The politics and science of health and disease remain contested terrain among scientists, health practitioners, policy makers, industry, communities, and the public. Stakeholders in disputes about illnesses or conditions disagree over their fundamental causes as well as how they should be treated and prevented. This thought-provoking book crosses disciplinary boundaries by engaging with both public health policy and social science, asserting that science, activism, and policy are not separate issues and showing how the contribution of environmental factors in disease is often overlooked.
What makes a disease real? Why is it that patients with chronic fatigue syndrome or fibromyalgia are doubted when they say they are in pain, and cannot access the same benefits of patient-hood that others can? What defines the limits of our belief and, ultimately, compassion, when it comes to disease? These are the questions approached in this book, which draws upon patients’ experiences and situates them among a diverse set of literatures, from the history and philosophy of medicine to the sociology of health and disease. The question of a patient’s identity and their understanding of disease is often assumed to emerge from their relationship with healthcare, but the case is made here that other, inter-personal factors are more salient. What a patient with a contested illness comes up against is not simply a medical categorisation – it is a prevailing notion of disease across society, and one they struggle to assimilate themselves into. Contested Illness in Context will appeal to students and researchers interested in fields such as the history and philosophy of medicine, the sociology of health and illness, medical anthropology, or disease and illness generally. It may also interest patients and doctors who struggle with difficult medical cases.
While many doctors claim that Lyme disease—a tick-borne bacterial infection—is easily diagnosed and treated, other doctors and the patients they care for argue that it can persist beyond standard antibiotic treatment in the form of chronic Lyme disease. In Divided Bodies, Abigail A. Dumes offers an ethnographic exploration of the Lyme disease controversy that sheds light on the relationship between contested illness and evidence-based medicine in the United States. Drawing on fieldwork among Lyme patients, doctors, and scientists, Dumes formulates the notion of divided bodies: she argues that contested illnesses are disorders characterized by the division of bodies of thought in which the patient's experience is often in conflict with how it is perceived. Dumes also shows how evidence-based medicine has paradoxically amplified differences in practice and opinion by providing a platform of legitimacy on which interested parties—patients, doctors, scientists, politicians—can make claims to medical truth.
In 25 papers, academics and a few environmental scientists/ activists discuss profound social, policy, and competing paradigm issues concerning the contested environment-disease link in a "postnatural" world. Include discussion questions. Kroll-Smith is a professor of sociology at the U. of New Orleans. Annotation copyrighted by Book News, Inc., Portland, OR
This book represents the first collection of research on health social movements. Demonstrates that health social movements are an innovative and powerful form of political action. Brings together the study of health and illness with social movement theory in order to establish a basis for the study of health social movements. Covers disease-based movements focused on diseases such as Alzheimer’s and breast cancer. Also addresses issue-based movements such as the pro-choice movement, the movement for complementary and alternative medicine, and movements around stem cell research. Illustrates the value of interdisciplinary approaches to studying health social movements.
We've seen it before, with asbestos-related disease, leukaemia clusters and lung cancer caused by cigarettes. There tends to be a lag between the emergence of environmental risks and chemical injuries, and their recognition and therapeutic treatment by medicine and the law. Law, Environmental Illness and Medical Uncertaintyexamines how our society governs new health concerns as they emerge, and the barriers that face new and uncertain theories seeking recognition in the law. In this book, Tarryn Phillips focuses her investigation on the struggle over the controversial condition multiple chemical sensitivities, or MCS (also known as environmental illness). Presenting nine case studies where workers sought compensation for MCS from their multinational employers, she captures a nuanced portrait of their embittered, unequal battles over the scientific, legal and insurance paradigms for understanding toxic risk, environmental illness and the regulation of industry. It draws on three years of fieldwork in Australia, including interview data with lay people and sympathetic and sceptical experts, participant observation in the courtroom and textual analysis of official reports. The book gives a unique, ethnographic insight into the governance of risk and uncertainty within a neoliberal economy, medico-scientific controversies and courtroom dramas. It highlights how a skeptical approach towards emergent environmental concerns is encouraged within the current regime, and decision-makers face disincentives for taking a sympathetic approach. Compellingly written and easy to read, it should appeal widely to interested lay people, and students and scholars of science and technology studies, medical anthropology, sociology of health and illness, and critical legal studies.
Editor of the award-winning site Feministing.com, Maya Dusenbery brings together scientific and sociological research, interviews with doctors and researchers, and personal stories from women across the country to provide the first comprehensive, accessible look at how sexism in medicine harms women today. In Doing Harm, Dusenbery explores the deep, systemic problems that underlie women’s experiences of feeling dismissed by the medical system. Women have been discharged from the emergency room mid-heart attack with a prescription for anti-anxiety meds, while others with autoimmune diseases have been labeled “chronic complainers” for years before being properly diagnosed. Women with endometriosis have been told they are just overreacting to “normal” menstrual cramps, while still others have “contested” illnesses like chronic fatigue syndrome and fibromyalgia that, dogged by psychosomatic suspicions, have yet to be fully accepted as “real” diseases by the whole of the profession. An eye-opening read for patients and health care providers alike, Doing Harm shows how women suffer because the medical community knows relatively less about their diseases and bodies and too often doesn’t trust their reports of their symptoms. The research community has neglected conditions that disproportionately affect women and paid little attention to biological differences between the sexes in everything from drug metabolism to the disease factors—even the symptoms of a heart attack. Meanwhile, a long history of viewing women as especially prone to “hysteria” reverberates to the present day, leaving women battling against a stereotype that they’re hypochondriacs whose ailments are likely to be “all in their heads.” Offering a clear-eyed explanation of the root causes of this insidious and entrenched bias and laying out its sometimes catastrophic consequences, Doing Harm is a rallying wake-up call that will change the way we look at health care for women.
Gulf War Syndrome: Is It a Real Disease? asks a recent headline in the New York Times. This question—are certain diseases real?—lies at the heart of a simmering controversy in the United States, a debate that has raged, in different contexts, for centuries. In the early nineteenth century, the air of European cities, polluted by open sewers and industrial waste, was generally thought to be the source of infection and disease. Thus the term miasma—literally deathlike air—came into popular use, only to be later dismissed as medically unsound by Louis Pasteur. While controversy has long swirled in the United States around such illnesses as chronic fatigue syndrome and Epstein-Barr virus, no disorder has been more aggressively contested than environmental illness, a disease whose symptoms are distinguished by an extreme, debilitating reaction to a seemingly ordinary environment. The environmentally ill range from those who have adverse reactions to strong perfumes or colognes to others who are so sensitive to chemicals of any kind that they must retreat entirely from the modern world. Bodies in Protest does not seek to answer the question of whether or not chemical sensitivity is physiological or psychological, rather, it reveals how ordinary people borrow the expert language of medicine to construct lay accounts of their misery. The environmentally ill are not only explaining their bodies to themselves, however, they are also influencing public policies and laws to accommodate the existence of these mysterious illnesses. They have created literally a new body that professional medicine refuses to acknowledge and one that is becoming a popular model for rethinking conventional boundaries between the safe and the dangerous. Having interviewed dozens of the environmentally ill, the authors here recount how these people come to acknowledge and define their disease, and themselves, in a suddenly unlivable world that often stigmatizes them as psychologically unstable. Bodies in Protest is the dramatic story of human bodies that no longer behave in a manner modern medicine can predict and control.
A NEW YORK TIMES BESTSELLER FINALIST FOR THE 2022 NATIONAL BOOK AWARD FOR NONFICTION Named one of the BEST BOOKS OF 2022 by NPR, The New Yorker, Time, and Vogue “Remarkable.” –Andrew Solomon, The New York Times Book Review "At once a rigorous work of scholarship and a radical act of empathy.”—Esquire "A ray of light into those isolated cocoons of darkness that, at one time or another, may afflict us all.” —The Wall Street Journal "Essential."—The Boston Globe A landmark exploration of one of the most consequential and mysterious issues of our time: the rise of chronic illness and autoimmune diseases A silent epidemic of chronic illnesses afflicts tens of millions of Americans: these are diseases that are poorly understood, frequently marginalized, and can go undiagnosed and unrecognized altogether. Renowned writer Meghan O’Rourke delivers a revelatory investigation into this elusive category of “invisible” illness that encompasses autoimmune diseases, post-treatment Lyme disease syndrome, and now long COVID, synthesizing the personal and the universal to help all of us through this new frontier. Drawing on her own medical experiences as well as a decade of interviews with doctors, patients, researchers, and public health experts, O’Rourke traces the history of Western definitions of illness, and reveals how inherited ideas of cause, diagnosis, and treatment have led us to ignore a host of hard-to-understand medical conditions, ones that resist easy description or simple cures. And as America faces this health crisis of extraordinary proportions, the populations most likely to be neglected by our institutions include women, the working class, and people of color. Blending lyricism and erudition, candor and empathy, O’Rourke brings together her deep and disparate talents and roles as critic, journalist, poet, teacher, and patient, synthesizing the personal and universal into one monumental project arguing for a seismic shift in our approach to disease. The Invisible Kingdom offers hope for the sick, solace and insight for their loved ones, and a radical new understanding of our bodies and our health.
