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When AIDS was first recognized in 1981, most experts believed that it was a plague, a virulent unexpected disease. They thought AIDS, as a plague, would resemble the great epidemics of the past: it would be devastating but would soon subside, perhaps never to return. By the middle 1980s, however, it became increasingly clear that AIDS was a chronic infection, not a classic plague.
In this follow-up to AIDS: The Burdens of History, editors Elizabeth Fee and Daniel M. Fox present essays that describe how AIDS has come to be regarded as a chronic disease. Representing diverse fields and professions, the twenty-three contributors to this work use historical methods to analyze politics and public policy, human rights issues, and the changing populations with HIV infection. They examine the federal government's testing of drugs for cancer and HIV, and show how the policy makers' choice of a specific historical model (chronic disease versus plague) affected their decisions. A powerful photo essay reveals the strengths of women from various backgrounds and lifestyles who are coping with HIV. A sensitive account of the complex relationships of the gay community to AIDS is included. Finally, several contributors provide a sampling of international perspectives on the impact of AIDS in other nations.
Acquired Immune Deficiency Syndrome—AIDS—has stimulated more interest in history than any other disease of modern times. Since the epidemic was first identified in 1981, scientists, physicians, public officials, and journalists have frequently raised historical questions. Most often these questions have been about contemporary social and epidemiological history: Why did the disease emerge when and where it did? How has it spread among members of particular groups? Others have asked how societies have responded to epidemics in the past, and still others have questioned how the past will affect the future: What does the history of medical science and public health in this century suggest about our ability to control the epidemic and eventually to cure the disease?
These urgent historical questions are being asked at a time when the study of history often appears less relevant to public affairs than it did in the past. For more than a generation, men and women who rely primarily on historical methods have been losing influence as educators and as advisors to public officials.Practitioners of historical methods once dominated the social sciences. Historical inquiry was also essential for the study of epidemiology and public health. In recent decades, however, historical methods have become subordinate to experimentalism and model building in university curricula for the social sciences and public health and in the priorities of most of the organizations that sponsor research in the hope of ameliorating social problems. Some historians have helped create this situation by insisting on professional detachment, but, in fact, most people who use historical methods have had little choice but to do research for its own sake, whether their discipline is history itself, sociology, economics, political science, literary studies, or epidemiology. Historians, increasingly, have been writing for other historians, with little hope that they can help inform or shape the directions of public policy.
A full discussion of the complicated causes of the decline of history as a basic discipline of public policy is outside the scope of this volume. These causes include changes in priorities at all levels of education, a widely shared assumption in our culture that all problems will ultimately be solved by "hard" (quantitative, experimental) research, and, not least, a loss of interest in the relevance of their work among many scholars who use historical methods.
The diminished status of historical methods of analysis has not, of course, meant that history has disappeared from public discourse. Most people have continued to behave as if interpretations of the past are important to them. Generalizations about history abound in learned journals and in the press and public documents. This history is usually drawn from institutional memory (a euphemism for long-time employees); often it is oral tradition—particularly in the professions. Sometimes the generalizations are derived from a hurried reading of a few books or articles or from several telephone calls to historians.
Examples of this superficial use of history have been plentiful during the AIDS epidemic. Lack of serious attention to historical analysis leads to quick and crude generalizations. Here are a few problematic statements that have been made many times:
Basic research should receive more funds because in the past this has been the path to discovering the causes and cures for diseases.
There is a long historical record of public health workers protecting the confidentiality of the people they screen and test.
Authority has always prevailed over liberty during periods of social terror about infectious disease.
Medical progress for more than a century has made plain the fundamental biological origins of disease.
Some readers, even some historians, who read these statements quickly may wonder what is wrong with them. Each is only a partial account of evidence from the past and is therefore a dangerous basisfor action in the present. Each statement, moreover, caricatures the complex ways that our descriptions of the past shape our sense of possibilities in the present. Each is a simplistic statement; people who know the pertinent historical data would respond: "not quite."
The authors in this volume offer a more thorough reading of the history of infectious diseases. The chapters exemplify some of the ways that the rigorous application of historical methods can contribute to public understanding of the AIDS epidemic.
The phrase historical methods requires more precise definition. It is a way of thinking and acting on information to create a nuanced description of events in the past. The information is invariably primary data: the records left by contemporaries. These records are usually words and numbers (both published and unpublished), images and objects. What other historians have written about these records—secondary sources—are hypotheses about the past grounded in primary data. These hypotheses must repeatedly be tested against the data in which they are grounded and for their power to explain newly discovered primary sources.
Historians create nuanced descriptions for several purposes. Some seek to recreate the past as contemporaries would have experienced it. Others try to discern patterns in events over time, and thus interpret primary sources in ways that would have astonished contemporaries. Many historians want both to discover historical patterns and accurately to reflect the lived experience of the past. In addition, historians are always conscious of the culturally specific, and hence are wary of positing universal principles.
Historical methods change as frequently as other areas of scientific discourse. At any time, moreover, people who use historical methods disagree about major issues of theory and practice. The contributors to this volume hold various views on controversial historiographic issues, some of which are evident in their papers. Nevertheless, the authors share a number of historiographic principles, no matter what their original discipline. They share them with most people who use historical methods to study health affairs in our time. The three most important of these principles are (1) cautious adherence to "social constructionism," (2) profound skepticism about historicism, and (3) wariness about "presentism." We will describe each of these in more detail.
Social constructionists, to oversimplify, hold that historical reality is created by people; that is, it does not exist as a truth waiting to be discovered. Some social constructionists include the data of the biologicaland physical sciences in their analysis, arguing that the institutions and procedures of these disciplines are the result of complex social interactions. The human body, they argue, has no historical existence except in primary sources about how it has been perceived and described by members of different societies at different times. Other historians, though sympathetic to social constructionist interpretations of the history of disease and medical practice, reject the radical relativism that denies that knowledge in the biological sciences can be independent of its social context. Still others remain uncertain about the proper scope of the theory of social construction.
The second principle, skepticism about historicism, is less controversial. Few historians now insist, as most of our predecessors did until a few decades ago, that societies or nations evolve or unfold toward goals that must be discerned by historical research: from, for example, authoritarianism toward democracy, from subordination to hegemony, from primitive ("underdeveloped") to mature ("developed"), even from capitalism to a classless society. Although most scholars argue that in some areas—medical knowledge, for instance—beneficial advance ("progress") has occurred in recent centuries, hardly anyone still insists that the human condition in general has been progressing as a result of inexorable historical change.
The third principle, wariness about presentism, is probably the most widely shared among those who use historical methods. Presentism means distorting the past by seeing it only from the point of view of our own time, rather than using primary sources to understand how other people organized and interpreted their lives. The AIDS epidemic can tempt historians to venture facile analogies with events in the past even though we know better. Many of us have had recent experience of reporters asking us to encapsulate in a sentence or two the history of social responses to epidemics or of scientific communication leading to the discovery of vaccines and cures. Each of the contributors to this book has struggled with the problems of pertinence, without succumbing to presentism, in his or her own way.
Each of the chapters addresses an aspect of the burdens of history during the AIDS epidemic. By "burdens" we simply mean the inescapable significance of events in the past for the present. Some of these events are familiar; others are almost unknown except among specialists. All of them, however, are in some way related to the collective response to the current epidemic, and they all help clarify the complex social and cultural responses to the contemporary crisis of AIDS. All theauthors would agree that social, cultural, and moral values are important in determining how societies respond to disease. Many would also argue that these values are embedded in the biomedical and epidemiological theories of disease itself.
In the first essay, "Disease and Social Order in America: Perceptions and Expectations," Charles E. Rosenberg discusses the social historian's interest in the social construction of disease, in its cultural meanings, and in the power of the medical profession to name and to manage social ills. Rosenberg reflects on the history of the history of medicine and on the optimistic faith in science and medicine shared by a generation of medical historians in the 1930s and 1940s. Social reformers calling for a better distribution of the benefits of medicine did not then doubt the benevolence of medical knowledge itself. By contrast, in the 1960s and 1970s a new generation of historians expressed considerable skepticism about the claims of science and the social authority of physicians. Their critical struggles were fought around the definition of disease.
Rosenberg's essay provides a panoramic view of historical changes in the definition of disease—from sickness conceived in largely individual terms as an imbalance between an organism and its environment, to the idea of each disease as a specific entity, with a specific cause to be discovered by laboratory research. The increasing prestige of the medical profession in the early twentieth century led to the expansion of medical authority and to the redefinition of many forms of deviant or undesirable behavior in medical terms. When the specific disease concept did not lead physicians to deal well with the old and chronically ill, with mental disorders or such problems as alcoholism or obesity, medicine was subjected to an increasing volume of social criticism. In this context, AIDS arrived as a novel and frightening stranger, posing in stark form the questions about the cultural and biological meanings of disease. Rosenberg finds that the AIDS epidemic illustrates both our continuing dependence on medicine and the way in which disease reflects and lays bare every aspect of the culture in which it occurs.
In "Epidemics and History: Ecological Perspectives and Social Responses," Guenter B. Risse uses an ecological model to explore the dynamic relationship between the biosocial environment and the human experience of epidemic diseases. He examines the social context of epidemic disease and the ways in which political and health organizations have historically responded to crises. Risse selects three case studies for analysis: the bubonic plague in Rome in 1656, the cholera epidemic of 1832, and the 1916 poliomyelitis epidemic in New York City.
Risse's account shows how socially marginal groups, ethnic minorities, and the poor have often been held responsible for epidemic diseases: The Jews were blamed for the Black Death in Europe, the Irish were blamed for cholera in New York, and the Italians were accused of introducing polio into Brooklyn. He discusses the frequent infringement of civil liberties in the name of public welfare, from the hanging of violators of public health regulations in seventeenth-century Rome to the travel restrictions and quarantines of children introduced during the twentieth-century polio epidemic. Risse notes that draconian measures of isolation and quarantine generated considerable public panic and distress, while they generally failed to stem the progress of epidemic disease.
Perhaps the most common, and contested, health policy instituted during epidemics has been quarantine of the sick. In "Quarantine and the Problem of AIDS," David F. Musto examines the practice of quarantine in relation to leprosy, yellow fever, cholera, tuberculosis, and drug addiction. He shows that efforts to quarantine large numbers of people have never been successful—despite exorbitant costs and the suspension of individual liberties. Indeed, quarantines have often been both ineffective and cruel—especially in dealing with yellow fever, a viral infection conveyed by mosquitoes, and cholera, a bacterial infection transmitted by contaminated food and water. Musto concludes that quarantines have been more effective as ways of expressing public fears about outsiders or socially disapproved groups than as ways of dealing with or preventing disease. Throughout history, quarantines have thus been a response not only to the diseases themselves but also to popular demands for a boundary between the "kind of people" so diseased and the "respectable people" who hope to remain healthy.
Physicians have been called upon during epidemics to assume public functions as well as to treat particular patients. In "The Politics of Physicians' Responsibility in Epidemics: A Note on History," Daniel M. Fox argues that, although most physicians treated most of the patients who sought their care during epidemics, they frequently did so as the result of negotiations with civic leaders. These negotiations have addressed two issues: which physicians would treat patients in the lowest classes; and what incentives would be offered to physicians to take risks. From the fourteenth century to the present, despite enormous changes in the practice of medicine and the social position of physicians, there has been remarkable continuity in how the profession has responded to the threat of contagion.
An understanding of the need for public education about the prevention of the AIDS epidemic has been notably more evident in Great Britain than in the United States. In "The Enforcement of Health: The British Debate," Dorothy Porter and Roy Porter explore the historical conflicts between individual freedom and the public good in dealing with issues of public health in Britain. Under what circumstances could the state be justified in imposing compulsory measures intended to protect the public health? What restrictions could be placed on the "freedom to be sick, and to spread one's sickness, with impunity"? The authors trace the debates and struggles around these legal, philosophical, and ethical issues over a century and a half of British history, demonstrating the grounds for resistance to compulsory state measures.
In the process, they discuss the debates over public health regulation with respect to lunacy, vaccination, and venereal diseases, and show that when those whose liberties were threatened were least powerful or articulate—such as mental patients—the government was able to enact legislation with little or no opposition. In the cases of compulsory smallpox vaccination, venereal disease, and prostitution, however, proposed legislation collapsed in the face of widespread criticism. Analyzing the battle lines drawn over the compulsory examination of prostitutes, the Porters note the relative weakness of the alliance between the government and the organized medical profession, in addition to the deep division within each regarding the propriety and prudence of the enforcement measures. The authors thus provide a historical context for understanding the contemporary response to AIDS, where the British government, the Department of Health, and the medical profession have all supported mass-educational preventive programs and have generally resisted demands for compulsory screening.
Returning to social and sexual attitudes in the United States, Elizabeth Fee shows in "Sin versus Science: Venereal Disease in Twentieth-Century Baltimore" that the black community was held largely responsible for syphilis and that the recorded syphilis rates seemed to confirm white suspicions about the "unrestrained" sexual behavior of the black population. Syphilis was perceived as a disease of the "guilty," a consequence of immoral, improper, or promiscuous sexuality. Fee argues that health officials in the 1930s mounted a deliberate campaign to present syphilis as a disease of the "innocent," and she traces the historical conflict between the biomedical approach to venereal disease—which viewed it as just another infection by a microorganism—and the moral approach, which perceived disease as the consequence of sin. In Baltimore the biomedical approach was adopted by local public health officials and the U.S. Public Health Service, while the moral crusade was supported by the Social Hygiene Association, some local politicians, and the law enforcement campaign against vice and prostitution led by the Federal Bureau of Investigation (FBI) and J. Edgar Hoover. The two views of disease were never completely separate, however, and Fee's account shows that even the discovery of rapid and successful penicillin treatment failed to quiet concerns about the sexual morality and behavior of the citizenry.
In "AIDS: From Social History to Social Policy," Allan M. Brandt discusses the ways that social responses to venereal diseases have expressed cultural anxieties about contagion, contamination, and sexuality. He describes the early twentieth-century crackdown on prostitutes as "the most concerted attack on civil liberties in the name of public health in American history," observing that the policies of detention and internment actually had no impact on the rates of venereal disease. Brandt urges policymakers to pay careful attention to the history of sexually transmitted diseases before deciding on the health and social policies necessary for dealing with AIDS. He discusses the policy issues involved in voluntary screening and mandatory testing, and in funding research, health services, and sex education. He weighs the complexities involved in trying to change personal behavior patterns and discusses the balancing of individual rights with the public welfare. Brandt argues that any policy proposal must be evaluated according to two criteria: Will it work? and is it the least restrictive of all possible measures?
The cultural imagery of the ill is an important theme in historical accounts examining the social responses of health officials and the general public. The construction of AIDS through popular images and language and the creation of scientific descriptions are examined in three chapters. Daniel M. Fox and Diane Karp describe how artists have represented the impact of infectious diseases, including AIDS, using the conventions of their time and their medium. Two chapters explore the cultural imagery particular to AIDS. Paula A. Treichler applies linguistic analysis to discourse about AIDS as reflected in both popular and scientific literature. Gerald M. Oppenheimer then examines the cultural ideas embedded in epidemiological categories and biomedical research.
In "Images of Plague," Daniel M. Fox and Diane Karp present selected images from an exhibition they recently mounted in New York City. The sixteen prints and photographs they feature here are arrayed to tell two stories. One story is about changing conventions among artists for depicting the effects of physical afflictions that have invisible causes. The other is about the impact on artists of the gradual emergence of the concept of infectious disease. Despite the optimism that the germ theory generated about the control of disease by scientific measures, many artists continued to depict disease as a mysterious and intense personal experience and often as a generalized threat to society.
In "AIDS, Gender, and Biomedical Discourse: Current Contests for Meaning," Paula A. Treichler analyzes the language of AIDS from a feminist point of view. She examines the ways in which medical discourse constructs sex, sexuality, and the human body, arguing that it functions to reinforce entrenched cultural notions about gender. Tracing the early discourse on AIDS, Treichler notes that women were almost invisible, being grouped only as "Other." Women were discussed as "inefficient" or "incompetent" transmitters of an AIDS virus that was more effectively passed between men. Women entered the discussion as special, exotic categories: prostitutes, intravenous-drug-using mothers, Africans. Only with the shift in concern to heterosexual transmission, and the declared threat that the virus might pass to the majority (read white, middle class) population, did the discourse turn to women. Treichler criticizes the reassuring and self-congratulatory tone of magazine articles directed at women, and urges feminists to take a much more active role in articulating the nature and meaning of the AIDS crisis.
Where Treichler concentrates on popular media discourse about AIDS, Gerald M. Oppenheimer turns his attention to scientific studies of the disease. "In the Eye of the Storm: The Epidemiological Construction of AIDS" contrasts the roles played by epidemiologists and virologists in the scientific construction of AIDS. As Oppenheimer notes, the power of the multicausal epidemiological model is its ability to incorporate nonbiological variables. This power introduces the danger of reading social and moral judgments into our scientific models—perhaps best reflected in the frequent use of the term promiscuity in the scientific journals. Oppenheimer traces the early studies of homosexual men; the articulation of the "life-style" hypothesis; the discovery of cases among heterosexual Haitians, hemophiliacs, female partners of intravenous-drug-using men, and their children; and the subsequent search for a biological agent of the disease. He notes that the discovery of the human immunodeficiency virus (HIV) transformed the disease into a problem of virology, one open to chemical resolution in the form of drugs or vaccines. The biological complexities of the virus mean that such solutions will not be easy to achieve. Oppenheimer concludes that, despite thesuccesses of virology, the multicausal epidemiological model still offers the best possibilities for primary prevention.
Despite evidence of heterosexual and nonsexual transmission, early epidemiological studies firmly linked AIDS to homosexuality. In "Legitimation through Disaster: AIDS and the Gay Movement," Dennis Altman poses the paradox of AIDS in relation to the gay movement. Although the epidemic has meant increasing stigmatization of gays, it has also brought a much greater recognition of the homosexual community and has bolstered the emergence of the gay movement as a recognized political pressure group: Gay leaders and organizations have gained prominence through their involvement with AIDS education, counseling, and policy-making. In examining the political impact of AIDS on the gay movements in Australia and the United States, Altman expresses some ambivalence about the increasing dominance of professionals in leadership roles—a marker of the new respectability of gay organizations, which may also moderate the energy of grass-roots activism.
Altman provides a useful analysis of national differences in dealing with the AIDS epidemic. He notes the tension between two kinds of approaches, one focusing on testing and screening efforts, the other on large-scale education and service programs. The emphasis in each country reflects differences in political cultures and ideologies in addition to the strength and degree of political organization of the gay community in each nation. Altman argues that in areas where gay struggles have already carved out a place for them in the political process, gay organizations have made their strongest contributions to health policy.
In the concluding essay, "AIDS and the American Health Polity: The History and Prospects of a Crisis of Authority," Daniel M. Fox uses the response to the AIDS epidemic as a lens through which to view the structure of the American health care system and the health policy process. He argues that when the AIDS epidemic was first recognized in 1981 the American health polity was undergoing a profound crisis of authority. Fox analyzes the shifting emphasis from infectious to chronic diseases, from collective to individual responsibility for health, and from access and equity to cost containment and fiscal restraint. He argues that the growing centralization of authority in the 1940s and 1950s was replaced by fragmentation and localization in the 1970s and 1980s. The decline in federal health authority was then only partially offset by an increased role for the business and private sector, encouraged by the Reagan administration. Fox argues that these events created a health polity that was both leaderless and ill-equipped to address the AIDS epidemic. The epidemic thus highlights the particular weaknesses of American health policy and poses the challenge to create a more unified, more effective collective response to disease.
This book is a beginning effort to take a more historical approach to the AIDS epidemic. While we do not claim to offer direct answers to questions of public policy, we do hope to bring new perspectives to bear on the debate. In emphasizing the contributions of historians, we hope to bring new voices into the discussion of public policy and to share some insights of historians with colleagues, students, and general readers.
The chapters in this book necessarily constitute an incomplete account of the bearing of history on the AIDS epidemic. We left out important subjects either because the scholars who write on them had commitments that prevented them from meeting our deadline, or because we could not identify appropriate contributors. These omissions include the historical context of the epidemic in Africa, Asia, the Caribbean, South America, and continental Europe; the historical epidemiology of infectious disease; and the recent history of research in virology and in the prevention and treatment of infection. We hope that the work presented in this volume will stimulate discussion and further research and that the subjects we were unable to include will soon be addressed by historians who share our interest in the application of their work to contemporary questions of public policy.
Excerpted from AIDS by Elizabeth Fee Copyright © 1991 by Elizabeth Fee. Excerpted by permission.
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|Introduction: The Contemporary Historiography of AIDS||1|
|Pt. I||The Virus and Its Publics|
|AIDS and Beyond: Defining the Rules for Viral Traffic||23|
|Causes, Cases, and Cohorts: The Role of Epidemiology in the Historical Construction of AIDS||49|
|The Mass-Mediated Epidemic: The Politics of AIDS on the Nightly Network News||84|
|Pt. II||Law, Ethics, and Public Policy|
|The Politics of HIV Infection: 1989-1990 as Years of Change||125|
|The AIDS Litigation Project: A National Review of Court and Human Rights Commission Decisions on Discrimination||144|
|The History of Transfusion AIDS: Practice and Policy Alternatives||170|
|Scientific Rigor and Medical Realities: Placebo Trials in Cancer and AIDS Research||194|
|Entering the Second Decade: The Politics of Prevention, the Politics of Neglect||207|
|Pt. III||Affected Populations|
|Until That Last Breath: Women with AIDS||229|
|Riding the Tiger: AIDS and the Gay Community||245|
|The First City: HIV among Intravenous Drug Users in New York City||279|
|Pt. IV||International Perspectives|
|AIDS Policies in the United Kingdom: A Preliminary Analysis||299|
|Foreign Blood and Domestic Politics: The Issue of AIDS in Japan||326|
|Medical Research on AIDS in Africa: A Historical Perspective||346|
|AIDS and HIV Infection in the Third World: A First World Chronicle||377|
|Notes on Contributors||413|