Conclusion: The Social Construction of AIDS

It is into this world that AIDS arrived—almost as novel and frightening a stranger as cholera a century and a half ago. We were not entirely prepared. Antibiotics had removed much of the fear traditionally associated with acute infectious ills. Most laypersons have come to assume that such afflictions had succumbed to the laboratory's insights. Children no longer died of diphtheria; plague and cholera no longer killed masses of men and women. Tuberculosis, too, had declined, along with typhoid and other water-borne diseases. Penicillin had robbed syphilis of much of the fear that had so long surrounded it.^[20] The age of great and intractable epidemics seemed to have passed, and most laypersons assume—whether accurately or not—that medical therapeutics deserved the credit.

But AIDS is both mortal and intractable. It provokes memories of the

fear that helped create cautionary and reassuring explanations for plague or cholera in earlier centuries. An ailment that combines sexual transmission with a terrifyingly high mortality, AIDS was bound to attract extraordinary social concern (in clear contrast with a more shallow and transitory social response to herpes; despite the media attention showered abruptly on herpes, it could not mobilize the same level of social concern). It reminds us of the way society has always framed illness, finding reasons to exempt and reassure in its agreed-upon etiologies. But it also reminds us that biological mechanisms define and constrain social response. Ironically, this new disease reflects both elements—the biological and cultural—in particularly stark form. Only the sophisticated tools of modern virology and immunology have allowed it to be defined as a clinical entity; yet its presumed mode of transmission and extraordinary fatality levels have mobilized deeply felt social attitudes that relate only tangentially to the virologist's understanding of the syndrome. If diseases can be seen as occupying points along a spectrum, ranging from those most firmly based in a verifiable pathological mechanism, to those, like hysteria or alcoholism, with no well-understood mechanism but with a highly charged social profile—then AIDS occupies a place at both ends of that spectrum.

The social response to AIDS also reminds us that we live in a fragmented society. To a substantial minority of Americans, the meaning of AIDS is reflected in, but transcends, its assumed mode of transmission. It was, that is, a deserved punishment for the sexual transgressor; the unchecked growth of deviance was a symptom of a more fundamental social disorder. "Where did these germs come from?" a writer to an urban newspaper asked in the fall of 1985. "After all this time, why did they show up now? . . . God is telling us to halt our promiscuity. God makes the germs, and he also makes the cures. He will let us find the cure when we straighten out." It is significant that this same correspondent felt compelled to add that he was not "a religious fanatic,"^[21] for the great majority of Americans accept the authority of medicine and the reality of its agreed-upon knowledge. They look to the National Institutes of Health, not to the Bible, for ultimate deliverance from AIDS.

The meaning of scientific knowledge is determined by its consumers. When certain immunologists suggest that predisposition to AIDS may grow out of successive onslaughts on the immune system, it may or may not prove to be an accurate description of the natural world. But to many ordinary Americans (and perhaps a good many medical scientists as well) the meaning of such a hypothesis lies in another frame of refer-

ence. As was the case with cholera a century and a half before, the emphasis on repeated infections explains how a person with AIDS had "predisposed" him or herself. The meaning lies in behavior uncontrolled. When an epidemiologist notes that the incidence of AIDS correlates with numbers of sexual contacts, he may be speaking in terms of likelihoods; to many of his fellow Americans he is speaking of guilt and deserved punishment.

Of course, it was to have been expected that patients who contracted AIDS through blood transfusions or in utero are casually referred to in news reports as innocent or accidental victims of a nemesis both morally and epidemiologically appropriate to a rather different group. The very concept of infection is and always has been highly charged; enlightened physicians have always found it difficult to make laypersons accept their reassurances that particular epidemic ills might not be infectious. The fear of contamination far antedates the germ theory—which in some ways only provided a mechanism to justify these ancient fears in modern terms. It is hardly surprising that many remain unconvinced by authoritative medical assurances that AIDS is not (or is not very) contagious.^[22]

Knowledge needs to be understood within highly specific contexts. And the specific content of that knowledge itself needs to be seen as a social variable. AIDS underlines the inadequacy of an approach to understanding and controlling disease that ends at the laboratory's door. But it also emphasizes the parallel inadequacy of disregarding the specific biological character of an ailment—and the status of our understanding of that character.

Our experience with AIDS emphasizes this commonsense point. As our knowledge of the syndrome changes, so do choices and perceptions. Aspects of our culture as diverse as insurance, civil rights, education, and policy toward drug addiction have all been illuminated by our increasingly circumstantial knowledge of AIDS as a biological phenomenon. Knowledge may be provisional, but its successive revisions are no less important for that. With each revision, the structure of choices for individuals and society changes. Without a serological test for exposure to AIDS, for example, there would be no debate about screening, access to insurance, and civil rights (not to mention the dilemma of millions of individuals who seek to define their own risks and predict an unpredictable future).

There are some morals here. Perhaps we cannot return to the optimistic faith so general in the 1930s and 1940s; we are too much aware

of the costs. But we can share the fundamental understanding of the need to study the interactions between society and medicine if we are to bring the benefits of medicine to the greatest number. We are products of what might be termed a generational dialectic. Most students of the social aspects and applications of medicine cannot easily return to the optimistic faith of the 1940s. But our very wariness, our need to place medical knowledge in a cost-benefit as well as cultural context, underlines an important agenda for social medicine. If the recognition of disease implies both a phenomenon and its social perception, it also involves policy. And that policy inevitably reflects phenomenon and perception. If an ailment is socially defined as real, and nothing is done, then that, too, is a policy decision. This process of interaction between phenomenon, perception, and policy is important not only to medicine but also to social science generally. The brief history of AIDS illustrates both our continuing dependence on medicine—for better or worse—and the way that disease necessarily reflects and lays bare every aspect of the culture in which it occurs.