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The Social Medicine Reader, Volume II, Third Edition: Differences and Inequalities, Volume 2 - Softcover

 
9781478002826: The Social Medicine Reader, Volume II, Third Edition: Differences and Inequalities, Volume 2

Inhaltsangabe

The extensively updated and revised third edition of the bestselling Social Medicine Reader provides a survey of the challenging issues facing today's health care providers, patients, and caregivers with writings by scholars in medicine, the social sciences, and the humanities.

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Über die Autorin bzw. den Autor

Jonathan Oberlander is Professor and Chair of Social Medicine and Professor of Health Policy and Management at the University of North Carolina, Chapel Hill.

Mara Buchbinder is Associate Professor of Social Medicine and Adjunct Associate Professor of Anthropology at the University of North Carolina, Chapel Hill.

Larry R. Churchill is Professor of Medical Ethics Emeritus at Vanderbilt University.

Sue E. Estroff is Professor of Social Medicine and Adjunct Professor of Anthropology and Psychiatry at the University of North Carolina, Chapel Hill.

Nancy M. P. King is Professor in the Department of Social Sciences and Health Policy at Wake Forest School of Medicine.

Barry F. Saunders is Associate Professor of Social Medicine and holds adjunct appointments in Anthropology, Religious Studies, and Communication Studies at the University of North Carolina, Chapel Hill.

Ronald P. Strauss is Dental Friends Distinguished Professor of Dental Ecology and Professor of Social Medicine at the University of North Carolina, Chapel Hill.

Rebecca L. Walker is Professor of Social Medicine, Core Faculty in the Center for Bioethics, and holds an adjunct appointment in the Department of Philosophy, at the University of North Carolina, Chapel Hill.

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The Social Medicine Reader Volume 2

Differences and Inequalities

By Jonathan Oberlander, Mara Buchbinder, Larry R. Churchill, Sue E. Estroff, Nancy M. P. King, Barry F. Saunders, Ronald P. Strauss, Rebecca L. Walker

Duke University Press

Copyright © 2019 Duke University Press
All rights reserved.
ISBN: 978-1-4780-0282-6

Contents

PREFACE TO THE THIRD EDITION,
Introduction,
Social and Cultural Contributions to Health, Differences, and Inequalities Sue E. Estroff and Gail E. Henderson,
PART I. Defining and Experiencing Differences,
Beyond Medicalisation Nikolas Rose,
On Being a Cripple Nancy Mairs,
What You Mourn Sheila Black,
Physicians' Juries for Defective Babies Helen Keller,
Blind, Deaf, and Pro-Eugenics: Helen Keller's Advice in Context Raúl Necochea López,
Tell Me, Tell Me Irving Kenneth Zola,
Instructions to Hearing Persons Desiring a Deaf Man Raymond Luczak,
I Have Diabetes. Am I to Blame? Rivers Solomon,
PART II. Sickness amid Relationships,
Twisted Lies: My Journey in an Imperfect Body Sherri G. Morris,
Raising a Woman Mary Stainton,
The Sick Wife Jane Kenyon,
The Loneliness of the Long-Term Care Giver Carol Levine,
Fathers and Sons David Mason,
Parents Support Group Dick Allen,
PART III. Social Factors and Inequalities,
"Doctors Don't Know Anything": The Clinical Gaze in Migrant Health Seth M. Holmes,
Anthropology in the Clinic: The Problem of Cultural Competency and How to Fix It Arthur Kleinman and Peter Benson,
Beyond Cultural Competence: Applying Humility to Clinical Settings Linda M. Hunt,
The Racist Patient Sachin H. Jain,
The Social Determinants of Health: Coming of Age Paula Braveman, Susan Egerter, and David R. Williams,
Structural Violence and Clinical Medicine Paul E. Farmer, Bruce Nizeye, Sara Stulac, and Salmaan Keshavjee,
Structural Competency Meets Structural Racism: Race, Politics, and the Structure of Medical Knowledge Jonathan M. Metzl and Dorothy E. Roberts,
Racial Categories in Medical Practice: How Useful Are They? Lundy Braun, Anne Fausto-Sterling, Duana Fullwiley, Evelynn M. Hammonds, Alondra Nelson, William Quivers, Susan M. Reverby, and Alexandra E. Shields,
Taking Race Out of Human Genetics: Engaging a Century-Long Debate about the Role of Race in Science Michael Yudell, Dorothy Roberts, Rob DeSalle, and Sarah Tishkoff,
Structural Racism and Health Inequities in the United States of America: Evidence and Interventions Zinzi D. Bailey, Nancy Krieger, Madina Agénor, Jasmine Graves, Natalia Linos, and Mary T. Bassett,
America's Hidden HIV Epidemic Linda Villarosa,
Is the Prescription Opioid Epidemic a White Problem? Helena Hansen and Julie Netherland,
Understanding Associations between Race, Socioeconomic Status, and Health: Patterns and Prospects David R. Williams, Naomi Priest, and Norman Anderson,
Can Disparities Be Deadly? Controversial Research Explores Whether Living in an Unequal Society Can Make People Sick Emily Underwood,
Religion and Global Health Peter J. Brown,
PART IV. Politics, Institutions, and Care,
Thinking through the Pain Keith Wailoo,
Unfinished Journey: The Struggle over Universal Health Insurance in the United States Jonathan Oberlander,
On Incarceration and Health: Reframing the Discussion Rahul Vanjani,
Bioexpectations: Life Technologies as Humanitarian Goods Peter Redfield,
ABOUT THE EDITORS,
INDEX,


CHAPTER 1

Beyond Medicalisation

Nikolas Rose


Medicalisation has become a cliché of critical social analysis. It implies something suspect when a problem is created or annexed, in whole or in part, by the apparatus of medicine. Critiques of the ways in which doctors have extended their empire have become part of everyday and professional debate. Such critiques have contributed to the partial deprofessionalisation of medicine. Nowadays, the power of doctors is constrained by the shadow of the law, the apparatus of bioethics, evidence-based medicine, and patients' demands for autonomy to be respected, their rights to health satisfied, their injuries compensated. The focus of critique has turned to the methods used by drug companies in search of markets and profits. There is, no doubt, much to criticise. Yet medicalisation has had an even more profound effect on our forms of life: it has made us what we are.

Since at least the eighteenth century in developed countries, medicine played a constitutive part in "making up people." It was in part through medicine that the human being became a possible object for positive knowledge — a living individual whose body and mind could be understood by scientific reason. Medicine was perhaps the first scientific knowledge to become expertise, in which authority over human beings derived from claims to scientificity. Medicine was entwined with new ways of governing people, individually and collectively, in which medical experts in alliance with political authorities tried to manage ways of living to minimise disease and promote individual and collective health. Medicine was linked to the secularisation of ethical regimes, as individuals came to describe themselves in the languages of health and illness, question themselves against criteria of normality and pathology, take themselves and their mortal existence as circumscribing their values. The history of medicine has thus been bound up with the history of the different ways in which human beings have tried to make ourselves better than we are.

Immediately two cautions must be entered. The "we" needs unpacking by age, class, race, nationality, sex, and more: some people are more medically made up than others — women more than men, the wealthy differently from the poor, children more than adults, and, of course, differently in different countries and regions of the world. Furthermore, medicine itself needs to be decomposed. The technologies of the operating theatre are not those of general practice, or epidemiology, or public health medicine, or health promotion. Medicine has no essence, be it epistemological (there is no single medical model), political (the power of medicine cannot be reduced to social control or the management of social problems), or patriarchal (medicine and medics do not merely seek control over women and their bodies). Medicine is not a single entity: clinical medicine is only one component among many ways in which individual and group life have been problematized from the point of view of health. And medical knowledge, medical experts, and medical practices play very different parts in different locales and practices. Here I distinguish three dimensions through which medicalisation has made us the kinds of people that we are.


Medical Forms of Life

The practices of medicine have modified the very life form that is the contemporary human being. Sewage systems, regulated cemeteries, purified water and food, dietary advice, and the general sanitisation of human existence, domestic life, public space, working environments, all in part under the aegis of medical authority, have altered physical appearance — height, weight, posture, capacities — longevity, morbidity, and much more. These practices have changed the relations that human beings have with their companion species of bacteria, viruses, parasites, scavengers, etc. The practice of vaccination — hybridising human beings with dead or deactivated bacteria — has transformed human sociality; saved millions of lives; and contributed to the growth of the population, the possibility of living in towns, and hence urban sociality. The school and the home, transformed by medicine into hygienic machines, have inculcated habits and manners that have become automatic, from table manners to toothbrush drill. Practices for defecation, urination, menstruation, etc., have produced bodies that are disciplined in relation to health in unprecedented ways. Medical management of sexuality has reshaped regimes of pleasure, practices of intercourse, continence, and incontinence. And so on. We relate to ourselves and others, individually and collectively, through an ethic and in a form of life that is inextricably associated with medicine in all its incarnations. In this sense, medicine has done much more than define, diagnose, and treat disease — it has helped make us the kinds of living creatures that we have become at the start of the twenty-first century.


Medical Meaning

Medicine is inextricably intertwined with the ways in which we experience and give meaning to our world. Whether through medical themes in literature, medical images in art, medical heroes and villains in movies or on TV, medical narratives of patienthood, the imagination of those of us who live in developed countries has become permeated with medicine. This is true for systematic knowledge as much as for popular culture. Many of the theories of society that emerged at the end of the nineteenth century and through much of the twentieth century — from Durkheim to Parsons — understood societies themselves in medical terms, as organic systems whose institutions and processes performed vital functions for the health of the whole. Still today, economies are sick and can be cured, the UK was "the sick man of Europe," racism infects the body politic, etc. The relation between the metaphor and its referent is bidirectional: cancer partakes of the malign character of racism at the same moment that racism is described as cancerous. As lay systems of meaning have become bound up with medical thought, medical languages, no matter how technical, have become infused with cultural meanings. Medicine thus makes us what we are by reshaping the relations of meaning through which we experience our worlds.


Medical Expertise

Medicine also makes us what we are through the role of medical expertise in governing the ways we conduct our lives. We might believe that the limits of medicine should be circumscribed by illness, disease, or pathology; that medical authority properly applies where the natural norms of the body have been disturbed by infection, injury, or some other insult; that the proper role of the doctor is to seek to restore that lost normativity of the body. We might think that if medical authority goes beyond these limits it runs the risk of illegitimacy. But this belief would be mistaken. Doctors have long engaged with collective as well as individual bodies. Since the start of the nineteenth century, perhaps earlier, doctors were involved in the mapping of disease in social space, collection of statistics on the illnesses of the population, design of sewers, town planning, regulation of foodstuffs and cemeteries and much more — indeed doctors have a good claim to be the first social scientists. From at least the mid-nineteenth century, medical concerns embraced not just illness, but health and all that was thought to be conducive to it. And doctors have long been called on to exercise authority beyond therapy; to childbirth, infertility, sexual mores and practices, aspects of criminal behaviour, alcoholism, abnormal behaviour, anxiety, stress, dementia, old age, death, grief, and mourning. Nowadays, there are many examples of such extension of medical expertise to the management of life itself, from new reproductive technologies, through hormone replacement therapy and treatment for age-related sexual dysfunction, to psychopharmaceutical attempts to modify mood, emotion, and volition. The division of the natural and the cultural has ceased to do useful analytical work. Medicine has helped make us thoroughly artificial.


Beyond Medicalisation

The theme of medicalisation, implying the extension of medical authority beyond a legitimate boundary, is not much help in understanding how, why, or with what consequences these mutations have occurred. Medicalisation might be a useful neutral term to designate issues that were not at one time but have become part of the province of medicine. It might be a useful slogan for those who wish to dispute the legitimacy of that medical remit. But the term itself should not be taken as a description or an explanation, let alone a critique. Not an explanation for there is no dynamic of medicalisation, no implacable logic of medical entrepreneurship, no single motive of medical interests, that lies behind these various boundary renegotiations; not a description, for there are many important distinctions to be made here. The term medicalisation obscures the differences between placing something under the sign of public health (as in the contemporary concern with childhood obesity), placing something under the authority of doctors to prescribe, even though not treating a disease (as in the dispensing of contraceptive pills to regulate normal fertility), and placing something within the field of molecular psychopharmacology (as in the prescription of drugs to alleviate feelings that would once have been aspects of everyday unhappiness). Nor does medicalisation help as critique, for why should it seem ethically or politically preferably to live one aspect or department of life under one description rather than another? The term medicalisation might be the starting point of an analysis, a sign of the need for an analysis, but it should not be the conclusion of an analysis.


Assembling Forms of Life

Medicalisation implies passivity on the part of the medicalised. One example is when people claim that disease-awareness campaigns persuade potential customers to "recode" their unease and dissatisfaction in the form of a diagnostic category to extend the market for pharmaceutical products and the remit of medical practitioners. With notable exceptions (children, prisoners, people deemed mentally ill and admitted to hospital under compulsion), doctors do not force diagnostic labels on resistant individuals. And although drug companies use techniques of modern marketing, they do not seek to dupe an essentially submissive audience. Marketing techniques, since the 1950s, have not regarded the consumer as a passive object to be manipulated by advertisers, but as someone to be known in detail, whose needs are to be charted, for whom consumption was an activity bound into a form of life that must be understood. Marketing does not so much invent false needs, as suggested by cultural critics, but rather seeks to understand the desires of potential consumers, to affiliate those with their products, and to link these with the habits needed to use those products. It is this process of mutual construction, the intertwining of products, expectations, ethics and forms of life, that we observe in the development and spread of psychiatric drugs such as those for depression. This process is not a brute attempt to impose a way of recoding miseries, but the creation of delicate affiliations between subjective hopes and dissatisfactions and the alleged capacities of the drug. Such a medicalisation of sadness can occur only within a political economy of subjectification, a public habitat of images of the good life for identification, a plurality of pedagogies of everyday existence, which display, in meticulous if banal detail, the ways of conducting oneself that make possible a life that is personally pleasurable and socially acceptable. In engaging with these formulae in inventive ways, individuals play their own part in the spread of the diagnosis of depression and shaping new conceptions of the self.

Thus, beyond medicalisation, medicine has shaped our ethical regimes, our relations with ourselves, our judgments of the kinds of people we want to be, and the lives we want to lead. But if medicine has been fully engaged in making us the kinds of people we have become, this is not in itself grounds for critique. Critical evaluation of these heterogeneous developments is essential. But we need more refined conceptual methods and criteria of judgment to assess the costs and benefits of our thoroughly medical form of life — and of those that offer themselves as alternatives.

CHAPTER 2

On Being a Cripple

Nancy Mairs


To escape is nothing. Not to escape is nothing.

— LOUISE BOGAN


The other day I was thinking of writing an essay on being a cripple. I was thinking hard in one of the stalls of the women's room in my office building, as I was shoving my shirt into my jeans and tugging up my zipper. Preoccupied, I flushed, picked up my book bag, took my cane down from the hook, and unlatched the door. So many movements unbalanced me, and as I pulled the door open I fell over backward, landing fully clothed on the toilet seat with my legs splayed in front of me: the old beetle-on-its-back routine. Saturday afternoon, the building deserted, I was free to laugh aloud as I wriggled back to my feet, my voice bouncing off the yellowish tiles from all directions. Had anyone been there with me, I'd have been still and faint and hot with chagrin. I decided that it was high time to write the essay.

First, the matter of semantics. I am a cripple. I choose this word to name me. I choose from among several possibilities, the most common of which are "handicapped" and "disabled." I made the choice a number of years ago, without thinking, unaware of my motives for doing so. Even now, I'm not sure what those motives are, but I recognize that they are complex and not entirely flattering. People — crippled or not — wince at the word "cripple," as they do not at "handicapped" or "disabled." Perhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates/gods/viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger.

But, to be fair to myself, a certain amount of honesty underlies my choice. "Cripple" seems to me a clean word, straightforward and precise. It has an honorable history, having made its first appearance in the Lindisfarne Gospel in the tenth century. As a lover of words, I like the accuracy with which it describes my condition: I have lost the full use of my limbs. "Disabled," by contrast, suggests any incapacity, physical or mental. And I certainly don't like "handicapped," which implies that I have deliberately been put at a disadvantage, by whom I can't imagine (my God is not a Handicapper General), in order to equalize chances in the great race of life. These words seem to me to be moving away from my condition, to be widening the gap between word and reality. Most remote is the recently coined euphemism "differently abled," which partakes of the same semantic hopefulness that transformed countries from "undeveloped" to "underdeveloped," then to "less developed," and finally to "developing" nations. People have continued to starve in those countries during the shift. Some realities do not obey the dictates of language.

Mine is one of them. Whatever you call me, I remain crippled. But I don't care what you call me, so long as it isn't "differently abled," which strikes me as pure verbal garbage designed, by its ability to describe anyone, to describe no one. I subscribe to George Orwell's thesis that "the slovenliness of our language makes it easier for us to have foolish thoughts." And I refuse to participate in the degeneration of the language to the extent that I deny that I have lost anything in the course of this calamitous disease; I refuse to pretend that the only differences between you and me are the various ordinary ones that distinguish any one person from another. But call me "disabled" or "handicapped" if you like. I have long since grown accustomed to them; and if they are vague, at least they hint at the truth. Moreover, I use them myself. Society is no readier to accept crippledness than to accept death, war, sex, sweat, or wrinkles. I would never refer to another person as a cripple. It is the word I use to name only myself.

I haven't always been crippled, a fact for which I am soundly grateful. To be whole of limb is, I know from experience, infinitely more pleasant and useful than to be crippled; and if that knowledge leaves me open to bitterness at my loss, the physical soundness I once enjoyed (though I did not enjoy it half enough) is well worth the occasional stab of regret. Though never any good at sports, I was a normally active child and young adult. I climbed trees, played hopscotch, jumped rope, skated, swam, rode my bicycle, sailed. I despised team sports, spending some of the wretchedest afternoons of my life, sweaty and humiliated, behind a field hockey stick and under a basketball hoop. I tramped alone for miles along the bridle paths that webbed the woods behind the house I grew up in. I swayed through countless dim hours in the arms of one man or another under the scattered shot of light from mirrored balls, and gyrated through countless more as Tab Hunter and Johnny Mathis gave way to the Rolling Stones, Creedence Clearwater Revival, Cream. I walked down the aisle. I pushed baby carriages, changed tires in the rain, marched for peace.


(Continues...)
Excerpted from The Social Medicine Reader Volume 2 by Jonathan Oberlander, Mara Buchbinder, Larry R. Churchill, Sue E. Estroff, Nancy M. P. King, Barry F. Saunders, Ronald P. Strauss, Rebecca L. Walker. Copyright © 2019 Duke University Press. Excerpted by permission of Duke University Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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