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.
This book critically compares conflicting perspectives and overlapping themes within the study of disability and illness across recent decades. With fresh interpretation of traditional theory in medical sociology and informed commentary on theoretical debates in disability studies, it is provocative reading for students and scholars in this field.
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.
"Autism has become an all-too-common diagnosis here in the United States. Typically diagnosed in early childhood, Autism Spectrum Disorder (ASD) is identified based on developmental delays in three areas: language, social skills, and particular behaviors. But what Americans know and think about autism is shaped by our social relationship to health, disease, and our country's medical system. The Western Disease explores the ways that Somali recent immigrants make sense of their children's diagnosis of autism. Having never heard of the disease before migrating to North America, they often determine that since autism doesn't exist in Somalia, it must be a Western disease. Many even believe it is Somalis' forced migration to North America that has rendered their children vulnerable to the development of autism. As Decoteau shows, autism--as a category, identity, and diagnosis--does not exist in Somalia because the infrastructure for its emergence is absent. When Somalis say that autism does not exist in Somalia, however, they mean that the disorder is Western in nature--that it is caused by environmental and health conditions unique to life in North America. Following Somali parents as they struggle to make sense of their children's illness and advocate for alternative care, Decoteau untangles the complicated ways immigration, race, and class affect the Somali relationship to the disease, and how this helps us understand our distinctly American approach to healthcare"--
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.
"When sociologist Georgiann Davis was a teenager, her doctors discovered that she possessed XY chromosomes, marking her as intersex. Rather than share this information with her, they withheld the diagnosis in order to "protect" the development of her gender identity; it was years before Davis would see her own medical records as an adult and learn the truth. Davis' experience is not unusual. Many intersex people feel isolated from one another and violated by medical practices that support conventional notions of the male/female sex binary which have historically led to secrecy and shame about being intersex. Yet, the rise of intersex activism and visibility in the US has called into question the practice of classifying intersex as an abnormality, rather than as a mere biological variation. This shift in thinking has the potential to transform entrenched intersex medical treatment. In Contesting Intersex, Davis draws on interviews with intersex people, their parents, and medical experts to explore the oft-questioned views on intersex in medical and activist communities, as well as the evolution of thought in regards to intersex visibility and transparency. She finds that framing intersex as an abnormality is harmful and can alter the course of one's life. In fact, controversy over this framing continues, as intersex has been renamed a 'disorder of sex development' throughout medicine. This happened, she suggests, as a means for doctors to reassert their authority over the intersex body in the face of increasing intersex activism in the 1990s and feminist critiques of intersex medical treatment. Davis argues the renaming of 'intersex' as a 'disorder of sex development' is strong evidence that the intersex diagnosis is dubious. Within the intersex community, though, disorder of sex development terminology is hotly disputed; some prefer not to use a term which pathologizes their bodies, while others prefer to think of intersex in scientific terms. Although terminology is currently a source of tension within the movement, Davis hopes intersex activists and their allies can come together to improve the lives of intersex people, their families, and future generations. However, for this to happen, the intersex diagnosis, as well as sex, gender, and sexuality, needs to be understood as socially constructed phenomena." -- Publisher's description
By portraying the circumstances of people living with chronic conditions in radically different contexts, from Alzheimer’s patients in the UK to homeless people with psychiatric disorders in India, Managing Chronicity in Unequal States offers glimpses of what dealing with medically complex conditions in stratified societies means. While in some places the state regulates and intrudes on the most intimate aspects of chronic living, in others it is utterly and criminally absent. Either way, it is a present/absent actor that deeply conditions people’s opportunities and strategies of care. This book explores how individuals, groups and communities navigate uncertain and unequal healthcare systems, in which inherent moral judgements on human worth have long-lasting effects on people’s wellbeing. This is key reading for anyone wishing to deconstruct the issues at stake when analysing how care and chronicity are entangled with multiple institutional, economic, and other circumstantial factors. How people access the available informal and formal resources as well as how they react to official diagnoses and decisions are important facets of the management of chronicity. In the arena of care, people with chronic conditions find themselves negotiating restrictions and handling issues of power and (inter)dependency in relationships of inequality and proximity. This is particularly relevant in current times, when care has given in to the lure of the market, and the possibility of living a long and fulfilling life has been drastically reduced, transformed into a ‘reward’ for the few who have been deemed worthy of it.
