Ensnared by AIDS. David K. Beine
Nepal
5.1 Background and methodology
5.2 Ideas about illness
5.3 Perceptions about HIV and AIDS
5.4 Conclusion
6 : HIV and Me—A Discourse Analysis of HIV and AIDS Narratives
6.1 Methodology
6.2 The findings
6.3 Chapter conclusions
7 : Nepali Cultural Models of HIV and AIDS and Underlying Illness Schemata
7.1 Nepali cultural models of HIV and AIDS
7.2 Underlying illness schemata
7.3 Implications of later research
8 : The Making of a Cultural Model
8.1 The role of NGOs
8.2 The role of doctors and policy makers
8.3 The role of the media
8.4 A comparison of cultural models—implications of underlying biological schemata
9 : Conclusions
9.1 Review of the findings
9.2 Implications of the research
9.3 Final issues
Part Four : In Their Own Words
10.1 Sita
10.2 Prabita
10.3 Raju
10.4 Indra
10.5 Akash
10.6 Gopal
10.7 Shoba
10.8 Thuli
10.9 Hari
10.10 Ramesh
Appendix: Focus Group Interview Questionnaire
Glossary of Nepali Terms
References
Preface to the Second Edition
Much has changed in the world of HIV and AIDS over the past ten years. From the medical side, treatments and preventative measures have emerged that have changed the face of the disease. And these changes have not been without effect upon Nepal. Having said that, history and culture, which were impacting the trajectory and form of the epidemic in Nepal ten years ago, continue to do so. In this second edition I update the medical changes worldwide and in Nepal; address the demographic, historical, cultural and political changes (or lack thereof) which continue to impact prevention and treatment programs; and present an update on the current epidemiological situation. And it will be obvious that culture, at least in the context of Nepal, still matters.
The astute reader will notice that the subtext of the book has changed slightly in this second edition. In the earlier edition the title combined the acronyms HIV and AIDS into a single unit (HIV/AIDS). This was convention at that time. Today these two terms are more often separated into two terms, HIV and AIDS, in order to purposively distinguish HIV, the virus that causes AIDS—from AIDS, the dreaded deadly disease caused by untreated HIV. This is often done to disassociate HIV (which is now treatable) from AIDS, which often carries a strong stigma, in part because of is fatal nature. This change in terminology is reflective of the changing cultural model of HIV and AIDS in the West where we have gone from “dying of AIDS” (the old cultural model) to “living with HIV” (the new cultural model). The title of this book, therefore, reflects this wider understanding of HIV and AIDS, even though this is still far from being a reality for many HIV sufferers in Nepal, as we will see later in this book. Likewise, I have attempted to change this convention wherever possible throughout the second edition, retaining the earlier convention only in the case of quotations or where using the latter convention might cause confusion.
Along with great changes in the world over the past ten years, cultural models of HIV and AIDS have begun to shift slightly in Nepal, while at the same time many elements of the earlier model are perpetuated and reinforced. The danger of books is that they can lock our understanding of any phenomenon into the “ethnographic present.” In this second edition I will not only elucidate the earlier model of HIV and AIDS in Nepal, but I will also cursorily comment on the changes I have noticed, both in the national narratives (via media, INGOs, NGOs and doctors) and personal narratives of those living with HIV. It would require a whole volume based on careful research (another forthcoming book I am working on) to fully elucidate the changing cultural model and its constituent components. And finally, in this second edition, I reflect on the remaining problems in the “fight” (to employ a western illness schema) against HIV and AIDS in Nepal.
Preface to the First Edition
He deceived me. He persuaded me, promising to take me to a glittering town. He deceived me, promising to take me on a running motor car. He promised to employ me in the carpet industry and then told me to be happy with an income 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