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Books

Cecilia Van Hollen’s Birth in the Age of AIDS

Birth in the Age of AIDS: Women, Reproduction, and HIV/AIDS in India

By Cecilia Van Hollen

Stanford University Press, 2013. 274 pp.

 

Cecilia Van Hollen’s latest book, Birth in the Age of AIDS: Women, Reproduction, and HIV/AIDS in India, provides a nuanced, readable, and extremely compelling exploration of the lived experiences of women enrolled in prevention of parent to child transmission (PPTCT) programs in Tamil Nadu, India in the first decade of the 21st century. Drawing on interviews with women living with HIV/AIDS, pregnant women receiving prenatal care but not known to be HIV-positive, and a wide array of HIV/AIDS policy experts, NGO workers and directors, doctors and counselors, lawyers, and government officials, Van Hollen describes the experiences and perspectives of these women as they navigate the fraught landscape of testing and diagnosis, and their subsequent decisions regarding disclosure, pregnancy, labor, and breastfeeding.

Van Hollen’s work responds to a need for studies that examine the ways that national and international HIV/AIDS programming and activism impact and are shaped by local realities. Although the experiences of these women are presented as discreet and individual, Van Hollen also attends to them as “the local embodiment of world history” (8). She explores not only the ways in which these experiences are affected by a particular social landscape, but also how the responses to the epidemic are themselves transforming that landscape. Drawing upon research in Tamil Nadu stretching from 2002 to 2008 (with the bulk done in 2004), she maps out the ways in which treatment and prevention programs in Tamil Nadu (as well as, to a lesser extent, the rest of India), have shifted throughout this period, and, therefore, the ways in which consequences of these programs, intended and unintended, have also changed. To add to the depth of this study, Van Hollen also uses her earlier research on birth and reproduction in Tamil Nadu (2003), to consider the ways in which the birthing experience is changed by a positive HIV diagnosis.

After the Introduction, the second chapter lays out a general history of the HIV/AIDS epidemic in India, with a specific focus on Tamil Nadu, as the state in India with perhaps the most extensive and liberal response to the epidemic. Since the mid-1990s, Chennai, the capital of Tamil Nadu and one of Van Hollen’s three field sites, has emerged as a center for AIDS-related activism. She briefly touches on several of the reasons why Tamil Nadu has been at the forefront of HIV activism and response, and the specific history of the PPTCT program.

The following seven chapters use life histories and extended quotes from interviews to explore the lived experiences of Van Hollen’s interlocutors. Chapters Three and Four deal with conversations about testing, decisions to take the HIV test or not, and whether or not to involve one’s husband in that decision. Chapter Four also explores the complicated ethics of informed consent, and the many ways in which their application varies given social and material realities. The book then moves into five chapters that deal exclusively with the experiences of women living with HIV/AIDS. Chapter Five explores how these women experience and deal with stigma. Stigma is, in India as in much of the rest of the world, a defining characteristic of the experiences of many people living with HIV/AIDS. This book focuses on the many intertwining hardships experienced by these women, which are sometimes exacerbated by the very programs that aim to reduce the incidence of HIV. Given India’s relatively conservative societal norms around sex, particularly pre- or extra-marital sex, coupled with gender discrimination, and the stigma of widowhood in India, these women are saddled with a sometimes seemingly staggering level of discrimination. With a great nuance and attention to variety, Van Hollen explores the individual experiences of stigma and blame, and, importantly, the ways that these experiences vary in different spaces and given different circumstances and how they are negotiated, resisted, and conceptualized. For instance, she compares and contrasts the blame that these women face in their families, especially at the homes of their in-laws, where they are often blamed for infecting their husbands (in part because, through these PPTCT programs, women are frequently diagnosed before their husbands, or at least before their husbands’ status is disclosed). However, in public women are often pitied (as the presumed wives, or widows, of unfaithful husbands), a reaction which they also often resist, not wanting to be the recipients of pity any more than blame.

In Chapter Six, Van Hollen provides insight into the very complicated ways in which the women with whom she spoke reacted to their diagnoses, how such a diagnosis changes their ideas about the pregnancy, and how and why they consider the option to abort. Most dismissed the option of abortion for a variety of reasons including that they thought or were told that their pregnancy was too far along to abort. They also cited pressure from Christian aid organizations, and the discourse of positive living in many secular HIV support groups as additional reasons for choosing to continue with the pregnancy.

Chapter Seven examines the process of labor itself, what kind of prenatal care is sought, and the various and complex influences of social and kin relations as women navigate these decisions, as well those concerning whether to disclose their status to relations, friends, and medical caregivers. On top of the significant factor of stigma around HIV in medical settings (many women report being turned away from hospitals once their status became known, or having to deliver alone with little support as nurses and orderlies refused to change IVs and provide care for women they knew to be HIV-positive), Van Hollen also argues that many healthcare institutions, especially public institutions, suffer from serious material concerns, and may have inadequate and insufficient supplies to provide safe care to HIV-positive individuals.

In Chapter Eight, Van Hollen explores the fraught decision-making processes around breast- and/or bottle-feeding, arguing that for many women, aside from the significant economic hardship of purchasing formula or milk for their infants, deciding not to breast-feed is an extremely difficult decision in a society where mother’s milk is seen as a deeply profound medium for the transmission of both the mother’s love and of Tamil identity itself to the child. In her final chapter, Van Hollen discusses the ways in which these women are agitating for their own rights, and the rights and hopes of their children. Here she argues that HIV/AIDS activism has opened up a space in which prevailing norms, gender roles, and discrimination are challenged, not just for HIV-positive individuals, but more broadly as well.

Van Hollen builds upon the theories of therapeutic citizenship (Nguyen 2010) and patient citizenship (Biehl 2007); she also considers the ways in which a transnational discourse of positive living can be seen as a form of neoliberal self-care (the Indian government, since liberalization in 1991, has turned more and more away from service provision and now, as Van Hollen tells us, spends less than 1% of its GDP on health care). However, she also points out that HIV-positive individuals and their organizations are at the forefront of a fight to demand rights and services from the government. This kind of therapeutic citizenship, in fact, grants them a platform from which to lobby the government for their rights as citizens, which in turn may transform, or open up space for broader appeals on behalf of women’s rights. Yet, she also argues that these appeals are increasingly made to, or fulfilled by, national and international NGOs rather than the state. Not only that, but, as Van Hollen explains, one of the institutions at which women receive extremely good (free) prenatal and PPTCT care, is funded by the NIH and several pharmaceutical companies. The women receiving care there are in fact all participants in a drug trial. Aside from the obvious questions about ethics and consent when, for many of these women, it is a choice between either being part of a drug trial or receiving significantly worse or no care, her study contributes to the growing body of literature on the “bioavailability” of women’s bodies, especially poor women’s bodies, for exploitation in an era of global capitalism (Cohen 2005).

Throughout the book Van Hollen manages to hold two seemingly opposed ideas together: the sometimes extreme constraints to which these women are subjected as a result of multiple and overlapping stigma and discrimination, and their expressions of agency within and through these very structures. Contributing to feminist anthropology on various expressions of agency within structural constraints, she extends Margaret Lock and Patricia Kaufert’s (1998) ideas about ambivalence coupled with pragmatism to explore and explain these women’s engagement with the medicalization of their pregnancies. This book is an excellent and very accessible example of the ethnography of HIV/AIDS, and will be of interest to scholars and students of medical anthropology, global health, feminist anthropology, and India.

 

Lily Shapiro is a graduate student in Sociocultural Anthropology at the University of Washington, Seattle with a focus on medical anthropology and South Asian Studies. Her research concerns factory accidents and reconstructive plastic surgery in South India; through this lens she is interested in exploring the body, occupational health, labor, and the globalization of medical expertise and technologies. She is also a contributor to Somatosphere’s monthly Web Roundup series.

 

Biehl, João. 2007. Will to Live: AIDS Therapies and the Politics of Survival. Princeton, NJ: Princeton University Press.

Cohen. 2005. “Operability, Bioavailability, and Exception.” In Aihwa Ong and Stephen Collier, eds., Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems, 79-90. Malden, MA: Blackwell.

Lock, Margaret and Patricia Kaufert. 1998. “Introduction.” In Margaret Lock and Patricia Kaufert, eds., Pragmatic Women and Body Politics, 1-27. Cambridge, UK: Cambridge University Press.

Nguyen, Vinh-Kim. 2010. The Republic of Therapy: Triage and Sovereignty in West Africa’s Time of AIDS. Durham, NC: Duke University Press.

Van Hollen, Cecilia. 2003. Birth on the Threshold: Childbirth and Modernity in South India. Berkeley, CA: University of California Press.


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