of one or two hundred rupees. I am a girl of the village and was easily deceived. I got entangled in the threads of the carpet looms. He told me he would take me into another profession. He said “Raxaul,” as it sounded but took me to Bombay. I learned that he had sold me for 12,000 rupees. He pushed me down into living hell.
That didi [sinful woman] uttered sweet words. With smiles she said that my stars would now shine bright, but when I refused, I was beat. Don’t ask me then through what hell I’ve been up till now! I spent nine years in that hell and my life was totally shattered. One day a cold caught me. I found myself with diarrhea and chest pains. One day a doctor came to give me a check-up, the didi gestured and I agreed.
She gave me 2,000 rupees and a train ticket and they sent me home with many incurable diseases. I was not cured and my ailments made me desperate. The blood exam revealed that I have the fatal AIDS.
Alas, my life is reaching an end, and it ends in nothing then. O straight-forward girls of the village, please look at me! Don’t get coaxed in the sweet words of those sinful souls. (Ramesh 1993)
I was once told, “If you want to know the depth of a Nepali’s emotion about a certain experience, ask them to write a song about it.”1 The quote above is a translated stanza from a song written by a Nepali woman about the depth of her experience with life, and ultimately with the disease called AIDS.2 I often found people matter-of-factly telling me their heart-wrenching life stories that broke my heart and left me in a state of emotional disarray and emptiness. It seems that personal emotions are not publicly displayed in Nepali society.
Perhaps, as I assert in the latter part of this book, the responses (mostly unemotional) to their tragic situation is due, at least in part, to their deeply held Vedic worldview of their own anticipated reincarnation. Or perhaps it is due to their underlying attitude of fatalism. Or perhaps, as has been suggested above, it is just their style. Whatever it is, it often perplexed me.
This book is about HIV and AIDS. More specifically, it is about cultural models, particularly the cultural models of HIV and AIDS currently being negotiated in Nepal. It is also about the cognitive illness schemata that underlie and inform these cultural models.3 The way that people make sense of illness is, in part, culturally determined. Existing beliefs and presuppositions shared by a community (cultural knowledge) regarding illness play a significant role in shaping 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
