In The Already Dead, Eric Cazdyn examines the ways that contemporary medicine, globalization, politics, and culture intersect to produce a condition and concept that he names "the new chronic." Cazdyn argues that just as contemporary medicine uses targeted drug therapies and biotechnology to manage rather than cure diseases, global capitalism aims not for resolution but rather for a continual state of crisis management that perpetuates the iniquities of the status quo. Engaging critical theory, philosophy, and psychoanalysis, he explores the ways that crisis affects perceptions of time and denies alternative ways of being and thinking.
To resist the exploitative crisis state, which Cazdyn terms "the global abyss," he posits the concept of "the already dead," a condition in which the subject (medical, political, psychological) has been killed but has yet to die. Embracing this condition, he argues, allows for a revolutionary consciousness open to a utopian future. Woven into Cazdyn's analysis are personal anecdotes about his battle with leukemia and his struggle to obtain Canadian citizenship during his illness. These narratives help to illustrate his systemic critique, one that reconfigures the relationship between politics, capitalism, revolution, and the body.
In 1987 poet and physician Jon Mukand published Sutured Words, a volume of contemporary poems to help patients, their families and friends, and all health care professionals embrace the complexity of healing, illness, and death. Robert Coles called the collection “a wonderful source of inspiration and instruction for any of us who are trying to figure out what our work means”; Norman Cousins was impressed by the “discernment and high quality of the selections.” Now, in Articulations, Mukand adds more than a hundred new poems to the strongest poems from Sutured Words to give us a lyrical, enlightened understanding of the human dimensions of suffering and illness
The rise of Western scientific medicine fully established the medical sector of the U.S. political economy by the end of the Second World War, the first “social transformation of American medicine.” Then, in an ongoing process called medicalization, the jurisdiction of medicine began expanding, redefining certain areas once deemed moral, social, or legal problems (such as alcoholism, drug addiction, and obesity) as medical problems. The editors of this important collection argue that since the mid-1980s, dramatic, and especially technoscientific, changes in the constitution, organization, and practices of contemporary biomedicine have coalesced into biomedicalization, the second major transformation of American medicine. This volume offers in-depth analyses and case studies along with the groundbreaking essay in which the editors first elaborated their theory of biomedicalization.
Contributors. Natalie Boero, Adele E. Clarke, Jennifer R. Fishman, Jennifer Ruth Fosket, Kelly Joyce, Jonathan Kahn, Laura Mamo, Jackie Orr, Elianne Riska, Janet K. Shim, Sara Shostak
Chronic Conditions, Fluid States explores the uneven impact of chronic illness and disability on individuals, families, and communities in diverse local and global settings. To date, much of the social as well as biomedical research has treated the experience of illness and the challenges of disease control and management as segmented and episodic. Breaking new ground in medical anthropology by challenging the chronic/acute divide in illness and disease, the editors, along with a group of rising scholars and some of the most influential minds in the field, address the concept of chronicity, an idea used to explain individual and local life-worlds, question public health discourse, and consider the relationship between health and the globalizing forces that shape it.
At the edge of mortality there is a place where the seriously ill or dying wait—a place where they may often feel vulnerable or alone. For over forty years, bioethicist cum philosopher Richard Zaner has been at the side of many of those people offering his incalculable gift of listening, and helping to lighten their burdens—not only with his considerable skills, but with his humanity as well.
The narratives Richard Zaner shares in Conversations on the Edge are informed by his depth of knowledge in medicine and bioethics, but are never "clinical." A genuine and caring heart beats underneath his compassionate words. Zaner has written several books in which he tells poignant stories of patients and families he has encountered; there is no question that this is his finest.
In Conversations on the Edge, Zaner reveals an authentic empathy that never borders on the sentimental. Among others, he discusses Tom, a dialysis patient who finally reveals that his inability to work—encouraged by his overprotective mother—is the source of his hostility to treatment; Jim and Sue, young parents who must face the nightmare of letting go of their premature twins, one after the other; Mrs. Oland, whose family refuses to recognize her calm acceptance of her own death; and, in the final chapter, the author's mother, whose slow demise continues to haunt Zaner's professional and personal life.
These stories are filled with pain and joy, loneliness and hope. They are about life and death, about what happens in hospital rooms—and that place at the edge—when we confront mortality. It is the rarest of glimpses into the world of patients, their families, healers, and those who struggle, like Zaner, to understand.
Eros and Illness
David B. Morris Harvard University Press, 2017 Library of Congress R726.5.M666 2017 | Dewey Decimal 610
When we or our loved ones fall ill, our world is thrown into disarray, our routines are interrupted, our beliefs shaken. David Morris offers an unconventional, deeply human exploration of what it means to live with, and live through, disease. He shows how desire—emotions, dreams, stories, romance, even eroticism—plays a crucial part in illness.
"Well written and fascinating to read. This fine book takes a large step in...contributing to the only slowly dawning awareness of the general public, and the health workers too, of the significance of chronic illness."
--Anselm Strauss, University of California, San Francisco
Based on in-depth interviews with eighty people who have epilepsy, this book gives a first-hand account of what it is like to cope with a chronic illness, while working, playing, and building relationships. The authors recount how people discover they have epilepsy and what it means; how families respond to someone labeled "epileptic"; how seizures affect a person's sense of self and self-control.
Epilepsy patients explain what they want from their doctors and why the medication practices they develop may not coincide with "doctor's orders." The variety of experiences of epilepsy is suggested both by the interviews and by the range of terms for seizures--Petit Mal, Grand Mal, auras, fits, absences.
The principal difficulty for many people with epilepsy is not the medical condition but the social stigma. A person with epilepsy has to cope with discrimination in obtaining a job, insurance, or a driver's license, and he or she may be cautious about revealing this "disabling" condition to an employer or even a spouse. People with epilepsy may manage information about themselves and their "lapses" and look for "safe places" like restrooms where they can be alone should a seizure begin. Many of those interviewed complained of overreactions to seizures by colleagues or bystanders: epilepsy patients were embarrassed at having provoked a public crisis or were annoyed at waking up in a hospital emergency room.
This is a book for people who have epilepsy, for their families and friends; for health care professionals who deal with chronic illnesses; and for students of medical sociology and the sociology of deviance.
"For anyone who would like to 'get inside' the experience of having epilepsy, this book is probably as close as one can come."
"In dispelling the notion that 'the person is the illness,' these interviews with 80 individuals reveal that those suffering from epilepsy have learned to accept it as merely another facet of their lives. A valuable contribution for those with epilepsy, for their family and friends, for medical personnel, and for the general public."
"...carefully outlined and clearly written.... Those affected by chronic conditions may find the book most helpful.... Family and helping professionals may discover new insights.... Social scientists, especially those interested in chronic illnesses, will benefit from the research conclusions and suggestions for further research."
--Medical Anthropology Quarterly
"It represents an important advance in the medical sociology literature as well as a contribution to qualitative sociology. I think that the book should become a contemporary classic in medical sociology."
"...an important contribution.... In focusing on what it is like to have epilepsy in this society, Schneider and Conrad have reversed an earlier concern for the medicalization of deviance, opting in this work for an understanding of the stigmatization of illness."
In the 1850s, "Drapetomania" was the medical term for a disease found among black slaves in the United States. The main symptom was a strange desire to run away from their masters. In earlier centuries gout was understood as a metabolic disease of the affluent, so much so that it became a badge of uppercrust honor—and a medical excuse to avoid hard work. Today, is there such a thing as mental illness, or is mental illness just a myth? Is Alzheimer's really a disease? What is menopause—a biological or a social construction?
Historically one can see that health, disease, and illness are concepts that have been ever fluid. Modern science, sociology, philosophy, even society—among other factors—constantly have these issues under microscopes, learning more, defining and redefining ever more exactly. Yet often that scrutiny, instead of leading toward hard answers, only leads to more questions. Health, Disease, and Illness brings together a sterling list of classic and contemporary thinkers to examine the history, state, and future of ever-changing "concepts" in medicine.
Divided into four parts—Historical Discussions; Characterizing Health, Disease, and Illness; Clinical Applications of Health and Disease; and Normalcy, Genetic Disease, and Enhancement: The Future of the Concepts of Health and Disease—the reader can see the evolutionary arc of medical concepts from the Greek physician Galen of Pergamum (ca. 150 ce) who proposed that "the best doctor is also a philosopher," to contemporary discussions of the genome and morality. The editors have recognized a crucial need for a deeper integration of medicine and philosophy with each other, particularly in an age of dynamically changing medical science—and what it means, medically, philosophically, to be human.
Illness as Narrative
Ann Jurecic University of Pittsburgh Press, 2012 Library of Congress PS228.D57J87 2012 | Dewey Decimal 810.93561
For most of literary history, personal confessions about illness were considered too intimate to share publicly. By the mid-twentieth century, however, a series of events set the stage for the emergence of the illness narrative. The increase of chronic disease, the transformation of medicine into big business, the women’s health movement, the AIDS/HIV pandemic, the advent of inexpensive paperbacks, and the rise of self-publishing all contributed to the proliferation of narratives about encounters with medicine and mortality.
While the illness narrative is now a staple of the publishing industry, the genre itself has posed a problem for literary studies. What is the role of criticism in relation to personal accounts of suffering? Can these narratives be judged on aesthetic grounds? Are they a collective expression of the lost intimacy of the patient-doctor relationship? Is their function thus instrumental—to elicit the reader’s empathy?
To answer these questions, Ann Jurecic turns to major works on pain and suffering by Susan Sontag, Elaine Scarry, and Eve Sedgwick and reads these alongside illness narratives by Jean-Dominique Bauby, Reynolds Price, and Anne Fadiman, among others. In the process, she defines the subgenres of risk and pain narratives and explores a range of critical responses guided, alternately, by narrative empathy, the hermeneutics of suspicion, and the practice of reparative reading. Illness as Narrative seeks to draw wider attention to this form of life writing and to argue for new approaches to both literary criticism and teaching narrative. Jurecic calls for a practice that’s both compassionate and critical. She asks that we consider why writers compose stories of illness, how readers receive them, and how both use these narratives to make meaning of human fragility and mortality.
Is drug addiction a disease that can be treated, or is it a crime that should be punished? In her probing study, Illness or Deviance?, Jennifer Murphy investigates the various perspectives on addiction, and how society has myriad ways of handling it—incarcerating some drug users while putting others in treatment.
Illness or Deviance? highlights the confusion and contradictions about labeling addiction. Murphy’s fieldwork in a drug court and an outpatient drug treatment facility yields fascinating insights, such as how courts and treatment centers both enforce the “disease” label of addiction, yet their management tactics overlap treatment with “therapeutic punishment.” The “addict" label is a result not just of using drugs, but also of being a part of the drug lifestyle, by selling drugs. In addition, Murphy observes that drug courts and treatment facilities benefit economically from their cooperation, creating a very powerful institutional arrangement.
Murphy contextualizes her findings within theories of medical sociology as well as criminology to identify the policy implications of a medicalized view of addiction.
The popular narrative of "globesity" posits that the adoption of Western diets is intensifying obesity and diabetes in the Global South and that disordered metabolisms are the embodied consequence of globalization and excess. In Metabolic Living Harris Solomon recasts these narratives by examining how people in Mumbai, India, experience the porosity between food, fat, the body, and the city. Solomon contends that obesity and diabetes pose a problem of absorption between body and environment. Drawing on ethnographic fieldwork carried out in Mumbai's home kitchens, metabolic disorder clinics, food companies, markets, and social services, he details the absorption of everything from snack foods and mangoes to insulin, stress, and pollutants. As these substances pass between the city and the body and blur the two domains, the onset and treatment of metabolic illness raise questions about who has the power to decide what goes into bodies and when food means life. Evoking metabolism as a condition of contemporary urban life and a vital political analytic, Solomon illuminates the lived predicaments of obesity and diabetes, and reorients our understanding of chronic illness in India and beyond.
Bringing together historians of science and medicine with environmental historians, and adding more contemporary vantage points from geography, anthropology, and sociology, Osiris Volume 19: Landscapes of Exposure offers an unprecedented interdisciplinary depiction of how, over the nineteenth and twentieth centuries, scientists and lay people have generated methods for connecting health and place, disease and ecology, calculation and risk.
How do we balance individual and collective responsibility for illness? This question, which continues to resonate today, was especially pressing in colonial America, where episodic bouts of sickness were pervasive, chronic ails common, and epidemics all too familiar.
In The Province of Affliction, Ben Mutschler explores the surprising roles that illness played in shaping the foundations of New England society and government from the late seventeenth century through the early nineteenth century. Considered healthier than residents in many other regions of early America, and yet still riddled with disease, New Englanders grappled steadily with what could be expected of the sick and what allowances made to them and their providers. Mutschler integrates the history of disease into the narrative of early American cultural and political development, illuminating the fragility of autonomy, individualism, and advancement in this period. Each sickness in early New England created its own web of interdependent social relations that could both enable survival and set off a long bureaucratic struggle to determine responsibility for the misfortune. From families and households to townships, colonies, and states, illness both defined and strained the institutions of the day, bringing people together in the face of calamity, yet also driving them apart when the cost of persevering grew overwhelming. In the process, domestic turmoil circulated through the social and political world to permeate the very bedrock of early American civic life.
This is a provocative look at writing by and about people with illness or disability—in particular HIV/AIDS, breast cancer, deafness, and paralysis—who challenge the stigmas attached to their conditions by telling their lives in their own ways and on their own terms. Discussing memoirs, diaries, collaborative narratives, photo documentaries, essays, and other forms of life writing, G. Thomas Couser shows that these books are not primarily records of medical conditions; they are a means for individuals to recover their bodies (or those of loved ones) from marginalization and impersonal medical discourse.
Responding to the recent growth of illness and disability narratives in the United States—such works as Juliet Wittman’s Breast Cancer Journal, John Hockenberry’s Moving Violations, Paul Monette’s Borrowed Time: An AIDS Memoir, and Lou Ann Walker’s A Loss for Words: The Story of Deafness in a Family—Couser addresses questions of both poetics and politics. He examines why and under what circumstances individuals choose to write about illness or disability; what role plot plays in such narratives; how and whether closure is achieved; who assumes the prerogative of narration; which conditions are most often represented; and which literary conventions lend themselves to representing particular conditions. By tracing the development of new subgenres of personal narrative in our time, this book explores how explicit consideration of illness and disability has enriched the repertoire of life writing. In addition, Couser’s discussion of medical discourse joins the current debate about whether the biomedical model is entirely conducive to humane care for ill and disabled people.
With its sympathetic critique of the testimony of those most affected by these conditions, Recovering Bodies contributes to an understanding of the relations among bodily dysfunction, cultural conventions, and identity in contemporary America.
Contemporary health care often lacks generosity of spirit, even when treatment is most efficient. Too many patients are left unhappy with how they are treated, and too many medical professionals feel estranged from the calling that drew them to medicine. Arthur W. Frank tells the stories of ill people, doctors, and nurses who are restoring generosity to medicine—generosity toward others and to themselves.
The Renewal of Generosity evokes medicine as the face-to-face encounter that comes before and after diagnostics, pharmaceuticals, and surgeries. Frank calls upon the Roman emperor Marcus Aurelius, philosopher Emmanuel Levinas, and literary critic Mikhail Bakhtin to reflect on stories of ill people, doctors, and nurses who transform demoralized medicine into caring relationships. He presents their stories as a source of consolation for both ill and professional alike and as an impetus to changing medical systems. Frank shows how generosity is being renewed through dialogue that is more than the exchange of information. Dialogue is an ethic and an ideal for people on both sides of the medical encounter who want to offer more to those they meet and who want their own lives enriched in the process.
The Renewal of Generosity views illness and medical work with grace and compassion, making an invaluable contribution to expanding our vision of suffering and healing.
Marli F. Wiener skillfully integrates the history of medicine with social and intellectual history in this study of how race and sex complicated medical treatment in the antebellum South. Sex, Sickness, and Slavery argues that Southern physicians' scientific training and practice uniquely entitled them to formulate medical justification for the imbalanced racial hierarchies of the period. Challenged with both helping to preserve the slave system (by acknowledging and preserving clear distinctions of race and sex) and enhancing their own authority (with correct medical diagnoses and effective treatment), doctors sought to understand bodies that did not necessarily fit into neat dichotomies or agree with suggested treatments.
Focusing on Southern states from Virginia to Alabama, Weiner examines medical and lay perspectives on the body through a range of sources, including medical journals, notes, diaries, daybooks, and letters. These personal and revealing sources show how physicians, medical students, and patients--both free whites and slaves--felt about vulnerability to disease and mental illnesses, how bodily differences between races and sexes were explained, and how emotions, common sense, working conditions, and climate were understood to have an effect on the body.
Physicians' authority did not go uncontested, however. Weiner also describes the ways in which laypeople, both black and white, resisted medical authority, clearly refusing to cede explanatory power to doctors without measuring medical views against their own bodily experiences or personal beliefs. Expertly drawing the dynamic tensions during this period in which Southern culture and the demands of slavery often trumped science, Weiner explores how doctors struggled with contradictions as medicine became a key arena for debate over the meanings of male and female, sick and well, black and white, North and South.
Duke University Press is pleased to announce the second edition of the bestselling Social Medicine Reader. The Reader provides a survey of the challenging issues facing today’s health care providers, patients, and caregivers by bringing together moving narratives of illness, commentaries by physicians, debates about complex medical cases, and conceptually and empirically based writings by scholars in medicine, the social sciences, and the humanities. The first edition of The Social Medicine Reader was a single volume. This significantly revised and expanded second edition is divided into three volumes to facilitate use by different audiences with varying interests.
Praise for the 3-volume second edition of The Social Medicine Reader: “A superb collection of essays that illuminate the role of medicine in modern society. Students and general readers are not likely to find anything better.”—Arnold S. Relman, Professor Emeritus of Medicine and Social Medicine, Harvard Medical School
Praise for the first edition: “This reviewer strongly recommends The Social Medicine Reader to the attention of medical educators.”—Samuel W. Bloom, JAMA: The Journal of the American Medical Association
A woman with what is quite probably a terminal illness must choose between courses of treatment based on contradictory diagnoses. A medical student causes acute pain in his patients as he learns to insert a central line. One doctor wonders how to react when a patient asks him to pray with her; another struggles to come to terms with his mistakes. A physician writes in a prominent medical journal about facilitating a dying woman’s wish to end her life on her own terms; letters to the editor reflect passionate responses both in support of and in opposition to his actions. These experiences and many more are vividly rendered in Patients, Doctors, and Illness, which brings together nineteen pieces that appeared in the first edition of The Social Medicine Reader and eighteen pieces new to this edition. This volume examines the roles and training of health care professionals and their relationship with patients, ethics in health care, and end-of-life experiences and decisions. It includes fiction and nonfiction narratives and poetry; definitions and case-based discussions of moral precepts in health care, such as truth telling, informed consent, privacy, and autonomy; and readings that provide legal, ethical, and practical perspectives on many familiar but persistent ethical and social questions raised by illness and care.
Contributors: Yehuda Amichai, Marcia Angell, George J. Annas, Marc D. Basson, Doris Betts, Amy Bloom, Abenaa Brewster, Raymond Carver, Eric J. Cassell, Larry R. Churchill, James Dickey, Gerald Dworkin, James Dwyer, Miles J. Edwards, Charles R. Feldstein, Chris Feudtner, Leonard Fleck, Arthur Frank, Benjamin Freedman, Atul Gawande, Jerome Groopman, Lawrence D. Grouse, David Hilfiker, Nancy M. P. King, Perri Klass, Melvin Konner, Bobbie Ann Mason, Steven H. Miles, Sharon Olds, Katha Pollitt, Timothy E. Quill, David Schenck, Daniel Shapiro, Susan W. Tolle, Alice Stewart Trillin, William Carlos Williams
Some babies and toddlers in parts of West Africa are considered spirit children—nonhumans sent from the forest to cause misfortune and destroy the family. These are usually deformed or ailing infants, or children whose births coincide with tragic events or who display unusual abilities. Aaron R. Denham offers a nuanced ethnographic study of this phenomenon in Northern Ghana that examines both the motivations of the families and the structural factors that lead to infanticide. He also turns the lens on the prevailing misunderstandings about this controversial practice. Denham offers vivid accounts of families’ life-and-death decisions that engage the complexity of the context, local meanings, and moral worlds of those confronting a spirit child.
An important contribution to medical anthropology, this work defines the principal causes if illness that are reported throughout the world, distinguishing those involving natural causation from the more widely prevalent hypotheses advancing supernatural explanations.
Creative expression inspired by disease has been criticized as a celebration of victimhood, unmediated personal experience, or just simply bad art. Despite debate, however, memoirs written about illness—particularly AIDS or cancer—have proliferated since the late twentieth century and occupy a highly influential place on the cultural landscape today.
In Treatments, Lisa Diedrich considers illness narratives, demonstrating that these texts not only recount and interpret symptoms but also describe illness as an event that reflects wider cultural contexts, including race, gender, class, and sexuality. Diedrich begins this theoretically rigorous analysis by offering examples of midcentury memoirs of tuberculosis. She then looks at Susan Sontag’s Illness As Metaphor, Audre Lorde’s The Cancer Journals, and Eve Kosofsky Sedgwick’s “White Glasses,” showing how these breast cancer survivors draw on feminist health practices of the 1970s and also anticipate the figure that would appear in the wake of the AIDS crisis in the 1980s—the “politicized patient.” She further reveals how narratives written by doctors Abraham Verghese and Rafael Campo about treating people with AIDS can disrupt the doctor–patient hierarchy, and she explores practices of witnessing that emerge in writing by Paul Monette and John Bayley.
Through these records of intensely personal yet universal experience, Diedrich demonstrates how language both captures and fails to capture these “scenes of loss” and how illness narratives affect the literary, medical, and cultural contexts from which they arise. Finally, by examining the ways in which the sick speak and are spoken for, she argues for an ethics of failure—the revaluation of loss as creating new possibilities for how we live and die.
Lisa Diedrich is assistant professor of women’s studies at Stony Brook University.
Wisdom Won from Illness
Jonathan Lear Harvard University Press, 2017 Library of Congress BF175.4.P45L434 2017 | Dewey Decimal 150.195
Can reason absorb the psyche’s nonrational elements into a conception of the fully realized human being? Without a good answer to that question, Jonathan Lear says, philosophy is cut from its moorings in human life. He brings into conversation psychoanalysis and moral philosophy, which together form a basis for ethical thought about how to live.
In At the Will of the Body, Arthur Frank told the story of his own illnesses, heart attack and cancer. 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.
Since it was first published in 1995, The Wounded Storyteller has occupied a unique place in the body of work on illness. Both the collective portrait of a so-called “remission society” of those who suffer from some type of illness or disability and a cogent analysis of their stories within a larger framework of narrative theory, Arthur W. Frank’s book has reached a large and diverse readership including the ill, medical professionals, and scholars of literary theory.
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 disabilities. Their stories are more than accounts of personal suffering: they abound with moral choices and point to a social ethic.
In this new edition Frank adds a preface describing the personal and cultural times when the first edition was written. His new afterword extends the book’s argument significantly, writing about storytelling and experience, other modes of illness narration, and a version of hope that is both realistic and aspirational. Reflecting on both his own life during the creation of the first edition and the conclusions of the book itself, Frank reminds us of the power of storytelling as way to understanding our own suffering.