USAID is observing World AIDS Day this year by celebrating ten years of our HIV and AIDS work under PEPFAR.
Book Review: “Birth in the Age of AIDS: Women, Reproduction and HIV/AIDS in India” by Cecilia Van Hollen
Synopsis:
Birth in the Age of AIDS takes the reader on a very personal journey of the experiences HIV- positive women in Southern India have during pregnancy, delivery and postpartum. Through the lens of an anthropologist, the author explores the socio-cultural dynamics of HIV and AIDS, providing emic (an insider’s) insights into such issues as stigma and discrimination, informed consent for HIV testing, confidentiality, partner disclosure, access to HIV and AIDS services, and reproductive decision-making. Ethnographic methods are used to elicit underlying factors that come into play when HIV-positive women are faced with life altering decisions regarding pregnancy, childbirth and breastfeeding. These factors include blame and shame, gender, authority, religion, poverty, class and caste, sexual norms, kinship and marriage, property inheritance, widowhood and social structure. The book depicts the interconnectedness between cultural norms and beliefs, HIV status, and motherhood and how they play out in many aspects of a HIV-positive woman’s life. Case after case, Van Hollen documents the consequences of being HIV-positive and the effects of being involved in social networks for people living with HIV.
Review:
Van Hollen in her book, Birth in the Age of AIDS vividly brings out the stark realities that women living with HIV face during their reproductive years. During the early years of the epidemic, women had little access to information and services related to HIV and AIDS. They often learned of their status upon the death of their husbands and faced pregnancy as a HIV-positive widow, which in Indian society, results in double stigma and blame from her in-laws. These women had to maneuver through complex social environments, carefully considering the impact of every decision on their family, children, and unborn fetus and on their ability to provide for their children. Each decision was more difficult than the next – whether to get tested, whether to continue or terminate the pregnancy, whether to disclose their status, whose advice to trust, whether to take medicine during the pregnancy, where to deliver the baby to avoid discrimination, and whether to breastfeed. The thoughtfulness and selflessness portrayed by the women who shared their stories is inspiring, and rather than feeling pity (which they despise), the reader feels absolute admiration for their tenacity. Though deeply impoverished, the author demonstrates how women used every resource available to them to survive so that they can be good mothers, including religious conversion and remarriage. This book brings to life the positive empowering results of being engaged in a network of people living with HIV and AIDS, taking women from the shadows of shame to the brightness of dignity. Though the book focuses on case studies from a decade back, the stories of stigma, discrimination, avoidance, and rejection are timeless. Today, many HIV-positive women – as well as men, still face the same types of challenges in their families, within the health care system and in broader society as they traverse the worlds of HIV and maternity care.
Birth in the Age of AIDS provides a new perspective on the history of the international and domestic response to the AIDS epidemic in India from its inception in Tamil Nadu. By meticulously dissecting each case from a variety of perspectives, Van Hollen uncovers layer after layer the patterns that create stigma, exacerbate gender inequalities, undermine women’s decision-making about their own health and treatment, and lead to family discord. The book unfolds for policy-makers, program managers and service providers a profound understand of the complexities that underlie seemingly irrational decisions about what experts know as global best practices and evidence-based interventions. It is not just a matter of taking a pill; we wish it were that simple.
Discussion Questions:
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The book calls into question which is a better practice for the HIV-positive woman – HIV testing using informed consent or the “opt out” approach as a routine part of prenatal care. On the one hand, using an informed consent approach offers the opportunity to provide detailed information on HIV prevention, care and treatment. On the other hand, it takes time and resources of health staff. The U.S. has shifted to the “opt out” approach, which puts the decision about testing in the hands of the medical profession. Should developing countries follow our lead?
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Some of the health care providers in the stories demonstrate that their medical decisions were at times guided by misinformation, personal opinion, and discrimination. Yet, taking health workers away from their health facilities for training and refresher training is both expensive and disruptive of services. What are other ways we can ensure health personnel are up to date on the latest medical information and practice and learn how to treat clients with respect?
- Couple counseling and testing during pregnancy is one approach thought to reduce the blame often put on the woman. What were the experiences of the women who experienced couple counseling and testing? How can we improve the way couple counseling and testing is implemented in societies like those in South India where women are often blamed?
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