The Wounded Storyteller: Body, Illness, and Ethics


Arthur W. Frank - 1995
    That book ended by describing the existence of a "remission society," whose members all live with some form of illness or disability. The Wounded Storyteller is their collective portrait.Ill people are more than victims of disease or patients of medicine; they are wounded storytellers. People tell stories to make sense of their suffering; when they turn their diseases into stories, they find healing.Drawing on the work of authors such as Oliver Sacks, Anatole Broyard, Norman Cousins, and Audre Lorde, as well as from people he met during the years he spent among different illness groups, Frank recounts a stirring collection of illness stories, ranging from the well-known—Gilda Radner's battle with ovarian cancer—to the private testimonials of people with cancer, chronic fatigue syndrome, and disabilties. Their stories are more than accounts of personal suffering: they abound with moral choices and point to a social ethic.Frank identifies three basic narratives of illness in restitution, chaos, and quest. Restitution narratives anticipate getting well again and give prominence to the technology of cure. In chaos narratives, illness seems to stretch on forever, with no respite or redeeming insights. Quest narratives are about finding that insight as illness is transformed into a means for the ill person to become someone new.

Illness as Metaphor


Susan Sontag - 1978
    By demystifying the fantasies surrounding cancer, Sontag shows cancer for what it is - just a disease. Cancer, she argues, is not a curse, not a punishment, certainly not an embarrassment and, it is highly curable, if good treatment is followed. Almost a decade later, with the outbreak of a new, stigmatized disease replete with mystifications and punitive metaphors, Sontag wrote a sequel to Illness as Metaphor, extending the argument of the earlier book to the AIDS pandemic.These two essays now published together, Illness as Metaphor and AIDS and Its Metaphors, have been translated into many languages and continue to have an enormous influence on the thinking of medical professionals and, above all, on the lives of many thousands of patients and caregivers.

Pathologies of Power: Health, Human Rights and the New War on the Poor


Paul Farmer - 2003
    Paul Farmer, a physician and anthropologist with twenty years of experience working in Haiti, Peru, and Russia, argues that promoting the social and economic rights of the world’s poor is the most important human rights struggle of our times. With passionate eyewitness accounts from the prisons of Russia and the beleaguered villages of Haiti and Chiapas, this book links the lived experiences of individual victims to a broader analysis of structural violence. Farmer challenges conventional thinking within human rights circles and exposes the relationships between political and economic injustice, on one hand, and the suffering and illness of the powerless, on the other.Farmer shows that the same social forces that give rise to epidemic diseases such as HIV and tuberculosis also sculpt risk for human rights violations. He illustrates the ways that racism and gender inequality in the United States are embodied as disease and death. Yet this book is far from a hopeless inventory of abuse. Farmer’s disturbing examples are linked to a guarded optimism that new medical and social technologies will develop in tandem with a more informed sense of social justice. Otherwise, he concludes, we will be guilty of managing social inequality rather than addressing structural violence. Farmer’s urgent plea to think about human rights in the context of global public health and to consider critical issues of quality and access for the world’s poor should be of fundamental concern to a world characterized by the bizarre proximity of surfeit and suffering.

The Pastoral Clinic: Addiction and Dispossession along the Rio Grande


Ángela García - 2010
    In a luminous narrative, Angela Garcia chronicles the lives of several Hispanic addicts, introducing us to the intimate, physical, and institutional dependencies in which they are entangled. We discover how history pervades this region that has endured centuries of social inequality, drug and alcohol abuse, and material and cultural dispossession, and we come to see its experience of the opioid epidemic as a contemporary expression of these conditions, as well as a manifestation of the human desire to be released from them. With lyrical prose, evoking the Española Valley and its residents through conversations, encounters, and recollections, The Pastoral Clinic is at once a devastating portrait of immigration and addiction, a rich ethnography of place, and an eloquent call to political activists, politicians, and medical professionals for a new ethics of substance abuse treatment and care.

The Birth of the Clinic: An Archaeology of Medical Perception


Michel Foucault - 1963
    For the first time, medical knowledge took on a precision that had formerly belonged only to mathematics. The body became something that could be mapped. Disease became subject to new rules of classification. And doctors begin to describe phenomena that for centuries had remained below the threshold of the visible and expressible.In The Birth of the Clinic the philosopher and intellectual historian who may be the true heir to Nietzsche charts this dramatic transformation of medical knowledge. As in his classic Madness and Civilization, Michel Foucault shows how much what we think of as pure science owes to social and cultural attitudes — in this case, to the climate of the French Revolution. Brilliant, provocative, and omnivorously learned, his book sheds new light on the origins of our current notions of health and sickness, life and death.

The Body in Pain: The Making and Unmaking of the World


Elaine Scarry - 1985
    The book is an analysis of physical suffering and its relation to the numerous vocabularies and cultural forces--literary, political, philosophical, medical, religious--that confront it. Elaine Scarry bases her study on a wide range of sources: literature and art, medical case histories, documents on torture compiled by Amnesty International, legal transcripts of personal injury trials, and military and strategic writings by such figures as Clausewitz, Churchill, Liddell Hart, and Kissinger, She weaves these into her discussion with an eloquence, humanity, and insight that recall the writings of Hannah Arendt and Jean-Paul Sartre. Scarry begins with the fact of pain's inexpressibility. Not only is physical pain enormously difficult to describe in words--confronted with it, Virginia Woolf once noted, "language runs dry"--it also actively destroys language, reducing sufferers in the most extreme instances to an inarticulate state of cries and moans. Scarry analyzes the political ramifications of deliberately inflicted pain, specifically in the cases of torture and warfare, and shows how to be fictive. From these actions of "unmaking" Scarry turns finally to the actions of "making"--the examples of artistic and cultural creation that work against pain and the debased uses that are made of it. Challenging and inventive, The Body in Pain is landmark work that promises to spark widespread debate.

The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures


Anne Fadiman - 1997
    By 1988 she was living at home but was brain dead after a tragic cycle of misunderstanding, over-medication, and culture clash: "What the doctors viewed as clinical efficiency the Hmong viewed as frosty arrogance." The Spirit Catches You and You Fall Down is a tragedy of Shakespearean dimensions, written with the deepest of human feeling. Sherwin Nuland said of the account, "There are no villains in Fadiman's tale, just as there are no heroes. People are presented as she saw them, in their humility and their frailty—and their nobility.

Narrative Medicine: Honoring the Stories of Illness


Rita Charon - 2006
    Generated from a confluence of sources including humanities and medicine, primary care medicine, narratology, and the study of doctor-patient relationships, narrative medicine is medicine practiced with the competence to recognize, absorb, interpret, and be moved by the stories of illness. By placing events in temporal order, with beginnings, middles, and ends, and by establishing connections among things using metaphor and figural language, narrative medicine helps doctors to recognize patients and diseases, convey knowledge, accompany patients through the ordeals of illness--and according to Rita Charon, can ultimately lead to more humane, ethical, and effective health care. Trained in medicine and in literary studies, Rita Charon is a pioneer of and authority on the emerging field of narrative medicine. In this important and long-awaited book she provides a comprehensive and systematic introduction to the conceptual principles underlying narrative medicine, as well as a practical guide for implementing narrative methods in health care. A true milestone in the field, it will interest general readers, and experts in medicine and humanities, and literary theory.

The Body Multiple: Ontology in Medical Practice


Annemarie Mol - 2002
    Drawing on fieldwork in a Dutch university hospital, Annemarie Mol looks at the day-to-day diagnosis and treatment of atherosclerosis. A patient information leaflet might describe atherosclerosis as the gradual obstruction of the arteries, but in hospital practice this one medical condition appears to be many other things. From one moment, place, apparatus, specialty, or treatment, to the next, a slightly different “atherosclerosis” is being discussed, measured, observed, or stripped away. This multiplicity does not imply fragmentation; instead, the disease is made to cohere through a range of tactics including transporting forms and files, making images, holding case conferences, and conducting doctor-patient conversations.The Body Multiple juxtaposes two distinct texts. Alongside Mol’s analysis of her ethnographic material—interviews with doctors and patients and observations of medical examinations, consultations, and operations—runs a parallel text in which she reflects on the relevant literature. Mol draws on medical anthropology, sociology, feminist theory, philosophy, and science and technology studies to reframe such issues as the disease-illness distinction, subject-object relations, boundaries, difference, situatedness, and ontology. In dialogue with one another, Mol’s two texts meditate on the multiplicity of reality-in-practice.Presenting philosophical reflections on the body and medical practice through vivid storytelling, The Body Multiple will be important to those in medical anthropology, philosophy, and the social study of science, technology, and medicine.

Improvising Medicine: An African Oncology Ward in an Emerging Cancer Epidemic


Julie Livingston - 2012
    This affecting ethnography follows patients, their relatives, and ward staff as a cancer epidemic emerged in Botswana. The epidemic is part of an ongoing surge in cancers across the global south; the stories of Botswana's oncology ward dramatize the human stakes and intellectual and institutional challenges of an epidemic that will shape the future of global health. They convey the contingencies of high-tech medicine in a hospital where vital machines are often broken, drugs go in and out of stock, and bed-space is always at a premium. They also reveal cancer as something that happens between people. Serious illness, care, pain, disfigurement, and even death emerge as deeply social experiences. Livingston describes the cancer ward in terms of the bureaucracy, vulnerability, power, biomedical science, mortality, and hope that shape contemporary experience in southern Africa. Her ethnography is a profound reflection on the social orchestration of hope and futility in an African hospital, the politics and economics of healthcare in Africa, and palliation and disfigurement across the global south.Julie Livingston is Associate Professor of History at Rutgers University. She is the author of Debility and the Moral Imagination in Botswana and a coeditor of Three Shots at Prevention: The HPV Vaccine and the Politics of Medicine's Simple Solutions and A Death Retold: Jesica Santillan, the Bungled Transplant, and Paradoxes of Medical Citizenship."Improvising Medicine is as good as it gets. It is a book that will be read for decades to come. I have always thought that great ethnography transcends the specificities of time and place, of the particular, to offer a glimpse of the universal. This gripping book does just that, and the subtle and grounded way that it speaks to global health and debates in medical anthropology makes it a major addition to both fields."—Vinh-Kim Nguyen, M.D., author of The Republic of Therapy: Triage and Sovereignty in West Africa's Time of AIDS“Improvising Medicine is a luminous book by a highly respected Africanist whose work creatively bridges anthropology and history. A product of intense listening and observation, deep care, and superb analytical work, it will become a canonical ethnography of medicine in the global south and will have a big impact across the social sciences and medical humanities.”—João Biehl, author of Will to Live: AIDS Therapies and the Politics of Survival and Vita: Life in a Zone of Social Abandonment

The Protest Psychosis: How Schizophrenia Became a Black Disease


Jonathan M. Metzl - 2010
    But a very different civil rights history evolved at the Ionia State Hospital for the Criminally Insane in Ionia, Michigan. In The Protest Psychosis, psychiatrist and cultural critic Jonathan Metzl tells the shocking story of how schizophrenia became the diagnostic term overwhelmingly applied to African American protesters at Ionia—for political reasons as well as clinical ones. Expertly sifting through a vast array of cultural documents, Metzl shows how associations between schizophrenia and blackness emerged during the tumultuous decades of the 1960s and 1970s—and he provides a cautionary tale of how anxieties about race continue to impact doctor-patient interactions in our seemingly postracial America.From the Trade Paperback edition.

Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America


Robert Whitaker - 2010
    What is going on? Anatomy of an Epidemic challenges readers to think through that question themselves. First, Whitaker investigates what is known today about the biological causes of mental disorders. Do psychiatric medications fix “chemical imbalances” in the brain, or do they, in fact, create them? Researchers spent decades studying that question, and by the late 1980s, they had their answer. Readers will be startled—and dismayed—to discover what was reported in the scientific journals. Then comes the scientific query at the heart of this book: During the past fifty years, when investigators looked at how psychiatric drugs affected long-term outcomes, what did they find? Did they discover that the drugs help people stay well? Function better? Enjoy good physical health? Or did they find that these medications, for some paradoxical reason, increase the likelihood that people will become chronically ill, less able to function well, more prone to physical illness?  This is the first book to look at the merits of psychiatric medications through the prism of long-term results. Are long-term recovery rates higher for medicated or unmedicated schizophrenia patients? Does taking an antidepressant decrease or increase the risk that a depressed person will become disabled by the disorder? Do bipolar patients fare better today than they did forty years ago, or much worse? When the National Institute of Mental Health (NIMH) studied the long-term outcomes of children with ADHD, did they determine that stimulants provide any benefit?  By the end of this review of the outcomes literature, readers are certain to have a haunting question of their own: Why have the results from these long-term studies—all of which point to the same startling conclusion—been kept from the public?  In this compelling history, Whitaker also tells the personal stories of children and adults swept up in this epidemic. Finally, he reports on innovative programs of psychiatric care in Europe and the United States that are producing good long-term outcomes. Our nation has been hit by an epidemic of disabling mental illness, and yet, as Anatomy of an Epidemic reveals, the medical blueprints for curbing that epidemic have already been drawn up.

Vita: Life in a Zone of Social Abandonment


João Biehl - 2005
    This haunting, unforgettable story centers on a young woman named Catarina, increasingly paralyzed and said to be mad, living out her time at Vita. Anthropologist João Biehl leads a detective-like journey to know Catarina; to unravel the cryptic, poetic words that are part of the “dictionary” she is compiling; and to trace the complex network of family, medicine, state, and economy in which her abandonment and pathology took form.As Biehl painstakingly relates Catarina’s words to a vanished world and elucidates her condition, we learn of subjectivities unmade and remade under economic pressures, pharmaceuticals as moral technologies, a public common sense that lets the unsound and unproductive die, and anthropology’s unique power to work through these juxtaposed fields. Vita’s methodological innovations, bold fieldwork, and rigorous social theory make it an essential reading for anyone who is grappling with how to understand the conditions of life, thought and ethics in the contemporary world.

Argonauts of the Western Pacific


Bronisław Malinowski - 1961
    His pages have become an almost indispensable link between the knowing of exotic and remote people with theoretical knowledge about humankind. This volume--originally published in 1922--can be considered the founding document of economic anthropology, and remains the best one to read. It emphasizes the great significance of primitive economics by singling out the notable exchange system of the Trobriand Islands for special consideration. Although the main theme is economic, constant reference is made in this milestone of anthropological research and interpretation to social organization, life and meaning, the power of magic, and to mythology and folklore.

The Social Transformation of American Medicine: The Rise of a Sovereign Profession and the Making of a Vast Industry


Paul Starr - 1982
    Jack Geiger, M.D., New York Times Book Review