Ensnared by AIDS. David K. Beine

an understanding of newly emerging illnesses in any given culture. This cultural knowledge is organized as cultural models, which are utilized to “make meaning” of new situations such as the HIV and AIDS epidemic. These cultural constructions (cultural models) of illness can also contribute to the spread of the epidemic. HIV and AIDS is a relatively new and rapidly growing problem in Nepal. Little is known about how the populace of Nepal understands the illness, locally known only as AIDS rog4, or about the process taking place to develop a cultural model of HIV and AIDS.

      This research, utilizing a cognitive anthropological approach in tandem with a discourse analysis approach, focuses on the meaning of HIV and AIDS in Nepal. The results may have practical application for HIV and AIDS prevention programs in Nepal as well as theoretical implications by testing the cross-linguistic validity of the narrative analysis model. It may also be theoretically important for providing a better understanding of how people incorporate new ideas into their established cognitive systems.

      The title for this book, Ensnared by AIDS, comes from the mouths of many of the informants. The Nepali word phasnu, used by many to describe their condition, carries with it the meaning of being ensnared like a bird in a hunting net. For instance, Prabita, lamenting the discovery of her HIV status, told me, “Now I, a free and innocent girl, am ensnared.” Rajina, regretting how she was tricked into marriage and sold into prostitution by a deceitful man, claimed, “He ensnared me, showing me many hollow things.” And Hari, saddened by his fatal condition, said, “I just know that I am ensnared and will probably die.”

      Because the research was conducted using the Nepali language, I use Nepali words extensively throughout this book. Since these words may be new to many readers, I provide a glossary of the Nepali terms used. I also include the English meanings in single quotes next to the Nepali word the first time the word is used in each new chapter, as a reminder.

      The conclusions of chapter six (a narrative discourse analysis) are drawn from thousands of pages of translated materials. My original notes include (1) a transcription of each of the thirty stories (in the Nepali Devanagri script), (2) a word-for-word English translation below each Nepali sentence, and (3) a free translation rendering it more understandable to mother tongue English speakers. Because the database for this project was so extensive, I have included only the English free translations for each text. Although including these texts in this book necessitates many extra pages, I feel that it is important to hear the voices of those struggling with AIDS in Nepal. After all, this book is ultimately about them and for them.

      This book is about AIDS in Nepal. In the end, however, it is really about people. There are many faces of the AIDS epidemic in Nepal, but behind these faces are real people. Many of the storytellers in this book will be dead by the time these words are finally read. Many of them are men and women like you and me, who over the course of this research became good friends. It is my hope that this book will honor them and that it will, in some way, contribute to a lessening of the future personal tragedies of others in the tiny Himalayan nation of Nepal.

Background

      Although the current reported number of HIV cases in Nepal is relatively small (just under 21,000) it is widely accepted that a much larger problem lies hidden under these official statistics. Traditionally researchers have focused upon the structural epidemiology of the illness (Mann 1992; Sabatier 1988; Sabatier 1989; Shannon et al. 1991) tracing the spread of AIDS worldwide along trucking routes and through high-risk communities such as commercial sex workers. Researchers once predicted that many of these same structural factors would become major determinants in the development of AIDS in Nepal (Seddon 1995; Suvedi et al. 1994). And in fact, structural factors have played a significant role in the spread of HIV, particularly among high-risk communities in Nepal.

      Recently, scholars have begun to focus more attention on the social epidemiology of AIDS (Farmer 1992, Feldman and Johnson 1990; Fleming et al. 1988; Herdt and Lindenbaum 1992; Muir 1991; Schoepf 1990). Several authors (Brown 1993; Green 1992; Taylor 1990) have pushed us beyond the structural epidemiological explanations by adequately demonstrating that cultural beliefs can also be a critical factor in the spread of AIDS. People’s perceptions about AIDS have been found to be crucial factors associated with its spread (Caprara 1993; Shah 1991). These perceptions of the illness, or the “meaning” of AIDS, are socially constructed (Herzlich 1989; Sontag 1988; Treichler 1992) by members of a society and are then developed into a cultural model (Farmer 1994), which is subsequently reinforced by society.

      Although some work has been done on HIV and AIDS in Nepal, no one has examined the cultural models and underlying illness schemata that are being used to make sense of HIV and AIDS. This book brings together the results of two major studies designed to identify shared perceptions regarding HIV and AIDS as well as underlying illness schemata that inform these cultural models.

      The studies, utilizing traditional ethnoscience methods in tandem with discourse analysis methods, were conducted over a sixteen-month period between January 1998 and May 1999. The primary research sites were the small rural village of Saano Dumre in Gorkha District, and various non-governmental organizations (NGOs) in and around the capital city of Kathmandu. More specific details about the sites, the people interviewed, and the research contexts will be discussed in the following chapters. The use of multiple methods provides a more complete picture of the cultural model of AIDS in Nepal, accurately reflecting the cognitive categories arrived at through cognitive anthropological methods, while better reflecting the multivocalic diversity present in any culturally constructed meaning.

      The studies will reveal that there are, indeed, cultural models of HIV and AIDS in Nepal. We will see several cultural models being expressed by various communities in Nepal, but we will also see the emergence of a dominant cultural model of AIDS formed through the weaving together of Western models and schemata with traditional Nepali cultural models of illness and traditional illness schemata. An understanding of these models is crucial as it is these cultural models that people are employing to make sense of AIDS and it is these same cultural models that people use to determine appropriate behavior to exhibit toward those who have HIV and AIDS. And a cursory re-examination of some of these same factors ten years after the first edition of this book was published will reveal that some elements of the cultural model are slowly shifting while others remain the same.

      The purpose of this book is to examine the HIV and AIDS situation in Nepal in depth. Although a thorough coverage of the subject necessitates an investigation of the structural factors contributing to the spread of the disease, I will focus primarily on the social side of AIDS in Nepal—in particular, upon the newly emerging cultural models of AIDS and their underlying illness schemata.

Format of the book

      This book is divided into four main parts: (1) “Background and theoretical underpinnings,” (2) “The projects,” (3) “The findings,” and (4) “In their own words.” These parts are described below.

Background and theoretical underpinnings

      The purpose of part one is to (1) introduce the reader to Nepal (the context in which this study takes place), (2) explore in general the concept of AIDS as both fact and social construction, (3) examine in particular the current AIDS situation in Nepal, (4) introduce the theoretical concepts of cultural models and illness schemata, and (5) introduce the cognitive methodology on which the findings of this book are based.

      In chapter one, I briefly introduce the country of Nepal. Many of the facts about her history, economy, educational system and religion have played an important part in fostering the current AIDS situation. Many of these same cultural features have also been influential in the production of cultural models that I will discuss at length in subsequent chapters.

      In chapter two, I look at AIDS in particular. AIDS is a biomedical fact. It is also a socially constructed disease. In addition, other factors are making it a socioeconomic disease. The result of the mixing of biomedical fact and social construction is that different meanings are attributed to AIDS from culture to culture. The resultant cultural models are also malleable as the nature of the disease (the biomedical facts) itself changes, or as our socially determined understanding of the disease changes.

      In chapter three, I discuss the current