AIDS in a Cultural Context
AIDS makes explicit, as few diseases could, the complex interaction of social, cultural, and biological forces. Given the social history of venereal disease in the United States, this is hardly surprising. But, as disease is shaped by its particular social and historical context, so will the response. Nevertheless, the analogues that AIDS poses to the broader history of sexually transmitted diseases in the United States are striking: the pervasive fear of contagion, concerns about casual transmission, the stigmatization of victims, the conflicts between public health and civil liberties, and the search for magic bullets. How these issues will be resolved as the AIDS epidemic continues to unfold in the years ahead is far from certain.
History is not a predictive science. AIDS is not syphilis, and the historical moment has shifted. But one thing is certain: The response to AIDS, as can already be seen, will not be determined strictly by the disease's biological character; rather, that response will be deeply influenced by our social and cultural understanding of disease and its victims. And, indeed, even our scientific understanding of the disease will be refracted through our cultural values and attitudes. History provides us with a way of understanding and approaching the present. The recognition of the process by which AIDS has been culturally defined provides us with an opportunity to guide and influence responses to the epidemic in ways that will be constructive, effective, and humane.
A series of difficult dilemmas are just offstage. Can we protect the rights of AIDS victims while avoiding the victimization of the public? How will the conflict between individual liberties and public welfare be resolved?[38] In the months and years ahead the problem of constructing cost-benefit ratios for various policies will be confronted. Who will bear the burdens of any particular intervention? What are the potential unintended consequences of any particular policy? Traditional public health policies have been advocated: screening, testing, reporting, con-
tact tracing, isolation, and quarantine. Will these measures be effective in the case of AIDS, which is complicated by the large number of healthy carriers perhaps infectious for life?
There are two criteria by which any proposal must be evaluated. First, effectiveness : There must be considerable evidence that any particular policy offers substantial benefit. The second criterion for public interventions should be justice : Is it the least restrictive of all possible positive measures?
Although we know a good deal about AIDS, much still lies outside current scientific understanding. Policies relating to AIDS will, of course, be created in this atmosphere of uncertainty, complicated by the decline of the authority of scientific experts—from Three Mile Island, to Love Canal, to the space shuttle, to Chernobyl—which has had the effect of creating significant public distrust.[39] Our fortunate inexperience, as a society, with major epidemics (since polio) accounts for our relative lack of social and political savvy in dealing with such problems. In fact, we would probably have to go back to the influenza pandemic of 1918 to identify a pathogen as dangerous as the AIDS virus. That is, we have few models for dealing with public health issues of this magnitude and complexity.
Our notions of cost-benefit analyses and social policy are characterized by a naive belief in policies without costs. All social policies carry certain costs, but in our political culture we tend to reject policies when the costs become explicit, even if they promise significant benefits. This has been seen in two proposals to slow the spread of the infection. As in the early twentieth century, education has been proffered as one of the few strategies capable of slowing the spread of disease. But discussions must assess the meaning and content of such education. Explicit sexual education has been rejected by some officials because it is viewed as encouraging homosexuality; the costs are thus evaluated as too high. Another recent proposal has met a similar fate—the idea of providing sterile needles to intravenous drug users to slow down the rapid spread of the disease among that community. This idea has proved unpopular thus far because it is seen as contributing to the drug problem. Underlying such assessments, of course, is the idea that AIDS is a "self-inflicted" disease.
As was the case in the early twentieth century, public health measures that require dramatic infringements of civil liberties are again being proposed. As we saw in the Porters' chapter on the enforcement of health measures in Britain, such steps have had little if any impact on the public health. In the United States, similar harsh measures have been ineffec-
tive: For example, rates of venereal disease climbed rapidly during World War I, despite radical government measures regarding the incarceration of prostitutes. This is not to suggest the purely pragmatic notion that if an intervention works it is right. Rather, if an intervention does not produce results, and yet is supported by officials and the public, one must look for secondary reasons to explain that support. The issue thus becomes not the desire to protect the public from hazard—an idea so basic to modern governments that few would question it in principle; our most fundamental notions of social welfare are based upon it. Rather, these activities indicate a transformation from protection to punishment; a clear signal that the disease and those who get it are socially disvalued.
In view of the fear and aversion that surround AIDS, there is a clear danger that policies with little or no potential for slowing the epidemic could nevertheless have considerable legal, social, and cultural appeal. What can be done to separate realistic concerns from irrational fears? How can victim-blaming and stigmatization of high-risk, already marginal, groups be avoided? This process of dividing victims into blameless and blameful categories is analogous to early twentieth-century notions of venereal disease insontium, and is evident, for example, in assessments such as the following 1983 article appearing in the New York Times Magazine :
The groups most recently found to be at risk for AIDS present a particularly poignant problem. Innocent bystanders caught in the path of a new disease, they can make no behavioral decisions to minimize their risk: hemophiliacs cannot stop taking bloodclotting medication; surgery patients cannot stop getting transfusions; women cannot control the drug habits of their mates; babies cannot choose their mothers.[40]
This passage illustrates a number of problems. First, it suggests that the disease is somehow more "poignant" when it attacks nonhomosexuals. Second, if these groups are "innocent bystanders," then those at highest risk of contracting AIDS are "guilty." This discussion implies that the entire community is at risk from the sexual practices of homosexuals. In some quarters the misapprehension persists: AIDS is caused by homosexuality, not by a retrovirus. According to this confused logic, the answer to the problem is simple: Repress these behaviors. Implicit in this approach to the problem are powerful assumptions about culpability and guilt.
Indeed, assessments of AIDS—as of most sexually transmitted dis-
eases in the twentieth century—rest on the essentially simplistic view that the problem can be solved if individuals conduct their sexual life more responsibly, a view that rests on the explicit assumption that an individual's behavior is free from external forces—that a "life-style" is strictly voluntary. These persistent assumptions about health-related behavior rest on an essentially naive view of human nature. If anything has become clear in the course of the twentieth century it is that behavior is subject to complex forces, internal psychologies, and external pressures, all of which are not subject to immediate modification or, arguably, to modification at all. Sexuality is subject to a number of powerful influences, social and economic, conscious and unconscious, many more powerful than even the fear of disease and death. In this view, sexuality is equated with other risk-taking behaviors—smoking, drinking, poor eating habits, driving too fast. Individuals can, of course, be held partly accountable for these behaviors, but the questions of to what extent and whether they should be are not as simple.
The persistence of such values and attitudes calls into question the received view of the sexual revolution in whose aftermath we are living. Serious and important changes in sexual mores and practices have undoubtedly taken place—the gay-liberation movement is but one example. But this makes certain continuities all the more striking. Social values continue to define sexually transmitted diseases as uniquely sinful and, indeed, to transform them into evidence of moral decay; some still believe that fear of disease encourages a higher morality. It thus seems naïve and wishful to assert that we have conquered moral puritanism within ourselves, because underlying tensions in American sexual values persist, tensions that are brought forward in our approach to AIDS as well as to venereal diseases. To conservative foes of the sexual revolution, the message is clear: The way to control sexually transmitted disease is not through medical means but through moral rectitude. A disease such as AIDS is controlled by controlling individual conduct.
The final chapter by Daniel Fox demonstrates that one current trend in health care policy is to accept this model of disease and to apply it to a myriad of other illnesses, to reduce the emphasis on social or external determinants of disease and health, and to stress individual responsibility.[41] This model, however, has failed venereal disease, and the historical record renders it a dubious precedent. The presumption nevertheless remains. Behavior—bad behavior at that—is seen as the cause of disease. These assumptions may be powerful psychologically, and in some cases
they may influence behavior, but so long as they are dominant—so long as disease is equated with sin—there can be no "magic bullet."
In this sense the old scare tactics have failed; denial and repression of sexuality have failed; victim-blaming and moralizing have failed as effective public health mechanisms. Although biomedical solutions offer much hope, they, too, have been unable to free us from infectious disease. More creative and sophisticated approaches to this set of diseases are necessary. Behavioral changes may indeed be a significant factor in disease, and new techniques to assist those who seek to change are needed. But we need to recognize that "behavioral change" does not have to mean celibacy, heterosexuality, or morality; rather, it means avoiding contact with a pathogen.
AIDS makes painfully explicit the limits of our ability to intervene against the course of the biological world. Sexual contact is one of a number of ways in which microorganisms are transmitted from human to human. New or altered infectious agents are passed this way; no single medical treatment has proved effective for these infectious organisms. This, then, reveals the fundamental flaw in the biomedical model; that is, the search for magic bullets. Venereal diseases, indeed, all infectious diseases, constitute complex bioecological problems in which host, parasite, and a number of social and environmental forces interact. No single medical or social intervention can thus adequately address the problem. Just as social mores and practices change, so, too, does the biological system. New infections such as AIDS may appear, or older, once-controlled infectious diseases, such as gonorrhea, may become intransigent in the face of agents whose effectiveness is attenuated as the organism itself changes. As one observer recently remarked, the battle against infectious disease is an ongoing "leap-frog war."[42]
Caught in the complex web of social and scientific questions surrounding AIDS, we easily forget the dimensions of the tragedy. While disease tells us much about the nature of our society, it also reveals the nature of illness, suffering, and death and dying. The high mortality associated with AIDS and the growing number of cases could become the justification for drastic measures. "Better safe than sorry" could well become a catch phrase to justify dramatic abuses of basic human rights in the context of an uncertain science. Moreover, the social construction of this disease, its close association in much of the public's eye with violations of the moral code, could contribute to spiraling hysteria and anger. This cycle has already led to further victimization of patients, the double jeopardy of lethal disease and social oppression.
The social costs of ineffective, draconian public health measures would only augment the crisis we know as AIDS. But such measures can be avoided only if we are adept in both our medical and cultural understanding of this disease. For we need to perform a difficult task, that of separating deeply irrational fears from scientific understanding. Only when we recognize the ways in which social and cultural values shape this disease will we be able to begin to deal effectively and humanely with a problem as serious and complex as AIDS.
AIDS is an unfinished chapter in our medical and social history, demonstrating the nature of contemporary biomedical science and research; our beliefs about health, disease, and contagion; and our ideas about sexuality and social responsibility. AIDS demonstrates how economics and politics cannot be separated from disease; indeed, these forces shape our response in powerful ways. In the years ahead we will, no doubt, learn a great deal more about AIDS and how to control it. We will also learn a great deal about the nature of our society from the manner in which we address the disease: AIDS will be a standard by which we may measure not only our medical and scientific skill but also our capacity for justice and compassion.