AIDS, Culture, and Africa

4. A Theory of Social Proximity: Accounting for Societal-Level Behavior Change

4 A Theory of Social Proximity Accounting for Societal-Level Behavior Change Kate MacIntyre and Carl Kendall Prologue An important man, a vice president of a country, recently died after a long illness, involving multiple hospitalizations in a foreign country. The illness was variously reported through the local and international newspapers as pancreatitis, a heart attack, gout, a chest infection, and an “undisclosed illness .” The vice president actually died of complications from antiretroviral (ARV) therapy. His death was yet another of the many HIV- or AIDS-related deaths that remain unspoken of in public. In the initial announcement of his death, the president did not mention the cause of death, merely that the vice president “had been undergoing treatment” at a London hospital. After his death, the press studiously avoided the topic of the cause of his illness or his death. One newspaper had, however, reported during his illness that his doctor in the London hospital was head of the largest HIV clinic in the country. So, the official word was still silence. Yet everyone from gardeners to taxi drivers to street vegetable-sellers knew the cause of death, just as they know the meaning of the code words and phrases used in newspaper obituaries of the middle-aged. Recall the Hans Christian Andersen story “The Emperor’s New Clothes,” when a small boy points out the naked emperor, and all the people begin to whisper among themselves. The difference in the context of AIDS in much of Africa is that not enough small boys have spoken out loud yet, so the crowd keeps quiet. The emperor and his chamberlains continue to walk “as if they carried the train [of his clothes] which did not exist.” 58 Kate Macintyre and Carl Kendall Introduction For two decades, researchers have struggled to understand behavior change in the context of AIDS. Theories abound at the level of the individual, but many theories now take into account environmental and structural variables (Parker et al. 2000). However, neither the theories nor the evaluations of these programs have been able to account for the timing of sweeping changes of behavior that occurred, for example, in San Francisco in the mid-1980s, or in Uganda in the late 1980s and early 1990s. None of these theories has attempted to account for the lack of behavior change in communities that are suffering very high levels of disease or death, even when much about the epidemic, including pathways of transmission, are well known and traditional concepts of contagion well established (Green 1999). The urgency from a public health standpoint is obvious: if we can bring communities and whole societies to the point of making these changes, then HIV rates would plummet. Theories relating how the proximity of the epidemic accounts for behavior change are not new. However, these theories have tended to focus on the sense of the proximity of the epidemic when an individual knows someone with HIV or AIDS (Macintyre et al. 2001). But in societies such as Lesotho, where 40 percent of women attending antenatal clinics are seropositive and deaths from AIDS-related illnesses are everywhere, mechanisms of denial still serve to protect individuals and families from recognition of personal risk. For this reason, we posit that underlying the success or failure of specific projects is a social and cultural explanation that enables or inhibits behavior change. This explanation we have labeled “social proximity.” With social proximity comes a change in the perception of communal as well as personal risk, which triggers a cascade of important changes in behaviors. Social proximity is shaped by a range of influences: the state of the epidemic , history, culture, political economy, institutions, and projects, as well as by individual experience. None of these influences is determinative. The main purpose of this chapter is to define the social proximity of HIV and AIDS, and to begin to hypothesize how this phenomenon may be operating at multiple levels or dimensions to influence behavior change. Proximity is a contextual variable—an underlying topographical reality— that, like a rubber sheet, can be stretched or squeezed to shape the experience of the multiple epidemics that constitute HIV/AIDS. When proximity, or nearness, to the epidemic is high, it creates increasingly transformative experiences, threatening the survival of both individuals and communities. 59 A Theory of Social Proximity: Accounting for Societal-Level Behavior Change When it is low, it permits denial, stigma, and other mechanisms...