else do what you tell them to do with their bodies. Children know that doctors are allowed to touch you in places and in ways that no one else is allowed to do. They know that their parents will protect them from being hurt—but not in the doctor’s office. Being a good patient means just taking it and not complaining—not showing annoyance or anxiety, and bravely bearing suffering.13 The women’s health movement of the 1970s and onward, the work that brought us Our Bodies, Ourselves,14 rejected the omnipresent use of “patient” for women receiving what had become defined as “medical” services. Women wanting contraception, abortion, and women seeking help with birth were not, we claimed, “patients.” We were not sick. And we did not want to be passive. That movement, and other social activism within medicine, sought a better word and tended to settle on consumer. The individual seeking medical services was a consumer, and the doctor or nurse or other worker was the provider. Frying pan to fire—it sounded like being a consumer rather than a patient would bring more power, but it hasn’t worked out that way. A consumer is a customer, and we have it in our heads that customers have power. “The customer is always right.” But that actually was never about giving power to the customers or consumers; it was about stripping it from the frontline providers. The

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phrase was coined in 1909 by Harry Gordon Selfridge who founded a department store in London. It was popularized by other big business owners. It’s not about empowering the customer, but about controlling the workers—management will side with the customer against the employee; that’s good business. The frontline employee was stripped of power and placed under the control of management. That is something that doctors and nurses—and college professors too—are beginning to experience.15 Owners of small businesses can set their standards, and if they don’t like you, don’t approve of you, they can refuse you service. I am not arguing for the joys of that; it’s been used for horrible reasons. But just as it can be used in the most racist of ways, for example, to refuse a Black customer service in a White-owned establishment, so too can it be used to reject a customer who is using racist language and insulting the owner or worker. When medical practices were primarily small businesses, with a single owner quite common, doctors could argue with their customers in their own fashion, for their own reasons. The doctor was always right; the doctor was the god. Once medicine came under a more large-scale industrial model, with even the prestigious physicians being employees, the control came down not just against the individual patient but against the providers themselves, just as in every other large-scale business practice. The industry, the company—be it the makers of new

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laptops or the owners of new medical centers—decides what is to be offered and how. Where there is competition—different companies offering different goods or services—the consumer can exercise the control of choice. But if the companies are either owned or controlled by a single power, or all the companies share a decision about a given offering, the consumer can at best take it or leave it, but cannot exercise much choice. This is one of the complaints one sometimes hears from people who are part of a singlepayer system who can only get the services the government offers, or from people insured by a single private insurer who can only access some types of services and not others. In medicine as in pretty much anything else, the role of the customer to choose is pretty tightly linked to wealth: With enough money you can travel literally—as in crossing borders in medical tourism—or figuratively, as in switching to an “outside” provider—and get the service you want. For most of us, that kind of choice is just not available. You consume—or not—that which is made available. Take it or leave it. Being a customer or consumer has failed to free patients. But it also fails to address the inherent passivity in the patient role. To be patient is basically to lie there and take it. Part of what the women’s health movement was responding to in our argument against the language of “patient” was that it made it sound like we were sick,

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when it actually is a pretty good indicator of physical health if you are seeking birth control, abortion, or birth services. But the other objection was to the passivity in the patient role, and this goes beyond fetal extraction or IUD insertion procedures. For some of the things people seek medical services for, really the best thing you can do is just lie there and be still. Break your leg? Just lie there and let someone set it. Have an infected toe? Just be still while someone lances it. But is that true for everything? It just sounds so hokey or old-fashioned or new-agey, but sometimes your body does know what it needs. Sometimes that’s about food— and clearly in a postindustrial world in which the food we eat is so far from a natural diet, so based on manufacturing needs, it’s hard to trust one’s food yearnings. Milk and dairy, much cultural knowledge tells us, can build up phlegm, not a good sign with potential respiratory ailments. Is there a solid body of knowledge about what foods would be better or worse for someone with early stage COVID-19, what they could eat that might reduce the odds of progressing to more severe symptoms? A lot of silence on that. I waited for public health announcements to help us figure that one out. I’m still waiting. Sometimes it’s about positioning—for so much of medical care we’re asked to lie down flat on our backs. The hospital beds can do some positioning, but the wires, catheters, and tubes we may be hooked up to encourage just lying there. And that becomes the position we associ-

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ate with getting well. Sometimes lying down makes good sense, but sometimes not so much. When the COVID-19 pandemic started, I had good reason to think I would get the disease—I lived in New York City, I’d been very much out and about, on subways, at the Port Authority bus terminal, at theaters and restaurants, and with all the anti-Chinese sentiment the pandemic engendered, I went off to Chinatown for dinners (in largely empty restaurants, sadly) in those last days before everything was closed down. I’d had pneumonia as a teenager and thought about that. I live alone now—if I got sick, what would I need? I used the early lockdown as so many of us did, to clean closets and cabinets that hadn’t been touched in ages, to hunker down in my nest. But I also read about how fresh air worked for healing people during the 1918 influenza epidemic and opened the windows wide and left the heavy quilt out for warmth. I piled the pillows I had around on my bed, so if I was so weak I needed to go to bed, I could sit up. I can still remember being encouraged to keep lying down with that teenage pneumonia—and how hard that made breathing. Sitting up felt better, but then I was told I wasn’t taking care of myself; I had to “be patient.” (Hey, if my mother’s reading this, I understand, Dr. Green kept telling me that too.) The terror of not being able to breathe dominated much of the discussion of COVID-19 in its early days in New York. It played hauntingly against the George Floyd murder, the choke holds used by police

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against Floyd and other Black men. The lack of enough ventilators was a constant discussion. But a couple of months in, articles started to appear about prone (face down) positioning, about not putting people flat on their backs.16 The classic patient position is more about medical service providers’ access to the patient than about the patient’s own bodily improvement. That physical positioning has meaning: The patient is passive, the medical personnel are active. Healing is done to the patient, not something the patient engages in. The passivity of the patient role, problematic in so many ways, reaches absurdity when we talk about giving birth in the lithotomy position, flat on your back with your legs in the air. But it’s not random; it’s built into the concept of the patient, the one accepting, tolerating, and yes, suffering. That is what it means to be a citizen of the Biomedical Empire: to depend on the industry, to have faith in medicine, to not lose hope,17 and to be obedient. Be a good patient.

6  THE LAND OF THE SICK

The idea of sickness as a land, a kingdom in which one holds citizenship, offered famously by Susan Sontag, has entered ordinary discourse: Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.1

But if there is a kingdom of the sick, who issues the passport? Which passport we are obliged to use is not about our preferences. People cannot simply declare themselves citizens of the land of the sick or of the land of the well. We see refugees struggling to get in—to get benefits, to get services, sometimes seeking that passport in order to be moved from prisons to hospitals. Clearly something on the order of a doctor’s note is needed for 69

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anything from missing your high school math test to not being eligible for execution for murder. But there are also people struggling to get out, to be permitted reentry into the land of the well. It feels obvious that biomedicine rules the land of the sick, but being in charge of passport control places biomedicine in charge of citizenship in a far more profound way, controlling daily lives: from being declared well enough to get a job or sick enough to get sick leave. The diagnostic categories are vast, and as has so often been noted, ever-increasing. Jutel declares an entire “sociology of diagnosis,” enough going on there to qualify as a subdiscipline of medical sociology. Diagnosis is integral to medicine and the way it creates social order. It organizes illness: identifying treatment options, predicting outcomes, and providing an explanatory framework. Diagnosis also serves an administrative purpose as it enables access to services and status, from insurance reimbursement to restricted-access medication, sick leave and support group membership and so on.2

Diagnosis serves that “administrative purpose” in that it gives an individual permission to be ill. Early on in the development of medical sociology Parsons referred to it as a “claim for exemption,” allowing one not to fulfill expected norms, and also—importantly—that one can be treated rather than punished.3 Of course other medical sociologists have since pointed out that the difference between “treatment” and “blame with resulting punish-

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ment” is not always clear. Ask any three-year-old being held down for a painful procedure who is promising to be good if only you’ll stop. Or ask someone receiving electroshock therapy against their will. Diagnosis and the power to control the labeling means not only how people are treated, but the creation of classes and categories of human beings, the legitimation not just of the label but of the person. This has been driven home to me of late in the work of Kyla BenderBaird, who is doing her dissertation on trans identity and the law, “Standing Trans Before the Law.”4 She credits Hannah Arendt with the insight that “citizenship is the right to have rights” and points out that citizenship is not evenly distributed. Any basic history of the US shows the expansion of the category of citizen, with its attendant rights, from, simply put, the White men founders to include people of color and women. The inclusion of women did not erase the concept of gendered citizens, in the way that the inclusion of people of color was supposed to erase the concept of race as a legitimate category. Thus trans people stand before the law in the uneasy position of not having a recognized sex/gender status. To understand the unique relationship of trans people and the U.S. legal system, I propose the concept of medicalized citizenship. This concept captures how trans people’s identities are medicalized and how legal recognition is often contingent on this medicalization. Reliance on medical authority, including diagnosis and surgical requirements, demonstrates the law’s inability to reimagine bodies as well

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as its insistence on the naturalness and stability of gender. The courts’ deployment of this medical logic forces trans people to engage with the medicalization of their identities in order to gain legal recognition.5

The same way that Garfinkel used Agnes6 in probably the earliest sociological discussion of trans issues to show not only how a trans person constructs and enacts gender, but to show that we all construct and enact gender, Bender-Baird is making clear the way that all categories of citizenship are at root biomedically constructed and legitimated. The sex of intersex infants is biomedically determined and thus legitimated, but so too is that of every baby. A birth certificate is used to determine age and place of birth as well as identified-sex-at-birth; and birth certificates, like death certificates, require biomedical authority. As the individual moves through life, personhood, sanity, and competence, the right to rights requires biomedical authorization. To be declared brain dead, or to be declared competent—or not—means to be biomedically evaluated and granted, or not granted, the rights of citizenship. In this sense the ultimate authority on life resides with biomedical citizenship: the recognition by the Biomedical Empire that one exists as a person with rights, a citizen of that empire. To have any legal standing, one must be approved for Citizen Patient standing. Two moments at which that citizenship are in question are found in the thorny discussions around abortion and fetal rights, and at which point the fetus becomes a Citizen Patient with rights; and around the moment of death, the point at

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which one is moved from being a Citizen Patient to a discarded body, potentially harvested for any useful remaining parts, but no longer having rights as a citizen. What happens at those gates of life? How does biomedical imperialism control those gates, define life and personhood, and what does this do to us—as individuals, as communities, as societies? G UA R D I N G T H E G AT E S

Traditionally, religion functioned to connect the lived experience of the embodied to some imagination of a larger world. Religion, throughout time and place, in its many different forms, is used to mark the gates of life, to welcome newly created people and usher out the dying. That function is now ceded largely to biomedicine, with traditional religious figures serving as almost decorative administrators, officiating rites that the biomedical authorities have declared appropriate. Whether it is the declaration that the products of conception have become a baby to be baptized, or the hospital chaplain being called in to administer last rites when the doctors declare it time, the authoritative declaration of personhood, of citizenship, lies with the Biomedical Empire. The question “What is a person?” is obviously neither new nor really answerable. Here I am addressing the blurred boundaries of birth and death, but humans have long wrestled with the problem of personhood. Are women full persons, entitled to full citizenship? Does

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personhood and citizenship extend beyond defined racial boundaries? How about between species? Are there animals that should have human protections? At what particular moment in evolution did we become human? The answers to those questions too are increasingly being dealt with by turning to biomedicine for an authoritative decision. When we look back at the history of birth, the midwife seems to be an unscientific forerunner of the obstetrician. A historian, for example, writing in the 1960s—without a feminist framework or the sociological understanding of medicalization as a process—wrote of the Middle Ages: “The university physicians generally ignored this whole area of medicine. Midwives might or might not be qualified, but this was not a matter of public concern.”7 Medicalization combines with sexism in this view of the history of midwifery. More accurately, free of those prejudices, one would state not that physicians of the Middle Ages ignored this “area of medicine,” but that midwifery and its concerns were outside of medicine, just as matters that were undoubtedly of concern to women were outside of “public concern.” That is now (pardon the pun) inconceivable—nothing about conception or embryonic and fetal development could possibly be outside of the realm of medicine. A moment of clarity on this came when the US Supreme Court declared abortion to be a decision between a woman and her doctor, acknowledging that whether a fetus was a person, a citizen, a member of the society or not was essentially a biomedical pronouncement.

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Every aspect of procreation is entrenched in biomedical control, the deeply felt notion that in the sacred, in the creation of life, the proper rites and rituals must be observed, and only those in biomedical spheres can do that. It is objectively easier to fit a diaphragm than a shoe—diaphragms are after all just round. Is it really harder to insert an IUD than to pierce the genitals with gold jewelry? Feminist self-help groups of the 70s demonstrated how quickly and easily one can learn to do menstrual extraction or very early abortion. But at the very same moment that all throughout the world there is a demonstrable and much-bemoaned lack of medical providers for what is called basic women’s health care— i.e., contraception, abortion, and childbirth—there is a strong movement to prevent traditional birth attendants from providing services, to stop anyone but medically authorized players from providing any of these services. One more example of biomedicine as a colonizing power. In its control of decisions around citizenship, biomedicine addresses the fundamental meaning-of-life questions: What is a person? When does a person come into being and when does it cease being? Sociology can only tell us how people answer that, not what the answer is. For a while, the people mapping the human genome thought they had the answer: We are our genes. Our DNA makes us who and what we are. In the contentious American political world particularly, the question is absolutely smothered by the potential of abortion. The more the person is just DNA grown

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big, the less acceptable is an abortion: from the moment of zygotic zero, that first cell, that’s the person. But why stop at conception? Every woman, every month, one egg. That one egg that ripens in January, that’s an October baby, a baby with quite a few (dominant gene) traits already decided. And men? Every one of those sperm washed out of a teenage boy’s sheets, every single one of them, was a potential baby, its sex already determined, along with the dominant-gene characteristics of that sperm cell. The specificity of the fertilized cell, the zygote, seems to be what makes it possible to think of it as a person. But how specific is even that? You could implant it right now, and it’ll be a baby (if all goes right and it often doesn’t) in nine months. Or you could freeze it, and it might become a baby in 10 years. Is a person born in 2021 the same person as one born in 2031? And if you can freeze for a century? You could implant the same zygote in so many different people, places, times. . . Is it still the same person? You could potentially split it, and it would be two people. One could be implanted now, one in a century. You could grow one, wait 25 years, implant the other one in the first one and. . . My head is spinning. What IS a person? It’s not, I am not—YOU, dear reader, are not—those genes grown up. Even the geneticists now get that—there weren’t the 100,000 genes they expected; it turns out that there are worms with more genes than humans have. And we have DNA from a part of the egg that is not in the nucleus.

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Take that fertilized nucleus and move it to another ovum, as they have, and we get what is called a three-parentembryo. And those too need to be implanted somewhere, in someone, in a time and in a place, and that will make that embryo the person it becomes. There is not an existentially correct answer to “What is a person?” so the question of “When does personhood start?” is not a researchable truth. It is a social declaration. And biomedicine has taken on the authority to make the declaration. Life begins with fetal patienthood. Before that, those bits and pieces, strings of DNA, fertilized cells, are products to be manipulated and even sold as part of reproductive technologies, a significant part of the global biomedical industry, with parts and services— even gestational services—crossing national boundaries. The overwhelming dominance of biomedicine at the gates of life is even more obvious in the question of death. The transition from person to body must be biomedically officiated. Even if you weren’t present when your grandfather died, if you come in and find a partially rotted body on the bed, it is biomedical authority that is called upon to do what once was the work of a priest or other religious officiant: to declare death, usher out the dying, and help the living with the appropriate ritual performance. You dare not bury your grandfather yourself. It is clearly not for safety, for saving lives, or creating health that at the moment of death and at the moment of discovery-of-death biomedical officiants are called in.

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Much work on hospice and end-of-life care has shown how things so quickly slip back into biomedical management, extraordinary measures being used at that last moment, at that liminal time, no matter how clear all parties involved had made it that a gentle, nonmedical death was the plan. Doing the biomedical rituals and practices, relying on medical authority and judgment is, in each instance, seen as erring on the safe side, doing the right thing. This is best understood as a religious response, a grasp for salvation. In sum, biomedicine has replaced religion at the gates of life, determining who or what is a person. But biomedical imperialism is not only a religious force, not only a legitimating governmental power. Biomedicine is also an industry. What does that mean for how those gates of life are managed? A LO N E AT T H E G AT E S O F L I F E

Modern medicine, the underlying rationale for biomedical imperialism—free of traditional religion, state licensed, scientifically aspirational—emerged in the early industrial era. We call that period the industrial age for a reason: Factories were not merely economic systems or mechanisms of production, but a way of life. Productivity, efficiency, and measurable outcomes became values for human lives and relationships. These values extend into the postindustrial world, when the production is less about things and more about services, most assuredly including the services

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of health and medicine, and those too become valued in terms of productivity, efficiency, and measurable outcomes. What this has meant for human relationships in health and in illness are the questions we are grappling with today in the world, and specifically as the COVID-19 moment disrupts those services. There are things for which the highly standardized, industrialized, hospital system works really well. The gunshot wound in station 3 in the ER; the gallbladder in post-op; the below-the-knee amputation in recovery—the condition is the situation and the person is the particular location. The system knows how to manage the situation, and sure, some variations in the person might come to be relevant— under 8 or over 80 years old might make a difference for example. But basically, the protocol is based on the situation, the situation is the diagnosed condition, and pretty much all the players are interchangeable. Whoever’s on duty at whichever station—intake to X-ray to overnight linen changes—the bureaucratized, standardized response is pretty much going to be the same and work the same. And for most of us, most of the time, with that gunshot wound, that inflamed gallbladder, the leg that went under the bus or went down to gangrene from diabetes, we’re OK with becoming the patient and being processed through. We might want some hand-holding, someone who knows us and cares about us as individuals to wander by now and again, bring a touch of home, of the personal, to assure us we’ll get through this and back to the real world again. But we usually pretty willingly sacrifice

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individuality for the gown, the bed, the food, whatever the hospital serves up, in trade for the services. Birth and death aren’t procedures, something for which the existentially constant you suits up, deals, and comes through the other end. They are definitionally transformative. You will never be the same. The one of you will be two. Or none. And the people who love you—they will never be the same. Your spouse will be a parent or will be widowed. Your parent will be a grandparent or bereaved beyond measure. Your child will be a sibling or an orphan. Sometime over the course of their development as an institution, hospitals became essentially factories, processing people through procedures of various sorts. While my career has mostly focused on how childbirth became medicalized, I’ve also looked at death and dying and found that, not only were the questions often the same, the political movements to humanize often the same, but perhaps surprisingly some of the same people moved back and forth between the two movements: Midwives worked in hospice care; one I interviewed went on to run a funeral home. In both birth and death, a person in the center is undergoing an unimaginable transformation, and those who love them are hovering around, often feeling helpless. The midwife—or doula, or death doula— works not only on the physical transformation of the bodily being at the center, but also on the social relationships between that being and those who surround them. Those are the people who will be raising this child as a community in support of the mother and the child; those

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are the people who will be grieving and supporting each other in their grief. Hospitals have been selective about permitting these others—the family and the community—to be present for care. Early on, they did not allow parents to be with sick children in the hospital, having rightly observed that the children were less stoic, compliant, passive, just not as good patients, when they had their loved ones around them. Those loved ones, mostly parents, fought for the right to accompany their children. The childbirth movement was not only about respectful treatment by the service providers, the nurses and obstetricians who did various fetal removal procedures on the birthing body, but was also an attempt to allow the birthing person social and emotional support from people who know and care about her. And the hospice and palliative care movement, similarly, was not only about the treatment of the body at the center, but also about the ones who are losing that dying being. What the response to COVID-19 demonstrated very clearly was that these niceties and humanizing touches were not understood as central to the services and mission of the hospital. People birthing and people dying were patients and were to be isolated. There has been push-back, which has varied by, within, and between nation-states. Some places do allow a companion for a birth, and some for a death. The consequences of isolation are inevitably even harder on those who are less valued within the system. In birth and in death, race and class have come to the fore: People who have not been

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treated well by medicine, poor people and people of color, and most specifically poor Black people, have suffered most under this regime. The idea of one’s loved one dying alone, utterly and totally bereft of anyone who knows them or cares about them as an individual, is a devastating scenario. Picture someone you love, your child, your spouse, your parent, in a room with—at best—properly garbed workers checking in on them, but no one truly with them. This is what COVID-19 has brought us.

7   D E AT H A N D DY I N G A S S E E N THROUGH THE LENS OF COVID-19

S U D D E N D E AT H

Sociologists have been looking at, and been troubled by, the medical management of death and dying for a long time. Medical sociology as a specific area of sociology— courses offered, special journal, all that—goes back to the 1950s.1 As sociologists began to find a place for themselves in hospitals as researchers, sometimes as faculty members in medical schools, death-in-hospitals was laid bare before them in ways that nonhospital staff had rarely seen. By the 1960s two classic, truly influential books had been published: Glaser and Strauss’s Awareness of Dying,2 and David Sudnow’s Passing On.3 Glaser and Strauss were well-known and valued for their work in developing the research approach known as grounded theory, which is, to put it simply, not walking into a research project with a hypothesis to be tested, but with an open, inquiring, sociologically informed and 83

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focused mind. (As I tell my students “What the hell is going on?!” is an excellent research question.) In Awareness of Dying, they were observing in hospitals and saw that patients weren’t told they were dying. Not by their doctors or formal caregivers anyway. They found four approaches: Sometimes there was an open awareness, an acknowledgment of what was happening; but more often there was a closed awareness, in which staff kept that information from the patient; sometimes, of course, the dying person suspected; and sometimes there was an odd mutual deception in which everyone rather politely ignored the subject. David Sudnow’s Passing On functioned as something of an exposé, showing that the social worth of the patient had consequences for their treatment. The drunk slumped on a street corner wasn’t treated the same way as the middleclass, nicely dressed person. The former was more likely to be pronounced dead at the scene, the latter more likely to be rushed into the hospital for resuscitation. It’s the nature of how big institutions/industries/systems work that decisions regarding policy are made at the top and carried out at the bottom, or what gets called more politely “on the front line.” Rather than risk being accused of valuing some lives over others, the decision was made in most places to just try CPR (cardiopulmonary resuscitation) on everyone, bring them in, and not declare death until they were solidly in the ER and CPR had been tried.

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That left people with the idea that CPR worked, brought people back from the brink of death—which can happen, especially with electrocution, drowning, or other sudden deaths of young, strong, healthy people. But overwhelmingly, it fails either outright or just prolongs the dying process for a few hours, days, perhaps weeks. And it’s important to note that CPR is pretty horrific in practice. The pressure applied routinely breaks ribs. The idea that someone dies suddenly and either immediately on their dead body, or perhaps just as they are finishing up their dying, you cause them that extra pain, pull them away from any comfort—why? It would be one thing if it worked, but we know it rarely does. Stefan Timmermans’s title, Sudden Death and the Myth of CPR, is itself enough to distress people.4 If your 93-year-old very sick great grandmother was just finishing the last bites of her favorite soup that you spent all day making when she slumped over—should you hold her tight, whisper that you love her, or quickly put her on her back and break her ribs and apply electric shocks? Timmermans argued for some respect shown for sudden death—it is after all what most of us wish for ourselves and those we love: to die quickly, maybe ideally in your sleep, or just suddenly. But look at the reviews people have written on open websites about that book— while some people, lots and lots of people actually, really value and appreciate what he did, others freak out. This goes back to that issue I began with in chapter 1 on the

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good that medicine does. It’s actually not the same to resuscitate a dying 93-year-old and a younger person with a sudden heart attack. But not resuscitating, now that CPR has become standard, sounds like accepting death, even causing it by inaction. It shouldn’t be surprising that when one of the largest industries in the world, one of our most deeply held shared belief systems, and our legal systems all say that medicine is there to fight death, that we think the appropriate response to death is to fight it. So when the COVID-19 moment happened, when the pandemic overwhelmed our hospitals, and management decided a return to essentials was necessary, and asked that EMTs and ambulance teams responding to sudden deaths not do unnecessary and useless interventions, it did not go over well. A New York Times article in May 2020 addressed the issue: Before coronavirus cases hit hard a few weeks ago, John McAleer, a paramedic who responded to the call for the 90-year-old woman (who had collapsed on her bedroom floor), would have begun chest compressions. His partner would have started an IV to administer epinephrine, which acts as a stimulant. They might have used the defibrillator to try to shock her heart back to life. He would have done this even though studies have found that only about 1 to 3 percent of people found in her condition can be resuscitated. For that is what emergency workers have been trained to do: make every possible effort to save every life.5

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The paramedics quoted in the Times were deeply troubled by the decision to suspend, or limit, resuscitation in cases when the odds of survival are near zero. The same issues have come up in other cities as the pandemic wore on, notably Los Angeles. Exceptions are made to that, for instance for those under 18, for pregnant women, and for survivors of near drownings. But the earlier policy of attempting to revive in every case influenced how the paramedics saw their jobs, as well as what families and bystanders expected. Those expectations, the article reported, were of course heavily influenced by mass media. On television shows, something like 70% of the people who appeared to have died and get CPR recover. The medical literature has been reporting the failures of CPR for a very long time, and the Times article cited a New England Journal of Medicine article from 1994 that the chance of survival when the heart has “flatlined,” where there is no heartbeat, is “vanishingly small.” So, if you had taken your dying, slumped-over great grandma and done all that to her, you would not have brought her back. And if she still had some bit of a heartbeat, and was among that small percentage that survives, she wasn’t going to be dancing at her 100th birthday, she was going to die slowly and locked in an ICU unit. That is what COVID-19 has done to sudden death: It made the New York Times respond to the fantasy land of Grey’s Anatomy.

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S LO W D E AT H

That’s the quick death for lucky people who make a sudden emigration out of the land of the living. Few of us get even a chance of that kind of exit. Most Citizen Patients either get an early and startling diagnosis—a cancer or other fatal disease—and start our dying process from there, or fairly typically start collecting an assortment of diagnoses and pre-diagnostic conditions as we age. Either way, the path out usually involves a series of hospitalizations, a series of eventually failing treatments, leading up to that final hospitalization in which dying is acknowledged—the kind of situation Glaser and Straus looked at. No one wants to die in a hospital—we accept it as absolutely necessary for some situations, but over and over again we hear that older and dying people do NOT want to go there to die. They want to be at home. And yet we mostly do end up dying there, hooked up to the machines we said we didn’t want. In we come and out we go, for birth and for death, the gates of life in the Biomedical Empire marked “Emergency Room Entry” and “Hospital Parking Only.” The academic attention paid to hospitalized death in the 1960s went beyond sociology. Perhaps the best known public discussion came from the work of psychotherapist Elisabeth Kübler-Ross.6 In her work with dying people in hospitals, she saw a pattern, something she came to label the Five Stages of Grief. Kübler-Ross was talking specifically about the stages the dying person went through as

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they learned of, and came to terms with, their own dying: denial, anger, bargaining, depression, and acceptance. In later years these Five Stages of Grief have been adopted by bereavement counselors as applying to the survivors of a loved one’s death and have come to seem as almost necessary developmental stages. That same period of the late 1960s saw the development of the modern version of hospice: a specialized system and institution for managing the care of dying people. A British physician, Cicely Saunders,7 who began her career as a nurse, opened the first UK hospice in 1967 and more soon followed around the world. Kübler-Ross supported the concept in her own work. People seem to appreciate the idea of hospice, this plan that at the end, when medicine is over and done with its work, some lovely warm people can come in and ease the path out. Some hospice care is home based, some is in a specialized institution, and some in a devoted wing of a hospital. And although most people seem to prefer it, a recent study showed again, as has been shown repeatedly, that almost a third of dying people spend time in the intensive care unit of the hospital, and a third only get moved into hospice care a few days before dying.8 People want hospice care. But to get there, you have to accept death and that’s seen as giving up. It is noteworthy that money is made in the denial and in the bargaining stages and that the systems have developed to hold us all— the patients and the loved ones surrounding them—in those two stages as long as possible. Anger and depression

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aren’t useful for the system, and acceptance is fine if you have the hospice to move them into, but in a sense—in terms of the values of active control and fighting death, and in the financial sense as well—hospice is the opposite end of the hospital from the ICU. Hospice thus gets used at the last possible moment—or, as I have often said, if someone in your life is moved into hospice, get your funeral clothes ready quickly. Another of the responses to the way death is so badly managed in hospitals has been the movement for death with dignity. Of all the things dying people need, why focus on dignity? For one reason, because that is what institutional care removes, when one is not treated like a person but an object, a thing on a bed. But death with dignity quickly came to mean what is also called physician-assisted death, self-chosen euthanasia. Death itself then becomes not the failure of the Biomedical Empire to deliver health, but another product one can choose to consume. And what can bring more dignity in a postindustrial capitalist system than being a consumer of a carefully chosen and curated product? Why are hospitals such terrible places to die? Nobody goes into medicine or nursing because they want to be mean or to hurt people. This is so totally not about the person—I’m a sociologist, I’m talking about systems. The systems we have developed that keep the Biomedical Empire up and running effectively and productively force people to do things that are mean, that do hurt. I’ve never heard anyone talk more bitterly, with greater anger

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and grief and sadness, about the stripping of care from hospitals and other medical systems than the people working in that system, the doctors and particularly the nurses. They are the ones who actually have to mesh the individuals who are in pain, in grief, who are dying, with the smooth running of the floor. They are the ones who have to hold down a screaming dying old man to insert a urinary catheter because stopping what they are doing at random times every couple of hours to help him with the urinal takes too much time, and changing the bag on schedule is efficient, leaves them more time for doing other care services. If there were more of those nurses or fewer of those patients, if care were care, personally attentive and focused on the needs of the recipient, it would be different. And so we seek hospice care outside of the hospital. But moving outside of the hospital generally moves the services down a notch economically. Of course this is all more dramatically clear not only in the US system where billing is up front and obvious, but all over the world; whenever you save on costs, you are also cutting down on income generated. The Biomedical Empire needs sick people, dying people, consuming people. Even hospice care at home generates revenue. As one hospice nurse explained to me: As long as I’m out of a facility, I can give what the person needs without as much oversight, but even then, I am criticized for the amount of time I spend—I’m supposed to use less time and not schedule so many appointments with people whose loved ones are imminently passing. They want me

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to do more different appointments in a day and bring more people onto the program and not use my time with people who actually need it. That’s one feature of the destructive and inhuman system I work for: fee for service dying.9

The sad truth is that in most of the world, hospitals are generally tightly staffed and do not have lots and lots of extra people with lots of time for individualized, genuinely caring care. People are treated badly, hospitals function essentially like factories with people as the widgets moving through, and we go there when we have little choice. We are becoming more aware, particularly in the US just now, that bad treatment is not randomly distributed. It is better to be White than Black as a hospital patient. A lot of the discussion of differential treatments starts with the assumptions of racism, sexism, and ableism as the causes of the bad care. But what if we start not with the assumption that medicine and medical institutions provide wonderful care except for those they do not value. What if we start with the assumption that hospitals are factories, run in the interests of efficiency, and some people can, with financial or social capital, buy themselves out. The totally adorable child. The famous actress. The fabulously wealthy. Private rooms, private-duty nurses, whole private wings and wards with lots of amenities are on offer. In some countries, like the US, you just flat out buy into the better system. In others, you may have to leave your country to get those amenities. But rich enough people do not end up in shared rooms with

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strangers, their needs and care secondary to smooth systems operation. One thing the COVID-19 moment did was to make hospital care worse for everybody involved. Overcrowding, stress on the system, as well as the specific demands and concerns to reduce the spread of infection within the hospital, made the factory-like elements clear, and the caring elements less accessible. Doors were closed to loved ones and to extra hired service providers. Dying alone has been a serious problem in hospitals since the start. Can one plan on dying during visiting hours? Can one limit one’s beloved to the numbers of visitors permitted? As hard as those issues have always been, when the pandemic caused hospitals to close the doors, to not permit visitors or private-duty workers for the most part, we saw the utter tragedy of people dying in isolation. The humanity—what little humanity was left to the dying—was gone. T H E S LO W E S T D E AT H O F A L L

Nursing homes are particular locations in the land of the sick, places where one goes not for the usual medical project of becoming well again, but also not places to die. They are designed for the long limbo in between. There is not a single definition of nursing home, or how to distinguish one from a long term care facility or other similar institutions. A few years back an attempt was made to come up with a comprehensive definition,10

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and the gist of it is a residential setting where nursing care is available around the clock, with varied levels of medical management, and that these are predominantly though not exclusively designed for geriatric care, the care of the not-yet-dying elderly. Like hospitals, these homes responded to the COVID19 crisis by closing the doors. There are people in these facilities who did not, who still have not, seen family and friends for months and months. We have media images of people holding up phones, or leaning against glass doors and windows, trying to reach in as best they can. The life management services these facilities provide had to get cut down to essentials. And family, friends, and community were clearly not essential. Some are noting increases in deaths from dementia as a result of the social isolation brought on by the pandemic and our responses to it.11 In nursing home facilities, the risks of infection were understood to be greater than the fact of loneliness. Moving people into nursing homes, like any warehousing of people, increases the spread of infections. People put in close proximity in an enclosed space spread infection. That is no surprise. Parents joke about the daycare illness stage they go through, as the children first move into any kind of institutionalized daily care and the infections spread among the children and home to the families. We had to invent the word nosocomial to name the spread of infections in hospitals. It certainly came as no surprise that nursing homes were early hotbeds of infection and that residents of these homes were dispro-

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portionately represented among the infected and among those who died of COVID-19.12 Some are suggesting that what COVID-19 has shown us is that the nursing home model is itself problematic— isolating elderly people with each other is not in the interests of health and well-being. Andrew Cockburn, writing in Harper’s Magazine in September 2020, calls it “elder abuse.”13 He specifically refers to the poverty-level services in the highly tiered US, in which a for-profit nursing home industry developed mid-20th century built on the introduction of federal payments for their services. Ironically, the “socialized” nature of the services for the elderly in the US made the industrial exploitation possible.14 Cockburn points out that at least half the deaths attributed to COVID-19 across Europe were in nursing homes, and that the World Health Organization showed a strong correlation between number of nursing-home beds and COVID-19 deaths. “One might almost conclude that the death toll that has so traumatized and destabilized much of Western society in 2020 was not wrought principally by the coronavirus, but by nursing homes.”15 But what are the alternatives in a world that does not value caring? Caretaking, tending to the physical and emotional needs of vulnerable people, is about as lowpaid work as you can find. Madeleine Bunting puts it this way: “At the root of our current crisis lies the historic denigration and misunderstanding of care. Patriarchy was a system built to ensure the provision of free care. Capitalism ensured care was cheap or free.”16

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When women moved into the workplace care work, intimate caring, became “outsourced”—and cheapened.17 In institutional settings it is tightly controlled, just as the hospice nurse earlier described, how personal attention and the time to know and understand the individuals for whom one is caring are an inefficient use of time. To turn to Bunting again: Capitalism seeks to quantify and extract value, and when such disciplines are applied to the care worker, it is a tragedy. Because what is at stake is the reciprocity of human hearts, the need for comfort, and our innate human capacity to nurture wellbeing and ease suffering.18

The result in the time of COVID-19 has been thousands of deaths.

8   T H E OT H E R G AT E : B I R T H I N T H E TIME OF COVID-19

C O LO N I Z I N G B I RT H

Birth is in so many ways an ideal perspective on biomedicine as an imperial power. While so much of our understanding of imperialism is about the development of “underdeveloped” nations and regions, here we can also see it clearly laid out in terms of domains of knowledge.1 While medicine may now do some good in complicated births, it most certainly did not enter this domain with more knowledge or competence than the midwives and traditional healers whose territory medicine colonized. As medicine took over, as births moved into hospitals, maternal and fetal mortality and morbidity rose—in part, at least, for precisely the same contagion issues that COVID-19 has raised. The early understanding of simple cleanliness for surgery grew out of Semmelweis’s observation of the spread of puerperal (postpartum) fever in hospitals.2 97

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One can write entire books on the historical and contemporary medical mismanagement and misunderstandings of the physiology of labor and birth. I myself have done so.3 To name just a few of the interventions that medicine now agrees were not good ideas: using drugs that knocked the woman out and made the fetus unconscious, resulting in that classic image of the baby held upside down and smacked into consciousness; prescribing drugs that passed right through the placenta and harmed the baby, thalidomide being the most noted but far from the only; requiring the woman to assume that “patient position” of lying down when labor began rather than walking and slowly moving, using gravity and bodily adjustments to help the fetus descend into the birth canal; requiring the truly bizarre lithotomy position, flat on your back with your legs partially spread to push the baby out against gravity; routine episiotomy, cutting the vaginal opening, which actually causes rather than prevents tearing; immediate cord clamping which leaves a good portion of the newborn baby’s blood supply in the placenta and cord; believing babies did not feel pain, so doing surgeries on them without anesthesia; and separating mother and baby for hours and days following birth—the list goes on but you get the idea. In its early days, medicine as a growing profession wanted to push the midwives out in upper-class circles to make itself more acceptable to families for ongoing care. Later on, they wanted poorer people for teaching hospitals and expanded their reach. The ways that they pushed

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the midwives out varied, of course, from one country to another, but some form of vilifying the midwives and their practices, calling them primitive and uneducated, not modern and scientific, is pretty much the standard.4 But do remember that they began pushing them out before anything we would now think of as scientific was there— before asepsis, surgical technique, antibiotics, anesthesia, and notably, basic germ theory. The Biomedical Empire is still colonizing birth all over the world, as medically trained, nursing-based midwives are replacing what now get called traditional birth attendants. The US was unusual in trying to totally displace the midwives with physicians: Most countries brought midwifery under medical control. People trained in that medical model, having attended some dozens of births, are brought in to replace the traditional birth attendants who have done hundreds, perhaps thousands of births in their communities. This is how the industry part of the Empire grows, and again, that means getting people to believe that their old ways were primitive and that salvation comes with the new. T H E D E V E LO P M E N T O F T H E F E TA L PAT I E N T

The issues are far more fundamental than simple errors of management or growing the biomedical workforce. What is birth? We are back to that essential question of what is a person, what (or who) makes a person? At what

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point in the creation of a new person does that being enter the world? Biomedicine grew out of the Western Judeo-Christian heritage, in which God is the father, and people are the descendants and products of men. This is not only about patriarchy, the rule of men, but the way we define who a person is, where one comes from. The early development of science followed from this patrilineal perspective.5 One of the first uses of the microscope was to examine sperm, and in 1694 Nicolaas Hartsoeker, a Dutch scientist, drew what he thought he saw in the head of a sperm—a little person—and he used the term homunculus, Latin for “little man” to describe what he perceived. In contrast, the first description of the human ovum was by a German scientist in 1827. Through the 1700s and on into the 1800s, there were “ovists” and “spermists,” those who thought the future baby was in the ovum, and those who thought it was in the sperm. In 1875 Oscar Hertwig showed sperm heads fusing with female genetic material in sea urchins, and the idea of two genetic parents contributing equally entered our thinking. 103 years later, the first IVF (in vitro fertilization) baby was born, a baby created by doing the fusing or “fertilization” outside of the human body. Biomedical practice and beliefs about pregnancy continue to reflect these beliefs. Once the seeds of women were recognized as equal to that of men, children became half his and half hers, and the place they were planted

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had little significance. Pregnancy, seen through this perspective, hardly exists: Babies are said to arrive and enter the world, to be delivered. Pregnancy is called expecting a baby, rather than growing one. Of course women do not feel babies arrive or be delivered when they push the baby out of their body. Accessing that potential baby was a key project of biomedicine. Early use of X-rays showed fetal skeletons, and beginning in the 1920s X-rays were used for confirmation of pregnancy, diagnostic imaging for placental placement, fetal position, twins, fetal size, and other issues. There was increasing concern about the dangers of radiation, and by the mid-1970s the data were clear that radiation caused miscarriage, leukemia, and other cancers. Other imaging technologies were being developed, and the major breakthrough was ultrasound which entered obstetric practice in the late 1970s and quickly became routine. Ultrasound imaging provides a more photographic image than the X-rays did— one can see the fetal features, the face becomes recognizable, and the images can be seen in real time, the fetus watched as it moves within the pregnant woman’s body. If a fetus is a person, then who cares where you plant it? Hire someone and call it surrogacy; say the pregnant woman has no real relationship to the baby growing in her body if it comes from the seed of others. A world of biomedical services opens up focusing on what were first called “artificial” but got quickly renamed the more palatable “assisted reproductive technologies.”

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In the world of obstetrics, women are the maternal barrier between the physician and the fetal patient. And birth becomes a simple fetal extraction process. THE LABOR OF LABOR

Fetuses can simply be extracted, most obviously surgically via an abdominal incision. Calling that a Cesarean section indicates that it was known and done long before the start of biomedicine—Caesar dates to the Roman, not Biomedical, Empire. And midwives all over the world have done that when birth was failing and woman and baby were dying. Ugandan midwives were doing successful surgical interventions long before modern surgery.6 Cesarean section has gone from being extraordinarily rare, a last attempt to save lives, to being quite ordinary.7 Rates of 30% of births by C-section are typical around the world, with much higher rates in some places, as in Chile. Most babies are born vaginally, the result of the process we know as labor. It is perhaps ironic, perhaps totally reasonable that we use the word labor for that process. Is it work? There are endless debates and complex discussions among Marxist feminists about how to think of this labor and all domestic labor, all the work that was traditionally done by women and that created a workforce.8 If it is work, then the baby is the product, and others have written (Firestone perhaps most famously9) about the “tyranny of reproduction,” what it means to be the worker.

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Contemporary advanced capitalism has shifted that discussion. The production of objects is less of an issue; the provision of services more. Pregnancy and birth have become less about production and far more about consumption. Pregnant people are taught to be ever thoughtful, ever vigilant, about their consumption, from simple food management on to the services they use. And think of the array of services—not just the physician or midwife at the moment of birth. Prenatal care, ultrasounds, monitoring and testing constantly, the quality control services of prenatal testing with the potential for selective abortion, birth classes, lactation classes and consultants, and on and on. The job in pregnancy is to be a good consumer, a true Citizen Patient of the Biomedical Empire, consuming for oneself and for the future consumer one bears, the one “delivered” to you as well as from you at the birth. Giving birth, laboring, call it what you will—it is a long, hard process. One typically spends hours in labor. The early medical management isolated the woman, drugged her, and after slapping that baby into consciousness, brought her to and told her the sex and the weight of the baby she could see tomorrow. There have been decades of work, of social movements, to improve that scene, to provide women companionship and support. Pregnant people could bring companions, typically the father, to see the ultrasound, to hear the heartbeat as the pregnancy developed, to hold her hand and wipe her brow and help her through the labor and birth.

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The COVID-19 moment wiped that out. The Medical Anthropology Quarterly called this a “watershed moment for women’s rights in childbirth.”10 An analysis of birth practices across Europe and around the world found the pressure to flatten the curve, to cut back on infection risks, followed on “decades of deeply rooted structural inequality, patriarchy and neoliberal austerity measures.” The work to humanize birth—permit companionship, ensure respect and comfort—is being wiped out. Women go to prenatal appointments alone. In some places they are allowed no one with them in labor, though a lot of push-back on that has happened. A companion, the partner, or a doula (a hired birth attendant) can now be allowed in again, after those first rough months of the early COVID-19 pandemic. Pressure for inductions of labor and Caesarean sections, done just to ease institutional management, has grown. In many places the pandemic reopened the discussion of home birth. If hospitals were hotbeds of infection, why would you go there to give birth? In much of the world the Biomedical Empire has effectively wiped out the option of home birth: No one is being educated in that. In many places the size of the birth workforce isn’t big enough to have workers, midwives, or physicians go off to homes for hours and hours. Centralizing the births was so much more efficient that the numbers of birth workers had been cut down. And of course the issue of safety and risk remains front and center: Birth became a balancing of risks. Does one

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dare to risk the hospital? Does one dare to risk the home? For so long we have been taught that hospitals are the only safe place to birth, without data to support that. Birth does remain risky, most assuredly more so for some people than for others. Those countries with populations who are poor, systematically ill-treated, have higher rates of problematic births. The US is, of course, a prime example of that, with shockingly high infant and maternal morbidity and mortality for a so-called developed country. And those bad outcomes are not randomly distributed: Black women are at highest risk, and that too has been highlighted in the COVID-19 moment. B L A C K L I V E S M AT T E R , B L A C K B I RT H S M AT T E R

How Black lives enter the world really matters. —Keisha Goode11

More and more births around the world occur in hospitals. And hospitals are factories, work places, systems that need high levels of organization to run smoothly. Birth is far more variable in its presentation than maybe most of the conditions which hospitals manage. How long the labor lasts, how painful it is, how long the second stage as the baby emerges actually takes—these things vary in ways that setting a broken bone or removing an inflamed appendix do not. One is in the hospital for a long and—perhaps most unsettling—unknown period of time in labor.

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Feeling safe, feeling cared for, and being as relaxed as one can be in labor seems to be really important to make it go well. For some people, that is why they want to go to the hospital: They just feel safe. Feeling safe in hospitals is not that easy for some of us. Black women in particular have been treated so badly in so many ways by medicine. In matters pertaining to birth, this has come to be known as obstetric racism. They have had their babies taken from them for false accusations of drug use at rates that are unimaginable for White women. Black women and their babies die in those hospitals, and the women know that. Racist ideas about responsibility, intelligence, thoughtfulness, and pain sensation all influence, for the worse, the ways that Black women are treated in hospitals. What we have is in some ways a horrific self-fulfilling prophecy. Feeling unsafe makes the hospital even more unsafe. Some argue that what Black women need is more medical attention. Others have noted that personalized, trustworthy attendants help: That certainly can be a family member or a friend, but those people are also not respected in that system. A hired doula, someone trained in the hospital system, someone familiar with it, but someone who is also seen as trustworthy—in this case, particularly a Black doula—can be of enormous help in creating a safer-feeling environment. The routine rudeness or brusque behavior that can shock White and privileged people in hospitals, whether we are talking about birth or death or anything else, is

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not shocking to Black people. It does reaffirm that they are not in a safe space. A doula can run interference on that, and it is important. Some of us—me!—feel and have argued that we need more than that, we need better care. We need to decolonialize birth. We need to respect the evidence-based practice that midwifery was before biomedicine took it over. Keisha Goode asks us to bring reproductive justice into the birthplace: The best way to improve U.S. Black infant and maternal survival and wellbeing is not greater access to the dominant highly medicalized, industrialized maternity care system but, instead, greater access to Black midwives using the evidencebased midwifery model that has proven to be safer, more cost-effective and far more attentive to the psychosocial needs of Black women, Black babies and Black families.12

This is what we all need at the gates of life, at moments of pain and fear, at any moment that we hover on the edge of the land of the sick: evidence-based care, care focused not on keeping a system running let alone making it cost-effective or profitable, but care. The absence of care has been there all along, conditions under COVID19 are not a departure, just a somewhat more extreme version of business as usual at the gates of life. We don’t need a return to the usual: We need to bring the care back in.

9  THE EMPIRE STRIKES BACK

We have entrusted the Biomedical Empire with the care of our embodied selves, preventing and treating illness, injury, and damage to that body—and increasingly the mind too, the mental health issues of life. Over decades, that empire has expanded its scope, colonized our knowledge and our bodies, and become the natural-seeming, appropriate place to turn when illness strikes, when one is unwell in any way. And along came COVID-19. Pandemics, plagues as they have been called, are not new. They have been with us for all of our recorded history. Some of us have been more aware, influenced by being geographically or socially located amid recent pandemics: the SARS epidemic that hit Toronto noticeably hard and the AIDS epidemic that hit some vulnerable populations at far higher rates than others. Some of us can remember even older epidemics, or have grown up with the stories: The polio epidemic, within living memory of our older folk, 108

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brought us the March of Dimes and an ongoing appreciation of how vaccines can work. One way we think about pandemics or plagues is who to blame, notably in place-naming, like the Spanish flu of 1918. But once it’s here, once the plague is among us, the Empire is called on to fight it and needs the help of its citizens to do that. We’ve seen that who the victims are has enormous influence on how we understand and respond to a pandemic: A disease hitting hardest on little children gets a very different response than one that attacks gay men. COVID-19 hit far and wide, up and down the ages and stages of life. Its consequences varied more than its targets: notably the vulnerability of the oldest among us. Old folks as victims are less appealing than are children— I remember an ad to fight arthritis that stressed that it’s not just a disease of old people. Children can have arthritis—and that makes it important and worth fighting. Donate here. The AIDS epidemic taught people that gay men are among us, that they are in our families and in our communities. The disease outed so many closeted gay men and perhaps is the single greatest factor in changing the way homosexuality has come to be seen. We already knew that old people were here—we knew we had them in our families and in our communities. One of the consequences though of the COVID-19 pandemic has been to show us how hidden from daily view the weaker elderly actually are, locked in nursing homes of various

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sorts. That management of the elderly and their “care” in specialized, medicalized homes did not work out well— those under medical care and management died at far higher rates than those at home, than those out in the community. It is the job of an imperial power to maintain control: COVID-19 threatened and then overwhelmed the power of the Empire. The disease was the enemy, and the Em­pire, we came to see, was failing to take care of us. The Empire began to call on us: Do your duty, flatten the curve. BAT T L E G RO U N D S

What does it mean to care for people? Sometimes it’s about nurturing, giving them what they need to be healthy and strong. We use the word for the physical attention but also for the emotional care and nurturance people need. Caring is also about protection—we protect those we care for. We stand between them and dangers, evils, and threats. One of the ways we understand illness is as an external force attacking the body. That doesn’t address issues of giving birth and dying and doesn’t address a lot of normal variations in development for which people need or receive care. But thinking of diseases as alien forces has a logic and a long history. Think of the “war on cancer.” The idea of disease as the enemy takes us in two directions: One is protecting those we care for, the innocent,

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from attack, and the other is fighting back. Let’s take the fight-back first: If a disease is the enemy, then the body is the battleground. War is more than a metaphor for biomedical imperialism—it’s a real organizing force. Just as a lot of our industrialized diet comes from the military (snack bars, mac and cheese, canned food),1 so too do a lot of our medical services. Nursing was invented at the front and with it a militaristic chain of command, with doctors issuing orders and lower-level troops obeying. Much of the actual medical know-how for emergency medicine grew out of the military, but so did the militarized organization. The word triage—first manage the cases most likely to benefit from the limited services available, and only then move on to the others who might do OK on their own or not do OK no matter what—came into widespread use after World War I. The COVID-19 moment showed medicine looking at cases in terms of triage: That’s what the nonresuscitation orders were about. In any war, you have to pick your battles. The bodies where one launches a full-out attack on disease do serve as battlegrounds, and while ultimate ownership might be returned to the forces of good, a lot of damage gets done in the process. Sometimes we lose body parts—a leg, breast, kidney—to the cause. Sometimes we suffer enormously not just from the disease but from the treatment. I cannot tell you how many people I’ve talked to who think losing all your hair and being nauseated are effects of cancer; they’re not, it’s the

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treatment. Sacrificing your hair and your breast might be well worth it for another couple of decades of life. And if CPR does revive someone, well then the cracked ribs are worth it. The difficult truth is that when COVID-19 hit, medicine had no treatment. There was symptom control, keeping people alive through the attack, but no way to directly fight the disease itself. That’s the thing with a new disease. It takes time to develop a targeted response. Symptom control cuts across causes: Whatever causes high fever, respiratory problems, aches and pains, we have ways of easing the symptoms. Some of those are biomedical products, and some are traditional and will vary between ethnic communities. From Jewish chicken soup to Chinese big pot soup, we offer what we can. But we know it’s not enough. We want a cure, and we want the prevention a vaccine can offer. But the Empire did not have either. What it did have was hospitals. IN THE TRENCHES

I spoke earlier of the patient in the hospital as a “widget,” a thing a factory produces. But actually, it’s a little more complicated, and a lot worse, than that. The patient isn’t the product. The patient is the location on which a battle is being fought. We saw that most clearly in obstetrics, where the fetus is understood as the patient, and the pregnant person as the “maternal barrier.” But what about cardiac cases? The heart is the object of attention, and the

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rest of the patient is the barrier—hence the absolute joy of the first successful open heart surgeries. Procedures that could have been done on cadavers to repair faults in the heart can now be done on living people, and the people can survive. This is, surely, a wonderful thing and I am not arguing with that—it is very much part of the good medicine does. But what does it mean to be the location, the barrier, to the service provided? What does it mean to be the battleground? Again, let’s look at that word care. We talk about hospital care. Think about what you would do—the care you would give, the care you would take in giving care—if someone you care about is sick. Picture yourself—you’re in their home, maybe it’s your shared home, maybe you came by especially to help. They’re miserable. Hurting or feverish or having trouble breathing—they’re sick. Would you be making a lot of noise? Like, say, running a hospital-quality announcement system alongside of overloud speaker sound escaping a headset right next to them? Would you set up beeping machines around them? Probably not. Go into a hospital and hear all the system noises and people in the next bed with their own television and the speakers, even if they are headphones, barely the now-requisite six feet apart to stop the spread of infections from the sick person you are caring for. Would you wake them every few hours to check on them even if that’s the first time they’ve managed to fall asleep in hours or all day? Like a hospital does with regular checkups totally unrelated to sleep needs of the sick person.

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What would you feed them? Hospital food has become something of a joke in America, perhaps pointedly so with our wide mix of cultural backgrounds. Sick people tend to want familiar foods. Wouldn’t you think—or ask if necessary—about special foods from their childhood, things they eat that make them smile, familiar aromas? Look at a hospital food tray. No, don’t. It’s too depressing. Yes, there are wonderful people—I know and admire at least one— who work really hard to produce culturally appropriate food and to address individual as well as cultural dietary variations. But. Mostly? If you’re a typical patient, not someone very rich and able to buy into one of those specialty care places—you’ll be looking at food that does not give comfort, that does not speak to who you are at all. There is very little that is done in hospitals that even tries to replicate what we know as caring for a sick person. No quiet, no comfort, no personal touches, no anything really that recognizes the differences between patients as different people with different backgrounds and different needs. People who do know that person, who can really try to make them a bit more comfortable, people who (yeah, a lot of us have done this) smuggle in appealing food—those folks are allowed in for “visiting” hours. You’re not there for caregiving hours, you’re there to visit. It’s not what it feels like. You get there and you try to make them comfortable, you try to take care of them. And then visiting hours are over and out you go. COVID-19 made this worse, unimaginably worse. Visitors were not always allowed in, and if they were, it was

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for severely restricted hours, and usually just one person. The kind of comfort that you might get from your lover, your parent, your child, your spouse, or your several very different friends—you would only get one and feel lucky to have that. Visitors were not deemed essential. And the caregiving—along with the patient advocacy— that so-called visitors do was made invisible. Or viewed as interference. I am not saying there wasn’t good reason to do that closure—hospitals are hotbeds of infection transmission. Locking down the hospital as much as you can surely makes as much sense as closing bars or bowling alleys. The opportunity for transmission is bad enough when workers go in and out, so closing the doors to the nonessential people makes a kind of sense. But the consequences were horrific—people suffering alone. A third of people put on ventilators for COVID19—a third of those who survived—report symptoms of PTSD, posttraumatic stress disorder, according to a study of over 1,300 patients in the United Kingdom.2 Among those who were hospitalized but not on a ventilator, that number dropped, but was still one in five. Flashbacks of the ICU and the medical providers in their protective garb were common. It makes sense—we are, definitionally, not at our best, not doing our most mature thinking when we are sick. The scene we are presented with from the vantage point of an ICU bed is much like something out of a horror movie, people unrecognizable, truly alien, doing frightening and painful things to our patient bodies.

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W I N N I N G BAT T L E S A N D LO S I N G W A R S ?

All of this—from bad food and lack of sleep to PTSD— might well be worth it if the battle is won. Nations too have sacrificed battlefields for the larger victory. The more fundamental problems emerge when the patient and the Empire do not agree on the common enemy, and also when the cause is lost. One of the more common examples of the patient and the Empire disagreeing on the enemy comes up with mental illness: The diagnosis rather erases the patient’s power to name their own condition. Sometimes the state steps in to mediate: Is this person addicted? Is this psychiatric condition worthy of hospitalization against the will of the individual? In other cases, the disagreement is over who has actual decision-making powers—that is particularly clear in pregnancy, birth, and childhood, in which the Empire takes over legal custody from the pregnant person or the parents of the born child if they convince the judicial system that the parent is not making decisions the Empire approves of.3 Sometimes the disagreement is on whether the treatment, the battle itself, is worth fighting: Does one want to survive this particular battle with its attendant costs? And sometimes the patient is claiming that something is not right, that they are sick, that there is a battle to be waged, and the medical personnel run their tests and say no, you’re fine. We have seen the consequences of that— dramatically, of late, in the issues of race and gender:

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Cases in which women, world famous tennis stars,4 women who themselves are doctors,5 are told they’re fine. And they are not. In most of these cases all the usual suspect categories come into play: The more the patient is like the traditional doctor, upper-class educated white male, neither very young nor very old, the more likely the patient’s view of things will prevail. The general understanding of hospitalization for any condition is that it is erring on the safe side. This was certainly what those of us who have been arguing for more home births face—“But what if something goes wrong?” The assumption is that if you are at home, something can go wrong, and if you are in the hospital, they will fix it. As stated earlier in this book and more times than I can count now in my life, that’s not what the data show. Things are more likely to go wrong if you are in that hospital to start with, and if you are at home or in a birth center and do need the specialty services of the hospital, an educated midwife can provide emergency services while you transfer in. Going into the hospital—for anything, for any procedure or condition—is not a risk-free decision. Nicholas Christakis, himself a physician, elaborates on this point. “Possibly as many as 1 percent of patients admitted to American hospitals die from a medical mistake!” he claims—and rather charmingly includes that exclamation point as if to indicate surprise, but then in the next sentence says “Doctors know this” and quotes one of his own senior doctors from his internship: “Hospital admission is

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not a benign procedure.”6 And that is, as I pointed out earlier, only the mistakes. That does not include the known risks of dying from a procedure or a treatment—it is only the risk of dying from an error. Think about that— there is a room of 99 people and one of them is going to die from an error. Do you err on the safe side by walking into the room and becoming the 100th? The whole logic of more treatment, more admissions, more management as being “the safe side” is undercut by the data. Again from Christakis, doctors strikes are rare but an analysis of five strikes by physicians around the world between 1976 and 2013, strikes lasting nine days to as long as 17 weeks, showed that “mortality either stayed the same or declined during the strike.”7 In a more specific example, one he finds “extraordinarily demoralizing,” cardiac mortality drops when cardiologists are off at national cardiology conferences.8 It is perhaps the interventionist strategies of the cardiologists that cause the deaths. It is an issue that some of us are now thinking about in obstetric care—since the pandemic, the rate of premature births has dropped. Is it that somehow being at home, furloughed from work or working at home, is easier on pregnant women? The rest of us, women in particular, don’t seem to have found this pandemic all that relaxing. Or is it that the slowdown in obstetric visits has slowed down the prematurity rates? It will be a very long time before we can sort the data on the costs or benefits of closing down nonessential medical visits and hospital admissions. Some worry about

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the loss of early intervention procedures for things ranging from cancers to obesity; some think this might work like a grand-scale physician strike, resulting in lower mortality. Given the increase in deaths due to the COVID-19 virus, it really is going to take some time to analyze this data. What we do know is that the way the Biomedical Empire fights disease, by treatments, procedures, drugs, and hospitalizations, is not without its costs. Some of those costs are, of course, economic and perhaps best understood as benefits for the Empire—while too many of any particular type of illness at once cuts into profit, a steadier, more constant supply of sick people is the basis for the economic stability of the Empire. Those costs are also physical, the sickness and deaths that the medical procedures themselves produce; and psychological, trauma at the level of diagnosable PTSD or the more ordinary trauma, grief and the stress of hospitalization for oneself and for one’s loved ones. When there is no cure at hand, those costs are there for all to see.

10  LESSONS LEARNED

There must be a way to put both health and care back into health care. Biomedicine is a strong imperial power. But it’s not the only power in the world. Much effort has gone into trying to put the care back in, to take people outside of the efficiency of the hospital and into a more humanized care. It’s seen as expensive. Maybe it is. But the hospital isn’t cheap. What if some of the money that is poured into long and useless hospitalizations were spent on family leave? Home birth with back-up medical services as needed can be far cheaper than putting everyone into hospitals. Hospice care can be cheaper than horrific, isolating, and pointless ICU stays. People in places like Finland and Canada regularly try to tell me that unlike the US they have free care. But it’s not free. It’s tax money going to the Biomedical Empire. Money that could be spent on home care, on caring care. We are, even in the midst of globalization, still a world made up of separate nation-states, each exercising some 120

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power and control. We are a world of individuals, but also of families, of communities, of cultural, religious, ethnic groups. We can divide ourselves up or group ourselves together in so many different ways. And so it is that the response to, and consequences of, COVID-19 are not the same all over the world. Some of the variation is almost amusingly culturally specific. Consider fresh air as a preventative and as a healing measure. Outdoor dining is OK, inside not. And when inside, how crowded? A percentage of capacity is being used, but think about the crowding levels of different restaurants you’ve been in. There’s a lot of conversation happening on that, and what feels crowded to someone in a rural area is not the same as crowding to a New Yorker or a Parisian. And remember my thought early on, that people who lay outside for the flu of 1918 did better than those inside. Is fresh air healing? I remember working in the Charité Virchow hospital in Berlin and taking such joy walking through the grounds and seeing people in hospital gowns, with IVs in their arms, sitting on benches outside, people clearly recently out of surgery taken out in their wheelchairs, others walking slowly leaning on the arms of ­family members or attendants. Fresh air was considered healing in Germany—and is now being urged as a way of keeping COVID-19 infections down.1 And then consider the US—if you ever manage to open a window in a hospital, do let me know. But maybe even crazier—consider this case. A physician in Missouri had a patient who did

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not want to go into the hospital with his gangrenous toe. He was afraid of getting COVID-19. So the doctor amputated the toe on the front porch of his office, and said, “Everything was absolutely perfectly sterile, out in the bright sunshine and fresh air.” Not only did he lose his license, but somehow, doing an outdoor amputation outside of the sanctified if hotly infected space of the hospital was seen as absurd enough to make it into a Harper’s Magazine’s weekly review.2 Some of the variation is linked to other culturally specific medical approaches: China is using traditional Chinese medicine along with the more standardized approaches, things that have shown themselves to be good treatments of symptoms presented in COVID-19. The WHO has removed a warning it had not to use herbal remedies from the what not to do list on its website, after first removing that from the Chinese language version.3 But clearly something bigger than an open window or herbal soup is happening that explains the enormous variation in transmission and in deaths among those who do become infected. In some places the military was used to fight the virus—soldiers were deployed to bring food and necessities to people in places that were on lockdown, or to keep people in lockdown even though they didn’t have food. Sometimes police were used for those things and also to enforce mask-wearing and quarantines. That’s national, regional, and local force deployed to fight the virus entirely outside of the Biomedical Empire’s realm.

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The death rates have varied so enormously. The data aren’t all in, the pandemic hasn’t played out yet, but the differences aren’t random, and maybe we can learn something from them. In a thoughtful discussion on the BBC looking at these differences, the conclusion seemed to be that it wasn’t authoritarianism versus democracy, but a working government: National or local governments that took better care of their people had better outcomes.4 And care in this sense wasn’t about more checkups and diagnoses. It was about what we sometimes call standard of living. A better standard of living protects people from dying of COVID-19. What can we—as citizens of the Biomedical Empire— learn from this pandemic? How can we move forward to a better way? We don’t want to lose the good medicine does—what we value in science, in progress. The COVID-19 vaccine typifies that good. They’ve come up with a vaccine faster than a treatment—if you get sick no pill or shot makes it go away, but two preventative shots can keep it away. For that, medicine has to treat the well, the healthy—and that requires a different kind of trust than putting your sick self or loved one under medical management. Our past experiences, as people, as communities, as racialized groups, with the Empire affect how we feel about submitting our healthy selves—and maybe especially our healthy children—to medical treatments. And so the vaccine itself exposed some resistance to the Empire. But a virus spreading around the world also exposed how health, actual strong, healthy resilient bodies, is not

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randomly distributed but very much a product of a social world. Aging and vulnerability seem to be inevitable— old people, people nearing the end of their lives, are more vulnerable everywhere. Any virus, any illness, any accident, seems to have greater negative consequences for old people than young. A kid with the flu, that ordinary old flu we’re so used to, versus an old person with that flu— we expect and likely see very different expected outcomes. But so too when a kid falls down the stairs and when an old person does. Physical vulnerability with aging is inevitable. It is a lot less obvious in our physiology why people of color die at higher rates—melanin doesn’t cause lung problems. But racism does. Wherever people are disvalued, badly treated, and living in poverty conditions, they are physically more vulnerable. Environmental racism exacerbates that vulnerability, placing some groups more squarely in the path of environmental hazards. Poverty— generation after generation of it—has its costs. We see some of this difference when we compare death rates between countries or between neighborhoods in the same city. The wealthier are doing better. What would it take to bring the public and the health back into public health? And what have we learned—or failed to learn—about care? So many of us have been, all of a sudden, the widget in the factory, our bodies becoming the isolated work sites, whether we were sick and dying or healthy and birthing, when we needed care and love. Is it possible to

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put the care back into medical care? Let’s explore that too as a lesson we can learn. VA C C I N E S : T H E L I G H T AT T H E E N D O F THE TUNNEL?*

The first response in the US to the start of the COVID19 pandemic wasn’t a lockdown or quarantine, but to give a jolt to vaccine development by reducing regulatory barriers on vaccine development. Vaccines have been among the most successful of all biomedical interventions and are credited with the elimination of polio in the Americas, the global eradication of smallpox, and the overall decrease in mortality and morbidity from vaccine preventable diseases (VPDs).5 Vaccines themselves are portrayed and understood as the first, most powerful line of defense against these fatal and now preventable diseases that still kill millions a year. Depending on the nation, a child will receive vaccines for about 9 to 14 different diseases in its first few years of life (spread over many more shots since immunization for certain diseases requires boosters), with Western European children often receiving more.6 A regular schedule of vaccinations is a central part of starting one’s life as a Citizen Patient. How did this happen? Our usual explanation about the development of medicine is that first someone did *Coauthor, Alec Cali

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some science and from that we plucked a cure. A good example of that model is penicillin. Working in a lab, researchers thought it seemed odd and noteworthy that the bacteria did not grow on that one contaminated dish and . . . ta-da! Antibiotics. But some medicine is colonized, taken from others and incorporated into medicine as a discovery, just as land that was always there, with people on it, got “discovered.” It was common knowledge that people who had smallpox were immune to later exposure, and inoculation, deliberately inserting a small amount of the pus from a person with smallpox into the skin of a healthy person, could save them later from having a serious attack of smallpox.7 This knowledge appears to trace back to Africa, China, and India long before being introduced to Europe in the 1700s. In the late 1700s English doctor Edward Jenner noted that it was also common local knowledge that milkmaids who had had cowpox, a much milder disease, did not get smallpox. And thus Jenner is given credit for “discovering” vaccinations, dubbing them with a name derived from the Latin word for cow, vacca, and publishing the finding in 1798.8 By the 1860s vaccination was required in some places for poor people to get social services and vaccination began to link medicine with governmental control.9 By the late 1800s vaccines were available for cholera, tetanus, typhoid fever, and rabies, and by the early 1900s, tuberculosis, diphtheria, and pertussis joined the VPDs. All of these were understood as primarily diseases of poor people, and vaccination campaigns focused on reducing

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deaths in poverty-stricken areas and among troops.10,11 Rather than being seen as a result of poor sanitation, these diseases were often seen as brought about by the careless behavior of poor people. Eliminating these diseases was discussed primarily in contexts of limiting troop deaths and “improving” the slums, largely to prevent the spread of disease to the affluent. It was not until the polio epidemic of the mid-20th century, with its powerful impact on the children of the wealthy, that vaccination research and campaigns gained upper-class support. Polio was a disease that affected children and seemed to have an even greater impact on wealthy children, perhaps because of less regular exposure and thus less immunity. Waves of polio pandemics swept through the world, killing some people, leaving some in iron lungs (full body breathing support), leaving others—like Franklin Delano Roosevelt—relatively healthy but unable to walk. In the stigmatizing language of the era, they were “cripples.” Observation leading to a medical intervention is one path, the path the smallpox vaccine took; another path is hiring people to set out and find a vaccine. That was the path that led to the eradication of polio. Roosevelt called for people to send in donations and to join together to find a vaccine. This became the March of Dimes and led to Salk’s vaccine discovery, and its distribution in 1955. But as in every other area of spreading biomedicine, the umbrella widened. Measles is sometimes fatal. Rubella (German measles) can cause serious birth defects if pregnant women contract it. Mumps can cause infertility in

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exposed boys. The chicken pox vaccination, on the other hand, was not introduced as life-saving, but as moneysaving. The costs of parental leave for the care of a sick child was greater than the costs of vaccinating.12 As more and more vaccines were being pushed earlier and earlier in life, understandably, some parents, acting as patient advocates for their children, came to question the widespread use of vaccines. Questioning vaccines in particular traces back to the demonstrably false claim, from a later retracted study, that the MMR (measles, mumps, and rubella) vaccine was linked to autism.13 A number of celebrities joined into what became known as the anti-vax movement. Lines were drawn in the sand; those expressing concerns about vaccines are placed under the label of anti-vaxxer: a vaccine denier, someone not intelligent enough to understand the science. Parents holding these concerns are seen as recklessly endangering their own and other children. Despite 5% to 10% of the adult population holding strong antivaccine beliefs, fewer than 3% of children are completely unvaccinated.14,15 Many parents want to space out the shots, or refuse some vaccines and accept others. Yet questioning of any of the vaccines, any concern about introducing so many attacks, however controlled, on a developing immune system, is labeled as a kind of ­heresy. Many of the parents who object to particular vaccines or to the clustered schedule, are wealthy, educated people who feel that supporting health is a better response—cleanliness, fresh air, good diet. Rather than

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call them all ­anti-vaxxers, academic and policy discussions have—in a bow to their class privilege one might argue— developed the term “vaccine-hesitancy” to describe the range of opinions.16 And it is in this context that the light we are being offered at the end of the COVID-19 tunnel has been less than totally alluring for many. Can we trust this vaccine? Which country or which company has developed it, who was it being tested on, will we be required to take it ourselves and to have our children vaccinated? Of course, those of us who live in countries that are less effectively protecting our health, nations which have more thoroughly sold out to the Biomedical Empire, are more worried about the possible dangers of vaccines. Vaccine hesitancy interacts with the changes to public health priorities, the hollowed out regulatory system, the increasing strength of pharmaceutical companies, and the corresponding distrust of the government.17 Considerable attention, again in the United States context, was paid in the media to the distrust of medical authority by people of color, in particular Black people. The Tuskegee Experiment, the horrific, unethical research done on Black men with syphilis, as well as the repeated cases of contemporary anti-Black racism in medicine, came up in news reports regularly. In a grand show of not-to-worry, the very first vaccine shot in the United States was given by a Black person to a Black person. And so in the United States we have a rather odd alliance in the rejection of vaccinations—the most elite and

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valued people on the one hand, and the most disvalued on the other. But the roll-out has begun, and as will surprise no one, the richest countries and the richest people within them have early access, and the poorest have to wait longest. The obvious high death rate from COVID-19 among old people has made age a strong factor in access in places where vaccines are available. But other factors are hotly debated. Prisoners, who have no way to maintain social distancing, and who are among those most affected (four of the biggest outbreaks in any type of location in the US, and 30 of the top 50 outbreaks as of May of 202018) are receiving the vaccine in some states but not in others, even while their guards and lawyers are being prioritized. The grand international alliance that is the Biomedical Empire is perhaps at its best in the creation of vaccines—a genuine international effort, heavily subsidized by governments and thus taxpayers, and so there is some attempt not to turn it entirely into a profit-based enterprise. But once the vaccine was created, its distribution mirrors the usual race/class/power distribution of the world. Stories of wealthy people popping in and taking vaccines intended for poorer, higher risk populations have entered the conversation, a specific kind of medical tourism. Other wealthy people can remain vaccine hesitant, can afford to continue their serviced lockdown, and inhabit their bubbles of relative safety. For most of the world’s people, the light at the end of the tunnel is a very long way off.

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P U T T I N G H E A LT H B A C K I N P U B L I C H E A LT H

We citizens of the Biomedical Empire credit medicine with so much—much more than it has actually accomplished. It’s almost fun, in a weird way, to draw a timeline of disease on the board in a classroom. I draw out the decline in death rates over the 20th century, from around 1900 to 1980, from infectious disease—that long ski slope down for measles, scarlet fever, tuberculosis, and typhoid. And then I go back and put an arrow at the point, right near the bottom of each slope, as things are leveling off, when the relevant medical intervention came along, be it the vaccine or the drug, such as penicillin, which we credit as saving our lives. The cavalry arrives just after the nick of time. We save lives from infectious disease with those drugs once in a while, sure. But mostly we save lives with the public health measures that keep people healthy, resilient, and able to withstand exposure or the disease itself.19 Poverty sucks. Poverty drains the life out of people. Poverty can exist at the level of an entire nation, or poverty can exist in the income inequality, the income despair-ity, we see in places like New York with the richest and the poorest people living side by side and worlds apart. People who are well nourished before they are born, people who have clean air and water, who have space to move and to breathe, have what it takes to fight off an illness. They are armed.

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We could do what we are doing and focus on expanding medical treatments, or we could focus on expanding health. Consider again the example of Chile—we could make sure that everyone has access to diabetes medications, and we could fund more research on more treatments. Or we could move away from the industrialized diet which we know causes the diabetes. We could treat people—or we could feed them. A healthy diet—like clean air, fresh water, all of what makes a healthy environment—is not available for poor people. This is both the shortest, most straightforward of lessons we can learn, and probably the hardest to implement. We need a more egalitarian world. We need to move beyond racism, beyond all of the forces that maintain inequality. We have the resources to feed, clothe, and house the world. We are not doing it. The COVID-19 pandemic made that all too apparent. PUTTING THE CARE BACK: DEFUND THE H O S P I TA L S ?

Just as I felt the need to start this book with an open and heartfelt acknowledgment of the good medicine does, I feel now as if I need to say, “Some of my best friends are doctors and nurses.” And it’s true. I am offering a critique, a deep and stinging critique, of how people are treated when they are patients, and most especially when that becomes their dominant identity, when they are hospitalized. Those people, the doctors and nurses and the

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others working in that system, routinely do evil and unacceptable things to people. It’s built into the system. Some of this comes out of my own experiences for my own few relatively minor hospitalizations, and some from the longer, more intense and exhausting hospitalizations of loved ones. And some of it comes out of a career in medical sociology, reading study after study. Bad treatment is well documented in the literature, in the sociology of medicine, and in popular literature as well. I have watched people being demeaned, dismissed, sometimes what totally looks like tortured, for no reason other than to maintain the efficient running of the institution. I have tried to intervene and suffered the consequences. My stories are not unique—whenever I start talking about this with others, they chime in with similar tales. For those of you reading this who are perhaps young enough (and lucky enough) not to have been put in this position, let me give you a couple of examples to clarify. I woke up from surgery on my leg. I had specifically asked not to have general anesthesia, and they agreed, my ankle could be fully anesthetized while I was conscious. But when I asked a question during the surgery—politely!— they had a drill and knives at my leg after all—they then knocked me out. No discussion, no reason—they just didn’t need me there as a social being. I listened to my father-in-law when he was dying, held down against his will having a feeding tube inserted. I stood outside the door listening to his screaming, “No, stop!” . . . and then his voice silenced and I just heard

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grunts. I regret that I didn’t intervene or try to—I naively thought they must have known what they were doing. My mother-in-law talked to us about it; at one point, when I wasn’t home, she left a message on our answering machine about how she’d never want a feeding tube. I had the brains to save that message. A year or so later, she was in the hospital and, yes, she was dying, and yes, they wanted to put in a feeding tube. I went and spoke to whomever I could find and was ignored. I wrote down on a piece of paper, in big letters “I DO NOT WANT A FEEDING TUBE” and held it up for her to sign, which she did, as best she could, on her back, pen in the air, a gentle smile on her face. I took it around to the administrators for her case—and was asked, no, was told: “Oh, you never liked your mother-in-law?” I could go on—most of us could. Being ignored, being pushed into schedules that don’t match our bodily needs, dignity denied, autonomy lost; it’s ordinary. I am White. I have a PhD, not a “real” doctor in their world but worth a point perhaps. I am middle class. I never walk into a hospital without dressing appropriately. Early on a fellow sociology doctoral student told a story of going into the hospital for her first birth, in her early 20s, hair needing to have the roots touched up, fingers too swollen for her wedding ring, wearing an old shirt of her husband’s because she’d outgrown most of her maternity clothes. She was left on a stretcher in a hallway. She turned to her husband and said, “Mike, get me out of here.” They snuck off unnoticed, left the hospital, went to a Woolworth’s

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store where she bought a cheap plain ring and put it on her wedding-ring finger, stopped home, and while still having contractions shoved herself into her best fancydress maternity outfit, touched up her hair, and went back—right to a nice room and respectful treatment. I remember that whenever I go into a hospital as patient if I have the time to get dressed for it, but certainly as a visitor or what we really are as visitors—patient advocates. I dress like I was going for a job interview. Imagine what this situation is for people who are Black. For people with disabilities. For any stigmatized individual. White Americans are starting to learn how much Black patients are being ignored, needs not met, not listened to. It happens more often with fewer resources— you can’t after all slip out like my friend did and turn yourself White for the next few hours. It’s increasingly obvious that Black people are treated worse than White people in hospitals, but that is such a low bar, it should not be aspirational. You do not want anyone to be treated like a non-elite White hospital patient. Hospitals are complicated systems that have to be run, and patients are moved through that system. Again, this is very different than what we think of as care. But defunding the hospitals is like defunding the police— you need to put something in its place. We went down this path in the United States with regard to mental hospitals. In the mid-20th century, the long-term facilities for people with mental illnesses and for people with severe intellectual impairments were horrible. Then there

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was a movement to “deinstitutionalize.”20 The mental hospitals were closed—and nothing was put in their place. Homelessness, suicides, and addiction followed. And more recently we moved toward shorter hospital stays postbirth—what were disparagingly called “drivethru deliveries.” The data are clear—it is not safe to keep newborns in close quarters exposed to infections. It is not safe for the mothers either. It is safer to go home. But what was there in place of those few postpartum days in the hospital? Lots of people having babies have never even seen a day-old baby before. They went home to take care of one. They and their partners had never seen anyone one-day postpartum: How much bleeding is normal? How much breast swelling? We used to have families and communities that took care of newborns and their mothers. But that knowledge was lost, was colonized. The monopoly that medicine claimed on birth was what Illich calls a “radical monopoly”21—not just cornering a market, but disabling people from doing things on their own. I remember when my first home-birth baby was a couple of days old, my mother and mother-in-law trying to help, the surprise and laughter when milk dribbled out of the baby’s mouth. Look! Oh my! They had never seen human milk before, had given birth in those mid-century hospitals where suckling was all but impossible. And the umbilical cord? They hadn’t seen one of those either— they were allowed to hold their diapered babies occasionally, but by the time they were sent home, the cord had separated.

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We managed, we figured it out. But we were healthy and strong and living comfortably. For some things hospitals are necessary; the centralization of equipment and personnel makes total sense. But we could cut that to a minimum. And we could make those spaces more amenable to care. Think about the typical hospital room—where else are adults expected to sleep right next to total strangers? Hospitals, prisons, barracks. Smaller separate rooms with shared bathrooms, we could make that work. In many countries those private rooms are available for people with money to pay for them. And we could expand visiting hours. Some hospitals have opened 24-hour visiting for parents of young children—and really it’s not visiting, but caregiving. We could open that up for adults too. We could think longer and harder about moving more care back into the community, restoring community healers, helpers, and caregivers. Doctors used to make house calls and care for families over the life course. The corporatization of medicine largely ended that; it’s not an efficient use of doctors’ time. The pandemic could bring care back into the community—but the pressure is to turn to telemedicine, exchange data, and not establish a relationship. Community-based care has enormous appeal for many people and would be lifesaving. Hospital admission is not, as noted, benign, given the errors, the infections transmitted, and the psychological trauma. But the things that people used to go to their local doctor for have often been moved

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into urgent care centers or left to the hospital ER. When your child has a broken finger or grandma is getting bedsores, these could be better treated by a local doctor or community-based provider with whom people could develop long-term, caring relationships. Think of that man with the gangrenous toe who had his doctor friend do the amputation on the office front porch rather than go into the hospital. So much of what we now find in centralized care could be dealt with more safely at home or nearby. And that provider need not be part of the medical system, nor under orders from administrators, but a genuine part of the community. This knowledge was colonized and lost—we can regain it, and we can share it. We can learn again how to take care of ourselves and each other. Right now, imagine this: Two children are on their way to school and see a bird on the ground struggling with a broken wing. One stops, picks up the bird, runs home, calls their parents, and says, “You have to help me, you can’t go to work today!” The other child says, “Ooh, that’s sad, but I have an important math test today,” and goes on to school. Which one is going to get into medical school? Some of medicine absolutely is about science, that nerdy stuff, and we need some kids to devote themselves to that, so that medicine can do good. But we need to value that other kid too, the one who cares, who wants to help. We do have other models, and that is one reason I ask you to think about the gates of life. There is the home birth movement with midwives successfully bringing birth home with appropriate care and access to emergency services as needed. There is a hospice movement, successfully

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bringing dying back home. Other healing, recovery from surgeries, long-term illnesses, and yes, aging, could be brought home. Given what we have learned about nursing homes for the aged, the real estate section of newspapers are starting to show us backyard houses for Grandma. But who has a backyard, who has the money, the time, all that is needed to provide the care? If we want to provide care, we have to pay for it, one way or the other. Care is costly—it’s exhausting, it’s time consuming. People with good jobs cannot afford to leave those jobs to provide the care, so we see what Arlie Russell Hochschild called “the outsourced self ”22—hiring cheap labor to do the caregiving. Care by strangers, in much of the world, is the poorly paid work of disvalued people, typically women of color. Caregiving by family is largely part of the unpaid labor of women, something the pandemic is also clarifying. It is women losing their jobs as they need to provide childcare. And home caregivers for sick and elderly people aren’t even acknowledged as “essential workers” in the vaccine priority list.23 If we want to restore care, we are going to have to move beyond the Biomedical Empire. And like restoring public health, it means putting people before profits. And like restoring public health—it doesn’t appear to be the direction the world is moving. We could learn from this COVID-19 pandemic, we could make the changes, really make a revolution. And that’s pretty much what it would take—overthrowing the Biomedical Empire and the power it exerts over all of us.

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NOTES

CHAPTER 1

1. Concept introduced by Nikolas Rose and recently expanded in Kelly E. Happe, Jenell Johnson, and Marina Levina, eds., Bio-Citizenship: The Politics of Bodies, Governance, and Power (New York: New York University Press, 2008). 2.  Barbara Ehrenreich and John Ehrenreich, “The Medical Industrial Complex,” Bulletin of the Health Policy Advisory Center (Health-PAC Digital Archive, November, 1969); Arthur S. Relman, “The New Medical-Industrial Complex,” New England Journal of Medicine 303 (1980): 963–970. 3.  With much appreciation to conversations with my colleague Alan Petersen. 4.  Howard Waitzkin and Rebeca Jasso-Aguilar, “Empire, Health, and Health Care: Perspectives at the End of Empire as We Have Known It,” Annual Review of Sociology 41 (2015): 271–290, 272. 5.  Jonas Salk, TV Interview with Edward R. Murrow, April 12, 1955. 6.  Barbara Katz Rothman, “In Which a Sensible Woman Persuades Her Doctor, Her Family, and Her Friends to Help 141

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Her Give Birth at Home,” Ms. Magazine, December 1976: 25–32. 7.  Ivan Illich, Deschooling Society (New York: Harper & Row, 1976). 8.  Finn Bowring, private communication. 9.  Bernice L. Hausman, Anti/Vax: Reframing the Vaccination Controversy (Ithaca and London: Cornell University Press, 2019). 10. Timothy Snyder, Our Malady (New York: Crown, 2020), 123.

CHAPTER 2

1.  Peter Conrad, The Medicalization of Society (Baltimore: The John Hopkins University Press, 2007). 2.  Lynn Payer, Disease-Mongers (New York: John Wiley and Sons, 1992). Payer introduced the term disease mongering while looking at how halitosis was introduced as a disease by the Listerine company. 3.  David Armstrong, “The Rise of Surveillance Medicine,” Sociology of Health and Illness 17, no. 3 (1995): 393–404. 4.  Adele E. Clarke et al., “Biomedicalization: Technoscientific Transformations of Health: Illness and US Biomedicine,” American Sociological Review 68, no. 2 (2003): 161–194. 5.  Ulrich Beck, Risk Society (London: Sage Publications, 1992). 6.  Anthony Giddens, Consequences of Modernity (Stanford, CA: Stanford University Press, 1990). 7.  Peter Conrad and Kristin K. Barker, “The Social Construction of Illness: Key Insights and Policy Implications,” Journal of Health and Social Behavior 51 Suppl (2010): S67–S79. 8.  Irving Kenneth Zola, “Medicine as an Institution of Social Control,” Sociological Review 20, no. 4 (1972): 487–504.

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9.  Ivan Illich, Medical Nemesis (New York: Pantheon Books, 1976). 10.  This is the point that Illich drew attention to in Medical Nemesis. 11.  Gayle A. Sulik, Pink Ribbon Blues (New York: Oxford University Press, 2010); Barbara Ehrenreich, “Welcome to Cancerland: A Mammogram Leads to a Cult of Pink Kitsch,” Harper’s Magazine, November 2001, 43–53. 12.  Wendy Simonds, Hospital Land USA (New York: Routledge, 2016), 11.

CHAPTER 3

1.  Barbara Katz Rothman, “Our Day Jobs: Politics and Pedagogy in Academia,” Sociological Forum 31, no. 1 (2016). 2.  I would like to say that Alan Petersen and I coined the term biomedical imperialism, developing it in our work together on the issue. It clearly grows out of the work of Irving Kenneth Zola on “medical imperialism” and the ways that medicine as an institution expanded its area of control. Robert Dingwall used the term in an article addressing ways that biomedical models were influencing social science research and publication ethics (“Publication Ethics and Biomedical Imperialism,” Social Science Space, 2014, accessed October 13, 2020, https:// www.socialsciencespace.com/2014/03/publication-ethics-andbiomedical-imperialism/). Zachary M. Schrag’s powerful 2010 book Ethical Imperialism (Baltimore: The Johns Hopkins University Press, 2010) expanded on this. The imperialism and specific imperial power that both Dingwall and Schrag refer to is that of biomedicine. Questions of ethics become bioethics, and the model for protecting research subjects becomes the model used in clinical medicine, which is narrowly and individually focused. Questions that might once have been grounded in

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philosophy or in religion are instead grounded in biomedicine. David Baranov also wrote of biomedical imperialism (The African Transformation of Western Medicine and the Dynamics of Global Cultural Exchange [Philadelphia: Temple University Press, 2010]), focusing on the exporting of Western medicine to Africa and the Caribbean. It is the Western-ness of biomedicine that connects to its imperialism, the implicit colonization of other parts of the world by Western power. 3.  Michel Foucault, The History of Sexuality (New York: Vintage Books 1990 [1976]), 140. 4.  Karl Marx and Friedrich Engels, The Communist Manifesto (London: Pluto Press, 2017 [1848]). 5.  Giorgio Agamben, Homo Sacer (Stanford, CA: Stanford University Press, 1998). 6.  Michel Foucault, The History of Sexuality, vol. 1, translated by R. Hurley (London: Penguin, 1978 [1963]).

CHAPTER 4

1.  Peter Grant, “Biotech Properties Draw Billions of Dollars as Other Real Estate Languishes,” Wall Street Journal, July 14, 2020. 2.  Lisa M. Schwartz and Steven Woloshin, “Medical Marketing in the United States, 1997–2016,” JAMA Special Communication 321, no. 1 (2019): 80–96. 3.  Richard Balon, Eugene V. Beresin, and Anthony Guerrero, “Medical-Education-Industrial Complex?” Academic Psychiatry 4 (2017): 495–497. 4.  United Nations, “International Standard Industrial Classification of All Economic Activities (ISIC),” Economic and Social Affairs Series M No.4/Rev.4, 2008, accessed October 14, 2020, https://unstats.un.org/unsd/publication/seriesm/seriesm _4rev4e.pdf.

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5.  Ke Xu et al., “Global Spending on Health: A World in Transition,” World Health Organization, 2019, accessed September 25, 2020, https://apps.who.int/iris/bitstream/handle/ 10665/330357/WHO-HIS-HGF-HF-WorkingPaper-19.4-eng .pdf?ua=1. 6. Ibid. 7.  Simon J. Williams et al., “The Pharmaceuticalisation of Society: A Framework for Analysis,” Sociology of Health and Illness 33, no. 5 (2011): 710–725. 8.  Ibid., 715. 9.  Lotfi Belkhir and Ahmed Elmeligi,“Carbon Footprint of the Global Pharmaceutical Industry and Relative Impact of Its Major Players,” Journal of Cleaner Production 214 (2019): 185–194. 10.  Roosa Tikkanen and Melina K. Abrams, “U.S. Health Care from a Global Perspective, 2019: Higher Spending, Worse Outcomes?” The Commonwealth Fund, January 30, 2020, https://doi.org/10.26099/7avy-fc29. 11. Ibid. 12. Ibid. 13.  William H. Shrank, Teresa L. Rogstad, and Natasha Parekh, “Waste in the US Health Care System: Estimated Costs and Potential for Savings,” JAMA 322, no. 15 (2019): 1501–1509. 14.  Better Homes and Gardens, October 2020. 15.  David A. Smith, “Globalizing Social Problems: An Agenda for the Twenty-First Century,” Social Problems 64, no. 1 (2017): 1–13. 16.  Immanuel Wallerstein, World-Systems Analysis (Durham, NC: Duke University Press, 2004). 17.  Smith, “Globalizing Social Problems.” 18. Ibid. 19.  Göran Therborn, “Plenary Address” (Finnish Sociological Society, 2018).

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20. Talcott Parsons, Social Systems and the Evolution of Action Theory (New York: Free Press, 1977). 21.  Smith, “Globalizing Social Problems.” 22.  Barbara Katz Rothman, The Book of Life (Boston: Beacon Press, 2001). 23.  David L. Sackett et al., “Evidence Based Medicine: What It Is and What It Isn’t,” BMJ 312 (1996): 71. 24.  Daniel Gardner, The Science of Fear (New York: Plume, 2009). 25.  Ibid., 3. 26.  Irene M. de Graaf et al., “Women’s Preference in Down Syndrome Screening,” Prenatal Diagnosis 22, no. 7 (2002): 624–629.

CHAPTER 5

1.  Jacobellis v. Ohio 378 S. Ct. 184 (1964). 2.  Howard Waitzkin and Rebeca Jasso-Aguilar, “Empire, Health, and Health Care: Perspectives at the End of Empire as We Have Known It,” Annual Review of Sociology 41 (2015): 271–290. 3.  Immanuel Wallerstein, World-Systems Analysis (Durham, NC: Duke University Press, 2004). 4.  Waitzkin and Jasso-Aguilar, “Empire, Health, and Health Care,” 273. 5.  Ibid., 274. 6.  Ibid., 277. 7.  Ibid., 278. 8.  Ibid., 280–281. 9.  Kevin Gallardo, Liseth Varas, and Mauricio Gallardo, “Inequality of Opportunity in Health: Evidence from Chile,” Revista de Saúde Pública 51 (2017): 110.

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10.  Novo Nordisk and Embajada de Dinamarca (organizers). The Diabetes Challenge in Chile (conference), 2015. 11.  Florencia Borrescio-Higa and Nieves Valdés, “Publicly Insured Caesarean Sections in Private Hospitals: A Repeated Crosssectional Analysis in Chile,” BMJ Open Access 9, no. 4 (2019): 6–7. 12.  Pía Rodríguez-Garrido and Josefina Goberna-Tricas, Birth Cultures (forthcoming). 13.  Judith Lorber, “Good Patients and Problem Patients: Conformity and Deviance in a General Hospital,” Journal of Health and Social Behavior 16, no. 2 (1975): 213–225. 14.  Boston Women’s Health Book Collective, Our Bodies, Ourselves: A Book by and for Women (New York: Simon & Schuster, 1973). 15.  Barbara Katz Rothman, “Our Day Jobs: Politics and Pedagogy in Academia,” Sociological Forum 31, no. 1, 2016. 16.  For example: Alison E. Thompson et al., “Prone Positioning in Awake, Nonintubated Patients With COVID-19 Hypoxemic Respiratory Failure,” JAMA Internal Medicine (2020). doi:10.1001/jamainternmed.2020.3030. 17.  Alan Petersen, Hope in Health (UK: Palgrave Macmillan, 2015).

CHAPTER 6

1.  Susan Sontag, Illness as Metaphor (New York: Farrar, Strauss and Giroux, 1978). 2.  Annemarie Jutel, “Sociology of Diagnosis,” Sociology of Health and Illness 31, no. 2 (2009): 283. 3.  Talcott Parsons, Social Systems and the Evolution of Action Theory (New York: Free Press, 1977). 4.  Kyla Bender-Baird, “Standing Trans Before the Law” (PhD diss., CUNY, 2020).

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NOTES TO CHAPTERS 6 AND 7

5. Ibid. 6.  Harold Garfinkel, “Passing and the Managed Achievement of Sex Status in an Intersex Person, Part 1,” in The Transgender Studies Reader, eds. Susan Stryker and Stephen Whittle (New York & London: Taylor & Francis, 2006 [1967]). 7.  Vern Bullough, The Development of Medicine as a Profession (Karger, 1966), 102.

CHAPTER 7

1.  Samuel Bloom, The Word as Scalpel: A History of Medical Sociology (New York: Oxford University Press, 2002). 2.  Barney Glaser and Anselm Strauss, Awareness of Dying (New York: Transaction, 1965). 3.  David Sudnow, Passing On (Englewood Cliffs, NJ: PrenticeHall, 1967). 4.  Stefan Timmermans, Sudden Death and the Myth of CPR (Philadelphia, PA: Temple University Press, 1999). 5.  Rukmini Callimachi, “Paramedics, Strained in the Hot Zone, Pull Back from CPR,” New York Times, May 11, 2020. 6.  Elisabeth Kübler-Ross, On Death and Dying (New York: Simon and Schuster, 1969). 7. “A Brief History of Hospice,” Understand Hospice, https://understandhospice.org/brief-history-hospice/. 8.  Joan M. Teno et al., “Change in End-of-Life Care for Medicare Beneficiaries,” JAMA 309, no. 5 (2013): 470–477. 9.  Private communication. 10.  Angela M. Sanford et al., “An International Definition for ‘Nursing Home,’” Journal of American Medical Directors Association 16, no. 3 (2015): 181–4. 11.  Tucker Doherty, “Summer Wave of Dementia Deaths Adds Thousands to Pandemic’s Deadly Toll,” Politico, September 16, 2020. https://www.politico.com/news/2020/09/16/ dementia-deaths-coronavirus-nursing-homes-416530.

NOTES TO CHAPTERS 7 AND 8

149

12.  Neil Gandal et al., “Long Term Care Facilities as a Risk Factor in Death from COVID-19,” VoxEU CEPR, July 13, 2020, https://voxeu.org/article/long-term-care-facilities-risk -factor-death-COVID-19. 13.  Andrew Cockburn, “Elder Abuse: Nursing Homes, the Coronavirus and the Bottom Line,” Harper’s Magazine, September 2020: 43–49. 14.  Private communication, Eileen Moran. 15.  Cockburn, “Elder Abuse.” 16.  Madeleine Bunting, Labours of Love: The Crisis of Care (London: Granta Books, 2020). 17.  Arlie Russell Hochschild, The Outsourced Self: Intimate Life in Market Times (New York: Holt, 2012). 18. Bunting, Labours of Love.

CHAPTER 8

1.  Private communication, Krishnendu Ray. 2.  Ignaz Semmelweis, The Etiology, Concept, and Prophylaxis of Childbed Fever (1861). 3.  Barbara Katz Rothman, In Labor (New York: Norton, 1982); Barbara Katz Rothman, Recreating Motherhood (New York: Norton, 1989); Wendy Simonds, Barbara Katz Rothman, and Bari Meltzer Norman, Laboring On (New York: Routledge, 2007). 4.  Barbara Ehrenreich and Deirdre English, Witches, Midwives and Nurses (New York: Feminist Press, 1973). 5.  Keisha L. Goode and Barbara Katz Rothman, Pregnancy and Birth (Santa Barbara, CA: ABC-CLIO, forthcoming). 6. Vivian Kobusingye Birchall, Africa2U, “Traditional Knowledge and Africa’s History of Innovation,” 2017, http:// www.africa2u.org/2017/10/traditional-knowledge-and-africas .html?m=1&fbclid=IwAR2A95b0Roa5ItW3ehtEtQfTKBSqMd 9nwgcJIbdjTtx9J6I7TFfJ3qmqldk.

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NOTES TO CHAPTERS 8 AMD 9

7.  Jacqueline Wolf, Caesarean Section (Baltimore: Johns Hopkins University Press, 2018). 8.  Anna Fielder, Going into Labour (University of Aukland, forthcoming dissertation). 9.  Shulamith Firestone, The Dialectic of Sex (London: Paladin, 1972), 193. 10.  Daniela Drandić and Fleur van Leeuwen, “COVID-19: A Watershed Moment for Women’s Rights in Childbirth,” Medical Anthropology Quarterly, August 2020. 11.  Keisha L. Goode, Birthing, Blackness, and the Body (New York: Columbia University Press, forthcoming). 12. Ibid.

CHAPTER 9

1.  Anastacia Marx de Salcedo, Combat-Ready Kitchen: How the U.S. Military Shapes the Way You Eat (New York: Current, 2015). 2.  Samuel R. Chamberlain, Jon E. Grant, William Trender, Peter Hellyer, and Adam Hampshire, “Post-Traumatic Stress Disorder Symptoms in COVID-19 Survivors: Online Population Survey,” British Journal of Psychiatry Open 7, no. 2 (2021): e47. doi:10.1192/bjo.2021.3. 3.  See the work of National Advocates for Pregnant Women, https://www.nationaladvocatesforpregnantwomen.org/. 4.  P. R. Lockhart, “What Serena Williams’s Scary Childbirth Story Says About Medical Treatment of Black Women,” Vox, January 11, 2018, https://www.vox.com/identities/2018/ 1/11/16879984/serena-williams-childbirth-scare-black-women. 5.  John Eligon, “Black Doctor Dies of COVID-19 After Complaining of Racist Treatment,” New York Times, December 24, 2020, https://www.nytimes.com/2020/12/23/us/susanmoore-black-doctor-indiana.html.

NOTES TO CHAPTERS 9 AND 10

151

6.  Nicholas A. Christakis, Apollo’s Arrow: The Profound and Enduring Impact of Coronavirus on the Way We Live (New York, Boston, London: Little, Brown Spark, 2020), 268. 7.  Ibid., 268. 8.  Ibid., 269.

CHAPTER 10

1.  Kate Connolly, “Germans Embrace Fresh Air to Ward Off Coronavirus,” Guardian, September 30, 2020. 2.  “Weekly Review,” Harper’s Magazine, August 25, 2020. 3.  Jun Mai and Kinling Lo, “Beijing Pushes Traditional Chinese Medicine as Coronavirus Treatment,” South China Morning Post, March 23, 2020, https://www.scmp.com/news/ china/society/article/3076500/beijing-pushes-traditional-chinese -medicine-coronavirus. 4.  Andrew Marr, John Micklethwait, Rana Mitter, and Katya Adler, “Start the Week—China and the Global Order— BBC Sounds,” BBC News, October 26, 2020, https://www .bbc.co.uk/sounds/play/m000nv4w. 5.  Centers for Disease Control and Prevention (CDC), “Ten Great Public Health Achievements—United States, 1900–1999,” MMWR: Morbidity and Mortality Weekly Report 48, no. 12 (April 2, 1999): 241–43. 6.  Stuart Blume, Immunization: How Vaccines Became Controversial (London: Reaktion Books, Limited, 2017). 7.  Stefan Riedel, “Edward Jenner and the History of Smallpox and Vaccination,” Proceedings (Baylor University Medical Center) 18, no. 1 (2005): 21–25, https://www.ncbi.nlm.nih.gov/ pmc/articles/PMC1200696/. 8.  An Inquiry into the Causes and Effects of the Variolae Vaccinae, a disease discovered in some of the western counties of England, particularly Gloucestershire and Known by the Name of Cow Pox, ncbi.nlm.nih.gov/pmc/articles/PMC1200696/.

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NOTES TO CHAPTER 10

9.  Nadja Durbach, “‘They Might as Well Brand Us’: Working-Class Resistance to Compulsory Vaccination in Victorian England,” Social History of Medicine 13, no. 1 (April 2000): 45–63, https://doi.org/10.1093/shm/13.1.45. 10. Blume, Immunization. 11.  Robert M. Wolfe and Lisa K. Sharp, “Anti-Vaccinationists Past and Present,” BMJ 325, no. 7361 (2002): 430–432, https://doi.org/10.1136/bmj.325.7361.430. 12.  Bernice L. Hausman, Anti/Vax: Reframing the Vaccination Controversy (Ithaca and London: Cornell University Press, 2019). 13.  Jason W. Busse, Rishma Walji, and Kumanan Wilson, “Parents’ Experiences Discussing Pediatric Vaccination with Healthcare Providers: A Survey of Canadian Naturopathic Patients,” PLOS One 6, no. 8 (2011): e22737, https://journals .plos.org/plosone/article?id=10.1371%2Fjournal.pone.0022737. 14.  Julie Leask, “Target the Fence-Sitters,” Nature 473, no. 7348 (May 2011): 443–445, https://doi.org/10.1038/473443a. 15.  Kathryn M. Edwards, Jesse M. Hackell, the Committee on Practice and Ambulatory Medicine, and the Committee on Infectious Diseases, “Countering Vaccine Hesitancy,” Pediatrics 138, no. 3 (2016): e20162146, https://pediatrics.aappublications. org/content/pediatrics/early/2016/08/25/peds.2016-2146.full .pdf. 16.  Noni E. MacDonald, “Vaccine Hesitancy: Definition, Scope and Determinants,” Vaccine, U.S. National Library of Medicine, August 14, 2015, https://pubmed.ncbi.nlm.nih .gov/25896383/. 17. Hausman, Anti/Vax. 18.  Nicholas A. Christakis, Apollo’s Arrow: The Profound and Enduring Impact of Coronavirus on the Way We Live (New York: Little, Brown Spark, 2020), 192. 19.  McKeown hypothesis, in Christakis, Apollo’s Arrow, 88.

NOTES TO CHAPTER 10

153

20.  I thank Holliday Tyson for making this connection. 21. Ivan Illich, Medical Nemesis (New York: Pantheon Books, 1976), 34. 22.  Arlie Russell Hochschild, The Outsourced Self: Intimate Life in Market Times (New York, NY: Metropolitan Books, 2012). 23.  Maggie Ornstein, “Opinion: New York’s Family Caregivers Should Be Prioritized for the COVID-19 Vaccine,” City Limits, January 20, 2021.