The Social Medicine Reader, Volume II, Third Edition: Differences and Inequalities, Volume 2 9781478004363

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the social medicine reader Volume 2, Third Edition

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the social medicine reader volume

2

third edition

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

Duke University Press ​·  ​D urham and London ​·  ​2 019

© 2019 Duke University Press All rights reserved Printed in the United States of Amer­i­ca on acid-­free paper ∞ Designed by Matthew Tauch Typeset in Minion Pro by Westchester Publishing Ser­vices Library of Congress Cataloging-­in-­Publication Data Names: Oberlander, Jonathan, editor. Title: The social medicine reader / Jonathan Oberlander, Mara Buchbinder, Larry R. Churchill, Sue E. Estroff, Nancy M. P. King, Barry F. Saunders, Ronald P. Strauss, Rebecca L. Walker, editors. Description: Third edition. | Durham : Duke University Press, 2019– | Includes bibliographical references and index. Identifiers: lccn 2018044276 (print) lccn 2019000395 (ebook) isbn 9781478004363 (ebook) isbn 9781478001744 isbn 9781478001744 (v. 2 ; hardcover ; alk. paper) isbn 9781478002826 (v. 2 ; pbk. ; alk. paper) Subjects: lcsh: Social medicine. Classification: lcc ra418 (ebook) | lcc ra418 .s6424 2019 (print) | ddc 362.1—dc23 lc record available at https://lccn.loc.gov/2018044276

Contents

ix

preface to the third edition

1 Introduction 3

Social and Cultural Contributions to Health, Differences, and Inequalities Sue E. Estroff and Gail E. Henderson

part i. Defining and Experiencing Differences 31

Beyond Medicalisation Nikolas Rose

37

On Being a Cripple Nancy Mairs

48

What You Mourn Sheila Black

50

Physicians’ Juries for Defective Babies Helen Keller

52

Blind, Deaf, and Pro-­Eugenics: Helen Keller’s Advice in Context Raúl Necochea López

54

Tell Me, Tell Me Irving Kenneth Zola

61

Instructions to Hearing Persons Desiring a Deaf Man Raymond Luczak

62

Contents

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I Have Diabetes. Am I to Blame? Rivers Solomon

part ii. Sickness amid Relationships 67

Twisted Lies: My Journey in an Imperfect Body Sherri G. Morris

78

Raising a ­Woman Mary Stainton

83

The Sick Wife Jane Kenyon

84

The Loneliness of the Long-­Term Care Giver Carol Levine

92 ­Fathers and Sons David Mason 93

Parents Support Group Dick Allen

part iii. Social ­Factors and Inequalities 97

“Doctors ­Don’t Know Anything”: The Clinical Gaze in Mi­grant Health Seth M. Holmes

116

Anthropology in the Clinic: The Prob­lem of Cultural Competency and How to Fix It Arthur Kleinman and Peter Benson

127

Beyond Cultural Competence: Applying Humility to Clinical Settings Linda M. Hunt

132

The Racist Patient Sachin H. Jain

134

The Social Determinants of Health: Coming of Age Paula Braveman, Susan Egerter, and David R. Williams

156

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

188

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

204

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

209

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

235

Amer­i­ca’s Hidden HIV Epidemic Linda Villarosa

254

Is the Prescription Opioid Epidemic a White Prob­lem? Helena Hansen and Julie Netherland

258

Understanding Associations between Race, Socioeconomic Status, and Health: Patterns and Prospects David R. Williams, Naomi Priest, and Norman Anderson

268

Can Disparities Be Deadly? Controversial Research Explores ­Whether Living in an Unequal Society Can Make ­People Sick Emily Underwood

275

Religion and Global Health Peter J. Brown

part iv. Politics, Institutions, and Care 297

Thinking through the Pain Keith Wailoo

Contents

170

vii

305

Unfinished Journey: The Strug­gle over Universal Health Insurance in the United States Jonathan Oberlander

314

On Incarceration and Health: Reframing the Discussion Rahul Vanjani

318

Bioexpectations: Life Technologies as Humanitarian Goods Peter Redfield

341

about the editors

Contents

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343 index

Preface to the Third Edition

The eight editors of this third edition of the Social Medicine Reader include six current and two former members of the Department of Social Medicine in the University of North Carolina (unc) at Chapel Hill School of Medicine. Founded in 1977, the Department of Social Medicine, which includes scholars in medicine, the social sciences, the humanities, and public health, is committed to the promotion and provision of multidisciplinary education, leadership, ser­vice, research, and scholarship at the intersection of medicine and society. This includes a focus on the social conditions and characteristics of patients and populations; the social dimensions of illness; the ethical and social contexts of medical care, institutions, and professions; and resource allocation and health care policy. This two-­volume reader reflects the syllabus of a year-­long, required interdisciplinary course that has been taught to first-­year medical students at UNC since 1978. The goal of the course since its inception has been to demonstrate that medicine and medical practice have a profound influence on—­ and are influenced by—­social, cultural, po­liti­cal, and economic ­matters. Teaching this perspective requires integrating medical and nonmedical materials and viewpoints. Therefore, this reader incorporates pieces from many fields within medicine, the social sciences, and humanities, representing the most engaging, provocative, and informative materials and issues we have traversed with our students. Medicine’s impact on society is multidimensional. Medicine shapes how we think about the most fundamental, enduring ­human experiences—­ conception, birth, maturation, sickness, suffering, healing, aging, and death— as well as the meta­phors we use to express our deepest concerns. Medical practices and social responses to them have helped to redefine the meanings of age, race, and gender. Social forces likewise have a power­ful influence on medicine. Medical knowledge and practice, like all knowledge and practice, are ­shaped by po­liti­ cal, cultural, and economic forces. This includes modern science’s pursuit of knowledge through ostensibly neutral, objective observation and experimentation. Physicians’ ideas about disease—in fact their very definitions of

Preface to the Third Edition

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disease—­depend on the roles that science and scientists play in par­tic­u­lar cultures, as well as on the vari­ous cultures of laboratory and clinical science. Despite the power of the biomedical model of disease and the increasing specificity of molecular and ge­ne­tic knowledge, social f­actors have always influenced the occurrence and course of most diseases. And once disease has occurred, the power of medicine to alter its course is constrained by the larger social, economic, and po­liti­cal contexts. While the origin of t­hese volumes lies in teaching medical students, we believe the se­lections they include w ­ ill resonate with a broader readership from allied health fields, the medical humanities, bioethics, arts and sciences, and the interested public. The many voices represented in t­ hese readings include individual narratives of illness experience, commentaries by physicians, debate about complex medical cases and practices, and conceptually and empirically based scholarly writings. Th ­ ese are readings with the literary and scholarly power to convey the complicated relationships between medicine, health, and society. They do not resolve the most vexing con­temporary issues, but they do illuminate their nuances and complexities, inviting discussion and debate. Repeatedly, the readings throughout t­hese two volumes make clear that much of what we encounter in science, in society, and in everyday and extraordinary lives is indeterminate, ambiguous, complex, and contradictory. And ­because of this inherent ambiguity, the interwoven se­lections highlight conflicts about power and authority, autonomy and choice, and security and risk. By critically analyzing t­ hese and many other related issues, we can open up possibilities, change what may seem inevitable, and practice professional training and caregiving with an increased capacity for reflection and self-­ examination. The goal is to ignite and fuel the inner voices of social and moral analy­sis among health care professionals, and among us all. Any scholarly anthology is open to challenges about what has been included and what has been left out. This collection is no exception. The study of medicine and society is dynamic, with large and ever-­expanding bodies of lit­er­a­ture from which to draw. We have omitted some readings widely considered to be “classics” and have included some readings that are exciting and new—­that we believe have an indelible impact. We have chosen to include material with literary and scholarly merit and that has worked well in the classroom, provoking discussion and engaging readers’ imaginations. ­These readings invite critical examination, a ­labor of reading and discussion that is inherently difficult but educationally rewarding.

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Preface to the Third Edition

Volume 1, Ethics and Cultures of Biomedicine, examines experiences of illness; the roles and training of health care professionals and their relationships with patients; institutional cultures of bioscience and medicine; health care ethics; death and ­dying; and resource allocation and justice. Volume 2, Differences and Inequalities, explores health and illness, focusing on how difference and disability are defined and experienced in con­temporary Amer­ i­ca and how social categories commonly used to predict disease outcomes—­ gender, race/ethnicity, and social class—­shape health outcomes and medical care. We thank our teaching colleagues who helped create and refine all three editions of this reader. Th ­ ese colleagues have come over the years from both within and outside the Department of Social Medicine and the University of North Carolina at Chapel Hill. Equal gratitude goes to our students, whose criticism and enthusiasm over four de­cades have improved our teaching and have influenced us greatly in making the se­lections for the reader. We thank the Department’s faculty and staff, past and pres­ent; students and colleagues from Vanderbilt University School of Medicine and Wake Forest School of Medicine have similarly been instrumental. We especially thank Kathy Crosier, the course coordinator for our first-­year class, who assisted with the preparation of the Reader. The editors gratefully acknowledge support from the Department of Social Medicine, University of North Carolina at Chapel Hill School of Medicine; the Center for Biomedical Ethics and Society, Vanderbilt University School of Medicine; and the Center for Bioethics, Health, and Society, Wake Forest University.

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Introduction

The se­lections that comprise volume 2 of the Social Medicine Reader introduce the fundamental sociocultural dimensions of health differences and inequalities. ­These include social and cultural shaping of the meanings of health, illness, and disease; social ­factors in the development of biomedical knowledge and systems of care; and structural explanations for why some social groups experience disproportionate burdens of disease and differences in care. Disease occurs, is felt, within a body, but it is also experienced beyond the body, in a cultural milieu, amid social relationships. When individuals who belong to par­tic­u­lar social groups have higher rates of disease, epidemiologists seek to explain ­these variations via risk ­factors. Yet concepts of disease and risk themselves reflect culturally specific assumptions about meanings of illness and causation, and about the validity and significance of group labels, including and especially ­those of age, gender, ethnicity, and race. An individual’s experience of illness is best understood in the context of their society and culture. Similarly, explanation of the occurrence of disease through individual exposure or risk ­factors is enriched by broad consideration of the distribution and intensifications of such exposures or risks among families, communities, and social environments. In order to examine social ­factors in health and disease, this second volume of the Social Medicine Reader draws on frameworks and findings from a variety of academic disciplines. Th ­ ese include sociocultural and medical anthropology, sociology, and the social history of medicine and science. Eight editors from diverse scholarly backgrounds have curated a diverse collection of essays, articles, stories, and poems to exemplify and illustrate social influences on health. The se­lections consist of empirical, conceptual, and literary materials about sociocultural markers such as gender, race, ethnicity, economic disadvantage, social status, religious affiliations, and associated differences and inequalities in health. Many of the se­lections have been used successfully as bases for discussion in medical school curricula and in undergraduate and gradu­ate courses and can be adapted to fit courses and students in science, social science, and the humanities.

Introduction

2

The readings in part I of this volume explore how vari­ous disabilities and other differences from bodily or behavioral norms are experienced and defined in Amer­i­ca. Narratives of managing illness and disablement in a day or a lifetime contribute to textured biographical understandings of such differences. ­These accounts can challenge presumptions of sameness among ­people who are profoundly dif­fer­ent, and presumptions of difference between the disabled and the “temporarily-­abled” by bringing to the foreground unrecognized commonalities. Several se­lections address the roles of medicine and doctors in defining, mitigating, and eliminating differences and disabilities in historical context. In part II of the volume, the focus shifts to ways in which illness, disability, and care are embedded in relationships, especially (but not exclusively) ­family relationships. Reading se­lections portray spouses, parents, and ­children amid tangled emotions, shifting roles, and obligations—­through episodes of care, protection, recrimination, and mourning. Families and communities can intensify vulnerabilities or sustain resiliencies and thereby contribute to disparities in health. Part III of the volume takes up ethnoracial and socioeconomic differences that produce and shape health inequalities. Uneven distributions of material resources, educational opportunities, work exposures, and stresses of discrimination and oppression are power­ ful social determinants of health. Ideologies and inequalities materialized in and enforced by macrosocial structures become embodied in individuals and communities. A substantial cluster of the readings in this part addresses the impor­tant ­matter of race—as a po­liti­cal or scientific construct, as a source of group identity or bias, as a signpost of structural vulnerability or vio­lence. The final section of the volume considers vari­ous institutional contexts of health care, including incarceration, public policy regarding chronic pain management and opioids, and U.S. national efforts ­toward health care reform. It concludes with a glimpse of nongovernmental forms of health care and humanitarian aid in the developing world. The variety of readings in this volume can be addressed from many disciplinary perspectives, teaching styles, and formats. They can be reshuffled and recombined, stand together or alone, or be supplemented by other lit­er­ a­ture. The key to using ­these readings successfully is to approach them with flexibility—to provoke or shape the right questions, rather than give par­tic­ u­lar answers. Our hope is that both teachers and students of materials like ­these ­will go on asking questions and finding dif­fer­ent and deeper answers throughout their lives.

Social and Cultural Contributions to Health, Differences, and Inequalities Sue E. Estroff and Gail E. Henderson

Disease and health, birth and death, bodily suffering and debilitation are not the presumptive territory of laboratory scientists and clinicians in white coats. Scholars from the social sciences and humanities in the fields of social medicine, health humanities, sociomedical and health systems sciences, and structural competence deploy interdisciplinary tools to understand the experiences and meaning of illness, medical training and practice, and the historical, po­liti­cal, and structural, as well as biocultural influences on health status and disease. H ­ ere we introduce under­lying concepts and perspectives foundational to social and cultural approaches to health and illness. The topics at issue are sometimes referred to as social determinants of health. We take the view that identifying and accounting for the complex synergies of the social and biological is an ongoing enterprise—­promising and persuasive, but as yet an incomplete demonstration of causal, determinative certainty. The terrain includes work in medical sociology and anthropology, public health, social epidemiology, and intersectional studies of health disparity and in­equality, disability, science and technology, sexualities, narrative in medicine, gender identity and expression, race and ethnicity, and disability. ­These approaches have in common conceptual frameworks that include the following: • the mutual molding of culture, social and institutional structures, biology, and illness; • distinguishing between, but not detaching, disease as a pathological pro­cess and illness and treatment as lived experience;

Sue E. Estroff and Gail E. Henderson

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• the impact of role expectations on how ­people who are ill or injured are seen by ­others and see themselves; • and the ways that gender identity and expression, sex, socioeconomic status, race, and ethnicity are associated with disease and are indicators of broader economic, po­liti­cal, and cultural forces that influence a person’s health status and exposure to or protection from illness and injury. ­ ere we use exemplars from an array of research and scholarship focused H on the experiences of difference engendered by labels of disability and disease together with in­equality in health status and health care related to social identities such as age, gender, and race, as well as the structural frameworks that define and maintain ­these identities. Sociocultural influences on health and illness are prominent and observable in t­ hese areas, and now epige­ne­tic analy­sis adds empirical documentation of the signature of social circumstances on the molecular as well as the social body (Kirkbride, Jones, Ullrich, and Coid 2014). Shields (2017: 224) describes how “social disadvantage ‘gets ­under the skin’ ”: “We have always known that poverty, child abuse, trauma, air pollution, and other adverse exposures ­were bad for ­people’s health. By shedding light on the biological pathways through which such exposures are translated into concrete, mea­ sur­able increased risk of vari­ous diseases, epigenet­ics research provides a useful tool for refocusing policy makers’ attention back to the communities in which ­people live and work, and the daily quality of their lives that shape their health and ­those of their offspring.”

Basic Concepts

The terms social and cultural are often used together, interchangeably, or as combined into a single word, sociocultural. ­These two words represent dif­ fer­ent disciplinary perspectives and reflect varied definitions, questions, and approaches to research. Increasingly, intersectional social science scholarship in health and illness integrates qualitative and quantitative methods and analytic techniques. In this essay, the term social encompasses selected characteristics of a defined, or­ga­nized group that can range in size from a f­ amily unit to a nation state. The characteristics of interest include: social institutions like families, schools, hospitals, and prisons; local and national po­liti­cal institutions and

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Social and Cultural Contributions to Health

mechanisms of social control and resource allocation; and systems of production, such as private or public owner­ship, manufacturing, agriculture, and the internet. Th ­ ese social institutions and socioeconomic systems structure opportunities that in turn affect health and health care for individual citizens and provide both obstacles and assistance to ­those unable to carry out normal functions due to disease or disability (Hansen, Bourgois, and Drucker 2014). Individuals are also part of social groups, such as religions, gender identities, sexes, social classes, races, and ethnicities; ­these are woven together by systems that reflect differential or hierarchical access to resources of wealth, power, and social status. Social groups may overlap with cultural groups, and when placed u ­ nder scrutiny, many of t­ hese categories have fuzzy edges. Still, ­there are mea­sur­able and enduring differences in disease frequencies and health outcomes between (and within) social groups, however contested the definitions and however complex the reasons for ­these differences may be. Culture can be viewed as an evolving collective product, a negotiable and negotiated template for leading and making sense of daily life. The properties of culture are values, rules, prohibitions, preferences, symbols, meanings, language, locations of power, and practices that guide how everyday life is lived and how extraordinary events are understood. Culture includes definitions of health and illness, life and death, responses to disease and injury, and how pain, discomfort, and disfigurement are experienced. Th ­ ese forms of knowledge are shared among a group of p ­ eople, despite variations among them in interpretation of princi­ples or in practices. Fi­nally, culture is enduring at a fundamental level, but also changing in form and content over time, produced and reproduced by t­hose who learn the rules and apply or alter them in daily living. The idea of culture, as Comaroff and Comaroff (2004: 188) observe, has taken on increasing power as “­peoples across the planet have taken to invoking it, to signifying themselves with reference to it, to investing it with an authority, a determinacy” that some scholars would dispute. Taking such a view can lead to stereotyping, or a cookie-­cutter view of culture—­a belief that it produces identical p ­ eople with identical beliefs within par­tic­ u­lar groups. For example, race and sex-­based ste­reo­types presume that one characteristic, such as darker skin color or a person’s genitalia, play the lead role in defining anyone with that characteristic. Variation and individuality become “exceptions.” In a clinical setting, ste­reo­types can be con­ve­nient but are often inaccurate and can be mistakenly deployed as a form of cultural competence.

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Instead, culture can be understood “less as a sign of racial marking or an alibi for difference than as the description of a more or less open repertoire of styles, a mode of conduct, a set of pragmatic values always u ­ nder re(con)­ struction . . . ​[as] a thoroughgoing qualification to everyday life.” (Comaroff and Comaroff 2004: 198). The evolving vocabularies of gender identity and expression beyond the binary and accounting for race/ethnicity exemplify how emergent repertoires interrupt and reconfigure long-held Western categories and designations of experience and identity. It is helpful to think of culture as agreed-­upon-­enough to contribute to and to sanction recognizably patterned ideas about social categories like gender, age, and social status, and responses to disease, disability, or death.

Culture in Biology, Biology in Culture

Biology and culture do not stand in opposition, the one fixed and the other malleable. The biological, social, and cultural realms are intertwined profoundly. The claim is not that culture includes every­thing, but that nearly ­every part of biological and social life is culturally influenced, that life is cultured. In any locale, for example, the flora that are used for healing, the kind of crops that are grown, and the climate help to shape local customary practices, symbols, and beliefs. In turn, t­ hese customs and beliefs interpret or give symbolic meaning to the weather or food. For example, social hierarchies often determine how protein is distributed within a group—­who gets what kind and amount of food—­which may then influence health status and patterns of disease. Consider the origins and impact of “food deserts” in inner cities, how access to food can be a weapon of war, and the fragile status of school lunch programs in the face of po­liti­cally determined bud­get cuts. For example, access to healthier food is lower in census tracts with predominantly non-­Hispanic black residents than in areas with predominantly non-­Hispanic white residents (CDC 2013). ­These structural pro­cesses reflect both inadvertent and deliberate allocations of resources based on fundamental notions of justice, fairness, and deservedness. Illness is sensate. It is felt in the body through pain, discomfort, and loss or change of function. Illness and injury are embodied—­seen, displayed, apparent to self and to ­others. How we feel, what we feel, what we identify as pain and discomfort and disfigurement are all learned and ­shaped in cultural context. Expected and ideal bodies are ­imagined within cultural par­ameters. The bioengineering of exoskeletons for p ­ eople who cannot

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walk, ­actual bionic limbs that permit their “­owners” to mountain climb or return to the ballet stage, and laboratory-­generated ­human tissue are realities, no longer science fiction. Indeed, t­ hese developments incite discussion of transhumanism or the fusion of biological and mechanical pro­cesses and the expanding meaning of being ­human. We face the possibility, not just the aspiration, of the transhuman body when body parts fail and diseased kidneys are replaced with a lab-­generated, donated, or purchased organ (Hogle 2005). Cosmetic surgery and Botox injections to rid the face of wrinkles, or liposuction to remove body fat, become the means to maintain or achieve new, culturally idealized bodily shape and function over a lifetime. At the same time, t­hese and numerous other intensely marketed body-­enhancing procedures are accessible only to ­those who can afford their purchase, and they contribute to the creation of evolving ideals about physical form, about age-­expected and gender-­ associated bodies that are unequally achievable across populations. This interplay between medical technology and bodily expectations, and their reflection of and contribution to disparities in body possibilities, is an impor­tant arena for the mutual molding of culture and medicine (McNamee and Edwards 2006) in determining the nature of our bodies as “natu­ral biological material” or something altogether dif­fer­ent. Tomasini (2007: 498) alerts us that “at a very minimalistic level of analy­sis, the notion of ­human enhancement already entangles factual claims about how we can better ­humans with value claims about why we should/ought to do so.” Margaret Lock’s (1994) work on aging and menopause in Japan and North Amer­i­ca illustrates the intimate interactions between biology and culture. Lock finds that Japa­nese ­women physically experience menopause differently than American ­women. They do not report the “hot flashes” and emotional liability that Americans do. Rather, their primary sensations include aching joints and other bodily pains. Likewise, Japa­nese and American physicians differ widely in how they approach menopause. Their relationships with patients are embedded in cultural contexts with differing ideas about gender, authority, female biology, and aging. How can it be that Japa­nese ­women experiencing menopause actually feel differently from American ­women? Their aching shoulders are as culturally influenced and as real as are American and Canadian hot flashes, but all the w ­ omen are ­going through the same biological pro­cess. Or are they? The recognition of cultural influences on bodily experience is not confined to the social sciences. An investigator in a large clinical trial studying the impact of hormone replacement therapies on cognitive function (Espe-

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land et al. 2004) was quoted as saying, “The true interpretation of menopause is cessation of menses from decreased production of female hormones. . . . ​ And while, in our culture, it’s often associated with hot flashes and other symptoms, in some other cultures w ­ omen breeze right through it. Th ­ ere may be lots of ­factors ­here. . . . ​It’s not my area of specialty. . . . ​It’s been debated considerably” (Shamp 2004). This example of the inclusion of sociocultural influences on biological events by researchers outside the social sciences demonstrates the expanding application of interdisciplinary findings and perspectives to medicine.

Culture, Health, and Illness

The social and cultural worlds of the twenty-­first ­century United States, its language, ­music, food, and its po­liti­cal figures and forces, are profoundly dif­fer­ent than just half a c­ entury ago, when the idea of an “American culture,” or a dominant white Anglo-­Saxon tradition, was accepted by many as a given and desirable. Demographers predict that around 2044, no race/ ethnic group as defined by the Census ­will have a majority share of the total population, and the United States w ­ ill become a “ ‘plurality’ of racial and ethnic groups” (Colby and Ortman 2015: 9). For the first time since the colonization of the North American continent, no group ­will represent a numerical majority. We ­will become a “majority/minority” nation (Colby and Ortman 2015) wherein non-­Hispanic whites do not represent a majority, though they are projected to remain the largest single group. Taking into account fertility rates and the age structure of vari­ous population groups, the crossover point to a no-­majority population for ­children ­under 18 could occur as soon as 2020. The transformation of the U.S. population’s cultural and race/ethnic legacies and practices ­will have a profound effect on the social epidemiology of health and illness, and thus on health care systems and providers. Members of a dominant culture are inclined to view their own ways as logical and natu­ral, to see “culture” as something that ­others have. We have values or princi­ples, they have beliefs and customs. We have science and knowledge, they have traditions and myths. Yet, Western history, the social history of science and medicine, and the cultural study of health and illness challenge ­these dichotomies. As the United States evolves demographically and culturally, reliance on a dominant cultural repertoire in the domains of health and illness ­will become increasingly precarious, if not ill advised.

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Social and Cultural Contributions to Health

The United States has always been a culturally diverse society, home to Anglo-­Saxon, Slavic, African, Asian, and Mediterranean groups with evident linguistic and cultural bound­aries. Ethnicity and cultural diversity are now center stage in the politics, economy, social life and health care of the twenty-­first ­century. The 2000 Census for the first time allowed respondents to choose more than one race/ethnicity category. The number of ­people who describe themselves as representing two or more races is the fastest growing segment of the U.S. population. In the 2010 Census the number of respondents who considered themselves “multiracial” was 6.9 ­percent of the population. The number of black/white biracial respondents more than doubled, and Asian/white respondents grew 87 ­percent (Pew Research Center 2015). The re-­emerging multicultural and ethnically diverse society of this c­ entury adds to the importance of understanding health, illness, and medical practice as both product and producer of larger social and cultural domains. As much as change is anticipated and often lauded, each age or era develops a sense of inevitability about itself, about its ways and ideas. And so we have about ours, particularly in the ways that we regard knowledge in science and medicine as immutable. Yet, illness categories, both lay and scientific, are, at base, cultural categories and as such change over time. Examining illness categories as evolving cultural constructs leads us to investigate how new diagnoses emerge, expand, or gain unpre­ce­dented prominence among the public or within medicine. The development of Prozac in 1987 spawned a now massive market for antidepressant and other psychotropic drugs that offer the opportunity and demand for enhanced or elevated moods and increased happiness in life. The possibilities for increasing well-­b eing courtesy of psychotropic drugs changed how we view moods and the meaning of sadness and melancholy as part of daily living. Familiar emotions, the blues, and distress are redefined as diseases in order to “treat” ’ them with this and other drugs. This pro­cess is called medicalization. The medicalization move, w ­ hether it involves highly energetic and distractible ­children in school, or sexual approaches that violate individual consent and dignity or that we view as excessive, relocates responsibility and authority—­responsibility migrates from the sensate individual to hidden biopro­cesses, and authority migrates from the secular to the medical/professional. Hansen and colleagues (2014) introduce the concept of the “pathologization of poverty” that “shifted indigent populations to a form of financial support that is increasingly medicalized—­requiring a medical or psychiatric diagnosis to qualify a patient for disability payments.” In this scenario, financial and material needs are legitimated only by a

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clinically verified inability, rather than by undiagnosed socioeconomic deprivations. Medicalization is complicated and multidirectional. As Rose (2007: 702) points out: “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.” The direct marketing of prescription drugs to consumers also influences what and who gets defined as pathological, problematic, and treatable. Th ­ ere are, for example, incessant media invitations to ease the heretofore “normal” aches and pains of aging by renaming them as osteoarthritis—­which can be controlled by a variety of drugs or repaired by surgery. A medical vocabulary replaces social or sensate terminology. A similar dynamic is apparent in the defining and redefining of so-­called attention deficits and hyperactivity disorders, but it occurs primarily in clinical and educational settings (Lakoff 2000). Did school-age ­children have such disorders forty years ago? Does the availability and widespread use of drugs to “treat” attention disorders influence their identification? What role might increased class size and a shortage of teachers in primary schools play in the definition of “prob­lem” be­hav­iors among students? The rise in public recognition of Asperger’s Syndrome and the autism spectrum among adults is further illustrative of medicalization, this time fueled in part by p ­ eople who suddenly “recognize themselves” when reading about the disorder (Harmon 2004). In t­ hese ways, evolving medical terminology enters into public discourse and everyday vocabulary, which in turn furthers both the medicalization and often bureaucratization of ­human difference. The pro­cess of defining something heretofore unlabeled or known by a secular term as a disease or medical prob­lem reflects ongoing ambiguity and disagreement about the role of ­will and personal responsibility in preventing dysfunction or maintaining health. Deeply rooted Western ideologies about in­de­pen­dence, individualism, and mastery over nature also underlie many of the moral conflicts that arise in and from medicalization. The conflicting cultural logic is as follows: On the one hand, if a drug or medical procedure can treat or alleviate a prob­lem, then it must be biologically based, and therefore not attributable to personal failure. On the other hand, many treatable, verified diseases and injuries may result from voluntary be­hav­ iors such as smoking, drinking, taking opioids, downhill skiing, or playing professional football. The widely varied conceptions and repre­sen­ta­tions of hiv/aids throughout its brief history also reveal the signature of culture, politics, and social

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Social and Cultural Contributions to Health

forces. Much of the discussion and debate about immigration is seasoned with reference, explicit and nuanced, about the dangers of infection and other forms of harm from cultural “­others.” hiv/aids in the initial years of the epidemic evoked a mixture of moral, spiritual, virological, neurological, and social explanations. Paul Farmer’s (1992) study of Haitian understandings of hiv/aids describes the centrality of blame and accusation, constituting the “third epidemic”—­worse than the disease, in American and Haitian views. Accusations of sorcery arose in a Haitian village to account for the disease. The American public feared that the virus was introduced by infected Haitian immigrants. Haitians countered with conspiratorial ideas about U.S. motivations to weaken or defame impoverished black immigrants who would carry the affliction home. Fears of contagion and pollution by outsiders or malevolent ­others are shared by Americans and Haitians alike. Like homelessness and poverty, hiv/aids now infects more w ­ omen and ­children of color in the United States than persons who are homosexual, yet hiv/ aids bears the mark of sinfulness for some b ­ ecause of the first p ­ eople who ­were infected. In Africa, hiv/aids has always been a “heterosexual” disease, but b ­ ecause of its spread by prostitutes, it acquired yet another moral valence. In fact, the sensitivities associated with the main routes of hiv/aids transmission—­ risky sexual be­hav­iors and the use of illegal drugs—­coupled with the deadly nature of the disease, have created one of the most power­ful examples of stigma and discrimination in the recent history of ­human disease. Ominous viral diseases like Ebola, Zika, and hiv/aids provide both a win­dow into and a mirror reflecting deeply held values and ideas about order, pollution, and good and bad. The reciprocal influence of cultural conceptions, social sentiment and policy, and medical practice regarding p ­ eople with disability is also well demonstrated by remarkable changes since 1915, when Helen Keller (herself unable to see or hear) supported “weeding the ­human garden” by letting infants with severe anomalies die. “Surely they must admit that such an existence is not worthwhile. It is the possibilities of happiness, intelligence and power that give life its sanctity, and they are absent in the case of a poor, misshapen, para­lyzed, unthinking creature” (Keller 1915). A c­ entury ­later, several governors publicly apologized to the thousands of p ­ eople with intellectual and developmental disorders, formerly known as retarded, who w ­ ere sterilized without consent ­until the mid-1970s. While we might use a dif­fer­ent vocabulary at pres­ent, and while the possibilities for and inclusion of p ­ eople with disabilities have expanded by o ­ rders of magnitude, similar calculations

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are undertaken now in ultrasound suites and physician and ge­ne­tic counselors’ offices. What makes a life “worth living” is not a question that can be addressed with technology alone (Ginsburg and Rapp 2013). By the 1960s the care and treatment of persons with severe physical and ­mental disabilities changed dramatically (Grob 1991). Institutions for “mentally retarded” and mentally ill persons all but emptied, and even the most seriously impaired individuals now live and receive treatment in community settings. However, far too many have now taken up residence in other places of confinement and exclusion—­jails, prisons, and hospital emergency rooms—or the street (Dorner and Mittendorfer-Rutz 2017). ­These changes took place ­because of a confluence of forces: the development of effective drugs and treatment modalities; civil rights litigation and resulting l­egal requirements for the “least restrictive” treatment; the fiscal motivations of public ­mental health authorities seeking to reduce the expense of inpatient treatment and institutional confinement; and self-­ advocacy and advocacy from relatives of persons with severe disabilities. Some ­people with disabilities now have a larger presence in the media, the workplace, and in the overall consciousness of society at large. The Paralympic Games epitomize both a more inclusive era, along with a per­sis­tent affinity for exceptionalism as a credential for social merit—­a mascoting of ­people who “overcome” their deficits. Just as impor­tant, clinical practice and the medical assessment of disabilities have changed dramatically as a result of changes brought about in part by social forces, including technology. Had ­these individuals remained confined in institutions, their capacities to work or to lead meaningful lives might have remained unacknowledged. Vocabulary ­matters. “­People-first language” is the exemplar—­based on the idea that saying “person with” mitigates the erasure of personhood that comes from saying “an alcoholic” or “a schizophrenic.” Clinical terminology also ­matters: a transformation is underway as the terms of an established gender identity and expression and sexualities are replaced by a vocabulary that is more granular, accurate, and reflective of the dignity and sensibilities of ­people to whom they are applied. The efforts of advocates and professionals to alter public and scientific conceptions of and language related to prob­lems like substance misuse, alcohol abuse, and psychiatric disorders do not always work the same cultural territory. The shift from “­mental retardation” to “intellectual developmental disorder” was initiated by consumer and advocacy organ­izations and ­adopted into law, and it is now reflected in clinical diagnostic language and classifications.

Disease and Illness

Culture and social relationships are deeply implicated in the recognition, experience, and treatment of illness. Social scientists have found it useful to make a distinction between disease as a pathological pro­cess and biological condition, and illness as the personal, socially, and culturally influenced subjective experience of impairment or pathology (Young 1995). Within this framework, multiple sclerosis is the disease, and feeling tired, or unable to climb steps, as well as being treated as an object of pity, curiosity, or suspicion, and facing discrimination in employment, all constitute the illness. While calling attention to personal experience and pathophysiology as concurrent and legitimate pro­cesses, the disease-­illness concepts may, however, reinforce an unnecessary separation of biology from culture and of body from person (Taussig 1980). How ­people who are sick and t­hose around them respond to illness is part of a cultural code that is learned, often without noticing. No ­matter what kind of healing system prevails, t­here are well-­understood codes of

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Social and Cultural Contributions to Health

Recognition of the unintended stigmatizing consequences of language motivated the authors of the most recent Diagnostic and Statistical Manual of Mental Disorders (dsm-5) of the American Psychiatric Association to change the terminology used for drug and alcohol disorders. The work group had extensive discussions on the use of the word “addiction.” Th ­ ere was general agreement that “dependence” as a label for compulsive, out-­of-­control drug use has been problematic. It was confusing to physicians and resulted in patients with normal tolerance and withdrawal being labeled as “addicts.” Patients suffering from severe pain had adequate doses of opioids withheld ­because of fear of producing “addiction” (Regier, Kuhl, and Kupfer 2013). As a result, dsm terminology changed from dependence and addiction to “alcohol use disorder” with severity subclassifications. Despite being titled Facing Addiction in Amer­i­ca, the language in the 2016 surgeon general’s report reflects this shift (dhhs 2016). The introduction to the report reads: “All across the United States, individuals, families, communities, and health care systems are struggling to cope with substance use, misuse, and substance use disorders. Substance misuse and substance use disorders have devastating effects, disrupt the ­future plans of too many young ­people, and all too often, end lives prematurely and tragically. Substance misuse is a major public health challenge and a priority for our nation to address” (U.S. dhhs 2016: 1).

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conduct for “illness be­hav­iors” (Mechanic 1962). Illness be­hav­iors are ­those practices that accompany disease and dysfunction—­from eating chicken soup to chanting all night to appease an offended spirit. Illness be­hav­iors are learned, and although they change over time, American illness be­hav­ iors still reflect ancient humoral medicine princi­ples of balance: of hot and cold, and wet and dry. Thus many Americans explain the onset of an upper respiratory infection with a story of getting overtired, getting wet and cold, not eating enough—­not keeping the balance—­even though they are aware of the viral nature of most colds. While the reach of biomedicine is global, a minority of the world’s population rely solely or even primarily on biomedical care or adhere to Greek humoral beliefs about disease. Ayurvedic, traditional Chinese, and spiritist medical traditions—to name only the most prominent—­are also used along with biomedicine by a large proportion of the world population. So-­called alternative and complementary medicine, often consisting of techniques borrowed from ­these traditions, is increasingly popu­lar in the United States and among mainstream clinicians as treatment for chronic musculoskeletal pain, for example.

Accounting for Disease and Illness

Illness has multiple narrators (Hawkins 1993). Many are clinicians and physicians who through scholarly publication (Decker 1998) or literary rendering (Williams 1936; Holt 2014) have written about disease in general and spoken for and about specific patients. This tradition continues in the scientific and literary world as physicians tell their own stories and narrate the experiences of their patients (Gawande 2002; Vonnegut 2010). Major medical journals regularly publish physician narratives of clinician-­patient relationships or situations that are indelible, wrenching, or celebratory (Grouse 1997; Anonymous 2016). Vari­ous efforts to apply the resulting insights to clinical practice and doctor-­patient relationships are proposed in the genre of narrative medicine (Kleinman, Eisenberg, and Good 1978; Charon 2004). Descriptive, biographical, autobiographical, and ethnographic accounts of illness and healing also have a long history in medical anthropology and qualitative sociology, along with gender studies and other health humanities (Liebow 1993). In a sense, the medical chart/record is a biography of the patient, written by many authors, except patients themselves. ­These third-­person, scholarly

Sick Roles

Illness is situated in and defined by the roles that individuals are expected to play in society. The most enduring articulation of this perspective is sociologist Talcott Parsons’s (1951) idea of the sick role. Parsons described expectations for p ­ eople who are ill that are based on American values of responsibility, in­de­pen­dence, and productivity. First, if the illness is severe enough, a person is excused from normal social role responsibilities. ­People are permitted to stay home from school or work if ill, for example. The second component of the sick role is that a person who is ill deserves to be taken care of, by ­either ­family or social institutions, in order to get well. Third, ­people who are infirm are expected to consider illness as undesirable and are obligated to try to get well—to seek treatment, to change diet, quit smoking, or to follow doctor’s o ­ rders. Rejecting or not meeting this expectation—­refusing treatment for drug use, for example—­may lead to loss of the “deserving-­of-­help” status. In 1994, federal legislation was passed that strictly limited disability income support for ­people with substance use

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Social and Cultural Contributions to Health

or medical expert storytellers are sometimes joined or countered by a substantial chorus of first-­person narratives and reflections of illness and injury (Styron 1990; Mairs 1996; Grealy 1994). Second-­person stories, ­those written by relatives and loved ones of ­people who have vari­ous debilitating or fatal conditions (Bayley 1999; Neugeboren 1997), are equally abundant and compelling. This tells us that the experiences of injury, illness, treatment, birth, death, and not-­so-­everyday life, give rise to multiple versions and are not conveyed wholly by a one-­dimensional perspective or account. ­There is no undisputed sole authority; only the collective experiences, recollections, sensations, vocabularies, and points of focus among the participants. Explanatory model elicitations (Kleinman 1980) evoke a specific kind of accounting of illness that asks patients about the terminology they use for a disease or their pain; their ideas about etiology; their ideas about how a par­tic­u­lar illness works; how long they think it w ­ ill last; their expectations for the outcome of treatment; their account of the severity of the prob­lem and its impact on their daily lives (e.g., Estroff et al. 1991). Few individuals have consistent, well-­developed “models” of their physical or psychological prob­lems, so the explanatory model concept may be most useful as a way to invite a patient to give their account or narrative of themselves and their pain and illness in a clinical setting.

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disorders and revoked the benefit for ­those who did not comply with treatment. In 1995, persons with substance use disorders ­were excluded from eligibility for disability benefits altogether. H ­ ere, the emphatic medicalization of “addictions” within biomedical practice did not influence public sentiment or policy regarding the moral status of addicted persons. Cultural ideas about responsibility and w ­ ill overrode the medical mantle of deservedness vis-­à-­vis disease. Similarly, exemption from responsibilities b ­ ecause of illness is hotly contested in the case of ­mental illness. In the realm of criminal law, “diminished capacity” and “not guilty by reason of insanity” are l­ egal concepts that express the cultural exemption from full responsibility if a person is sick. Recent U.S. history provides examples of assailants of public officials as well as persons who kill scores of ­children in schools or other public spaces. At this intersection of medical and ­legal concepts and pro­cesses, we express both therapeutic and punitive responses to the perpetrators. Their incomprehensible acts must arise from illness, but we still seek to punish them for ­these acts. Increasingly, states are replacing their not guilty by reason of insanity statutes with “guilty and mentally ill” legislation. This may represent a shift in basic cultural frameworks about illness and responsibility and reflects a notion that punitive and therapeutic practices cannot be combined when the social fabric is deeply wounded. ­People who have other enduring and disabling conditions encounter difficulties when they “try to get well” but cannot. Their inabilities often become the object of intense scrutiny when they seek public assistance via Social Security Disability Insurance or require substantial resources to attend school, for example, ­because of an under­lying cultural formulation about legitimate need and deservedness. The formula derives from the sick role. ­Those who cannot get well or who need assistance ­because of medically ­determined pathologies are deemed deserving. When ­there is a possibility that lack of ­will is involved, that a person fails to try to improve or become more productive, public benevolence is held in abeyance.

Sex, Gender, Health, and Illness

In addition to cultural perspectives on gender identity and expression, the social life of gender and sex in health requires consideration. Differential health outcomes for men and ­women are common in all nations, but the specifics of ­those differences vary considerably. In developing nations, infec-

17

Social and Cultural Contributions to Health

tious disease and po­liti­cal and ethnic warfare have taken an enormous toll and are the leading ­causes of morbidity and mortality. Life expectancy for men and ­women is similar; but striking differences are found in literacy, po­liti­cal rights, and economic resources, all of which are related to access to health ser­vices and health outcomes (World Bank 2004). Studies in the United States and other industrialized countries focus on why ­women report higher levels of illness and use medical ser­vices more frequently, even when reproduction-­related conditions are excluded, while men seek health care less frequently and often in l­ ater stages of disease (Doyal 2001). W ­ omen live longer than men and men have higher mortality rates for all major c­ auses of death—­heart disease, cancer, infectious and parasitic diseases, and accidents, poisonings, and vio­lence (Waldron 1990). ­Women live longer than men even during famine and epidemics (Zarulli et al. 2018). Explanations for t­ hese sex and gender differences in morbidity, mortality, and use of health care include individual and societal f­ actors. Some research locates the ­causes in biology. The earlier onset of coronary heart disease for men, for example, is often attributed to the protective effect of estrogen in premenopausal ­women, and the ­later onset for ­women is associated with dif­fer­ent complications. Nonbiological explanations for gender difference in rates of heart disease include variation in risk f­actors such as smoking (Waldron 1990), personality traits associated with heart disease, and one’s level of social “connectedness” (Lasker, Egolf, and Wolf 1994). Many studies have also examined ­whether differences in referral, diagnosis, and treatment might explain dif­fer­ent outcomes. In the case of heart disease, most studies of referral and treatment have shown that when potential confound­ers are taken into account, gender differences are not significant. Bickell and colleagues (1992) demonstrated that when admitted to hospitals with moderately serious heart disease, ­women undergo fewer procedures than men, but it is not clear ­whether they received less appropriate care or ­whether men ­were overtreated. ­There is strong evidence that dif­fer­ent rates of mortality and morbidity and the use of health care ser­vices are related to the social roles that men and ­women play (Ratcliff 2002; Zarulli et al. 2018). ­These social roles often influence activities such as diet, smoking, alcohol and drug use, and exposure to occupational and environmental hazards (Verbrugge 1989; Waldron 1990). Differential socialization of men and w ­ omen—­particularly in the United States with its “rugged individualist” role model for young men—­was associated with differences in risk-­taking be­hav­iors and integration into social networks, which provide a buffer against illness (Berkman and Syme 1979).

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­ oing to the doctor may be a sign of weakness for many men, while for G ­women, seeking help is appropriate be­hav­ior. Yet as conceptions of maleness and femaleness evolve, ­these connections require reexamination. Many of t­ hese ­factors combine to affect disease rates in complex and in­ter­est­ing ways; however it is also impor­tant neither to oversimplify the relationship between sex, gender, and health, nor to ste­ reo­­type sex and gender roles and socialization pro­cesses, ­either within one society or in comparison to other sociocultural conceptions of gender. Contemporaneous with t­hese findings is the increasing plasticity of the categories of gender itself and the enlarging and energetic presence of an array of sexualities in the social and po­liti­cal landscape. Th ­ ere are now more than 50 terms for gender identity and expression and the vocabulary continues to expand (National lgbt Health Center Education Center 2018). ­People who consider themselves transgendered or transsexual do not fit conventional binary social categories of gender and face specific health risks and obstacles in clinical care (James et  al. 2016). Same-­sex ­couples have fought ­legal and po­liti­cal ­battles for recognition and access to traditional social institutions such as marriage and parenthood. Nonetheless, assisted reproduction via medical technology such as artificial insemination, and hormonal and surgical alteration of primary and secondary sex characteristics, has contributed to challenging ­these conventions and blurring the lines around gender and sex roles. Gender has traditionally been viewed as a basic social category, clearly determinable and obviously immutable. As ideas about and the enactment of gender continue to expand, this mainstay category ­will continue to be challenged.

Social ­Factors and In­equality

Over time, dif­fer­ent religions, cultures, and scientific and other academic disciplines have taken vari­ous approaches to defining the ­causes of disease and examining why some p ­ eople or groups tend to be more at risk than ­others (Braveman, Egerter, and Williams 2011; Dickman, Himmelstein, and Woolhandler 2017; cdc 2013). Epidemiologists describe the frequency and distribution of disease in a population and focus on immediate risk f­actors that predict disease occurrence. The logic of this perspective is that the more closely related a risk ­factor is to the biological mechanism of disease, the more likely it is to account for the occurrence of that disease, and the more useful it ­will be in developing an effective clinical intervention.

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Social and Cultural Contributions to Health

Classic causal pairs include mosquito bites and malaria, walking barefoot in snail-­infested ­waters and schistosomiasis, and living in close quarters with TB-­infected ­people and tuberculosis. Some of the foundational work in epidemiology (Cassel 1976) features the importance of cultural influences on health-­related be­hav­iors. In addition, epidemiological perspectives on chronic conditions involve more complex webs of social explanatory ­factors than are required to explain some acute diseases (Krieger et al. 1993). Nevertheless, the principal focus of epidemiology has been on the immediate determinants of disease. In contrast, social epidemiologists and social scientists focus on the structure and social pro­cesses of socie­ties and find that rates of disease can be predicted by knowing the characteristics of a society’s class structure (Townsend and Davidson 1982; Navarro 1990), its rate of social change (Durkheim 1951; Cassel 1976), and group characteristics within a society, such as race/ethnicity, gender, sex, and age (Braveman et al. 2011). Cultural influences are integrated into this view at both societal and individual levels. Scholars have also debated w ­ hether the degree of income in­equality that characterizes a society as a ­whole exerts an in­de­pen­dent effect on individual health outcomes, perhaps through increased social disruption or crime (Kawachi, Kennedy, and Wilkinson 1999), though other evidence has demonstrated no in­de­pen­dent effect (Mackenbach 2002). In this broader view of disease causation, differential exposures to biological risks are influenced by one’s position in society, and differential responses to biological risks are affected by one’s overall social and economic environment, which in turn influences one’s health care environment. As early as 1910, a local government board in ­England pronounced, “No fact is better established than that the death rate, and especially the death rate among ­children, is high in inverse proportion to the social status of the population” (Antonovosky and Bern­stein 1977: 453). Numerous studies since then have confirmed the relationship between socioeconomic status and health outcomes, finding that ­every step up the social class ladder is accompanied by an incremental improvement in health status as well (Bor, Cohen, and Galea 2017; McKeown 1976; Marmot, Kogevinas, and Elston 1987; Mechanic 2000). As a result, social scientists increasingly define social conditions as “fundamental ­causes” of disease, observing that they persist in being linked to morbidity and mortality even as the a­ ctual diseases that ­people suffer may change over time (Link and Phelan 1995). Bourgois and colleagues (2017: 299) introduce the concept of structural vulnerability to “highlight the pathways through which specific local hierarchies

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and broader sets of power relations may exacerbate an individual patient’s health prob­lems.” They propose an “applied pragmatic approach to intervening on ­these forces by identifying obstacles to healthy lifestyles and treatment adherence outside the clinic and facilitating access to care inside the clinic.” Although debates about the nature and ­causes of illness and health may seem academic, ­there are real po­liti­cal consequences. Individuals are members of social classes, races, ethnicities, genders, and age groups, all of which entail a differential risk of illness and mortality and directly increase or decrease their chances of suffering illness or premature death. Yet when differences in individual be­hav­ior are linked to ­these group characteristics and used to explain higher risks for morbidity and mortality, the tendency is to conclude that ­people have or get the health they deserve. Research that takes a broader approach, focusing on the structure of society and the health risks of living in poverty and of being a racial or ethnic minority in Amer­i­ca demonstrates that health is not solely the result of individual initiative or failure. Rather, it is also the product of society and society’s economic and cultural forces, including greater exposures to toxic work and living environments, racism, lack of adequate food, and limited education and medical care (Washington 2006).

Special Prob­lems of Race and Ethnicity in the United States

Some authors have suggested that the health differences between non-­ Hispanic whites and minorities in the United States are an expression of the pervasive health disadvantage that always accompanies being in the lower social classes, where a disproportionate number of minorities find themselves. Research continues to document a high correlation between race and ethnicity and the indicators that are frequently used to mea­sure social class: income, education, and occupation—­particularly for African Americans. In fact, Dressler (1993) argues that race as defined by skin color actually determines or defines one’s social class in Amer­i­ca. Yet paradoxical findings have also been observed, such as the low rates of infant mortality among Hispanics, despite their low incomes and relative lack of health insurance coverage (Scriber 1996). A number of ­factors complicate this issue. Most health status data, such as mortality rates, disease prevalence and incidence, and data on health ser­vices utilization, continue to be collected by race and ethnicity (increas-

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Social and Cultural Contributions to Health

ingly difficult to recognize or categorize accurately) rather than by mea­sures of social class. Traditionally, medical researchers have used race and ethnic group categories as shorthand terms or proxies for social class, despite increased awareness of the flaws inherent in this assumption. This reliance on race and ethnicity makes it difficult to estimate the contribution of social class to health status. Alternate terminology based on a more accurate understanding of race and ethnicity has yet to be developed. Consequently, much of the current debate in the United States about health inequalities has been framed as disparities among dif­fer­ent racial and ethnic groups, with ­little attention given to how contested t­ hese categories themselves have become. Furthermore, the practice of using race and ethnicity interchangeably, with dif­fer­ent definitions or absent definition altogether, has created additional prob­lems in interpreting the findings of research (Braun et  al. 2007; Braun and Saunders 2017). How, then, should race and ethnicity be defined and used? Despite considerable controversy, conceptual and empirical scholarship, and policy statements suggesting that race is not a meaningful biological term (Lee, Mountain, and Koenig 2001), medical texts, clinical lit­er­a­ture, and research routinely use race without definition or explanation. When health differences are documented, u ­ nless other­wise argued, race is usually understood or implied as a biological rather than a social or cultural variable (Schwartz 2001). This view has been reinforced by the increasingly common application of race to ge­ne­tic and pharmacogenomic research, reifying already problematic categories (Lee et al. 2001; Duster 2003). Much scholarship (LaVeist and Gibbons 2001, Williams 1999; van Ryn 2002) has been devoted to identifying the vari­ous ­factors that “race” and “ethnicity” do represent, and advocates that researchers adopt more specific mea­sures in studies of health disparities. When f­ actors such as individual lifestyle and be­hav­iors, cultural beliefs, physiologic mea­sures, geo­graph­i­cal location, insurance coverage, education, and income are included in studies, the remaining health differences may be attributed to the effects of racial bias or discrimination. Compared to whites, minorities perceive higher levels of racial discrimination in medical care and research settings and express greater mistrust of physicians and medical research (Corbie-­Smith, Thomas, and George 2002; Lillie-­Blanton et al. 2000). Estimating how and to what extent bias and discrimination are implicated in health disparities outcomes is both challenging and complex. Increasingly, researchers are undertaking systematic studies of the doctor-­patient encounter to delineate the nature and scope of intended and unintended bias (Roter and Hall 1992; Van Ryn 2002).

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The importance of this research was reinforced by the Institute of Medicine report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare (Institute of Medicine et al. 2003) and the cdc’s Health Disparities and Inequalities Report—­United States, 2013 (cdc 2013), which found consistent evidence of disparities in health care in a remarkable range of illnesses and ser­vices, and which demonstrated that when social and economic f­ actors are accounted for, ­there are still significant health differences between minorities and whites. The evidence “overwhelmingly links greater social disadvantage with poorer health” (Braveman et  al. 2011). Upstream ­factors such as education, neighborhood conditions, working conditions, income and wealth, race and racism, environmental conditions, and stress are implicated in the transgenerational transfer of poor health outcomes. ­These outcomes include disproportional social-­disadvantage-linked asthma, diabetes, obesity, periodontal disease, premature birth, suicide, and cancer screening and treatment, and cigarette smoking to name only a few (cdc 2013). ­These differences occur in the context of broader historic and con­ temporary social and economic in­equality, and they provide evidence of per­sis­tent racial and ethnic discrimination in many sectors of American life.

Conclusion

Health inequalities both reflect and reflect on the socie­ties within which they exist. They may be seen as morally problematic; or they may be seen as unfortunate, but not necessarily unfair. Some identify in­equality itself as a pathology (Kawachi et al. 1999), or what Paul Farmer (1999) refers to as our “modern plague,” and advocate greater economic equality as a pathway to improved health. Regardless of the moral stance one takes about health in­equality, it is likely to be the focus of ongoing attention in the near ­future, both in the United States and worldwide. Global health inequalities have long been seen as unchangeable facts of life: ­there is one level of health and health care for wealthy countries and another for resource-­poor nations. However, spurred by controversies in the field of infectious diseases, including outbreaks of Ebola and Zika, this view has begun to change. Debates over the ethical conduct of clinical research in international hiv/aids and Zika ­trials have also contributed to this perspective shift as research in the context of extreme poverty and lack of access to life-­saving drugs came to be seen as potentially exploitative (Benatar 2001, 2002; Participants in the 2001 Conference on Ethical Aspects of Research

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Social and Cultural Contributions to Health

in Developing Countries 2002; Arras 2004). The sars epidemic in 2003 provided further momentum for the emerging view of an interdependent global population. Together, hiv/aids and sars have demonstrated how connected and vulnerable the world’s ­people are when confronted with a deadly infectious pathogen. In the United States, contradictions between our ethic of equality and the substantial inequities in access to health insurance and health care await resolution. Hansen and colleagues (2014: 11) describe the pathologizing of poverty, wherein disability-­based income becomes “a new survival strategy in this era of medicalized poverty which for some has permitted a stable home, a way to avoid street vio­lence, reduce illegal drug consumption. . . . ​[B]ecause it is one of the few available routes to stable survival income . . . ​in the context of poverty, using disability and illness to gain benefits can be . . . ​a ­viable harm reduction strategy in a post-­welfare state that offers few alternative solutions to unemployment.” Social science critiques focus on individual experiences of difference and disability and social conditions that underlie disparate health outcomes for population groups. But researchers and their approaches to science are also situated in the same socie­ties that produce the inequalities, and, as we have argued, sometimes reproduce ­these same inequalities. The view that science is morally neutral and should be ­free of po­liti­ cal constraint is challenged by other deeply held beliefs about privacy, autonomy, and the sanctity of life. New possibilities to make choices about life and death, and about altering bodies, come at a rapid pace courtesy of medical technologies. Each innovation spawns more possibilities and often as much controversy. Then the social fabric and cultural frameworks among us serve as reference points. Yet they shift ­because we do. Can social arrangements and cultural conceptions keep pace with medical science and practice? Developments in ge­ne­tics and the ­Human Genome Proj­ect (hgp) illustrate this question. Originally, the hgp promoted the “sameness” of h ­ uman beings, emphasizing that we all share 99.99% ­percent of the same sequences of dna. However, ge­ne­ticists have now turned to investigations of “difference,” relying upon roadmaps within the h ­ uman genome to identify patterns of ge­ne­tic variation linked to common diseases. What impact w ­ ill ­these new scientific and technological forces have on the contested category of race? How can we avoid reinforcing a prior ideology about ­human difference, and avert the use of science and medicine to divide, rank and control ­people (Washington 2006)? ­Will countervailing science and a new

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willingness to confront the broader, societal sources of health disparities in our society (Institute of Medicine et al. 2003) construct a new dialogue about race? The intellectual and moral challenges we continue to create reinforce the need for physicians, patients, and medical, social science, and humanities scholars whose understandings and training are both broad and deep. Continued improvement of the health of individuals, groups, and nations rests in large part on multidisciplinary, multidimensional research and practice. One of the best allies we have in facing the perils and enticements ahead is the ability to view medicine in society, and society in medicine, and to continually reflect critically on what this means.

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LaVeist, T. A., and Gibbons, M. C. 2001. Mea­sur­ing racial and ethnic discrimination in the U.S. healthcare setting: A review of the lit­er­a­ture and suggestions for a monitoring program. Final report to U.S. Department of Health and ­Human Ser­vices, April 12. Lee, S. S., Mountain, J., and Koenig, B. A. 2001. The meanings of “race” in the new genomics: Implications for health disparities research. Yale Journal of Health Policy, Law, and Ethics 12(15): 33–75. Liebow, E. 1993. Tell Them Who I Am. New York: The ­Free Press. Lillie-­Blanton, M., Brodie, M., Roland, D., Altman, D., and McIntosh, M. 2000. Race, ethnicity, and the health care system: Public perceptions and experiences. Medical Care Research Review 57(Suppl. 1): 218–235. Link, B., and Phelan, J. 1995. Social conditions as a fundamental cause of disease. Journal of Health and Social Be­hav­ior (Spec. No.): 80–94. doi:10.2307/2626958. Lock, M. 1994. Encounters with Aging. Berkeley: University of California Press. Mackenbach, J. P. 2002. Income in­equality and population health. British Medical Journal 324: 1–2. Mairs, N. 1996. Waist High in the World. Boston: Beacon Press. Marmot, M. G., Kogevinas, M., and Elston, M. A. 1987. Social/economic status and disease. Annual Reviews of Public Health 8: 111–135. McKeown, T. R. 1976. The Role of Medicine: Dream, Mirage, or Nemesis. London: Nuffield Provincial Hospitals Trust. McNamee, M .J., and Edwards, S. D. 2006. Transhumanism, medical technology and slippery slopes. Journal of Medical Ethics 32: 513–518. Mechanic, D. 1962. The concept of illness be­hav­ior. Journal of Chronic Disease 15: 189–195. Mechanic, D. 2000. Rediscovering the social determinants of health. Health Affairs 19(3): 269–276. National lgbt Health Center Education Center. 2018. Glossary of lgbt Terms for Health Care Teams. https://­www​.­lgbthealtheducation​.­org​/­publication​/­lgbt​-­glossary​/­. Navarro, V. 1990. Race or class versus race and class: Mortality differentials in the United States. The Lancet 336: 1238–1240. Neugeboren, J. 1997. Imagining Robert: My ­Brother, Madness, and Survival. New York: William Morrow and Co. Parsons, T. 1951. The Social System. New York: The ­Free Press. Participants in the 2001 Conference on Ethical Aspects of Research in Developing Countries. 2002. Fair benefits for research in developing countries. Science 298: 2133–2134. Pew Research Center. 2015. Multiracial in Amer­i­ca: Proud, diverse and growing in numbers. Social and Demographic Trends (June 11). http://­www​.­pewsocialtrends​.­org​ /­2015​/­06​/­11​/m ­ ultiracial​-i­ n​-a­ merica/. Rapp, R. 1993. Accounting for amniocentesis. In S. Lindenbaum and M. Lock, eds., Knowledge, Power, Practice. Berkeley: University of California Press. Ratcliff, K. S. 2002. ­Women and Health: Power, Technology, In­equality, and Conflict in a Gendered World. Boston: Allyn and Bacon. Regier, D. A., Kuhl, E. A., and Kupfer, D. J. 2013.The DSM-5: Classification and criteria changes. World Psychiatry 12(2): 92–98.

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Rose, N. 2007. Beyond medicalization. The Lancet 369: 700–701. Schwartz, R. S. 2001. Racial profiling in medical research. New ­England Journal of Medicine 344(18): 1392–1393. Scriber, Richard. 1996. Paradox as paradigm—­The health outcomes of Mexican Americans. American Journal of Public Health 86: 303–304. Shamp, J. 2004. Study: Estrogen pills may cause dementia. Durham Herald-­Sun, June 22, 2004, A2. Shields, A. E. 2017. Epige­ne­tic signals of how social disadvantage “gets ­under the skin”: A challenge to the public health community. Epigenomics 9(3): 223–229. Styron, W. 1990. Darkness Vis­i­ble: A Memoir of Madness. New York: Random House. Taussig, M. 1980. Reification and the consciousness of the patient. Social Science and Medicine 14(1 Pt. B): 3–13. Tomasini, F. 2007. Imagining ­human enhancement: Whose ­future, which rationality? Theoretical Medicine and Bioethics 28: 497–507. Townsend, P., and Davidson, N. 1982. Inequalities in Health: The Black Report. New York: Penguin Books. U.S. Department of Health and ­Human Ser­vices (dhhs). 2016. Facing Addiction in Amer­i­ca: The Surgeon General’s Report on Alcohol, Drugs, and Health. Washington, DC: U.S. Department of Health and ­Human Ser­vices. https://­addiction​ .­surgeongeneral​.­gov​/­sites​/­default​/­files​/­surgeon​-­generals​-­report​.­pdf. Van Ryn, M. 2002. Research on the provider contribution to race/ethnicity disparities in medical care. Medical Care 40 (Suppl. 1): 1140–1151. Verbrugge, L. M. 1989. The twain meet: Empirical explanations of sex differences and mortality. Journal of Health and Social Be­hav­ior 30: 282–304. Vonnegut, M. 2010. Just Like Someone without ­Mental Illness Only More So: A Memoir. New York: Bantam. Waldron, I. 1990. What do we know about ­causes of sex differences in mortality? A review of the lit­er­a­ture. In P. Conrad and R. Kerns, eds., The Sociology of Health and Illness. New York: St. Martin’s Press. Washington, H. A. 2006. Medical Apartheid. New York: Harlem Moon Broadway Books. Williams, D. R. 1999. Race, socioeconomic status, and health: The added effects of racism and discrimination. Annals of the New York Acad­emy of Sciences 896: 173–188. Williams, W. C. 1936. The Doctor Stories. New York: New Directions. World Bank. 2004. Gendernet. Cite on gender and health. Retrieved from http://­www​ .­worldbank​.­org​/­gender​/n ­ ew on June 19, 2004. Young, A. 1995. The Harmony of Illusions. Prince­ton, NJ: Prince­ton University Press. Zarulli, V., Barthold Jones, J. A., Oksuzyan, A., Lindahl-­Jacobsen, R., Christensen, K., and Vaupel, J. W. 2018. ­Women live longer than men even during severe famines and epidemics. Proceedings of the National Acad­emy of Sciences 115(4): E832–­E840. http://­www​.­pnas​.­org​/­content​/­115​/­4​/­E832.

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. Th ­ ere 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 p ­ eople.”1 It was in part through medicine that the h ­ uman 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 p ­ eople, 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.2 Nikolas Rose, “Beyond Medicalisation,” from The Lancet 369, no. 9562 (2007): 700–702. Copyright © 2007. Reprinted with permission from Elsevier.

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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 o ­ thers—­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 p ­ eople that we are.

Medical Forms of Life

The practices of medicine have modified the very life form that is the con­ temporary ­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, e­ tc. The practice of vaccination—­hybridising ­human beings with dead or deactivated bacteria—­ has transformed h ­ uman 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 t­ able 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 o ­ thers, individually and

Medical Meaning

Medicine is inextricably intertwined with the ways in which we experience and give meaning to our world. ­Whether through medical themes in lit­er­a­ ture, medical images in art, medical heroes and villains in movies or on TV, medical narratives of patienthood, the imagination of t­ hose 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 c­ entury and through much of the twentieth c­ entury—­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, e­ tc. The relation between the meta­ phor 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

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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.

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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 be­hav­ iour, alcoholism, abnormal be­hav­iour, anxiety, stress, dementia, old age, death, grief, and mourning.3 Nowadays, t­ here 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 w ­ ere 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 t­ here 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 u ­ nder 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 unhappi-

Assembling Forms of Life

Medicalisation implies passivity on the part of the medicalised. One example is when p ­ eople 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 u ­ nder 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.4 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 pleas­ ur­able and socially acceptable. In engaging with t­ hese 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

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ness). 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.

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to be, and the lives we want to lead. But if medicine has been fully engaged in making us the kinds of p ­ eople 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.

notes 1 Hacking I. Making up p ­ eople. In Heller TC, Sosna M, Wellbery DE, eds. Reconstructing Individualism: Autonomy, Individuality and the Self in Western Thought. Stanford: Stanford University Press; 1986:222–236. 2 Rose N. Medicine, history and the pres­ent. In Jones C, Porter R, eds. Reassessing Foucault: Power, Medicine and the Body. London: Routledge; 1994:48–72. 3 US President’s Council on Bioethics, Kass L. Beyond Therapy: Biotechnology and the Pursuit of Happiness. Washington: President’s Council on Bioethics; 2004:xxi, 328. 4 Miller P, Rose  N. Mobilising the consumer: assembling the subject of consumption. Theor Cult Soc. 1997;14:1–36.

On Being a Cripple Nancy Mairs

To escape is nothing. Not to escape is nothing. —­l ouise 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 w ­ omen’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 t­ here 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 Nancy Mairs, “On Being a Cripple,” from Plaintext, by Nancy Mairs. Copyright © 1986 The Arizona Board of Regents. Reprinted by permission of the University of Arizona Press.

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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 m ­ ental. 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 g­ reat race of life. Th ­ ese 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 t­ hose 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 d ­ on’t care what you call me, so long as it i­ sn’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. Ih ­ aven’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, b ­ ehind a field hockey stick and u ­ nder 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

39

On Being a Cripple

hours in the arms of one man or another u ­ nder 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. When I was 28 I started to trip and drop t­hings. What at first seemed my natu­ral clumsiness soon became too pronounced to shrug off. I consulted a neurologist, who told me that I had a brain tumor. A battery of tests, increasingly disagreeable, revealed no tumor. About a year and a half l­ater I developed a blurred spot in one eye. I had, at last, the episodes “disseminated in space and time” requisite for a diagnosis: multiple sclerosis. I have never been sorry for the doctor’s initial misdiagnosis, however. For almost a week, ­until the negative results of the tests ­were in, I thought that I was ­going to die right away. ­Every day for the past nearly 10 years, then, has been a kind of gift. I accept all gifts. Multiple sclerosis is a chronic degenerative disease of the central ner­ vous system, in which the myelin that sheathes the nerves is somehow eaten away and scar tissue forms in its place, interrupting the nerves’ signals. During its course, which is unpredictable and uncontrollable, one may lose vision, hearing, speech, the ability to walk, control of bladder and/or bowels, strength in any or all extremities, sensitivity to touch, vibration, and/or pain, potency, coordination of movements—­the list of possibilities is lengthy and, yes, horrifying. One may also lose one’s sense of humor. That’s the easiest to lose and the hardest to survive without. In the past 10 years, I have sustained some of ­these losses. Characteristic of ms are sudden attacks, called exacerbations, followed by remissions, and ­these I have not had. Instead, my disease has been slowly progressive. My left leg is now so weak that I walk with the aid of a brace and a cane; and for distances I use an Amigo, a variation on the electric wheelchair that looks rather like an electrified kiddie car. I no longer have much use of my left hand. Now my right side is weakening as well. I still have the blurred spot in my right eye. Overall, though, I’ve been lucky so far. My world has, of necessity, been circumscribed by my losses, but the terrain left me has been ample enough for me to continue many of the activities that absorb me: writing, teaching, raising ­children and cats and plants and snakes, reading, speaking publicly about ms and depression, even playing bridge with p ­ eople patient and honorable enough to let me scatter cards ­every which way without sneaking a peek. Lest I begin to sound like Pollyanna, however, let me say that I d ­ on’t like having ms. I hate it. My life holds realities—­harsh ones, some of them—­that

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no right-­minded ­human being o ­ ught to accept without grumbling. One of them is fatigue. I know of no one with ms who does not complain of bone-­ weariness; in a disease that pres­ents an astonishing variety of symptoms, fatigue seems to be a common f­ actor. I wake up in the morning feeling the way most p ­ eople do at the end of a bad day, and I take it from t­here. As a result, I spend a lot of time in extremis and, impatient with limitation, I tend to ignore my fatigue ­until my body breaks down in some way and forces rest. Then I miss picnics, dinner parties, poetry readings, the brief visits of old friends from out of town. The offspring of a puritanical tradition of exceptional venerability, I cannot view t­ hese lapses without shame. My life often seems a series of small failures to do as I ­ought. I lead, on the w ­ hole, an ordinary life, prob­ably rather like the one I would have led had I not had ms. I am lucky that my predilections w ­ ere already solitary, sedentary, and bookish—­unlike the world-­famous French cellist I have read about, or the young ­woman I talked with one long after­noon who wanted only to be a jockey. I had just begun gradu­ate school when I found out something was wrong with me, and I have remained, interminably, a gradu­ate student. Perhaps I would not have if I’d thought I had the stamina to return to a full-­time job as a technical editor; but I’ve enjoyed my studies. In addition to studying, I teach writing courses. I also teach medical students how to give neurological examinations. I pick up freelance editing jobs ­here and ­there. I have raised a foster son and sent him into the world, where he has made me two grandbabies, and I am still escorting my ­daughter and son through adolescence. I go to Mass e­ very Saturday. I am a superb, if messy, cook. I am also an enthusiastic laundress, capable of sorting a hamper full of clothes into five subtly differentiated piles, but a terrible h ­ ouse­keeper. I can do italic writing and, in an emergency, bathe an oil-­soaked cat. I play a fiendish game of Scrabble. When I have the time and the money, I like to sit on my front steps with my husband, drinking Amaretto and smoking a cigar, as we imagine our counter­parts in Leningrad and make sure that the sun gets down once more ­behind the sharp childish scrawl of the Tucson Mountains. This lively plenty has its bleak complement, of course, in all the ­things I can no longer do. I ­will never run again, except in dreams, and one day I may have to write that I ­will never walk again. I like to go camping, but I ­can’t follow George and the ­children along the trails that wander out of a campsite through the desert or into the mountains. In fact, even on the level I’ve learned never to check the weather or try to hold a coherent conversation: I need all my attention for my wayward feet. Of late, I have begun to catch myself wondering how p ­ eople can propel themselves without canes. With

41

On Being a Cripple

only one usable hand, I have to select my clothing with care not so much for style as for ease of ingress and egress, and even so, dressing can be laborious. I can no longer do fine stitchery, pick up babies, play the piano, braid my hair. I am immobilized by acute attacks of depression, which may or may not be physiologically related to ms but are certainly its logical concomitant. ­These two ele­ments, the plenty and the privation, are never pure, nor are the delight and wretchedness that accompany them. Almost e­ very pickle that I get into as a result of my weakness and clumsiness—­and I get into plenty—is funny as well as maddening and sometimes painful. I recall one May after­noon when a friend and I ­were ­going out for a drink ­after finishing up at school. As we ­were climbing into opposite sides of my car, chatting, I tripped and fell, flat and hard, onto the asphalt parking lot, my abrupt departure interrupting him in mid-­sentence. “Where’d you go?” he called as he came around the back of the car to find me hauling myself up by the door frame. “Are you all right?” Yes, I told him, I was fine, just a bit rattly, and we drove off to find a shady patio and some beer. When I got home an hour or so ­later, my ­daughter greeted me with “What have you done to yourself?” I looked down. One elbow of my white turtleneck with the green froggies, one knee of my white trousers, one white kneesock ­were blood-­soaked. We peeled off the clothes and inspected the damage, which was nasty enough but not alarming. That part ­wasn’t funny: The abrasions took a long time to heal, and one got a ­little infected. Even so, when I think of my friend talking earnestly, suddenly, to the hot thin air while I dropped from his view as though through a trap door, I find the image as silly as something from a Marx ­Brothers movie. I may find it easier than other cripples to amuse myself b ­ ecause I live propped by the ac­cep­tance and the assistance and, sometimes, the amusement of ­those around me. Grocery clerks tear my checks out of my checkbook for me, and sales clerks find chairs to put into dressing rooms when I want to try on clothes. The p ­ eople I work with make sure I teach at times when I am least likely to be fatigued, in places I can get to, with the materials I need. My students, with one anonymous exception (in an end-­of-­the-­semester evaluation), have been un­perturbed by my disability. Some even like it. One was im­mensely cheered by the information that I paint my own fingernails; she deci­ded, she told me, that if I could go to such trou­ble over fine details, she could keep on writing essays. I suppose I became some sort of bright-­fingered muse. She wrote good essays, too. The most impor­tant struts in the framework of my existence, of course, are my husband and c­ hildren. Dismayingly few marriages survive the ms

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test, and why should they? Most 22-­and 19-­year-­olds, like George and me, can vow in clear conscience, ­after a childhood of chicken pox and summer colds, to keep one another in sickness and in health so long as they both ­shall live. Not many are equipped for catastrophe: the dismay, the depression, the extra work, the boredom that a degenerative disease can insinuate into a relationship. And our society, with its emphasis on fun and its association of fun with physical per­for­mance, offers ­little encouragement for a ­whole spouse to stay with a crippled partner. C ­ hildren experience similar stresses when faced with a crippled parent, and they are more helpless, since parents and ­children ­can’t usually get divorced. They hate, of course, to be dif­fer­ent from their peers, and the child whose m ­ other is tacking down the aisle of a school auditorium packed with proud parents like a Cape Cod dinghy in a stiff breeze jolly well stands out in a crowd. Deprived of ­legal divorce, the child can at least deny the ­mother’s disability, even her existence, forgetting to tell her about recitals and pta meetings, refusing to accompany her to stores or church or the movies, never inviting friends to the ­house. Many do. But I’ve been limping along for 10 years now, and so far George and the ­children are still at my left elbow, holding tight. Anne and Matthew vacuum floors and dust furniture and haul trash and rake up dog droppings and button my cuffs and bake lasagna and Toll House cookies with just enough grumbling so I know that they d ­ on’t have brain fever. And far from hiding me, ­they’re forever dragging me by racks of fancy clothes or through teeming school corridors, or welcoming ­gaggles of friends while I’m wandering through the ­house in Anne’s filmy pink babydoll pajamas. George generally calls before he brings someone home, but he does just as many dumb, thankless chores as the ­children. And they all yell at me, laugh at some of my jokes, write me funny letters when ­we’re apart—in short, treat me as an ordinary ­human being for whom they have some use. I think they like me. ­Unless ­they’re faking . . . Faking. ­There’s the rub. Tugging at the fringes of my consciousness always is the terror that p ­ eople are kind to me only b ­ ecause I’m a cripple. My ­mother almost shattered me once, with that instinct m ­ others have—­blind, I think, in this case, but unerring nonetheless—­for striking blows along the fault lines of their ­children’s hearts, by telling me, in an attack on my selfishness, “We all have to make allowances for you, of course, ­because of the way you are.” From the distance of a c­ ouple of years, I have to admit that I h ­ aven’t any idea just what she meant, and I’m not sure that she knew ­either. She was awfully angry. But at the time, as the words thudded home, I felt my worst fear, suddenly realized. I could bear being called selfish: I am. But I ­couldn’t

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On Being a Cripple

bear the corroboration that ­those around me ­were ­doing in fact what I’d always suspected them of ­doing, professing fondness while silently putting up with me b ­ ecause of the way I am. A cripple. I’ve been a l­ ittle cracked ever since. Along with this fear that p ­ eople are secretly accepting shoddy goods comes a relentless pressure to please—to prove myself worth the burdens I impose, I guess, or to build a substantial account of goodwill against which I may write drafts in times of need. Part of the pressure arises from social expectations. In our society, anyone who deviates from the norm had better find some way to compensate. Like fat p ­ eople, who are expected to be jolly, cripples must bear their lot meekly and cheerfully. A grumpy cripple i­sn’t playing by the rules. And much of the pressure is self-­generated. Early on I vowed that, if I had to have ms, by God I was g­ oing to do it well. This is a class act, ladies and gentlemen. No tears, no recriminations, no faint-­heartedness. One way and another, then, I wind up feeling like Tiny Tim, peering over the edge of the ­table at the Christmas goose, waving my crutch, piping down God’s blessing on us all. Only sometimes I d ­ on’t want to play Tiny Tim. I’d rather be Caliban, a most scurvy monster. Fortunately, at home no one much cares ­whether I’m a good cripple or a bad cripple as long as I make vichyssoise with fair regularity. One eve­ning several years ago, Anne was reading at the dining-­room ­table while I cooked dinner. As I opened a can of tomatoes, the can slipped in my left hand and juice spattered me and the ­counter with bloody spots. Fatigued and infuriated, I bellowed, “I’m so sick of being crippled!” Anne glanced at me over the top of her book. “­There now,” she said, “do you feel better?” “Yes,” I said, “yes, I do.” She went back to her reading. I felt better. That’s about all the attention my scurviness ever gets. ­Because I hate being crippled, I sometimes hate myself for being a cripple. Over the years I have come to expect—­even accept—­attacks of violent self-­loathing. Luckily, in general our society no longer connects deformity and disease directly with evil (though a charismatic once told me that I have ms ­because a devil is in me), and so I’m allowed to move largely at w ­ ill, even among small ­children. But I’m not sure that this revision of attitude has been particularly helpful. Physical imperfection, even freed of moral disapprobation, still defies and violates the ideal, especially for ­women, whose confinement in their bodies as objects of desire is far from over. Each age, of course, has its ideal, and I doubt that ours is any better or worse than any other. T ­ oday’s ideal ­woman, who lives on the glossy pages of dozens of magazines, seems to be between the ages of 18 and 25; her hair has body, her teeth flash white, her breath smells minty, her underarms are dry; she has

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a ­career but is still a fabulous cook, especially of meals that take less than twenty minutes to prepare; she does not ordinarily appear to have a husband or ­children; she is trim and deeply tanned; she jogs, swims, plays tennis, rides a bicycle, sails, but does not bowl; she travels widely, even to out-­of-­ the-­way places like Finland and Samoa, always in the com­pany of the ideal man, who possesses a nearly identical set of characteristics. Th ­ ere are a few exceptions. Though usually white and often blonde, she may be black, Hispanic, Asian, or Native American, so long as she is unusually sleek. She may be old, provided she is selling a laxative or is Lauren Bacall. If she is selling a detergent, she may be married and have a flock of strikingly messy ­children. But she is never a cripple. Like many w ­ omen I know, I have always had an uneasy relationship with my body. I was not a popu­lar child, largely, I think now, b ­ ecause I was peculiar: intelligent, intense, moody, shy, given to unexpected actions and inexplicable notions and emotions. But as I entered adolescence, I believed myself unpop­u­lar ­because I was homely: my breasts too flat, my mouth too wide, my hips too narrow, my clothing never quite right in fit or style. I was not, in fact, particularly ugly, old photo­graphs inform me, though I was well off the ideal; but I carried this sense of self-­alienation with me into adulthood, where it regenerated in response to the depredations of ms. Even with my brace I walk with a limp so pronounced that, seeing myself on the videotape of a tele­vi­sion program on the disabled, I ­couldn’t believe that anything but an inch-­worm could make pro­gress humping along like that. My shoulders droop and my pelvis thrusts forward as I try to balance myself upright, throwing my frame into a bony S. As a result of contractures, one shoulder is higher than the other and I carry one arm bent in front of me, the fin­gers curled into a claw. My left arm and leg have wasted into pipe-­stems, and I try always to keep them covered. When I think about how my body must look to ­others, especially to men, to whom I have been trained to display myself, I feel ludicrous, even loathsome. At my age, however, I d ­ on’t spend much time thinking about my appearance. The burning egocentricity of adolescence, which assures one that all the world is looking all the time, has passed, thank God, and I’m generally too caught up in what I’m d ­ oing to step back, as I used to, and watch myself as though upon a stage. I’m also too old to believe in the accuracy of self-­ image. I know that I’m not a hideous crone, that in fact, when I’m rested, well dressed, and well made up, I look fine. The self-­loathing I feel is neither physically nor intellectually substantial. What I hate is not me but a disease. I am not a disease.

45

On Being a Cripple

And a disease is not—at least not singlehandedly—­going to determine who I am, though at first it seemed to be g­ oing to. Adjusting to a chronic incurable illness, I have moved through a pro­cess similar to that outlined by Elizabeth Kübler-­Ross in On Death and ­Dying. The major difference—­and it is far more significant than most p ­ eople recognize—is that I ­can’t be sure of the outcome, as the terminally ill cancer patient can. Research studies indicate that, with proper medical care, I may achieve a “normal” life span. And in our society, with its vision of death as the ultimate evil, worse even than decrepitude, the response to such news is, “Oh well, at least ­you’re not ­going to die.” Are ­there worse ­things than ­dying? I think that ­there may be. I think of two ­women I know, both with ms, both enough older than I to have served me as models. One took to her bed several years ago and has been ­there ever since. Although she can sit in a high-­backed wheelchair, ­because she is incontinent she refuses to go out at all, even though incontinence pants, which are readily available at any pharmacy, could protect her from embarrassment. Instead, she stays at home and insists that her husband, a small quiet man, a retired civil servant, stay ­there with her except for a quick weekly foray to the supermarket. The other ­woman, whose illness was diagnosed when she was 18, a nursing student engaged to a young doctor, finished her training, married her doctor, accompanied him to Germany when he was in the ser­vice, bore three sons and a d ­ aughter, now grown and gone. When she can, she travels with her husband; she plays bridge, embroiders, swims regularly; she works, like me, as a symptomatic-­patient instructor of medical students in neurology. Guess which ­woman I hope to be. At the beginning, I thought about having ms almost incessantly. And ­because of the unpredictable course of the disease, my thoughts w ­ ere always terrified. Each night I’d get into bed wondering ­whether I’d get out again the next morning, ­whether I’d be able to see, to speak, to hold a pen between my fin­gers. Knowing that the day might come when I’d be physically incapable of killing myself, I thought perhaps I ­ought to do so right away, while I still had the strength. Gradually I came to understand that the Nancy who might one day lie inert ­under a bedsheet, arms and legs para­lyzed, unable to feed or bathe herself, unable to reach out for a gun, a b ­ ottle of pills, was not the Nancy I was at pres­ent, and that I could not presume to make decisions for that ­future Nancy, who might well not want in the least to die. Now the only provision I’ve made for the ­future Nancy is that when the time comes—­and it is likely to come in the form of pneumonia, friend to the weak and the old—­I am not to be treated with machines and medi­cations. If she is unable to communicate by then, I hope she ­will be satisfied with ­these terms.

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Thinking all the time about having ms grew tiresome and intrusive, especially in the large and tragic mode in which I was accustomed to considering my plight. Months and even years went by without catastrophe (at least without one related to ms), and ­really I was awfully busy, what with George and ­children and snakes and students and poems, and I ­hadn’t the time, let alone the inclination, to devote myself to being a disease. Too, the richer my life became, the funnier it seemed, as though ­there ­were some connection between largesse and laughter, and so my tragic stance began to waver ­until, even with the aid of a brace and a cane, I ­couldn’t hold it for very long at a time. ­After several years I was satisfied with my adjustment. I had suffered my grief and fury and terror, I thought, but now I was at ease with my lot. Then one summer day I set out with George and the c­ hildren across the desert for a vacation in California. Part way to Yuma I became aware that my right leg felt funny. “I think I’ve had an exacerbation,” I told George. “What ­shall we do?” he asked. “I think we’d better get the hell to California,” I said, “­because Id ­ on’t know ­whether I’ll ever make it again.” So we went on to San Diego and then to Orange, up the Pacific Coast Highway to Santa Cruz, across to Yosemite, down to Sequoia and Joshua Tree, and so back over the desert to home. It was a fine two-­week trip, filled with friends and fair weather, and I ­wouldn’t have missed it for the world, though I did in fact make it back to California two years l­ater. Nor would t­ here have been any point in missing it, since in ms, once the symptoms have appeared, the neurological damage has been done, and ­there’s no way to predict or prevent that damage. The incident spoiled my self-­satisfaction, however. It renewed my grief and fury and terror, and I learned that one never finishes adjusting to ms. I ­don’t know now why I thought one would. One does not, a­ fter all, finish adjusting to life, and ms is simply a fact of my life—­not my favorite fact, of course—­but as ordinary as my nose and my tropical fish and my yellow Mazda station wagon. It may at any time get worse, but no amount of worry or anticipation can prepare me for a new loss. My life is a lesson in losses. I learn one at a time. And I had best be patient in the learning, since I’ll have to do it, like it or not. As any rock fan knows, you ­can’t always get what you want. Particularly when you have ms. You ­can’t, for example, get cured. In recent years researchers and the organ­izations that fund research have started to pay ms some attention even though it ­isn’t fatal; perhaps they have begun to see that life is something other than a quantitative phenomenon, that one may be very much alive for a very long time in a life that i­sn’t worth living. The

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On Being a Cripple

researchers have made some pro­gress ­toward understanding the mechanism of the disease: it may well be an autoimmune reaction triggered by a slow-­ acting virus. But they are nowhere near its prevention, control, or cure. And most of us want to be cured. Some, unable to accept incurability, grasp at one treatment ­after another, no m ­ atter how bizarre: megavitamin therapy, gluten-­free diet, injections of cobra venom, hypothermal suits, lymphocytopheresis, hyperbaric chambers. Many treatments are prob­ably harmless enough, but none are curative. The absence of a cure often makes ms patients ­bitter ­toward their doctors. Doctors are, a­ fter all, the priests of modern society, the new shamans, whose business is to heal, and many an ms patient roves from one to another, searching for the “good” doctor who ­will make him well. Doctors too think of themselves as healers, and for this reason many have trou­ble dealing with ms patients, whose disease in its intransigence defeats their aims and mocks their skills. Too few doctors, it is true, treat their patients as ­whole ­human beings, but the reverse is also true. I have always tried to be gentle with my doctors, who often have more at stake in terms of ego than I do. I may be frustrated, maddened, depressed by the incurability of my disease, but I am not diminished by it, and they are. When I push myself up from my seat in the waiting room and stumble ­toward them, I incarnate the limitation of their powers. The least I can do is refuse to press on their tenderest spots. This gentleness is part of the reason that I’m not sorry to be a cripple. I ­didn’t have it before. Perhaps I’d have developed it anyway—­how could I know such a ­thing?—­and I wish I had more of it, but I’m glad of what I have. It has opened and enriched my life enormously, this sense that my frailty and need must be mirrored in ­others, that in searching for and shaping a stable core in a life wrenched by change and loss, change and loss, I must recognize the same pro­cess, ­under individual conditions, in the lives around me. I do not deprecate such knowledge, however I’ve come by it. All the same, if a cure ­were found, would I take it? In a minute. I may be a cripple, but I’m only occasionally a loony and never a saint. Anyway, in my brand of theology God ­doesn’t give bonus points for a limp. I’d take a cure; I just ­don’t need one. A friend who also has ms startled me once by asking, “Do you ever say to yourself, ‘Why me, Lord?’ ” “No, Michael, I ­don’t,” I told him, “­because whenever I try, the only response I can think of is ‘Why not?’ ” If I could make a cosmic deal, who would I put in my place? What in my life would I give up in exchange for sound limbs and a thrilling rush of energy? No one. Nothing. I might as well do the job myself. Now that I’m getting the hang of it.

What You Mourn Sheila Black

The year they straightened my legs, the young doctor said, meaning to be kind, Now you ­will walk straight on your wedding day, but what he could not imagine is how even on my wedding day I would arch back and won­der about that body I had before I was changed, how I would have nested in it, made it my home, how I repeated his words when I wished to stir up my native anger feel like the exile I believed I was, imprisoned in a foreign body like a person imprisoned in a foreign land forced to speak a strange tongue heavy in the mouth, a mouth full of stones. Crippled they called us when I was young ­later the word was disabled and then differently abled, but ­those ­were all names given by outsiders, none of whom could imagine that the crooked body they spoke of, the body, which made walking difficult and ­running practically impossible, except as a kind of dance, a sideways looping like someone about to fall headlong down and hug the earth, that body

Sheila Black, “What You Mourn,” from Beauty Is a Verb: The New Poetry of Disability, edited by Jennifer Bartlett, Sheila Black, and Michael Northen, 212 (El Paso, TX: Cinco Puntos Press, 2011). Reprinted by permission of the author.

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What You Mourn

they tried so hard to fix, straighten was simply mine, and I loved it as you love your own country, the familiar lay of the land, the unkempt trees, the smell of mowed grass, down to the nameless flowers at your feet—­clover, asphodel, and the blue flies that buzz over them.

Physicians’ Juries for Defective Babies Helen Keller

sir: Much of the discussion aroused by Dr.  Haiselden when he permitted the Bollinger baby to die centers around a belief in the sacredness of life. If many of t­hose that object to the physician’s course would take the trou­ble to analyze their idea of “life,” I think they would find that it means just to breathe. Surely they must admit that such an existence is not worth while. It is the possibilities of happiness, intelligence, and power that give life its sanctity, and they are absent in the case of a poor, misshapen, para­lyzed, unthinking creature. I think ­there are many more clear cases of such hopeless death-­in-­life than the critics of Dr. Haiselden realize. The toleration of such anomalies tends to lessen the sacredness in which normal life is held. ­There is one objection, however, to this weeding of the ­human garden that shows a sincere love of true life. It is the fear that we cannot trust any mortal with so responsible and delicate a task. Yet have not mortals for long ages been entrusted with the decision of questions just as momentous and far-­ reaching; with kingship, with the education of the race, with feeding, clothing, sheltering and employing their fellow men? In the jury of the criminal court we have an institution that is called upon to make just such decisions as Dr. Haiselden made, to decide ­whether a man is fit to associate with his fellows, ­whether he is fit to live. It seems to me that the simplest, wisest ­thing to do would be to submit cases like that of the malformed idiot baby to a jury of expert physicians. An ordinary jury decides m ­ atters of life and death on the evidence of untrained and often prejudiced observers. Their own verdict is not based

Helen Keller, “Physicians’ Juries for Defective Babies,” from New Republic, December 18, 1915, 173–174.

Helen Keller wrentham, mass.

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Physicians ’ Juries for Defective Babies

on a knowledge of criminology, and they are often swayed by obscure prejudices or the eloquence of a prosecutor. Even if the accused before them is guilty, ­there is often no way of knowing that he would commit new crimes, that he would not become a useful and productive member of society. A ­mental defective, on the other hand, is almost sure to be a potential criminal. The evidence before a jury of physicians considering the case of an idiot would be exact and scientific. Their findings would be ­free [from the] prejudice and inaccuracy of untrained observation. They would act only in cases of true idiocy, where ­there could be no hope of ­mental development. It is true, the physicians’ court might be liable to abuse like other courts. The power­ful of the earth might use it to decide cases to suit themselves. But if the evidence ­were presented openly and the decisions made public before the death of the child, ­there would be ­little danger of ­mistakes or abuses. Anyone interested in the case who did not believe the child ­ought to die might be permitted to provide for its care and maintenance. It would be humanly impossible to give absolute guarantees for e­ very baby worth saving, but a similar condition prevails throughout our lives. Conservatives ask too much perfection of ­these new methods and institutions, although they know how far the old ones have fallen short of what they ­were expected to accomplish. We can only wait and hope for better results as the average of ­human intelligence, trustworthiness, and justice arises. Meanwhile we must decide between a fine humanity like Dr. Haiselden’s and a cowardly sentimentalism.

Blind, Deaf, and Pro-­Eugenics Helen Keller’s Advice in Context Raúl Necochea López

In December of 1915, The New Republic published a letter by deaf-­blind author and socialist activist Helen Keller, in which she defended medical decisions to euthanize infants with severe disabilities. Her letter came in the wake of the notoriety Dr. Harry J. Haiselden had acquired a­ fter urging the Bollinger ­family to allow their newborn, who suffered from several physical anomalies, to die. By the late 1910s, Haiselden, chief surgeon and president of the German-­American Hospital in Chicago, would become renowned for having allowed the deaths of at least six infants he diagnosed as “defectives.” Haiselden went as far as to display the ­dying infants to journalists and write about their physical malformations for newspapers published by tabloid mogul William Randolph Hearst. Haiselden also co­wrote and starred in a 1917 ­silent movie, The Black Stork, based on the ­actual planned death of an infant ­under his care. In that case, Haiselden had withheld a potentially life-saving surgery and actually attempted to comfort the infant’s f­amily by telling them their son “would have prob­ably grown into an imbecile and possibly a criminal.” On another occasion, Haiselden removed the stitches that tied the umbilical cord of another malformed newborn, letting it bleed to death. And on yet another, he prescribed potentially lethal doses of opiates for another malformed infant “taking longer than expected to die.” The quotes come from Martin Pernick’s engrossing book The Black Stork: Eugenics and the Death of “Defective” Babies in American Medicine and Motion Pictures since 1915. This story remains an example of how efforts to improve h ­ uman heredity (eugenics) became entwined with euthanasia. Haiselden insisted that he acted mercifully and in a socially responsible manner. A ­ fter all, in his view, severely malformed infants suffered. Moreover, by permitting them to live, Haiselden thought, he would have been burdening society with beings

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incapable of leading good and productive lives and who, if allowed to reproduce, would have led society down a path of degeneracy. Censured by some and defended by ­others, Haiselden was never accused of any crime. Helen Keller, embodying some severe disabilities herself, made for an unlikely high-­profile supporter of Haiselden’s actions and intentions. Many eugenicists in the early twentieth-­century US viewed disease as nature’s way of weeding out “the unfit.” Though most of their attacks ­were aimed at social welfare programs for permitting the “unfit” to endure, eugenicists also targeted medical interventions that could extend lives not worthy of being lived. Haiselden’s refusal to use the medical means at his disposal to assist an “unfit” infant played directly into the eugenic strategy of creating a healthier population by ridding society of its least robust and least promising members. Keller’s position was precisely that the sanctity of any life ­ought to be predicated upon its “possibilities of happiness, intelligence, and power.” Keller’s participation in this debate signals several t­ hings. First, scientists ­were not the only p ­ eople in the US discussing the issue of h ­ uman improvement through the manipulation of heredity and reproduction. Lay ­people, typically from the educated upper-­middle class, ­were far more numerous as members of eugenics socie­ties than ­were scientists or physicians in the 1900s and 1910s. Keller was one of t­hese educated lay ­people. Second, like most eugenicists, Keller held a deep and naïve faith in the ability of scientists to agree on the best course of action when it came to defining just what constituted a severe enough physical defect, hence her proposal for (death) panels of physicians to decide on individual candidates for euthanasia. Lack of agreement among scientists was a sign, for ­people such as Keller, not of the influence of cultural norms in scientific judgment, but simply of insufficient information or plain bad faith. Keller’s own disabilities are what make her letter especially poignant. Was Keller being so consistent with her own beliefs as to imply that someone like her had no place in society? Prob­ably not, as she had not been deaf and blind at birth, but became so ­after a bout of disease as a young child. Still, Haiselden’s case and Keller’s defense of his actions raise tough and old questions about the nature of disabilities. What does that term refer to? Can some “severe disabilities” amount, as Keller argued, to “a hopeless death-­in-­ life”? How does one go about preventing or treating such cases? What makes a person unfit for society? Who has the authority to decide the chances and the choices of ­people with disabilities?

Tell Me, Tell Me Irving Kenneth Zola

Now I was the one who was ner­vous. ­Here we ­were alone in her room thousands of miles from my home. “Well, my personal care attendant is gone, so it w ­ ill all be up to you,” she said sort of puckishly, “­Don’t look so worried! I’ll tell you what to do.” This was a real turnabout. It was usually me who reassured my partner. Me who, a­ fter putting aside my cane, and removing all the clothes that masked my brace, my corset, my scars, my thinness, my body. Me who’d say, “Well, now you see ‘the real me.’ ” How often I’d said that, I thought to myself. Saying it in a way that hid my basic fear—­that this real me might not be so nice to look at . . . ​might not be up to “the task” before me. She must have seen something on my face, for she continued to reassure me, “­Don’t be afraid.” And as she turned her wheelchair t­oward me she smiled at me that smile that first hooked me a few hours before. “Well,” she continued, “first we have to empty my bag.” And with that brief introduction we approached the bathroom. Anger quickly replaced fear as I realized she could get her wheelchair into the doorway but not through it. “Okay, take one of t­ hose cans,” she said pointing to an empty Sprite, “and empty my bag into it.” Though I’d done that many times before it ­wasn’t so easy this time. I quite simply ­couldn’t reach her leg from a sitting position on the toilet and she ­couldn’t raise her foot ­toward me. So down to the floor I lowered myself and sat at her feet. Rolling up her trouser leg I fumbled awkwardly with the clip sealing the tube. I looked up at her and she laughed, “It ­won’t break and neither ­will I.” I got it open and her urine poured into the can. Suddenly I felt a quiver in my stomach. The smell was more overpowering than I’d expected. But I was too Irving Kenneth Zola, “Tell Me, Tell Me,” from Ordinary Lives: Voices of Disability and Disease, ed. Irving Kenneth Zola (Cambridge, MA: Applewood Books, 1982). Reprinted by permission.

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embarrassed to say anything. Emptying the contents into the toilet I turned to her again as she backed out. “What should I do with the can?” I asked. “Wash it out,” she answered as if it w ­ ere a silly question. “We try to recycle every­thing around ­here.” Proud of our first accomplishment we headed back into the room. “Now comes the fun part . . . ​getting me into the bed.” For a few minutes we looked for the essential piece of equipment—­the transfer board. I laughed silently to myself. I seemed to always be misplacing my cane—­that constant reminder of my own physical de­pen­dency. Maybe for her it was the transfer board. When we found it leaning against the radiator I reached down to pick it up and almost toppled over from its weight. Hell of a way to start, I thought to myself. If I c­ an’t lift this, how am I g­ oing to deal with her? More carefully this time, I reached down and swung it onto the bed. She parallel parked her wheelchair next to the bed, grinned, and pointed to the side arm. I’d been this route before, so I leaned over and dismantled it. Then with her patient instructions I began to shift her. The board had to be placed with the wider part on the bed and the narrower section slipped ­under her. This would eventually allow me to slip her across. But I could do ­little without losing my own balance. So I laid down on the mattress and shoved the transfer board ­under her. First one foot and then the other I lifted ­toward me till she was at about a 45 degree ­angle in her wheelchair. I was huffing but she sat in a sort of bemused silence. Then came the scary part. Planting myself as firmly as I could ­behind her, I leaned forward, slipped my arms u ­ nder hers and around her chest and then with one heave hefted her onto the bed. She landed safely with her head on the pillow, and I joined her wearily for a moment’s rest. For this I should have gone into training, I smiled silently. And again, she must have understood as she opened her eyes even wider to look at me. What beautiful eyes she has, I thought, a brightness heightened by her very dark thick eyebrows. “­You’re blushing again,” she said. “How can you tell that it’s not from exhaustion?” I countered. “By your eyes . . . ​­because ­they’re twinkling.” I leaned over and kissed her again. But more mutual appreciation would have to wait, ­there was still work to be done. The immediate task was to plug her wheelchair into the portable recharger. This would have been an easy task for anyone except the technical idiot that I am. “Be careful,” she said. “If you attach the wrong cables you might shock yourself.”

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I laughed. A shock from this battery would be small compared to what I’ve already been through. But even this attaching was not so easy. I ­couldn’t read the instructions clearly, so down to the floor I sank once more. ­After several tentative explorations, I could see the gauge registering a positive charge. I let out a ­little cheer. She turned her head t­oward me and looked down as I lay stretched out momentarily on the floor, “Now the real fun part,” she teased. “You have to undress me.” “Ah, but for this,” I said in my most rakish tones, “­we’ll have to get closer together.” My graceful quip was, however, not matched by any graceful motion. For I had to crawl on the floor u ­ ntil I could find a chair onto which I could hold and push myself to a standing position. As I fi­nally climbed onto the bed, I said, “Is this trip ­really necessary?” I ­don’t know what I intended by that remark but we both laughed. And as we did and came closer, we kissed, first ­gently and then with increasing force ­until we said almost si­mul­ta­neously, “We’d better get undressed.” “Where should I start?” I asked. My own question struck me as funny. It was still another reversal. It was something I’d never asked a w ­ oman. But on t­ hose rare occasions on which I’d let someone undress me, it was often their first question. “Wherever you like,” she said in what seemed like a coquettish tone. I thought it would be best to do the toughest first, so I began with her shoes and socks. Th ­ ese ­were easy enough but not so her slacks. Since she could not raise herself, I alternated between pulling, tugging, and occasionally lifting. Slowly over her hips, I was able to slip her slacks down from her waist. By now I was sweating as much from anxiety as exertion. I was concerned I’d be too rough and maybe hurt her but most of all I was afraid that I might inadvertently pull out her catheter. At least in this anxiety I was not alone. But with her encouragement we again persevered. Slacks, underpants, corset all came off in not so rapid succession. At this point a dif­fer­ent kind of awkwardness struck me. ­There was something about my being fully clothed and her not that bothered me. I was her lover, not her personal care attendant. And so I asked if she minded if I took off my clothes before continuing. I explained in a half-­truth that it would make it easier for me to get around now ‘without all my equipment.’ “Fine with me,” she answered and again we touched, kissed, and lay for a moment in each other’s arms.

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Pushing myself to a sitting position I removed my own shirt, trousers, shoes, brace, corset, ban­dages, undershorts u ­ ntil I was comfortably nude. The comfort lasted but a moment. Now I was embarrassed. I realized that she was in a position to look upon my not so beautiful body. My usual defensive sarcasm about ‘the real me’ began somewhere back in my brain but this time it never reached my lips. “Now what?” was the best I could come up with. “Now my top . . . ​and quickly. I’m roasting in all ­these clothes.” Id ­ idn’t know if she was serious or just kidding but quickness was not in the cards. With ­little room at the head of the bed, I simply could not pull them off as I had the rest of her clothes. “Can you sit up?” I asked. “Not without help.” “What about once ­you’re up?” “Not then ­either . . . ​not ­unless I lean on you.” This time I felt ingenious. I locked my legs around the corner of the bed and then grabbing both her arms I yanked her to a sitting position. She made it but I d ­ idn’t. And I found her sort of on top of me, such a tangle of bodies we could only laugh. Fi­nally, I managed to push her and myself upright. I placed her arms around my neck. And then, ­after the usual tangles of hair, earrings, and protestations that I was trying to smother her, I managed to pull both her sweater and blouse over her head. By now I was no longer being neat, and with an apology threw her garments ­toward the nearest chair. Naturally I missed . . . ​but neither of us seemed to care. The bra was the final piece to go, and with the last unhooking we both plopped once more to the mattress. For a moment we just lay ­there but as I reached across to touch her, she pulled her head back mockingly, “­We’re not through yet.” “You must be kidding!” I said, hoping that my tone was not as harsh as it sounded. “I still need my booties and my night bag.” “What are they for?” I asked out of genuine curiosity. “Well my booties—­those big rubber ­things on the ­table—­keep my heels from rubbing and getting irritated and the night bag . . . ​well that’s so we ­won’t have to worry about my urinating during the night.” The booties I easily affixed, the night bag was another m ­ atter. Again it was more my awkwardness than the complexity of the task. First, I removed the day bag, now emptied, but still strapped around her leg and replaced it

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with the bigger night one. Careful not to dislodge the catheter I had to find a place lower than the bed to attach it so gravity would do the rest. Fi­nally, the formal work was done. The words of my own thoughts bothered me, for I realized that t­here was part of me that feared what “work” might still be ahead. She was not the first disabled ­woman I’d ever slept with but she was, as she had said earlier, “more physically dependent than I look.” And she was. As I prepared to s­ ettle down beside her, I recalled watching her earlier in the eve­ning over dinner. Except for the fact that she needed her steak cut and her cigarette lit, I ­wasn’t particularly conscious of any dependence. In fact quite the contrary, for I’d been attracted in the first place to her liveliness, her movements, her way of tilting her head and raising her eyebrows. But now it was dif­fer­ent. This long pro­cess of undressing reinforced her physical de­pen­dency. But before I lay down again, she interrupted my associations. “You’ll have to move me. I d ­ on’t feel centered.” And as I reached over to move her legs, I let myself fully absorb her nakedness. Lying ­there she somehow seemed bigger. Maybe it was the lack of muscle tone—if that’s the word—­but her body seemed somehow flattened out. Her thighs and legs and her breasts, the latter no longer firmly held by her bra, flapped to her side. I felt guilty a moment for even letting myself feel anything. I was as anxious as hell but with no wish to flee. I’m sure my face told it all. For with her eyes she reached out to me and with her words ­gently reassured me once again, “­Don’t be afraid.” And so as I lay beside her we began our loving. I was awkward at first, I ­didn’t know what to do with my hands. And so I asked. In a way it was no dif­fer­ent than with any other w ­ oman. In recent years, I often find myself asking where and how they like to be touched. To my questions she replied, “My neck . . . ​my face . . . ​especially my ears. . . .” And as I drew close she swung her arms around my neck and clasped me in a surprisingly strong grip. “Tighter, tighter, hold me tighter,” she laughed again. “I’m not fragile. . . . ​ I ­won’t break.” And so I did. And as we moved I found myself naturally touching other parts of her body. When I realized this I pulled back quickly, “I d ­ on’t know what you can feel.” “Nothing ­really in the rest of my body.” “What about your breasts,” I asked rather uncomfortably. “Not much . . . ​though I can feel your hands ­there when you press.”

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And so I did. And all went well u ­ ntil she told me to bite and squeeze harder, then I began to shake. Feeling the quiver in my arm, she again reassured me. So slowly and haltingly where she led, I followed. I ­don’t know how long we continued kissing and fondling, but as I lay buried in her neck, I felt the heels of her hands digging into my back and her voice whispering, “tell me . . . ​tell me.” Suddenly I got scared again. Tell her what? Do I have to say that I love her . . . ? Oh my God. And I pretended for a moment not to hear. “Tell me . . . ​tell me,” she said again as she pulled me tighter. With a deep breath, I meekly answered, “Tell you what?” “Tell me what y­ ou’re ­doing,” she said softly, “so I can visualize it.” With her reply I breathed a sigh of relief. And a narrative voyage over her body began; I kissed, fondled, caressed e­ very part I could reach. Once I looked up and I saw her with her head relaxed, eyes closed, smiling. It was only when we stopped that I realized I was unerect. In a way my penis was echoing my own thoughts. I had no need to thrust, to fuck, to quite simply go where I ­couldn’t be felt. She again intercepted my own thoughts—­“Move up, please put my hands on you,” and as I did I felt a rush through my body. She drew me ­toward her again ­until her lips ­were on my chest and ­gently she began to suckle me as I had her a few minutes before. And so the hours passed, ears, mouths, eyes, tongues inside one another. And ­every once in a while she would quiver in a way which seemed orgasmic. As I thrust my tongue as deep as I could in her ear, her head would begin to shake, her neck would stretch out and then her w ­ hole upper body would release with a sigh. Fi­nally, at some time well past one we looked exhaustedly at one another. “Time for sleep,” she yawned, “but t­ here is one more task—an easy one. I’m cold and dry so I need some hot ­water.” “Hot ­water!” I said rather incredulously. “Yup, I drink it straight. It’s my one vice.” And as she sipped the drink through a long straw, I closed my eyes and curled myself around the pillow. My drifting off was quickly stopped as she asked rather archly, “You mean y­ ou’re ­going to wrap yourself around that rather than me?” I was about to explain that I rarely slept curled around anyone and certainly not vice versa, but I thought better of it, saying only, “Well, I might not be able to last this way all night.”

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“Neither might I,” she countered. “My arm might also get tired.” We pretended to look at each other angrily but it d ­ idn’t work. So we came closer again, hugged, and curled up as closely as we could, with my head cradled in her arm and my leg draped across her. And much to my surprise I fell quickly asleep—­unafraid, unsmothered, and more importantly rested, cared for, and loved.

Instructions to Hearing Persons Desiring a Deaf Man Raymond Luczak

His eyebrows cast shadows everywhere. You are a difficult language to speak. His long beard is thick with distrust. You are another curiosity seeker. His hands are not cheap trinkets. Entire lives have been wasted on you. His face is an inscrutable promise. You are nothing but paper and ink. His body is more than a secret language. Tourists are rarely fluent in it. His eyes ­will flicker with a bright fire when you purge your passport of sound. Let your hands be your new passport, for he ­will then stamp it with approval. A deaf man is always a foreign country. He remains forever a language to learn.

Raymond Luczak, “Instructions to Hearing Persons Desiring a Deaf Man,” from Beauty Is a Verb: The New Poetry of Disability, ed. Jennifer Bartlett, Sheila Black, and Michael Northen, 225 (El Paso, TX: Cinco Puntos Press, 2011). Reprinted by permission of the author.

I Have Diabetes. Am I to Blame? Rivers Solomon

My fingertips are bruised and polka-­dotted black ­because I am, yet again, getting back on track. A three-­month bender of unbridled carbohydrate ingestion has left me a skinsack. I am made of headaches, nausea, vomiting, and fatigue. ­After 10, 12 hours of sleep, I still need a nap ­because I awake hourly in the night, alternating between trips to the kitchen to guzzle diet soda, iced tea, or ­water and trips to the rest­room to urinate it all out. I swear that this time discipline, grit, and force of ­will—­three qualities that have always seemed elusive—­will reign. The glucose meter w ­ ill be my new clock. My life ­will revolve around its numerical output. ­After ­every meal or snack, I w ­ ill punch a button on the pager-­size meter, setting a brief click-­clack of machinery in motion before a lancet thrusts into my toughened skin. ­Because my fingertips have become calloused from years of this, it ­will sometimes take several pricks before the lancet draws enough blood to register. Though I’ve done this thousands of times, I still wince at e­ very jab. I think of medical leeches. I think of bloodletting. It is strange to live in a world where making oneself bleed is the first step to healing. My sugar-­thickened blood reminds me of unrefined petroleum. Lost in one of my many delusions, I won­der if I’m not a ­human but a gummed-up robot—­the model discontinued ­because its body ­couldn’t understand the most basic and necessary of pro­cesses: converting food into fuel. Soon I ­will resume the ritual of multiple daily stabbings. I ­will make a shopping list full of foods I’m not particularly fond of. I’ll design a workout plan to accommodate my increasingly troublesome left knee. I’ll swallow pills that make my stomach and bowels spasm. I ­will inject insulin. I’ve been diabetic for about six years, since age 22. Type 2, I have to add. I am young but fat, so ­people won­der if I have the sort of diabetes that just Rivers Solomon, “I Have Diabetes. Am I to Blame?,” from New York Times, October 12, 2016. Copyright © 2016 by The New York Times Com­pany. Reprinted by permission.

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happens for no reason, typically to very young ­people, or if I have the sort that I brought on myself through what ­people perceive as a lack of willpower and self-­control. Culturally, this disease straddles the line between malignant and benign. On the one side, t­here’s the obvious suffering—­amputation, heart disease, blindness—­side effects of constantly inflamed blood vessels. On the other, ­there’s just diet and exercise, that’s all it takes, and oral drugs and insulin. ­There’s you seem fine. ­There’s the invisibility of the deeply dedicated management it requires. Diabetes mellitus is a class of metabolic conditions characterized by high blood sugar. The hormone insulin is the vehicle by which sugar—­that much-­ disparaged substance—­enters our cells from the blood. In Type 1 diabetes, the pancreas no longer produces insulin, which means that sugar has no means to enter cells. In Type 2 diabetes, insulin re­sis­tance means that even though insulin is being produced, cells do not respond to it. While the ­causes are not completely understood, some combination of ge­ne­tic predisposition and environmental f­actors including diet, exercise, and stress c­ auses the cells to need more and more insulin to be able to take up sugar from the blood. Weight and diet play a part in developing Type 2 diabetes, but ge­ne­tics is also a f­actor. As with most diseases and disorders, diabetes has a cascading effect on the body. ­Every chronic illness, disease, and disability carries with it misunderstandings. Too often society paints disability as a personal failing. A person with chronic pain in her legs, who is not para­lyzed but chooses to use a wheelchair, may be seen as weak or lazy. I’ve found my fatness compounds this phenomenon. My body is visibly off kilter, a symbol for lethargy, lack of self-­regulation, ill health, indolence. Combine this with the misbelief that ­there is a cure for diabetes—­that cure being willpower—­and every­one is suddenly an expert on how to fix me. It’d be impossible not to internalize that I am to blame. Th ­ ere is the issue of my blackness, too, which many, ­because of unconscious bias, interpret as inherently lazy, deviant, sick, unclean. I’ve always known my body needed transforming—or that other ­people thought it did. I was teased and rejected for my body throughout my years in school. I ­wasn’t fat as a child, but I was big. Extraordinarily tall for my age (4-­foot-11 in the first grade) and broad-­shouldered, I might have excelled at contact sports but I ­wasn’t built for the ballet I longed to do. I saw the attention my grand­mother lavished on my skinny cousin contrasted against the frustration she expressed shopping for clothes that fit me. My m ­ other was

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thankfully kind and nonjudgmental, but when I visited my ­father over the summers, he put me on grueling diets, including one where I ­couldn’t eat solid foods before midday. I had started dieting at the age of six. My m ­ other briefly explained calories to me ­because it had come up in an unrelated conversation. The next time I ate a slice of bread, I immediately got on our ­family treadmill ­until the number on the monitor denoting calories burned matched the number of calories per slice on the package. In ­later years, I’d secretly drink sample ­bottles of perfume to try to make myself vomit. ­Today, when I do manage to control my diabetes, it’s at the cost of almost ­every other ele­ment of my life. E ­ very bite I ingest requires a complex algorithm, calculating ratios of carb to fat to sugar to insulin to the amount of walking I’ve done. Even when my math is perfect, my sugars rebel. I often fall into dangerous lows (a side effect of taking too much insulin, which sends blood sugar plummeting). I eat an apple to bring my sugar up, and suddenly it’s too high again. Low-­carbohydrate diets barely work for me. Even the sugar in a serving of broccoli sends my sugars to uncomfortable highs. I get anxious at parties, at restaurants out with ­family. Meat, potentially one of the diabetic’s safest foods, is often slathered in sugary barbecue sauce or honey glaze. I weep into my partner’s arms when I realize that this level of control is not sustainable. She’s been with me since I first got the diagnosis, and a­ fter the grief passed, she asked me, “What do you need me to do?” I know she’s concerned about my longevity, but she ­doesn’t put that concern before my need for a companion who’s not overly invested in my ­every food choice. Her gentle support ­isn’t always enough. Diabetes demands perfection, and I am the most imperfect person I know. When eating becomes this exhausting, I simply refrain from food altogether. ­There is no more surefire way to blood-­glucose control than starvation, and I’ve gone months eating only a small bowl of chicken soup a day, had doctors praise my impressive management. The extremism with which I tackle diabetes management is directly related to the extremism I apply to food in general. A lifetime of dieting, a lifetime of being told my body is wrong, takes its toll, and I ­can’t help conflating the messages that I am better off starved than fat. Maybe if I could let go of the shame, or more impor­tant, if the media, doctors, friends, ­family could stop shaming me, managing my diabetes w ­ ouldn’t be this roulette wheel of self-­torture. Maybe then, I could fi­nally let go and heal.

Twisted Lies My Journey in an Imperfect Body Sherri G. Morris

We are the new ­couple on the block, our living room skirted by dozens of unpacked cartons. Our neighbors take pity on us, bringing over tuna noodle casserole, cleaning supplies, and paper towels. We have a marriage certificate, a mortgage, one too many small appliances, and a stack of unmailed thank-­you notes. I am Sherri, he is Richard. In short, we are typical newlyweds. Typical, that is, except for one tiny detail: in our marriage, t­here are two Y chromosomes. Other ­couples with two Y chromosomes generally started out life as Richard and Richard, not Richard and Sherri. But in my case, I have been Sherri since birth. Indeed, my birth in 1958 was undistinguished, as I appeared to be an ordinary, healthy baby girl. Approximately two weeks ­after I was born, however, my pediatrician noticed that my groin area was oddly distended ­after routine feedings. My medical rec­ords from that period show that he concluded that I had some type of hernia, for which he referred my parents to an appropriate surgeon to have it repaired. When the surgeon began to operate, he discovered what appeared to be two suspicious-­looking gonads in my inguinal area. He biopsied one of them, suspecting that they ­were not ovaries. Lab tests confirmed his suspicion: my gonads w ­ ere, in fact, testes. My rec­ords state that the surgeon then did a buccal smear to check for Barr bodies (which appear only in the cells of ge­ne­tic females). The test was negative, revealing that I had a Y chromosome. Sherri  G. Morris, “Twisted Lies: My Journey in an Imperfect Body,” from Surgically Shaping ­Children: Technology, Ethics, and the Pursuit of Normality, ed. Erik Parents, 1–12 (Baltimore: Johns Hopkins University Press, 2006). Copyright © 2006 The Johns Hopkins University Press. Reprinted by permission of Johns Hopkins University Press.

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Even in 1958 my treating physicians understood that this meant that I had been born with a rare ge­ne­tic disorder, known at the time as testicular feminization syndrome and now known as androgen insensitivity syndrome (ais). ­Because of an X-­linked androgen receptor defect, my body does not respond to testosterone (in my case, the re­sis­tance to androgens is complete), the consequence of which is that during gestation I did not virilize. At the same time, by virtue of having a Y chromosome, I developed testes, which produced anti-­Müllerian hormone, dissolving my rudimentary Müllerian ducts. This means that I lack a uterus, fallopian tubes, or a cervix, the normal complement of internal female organs. At the time I was born (and, disturbingly, even in many places ­today), it was the common practice to remove the testes at birth, the putative concern being that they have a risk of becoming cancerous. In truth, this risk is virtually non­ex­is­tent ­until well ­after puberty, but I believe that removing my testes satisfied an equally compelling psychological need to render my body congruent, particularly given that it must have been profoundly worrisome to my parents to have a female-­looking child with male gonads. Sadly, my parents ­were not offered any type of emotional counseling to help them parse the distressing fact of having a child labeled, as my medical rec­ords show I was, a pseudo-­hermaphrodite. Instead, my diagnosis was considered a tragic m ­ istake of nature by both my physicians and my parents. Given that I looked normal, however, my parents undoubtedly took solace in that they did not ever have to reveal the truth about my body to friends or relatives, and could keep it a secret even from immediate f­ amily members. Having not had an opportunity to work through their own shame and guilt at having a child born with an intersex condition, my parents ­were even less able to develop any kind of game plan to disclose the details about such a fact to me. Instead, they ­were advised by my pediatric endocrinologist to tell me I had a s­ imple hernia when, as a young child, I discovered the abdominal scar just above my pubic region. They ­were then to say nothing again ­until the eve of puberty, at which time they should tell me that I had “twisted ovaries,” which had been removed at birth to prevent them from becoming cancerous. I’m not convinced that even at that point in my life they would have other­wise said anything, but at puberty I had to start taking hormone replacement therapy (Premarin) and so it became necessary to offer some explanation about why I suddenly needed to visit an endocrinologist and take a daily pill.

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I recall the day my ­mother told me the “twisted ovaries” lie. I remember it not only b ­ ecause I quickly surmised that this meant that I would never be able to have biological c­ hildren, a devastating blow, but also b ­ ecause the word cancer almost eclipsed the rest of the limited information I received. I was worried that my “ovaries” ­were not removed as a prophylactic mea­sure to prevent cancer, but that I instead actually had cancer and that my parents just ­weren’t telling me the truth. ­There are two other significant ­things about that fateful day when I was 11. It was the only time for the next 25 years that ­there was any mention at all about my medical condition, other than my m ­ other periodically reminding me to fill the prescription for Premarin or telling me that ­she’d scheduled another appointment with the endocrinologist. For 25 years the entire ­matter was swept u ­ nder the rug, without any expectation that I would need outside support to help me cope with the fact that I did not have a normal puberty, would never have biological c­ hildren, and had an abnormally short vagina, a detail con­ve­niently omitted on that day but which I discovered myself at age 14 when out of curiosity I tried to insert a tampon into my vagina. The other remarkable t­hing about the “twisted ovaries removed to prevent them from becoming cancerous” lie was that years l­ater, ­after I met many other ­women with ais from many other countries, I learned that this same t­ hing had been told to them. I call it “the lie heard round the world.” It is hard to imagine that endocrinologists of ­every stripe ­were instructed during their medical education that this lie would yield a better psychological outcome than the truth. Perhaps it seems strange, but during early adolescence it was not infertility that troubled me the most. Instead, I was crushed not to get my period, as I looked forward to this threshold event since seeing a film in fifth grade describing the wonderful changes that supposedly soon would be happening to my body. Menstruation is a coming-­of-­age rite for adolescent females, and my friends would inevitably discuss the subject in intimate conversation. “Did you get yours?” became the question-­du-­jour in seventh grade, and I had to lie, feeling inadequate and ashamed the ­whole time. Shortly ­after starting college, in the pre-­aids and pre-­herpes 1970s, the question shifted to w ­ hether I had had sex, a significant topic of conversation for early-­stage freshmen of my generation. I started college shortly before my 17th birthday, and it was overwhelming to learn that all of my friends ­were sexually active, while I could not see how I would ever have sex given

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my anatomical limitations and attendant feelings of being undesirable and unacceptable. Also during college the plot thickened as I discovered that t­here was something more ­going on than just not having ovaries. I was unable to get home to see my endocrinologist one semester, and went to the college infirmary to try to get a prescription for Premarin. I knew this was risky business ­because questions would be asked before handing me a prescription, but my ­mother insisted I have a prescription filled and I knew she would make me show her the b ­ ottle at my next visit home. I was not prepared, however, for the very first question the college doctor asked me. She inquired ­whether I had a uterus, perhaps b ­ ecause—as I only understood years l­ater—­she wanted to know ­whether I’d had a hysterectomy and needed just estrogen or also required progesterone. I had to reveal that I d ­ idn’t know w ­ hether I had a uterus, whereupon she took me into an examining room. I cannot imagine, and do not recall, how she was able to do any kind of examination, ­because only a child-­sized speculum would have fit inside me at the time. Nonetheless, the examination concluded, and she handed me a prescription without telling me anything about my uterus. I was shaking as I steeled myself to inquire about ­whether I indeed did have one, and she said “no” without further explanation. I left the infirmary with my head spinning, tears streaming down my face as I headed back to my dorm room. It was the last time I ever went to any doctor for any reason other than the flu for the next eigh­teen years. Shortly ­after arriving at law school I found myself studying in the all-­ night medical school library ­after the law library closed. It ­didn’t take long for curiosity to get the better of me, and I started rooting around in the stacks of medical texts in search of information about my “twisted ovaries.” I suspected that I had not been told the truth—or at least the w ­ hole truth—­ and needed to unearth the particulars about why I had no pubic or underarm or leg hair, why t­ here was a scar r­ unning laterally across my bikini line, and why my “ovaries” would have become twisted in the first place. I began by researching the c­ auses of primary amenorrhea and hit pay dirt fairly quickly, stumbling upon a list of clinical features for a condition then known as testicular feminization syndrome. Any lingering doubts about ­whether I had reached a correct diagnosis w ­ ere erased when I saw the accompanying pictures of young female patients (their eyes notably blacked out but their genitals in sharp focus) who had the condition. The stark absence of pubic hair made me confident that I too had this syndrome.

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The information I read was both shocking and oddly satisfying. To that point I had always considered myself unequivocally female, even though my inability to menstruate or have ­children made me feel like “damaged goods.” It was a stunning blow to discover that I had xy chromosomes and testes. To my mind at the time, it meant that I w ­ asn’t truly female at all, and that in some sense my ­whole life was a charade. Yet even in the midst of such angst t­ here was an ele­ment of relief. When I was 11 and was told that my “ovaries” had been removed b ­ ecause they w ­ ere twisted and could have become cancerous, I was left with a lingering fear that I was secretly d ­ ying of cancer and that no one was telling me the truth about it. When I realized that my testes had likely been surgically removed in infancy, and this explained the scar above my genitals, it at least quelled such concern about my having cancer. This newfound information also pieced together the cryptic puzzle of my life into a more understandable w ­ hole. Rather than seeing myself as a one-­ off freak, I felt reassured that this was a known quantity—­a condition that had a name and of which I was not the only sufferer. At the same time, the newly unearthed dark truths about my chromosomes and gonads ­were too much for me to ­handle alone. Yet it was impossible for me even to contemplate sharing this information with another living soul. I did what any rational first-­year law student would do when confronted with any overwhelming personal obstacle: I tucked the information away into the deep recesses of my mind, put my nose to the grindstone, and made law review instead. Throughout my 20s and most of my 30s I continued this pattern of overachievement at work and suppression of my terrible personal secret, even to myself. The best way to describe it is to say that I felt painted into a corner from which I could see no way out. Although gregarious by nature, I knew that I could never share the truth about myself with any friend, much less a romantic partner. For that reason I began, and then quickly aborted, relationships with men as I firmly believed that if they saw my absence of pubic hair they would not only recoil in horror, but also ask questions I was unequipped to answer. ­There was, to a somewhat lesser extent, a similar isolation from even my female friends. I was afraid that they would discover my non­ex­is­tent knowledge about periods, and both marriage and ­children, topics that inevitably would come up in conversation, seemed completely beyond my reach. I never allowed myself to change in a locker room or anywhere ­else where

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someone might catch a glimpse of my juvenile-­looking nipples and anomalous genitals. Always, I was left with the overarching sense that if p ­ eople knew the real truth about me, they ­wouldn’t like me at all. The toll on my self-­image was profound. Ultimately, however, it was neither the discovery of my ge­ne­tics nor the particulars of the syndrome itself that caused me sustained psychological difficulty. Instead, the realization that I had been told lies by ­those from whom I had a right to expect the truth—my parents—­left me sad and angry in equal mea­sure. This breach of trust communicated to me that ­there was something shameful and unacceptable about my body even to t­hose from whom I expected unconditional ac­cep­tance. Sadly, my parents ­were acting on the recommendation of my pediatric endocrinologist, who, at best, likely took no more than one or two courses in psy­chol­ogy during his training. During this same protracted period I found myself rehashing incidents related to the medical management of my case. It was clear that my endocrinologist was uncomfortable with my visits to his office, no doubt ­because he was an active participant in keeping the truth from me and therefore not only needed to be careful about what he said, but also needed to have fabricated answers at the ready should I ask questions. Rather than fostering a healthy doctor-­patient relationship, his communications ­were stilted and opaque. This meant that even as a l­ater adolescent, I was unable to become an informed and active participant in my care. But by far the most disturbing of my recollections was of being on an examining ­table while interns and residents “inspected” me, all the while discussing the particulars of my anatomy in medical jargon I could not understand. Adolescence is an awkward body image time ­under the best of circumstances, and for t­ hose born with any physical anomaly, this awkwardness is undoubtedly compounded. But rather than mitigating my body image challenges, being put on display in this manner made me feel ashamed, freakish, and certainly “unfit for ­human consumption” in any sexual sense. The loss of control in having o ­ thers comment on and touch my body, while I was expected to lie still and s­ ilent, felt to me like rape. This was not done in furtherance of my “treatment,” but rather in furtherance of an intern’s medical education. Physician training is impor­tant, but can such examinations be justified if they leave the patient feeling v­ iolated? Low self-­esteem, shame, and isolation are inevitable byproducts of a medical paradigm founded on lying to the patient about her condition, creating an environment in which the patient is discouraged from gaining an understanding of her body, allowing o ­ thers to inspect and comment on

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her body, not offering counseling and support to work through the feelings of grief and anger, and keeping the patient isolated from other individuals with whom she shares a common experience. I believe that to provide expert diagnoses and treatment without placing the patient at the center of the protocol is more than just insensitive—it is bad medicine, particularly when patient compliance is necessary. I routinely flushed the pills I had been prescribed (in my case, Premarin) down the toilet, asserting the only control I had over the helplessness I felt. Having received no clear explanation of why I needed this prescription, I w ­ asn’t onboard and informed about the consequences of not taking it. But the incremental harm I was d ­ oing to my body by not taking the pills would certainly have been outstripped by the more immediate harm I contemplated ­doing to myself. The per­sis­tent helplessness and hopelessness I felt, compounded by tremendous shame and coupled with the detachment of not having anyone with whom I could share this onerous secret, caused me to give serious consideration to ending my life. In the back of my mind, however, was a profound and almost desperate wish to meet someone e­ lse like myself before I died. Whenever I would hear about someone who c­ ouldn’t have ­children, I wondered if she too had “twisted ovaries.” Much like an a­ dopted child in search of a biological parent, I would walk down the street and look into p ­ eople’s eyes, wondering if we shared a common ge­ne­tic link (in this case, the X-­linked recessive trait for ais). This primordial need to connect with someone who understood what it was like to walk in my shoes might have gone unmet had I not heeded what can only be described as a small voice inside me prompting me to go a medical school library on the morning of December 26, 1994. In the past I had periodically gone to the library in search of information about ais (as I had come to understand my condition was called), though I often left frustrated having found only articles highlighting new research into the androgen receptor gene without any discussion of the psychological challenges faced by patients who lived with this disorder. But on that date my world changed when I stumbled across a letter published in the British Medical Journal by another ­woman with ais. The anonymous letter not only recounted a life experience that was hauntingly similar to my own, but also held out the possibility that someday I would meet someone who was like me. That possibility became even more of a real­ity when, in a ­later issue of the same journal (which I discovered ­later that same day), I saw a response to the first letter. This second letter

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provided information about a newly formed support group, based in the United Kingdom, for ­women with ais. Holding in my hands the telephone number and other contact information for the support group, I had to retire to a nearby study carrel, where I began crying with an intensity I had never before experienced. The best way I can describe it is to say that I had been shipwrecked on an uninhabited island for thirty-­five years and in that moment discovered that t­here was another person on the island and that she had a lifeboat. The journey from that after­noon in 1994 ­until the pres­ent has been extraordinary. In early 1995 I traveled to the United Kingdom to attend the first or­ga­nized meeting of the support group. A member of the group graciously offered to meet my plane at Heathrow airport, and ­there for the first time I stood side by side with someone who knew—­knew what it was like to have a body that looked and felt like mine, and knew the same secrecy and silence and lies and shame that had been the hallmarks of my existence. My life in earnest had begun. Following that initial meeting, I attended several more meetings of the UK group, whereupon I established a similar support group in the United States. Having found help for myself, I felt it impor­tant to ensure that other ­women with ais have access to the same kind of information and support. But t­here was a second, and perhaps even more impor­tant, motivation for forming the group: to ensure that other adolescents not spend years feeling alone and afraid, burdened by a secret and unable to form healthy friendships and romantic attachments. It was amazing to discover that my life experience, which had felt so abnormal for so many years, was actually quite normal for ­those who, like me, ­were born with an intersex condition. To hear other ­women articulate the same fears and concerns I had was both liberating and reassuring. Ultimately, however, the most impor­tant “take-­home” message I derived from participating in the group was that I saw the other members as both worthwhile and likeable, and that in turn allowed me to see how someone e­ lse might know the truth about my life and not recoil in horror or reject me out of hand. In time I was able to leverage the strength I derived from participating in the group, sharing for the first time the truth about my having been born intersexed with some close friends. For so many years I had lived in fear that someone would discover that I had ais; it was almost unimaginable that I would disclose this information about myself voluntarily. Yet t­here I was

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telling my friends and seeing that they did not reject me but instead ­were supportive and encouraging. An even greater hurdle was the road to a romantic alliance. I had been terrified of allowing anyone to see me naked from the waist down, certain that my absence of pubic hair (this, of course in the days before such a look became fash­ion­able) would itself earmark me as freakish and undesirable. The prob­lem of vaginal hypoplasia weighed heavy on my mind, as I had not pursued any treatment to ameliorate this shortcoming (pun intended). Armed with both information and a new vigor to deal with the situation, I resumed medical care a­ fter having not been to a doctor in more than 15  years. In the pro­cess, I began to take estrogen, and started to use dilators to address my vaginal length prob­lem. Walking into a doctor’s office for the first time since I was 17 was, however, no small ­matter. I literally found myself shaking in the waiting room. For almost the ­whole of my life since adolescence, I dreaded g­ oing to the doctor. I d ­ idn’t much trust doctors, given that they never told me the truth about having ais and having been put on “display” for interns and residents. While I cannot say that my more recent interactions with endocrinologists have always been pleasant, it is a fundamentally dif­fer­ent experience to be a patient who knows the truth and is able to be an informed participant in making decisions about her care, something denied me by ­those doctors who perpetuated the lie about my having “twisted ovaries” and who seemed to have a palpable discomfort in treating me. ­After having started to address my medical concerns, and in conjunction with ongoing therapy to sort out my feelings, I was fi­nally able to consider in earnest for the first time embarking on an intimate, sexual relationship. A few years ago I met my husband, Richard, through a local chapter of Mensa. We initially made contact through a listserv for this local group. Upon joining, I mentioned an enjoyment of classical ­music and opera. This sparked Richard’s interest, and we had a brief on-­line exchange following which he ran a Google search on my name, something he was in the habit of ­doing when he met new friends. Richard got more than he ­bargained for, as the search yielded a variety of articles about my being intersexed, my involvement with the support group, and my efforts to  change how the medical community responds to intersex infants and  adults. As it turned out, however, this was not off-­putting for him, but was a catalyst for us developing a natu­ral openness and intimacy in our relationship.

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To find myself married to someone I love, to have a life that is filled with the richness of close friendships, was unimaginable to me just a few short years ago. ­Those who lied to me about having ais rationalized to themselves that they w ­ ere protecting me, yet their actions fostered an atmosphere of shame and secrecy, which in turn communicated to me that the truth about me was unacceptable. The need to be loved and accepted for who we are is fundamental, yet this is denied to someone who is told lies and who receives the message that she is unacceptable through both actions and words. If my experience speaks to anything, it is the need for the medical community no longer to see being intersexed as a horrible ­mistake of nature to be corrected, to the maximum extent pos­si­ble, through surgical and medical intervention. Instead, my experience informs me that a better outcome is pos­si­ble only if parents of a newborn with ais or other intersex condition are referred for appropriate counseling so that they can work through any guilt or shame they feel about having an intersexed child. Only in conjunction with such counseling can they make informed choices about their child’s care based on what is in the long-­term interest of the child rather than making impulsive decisions designed to erase, often through surgical means but equally through lies, such shame and guilt. At the same time, it is critical that parents be placed in touch with an appropriate support group, not only so that they can listen to the experiences of other adults living with a condition similar to their child’s, but also so that they can gather support from other parents who are faced with the same challenges. In this way, their experience can be normalized, and they, in turn, can go on to become a valuable resource for their ­children, fostering an open and honest dialogue in the pro­cess. Medicine, particularly Western medicine, does an outstanding job of curing illness but still has much to learn about healing. Th ­ ose who are drawn to medicine as a c­ areer are committed to helping their patients and want what is in their patients’ long-­term best interests. The challenge is that physicians are sometimes overly impressed with new technologies and surgical techniques, losing sight of the fact that t­here is meaning and purpose to being born “dif­fer­ent,” and that surgery and secrecy have the potential to invalidate the patient’s experience. If I had a choice, I would not elect to be born without ais. The challenges I have faced have contributed to who I am. Having ais is not for me the tragedy my parents and doctors thought it would be. Secrecy and silence have left far deeper scars than my transitory strug­gle to come to terms with having been born with testes and xy chromosomes. Having met hundreds

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of other ­women with ais, I can say that this has been true for them as well. While ­these experiences are sometimes dismissed as “anecdotal,” I think that the experience of hundreds of individuals, particularly in a relatively small population, should be viewed as instructive if not conclusive. It is encouraging to see the shift in thinking by physicians who are treating the intersexed ­children born ­today. ­There is a better world ahead for ­these ­children, not only as society grows more tolerant, but also ­because they ­will have access to impor­tant support resources that w ­ ere not available when I was born. Medicine can play a key role in achieving a better outcome for ­these individuals—­not with a scalpel but with information, options, and a deeper appreciation of their needs.

Raising a ­Woman Mary Stainton

In my mind’s eye, I see myself caring for a child, a ­daughter, with ce­re­bral palsy. As I bend over to diaper her, I know I stand between two worlds: the world I have known all my life as a ­woman with a disability, and the world of my ­mother. Gleaning from my own experience, I dream of giving my ­daughter physical therapy, but framing its need differently for her than it was framed for me. I want my d ­ aughter to know that the purpose of therapy is to enhance the strengths of her body and to protect it from unnecessary harm or pain. I want to avoid at all cost giving my ­daughter the message that she needs therapy in order to correct something that is wrong with her body, or to make her body look “normal.” And I dream of her adolescence, of how she ­will experience menstruation. I want to be honest with her about the difficulties her ability to give birth w ­ ill bring. Blood flowing between spastic legs is incredibly hard to deal with. But I also want her to know that her ability to give birth, w ­ hether or not she chooses to, is a sacred t­ hing. Indeed, her choice is the most sacred ability of all. Wrapped around all my dreams for this child I care for is the desire for her to know, and know deeply within herself, that this undeniably difficult body is nonetheless good, even beautiful. I glance at my ­mother, who stands in the room with me, as all the desires and frustrations she has ever felt about her three c­ hildren come pouring out of her. I know that despite my dreams, I w ­ ill fail this child. I w ­ ill not be able to give her every­thing I wish. Mortals carry divine hopes in ­human containers. To the task of raising her youn­gest ­daughter, my ­mother brought love, vision, and determination. She also brought assorted demons. Some I can name; some I can only won­der about. Mary Stainton, “Raising a ­Woman,” from Journal of the American Medical Association 296, no. 12 (2006): 1445–1446. Copyright © 2006 by American Medical Association. Reprinted by permission of American Medical Association. All rights reserved.

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“You came into our lives out of the blue,” she told me a few years ago. “We ­didn’t even know if what you had was fatal.” She found the best doctor in the country for the treatment of ce­re­bral palsy. She bought me books ­because “books ­will make the world accessible to you” and sent me to a camp for disabled kids so I would learn to love the outdoors and have a peer group among whom I could compete successfully. She was determined that I not misuse my disability and that I develop a sense of responsibility. “­Don’t let her get away with that ­because she’s in a wheelchair,” she told a ju­nior high teacher I had mouthed off to. When I confessed to biting a childhood friend on the ankle, she made me call the friend up and apologize. Such discipline was unheard of among my disabled friends. “You have a responsibility to make this world a better place for your having been ­here,” she said when I was 13. ­Those words have been a guiding force in my life. Determined not to replicate her own experience of ignorance and terror at her first menstruation, she brought home clear, three-­dimensional models of the male and female reproductive systems, which she had borrowed from Planned Parenthood, and discussed “the facts of life” with me when I was 10. Her explanations w ­ ere far from perfect, and she was obviously tense, but compared to many of the kids with disabilities I knew, I was lucky. One girl, 16, deaf, and with ce­re­bral palsy, swore she had gotten herself pregnant ­because she had danced with a boy. I was much younger, but b ­ ecause of what my ­mother had taught me, I told the girl she was wrong. My ­mother’s teaching was all the more remarkable ­because my ­mother hated being female. My adolescent memories are filled with stories of her own menstruation: smells she had to endure, social embarrassment, coarse rags that chafed between her legs. She railed against w ­ omen’s roles and the sexism that made her feel angry and trapped, but was unable for what­ ever reasons to explore dif­fer­ent options that the feminist movement of the 1960s and early 1970s created and encouraged. And despite her visionary self, Mom was a victim of a dominant culture that fails to provide adequate resources for parents of adolescents with disabilities and that defines ­people with disabilities as less sexual, less deserving, and less alive than other members of society. Her victimization became mine. Nowhere did I feel my ­mother’s anger and sense of entrapment more than when she assisted me during my periods. Frustration ripped through her as she cleaned between my legs and pulled up a Kotex pad. She felt she had to

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be with me constantly, in case I needed to go to the bathroom. I felt guilty for making a mess; for bleeding at all. Around the time I was 12 or 13, we started talking about options. She took me to doctors. I was put on the Pill, then given shots to stop, or at least curtail, my menstrual flow. A normal body pro­cess was now a huge prob­lem we had to control. My ­mother and the doctors knew I could not take medi­cation that affected my hormones forever. So we started talking about surgery, about my having a hysterectomy. The gynecologist explained it very rationally. He would take my uterus, but leave my ovaries. Therefore, I would still be female. He asked me about having ­children, reminding me ­there was no medical reason I c­ ouldn’t have them. “I can always adopt,” I said. He agreed. I was an intelligent teenager who could articulate options. I also knew what ­people wanted to hear, including my ­mother. I had expressed doubts to her. “You ­will never be able to carry a baby or get your legs far enough apart to give birth,” she said. “But what if t­ here is a way?” I asked. “What if somewhere in the f­ uture, someone comes up with a way?” I did not have the strength or the clarity to tell her, “I am 14 years old. You are asking me to make a decision that affects more than 30 years of my life, to make an irrevocable decision about becoming a ­mother more than 30 years before I should have to.” I could not even say simply, “I am not ready to make a permanent decision about ­whether I have ­children.” “You are an easy target for a rapist,” she said. “You ­wouldn’t be able to run from your attacker. What if you got pregnant from him?” “Most able-­bodied ­people I know ­can’t run from their rapist!” I protested. When our cats got spayed, I expressed concern about something similar happening to me. She brought my concerns to the doctor, but nothing dissuaded her. The doctor explained it rationally, again. I wish he would have said, “If Mary has any doubts whatsoever, we are not ­going to do this.” I wish he would have said, “No healthy 14-­year-­old should be forced to make this decision.” I wish he would have asked, “Is ­there a therapist who can teach Mary how to deal with her periods?” and “What ­else is ­going on in this ­family that might be pressuring Mary to have this surgery?” I never heard anyone ask ­those questions, and I never saw a therapist for help.

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Looking for spiritual resources, I asked my then 17-­year-­old fundamentalist Christian ­sister if God wanted me to do this. “If He ­doesn’t, it ­won’t happen,” she said. I mulled over her words as I stared at the full moon outside my win­dow that night. They ­were small comfort. Tensions came to a head one summer morning. I had started my period the night before. Tired and very frustrated, my ­mother was helping me in the bathroom. Suddenly, she snapped. “If you ­don’t have the operation, I ­will commit suicide!” she screamed at me. I believed her, and never said another word in protest. The night before surgery, I lay in my hospital bed feeling frightened, alone, and uncertain. I felt very trapped. The next day, I awoke from surgery screaming, “What the hell have I done to deserve this?” at the top of my lungs. In the de­cades since that day, I have strug­gled with its legacy. The first sense of loss I could articulate was a sense of my identity as female; of my connection to other w ­ omen, of being “normal,” of being something besides my disability. One of the most basic t­ hings ­women talk about with each other is menstruation. Especially in adolescence, it is one of the primary realities in our experience of being female. Take menstruation away from a teenager, and you make it harder for her to experience herself as a ­woman, even if she has ovaries. I also ended up with a tremendous sense of guilt and anger about other normal body pro­cesses that having ce­re­bral palsy makes difficult to deal with. My hysterectomy reinforced the message that my body is a major incon­ve­nience; a prob­lem that is in no way “good.” Fortunately, life blesses many of us with more “parents” than ­those we ­were born to. In and beyond college, I have found ­people who listened to my story, and affirmed my very feminine self. And somehow in the universe, I have been graced with a transcendent One who is larger and more loving than any person I know. The moon I saw outside my win­dow is now part of me. She tells me to love my body ­every day. And fortunately, parents change. Freed from the pressures of raising ­children, my ­mother sat and listened a few years ago as I told her how I felt about the hysterectomy. “It was a difficult time,” she said slowly. “I’m sorry. I would not do that to you now.” She was not the same ­woman she was all ­those long years ago.

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And I am not the same person. I am now the age my m ­ other was when she began to teach me about my body. Now, I am a ­mother—to myself. In my mind’s eye, I see myself raising a ­woman, a ­daughter, with ce­re­bral palsy. I give her physical therapy to enhance her body’s strengths; to protect her body from harm ­because I know it is good. I remind her that though she has no uterus, she gives birth all the time. I tell her that ability is a sacred gift. Sometimes, I wrap my arms around her and raise her high for the world to see. She is strong, she is holy. She is wounded, she is wise. She is beautiful, and she is me.

The Sick Wife Jane Kenyon

The sick wife stayed in the car while he bought a few groceries. Not yet fifty, she had learned what it’s like not to be able to button a button. It was the ­middle of the day— and so only ­mothers with small ­children or retired ­couples stepped through the muddy parking lot. Dry cleaning swung and gleamed on hangers in the cars of the prosperous. How easily they moved— with such freedom, even the old and relatively infirm. The win­dows began to steam up. The cars on ­either side of her pulled away so briskly that it made her sick at heart.

Jane Kenyon, “The Sick Wife,” from Collected Poems, by Jane Kenyon. Copyright © 2005 by the Estate of Jane Kenyon. Reprinted with the permission of The Permissions Com­pany, Inc., on behalf of Graywolf Press, Minneapolis, Minnesota, www​.­graywolfpress​.­org.

The Loneliness of the Long-­Term Care Giver Carol Levine

I am standing at a bank of phones, desperately punching in codes and numbers. Each time, the line goes dead. “Why ­can’t I get through to anyone?” I think. “I must be ­doing something wrong.” I wake up. This time it’s only a dream. But the dream originated in a real experience. On the icy morning of January 15, 1990, my husband lay comatose in the emergency room of a community hospital a­ fter an automobile accident. Uninjured but dazed, I stood at a bank of hospital phones trying to reach ­people who could help me transfer him to a major medical center. I was unaware that, by a malevolent coincidence, most of the phones in the region w ­ ere not working. The dream recurs, and it has now taken on a new meaning. In the nine years since the accident, and especially in the eight years I have strug­gled to take care of my husband at home, I have frequently despaired: “Why ­can’t I get through to anyone?” Only in the past few years have I realized that I am not ­doing anything wrong. It is the health care system that is out of order. Since I have spent 20 years as a professional in the fields of medical ethics and health policy, it is hardly surprising that I should reach such a conclusion. A recent series of articles in the Journal made clear the increasing fragmentation and inequities in the current market-­driven health care economy.1 But my personal experience as a ­family care giver has given me a dif­ fer­ent perspective. I see the health care system through everyday encounters with physicians, nurses, social workers, receptionists, vendors, ambulette ­drivers and dispatchers, administrators, home health aides, representatives of my managed-­care com­pany, and a host of other “providers.” The attitudes, Carol Levine, “The Loneliness of the Long-­Term Care Giver,” from New ­England Journal of Medicine 340 (1999): 1587–1590. Copyright © 1999 by Mas­sa­chu­setts Medical Society. Reprinted by permission of Mas­sa­chu­setts Medical Society.

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be­hav­ior, and decisions of specific individuals make the system work or fail for me. ­There are of course critical links between the be­hav­ior of individual persons and the system’s structural and financial incentives and rewards. Health policy makers and analysts rarely consider the impact of ­these incentives on the 25 million unpaid, “informal” care givers in the United States, who get ­little from the system in return for the estimated $196 billion a year in l­abor they provide.2 ­Family care givers are largely invisible, as individuals and as a ­labor force. When my journey began, no one told me what to expect. ­There is no pro­ cess of informed consent for f­ amily care givers. On that unforgettable January day, I knew that I must ask, “Is my husband brain-­dead?” And I knew what to do if the answer was yes. “No,” said the neurosurgeon at the community hospital, “but he has suffered a severe brain-­stem injury. At his age [then 62] it is unlikely that he ­will survive.” The neurosurgeon at the medical center disagreed. “He ­will walk out of ­here 100 ­percent, but it ­will take some time.” “How long?” I asked. “Weeks,” he replied, “maybe months.” My husband did survive, a testament to one of American medicine’s major successes—­saving the lives of trauma patients. But he ­will never walk, and he is far from 100 ­percent. While he was in a coma, I read to him, played his favorite ­music, and showed him f­amily pictures. ­After four months he gradually emerged from the coma, his thinking chaotic. A ­ fter many more months of relearning basic words and concepts, he recovered many cognitive functions, and ­there ­were occasional flashes of his old intelligence and humor. But he is not the same person in any sense. Although I worried most about his ­mental functioning, it is his body that has recovered least. He is totally disabled and requires 24-­hour care. He is incontinent of bladder and bowel. He is quadriparetic, with mobility limited to the partial use of his left hand. (His right forearm was amputated as a result of an iatrogenic blood clot that failed to respond to surgery and drug treatment.) Even so, the most difficult aspect of his care is his changed personality and extreme emotional lability. Antipsychotic drugs now generally control his violent outbursts, but t­ here are still unpredictable rages and periods of withdrawal. As a rehabilitation inpatient he had physical therapy, occupational therapy, speech therapy, cognitive therapy, psychological counseling, nerve blocks, injections of botulinum toxin, hydrotherapy, recreational therapy, and therapeutic touch. He benefited to some degree, but nothing restored true function. He has under­gone numerous operations, including placement of a shunt ­after

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a blood clot formed in his leg, tendon releases in both legs, removal of a kidney stone, and most recently, removal of a pituitary tumor. He has under­ gone oral surgery and extensive dental work. During my nine-­year odyssey, I stopped being a wife and became a f­ amily care giver. In the anxious weeks when my husband was in the intensive care unit, I was still a wife. Doctors and nurses informed me of each day’s pro­ gress or setbacks and treated me with kindness and concern. At some point, however, when he was no longer in immediate danger of ­dying, and as the specialists and superspecialists drifted out of the picture, I became invisible. Then, when the devastating and permanent extent of his disabilities became clear to clinicians, I became vis­i­ble again. At that point, I was impor­tant only as the man­ag­er and, it was expected, the hands-on provider of my husband’s care. In retrospect, I date my rite of passage into the role of ­family care giver to the first day of my husband’s stay in a rehabilitation fa­cil­i­ty, a place I now think of as a boot camp for care givers. A nurse stuck my husband’s soiled sweat pants u ­ nder my nose and said, “Take ­these away. Laundry is your job.” A w ­ oman whose husband had been at the same fa­cil­i­ty ­later told me the same story—­dif­fer­ent nurse. The nurse’s under­lying message, reinforced by many o ­ thers, was that my life from now on would consist of performing an unrelieved series of nasty chores. The social worker assigned to my husband’s case had one goal: discharge. I was labeled a “selfish wife,” since I refused to take him home without home care. “Get real,” the social worker said. “Nobody ­will pay for home care. You have to quit your job and ‘spend down’ to get on Medicaid.” Eventually I got the home care I needed—­temporarily. Despite a written agreement to pay for it, the insurance com­pany ­later cut off the benefit retroactively, without informing me, leaving me with an $8,000 bill from a home care agency. The agency, which had failed to monitor its own billing, sued me. We settled for less. When I brought my husband home, he had undiagnosed severe sleep apnea (which caused nighttime screaming), undiagnosed hearing loss, and poorly treated major depression. The first few months at home ­were nightmarish. Since the prob­lems had not been diagnosed correctly, much less treated, I did not know where to turn. Yet a single home visit by a psychiatrist and a specially trained home care nurse, arranged by a sympathetic colleague who treats patients with cancer, gave me enough information, advice, and referrals to begin to master the situation. In addition to holding a full-­time job, I manage all my husband’s care and daily activities. Being a care man­ag­er requires grit and per­sis­tence. It

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took me 10 days of increasingly insistent phone calls to get my managed-­ care com­pany to replace my husband’s dangerously unstable hospital bed. When the new bed fi­nally arrived—­without notice, in the eve­ning, when ­there was no aide available to move him—it turned out to be the cheapest model, unsuitable for a patient in my husband’s condition. In t­ hese all-­too-­ frequent situations, I feel that I am challenging Goliath with a tiny pebble. More often than not, Goliath just puts me on hold. Being a care man­ag­er also takes money. I now pay for a daytime home care aide and serve as the night nurse myself. My husband’s initial hospitalization and rehabilitation w ­ ere paid for by his employer-­based indemnity insurance plan. He is now covered by my employer-­based managed-­care com­pany, which pays for hospital and doctors’ bills and, with a $10 copayment, for prescription medicines. Home care aides, disposable supplies, and most forms of therapy are not covered, ­because they are “not medically necessary.” My husband recently needed a new customized wheelchair, which cost $3,700; the managed-­care com­pany paid $500. Medicare, his secondary payer, has so far rejected all claims. No one advocates on my husband’s behalf except me; no one advocates on my behalf, not even me. I feel abandoned by a health care system that commits resources and rewards to rescuing the injured and ill but then consigns such patients and their families to the black hole of chronic “custodial” care. I accept responsibility for my husband’s care. Love and devotion are the most power­ful motives, but t­here are ­legal and financial obligations as well. My income would be counted t­ oward his eligibility for Medicaid, should we ever come to that. The broader issue of a f­ amily’s moral responsibility to provide or pay for care is much more complex.3 Why should families be responsible for providing such demanding, intensive care? Should this be a social responsibility? American society places a high value on personal and f­ amily responsibility. The thin veneer of consensus that supported some sense of communal responsibility in the past is cracking. This is not a uniquely American prob­lem, however. Even with national health insurance, Australian, Canadian, and British care givers report similar prob­lems of isolation and unmet financial and other needs.4 Only the Scandinavian countries assume that the community as a w ­ hole is primarily responsible for long-­term care. Even so, the Swedish Social Ser­vices Act specifies some spousal responsibility.5 Widely held concepts of f­amily responsibility derive from religious teachings, cultural traditions, community expectations, emotional bonds, or gratitude for past acts. Care givers rarely sort out their mixed feelings. From

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a policy perspective, ­there are historical antecedents and financial realities that encourage looking first to families for care. Perhaps the most impor­tant justification is that most families, or some members, want this responsibility. Many derive spiritual or psychological rewards from care giving. Taking care of each other comes with being a f­amily. This is an especially strong value among recent immigrants or tightly knit ethnic communities who distrust the formal system but who often have too few resources to cope on their own. The prob­lem is not that public policy looks first to families but that it generally looks only to families and fails to support ­those who accept responsibility. The availability of f­amily care givers does not absolve policy makers of their own responsibility to make sure that their actions assist rather than destroy families. F ­ amily members should not be held to a level of moral or ­legal responsibility that entails jeopardizing their own health or well-­being. Given the complexity of the health care system, what changes would make a difference for f­ amily care givers? The automatic answer tends to be: What­ever they are, we c­ an’t afford them. Or, what­ever we can afford is not worth ­doing. Many ­family care givers have serious financial prob­lems. Nevertheless, a single-­minded focus on money, based on an unsubstantiated assumption that most care givers want to be replaced by paid help, diverts attention from other critical needs. The reaction to the Clinton administration’s January proposal for assistance for the el­derly and ­family care givers is an instructive example of the differing worldviews of health policy analysts and ­family care givers. Most professionals focused on the proposed tax credit of $1,000 and found it wanting. The credit would not apply to ­people who pay no taxes, nor would it make a dent in the heavy costs of full-­time paid care. The proposal does not do anything to create a coherent long-­term care policy.6 All ­these observations are true. On the other hand, ­family care givers and organ­izations that represent their interests have been largely positive about the proposal. The tax credit is a tangible benefit that ­will help many middle-­class families. Equally impor­tant, the proposal puts f­ amily care giving on the national agenda and gives states money and incentives to develop resource centers. ­These points are also all true.7 In my professional role, I know that much more is needed, including a restructuring of Medicare to better meet the long-­term needs of the el­derly and disabled and the creation of a more flexible range of options for home and community-­based care.8 I also know that change w ­ ill take a long time and ­will be determined by the interests of the major players and by po­liti­cal

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considerations. As a ­family care giver, I ­will take what­ever help I can get when I need it, and that is right now. Clinicians as well as policy makers have responsibilities t­oward ­family care givers. Care givers say they want better communication with professionals, education and training, emotional support, and advocacy to obtain needed ser­vices for their relatives and themselves. They want help in negotiating the impenetrable thicket of financing mechanisms, the frequent denials of ser­vices or reimbursements, and the inconsistent interpretations of policies and eligibility. They want respite, too, but through ser­vices that they can tailor to their needs. Th ­ ese are modest requests—­too modest, perhaps—­ but unfulfilled nonetheless. Care givers in the focus groups convened by the United Hospital Fund’s Families and Health Care Proj­ect reported a lack of basic information about the patient’s diagnosis, prognosis, and treatment plan, the side effects of the patient’s medi­cation, the symptoms to watch for at home, and whom to call when prob­lems occur.9 Sometimes care givers reported that they ­were given conflicting information. Managed care did not create this prob­lem, but it seems to have exacerbated it. Often, professionals convey information in such a hurried, technical way that anxious care givers cannot absorb it. Hospital staff members may assume, erroneously, that a home care agency ­will instruct the care giver. Th ­ ere are costs to t­ hese lapses. Failures in communication can lead to serious prob­lems with the care of patients, including unnecessary hospital readmissions. Some families, however, become experts on the conditions of their relatives and the specifics of their care. Yet professionals frequently ignore this expertise, ­because it comes from laypersons. ­Family care givers also want to be involved in decision making that affects the patient and themselves. Elsewhere, Connie Zuckerman and I have described some of the reasons clinicians have difficulties with f­amily members, especially with re­spect to decisions about acute care.10 In my husband’s case, I alone made the only impor­tant decision, which was to transfer my husband to a medical center on the day of the accident. A ­ fter that ­there ­were never any clear-­cut decisions, no discussions about the goals of care, and certainly no long-­term planning. Although I repeatedly asked to attend a team meeting to discuss his prognosis and care, I was never given that opportunity. Nor was t­here ever any follow-up at home, a common complaint among care givers. Care givers want education and training that recognizes their emotional attachment to the patient. Professionals seldom appreciate how much fear

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and anxiety complicate the learning of new tasks. Learning how to operate a feeding tube or change a dressing or inject a medi­cation is hard enough for a layperson; care givers learn how to perform t­hese procedures for the first time on a person they love. Fearful of making a m ­ istake or simply upset by the idea of having to perform unaccustomed and unpleasant tasks, care givers may resist or fail, or persist at ­great emotional cost. Months before my husband was ready to go home, a nurse insisted that I learn how to put on my husband’s condom catheter. “I ­don’t need to know this yet,” I protested, “and besides, maybe he w ­ on’t need it ­later.” Ignoring our emotional state at the time, she forced me to do it (badly) u ­ ntil both my husband and I burst into tears. L ­ ater, when I complained to her supervisor, I was told, “We just wanted to break through your denial.” Families need emotional support. They frequently bring a patient home to a living space transformed by medical equipment and a f­amily life constrained by illness. Privacy is a luxury. E ­ very day must be planned to the minute. The intricate web of carefully or­ga­nized care can unravel with one phone call from an aide who is ill, an ambulette ser­vice that does not show up, a doctor’s office that cannot accommodate a wheelchair, an equipment com­pany that does not have an emergency ser­vice. ­There are generally no extra hands to help out in a crisis and no experienced colleagues to ask for advice. Friends and even ­family members fade away. Programs that train and support ­family care givers can be based in hospitals, community agencies, schools and colleges, home care agencies, managed-­ care companies, or other settings. The United Hospital Fund’s ­Family Caregiving Grant Initiative is funding several such proj­ects. If ­family care givers need education, professionals need it just as much. Education for doctors, nurses, and social workers should include understanding the needs of ­family care givers. Ideally, all professionals should have the experience of seeing firsthand what is r­ eally involved in home care. In-­service programs can educate health care professionals about f­amily dynamics as well as build communication and negotiating skills. ­Family care givers must be supported, ­because the health care system cannot exist without them. And t­here is another compelling reason: care givers are at risk for ­mental and physical health prob­lems themselves. Exhausted care givers may become care recipients, leading to a further, often preventable, drain on resources. Does my managed-­care com­pany realize, for instance, that during the past year it paid more for my stress-­related medical prob­lems than for my husband’s medical care?

notes 1 Angell M. The American health care system revisited—­a new series. N Engl J Med 1999;340:48. 2 Arno PS, Levine C, Memmott MM. The economic value of informal caregiving. Health Aff (Millwood) 1999;18(2):182–188. 3 Levine C. Home sweet hospital: the nature and limits of private responsibilities for home health care. In: AW Galston and EG Shurr, eds. New Directions in Bioethics. Boston: Kluwer; 2001:169–191. 4 Schofield H, Booth S, Hermann H, Murphy B, Nankervis J, Singh B. ­Family Caregivers: Disability, Illness and Aging. St. Leonards, Australia: Allen & Unwin; 1998. 5 Barusch AS. Programming for f­amily care of el­derly dependents: mandates, incentives, and ser­vice rationing. Soc Work 1995;40:315–322. 6 Graham J. Halfway mea­sures. Chicago Tribune. January 17, 1999. 7 Statement by Suzanne Mintz, President, National ­Family Caregivers Association, Ken­sington, MD, January 6, 1999. 8 Cassel CK, Besdine RW, Siegel LC. Restructuring Medicare for the next ­century: what ­will beneficiaries ­really need? Health Aff (Millwood) 1999;18(1):118–131. 9 Levine C. Rough Crossings: ­Family Caregivers’ Odysseys through the Health Care System. New York: United Hospital Fund, 1998. 10 Levine C, Zuckerman C. The trou­ble with families: ­toward an ethic of accommodation. Ann Intern Med 1999;130:148–152.

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No single intervention ­will change the system, but small steps taken together can cover a long distance. As I enter my 10th year as a ­family care giver, it is hard to believe I have come this far. T ­ oday is a reasonably good day. But what about tomorrow? And next week? Hello? Is anyone listening?

­Fathers and Sons David Mason

Some ­things, they say, one should not write about. I tried to help my ­father comprehend the toilet, how one needs to undo one’s ­belt, to slide one’s trousers down and sit, but he stubbornly stood and would not bend his knees. I tried again to bend him ­toward the seat, and then I laughed at the absurdity. ­Fathers and sons. How he had wiped my bottom half a ­century ago, and how I would repay the ­favor if he would only sit. ­Don’t you— he gripped me, trembling, searching for my eyes. ­Don’t you—­but the word was lost to him. Somewhere a man of dignity would not be laughed at. He could not see it was the crazy dance that made me laugh, trying to make him sit when he wanted to stand. David Mason, “­Fathers and Sons,” from New Yorker, September 28, 2009. Copyright © 2009 by David Mason. Reprinted by permission of the author.

Parents Support Group Dick Allen

Our ­children half-­lost, we gather at the ­table, Making small polite jokes About weather and coffee. The blinds are drawn. Outside, the summer after­noon is tennis strokes, A grackle calling to its mate, wind-­chimes Sliding tailgates of delivery vans. Long-­timers smile And pat the new arrivals’ backs. Our therapist Takes a long, long, long, long, long while Before he starts, reluctantly. That hot potato, Pain, Goes round and round the t­ able. Who of us Are blameless, who share blame For why our ­children left a crust Of blood across their wrists, gulped pills, or think Their terribly thin bodies still are fat, Did drugs, did drink ­Behind ripped billboards of their raw self-­hate? We ­don’t know. Weeks . . . ​or was it days ago, Self-­tucked in the illusion we control Our lives . . . ​sane, in our accepting this . . . ​we thought That all stones roll

Dick Allen, “Parents Support Group,” from Ode to the Cold War: Poems New and Selected, by Dick Allen. Copyright © 1997 by Dick Allen. Reprinted by permission of The Permissions Com­pany, Inc., on behalf of Sarabande Books, Inc., www​.­sarabandebooks.org.

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“Doctors ­Don’t Know Anything” The Clinical Gaze in Mi­grant Health Seth M. Holmes

Structural ­Factors Affecting Mi­grant Health Clinicians

Biomedical professionals in the field of mi­grant health work ­under demanding and difficult circumstances. Most clinics serving mi­grant farmworkers are nonprofits with unreliable and changing sources of funding, and many lack certain expensive medicines and medical instruments. Physicians and nurses in ­these clinics perform many extra duties, from requesting f­ree medicines for their patients to filling out paperwork for discounted perinatal care for ex­pec­tant ­mothers. ­These clinicians often feel hopeless as they witness the systematic deterioration of young, healthy ­people who come to the United States to work on farms. Dr. Samuelson, the physician and mountaineer in the mi­grant clinic in the Skagit Valley, spoke about the frustration of seeing his patients’ bodies deteriorate over time. I see an awful lot of p ­ eople just wearing out. They have been used and abused and worked physically harder than anybody should be expected to work for that number of years. Then they come out with this nagging back pain. You work it up, and it’s not getting better, and you d ­ on’t think ­there is any malingering ­going on. It gets to the point where you just have to give them an mri scan, and their back is toast. In their early forties they have the arthritis of a seventy-­year-­old, and ­they’re not getting better. . . . ​­They’re told, “Sorry, go back to ­doing what ­you’re ­doing,” and ­they’re stuck. ­They’re screwed, in a word, and it’s tragic. Excerpted from Seth  M. Holmes, “Doctors D ­ on’t Know Anything,” from Fresh Fruit, Broken Bodies, Mi­grant Farmworkers in the United States, by Seth Holmes, 128–144, 152–155 (Berkeley: University of California Press, 2013). © 2013 by The Regents of the University of California. Reprinted by permission of University of California Press.

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Several clinicians also pointed out the difficulties caused by racism in the clinic waiting room. Physicians and nurses spoke of white patients telling them such t­ hings as “I c­ an’t come at that time b ­ ecause I d ­ on’t want to be in the waiting room with ­those ­people,” meaning Mexican mi­grant workers. Some white patients complained about the smell of the farmworkers ­after picking, and some complained that the farmworkers always brought their ­children with them. Only approximately 5 ­percent of undocumented mi­grants nationwide have health insurance, and most do not qualify for Medicaid or Medicare due to their immigration status.1 This means not only that many clinics are reimbursed for few of the ser­vices they provide but also that ­there are many obstacles to providing high-­quality care. The low level of reimbursements means that such clinics must repeatedly apply for grants from vari­ous public and private sources in order to stay afloat. Given the uneven levels of funding, clinic administrators must cut impor­tant programs from time to time when funding is low or when the priorities of funders change. To compensate for the shortfalls, the physicians and nurses spend a lot of time and energy trying to obtain samples or donations of medicines needed by their patients. Dr. Goldenson, the South American physician in the mi­grant clinic in California, told me about a patient of his who got valley fever (coccidiomycosis) from working the fields of the Central Valley. This potentially fatal lung infection is caused by breathing in soil and is therefore a significant concern among farmworkers. Dr. Goldenson had two mi­grant farmworker patients with valley fever over the previous three years. Both ­will require suppression therapy with an expensive antifungal antibiotic for the rest of their lives. Dr. Goldenson described one patient’s pro­gress. He’s not d ­ oing as well. . . . ​But at least he’s surviving. Basically, he’s g­ oing to need $1,000 a month of Diflucan for life. Of course this guy cannot afford even $100 a month. So far, we ­were able to get MediCal to cover it, although ­every month I have to go through reapprovals. . . . ​Quite often I have spent more time trying to get samples. I’m calling friends or looking for special programs. It’s a lot of work, but you feel good about it, b ­ ecause ­these are ­people who ­really appreciate that. The need to make enough money to survive and the lack of flexibility in farmwork schedules make it difficult for mi­grant farmworkers to take time off to go to the clinic during the day. This encourages the workers to wait ­until they are very sick before ­going to the clinic and forces them to miss appointments on days when picking goes l­ater than expected. Clinicians

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told me on several occasions how difficult it was to treat mi­grant workers effectively given that they do not make use of preventive ser­vices and often miss appointments. Continuity of care is also very difficult to ensure ­because most mi­grant workers move to dif­fer­ent towns ­every few months. This means that a new source of discounted or f­ ree medicines must be found by the clinicians in each new town. Dr. McCaffree, a 30-­something female physician in the Skagit mi­grant clinic who grew up in a missionary f­ amily in South Amer­i­ca, told me, “Most [mi­grants] ­don’t have any insurance, so that’s even harder, ’cause you start them on a medi­cation and you know ­they’re just ­going to be off it again wherever they go next.” The migratory nature of farmworkers’ lives also means that their medical rec­ords are extremely patchy. Each clinic has at least one medical rec­ord for each patient that covers only the seasons during which she or he lived in that area. Many clinics have more than one rec­ord for each patient due to confusion over w ­ hether the rec­ord should be alphabetized by maternal last name, paternal last name, or spouse’s last name as well as direct mistranscription of names in Spanish. In addition, some undocumented patients give nicknames or false names for fear of their information being turned over to the Border Patrol. Language differences complicate the field of mi­grant health on several levels. Most clinicians are bilingual in En­glish and Spanish; however, some, like the locums doctor in the Skagit Valley, need a translator when they see Spanish-­speaking patients. Often clinicians with poor Spanish-­ language skills do not have time to get a translator and instead conduct the appointment in En­glish, which the patient cannot understand, or with an untrained interpreter—­for example, the child I observed translate during her ­mother’s gynecological exam. One Triqui patient I know gave premature birth to a baby girl. The nurses wrote, “Patient refuses breast pump,” though they did not have a translator with them when they had the interaction that brought them to this conclusion. The hospital social worker who pointed this out to me said, “I can only imagine what she thought they ­were saying as they gestured ­toward her breasts with the electric machine.” The nurse practitioner/midwife in the Skagit Valley told me about the ways in which language differences and lack of time and personnel lead to poor care: “­There are a lot of staff who d ­ on’t want to be bothered getting a trained interpreter. ­People grab me and say, ‘Oh, could you be an interpreter?’ This person has a right to get a real interpreter and not a five-­minute discussion with me when I am r­ unning from patient to patient. It’s just reluctance. It’s just that one more step. It’s racism. It’s being overworked b ­ ecause our system is a total train wreck right now.” “Are you sure you want to be a doctor?” she asked.

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Very few mi­grant clinics offer ser­vices in languages other than Spanish or En­glish. The hospital in the Skagit Valley, where my Triqui friends went when they needed inpatient ser­vices, offers Mixtec translation through a local nonprofit language ser­vice. However, a Mixtec translator is often called when hospital staff find out a patient is from Oaxaca, even if the patient speaks only Triqui. In addition, several clinicians indicated that it is especially hard to communicate with Oaxacan w ­ omen. Fewer Triqui w ­ omen have attended school in San Miguel than Triqui men, and as a result some do not speak Spanish. In addition, clinicians complain that Oaxacan ­women speak quietly and do not look them in the eyes. Sometimes, assumptions about language and lack of interpretation have even more dire consequences. One Triqui man, Adolfo Ruiz-­Alvarez, was held in an Oregon state ­mental hospital and medicated for over two years ­after being interviewed only in Spanish and then charged with trespassing and public indecency.2 According to my Triqui companions, ­b ecause Mr.  Ruiz-­Alvarez could not communicate in Spanish, which it was assumed was his native language, he was thought to be crazy. When I heard about this case, I remembered that several times while homeless in California during my fieldwork I could have been charged with public indecency for relieving myself in a public park a­ fter the toilets w ­ ere locked at sundown. My Triqui companions also described the case of a Mixtec man, Santiago Ventura Morales, who was charged with murder without Mixtec translation. Mr. Ventura Morales was held in an Oregon state prison for four years before a nonprofit agency advocating for indigenous Mexicans provided interpretive ser­vices that led to his case being overturned.3 Clinicians in the field of mi­grant health work in difficult environments that require extra time and work procuring medicines, dealing with the racism of their patients, and working in several languages, all the while lacking reliable resources. Despite feeling overworked, powerless, and sometimes hopeless, they also feel a commitment to work with this population. Many described Latin American mi­grant farmworkers as deserving high-­quality care, and most described feeling a calling, a vocation, to provide quality health care to this population. As Dr.  Goldenson put it, “It’s a very difficult prob­lem. We have a bad insurance crisis and health care crisis. I mean, citizens cannot ­really afford health care. And the mi­grant workers, I truly believe they should have at least the same access as the ­others. I mean, this work that they are d ­ oing is something that nobody e­ lse is willing to do.

That’s the truth. That’s prob­ably the only reason why we are able to go to the supermarket and buy fruit for a fair price. So this is a group of ­people that ­really deserves our attention.”

Mi­grant Health Care

Crescencio had described his headaches to me earlier, a­ fter the health fair in our ­labor camp. He said he developed ­these excruciating headaches ­after being called racist names and treated unfairly on the job and explained that he wanted treatment before he might become agitated or violent with his ­family. He explained that he had seen several physicians in the United States and Mexico as well as a traditional Triqui healer, but none of their therapies had been effective over the long term. He asked me if I had any medicines I could give him. Not knowing what e­ lse to do, I suggested Crescencio go to the local mi­grant clinic to see if they could try something new for his prob­ lem. I remembered the algorithm for headache diagnosis and treatment that I had learned in medical school and wondered if the doctors in the mi­grant clinic might use something similar, moving through t­rials of medi­cations for tension, cluster, and migraine headaches. A week ­later, Crescencio told me that he had seen one of the doctors in the clinic but that she ­didn’t give him any medicines. He said that she had referred him for therapy and asked me what that meant. I described paying someone to sit with you, ask you questions, and listen to your answers in order to help you work through your feelings and thoughts and help you decrease your unhealthy use of substances. At the same time, I knew he barely had money to go to the clinic the first time, and it was unlikely he would spend $15 a session for psychotherapy or substance abuse therapy (though that would seem a bargain to ­others). ­After several weeks of trying to make an appointment with the doctor who saw him at the mi­grant clinic, I was able to ask her about Crescencio’s headache. She thought for a minute and then looked at Crescencio’s chart to refresh her memory. She told me that she met with him once briefly over a month ago. She had asked him to cut back on his drinking and then return to see her for further evaluation. However, he ended up returning at a dif­fer­ent time and seeing a dif­fer­ent doctor, the locums physician who spoke only En­glish. ­After looking at her chart note and the notes from

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the locums physician, she told me about Crescencio’s situation from her perspective. Well, yes, he thinks that he is the victim and thinks that the alcohol or the headache makes him beat his wife . . . ​but ­really he is the perpetrator and every­one ­else is the victim. And ­until he owns his prob­lem, he ­can’t ­really change. I’m on the cps [Child Protective Ser­vices] subcommittee, and so I’ve learned a lot about domestic vio­lence. What ­we’ve seen is that nothing ­really works, none of ­these migraine medicines or anything, but to put ­people in jail b ­ ecause then they see a show of force. That’s the only t­ hing that works ­because then they have to own the prob­lem as theirs and they start to change. It’s a complex psychosocial prob­lem, a patterned be­hav­ ior. Prob­ably his dad treated him this way, beat him, and was alcoholic, and now that’s what he does. It’s a classic case of domestic abuse. He came to see me once, and I told him to come back two weeks ­later ­after not drinking. But he ­didn’t come back two weeks ­later. Instead, he came back a month ­later and saw one of our locums. Apparently, he told the doc something about when ­people at work tell him what to do, it makes him mad, and that’s what gives him a headache. Obviously he has issues. He needs to learn how to deal with authority. We referred him to therapy. Do you know if he’s ­going to therapy? As with other health care experiences I observed, this doctor was pressed for time and made assumptions without fully exploring the patient’s psychosocial realities. In Crescencio’s case, the physician made the assumption that his description of feeling agitated and angry indicated that he had already beaten his wife and continued to beat her. Without enough time to pay full attention to the patient’s concerns and focus on the headache and its source, she focused primarily on assumed intimate partner vio­lence. While paying attention to the possibility of such vio­lence is of utmost importance, this focus may have led to a short-­circuiting of the treatment possibilities for Crescencio. Without being able to explore all the pos­si­ble therapies for severe headeaches, the physician retrospectively advocated incarcerating ­people like Crescencio. ­After reading in the chart that Crescencio’s headaches w ­ ere due to mistreatment from supervisors on the farm, the physicians recommended therapy to help him overcome his “issues” with authority and treat his substance use. Without the lenses to see that Crescencio’s suffering was determined by multiple levels of social in­equality and disrespect, they inadvertently blamed

The Gaze of Mi­grant Health Clinicians: Washington and California

The importance of perception in social interactions cannot be overstated. Social scientists have shown the significance of social perception in such diverse contexts as the effects of repre­sen­ta­tions of “the poor” in international development,4 the results of symbolic linkages between gender hierarchies and h ­ uman cells in medical science,5 and the consequences of class-­ related meanings of smell.6 The French sociologist Pierre Bourdieu states

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the headache on the patient’s psychological makeup. In the end, their primary interventions w ­ ere twofold. First, they told him to stop drinking cold turkey, even though drinking was the only effective intervention he had found ­after years of active searching. Unfortunately, though perhaps expectedly, he was not able to stop drinking. Second, the physicians referred him to therapy, without the patient understanding what this meant. Therapy performed in order to help a patient accept poor treatment from supervisors may be helpful to the patient in developing coping mechanisms in the midst of a difficult situation. Substance abuse therapy may help a patient reduce the harm of substance use and develop healthier be­hav­iors. At the same time, therapy may also promote the patient’s ac­cep­tance of his place in a l­abor hierarchy that may include the disrespect and racist insults that Crescencio experienced. In this way, the mi­grant clinic’s interventions ­were not only in­effec­tive but also inadvertently complicit with the social determinants of suffering, serving to reinforce the social structures producing Crescencio’s ­labor position and headache in the first place. Crescencio’s headache is a result most distally of the international economic inequalities forcing him to migrate and become a farmworker in the first place and more proximally of the racialized mistreatment he endures in the farm’s ethnicity and citizenship hierarchy. Th ­ ese socially produced headaches lead Crescencio to become agitated and angry with his ­family and to drink, thus embodying the ste­reo­type of Mexican mi­grants as alcoholic and potentially violent. The racialized mistreatment that produces his headaches is then justified through the embodied ste­reo­types that w ­ ere produced in part by that mistreatment in the first place. Fi­nally, due to power­ful economic structures affecting the mi­grant clinic as well as limited lenses of perception in biomedicine, this justifying symbolic vio­lence is subtly reinforced throughout Crescencio’s health care experiences.

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that “being is being perceived.”7 In other words, h ­ uman beings are defined through perception by ­others. This perception or identification8 determines the actions of other ­people ­toward an individual. ­These actions, in turn, shape the actions of this individual herself insofar as she acts in response to ­others and insofar as her potential actions w ­ ere produced or constrained by the actions of ­others. In addition, ­these perceptions and actions affect the material conditions in which this individual lives insofar as ­those conditions are continually produced by social actions on larger political-­economic and smaller intimate scales. The experiences of suffering and sickness of Triqui mi­grant farmworkers are s­ haped significantly by responses from medical professionals in the field of mi­grant health. Understanding ­these medical responses to Triqui suffering requires an analy­sis of the lenses through which ­these health professionals perceive the suffering of their Triqui patients. As the ethnographic data indicate, ­these perceptions range from positive to neutral, negative to outright racist. Several medical professionals working in mi­grant clinics said that mi­grant farmworkers are a group deserving assistance and are enjoyable to work with. The medical director of the mi­grant clinic in the Skagit Valley told me that the mi­grant workers who cross into the United States are “the stars” of Mexico. The midwife in the same clinic told me that they are “the best and the bravest” of Mexico b ­ ecause they have successfully crossed the border and found work in the United States. Dr. McCaffree told me she was continually “amazed by how they keep g­ oing” and how they “seem happy and content despite their difficult lots in life.” Several clinicians told me that Mexican farmworkers complain less than white patients about their sicknesses and use fewer public resources such as clinic ser­vices, welfare, and workers’ compensation. Multiple times, physicians and nurses told me that the mi­grant farmworkers ­were more respectful and their ­children better behaved than the white patients in their clinic and that the indigenous Oaxacan ­people ­were especially respectful. However, clinicians also had complaints about their farmworker patients. One of the nurses in the Skagit Valley told me, “They ­don’t ­really take care of themselves,” explaining that they needed to be educated about how “to take care of their bodies.” Dr. Goldenson complained to me that Mexican mi­grants “­don’t think they need medicines.” As an example, he said they often misunderstand the results of untreated diabetes and come to the conclusion that diabetes treatments, like insulin, cause the disease’s sequelae, like blindness and nerve prob­lems. Several physicians also complained about the

One of the most in­ter­est­ing aspects of working with a Spanish-­speaking patient is just this real disinclination to want to be specific and quantify. It’s just enormous. I ­don’t know if ­you’ve tried to get a history out of somebody, but if you ask somebody, “How long has this been bothering you?” or “Where does it hurt?” or “What can you tell me about your prob­lem?,” what you are ­going to get is one big basket full of vague stuff. Let’s say you are having a stomachache and, for example, I ask you what is ­going on and you say, “Well, it started on Monday, and it feels like this, and I have ­these associated symptoms.” You and I would be on the same wavelength, and that would be very helpful to me. I would be so grateful that you could exactly explain what is g­ oing on. In Mexican p ­ eople, almost to the person, no ­matter how long you have known them, you are ­going to get something that is very vague, like, “A while ago, it kind of hurts ­here, it feels like vaguely aching,” typically minimizing the symptoms. It’s just ­really hard to get a good history and ­there are a lot of ideas that I have. Johanna said she thinks this prob­lem relates to a lack of good health care in Mexico and a religious shame about sickness being related to personal sin or moral failing. At the same time, this communication prob­lem could very well relate more to misunderstandings across class differences than across nationalities or ethnicities. As a crude example, the Mexican physicians and nurses I know would respond to t­hese questions in much the same ways I would ­because of their education and professional background, unrelated to the language they speak or their nationality. Most clinicians indicated that the primary health prob­lems of mi­grant farmworkers included diabetes, body pain from work, work-­related injuries, and dental prob­lems. The medical director of the mi­grant clinic in Washington stated that in response to her question, “Are you okay?” many of her mi­grant patients often reply, “Well, it all hurts, but that’s just the way it is.” A retired dentist told me that Mexican ­people wait a long time to go into the dental clinic so that the prob­lems are often so serious that he has to extract

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practices of Mexican patients in relation to traditional healers and so-­called culture-­bound syndromes such as susto.9 Some clinicians blamed the poor health outcomes of their patients on t­ hese beliefs and practices. Johanna, the midwife at the Skagit mi­grant clinic, told me that she had in­ven­ted a cure for sustos that she considered a ­great success. The cure involved chamomile tea and rest from ­house­hold chores. She went on to explain other difficulties she encountered while working with Mexican mi­grant farmworkers.

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their teeth. He explained also that working with Mexican patients was difficult due to what he perceived as ethnic bodily differences: “It’s ge­ne­tics. Their bone structure’s just dif­fer­ent; it’s like ­you’re trying to pull the tooth out of granite. You pray it’ll lift. Your right arm gets about three times the size of your left. You’ll see that in a lot of Mexican p ­ eople, you know, big jaws or real heavy bone structure. Northern Eu­ro­pe­ans have much lighter features.” On the other hand, the physicians in the mi­grant clinics told me that the dental prob­lems of mi­grant workers ­were the result of being given juice too often in their baby ­bottles. Johanna, the midwife, told me that she sees a lot of domestic vio­lence perpetrated by the men against their wives. Her theory was that much of this vio­lence comes from men’s deep disappointment about unmet expectations in the United States. Some of the nurses in the same clinic, however, told me that ­there is very ­little domestic vio­lence among mi­grant farmworkers. Dr. McCaffree added that she sees a high rate of unwed pregnancy and a high rate of depression. The depression, she told me, is masked as alcoholism in the men and as vague aches and pains in the w ­ omen. All the other clinicians told me that the mi­grant workers had lower rates of substance abuse than their U.S. citizen patients. At the same time, Dr. McCaffree’s nurse explained that she sees a lower incidence of depression among the mi­grant patients than the white patients. In addition, ­there is often a misunderstanding about marriage between health professionals and their Triqui patients. The vast majority of Triqui ­people engage in traditional marriage practices, which involve the male paying a bridewealth of approximately $1,500 in San Miguel or $2,500 in the United States to the f­amily of his fiancée. Most ­couples do not have an officially recognized church or state wedding. The l­ egal status of this partnering, then, is complicated b ­ ecause the ­couples do not fill out government marriage forms. Yet for the Triqui p ­ eople, ­these are recognized as marriages. Thus many of the “unwed pregnancies” cited by Dr. McCaffree are likely not as simply categorized.10 In addition to the common invalidation of Triqui marriage by health professionals, another intercultural and ­legal prob­lem surrounding Triqui marriage relates to the ages of the ­couple. Triqui males routinely marry between the ages of sixteen and twenty, and their female partners are often between the ages of fourteen and eigh­teen. According to Triqui ­people and mi­grant health clinicians in Washington and California, the following is a common occurrence. A Triqui ­couple goes to the hospital for the wife to give birth to her first child. During the patient interview, the nurses or social workers use ­simple definitions to determine that the c­ ouple is not legally married and then go on

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to discover that the ­woman is ­under seventeen and the man is seventeen or older. The hospital staff then make contact with law enforcement agencies, which is required by law in some states. The ­woman is placed in the custody of a relative or the court, and the man is convicted of the felony of statutory rape. He is then put in prison (for up to ten years in some states).11 In 2009 the mainstream English-­language media in the United States misrepresented traditional Triqui bridewealth practices in Greenfield, California. Despite the nuanced and contextual statements released by the local chief of police, the mainstream media ran the following ethnocentric story title, “Man Sells ­Daughter for Money, Beer, and Meat.”12 In fact, it appears that the money, alcohol, and meat was the agreed-­upon bridewealth that would allow the wife’s ­family to throw a traditional wedding party. Despite the similarities to mainstream white Protestant marriage traditions that include an expensive wedding party (involving money, beer, and meat), this sensationalist story and the related l­egal ­battle ­were covered nationwide by such news outlets as CNN and the Los Angeles Times. Despite this kind of potential misunderstanding, the nursing staff chose not to report the Triqui ­couples I observed through their first child’s birth, though they had under­gone a traditional marriage and the ages ­were as described above. A ­ fter coming to know the Triqui c­ ouples giving birth, the nursing staff considered the story described above a cruel misunderstanding. The medical director of the clinic in the Skagit Valley told me that a large percentage of workers’ compensation claims by white or Mexican ­people are just “trying to work the system.” She went on to explain that many mi­grants in Texas and California move to Washington ­because they have heard or experienced that the public health plan is good. On a similar note, several of the welfare agents in Madera, California—­including the one who owned the slum apartment in which we lived—­told me that ­there are signs all over Oaxaca telling ­people to go to Madera ­because they can get welfare ­there. Over the course of my fieldwork, however, I never heard a single mi­grant mention welfare or health plans as a reason for their migration. In all my travels through Oaxaca, I never once saw a sign advertising welfare in the United States, much less specifically in Madera, California. In fact, the vast majority of my Triqui companions did not qualify for health and welfare programs in most states ­because they moved too frequently or ­were undocumented. Some Triqui families applied for and received basic short-­term perinatal nutritional support, though this support proved minimal and the pro­cess time-­consuming.

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One of the physicians in the Skagit clinic told me that Mexican p ­ eople in the United States misuse the health care system by trying to get multiple opinions on their sicknesses and the appropriate treatments. Dr. Samuelson, the physician at the same clinic who sees the most work-­related injury cases, contradicted this in certain ways. He performs many of the in­de­pen­ dent medical exams of Spanish speakers for workers’ compensation in the area. He explained that the language barrier often c­ auses prob­lems with testing the reliability of the patient. In addition, he explained that mi­grant patients have a dif­fer­ent mind-­set about pain, and “this is not allowed in the [workers’ compensation] industry.” He explained that when mi­grant patients pull away during certain aspects of workers’ compensation tests, “it is interpreted as faking pain, while in real­ity it is fear of pain.” “So,” he continued, “I w ­ ill go through the same exam and get completely dif­fer­ent results. But the suspicions of malingering have already been raised.” For the few undocumented mi­grants who file workers’ compensation claims due to work injuries, this suspicion leads to prob­lems in their permanent files. Thus, Dr. Samuelson explained, it is often necessary for mi­grant patients to see numerous physicians in order to find one who might treat them with sensitivity. The health professionals with whom I interacted often noticed other differences between the Oaxacans and the mestizo Mexican mi­grant farmworkers. Several physicians and nurses pointed out that their Oaxacan patients are poorer than their other patients. Dr. McCaffree told me, “They seem a lot poorer, and so they ­don’t have access [to health care]. . . . ​Their clothes are a ­little bit dirtier. They tend to be a lot thinner and not much obesity and clothes that ­don’t get changed a lot.” On many occasions, clinicians told me that the health status of Oaxacans is worse than that of other groups. One told me, “­They’re just sicker and have more body pains.” This reflects the health disparities lit­er­a­ture discussed earlier. Clinicians in the field of mi­grant health in Washington and California hold a variety of beliefs about their Mexican mi­grant patients. They consider them respectful, tough, and deserving of quality health care. At the same time, many clinicians see the mi­grant workers as frustrating to work with due to their traditional health practices and vague medical histories. Some clinicians make ethnocentric assumptions about their patients, such as regarding the real­ity of their marriages. Dif­fer­ent clinicians hold contradictory views regarding the prevalence of substance abuse, depression, and the use of workers’ compensation ser­vices in this population. However,

t­hese health professionals seem to agree in blaming certain health conditions, such as dental prob­lems, on their patients’ bodily makeup and cultural be­hav­ior.

Mi­grant Health Care

Bernardo was experiencing a chronic, constant stomachache that made it painful for him to eat, thus causing him to feel weak and slowly lose weight. ­Every year before he left Oaxaca to work in a fish pro­cessing plant in Alaska, he went through several weeks of injections that he explained made him stronger and gave him an appetite. When he arrived home from Alaska weaker and thinner, he underwent this same series of injections again. He attributed the pain to a lifetime of strenuous mi­grant work as well as to being beaten by the (U.S.-­funded) Mexican military as a suspected member of an indigenous rights movement. During one season in which he picked berries on the Tanaka farm, Bernardo went to the local hospital to be seen for his stomach pain. He requested medicines to decrease his pain and increase his appetite. Although Bernardo is an el­derly Triqui person and speaks very l­ittle Spanish, he was seen by an English-­speaking physician while his daughter-­in-­law translated. His daughter-­in-­law is a Mixtec ­woman who speaks no Triqui and ­little En­glish. She did her best translating from Spanish to En­glish. In the chart, the physician defined Bernardo as a “Hispanic” male “who speaks only in Spanish, apparently broken Spanish at that, which is difficult for the Spanish interpreter to understands [sic].” ­Later, the physician indicated his impression: “I must say the history was obtained through an interpreter, and my impression is that the patient tended to perseverate on unrelated t­ hings from the questions that w ­ ere asked, but t­hese ­were usually not translated to me.” With this misunderstood multilayered linguistic barrier, the physician concluded that “he apparently has no past medical history. No medical history.” The extent of the social history is summed up in two sentences: “He lives locally. Works as a common laborer.” ­After misunderstanding the translation of Bernardo being beaten, the physician charted simply that Bernardo “is an old boxer and won­ders if possibly the blunt trauma to his abdomen could contribute to his pres­ent condition.” Due to the temporal and linguistic limitations of the medical interview, the physician was unclear about the location and quality of the pain.

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Bernardo was admitted to the hospital overnight for “chest pain” in order to rule out a heart attack. He was given an exercise test, ­after which the technician noted that “he has superb exercise capacity” and “this is a low risk heart scan.” Bernardo repeatedly explained that he needed medicines to decrease his pain and increase his hunger. He also explained that he needed to be at work on the farm by 3:30 in the after­noon. ­After undergoing the exercise test, Bernardo refused to give a third sample of blood and undergo ultrasound evaluation b ­ ecause he had to get back to work. Bernardo was required to sign an “Against Medical Advice” form before leaving the hospital and was ­later sent a bill for over $3,000. Bernardo’s hospital experience exemplifies many of the prob­lems caused by lack of time and lack of skilled interpreters, both due in large part to a health care financing system built on maximizing profit instead of patient care. As a result of t­ hese structural limitations, the physician assumed Bernardo was a “Hispanic” Spanish speaker, recorded a very limited social history that ignored his migratory status, and determined that ruling out a heart attack was the only impor­tant plan. Bernardo’s repeated requests for treatments for stomach pain and for lack of appetite ­were not acted on. Most poignant and horrifying was the bad faith translation of military torture into Bernardo’s categorization in the permanent rec­ord as “an old boxer.” During my most recent visit to Oaxaca, I stayed again with Bernardo in Juxtlahuaca and visited the private physician who gives him the injections that Bernardo indicated ­were the only remedy that helped his pain and weight loss. I interviewed the physician at night while his clinic was closed temporarily due to an electricity blackout. He told me that Bernardo had a peptic acid prob­lem such as gastritis or an ulcer. He suggested that this gastrointestinal prob­lem was due to eating “too much hot chili, too much fat, and many condiments.” He continued, “[Indigenous ­people] also ­don’t eat at the right time but wait a long time in between meals.” The physician gives Bernardo a pill to decrease his peptic acid levels. He explained that ­there ­were better pills for this, but they w ­ ere too expensive for Bernardo. He recommended that Bernardo drink milk and eat yogurt to help protect his stomach lining. The doctor also gives injections of vitamin B-12 in order to treat what he considers neuropathy (nerve pain). He explained that this neuropathy was due to the fact that indigenous ­people “bend over too much at work and bend too much in their sleep.” Like many of the U.S. clinicians, this physician was not able to see Bernardo’s social and occupational context and instead blamed his suffering on his assumed be­hav­iors and culture. ­Either the physician was not able to

A Contextual Medicine and Apo­liti­cal Cultural Competency

As would be expected in the paradigm of the clinical gaze, the clinicians I spoke to see the individual Triqui bodies in their offices, yet they are unable to engage the social context that produces suffering. It was only infrequently (e.g., Dr. Samuelson and Dr. Goldenson) that I heard a health professional point out the context in which the person lives: conditions in the l­ abor camp, working conditions, or international economic and immigration policies. Yet ­these larger po­liti­cal, economic, and social forces are the fundamental ­causes of their patients’ suffering. At the same time, the health care professionals cannot be blamed for their acontextuality. They, too, are affected by social, economic, and po­liti­cal structures. Much of their blindness to social and po­liti­cal context is caused by the difficult, hectic, and emotionally exhausting circumstances in which they work. It is caused also by the way medical science is thought and taught in the con­temporary world. Most of ­these individuals have chosen their positions in mi­grant clinics ­because they want to help. They have a g­ reat deal of compassion and a sense of calling to this work. Yet the lenses they have been given through which to understand their patients have been narrowly focused, individualistic, and asocial. Physicians in the United States and Mexico are not trained to see the social determinants of health prob­lems, or to hear them when communicated by their patients. This acontextuality is seen when the sections of medical charts reporting social history entirely exclude social realities and when torture is reported as boxing. They are trained, instead, to give most heed to the “objective” information provided by their own physical examinations and, more so, biotechnical blood and radiological tests.13 Thus it is unavoidable that they would fall into the trap of using a narrow lens that functions to decontextualize sickness, transporting it from the realm of politics, power, and in­equality to the realm of the individual body. The most upstream determinants of suffering are left unacknowledged, unaddressed, and untreated. Much like the “antipolitics machine” of development a­ gencies

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perform a sufficiently extensive intake interview to know about Bernardo’s experience of torture or he did not connect this history to the chronic pain. Rather, the practice of biomedicine depoliticizes sickness, functioning in part to erase the structural determinants of suffering such as the po­liti­cal history of military torture and the economic inequalities leading to a lifetime of mi­grant hard ­labor.

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described by Ferguson,14 biomedicine effectively depoliticizes suffering, blaming sickness not on po­liti­cal economic and social structures but rather on individual be­hav­iors, assumed cultural practices, and perceived ethnic body differences. Beyond this acontextual gaze, physicians in North Amer­i­ca ­today are also taught to see behavioral f­actors in health—­such as lifestyle, diet, habits, and addictions. Behavioral health education has been added as part of a laudable move to broaden medical education within the paradigm of biopsychosocial health first described by George Engel in 1977. However, without being trained to consider the global political-­economic structures and local hierarchies that shape the suffering of their patients, health professionals are equipped to see only biological and behavioral determinants of sickness. Symbolically, they are limited to understanding the genesis of sickness as located in the patients: their bodies (the ge­ne­tics mentioned by the dentist), their be­hav­ior (the incorrect bending assumed by the rehabilitation medicine physician), or their culture (the customs invoked by the nurse in San Miguel). Thus well-­meaning clinicians inadvertently add insult to injury, subtly blaming their patients for their suffering. Largely in response to social science critiques of the limited gaze of biomedicine in a multicultural world, biomedical institutions have a­ dopted training in cultural competency.15 In many ways, the field of cultural competency seeks to broaden the clinical gaze in order to avoid ethnocentric assumptions and in­effec­tive interventions. Most mainstream cultural competence training focuses on lists of ste­reo­typical traits of ethnic groups.16 This focus suggests that the culture of the patient is the prob­lem that needs to be understood and the barrier that should be overcome in order to provide effective health care.17 In the formulations of cultural competency, the culture of biomedicine and the structural determinants of health and health care are left largely unexamined. However, the ethnographic data above contradict this focus by showing that it is often the structure and the culture of biomedicine that function as barriers to effective care. As suggested by Jonathan Metzl, medical educators should exchange mainstream cultural competency for training in social analy­sis and “structural competency.”18 Without appreciating the continuum of vio­lence located in ethnic and citizenship hierarchies and international policies that place their patients in injurious conditions in the first place, clinicians often blame the sickness on the patient—­the assumed incorrect manner of bending while picking, the presumed trou­ble with authority, or the expected inappropriate diet. The way one stands while picking berries, if indeed incorrect in some unhealthy

notes 1 2 3 4

Villarejo 2003; Migration News 2003. Davis 2002. Ibid. Sachs 1991.

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way, is only a proximal ingredient of one’s suffering. Ironically, the progressive move to include behavioral health in medical education without the correlate inclusion of social context may be exactly what leads clinicians to blame, even criminalize, the victims of social suffering.19 Even ­those health professionals who are acutely aware of the social determinants of health may resort to biological and behavioral explanations as a defense mechanism against that which they experience as hopeless. Thus the victim of prejudice and economic and historical inequalities is blamed for her predicament. She is blamed for the bad jobs and the poor health she has, even though ­these are outcomes of the social structures by which she is situated. The real­ity of mi­grant health, however, is even more complicated and potentially dangerous. The difficult circumstances and limited gaze of the mi­grant clinic make it impossible for even the most idealistic clinicians to provide effective treatment. Not only are ­these physicians unable to recommend appropriate interventions; they often prescribe in­effec­tive treatments with unintended harmful results. Some of t­hese treatments—­such as returning a patient with an injured knee to full duty work—­can be directly harmful to their patients. Even the interventions of well-­meaning physicians—­for example, pain-­relieving injections and referrals to therapy in order to, among other ­things, accept potentially cruel treatment from supervisors—­may function inadvertently to shore up the unequal social formations causing sickness in the first place. ­These treatments unintentionally depoliticize suffering, thereby buttressing the very structures of oppression causing sickness. The vio­lence enacted by social hierarchies extends from the farm to the mi­grant clinic and back again, despite the impressive values and intentions of ­those in both institutions. The structure of health care must be changed to offer quality care to all patients instead of seeking private profit and cost savings. The con­temporary biobehavioral clinical gaze must be transformed to recognize the social, po­liti­cal, and economic determinants of sickness and health, to include structural competency. In the meanwhile, it is no won­der that my Triqui companions conclude that los médicos no saben nada.

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5 6 7 8 9 10 11 12 13 14 15 16 17 18 19

Martin 1992. Orwell 1937. Bourdieu 1997. Brubaker and Cooper 2000. See also Pine 2008. Rubel 1964; Rubel and Moore 2001. See Holmes 2009. Quinones 1998. See Holmes 2009. See also Good 2001. Ferguson 1990. See Kleinman and Benson 2006. Jenks 2011; Hester 2012; Willen et al. 2010. Jenks 2011; Shaw and Armin 2011. Metzl 2011. See also Terrio 2004.

references Bourdieu, Pierre. 2000 [1997]. Pascalian Meditations. Stanford, CA: Stanford University Press. Brubaker, Rogers, and Frederick Cooper. 2000. “Beyond ‘Identity.’ ” Theory and Society 29: 1–47. Davis, Andrew. 2002. “Unusual Woodburn Office Helps Indigenous Mexicans.” Associated Press Newswires. Ferguson, James. 1990. The Anti-­Politics Machine: Development, Depoliticization, and Bureaucratic Power in Lesotho. Minneapolis: University of Minnesota Press. Good, Mary-­Jo DelVecchio. 2001. “The Biotechnical Embrace.” Culture, Medicine, and Psychiatry 25 (4): 395–410. Hester, Rebecca J. 2012. “The Promise and Paradox of Cultural Competence.” HEC Forum 24 (4): 279–291. Holmes, Seth M. 2009. “­Don’t Misrepresent the Triqui.” Monterey Country Herald. Jan. 29. Jenks, Angela C. 2011. “From ‘List of Traits’ to ‘Open-­Mindedness’: Emerging Issues in Cultural Competence Education.” Culture, Medicine and Psychiatry 35 (2): 209–235. Kleinman, Arthur, and Peter Benson. 2006. “Anthropology in the Clinic: The Prob­lem of Cultural Competency and How to Fix It.” PLoS Medicine 3 (10): e294. Martin, Emily. 1992. The ­Woman in the Body: A Cultural Analy­sis of Reproduction. Boston: Beacon Press. Metzl, Jonathan. 2011. Protest Psychosis: How Schizo­phre­nia Became a Black Disease. Boston: Beacon Press. Migration News. 2003. “Migration Trade and Development.” Migration News 10: 1. Orwell, George. 1937. The Road to Wigan Pier. New York: Harcourt Brace Jovanovich.

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Pine, Adrienne. 2008. Working Hard, Drinking Hard: On Vio­lence and Survival in Honduras. Berkeley: University of California Press. Quinones, Sam. 1998. “ ‘Grapes of Wrath’ South of the Border.” San Samuel, CA: Special to the Examiner. SF Gate. Jan. 11. Rubel, Arthur J. 1964. “The Epidemiology of a Folk Illness: Susto in Hispanic Amer­i­ca.” Ethnology 3 (3): 268–283. Rubel, Arthur J., and Carmella C. Moore. 2001. “The Contribution of Medical Anthropology to a Comparative Study of Culture: Susto and Tuberculosis.” Medical Anthropology Quarterly 15 (4): 440–454. Sachs, Wolfgang, ed. 1991. The Development Dictionary. London: Zed Books. Shaw, Susan J., and Julie Armin. 2011. “The Ethical Self-­Fashioning of Physicians and Health Care Systems in Culturally Appropriate Health Care.” Culture, Medicine and Psychiatry 35 (2): 236–261. Terrio, Susan J. 2004. “Migration, Displacement, and Vio­lence: Prosecuting Romanian Street ­Children at the Paris Palace of Justice.” International Migration 42 (5): 5–33. Villarejo, Don. 2003. “The Health of U.S. Hired Farm Workers.” Annual Review of Public Health 24: 175–193. Willen, Sarah S., Antonio Bullon, and Mary-­Jo DelVecchio Good. 2010. “Opening up a Huge Can of Worms: Reflections on a ‘Cultural Sensitivity’ Course for Psychiatry Residents.” Harvard Review of Psychiatry 18: 247–255.

Anthropology in the Clinic The Prob­lem of Cultural Competency and How to Fix It Arthur Kleinman and Peter Benson

Cultural competency has become a fash­ion­able term for clinicians and researchers. Yet no one can define this term precisely enough to operationalize it in clinical training and best practices. It is clear that culture does m ­ atter in the clinic. Cultural f­ actors are crucial to diagnosis, treatment, and care. They shape health-­related beliefs, be­hav­ iors, and values.1,2 But the large claims about the value of cultural competence for the art of professional care-­giving around the world are simply not supported by robust evaluation research showing that systematic attention to culture ­really improves clinical ser­vices. This lack of evidence is a failure of outcome research to take culture seriously enough to routinely assess the cost-­effectiveness of culturally informed therapeutic practices, not a lack of effort to introduce culturally informed strategies into clinical settings.3

Prob­lems with the Idea of Cultural Competency

One major prob­lem with the idea of cultural competency is that it suggests culture can be reduced to a technical skill for which clinicians can be trained to develop expertise.4 This prob­lem stems from how culture is defined in medicine, which contrasts strikingly with its current use in anthropology—­ the field in which the concept of culture originated.5–9 Culture is often made Arthur Kleinman and Peter Benson, “Anthropology in the Clinic: The Prob­lem of Cultural Competency and How to Fix It,” from Public Library of Science: Medicine 3, no. 10 (2006): e294, 1673–1676.

box 1 ​Case Scenario: Cultural Assumptions May Hinder Practical

Understanding

A medical anthropologist is asked by a pediatrician in California to consult in the care of a Mexican man who is hiv positive. The man’s wife had died of aids one year ago. He has a four-­year-­old son who is hiv positive, but he has not been bringing the child in regularly for care. The explanation given by the clinicians assumed that the prob­ lem turned on a radically dif­fer­ent cultural understanding. What the anthropologist found, though, was to the contrary. This man had a near complete understanding of hiv/aids and its treatment—­largely through the support of a local nonprofit organ­ization aimed at supporting Mexican American patients with hiv. However, he was a very-­ low-­paid bus driver, often working late-­night shifts, and he had no time to take his son to the clinic to receive care for him as regularly as his doctors requested. His failure to attend was not b ­ ecause of cultural differences, but rather his practical, socioeconomic situation. Talking with him and taking into account his “local world” w ­ ere more useful than positing radically dif­fer­ent Mexican health beliefs.

Historically in the health care domain, culture referred almost solely to the domain of the patient and ­family. As seen in the case scenario in box 1, we can also talk about the culture of the professional caregiver—­including both the cultural background of the doctor, nurse, or social worker, and the culture of biomedicine itself—­especially as it is expressed in institutions

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synonymous with ethnicity, nationality, and language. For example, patients of a certain ethnicity—­such as the “Mexican patient”—­are assumed to have a core set of beliefs about illness owing to fixed ethnic traits. Cultural competency becomes a series of “do’s and d ­ on’ts” that define how to treat a patient of a given ethnic background.10 The idea of isolated socie­ties with shared cultural meanings would be rejected by anthropologists ­today, since it leads to dangerous stereotyping—­such as “Chinese believe this,” “Japa­nese believe that,” and so on—as if entire socie­ties or ethnic groups could be described by ­these ­simple slogans.11–13 Another prob­lem is that cultural ­factors are not always central to a case, and might actually hinder a more practical understanding of an episode (see box 1).

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such as hospitals, clinics, and medical schools.14 Indeed, the culture of biomedicine is now seen as key to the transmission of stigma, the incorporation and maintenance of racial bias in institutions, and the development of health disparities across minority groups.15–18

Culture Is Not Static

In anthropology ­today, culture is not seen as homogenous or static. Anthropologists emphasize that culture is not a single variable but rather comprises multiple variables, affecting all aspects of experience. Culture is inseparable from economic, po­liti­cal, religious, psychological, and biological conditions. Culture is a pro­cess through which ordinary activities and conditions take on an emotional tone and a moral meaning for participants. Cultural pro­cesses include the embodiment of meaning in psychophysiological reactions,19 the development of interpersonal attachments,20 the serious per­for­mance of religious practices,21 common-­sense interpretations,22 and the cultivation of collective and individual identity.23 Cultural pro­cesses frequently differ within the same ethnic or social group ­because of differences in age cohort, gender, po­liti­cal association, class, religion, ethnicity, and even personality.

The Importance of Ethnography

It is of course legitimate and highly desirable for clinicians to be sensitive to cultural difference, and to attempt to provide care that deals with cultural issues from an anthropological perspective. We believe that the optimal way to do this is to train clinicians in ethnography. “Ethnography” is the technical term used in anthropology for its core methodology. It refers to an anthropologist’s description of what life is like in a “local world,” a specific setting in a society—­usually one dif­fer­ent from that of the anthropologist’s world. Traditionally, the ethnographer visits a foreign country, learns the language, and, systematically, describes social patterns in a par­tic­u­lar village, neighborhood, or network.24 What sets this apart from other methods of social research is the importance placed on understanding the native’s point of view.25 The ethnographer practices an intensive and imaginative empathy for the experience of the natives—­appreciating and humanly

The Explanatory Models Approach

One of us [AK] introduced the “explanatory models approach,” which is widely used in American medical schools t­oday, as an interview technique (described below) that tries to understand how the social world affects and is affected by illness. Despite its influence, ­we’ve often witnessed misadventure when clinicians and clinical students use explanatory models. They materialize the models as a kind of substance or mea­sure­ment (like hemoglobin, blood pressure, or X-­rays) and use it to end a conversation rather to start a conversation. The moment when the ­human experience of illness is recast into technical disease categories something crucial to the experience is lost ­because it was not validated as an appropriate clinical concern.34 Rather, explanatory models ­ought to open clinicians to ­human communication and set their expert knowledge alongside (not over and above) the patient’s own explanation and viewpoint. Using this approach, clinicians can perform a “mini-­ethnography,” or­ga­nized into a series of six steps. This is a revision of the Cultural Formulation included in the fourth edition of the Diagnostic and Statistical Manual of M ­ ental Disorders (dsm-­iv) (see dsm-­iv, appendix I35).36,27

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engaging with their foreignness,26 and understanding their religion, moral values, and everyday practices.27,28 Ethnography is dif­fer­ent than cultural competency. It eschews the “trait list approach” that understands culture as a set of already-­known ­factors, such as “Chinese eat pork, Jews d ­ on’t.” (Millions of Chinese are vegetarians or are Muslims who do not eat pork; some Jews, including the corresponding author of this paper, love pork.) Ethnography emphasizes engagement with ­others and with the practices that ­people undertake in their local worlds. It also emphasizes the ambivalence that many p ­ eople feel as a result of being between worlds (for example, persons who identify as both African American and Irish, Jewish and Christian, American and French) in a way that cultural competency does not. And ethnography eschews the technical mastery that the term “competency” suggests. Anthropologists and clinicians share a common belief—­that is, the primacy of experience.29–33 The clinician, as an anthropologist of sorts, can empathize with the lived experience of the patient’s illness and try to understand the illness as the patient understands, feels, perceives, and responds to it.

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step 1: ethnic identity  · The first step is to ask about ethnic identity and determine ­whether it ­matters for the patient—­whether it is an impor­ tant part of the patient’s sense of self. As part of this inquiry, it is crucial to acknowledge and affirm a person’s experience of ethnicity and illness. This is basic to any therapeutic interaction and enables a respectful inquiry into the person’s identity. The clinician can communicate a recognition that ­people live their ethnicity differently, that the experience of ethnicity is complicated but impor­tant, and that it bears significance in the health care setting. Treating ethnicity as a m ­ atter of empirical evidence means that its salience depends on the situation. Ethnicity is not an abstract identity, as the dsm-­iv cultural formulation implies, but a vital aspect of how life is lived. Its importance varies from case to case and depends on the person. It defines how ­people see themselves and their place within ­family, work, and social networks. Rather than assuming knowledge of the patient, which can lead to stereotyping, simply asking the patient about ethnicity and its salience is the best way to start. step 2: what is at stake?   ·  The second step is to evaluate what is at stake as patients and their loved ones face an episode of illness. This evaluation may include close relationships, material resources, religious commitments, and even life itself. The question “What is at stake?” can be asked by clinicians; the responses to this question w ­ ill vary within and between ethnic groups, and w ­ ill shed light on the moral lives of patients and their families. step 3: the illness narrative · Step 3 is to reconstruct the patient’s “illness narrative.”38 This involves a series of questions (about one’s explanatory model) aimed at acquiring an understanding of the meaning of illness (box 2).

box 2 ​The Explanatory Models Approach

• What do you call this prob­lem? • What do you believe is the cause of this prob­lem? • What course do you expect it to take? How serious is it? • What do you think this prob­lem does inside your body? • How does it affect your body and your mind?

• What do you most fear about this condition? • What do you most fear about the treatment?

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Source: Chapter 15 in Kleinman, The Illness Narratives38

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The patient and f­amily’s explanatory models can then be used to open up a conversation on cultural meanings that may hold serious implications for care. In this conversation, the clinician should be open to cultural differences in local worlds, and the patient should recognize that doctors do not fit a certain ste­reo­type any more than they themselves do. step 4: psychosocial stresses  · Step 4 is to consider the ongoing stresses and social supports that characterize ­people’s lives. The clinician rec­ords the chief psychosocial prob­lems associated with the illness and its treatment (such as f­ amily tensions, work prob­lems, financial difficulties, and personal anxiety). For example, if the clinicians described in the case scenario in box 1 had carried out step 4, they could have avoided the misunderstanding with their Mexican American patient. The clinician can also list interventions to improve any of the patient’s difficulties, such as professional therapy, self-­treatment, ­family assistance, and alternative or complementary medicine. step 5: influence of culture on clinical relationships  · Step 5 is to examine culture in terms of its influence on clinical relationships. Clinicians are grounded in the world of the patient, in their own personal network, and in the professional world of biomedicine and institutions. One crucial tool in ethnography is the critical self-­reflection that comes from the unsettling but enlightening experience of being between social worlds (for example, the world of the researcher/doctor and the world of the patient/ participant of ethnographic research). So, too, it is impor­tant to train clinicians to unpack the formative effect that the culture of biomedicine and institutions has on the most routine clinical practices—­including bias, inappropriate and excessive use of advanced technology interventions, and, of course, stereotyping. Teaching prac­ti­tion­ers to consider the effects of the culture of biomedicine is contrary to the view of the expert as authority and to the media’s view that technical expertise is always the best answer. The statement “First do no harm by stereotyping” should appear on the walls of all clinics that cater to immigrant, refugee, and ethnic minority populations. And yet since culture does not only apply to ­these groups, it ­ought to appear on the walls of all clinics.

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step 6: the prob­lems of a cultural competency approach · Fi­nally, step 6 is to take into account the question of efficacy—­namely, “Does this intervention actually work in par­tic­u­lar cases?” ­There are also potential side-­effects. ­Every intervention has potential unwanted effects, and this is also true of a culturalist approach. Perhaps the most serious side-­effect of cultural competency is that attention to cultural difference can be interpreted by patients and families as intrusive, and might even contribute to a sense of being singled out and stigmatized.3,11,12 Another danger is that overemphasis on cultural difference can lead to the mistaken idea that if we can only identify the cultural root of the prob­lem, it can be resolved. The situation is usually much more complicated. For example, in her influential book, The Spirit Catches You and You Fall Down, Ann Fadiman shows that while inattention to culturally impor­tant ­factors creates havoc in the care of a young Hmong patient with epilepsy, once the cultural issues are addressed, ­there is still no easy resolution.33 Instead, a w ­ hole new series of questions is raised.

Determining What Is at Stake for the Patient

The case history in box 3 gives an example of how simply using culturally appropriate terms to explain ­people’s life stories helps the health professionals to restore a “broken” relationship and allows treatment to continue. This case is not settled, nor is it an example of any kind of technical competency. But ­there are two illuminating aspects of this case. First, it is impor­tant that health care providers do not stigmatize or ste­reo­type patients. This is a case study of an individual. Not all Chinese ­people fit this life story, and many con­temporary Chinese now accept the diagnosis of depression. Second, culture is not just what patients have; clinicians also participate in cultural worlds. A physician too rigidly oriented around the classification system of biomedicine might find it unacceptable to use lay classifications for the treatment.

box 3 ​Case Scenario: The Importance of Using Culturally Appropriate

Terms to Explain P ­ eople’s Life Stories

Miss Lin is a 24-­year-­old exchange student from China in gradu­ ate school in the United States, where she developed symptoms of

For the late French moral phi­los­o­pher Emmanuel Levinas, in the face of a person’s suffering, the first ethical task is acknowledgement.39 Face-­to-­face moral issues precede and take pre­ce­dence over epistemological and cultural ones.40 ­There is something more basic and more crucial than cultural competency in understanding the life of the patient, and that is the moral meaning of suffering—­what is at stake for the patient; what the patient, at a deep level, stands to gain or lose. The explanatory models approach does not ask, for example, “What do Mexicans call this prob­lem?” It asks, “What do you call this prob­lem?” and thus a direct and immediate appeal is made to the patient as an individual, not as a representative of a group.

Conclusion

What clinicians want to understand through the mini-­ethnography is what ­really ­matters—­what is ­really at stake for patients, their families, and, at times, their communities, and also what is at stake for themselves. If we ­were to reduce the six steps of culturally informed care to one activity that even the busiest clinician should be able to find time to do, it would be to routinely ask patients (and, where appropriate, ­family members) what ­matters

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palpitations, shortness of breath, dizziness, fatigue, and headaches. A thorough medical workup leaves the symptoms unexplained. A psychiatric con­sul­tant diagnoses a mixed depressive-­anxiety disorder. Miss Lin is placed on antidepressants and does cognitive-­behavioral psychotherapy, with symptoms getting better over a six-­week period; but they do not dis­appear completely. Subsequently, the patient drops out of treatment and refuses further contact with the medical system. Anthropological consultation discovers that Miss Lin comes from a Chinese ­family in Beijing—­one of her cousins is hospitalized with chronic ­mental illness. So power­ ful is the stigma of that illness for this ­family that Miss Lin cannot conceive of the idea that she is suffering from a ­mental disorder, and refuses to deal with her American health care providers ­because they use the terms “anxiety disorder” and “depressive disorder.” In this instance, she herself points out that in China the term that is used is neurasthenia or a stress-­related condition. On the anthropologist’s urging, clinicians reconnect with Miss Lin ­under this label.

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most to them in the experience of illness and treatment. The clinicians can then use that crucial information in thinking through treatment decisions and negotiating with patients. This is much dif­fer­ent than cultural competency. Finding out what ­matters most to another person is not a technical skill. It is an elective affinity to the patient. This orientation becomes part of the practitioner’s sense of self, and interpersonal skills become an impor­tant part of the practitioner’s clinical resources.41 It is what Franz Kafka said “a born doctor” has: “a hunger for ­people.”42 And its main thrust is to focus on the patient as an individual, not a ste­reo­type; as a ­human being facing danger and uncertainty, not merely a case; as an opportunity for the doctor to engage in an essential moral task, not an issue in cost-­accounting.43

acknowl­edgments The two case scenarios included in this article are fictional, but they are inspired by the real clinical experience of the authors.

notes 1 Kleinman A. Culture and depression. N Engl J Med. 2004;351:951–952. 2 Kleinman A. Patients and Healers in the Context of Culture: An Exploration of the Borderland Between Anthropology, Medicine, and Psychiatry. Berkeley, CA: University of California Press; 1981. 3 Kleinman A. Culture and Psychiatric Diagnosis and Treatment: What Are the Necessary Therapeutic Skills? Utrecht, Holland: Trimbos-­Instituut; 2005. 4 DelVecchio Good  M. American Medicine: The Quest for Competence. Berkeley, CA: University of California Press; 1995. 5 Stocking GW Jr, ed. Volksgeist as Method and Ethic: Essays on Boasian Ethnography and the German Anthropological Tradition. Madison, WI: University of Wisconsin Press; 1996. 6 Abu-­Lughod  L. Writing against culture. In: Fox RG, ed. Recapturing Anthropology: Working in the Pres­ent. Santa Fe, NM: School of American Research Press; 1991:137–162. 7 Clifford J, Marcus GE, eds. Writing Culture: The Poetics and Politics of Ethnography: A School of American Research Advanced Seminar. Berkeley, CA: University of California Press; 1986. 8 Gupta A, Ferguson J, eds. Culture, Power, Place: Explorations in Critical Anthropology. Durham, NC: Duke University Press; 1996.

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9 Fischer MMJ. Emergent Forms of Life and the Anthropological Voice. Durham, NC: Duke University Press; 2003. 10 Betancourt JR. Cultural competence—­marginal or mainstream movement? N Eng J Med. 2004;351:953–954. 11 Taylor J. The story catches you and you fall down: tragedy, ethnography, and “cultural competence.” Med Anthropol Q. 2003;17:159–181. 12 Lee SA, Farrell M. Is cultural competency a backdoor to racism? Anthropology News. ­ df​/­rethinking​/l­ ee​_­farrell​ 2006;47(3):9–10. Available: http://­raceproject​.­aaanet​.­org​/p .­pdf. Accessed 10 August 2006. 13 Green JW. On cultural competence. Anthropology News. 2006;47(5):3. 14 Taylor  J. Confronting “culture” in medicine’s “culture of no culture.” Acad Med. 2003;78:555–559. 15 Lee S, Lee M, Chiu M, Kleinman  A. Experience of social stigma by ­people with schizo­phre­nia in Hong Kong. Br J Psychiatry. 2005;186:153–157. 16 Keusch GT, Wilentz J, Kleinman A. Stigma and global health: developing a research agenda. Lancet. 2006;367:525–527. 17 Wailoo K. ­Dying in the City of the Blues: Sickle Cell Anemia and the Politics of Race and Health. Chapel Hill, NC: University of North Carolina Press. 18 United States Department of Health and ­Human Ser­vices [HHS]. ­Mental health: A report of the Surgeon General. Washington (D.C.): HHS; 1999. Available: http://­www​ .­mentalhealth​.s­ amhsa​.g­ ov​/c­ mhs​/­surgeongeneral​/­surgeongeneralrpt​.a­ s. Accessed 10 August 2006. 19 Moerman DE. Explanatory mechanisms for placebo effects: Cultural influences and the meaning response. In: Guess HA, Kleinman A, Kusek JW, Engel LW, eds. The Science of the Placebo: T ­ oward an Interdisciplinary Research Agenda. London: bmj Books; 2002:77–107. 20 Goffman E. The Pre­sen­ta­tion of Self in Everyday Life. New York: Anchor; 1959. 21 Barth F. Cosmologies in the Making: A Generative Approach to Cultural Variation in Inner New Guinea. Cambridge: Cambridge University Press; 1987. 22 Sahlins M. Culture and Practical Reason. Chicago: University of Chicago Press; 1978. 259 p. 23 Holland D, Lachicotte W Jr, Skinner D, Cain  C. Identity and Agency in Cultural Worlds. Cambridge: Harvard University Press; 1996. 24 Kleinman A. Moral experience and ethical reflection: can medical anthropology reconcile them? Daedalus. 1999;128:69–99. 25 Geertz C. Local Knowledge. New York: Basic Books; 1983. 26 Jackson M. ­Things As They Are. Bloomington, IN: University of Indiana Press. 27 Geertz C. The Interpretation of Cultures. New York: Basic Books; 1972. 28 Marcus G, Fischer MMJ. Anthropology As Cultural Critique. Chicago: University of Chicago Press; 1986. 29 Slobodin R. W. H. R. Rivers: Pioneer Anthropologist, Psychiatrist of the Ghost Road. Stroud, UK: Sutton; 1997. 30 Barker P. Regeneration. New York: Penguin; 1991. 31 Sacks O. An Anthropologist on Mars. New York: Vintage; 1996.

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32 Konner M. Becoming a Doctor. New York: Penguin; 1988. 33 Fadiman A. The Spirit Catches You and You Fall Down. New York: Farrar, Straus and Giroux; 1998. 34 Kleinman A, Benson P. La vida moral de los que sufren de la enfermedad y el fracaso existencial de la medicina. Monografías Humanitas. 2004;2:17–26. 35 [Anonymous]. Diagnostic and Statistical Manual of M ­ ental Disorders, 4th  ed. Washington, DC: American Psychiatric Association; 1994. Available: http://­www​ .­psychiatryonline​.­com​/­resourceTOC​.­aspx​?­resourceID​=1­ . Accessed 10 August 2006. 36 Novins DK, Bechtold DW, Sack WH, Thompson J, Car­ter DR, et  al. The dsm-­iv outline for cultural formulation: A critical demonstration with American Indian ­children. J Am Acad Child Adolesc Psychiatry. 1997;36:1244–1251. 37 Mezzich JE, Kirmayer LJ, Kleinman A, Fabrega H Jr, Parron DL, et al. The place of culture in dsm-­iv. J Nerv Ment Dis. 1999;187:457–464. 38 Kleinman A. The Illness Narratives: Suffering, Healing, and the H ­ uman Condition. New York: Basic Books; 1988. 39 Levinas  E. Useless suffering. In: Smith MB, Harshav B, translators. Entre Nous: Thinking-­of-­the-­Other. New York: Columbia University Press; 2000:91–101. 40 Levinas E. Other­wise Than Being: Or Beyond Essence. Pittsburgh: Duquesne University Press; 1998. 41 Goethe, JW. Elective Affinities. New York: Penguin; 1978.. 42 Lensing LA (2003 February 28) Franz would be with us ­here. Times Literary Supplement. February 28, 2003:13–15. 43 Kleinman A. What ­Really ­Matters: Living a Moral Life Amidst Uncertainty and Danger. Oxford: Oxford University Press; 2006.

Beyond Cultural Competence Applying Humility to Clinical Settings Linda M. Hunt

In recent years, the concept of “culture” has captured the imagination of a broad cross section of health care providers and policy makers. An increasingly diverse and multicultural society is inspiring health care providers to strive to develop cultural sensitivity and cultural competence. Virtually ­every health profession has made cultural competency a part of its curriculum, and many health care institutions are requiring cultural sensitivity training for personnel (American Medical Association, 1999). Such programs are generally designed to sensitize health providers to the special needs and vulnerabilities of dif­fer­ent populations, with the goal of providing accessible and appropriate care to all. The emphasis in this movement has clearly been focused on members of “underserved” and “underrepresented” racial and ethnic minority groups. Developing the cultural competence of health professionals is intended to minimize cultural barriers to health care and make health ser­vices more “user friendly” to culturally diverse subgroups, and thereby help to reduce their disproportionate burden of poor health. Health providers are encouraged to explore the traditional cultural concepts and practices of such patients, and to develop culturally appropriate models for clinical interactions, treatment protocols, and health education efforts (Carrillo, Green, and Betancourt, 1999). Despite widespread popularity, cultural competency remains a vaguely defined goal, with no explicit criteria established for its accomplishment or assessment. This lack may in part be due to the elusive nature of its central construct: culture. Linda M. Hunt, “Beyond Cultural Competence: Applying Humility to Clinical Settings,” from Park Ridge Center Bulletin 24 (2001): 3–4. Copyright © 2013 by The Park Ridge Center for Health, Faith, and Ethics. Reprinted by permission.

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Definitions of “culture” are multiple, broad, and notably ambiguous. While ­there is no agreed-­upon definition of culture, the classic definition by E. B. Tylor in 1871 is widely cited in anthropology textbooks: “Culture . . . ​is that complex ­whole which includes knowledge, belief, art, morals, law, custom and any other capabilities and habits acquired by man as a member of society” (Tylor, 1871:1). Most definitions of culture emphasize that it is complex and dynamic, comprised of the shared solutions to prob­lems faced by the group. ­These solutions include technologies, beliefs, and be­hav­iors. Culture does not determine be­hav­ior, but affords group members a repertoire of ideas and pos­si­ble actions, providing the framework through which they understand themselves, their environment, and their experiences. Culture is a complex set of relationships, responses, and interpretations that must be understood, not as a body of discrete traits, but as an integrated system of orientations and practices generated within a specific socioeconomic context. Culture is ever changing and always being revised within the dynamic context of its enactment. Culture is neither a blueprint nor an identity; individuals choose between vari­ous cultural options and, in our multicultural society, many times choose widely between the options offered by a variety of cultural traditions. It is not pos­si­ble to predict the beliefs and be­hav­iors of individuals based on their race, ethnicity, or national origin (O’Connor, 1996). Individuals’ group membership cannot be assumed to indicate their culture ­because ­those who share a group label may variously enact culture. In its zeal to encourage re­spect for cultural difference, the cultural competency movement has sometimes lost sight of ­these impor­tant features of the concept of culture. Instead it has too often represented culture as a decontextualized set of traits providing a template for the perceptions and be­hav­iors of group members. A burgeoning lit­er­a­ture on cultural diversity pres­ents the reader with veritable laundry lists of traditional beliefs and practices ostensibly characteristic of par­tic­u­lar ethnic groups. This approach encourages the questionable notion that immigrants and certain ethnic and racial minorities are particularly driven by traditionalism (Hunt, Schneider, and Comer, 2004). The emphasis in this genre is on difference, pitting the exotic and esoteric against mainstream or conventional beliefs that remain unnamed and unexplored. The misconception, common in clinical settings, that culture can be understood as a set of discrete traits, has led some mistakenly to treat culture as an

Cultural Humility

Such pitfalls may be avoided by more subtly integrating the concept of culture with the clinical agenda. The starting point for such an approach would not be an examination of the patient’s belief system, but careful consideration by health care providers of the assumptions and beliefs that are embedded in their own understandings and goals in the clinical encounter (O’Connor, 1996). Training for cultural competency, with its emphasis on promoting understanding of the “cultural” client, has often neglected consideration of the providers’ worldview. In the alternative approach, rather than learning to identify and respond to sets of culturally specific traits, the culturally competent provider would be taught to develop what might be called cultural humility. Cultural humility has been described by Melanie Tervalon and Jann Murray-­Garcia as a lifelong pro­cess of self-­reflection and self-­critique. Cultural humility does not require mastery of lists of “dif­fer­ent” or peculiar beliefs and be­hav­iors supposedly pertaining to certain groups of patients. Rather, the provider is encouraged to develop a respectful partnership with each patient through patient-­focused interviewing, exploring similarities and differences between his own and each patient’s priorities, goals, and capacities. In this model, the most serious barrier to culturally appropriate care is not a lack of knowledge of the details of any given cultural orientation, but the provider’s failure to develop self-­awareness and a respectful attitude ­toward diverse points of view.

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explanatory variable, subject to prediction and control. In such applications, specific ethnic cultures are represented as a codified body of characteristics that can be identified and then ­either modified or manipulated to facilitate clinical goals (Santiago-­Irizarry, 1996). Paradoxically, in such approaches, what originated in a desire to promote re­spect for individual differences may instead promote stereotyping and essentializing (Carillo, Green, and Betancourt, 1999). This pro­cess of reifying presumed difference may have the unintended consequence of bolstering a sense of group bound­aries (Santiago-­Irizarry, 1996). It may also reinforce the belief that culture can be diagnosed and treated, that exotic or unfamiliar beliefs and be­hav­iors of members of already disempowered subgroups should be controlled and adjusted to resemble norms of the dominant group.

Linda M. Hunt

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Effectively exploring cultural issues in the clinic should begin with recognition that “cultural difference” refers to a relationship between two perspectives. Identifying difference requires contrasting two orientations: the provider’s and the patient’s. Culturally competent providers develop skills for exploring the existence and importance of differences in the basic assumptions, expectations, and goals they and their patients bring to any clinical interaction. This kind of reflexive attentiveness should not be limited only to ­those ­people who are perceived to be culturally “other,” but can be useful in any clinical encounter. The ideal conclusion of this kind of cross-­cultural exploration would be to develop an approach to managing clinical prob­lems based on negotiation between the two perspectives. Due to institutional, time, and other pragmatic limitations of the clinical setting, as well as social, economic, and other practical restrictions faced by patients, the ideal of reaching a negotiated plan of action may not be feasible. Still, following the princi­ple of cultural humility, a culturally competent provider should be open and flexible enough to be able to identify the presence and importance of differences between her orientation and that of each patient, and to explore compromises that would be acceptable to both. This strategy does not call for the health care provider to become an expert in cultural minutiae, nor to act as a minister or an herbalist. Ideally, being appropriately cognizant of and responsive to cultural issues should not be thought of as reaching a “competency” so much as engaging in an ongoing pro­cess of honing and applying skills for self-­awareness and for respectful recognition of the unique perspective each patient brings to the clinical encounter.

references American Medical Association. 1999. Cultural Competency Compendium. Chicago: American Medical Association. Carrillo, J. E., A. R. Green, and J. R. Betancourt. 1999. Cross-­cultural primary care: A patient-­based approach. [See comment]. Annals of Internal Medicine 130(10):829–834. Hunt, L. M., S. Schneider, and B. Comer. 2004. Should “acculturation” be a variable in health research? A critical review of research on U.S. Hispanics. Soc.Sci.Med. 59(5):973–986. O’Connor, B. B. 1996. Promoting cultural competence in hiv/aids care. Journal of the Association of Nurses in aids Care 7(Suppl 1):41–53. Santiago-­Irizarry, V.. 1996. Culture as cure. Cultural Anthropology 11(1):3–24.

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Tervalon, M., and J. Murray-­Garcia. 1998. Cultural humility versus cultural competence: A critical distinction in defining physician training outcomes in multicultural education. [Review] [32 refs]. Journal of Health Care for the Poor & Underserved 9(2):117–125. Tylor, E. B. 1871. Primitive Culture: Researches into the Development of My­thol­ogy, Philosophy, Religion, Art and Custom. London: John Murray.

The Racist Patient Sachin H. Jain

In my final months of residency, I was summoned to see an angry patient. Mr. R. was furious that our pharmacy did not stock his brand of insulin. He wanted to issue a complaint. “You guys always mess up my insulin whenever I am h ­ ere. I told the other doctor, and now I’m telling you. You guys just ­can’t get it right.” “I’m sorry,” I told him. “If you prefer, your f­ amily can bring your insulin from home and our nurses can administer it. Would that be an acceptable solution?” “You ­people are so incompetent.” Uncertain of how I might best diffuse the situation, I looked uncomfortably in the direction of my patient’s son, who was seated at the bedside. “You look at me when I talk to you,” Mr. R. commanded. “­Don’t you look at him.” “I’m sorry. Why ­don’t I come back ­later?” As I uncomfortably walked out of the room, he launched a grenade. “Why ­don’t you go back to India!” On pure instinct, I responded, “Why ­don’t you leave our [expletive] hospital?” To underscore my point, I repeated myself. I exited the room in a cold sweat. Much of our clinical training focuses on how to modulate our personal style to accommodate patients. We take doctoring courses that urge compassion, empathy, and cultural sensitivity. We undergo objective, structured clinical examinations that certify our interpersonal skills. Our preceptors advise us on subtle techniques and gestures to ensure that patients feel safe, secure, and confident in our care. Yet, as I reflected on what happened that night, I realized that no one had ever raised the possibility that I might one day be hurt by a patient’s words or Sachin  H. Jain, “The Racist Patient,” from Annals of Internal Medicine 158, no.  8 (2013): 632. Reprinted by permission of American College of Physicians.

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actions. What are our obligations when we are the subject of their inhumanity, cruelty, or intolerance? When the patients whom we are treating fail to express the same decency that they demand? The prevailing sentiment is that we are supposed to be “better” than our patients. We are supposed to be able to ignore unpleasant commentary, maintain aplomb, intellectualize difficult situations, and understand the roots of their discontent. This view was reinforced by one of my colleagues who was taking call with me that night. In his eyes, I had clearly wronged, and I might consider apologizing to the patient. “­Don’t they teach us not to do that? ­You’re better than that,” he scolded when I shared my story. “You have to learn to ignore that stuff and rise above it.” He expressed concern that the patient might report me to our hospital’s patient relations committee and that I would be found guilty of some kind of clinical misconduct. Another colleague was ready to fast-­forward through my upset feelings and tried to make light of the fact that I, indeed, had a forthcoming trip to my ancestral homeland. “It is kind of funny, if you think of it that way.” But the real­ity was that I was not above reacting to Mr. R.’s contempt for me, nor did I feel like humor would help me to move on from the situation. When Mr. R. stopped seeing me as his physician or caregiver, but instead as a foreign face, I was no longer a proud physician at the hospital where I was training. Instead, I was reduced to a passive subject of a xenophobe’s abuse. ­After years of feeling that my race was a nonissue, I was subjected to the same kind of hurtful name-­calling that I faced in childhood. Even as self-­ loathing for not having thicker skin began to creep in, I deci­ded that, on this occasion, my feelings would count. The following morning, I spoke to my supervising attending physician and absolved myself of ­future interactions with Mr. R. He and the intern on ser­vice would sort out the patient’s care without my input. ­After rounding on our other patients that morning, I left the hospital with a surprising new sense that, even as I had chosen a profession that calls on me to serve, ­there are clear limits to that ser­vice that I am unwilling to compromise.

The Social Determinants of Health Coming of Age Paula Braveman, Susan Egerter, and David R. Williams

Introduction Growing Attention in the United States to the Social Determinants of Health

The impact of absolute material deprivation—­grossly inadequate food, clothing, shelter, ­water, and sanitation—on health has been recognized for centuries;93 ­until relatively recently, discussions of socioeconomic influences on health in the United States focused primarily on links between poverty and health. Over the past 15 to 20 years, however, a new discourse on social ­factors and health—­with wider relevance to the general population—­has emerged in the United States, building on earlier work in Eu­rope and Canada. ­There is a rapidly growing lit­er­a­ture on the social (including economic) determinants of health (sdoh) in the United States and elsewhere. The concept is becoming far less marginal in the U.S. public health realm in general, not only in academia; the sdoh have received increasing attention from public health and nonprofit agencies.21,29,88,90,113 This growing momentum reflects a confluence of several phenomena: First, an accumulating critical mass of knowledge in social and biomedical sciences from the United States and other countries1,10,123 has led to increased understanding of how social ­factors influence health and has enhanced the scientific credibility of relevant efforts. Notable recent initiatives include the World Health Organ­ization (who) Commission on the Social Determinants of Health,122 the MacArthur Foundation Network on Socioeconomic Status Paula Braveman, Susan Egerter, and David R. Williams, “The Social Determinants of Health: Coming of Age,” from Annual Review of Public Health 32 (2011): 381–398. Copyright © 2011 by Annual Reviews, http://­www​.­annualreviews​.­org. Reproduced with permission of Annual Review of Public Health.

Upstream and Downstream Social Determinants of Health

The term social determinant of health is often used to refer broadly to any nonmedical ­factors influencing health, including health-­related knowledge, attitudes, beliefs, or be­hav­iors (such as smoking). Th ­ ese ­factors, however, represent only the most downstream determinants in the causal pathways influencing health; they are ­shaped by more upstream determinants. To illustrate the upstream/downstream meta­phor, consider p ­ eople living near a river who become ill from drinking ­water contaminated by toxic chemicals originating from a factory located upstream. Although drinking the contaminated ­water is the most proximate or downstream cause of illness, the more fundamental (yet potentially less evident, given its temporal and physical distance from t­hose affected) cause is the upstream dumping of chemicals. A downstream remedy might recommend that individuals buy filters to treat the contaminated ­water before drinking; b ­ ecause more affluent individuals could better afford the filters or bottled ­water, socioeconomic disparities in illness would be expected. The upstream solution, focused on the source of contamination, would end the factory’s dumping. Although t­ hese concepts may make intuitive sense, the causal pathways linking upstream determinants with downstream determinants and, ultimately, with health, are typically long and complex, often involving multiple intervening and potentially interacting f­actors along the way. This complexity generally makes it easier to study—­and address—­ downstream determinants, at the risk of failing to address fundamental ­causes.

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and Health,111 and the Robert Wood Johnson Foundation (rwjf) Commission to Build a Healthier Amer­i­ca.91 Incremental improvements in health with increasing social advantage have now been observed in the United States14 as well as in Eu­rope,92,96 indicating the relevance of sdoh for middle-­class as well as the most disadvantaged Americans. Systematic efforts have disseminated this knowledge and made it compelling for broader U.S. audiences.17,91 An increasing focus among U.S. researchers, health agencies, and advocates on the concept of health equity has also contributed, encompassing the spectrum of ­causes—­including social determinants—of racial/ethnic and other social disparities in health that raise concerns about justice.8,15,79,88,113 Fi­nally, U.S. public health leaders and researchers have increasingly recognized that the dramatic health prob­lems we face cannot be successfully addressed by medical care alone. The low U.S. ranking on key health indicators internationally has continued to fall as our medical expenditures skyrocket, far outstripping ­those of healthier nations.

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Economic and social opportunities and resources

Braveman, Egerter, and Williams

Living and working conditions in homes and communities

Medical care

Personal behavior

HEALTH figure 1 ​What influences health? Upstream and downstream determinants.

This article focuses on the more upstream social determinants of health— the f­ actors that play a more fundamental causal role and represent the most impor­tant opportunities for improving health and reducing health disparities. Figure 1 illustrates the conceptual framework for the rwjf Commission’s work. Although the relationships are more complex, this simplified schema highlights several impor­tant concepts. First, it shows that health-­ related be­hav­iors and receipt of recommended medical care (key downstream determinants of an individual’s health) do not occur in a vacuum. Rather, t­ hese f­ actors are ­shaped by more upstream determinants related to the living and working conditions that can influence health both directly (e.g., through toxic exposures or stressful experiences) and indirectly (by shaping the health-­related choices that individuals have and make for themselves and their families). The diagram highlights how health is ­shaped not only by living and working conditions, but also by even more upstream determinants that reflect the economic and social resources and opportunities that influence an individual’s access to health-­promoting living and working conditions and to healthy choices. What Do We Know about the Role of Social ­Factors in Influencing Health? The Patterns of Association between Social ­Factors and Health

Evidence from de­cades of research examining associations between key social ­factors—­primarily educational attainment and income in the United States and occupational grade (ranking) in Europe—­and health outcomes

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