Birth in the Age of AIDS (Stanford Uni Press, 2013) by Dr. Cecilia Van Hollen, Associate Professor in the Department of Anthropology at the Maxwell School for Citizenship and Public Affairs at Syracuse University is a vivid and poignant portrayal of the experiences of HIV-positive women in India during pregnancy, birth, and motherhood at the beginning of the 21st century. The government of India, together with global health organizations, established an important public health initiative to prevent HIV transmission from mother to child. While this program, which targets poor women attending public maternity hospitals, has improved health outcomes for infants, it has resulted in
Photo credit : Dr. Cecilia Van Hollen
sometimes devastatingly negative consequences for poor, young mothers because these women were being tested for HIV in far greater numbers than their male spouses and were often blamed for bringing this highly stigmatized disease into the family.
Based on ethnographic research conducted by the author in India between 2003 and 2008, this book chronicles the experiences of women from the point of their decisions about whether to accept HIV testing, through their decisions about whether or not to continue with the birth if they test HIV-positive, their birthing experiences in hospitals, decisions and practices surrounding breast-feeding vs. bottle-feeding, and their hopes and fears for the future of their children.
In this short interview, she talks to us about the research, some concerns that came up during her work and offers insights into how women with AIDS cope with their condition.
1. Saraswati’s story in the prologue is very moving. What percentage of women do you think find themselves in such situations? Are there women who find in-laws, husbands who are understanding of their situation?
Cecilia : Yes, of course I met women whose husbands and in-laws were much more sympathetic than was the case for “Saraswati” (all the names are pseudonyms) and I write about many such cases in the book. But I also met women who faced even more stigma and discrimination than Saraswati. I used Saraswati’s case in the prologue because the story of how she came to know of her HIV+ status during pregnancy, how family members and medical practitioners reacted, and how her engagement with one of the positive peoples’ “networks” helped her turn a corner to re-affirm her life, resonated generally with the experiences of the 70 HIV+ women I interviewed.
2. Why did you choose Tamilnadu for the study? (Is it because of the history of AIDS in India) or are there other reasons?
Cecilia : Tamil Nadu has played a unique role in the HIV/AIDS epidemic in India. The first case of AIDS was detected in that state in 1986 and in the early days it had one of the highest HIV prevalence rates in the country. But it was also a pioneer state in terms of governmental and civil society responses to the disease. While much of the rest of the country was in denial that AIDS could become a problem in India, the Tamil Nadu state government and community organizations there began to develop programs for HIV/AIDS prevention and care that later became models for the rest of the country. Tamil Nadu also has one of the highest rates of hospitalized births in the country so it was a key state for the implementation of the government program to prevent HIV transmission from mother-to-child which is the focus of my book. Also, I have spent my entire career doing research on healthcare issues in Tamil Nadu and I speak Tamil so I was familiar with the social, cultural, political, and medical context of the region and could conduct my interviews in Tamil.
3. Based on your work, do you think the acceptance of HIV+ patients is better among middle-class people? You mention that AIDS is related to poverty, in many ways. Can you talk about this dimension a bit?
Cecilia : When you look at the global situation, it is apparent that AIDS has become a disease associated with poverty and India is no exception to this rule. That is why my study focused on low-income communities and on publicly funded government health programs. The middle class in India is certainly not exempt from this disease or from the stigma that surrounds it in the Indian context but that was not something I explored.
4. You speak of serendipity in research. What is the most important finding that you found by accident?
Cecilia : I had originally planned to conduct all of my research in public maternity hospitals which were involved in the government’s Prevention of Parent to Child Transmission (PPTCT) program. Although I was granted permission to work in some such hospitals that were engaged in HIV counseling and testing, the permission to work in the hospitals that were conducting births for HIV+ women took much longer than I had hoped. So, in order to be able to meet HIV+ mothers and learn about their experiences during pregnancy, birth, and the post-partum period, I had to change my plans and began to work more with the community-based networks run by and for HIV+ people, such as the Positive Women’s Network. This turned out to be a blessing in disguise because the interviews conducted with women outside of the hospital walls were always much more relaxed as I was able to meet women in their homes or at their support group meetings several times over the course of my study and this allowed for a kind of rapport and open conversation that was not possible in the hospital setting. In the end, it was the accounts from these interviews that are at the heart of my book.
5. How do INGOs’ impact the discourse around AIDS in India? Is there some ‘cultural hegemony’ that you allude to? To what extent are priorities set by these NGOs’ in tune with the needs of these women?
Cecilia : I would say that the international discourse of “rights” which has been at the core of global AIDS activism has been central to the INGO presence in the field of HIV/AIDS prevention and care in India. Since my work was focused on women, this was articulated by the framework of women’s rights and gender discrimination. This kind of rights-based discourse prevailed in the Positive Women’s Network in part due to the group’s link with UNIFEM. What I observed was that women who were members of this organization found some aspects of this framework to be in sync with their interests and needs and other aspects less so. For example, women were willing to sit through a full-day presentation on the importance of the UN’s Convention on the Elimination of all forms of Discrimination against Women (CEDAW) which they felt was of little direct use to them, because following that, they were provided with free group and individual legal counseling regarding such issues as widows’ inheritance rights which were of paramount concern to them, given the fact that although the average age of the women I met was twenty-eight, 47% were already widows whose husbands had died from AIDS.
6. Do you think the battle against AIDS would shift if people’s attitudes towards the disease shift? Or is it largely an economic issue? Or this is a combination of both?
Cecilia : It is a combination of both. During the time of my research, one of the main battles of the positive people’s networks was to demand that the government provide better access to antiretroviral therapies (ART) rather than only focusing on prevention. They argued correctly that access to treatment was essential for decreasing stigma and increasing prevention because without any guarantee of treatment, there was a disincentive to undergo HIV-testing which was considered important to the prevention programs. During my research, towards the end of 2004, the government did begin to roll-out an ART program and that has continued to the present. The availability of treatment has indeed gone a long way towards reducing (though by no means eliminating) the stigma of the disease over time in India.
7. Did you notice any difference between the patients acceptance, lack thereof based on their religious affiliation (You mention that there were some non-Hindu women) were they treated differently by their families/social networks?
Cecilia : A very large majority of the HIV+ women in my study were Hindus. Only two were Muslims so it is not possible to make any kind of generalizations about those cases. Seventeen of the women interviewed were Christian but sixteen of those women had converted to Christianity from Hinduism as a result of having been put in touch with Christian-based NGOs (especially World Vision) because of their HIV+ diagnosis. Interestingly most of these women were converting independent of their husbands or other family members who remained Hindu. In the book I discuss some of the troubling ways in which these recently converted HIV+ Christian women condemned Hindus for their lack of caring and used their new Christian identity to claim higher moral ground vis-à-vis Hindus in terms of attitudes towards abortion in their decision-making about whether to continue with their pregnancies after their HIV+ diagnosis.
8. What about faith-based NGOs’ and the women’s own religious institutions? How do they treat these women? (World Vision is an international NGO, but I am interested in more local, Indian NGOs’ and church, or temple groups, if any)
Cecilia : Apart from the very visible role of World Vision among the women interviewed, it was remarkable that when I asked women whether and how they found religion and religious organizations helpful to cope with this disease, most of the women said religion had not been a particularly helpful resource to them in this circumstance although they did pray for better health, particularly for the health and well-being of their children. Some even said that having the disease had led to a loss of faith in god. I would not say that this necessarily reflects a lack of support from local religious-based organizations today but it was the general response of the women in my study.
9. In terms of gender norms etc. are there any specific policy recommendations that you would put forward? (both for India and INGOs’)
Cecilia : One of the reasons that policy makers in the Indian government called this program the Prevention of Parent to Child Transmission as opposed to the global appellation of the Prevention of Mother to Child Transmission was that they foresaw the possibility that with this program, which was aimed at HIV counseling and testing for women attending government maternity hospitals, there was the risk that if women were found to be HIV-positive before their husbands, this could lead to gender-based discrimination against these women within their husbands’ families. The use of the term “parent” was intended to draw attention to the important role of fathers and the recommendations were that husband and wife should be counseled and tested at the same time. Unfortunately, at the time of my research, the program was not generally being carried out in that manner and all too predictably, women who tested positive through the program prior to their husbands’ testing, were often blamed for being sexually promiscuous and bringing the disease into the husbands’ families, facing discrimination within the family, including the denial of inheritance rights on the grounds of their promiscuity. So my study suggests that there needs to be greater vigilance in the effort to ensure couples’ counseling and testing. This needs to be done in tandem with a move away from what I call a “target-like” approach to HIV-testing in this program in which counselors felt tremendous pressure to get women to give “consent” to HIV-testing even if the husbands were not present because numerical statistics of “acceptors” for HIV-testing were used to determine counselors’ promotions and, according to some, were also used in decisions regarding continued international funding for these counseling programs. This culture of statistical targets that drives global health programs needs to be addressed at all levels, from the international global health arena of policy and funding, to the central government, to state governments and hospital administrations. These are just two of the many policy recommendations I make in the book.
(The book is available at http://www.sup.org/book.cgi?id=22419)