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Published in final edited form as:
Crit Public Health 2014 ; 24(4): 445-460 doi: 10.1080/0958 1596.2013.846464
Obstacles to the ‘cleanliness of our race’: HIV, reproductive risk, stratified reproduction, and population quality in Hanoi, Vietnam
Harriet M Phinney, PhD, MPH [Assistant Professor],
Department of Anthropology, Sociology, and Social Work, Seattle University, Seattle, WA USA, phinneyh@seattleu.edu, 206.370.2132
Khuat Thu Hong, PhD [Co-Director],
Institute for Social Development Studies, Address: Suite 225; Entry 11; Block CT5; Song Da - My Dinh area; Pham Hung road; Ha Noi, Vietnam, hongisds@ gmail.com, 84-4-3782-0058
Vu Thi Thanh Nhan [Researcher cum Data & Resource Center Manager],
Resource Center for Gender, Sexuality and Reproductive Health, Institute for Social Development Studies, Ha Noi, Vietnam, thanhnhan @isds.org.vn, 84-4-3782-0058
Nguyen Thi Phuong Thao, MA, and
Head of Data Management Department, Research and Training Department, Institute for Social Development Studies, Ha Noi, Vietnam, nguyenthao @isds.org.vn, 84-4-3782-0058
Jennifer S Hirsch, PhD [Professor]
Deputy Chair for Doctoral Studies, Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University, New York, NY USA, jsh2124@columbia.edu, 212-305-1185
Abstract
This paper focuses on the interactions between medical professionals in Hanoi, Vietnam and their HIV-positive patients who desire children Drawing on ethnographic research, we argue that despite ongoing state and civil society efforts to reduce discrimination against people living with HIV (PLHIV), doctors do stigmatize patients who choose to reproduce, even if the patients are found to have carefully considered all associated risks While the effects of the Social Evils Campaign linger, the doctors’ prejudicial stance towards PLHIV’s reproductive desires and risks also reflects the messages communicated by the more recent governmental campaign on
Trang 21dJ12snuei 1ouny VdI-HIN 1dJ1osnueI 1ouiny Vd-HIN 1d4osnuejN 1ouny Vd-HIN Introduction
Speaking at the 10th Anniversary of the National Committee for AIDS, Drugs and
Prostitution Prevention and Control in 2010, Eamonn Murphy from the UNAIDS praised the accomplishments of the Vietnamese National Committee for AIDS, Drugs and Prostitution Prevention and Control He called for an end to stigma and discrimination and in his closing remarks reiterated Ho Chi Minh’s call for all Vietnamese to recognize their duty to protect, defend, and sacrifice for the nation (UNAIDS 2008) The significance of Murphy’s allusion to Ho Chi Minh’s revolutionary call lies in the contradiction it presents to medical
professionals struggling to balance the individual reproductive needs and desires of their HIV-positive patients with the call to protect the nation As Richey points out,
‘Reproductive decision making in the context of the AIDS clinic reignites classic debates over rights of the individual versus rights of the community, the meaning of motherhood and maternal identity ’ (2011, 69) In the ‘politicized space’ (Richey 2011) of the Hanoi clinic, while the reproductive rights and desires of people living with HIV (PLHIV) are recognized, their decisions to bear children are considered ill-informed and ultimately contrary to the public good as defined by national efforts to raise the quality of the Vietnamese population As a result, PLHIV’s decisions to risk childbearing are simultaneously tolerated and disparaged
This paper explores both the tensions that characterize the relationship between doctors and their HIV positive patients who desire children and the process through which the
reproductive futures of PLHIV who are on ARTs are configured as less valuable — perhaps even detrimental to the well-being of the national body — than those of people without HIV Three primary discourses shape these interactions: the cultural discourse on the value of children, the medical discourse on the risks of PLHIV bearing children, and the national discourse on improving the quality of the Vietnamese population
Reproductive Stigma and Stratified Reproduction
Recognizing stigma and discrimination as a social (Parker and Aggleton 2003) rather than simply an individual process (Goffman 1963), our research builds on existing studies that discuss the cultural and familial context of HIV-positive women’s experiences of pregnancy and childbirth (Brickley et al 2009; Nguyen Thu Anh et al 2008; Oosterhoff 2008) We draw on two key conceptual sources: Link and Phelan’s (2001) analysis of the ways in which stigma and discrimination result in social stratification and Colen’s (1995) concept of ‘stratified reproduction’ , which calls attention to how social inequality is reflected by and reproduced through the differential valuation of children We show how stratified reproduction is one of the processes through which HIV stigma is constituted, articulating the connection between HIV stigma in general and the perceptions that PLHIV cannot be good parents, are endangering their partners and/or offspring, burden communities by their ‘selfish’ choices to reproduce, and do not ‘deserve’ to have children This connection between the differential valuation of reproduction and HIV stigma is evident in other parts of the world (Ingram and Hutchison 2000; Myer 2005; Paiva et al 2003)
Substantial research has described how the Vietnamese government's Social Evils Campaign! created and reproduced stigma and discrimination of PLHIV (Brickley et al
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Phinney et al Page 3
2009; ISDS and CSAGA 2008; Khuat Thi Hai Oanh 2007; Khuat Thu Hong et al 2004; McNally 2007; Oosterhoff 2008; Van Dat 2009;) Despite ongoing efforts to ‘delink’ the association between HIV/AIDS and the ‘social evils’ of prostitution and intravenous drug use, PLHIV are still considered immoral by many Vietnamese
However, while the legacy of the Social Evils Campaign continues to lurk in the minds of medical professionals, the more recent 2001 governmental strategic population campaign of ‘Population Quality’ (Chế Lượng Dân SỐ has further exacerbated the stigmatizing and discriminatory language doctors use to describe PLHIV who decide to risk bearing children The end result is a reproductive stratification of the Vietnamese citizenry, with PLHIV’s decisions to reproduce considered obstacles to national efforts to create a ‘quality population’, or as one medical professional stated, as obstacles to ‘the cleanliness of our race’ (sạch sẽ giống nòi)
Population Quality
In 2001, the Vietnamese government announced a new population strategy for the 2001— 2010 period (B6 Y Té 2011) The stated goal was to stabilize the population growth rate and ‘to improve population quality and develop a human resource of high quality in order to meet the requirements of industrialization and modernization, making a contribution to the rapid and sustainable development of the country’ By 2005, after having stabilized population growth, the government sought to align itself with international trends emphasizing reproductive health rights, development, and poverty reduction This shift is reflected in the 2010-2020 Population Strategy; during the first five years of this program, efforts were stepped up to improve the ‘quality of the race` (chế lượng giống nòi)
‘Population quality’ refers to the ‘physical, mental, and spiritual’ (thé ch&, tri tu6, tinh than) aspects of an individual, the family, and the nation Attention to physical quality begins by ensuring that one bears a healthy child (with no congenital diseases, birth defects, or health abnormalities) and continues to promote good health throughout life by eating well and exercising regularly Mental quality refers to intellectual abilities that can be honed through ongoing education Spiritual quality is developed and maintained by engaging in proper conduct consonant with other governmental campaigns such as the New Cultural Family Campaign and the Happy Family Campaign, which together call for families to be harmonious and happy, mutually support their neighbors, use family planning, be dutiful citizens, and take responsibility for one’s own reproductive and economic success The population quality campaign is a moral project similar to previous forms of Vietnamese governance through which the state calls upon families to act responsibly —both for their own benefit and for the good of the nation.”
The Vietnamese government’s population quality agenda reflects the country’s desire to enhance its international standing as a modern nation This is evident from reports linking lin the early 1990s the Vietnamese Government launched The Social Evils Campaign (6 nạn xã hội) to stop people from engaging in harmful practices such as drug use and prostitution “Because the HIV/AIDS epidemic emerged coincident with increased drug use and prostitution, the Social Evils legislation developed in tandem with HIV/AIDS legislation” (Phinney 2008: 658) As a result PLHIV were considered to be immoral individuals—the assumption being that they contracted HIV from engaging in immoral behavior
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the current population strategy with international development indices A 2011 report from Tuoi Tre News cited governmental unease that Vietnam, ‘one of the 13t most populous nations in the world [only] ranks 108"" among 177 countries on the United Nations Human Development Index’ (Tuoi Tre Newsvn 2011) An earlier article titled, ‘Population quality — a thorny problem’ argued that “the low quality of the population has created numerous obstacles for national development, it is therefore essential for the whole society to improve the quality of the population” (Voice of Vietnam News 2009) The article identifies PLHIV, the disabled, and people living with an inadequate diet, poor health and a lack of proper sanitation as examples of ‘obstacles’ to the creation of a quality population.3
An unintended effect of the discourse on quality population, designed no doubt to encourage families (which in practice means mothers) to take responsibility for raising happy, healthy, and educated productive adults, is ‘a growing tendency to evaluate certain forms of reproduction as inappropriate or unconscionable ’ (Leshkowitz 2012: 158) This reproductive responsibility plays out in two ways First, the government’s promotion of antenatal and neonatal screening has led many women to track fetal development, using ultrasounds to assess the likelihood that they will bear a sufficiently high-quality baby It is considered a woman’s responsibility to ensure she gives birth to healthy, beautiful children who will be able to contribute to society In contrast to healthy children, ‘defective children’
—those with physical disabilities or health problems —are considered to be potential burdens, incapable of contributing to their families or to society This call for reproductive self-monitoring, combined with anxieties about birthing a defective child, has led to rising rates of abortion In some cases, pregnancies were terminated in response to evidence of minor health or physical ‘defects’ (Gammeltoft 2008; Ngoc Ha 2011; Lien 2012) Second, the Vietnamese government’s project of creating a quality population has led governmental officials, doctors, and the citizenry to depict some people’s reproductive desires as more valuable than others’ This reflects the belief that some parents may not be able to adequately raise quality children or may simply be unable to care for their own children themselves, causing their offspring to become familial or social burdens Similar to ‘monster mothers’ who abandon their infants (Leshkowitz 2012), people with physical disabilities (PWD) are not considered worthy of reproduction According to a recent report conducted by the Institute for Social Development Studies (ISDS), people with disabilities are ‘considered a threat to the welfare of other “normal” people’ ‘In the end’, writes Le Bach Duong et al., the reasons people object to ‘PWD having children were more about “protecting” the welfare of “others”, rather than that of PWD’ (2008, 123)
2Concerns with ‘population quality” are not unique to the Vietnamese government The Chinese government previously developed a population campaign to improve the quality (suzhs) of the Chinese population (Yan 2003, Anagnost 2004, Kipnis 2006) However, in China “suzhi largely refers to a project of cultivating individual quality Families provide the resources to support children in this process” (Leshkowitz 2012, 502) The Vietnamese goal is to raise the quality of the family unit itself because the family, as reproducers of the nation and the basic unit of economic production — not the individual - is considered central to Vietnamese cultural life (Rydstrom 2010) Also see Ginsburg and Rapp 1995; Heng and Devan 1995
The Vietnamese government disseminates ‘population quality’ messages via propaganda posters and billboards, popular magazines, newspapers, and Internet blogs where photographs of beautiful intelligent families, robust children, and plump babies circulate Information on tactics to ensure and improve one’s physical health are ubiquitous, evident in the media, school health programs, and in the barrage of advertisements that market baby products to help children develop “superior intelligence” or to become “taller.”
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Phinney et al Page 5 It is within this context that we can best understand doctors’ self-contradictory position toward HIV-positive couples’ decisions to reproduce, which recognizes their reproductive rights in theory but in practice discourages the exercise of those rights
Research methods
The data for this paper draws on two studies that focused on the reproductive desires of PLHIV in Hanoi, Vietnam The first study was conducted from October 2008 through May 2009.4 Researchers conducted participant observation and semi-structured in-depth
interviews with the following subjects: ten married individuals between the ages of 28 and38 who are living with HIV (six couples already had a child); a male and a female doctor; four patients’ family members (two mothers and two fathers); a female HIV counselor; and two educators (male and female) recruited from national and city level/provincial hospitals and treatment centers The second study, ‘Demand for reproductive rights and sexual health of people with HIV in Vietnam’, was also conducted in 2009 by research staff at the Institute for Social Development Studies Data from that study is comprised of a total of twenty-nine interviews Fifteen interviews were conducted with PLHIV between the ages of 26 and 37 living in Hanoi: five married men and women, two single men, one single woman, one divorced woman, and one widowed woman (nine of these individuals already had a child) An additional fourteen interviews were conducted with people who provide reproductive and sexual health care for people who are HIV-positive (eight men and six women) These fourteen respondents were comprised of male and female medical professionals at a maternity hospital and a dermatology hospital, representatives from the Department of HIV/ AIDS, and representatives from the Center for HIV/AIDS In addition to these in-depth interviews, researchers conducted a discourse analysis of major newspapers and online Internet sites on topics related to women, families and HIV/AIDS, Social Evils, and Population Quality from 2009-2012
Reproductive desires and risks in the context of HIV/AIDS
In Vietnam, the emergence of anti-retroviral therapies (ART) has gradually altered expectations about the health and life expectancy of PLHIV (Vo Thi Nam et al 2010) Access to ART and the introduction of prevention of mother-to-child transmission (PMTCT) programs has intensified the desire of PLHIV to marry and bear children The implications of these medical advances for increasing the reproductive desires of PLHIV are potentially significant at both the individual and the population levels; the majority of PLHIV in Vietnam are of reproductive age (people with HIV aged 20-49 account for 92.5% of people infected) (VAAC 2011)
4This research was approved by the Vietnamese Academy of Social Science’s and Columbia University’s Institutional Review
Boards Interviews were taped and transcribed All data are confidential; names used are pseudonyms In order to maintain confidentiality we do not closely identify the relationship between our informant’s statements, their place of employment, or which
clinic patients attended
‘The focus of the research was to examine the patient-doctor relationship We conducted interviews with PLHIV of both sexes who wanted children and with male and female medical professionals working with PLHIV Interviewees were accessed through ART treatment facilities where we conducted the first interviews Subsequent interviews were conducted at a private location, such as the respondent’s home, a PLHIY self-help group office, or a local café Most informants were interviewed two to three times We
interviewed all ART patients individually, except for two married individuals who had spouse’s present
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Our data echo other work indicating that sero-positive and sero-discordant couples have reproductive desires and face reproductive obligations and responsibilities similar to those experienced by people who are not HIV-positive (Oosterhoff 2008; Oosterhoff et al 2008) However, PLHIV’s reproductive desires differ in one critical way: their motives for having children are shaped by the larger HIV/AIDS social and medical context within which they must strategize to reproduce Not able to take their reproduction for granted, PLHIV must confront new reproductive technologies, engage in different reproductive strategies, and justify their decisions to bear children to the medical community
As has been well documented, most Vietnamese couples want children (Nguyen Thi Khoa 1993; Khuat Thu Hong 1996; Pashigian 2002; Phinney 2005) First, children are believed to bring joy and happiness Second, it is assumed that all Vietnamese naturally desire children; indeed most want two—a boy and a girl Third, married couples without children are considered to be imperfect families (KhOng tron ven), and are not considered to be normal Fourth, children provide old age support There are few reliable social security programs that provide places for the elderly to live (UNFPA 2011) The adage, ‘youth depend on parents, elderly depend on children’ (‘tré cay cha, già cay con’) still holds And fifth, childbearing confers status A husband demonstrates his virility and manhood, and by experiencing motherhood, a wife becomes a complete woman Through this process both become truly mature (/rưởng thành) and connected (gấn bô)
Our informants who were HIV-positive and receiving ART wanted children for all of the above reasons Yet, other concerns —reflective of their HIV status and the stigma and discrimination PLHIV experience in Vietnam®—also influenced their reproductive desires and strategies First, as a result of their HIV status, as husbands men felt obligated to and responsible for their wives Women’s survival and success in a patriarchal and patrilineal household often depends on their ability to create a uterine family (Wolf 1972) One husband on ART whose wife did not have HIV said,
I just want to have rights for my wife, that is all I think that, if I [am going to] die, then I must give my wife a child so she won’t suffer as much To be honest with you, neither of our families knows about my situation So our desire to have a child is even greater Well, I want a child to partly compensate my wife
Another husband on ART said he wanted a child because ‘If you have a child, it acts as a bond to the husband’s family My wife does not get along with my family already so without some binding it would be hard’ A child is ‘a string’ (sof day) that binds family members and different generations together Similar to infertile women, HIV-positive women or those whose husbands are HIV-positive are at risk of being pushed out of their husband's family if they remain childless.”
A second motive for having children is to hide their HIV status from family, friends, and workmates This is true for both childless couples and couples who have only one child An ART counselor, echoing our HIV patients’ feelings of family pressure said, ‘I think they
ỐAIso see Khuat Thi Hai Oanh 2007
The Vietnamese kinship system is patrilineal and patrilocal When a woman marries, she will reside with her husband”s natal family unless or until the couple can establish an independent household
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have children to hide [their HIV status] from their parents This creates stress’ The wife in one sero-positive couple, both of whom were on ART, discussed the pressure she felt to have a second child,
Actually, only we know that we got infected Nobody around my house knows The grandparents tell us that the first child is old enough so we should give the child a sibling Sometimes, when I look at my child playing alone, he looks sad The child always tells me that she wants a younger sibling so we want another child We want to know if there is any medicine to help us have another child We are desperate
Because she and her husband were hiding their HIV status from family members, this wife feared that failing to bear a second child would trigger inquiries about why they did not conform to this widespread social expectation
A third observed motive for desiring a child is to demonstrate to others that PLHIV are ‘normal’ (binh thuOng) or to prove they are ‘good people’ Another man on ART said, ‘It is a matter of honor, of me being a man the neighbors, they keep sneering If I have my own kid, then I prove to everyone [that I am a man and not sick] If it is someone else’s kid
[adopted child] then maybe [they think] I am sick.’ A woman living with HIV who did not yet have a child—and who revealed during the interview that she was a sex worker— reported that her neighbors say she ‘plays too much’ and that is why she does not have children By equating irresponsibility with both her means of earning a living and her lack of children, the woman’s neighbors appeared to pressure her to prove that she was responsible and normal like them by getting pregnant Our informant emphatically denied this
accusation of irresponsibility, stating that she wanted a child anyway, for herself Of course, bearing a child would prove the neighbors wrong.8
If couples do not conform to society’s pressures to reproduce at the appropriate times, they must confront the ubiquitous and unrelenting questions about why they are not yet pregnant and when they will decide to have a child If they do not bear a child, or opt not to have a second child, they may be stigmatized for their reproductive inadequacy (Phinney 2005; Pashigian 2002) Because PLHIV must wait to get pregnant until they are healthy and can minimize the risks of transmitting HIV, fear of disclosure is exacerbated and the desire to demonstrate they are ‘normal’ is made even more difficult This describes the situation of one seropositive couple (ages 34 and 38) that has one son and is being pressured by their parents to have another child
These additional motives for having a child reflect the climate of stigma and discrimination through which PLHIV must navigate Medical advances have reduced the risks of perinatal transmission—with adequate health care treatment and patient compliance the risk of mother-to-child transmission (MTCT) can be reduced from 30% to 2% —but the risk of transmission remains Nonetheless, this is a risk many of our informants were willing to take
8The phrase ‘A dry tree doesn’t have buds, a cruel person can’t have children [ Cây khô không lộc, nguot déc khéng con|’ illustrates
the traditional association between personal character and fertility
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Delineating the distinction between “social risk” and “viral risk” is useful for appreciating our informant’s reproductive logic (Lupton 1994) While viral risk refers to epidemiological risks, the concept of social risk recognizes that risks are socially embedded, dangers associated with risks make sense in a particular social, economic, political, and cultural context (Douglas 2002) ‘People navigat[e] opportunities and constraints that may be economically, socially, and culturally more salient, significant, and obviously consequential than the biomedical risk of HIV infection In short, they may prioritize social risks above the biomedical risk of HIV’ (Hirsch et al 2009: 19)
Among our informants, while sero-concordant HIV-positive couples must balance the social risk of not bearing children with the risk of transmitting HIV to their child, the risks sero- discordant (‘trai d&’/’coc cach’) couples bear are compounded by the fear of also transmitting HIV to the spouse (usually the wife); they experience conflicting impulses Sero-discordant couples appear less willing to assume the viral risk of infection in order to avoid the social risk of remaining childless or only having one child As one male ART patient said, ‘I also want to have a child, but I do not want my wife to get infected.’ Another man who was considering having sexual intercourse without a condom on his wife’s day of ovulation said, ‘My wife is afraid so we do not dare do it that way.’ Yet another man said, ‘My only concern is getting my wife infected.’
At the same time, other sero-discordant couples may regard the opportunity to get pregnant as part of ‘life’s gamble’ (‘canh bac cudc dot’) or as ‘the couple’s chance’ (‘co’ may cla vO" chồng”) (Nguyen Hang, n.d.) Referring to a couple with HIV, one counselor remarked, ‘In the beginning, they did not want to have a child because they knew the risk Later, they realized that they do want a child so they accepted the risk without going through
counseling’ As is the case with risky sexual behavior (Hirsch et al 2009; Sobo 1995), the social risk of ot reproducing — the stigma of reproductive inadequacy - outweighs the viral risk of marital or perinatal HIV transmission “Rather than seeing people who make these choices as .irrational, or uneducated slaves to culture and tradition, it is more accurate to see them as acting sensibly in the circumstances in which they live” (Hirsch et al 2009: 19)
Stratifying Reproduction: Medical perspectives on reproductive risks
Doctors’ attitudes on whether PLHIV should have children have changed since the introduction of PTMTC programs A female counselor at a nonprofit aid organization recalled that ‘In the past, when HIV patients said they wanted to have children, they were yelled at now it is more open Now PLHIV get information and advice Before, they might be stopped Now they have the right to think for themselves’ Yet, the Ministry of Health’s (MOH) stance on PLHIV reproductive desires appears contradictory The reproductive rights of PLHIV have been recognized, but the MOH currently does not allow HIV-positive couples access to reproductive technologies that would enable them safely to get pregnant (Quế: hội nước Cộng hòa Xã hội Chủ nghĩa Việt Nam) ` While the MOH is currently working to revoke this decree (personal communication MOH), the message it conveys remains problematic
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Phinney et al Page 9 The medical professionals we interviewed all recognized, and were mostly sympathetic to, PLHIV’s reproductive rights and đesires.10 Ultimately , however, the message they convey is that PLHIV should not bear children The following quote by a male dermatologist summarizes the opinion of many of the medical professionals we interviewed who work with PLHIV
In general, we need to weigh the right to have children and the responsibility to have healthy children Thus, we have to advise patients that with HIV, they should not have children If they already have a child then they should not breastfeed I also hold responsibility because I have helped give birth to a child with HIV A female doctor working at a reproductive health clinic said,
My viewpoint is that they should not have a child because they might pass it to their child Of course the medicine enables them to prevent [HIV transmission] very much, but the future is clearly much worse Who would take care of the child after the mother died? Who would take care of the children with both grandparents and parents dead? It is hard for children to be alone In my opinion, [even when] both parents are healthy the children still might not receive adequate care In my opinion they shouldn’t [get pregnant] because of the child
Other HIV-positive patients we interviewed confirmed that they had encountered this type of advice from doctors and nurses when they explained their desires to bear a child Women who had not yet borne a child reported that they were shown tolerance, put on ARTs, and enrolled in a PTMCT program Women in the early stages of pregnancy were advised to abort the child if they were not already on a treatment program Women in the later stages of pregnancy were put on the appropriate treatment regimen to PMTCT and were encouraged —if not actually required—to get sterilized shortly after giving birth (One of our
informants, age 28, who had a two-year-old son, was given a tubal ligation without her permission after the doctors performed a cesarean section.) Women who already had borne a child were encouraged to get sterilized and not have another Indeed, a female director of a family planning and maternity counseling center said, ‘I am very critical of those with HIV who already have one child, but are still trying to have a second one’ A dean of an obstetric department concurred, ‘Their desire to have children is plausible There is nothing to stop them I need to advise them if they already have a child, I advise them not to have another one’ Sero-discordant couples were advised to use the husband’s brother’s sperm to get the wife pregnant so they would have a child biologically related to the patriline Other research has also documented that PLHIV are sometimes advised not to have a child, to adopt a child or become godparents rather than risk transmitting HIV to their child (Mai Doan Anh Thi et al 2008; Oosterhoff et al 2008)
In contrast to their PLHIV patients who conceptualize reproductive risk in individual or familial terms, medical professionals conceptualize PLHIV’s reproductive risks in terms of the collective good or the nation The advice doctors provide their patients is based on their current understanding of the risks of MTCT and the current life expectancy of PLHIV and
10Ajso see Oosterhoff et al (2008)
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their responsibility to raise the quality of the population But it is not their medical advice per se that is problematic or significant; the problem is the tenor of the language in which the advice is couched In our conversations with service providers, the majority shared the same concern: that they are the ones with the knowledge and responsibility for increasing the quality of the population for the country The following statements from two different medical professionals reveal the ways in which the government's discourse on population quality informs their advice A male assistant medical director of a hospital reflected on the decisions of PLHIV to have children:
The desire to have children is the general rule of all men and women People with HIV, they realize that this is a deathly disease The ratio of mother-to-child transmission is fixed, not every child will get HIV If they fully understand the problem and how it works, perhaps they will not have children People with higher awareness and ethics will give more consideration to this because giving birth to a child will create suffering for themselves and for the child, adding a sin (cai tdi) to the child After that is the problem of putting a burden on society (/ai gdénh nang cho xa hGi) If they realize this clearly, they do not want to have children And of course, there are people who entrust everything to society, entrust their lives They just live their lives Those people, like I mentioned before, can't restrain
themselves and do not have the right understanding This same person went on to add,
I just told you that if people are aware, then they must be people who belong to the well-educated class in order to recognize the issue Those people will reconsider whether they should have children or not But those who want to have children; they belong to a lower class or have a low level of education
A male treatment doctor thought about PLHIV’s decisions to have children this way, If they [PLHIV] sce this as a risky thing then maybe they might not want to have an infected baby The more awareness they have the more they will reconsider their decision Having an infected child is troubling yourself and the child Later this becomes a burden for society Of course there are people who choose to leave it up to society They can’t control themselves and they do not have the correct awareness or outlook on this issue People with the right awareness are educated people They are the ones with the ability to reconsider They end up not having children People with the desire to have children come from lower classes or are not very well-educated
Our interviews with medical professionals— doctors, counselors, and nurses —indicate underlying frustration with patients who do not follow their reproductive advice There was a disjuncture between the patients’ reasons for having children and the doctors’ explanations of the risks run by PLHIV, and it is this disjuncture, in part, that led doctors to characterize PLHIV in a stigmatizing manner
Both patients and doctors understand the viral risks, but they do not conceptualize social risk the same way As Douglas points out, while danger “is defined to protect the ‘public good’; the ‘public good,’ of course, is in the eye of the beholder” (Douglas [2002, 6] in Hirsch et
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al 2009:206) Patients’ social risks, discussed in the previous section, revolve around their fear of stigma associated with not bearing children Doctors, on the other hand, view social tisk not in individualistic or familial terms, but in relation to the population at large As role models in Vietnamese society and arbiters of the public good, doctors’ concern for the national public health may conflict with patient and familial reproductive goals The social tisk from the doctor’s perspective is the risk of increasing the incidence of HIV in
Vietnamese society Therefore, in order to reduce the rate of HIV in society, the ‘most natural method’, as one doctor said, is simply to prevent PLHIV from reproducing For doctors, in contrast to their patients, there is no tension between the practices that would avoid social risk and those that would avoid viral risk
Rather than recognize the discrepancy between the two differing conceptualizations of social tisk, doctors tend to be dismissive of PLHIV who decide to have a child and clinicians often use stigmatizing terms to explain the patients’ choices First, doctors suggest that PLHIV who decide to have children are considered irresponsible because they are ‘unable to control their desires’ This is an interesting juxtaposition to the accusation lodged against one woman by her neighbors—discussed in the previous section— which suggested that zot having a child proved she was irresponsible Second, PLHIV are characterized as
uneducated and lower class, assumed to be unable to fully understand the risks of having a child, and thus unable to recognize their duty to the nation Third, PLHIV who desire a second child are considered to be immoral Commenting on a couples’ desire to have a second child, one doctor asserted, ‘What they want is beyond the law’; it is immoral Fourth, women living with HIV, who might pass the virus to a child, are considered imperfect women as a result For this reason, doctors believe they should not be allowed to become mothers Fifth, doctors portray the children of PLHIV as social burdens One medical professional from a maternity hospital put it this way: ‘If we [parents] do not raise the child after giving birth, it is painful In a family without parents, the child will not be complete (khơng hồn thiện)"
As Leshkowitz notes, ‘Claims about parental unfitness reflect a growing tendency in Vietnam to explain class differences in terms of individual issues of morality, education, and “cultural level” (tinh d6 van hod)’ (2012, 498) While the medical establishment attributes PLHIV’s decisions to proceed with bearing a child to a lack of knowledge, education, and/or ethical responsibility, our research suggests otherwise While other research does indicate that many people’s knowledge about biomedical aspects of HIV transmission is imperfect, most of our informants engaged with ART treatment programs were either well-informed, getting informed, or seeking information as to how they could access PMTCT Their desire to bear a child was not a reflection of any inability to think through the viral risks of HIV transmission Rather, they sought to proceed despite those risks, responding to the more highly prioritized social risks of remaining childless and/or not having a second child or a son It is the doctors’ dismissal of their patients’ risk calculus and the language used to do so that stigmatizes PLHIV Not only is it stigmatizing, it is performative; by both reflecting and reproducing stigma, the doctor’s behavior can ‘actually shap[e] children’s future
marginalization, thus producing what is denounced’ (Fassin 2002, 243)
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Due to the lingering association of social evils with HIV, doctors worry that PLHIV will not be able to adequately integrate their children into society because the social environment is not conducive for doing so A female obstetrician working at an AIDS center said, ‘Our society stigmatizes children with HIV How can such children go to school, deal with teachers ? Not everyone will give them a friendly look, or share with them This is why I advise [HIV-positive women] to prepare for sterilization’ This health worker, along with other health professionals, advises HIV-positive parents not to bear children because of ‘the future of the child’ But it is not just the child they are concerned about; they are also worried about potential repercussions for the rest of society Doctors worry that PLHIV, considered immoral by many people, will raise immoral children by virtue of that fact If PLHIV are aware of the likelihood of these social risks why would they want to reproduce? This perspective makes PLHIV’s decisions to proceed with reproduction all the more incomprehensible to medical professionals
Yet there is something else going on here other than a differential risk calculus and attribution of meaning And that is a different view of the future People living with HIV, having been given access to ART, have begun to envision futures for themselves — futures that entail creating a normal family, living a longer life, and creating new goals (Bernays et al 2007) The doctors, on the other hand, do not see a promising future Instead, they project a future in which PLHIV’s children either have HIV, become a burden to society because they have been abandoned, or are raised in inadequate familial and social environments that are non-conducive to raising children They assume this because, in addition to genetic and heath factors, the quality of the population in Vietnam is also believed to be affected by environmental factors, living standards, and parental involvement (Nguyen Quoc Anh, 2011)
This stigmatizing process configures the reproductive desires and achievements of PLHIV as problematic because they are depicted as a social burden These not-so-hidden messages drive PLHIV away from clinical care and lead them to seek support for their reproductive desires elsewhere, as we describe below
Seeking support elsewhere: The effects of authoritative knowledge
Drawing on Jordan’s (1996) concept of authoritative knowledge, Browner and Press argue that “In situations of structural inequality one set of rules or forms of knowledge gains authority, devaluing or delegitimating others (1996: 142) Such is the case in Vietnam where the traditionally asymmetric relationship between doctors and patients in Vietnam has become further exacerbated by the abject social position of PLHIV As a result, our
informants had difficulty obtaining in-depth information from the doctors who treated them in a demeaning fashion The attitude toward PLHIV is illustrated by a female informant who remarked, ‘Before I took 2 pills, I asked them what the drug was The nurse said to me, did I want to give birth or not, so why did I ask? Thus, I swallowed my problem and didn't ask again’ The stigma PLHIV patients experience from medical personnel, as well as the constant reminder that they are ill—and therefore unfit parents—lead some PLHIV to view their interactions with doctors and nurses with trepidation and foreboding, rather than as avenues for hope It may explain why many HIV-positive pregnant women do not seek
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Phinney et al Page 13 prenatal care and why in Vietnam pregnant women in general do not get tested for HIV early on in their pregnancies (Duong Cong Thanh et al 2012) Indeed, pregnant women’s reluctance to seek early testing could be considered a paradigmatic example of the ways in which avoidance of social risk can outweigh avoidance of medical risk.1!
PLHIV on ART who feel stigmatized in the clinic and/or decide to risk giving birth despite their doctor’s advice may engage in alternative reproductive strategies Some informants sought out new social networks— PLHIV who have successfully given birth to HIV- negative children—that provided them with the information and support necessary to achieve their reproductive goals As a result, some PLHIV decided to get pregnant but only saw a doctor at the time of the birth Others went to a private clinic where a blood test was not required Recognizing that the government's population program frames them as not fit to reproduce, some HIV-positive women sought reproductive advice outside the medical establishment.!2
Conclusion: ‘The right to a nonprojected future’
The reproduction of stigma takes place by characterizing PLHIV as inadequate and ill equipped to raise normal children who will be productive members of society This
marginalizes them, as it consigns them to a status of abnormality; in doing so, this projects a future of stigma and discrimination Providing ART to PLHIV and then asking them not to reproduce denies them a place in their family, in society and a role in the future Rather than calling upon society to help non-family members succeed (as the North Vietnamese
government called upon them to do during the Indo-China wars), the Happy Family Campaign asks individual families to take responsibility only for themselves (Phinney 2003) The Vietnamese government’s focus on population quality has exacerbated existing discriminatory attitudes towards PLHIV; stratified reproduction (in other words,
reproductive stigma) functions as part of the social process that recreates the differential social valuation of people living with HIV
In order to fully understand the tenor of medical professional’s advice, it is necessary to understand the cultural context of government efforts to raise the quality of the population From the doctors’ perspective, it is not simply that PLHIV are uneducated, but that they fail to recognize their own moral responsibility as Vietnamese citizens if they decide to proceed with their desire to reproduce Clinicians suggest that PLHIV’s precarious health status means that they are not in a position to adequately educate and nurture their children’s intellect (as parents are encouraged to do) Because stigma and discrimination of PLHIV and their families still exists in Vietnam, PLHIV who raise children are forced to do so in an environment that is not conducive to creating a “happy” family that reflects the expectations of the Vietnamese government For these reasons, medical professionals advise PLHIV not
11 Also, see Mai Doan Anh Thi et al (2008) and Duong Cong Thanh et al 2012) A similar phenomenon takes place in Kenya
whereby anticipated stigma keeps women from seeking PMTCT (Cuca, et al 2012)
2Since 2004 when the Sunflower support group for HIV-positive mothers and pregnant women was established, other groups have
sprung throughout the country to provide HIV-positive women (and their husbands) with support, friendship, and advice on
preventing transmission of HIV to their children (Oosterhoff 2008)
Trang 141dJ12snueIq 1ouiny ÿa-HIN 1dII2snueI\ 1ouny ÿaI-HIN jduosnuew Jouiny Vd-HIN to reproduce, suggesting that they will not contribute to improving the quality of the population
Our findings suggest that normalizing and upholding the value of reproduction among individuals who are HIV-positive could act as an effective intervention in reducing
community-level stigma In communities in which childbearing is regarded as a critical step towards adulthood and children are highly valued, positive and supportive community-level conversations about reproduction and parenting among HIV-positive individuals may be an effective means of countering the persistent stigmatization and devaluation faced by individuals living with HIV in Vietnam
Access to ARTs provides PLHIV with the capacity and vision to achieve a sense of social and personal equilibrium again Having a child is one element of this Given the opportunity to live a normal life, there is no reason PLHIV shouldn’t; bearing and nurturing a child would enable PLHIV to re-confirm the normalcy that has been questioned by HIV prejudices
Joao Biehl opens his book, Wil/ to Live: AIDS Therapies and the Politics of Survival by quoting Albert O Hirschman’s call for “the right to a nonprojected future” Bichl writes, ‘At stake is helping “‘to defend the right to a nonprojected future as one of the truly inalienable rights of every person and nation; and to set the stage for conceptions of change to which the inventiveness of history and a ‘passion for the possible’ are admitted as vital actors”’ ({Hirschman 1971, 37] in Biehl 2007:3)
PLHIV who decide to bear children have challenged the moral authority and rationality implicit in their doctors’ “authoritative knowledge” that renders PLHIV incapable of contributing to the public good (Jordan 1997: 58) In their rejection of the medical
establishment’s authoritative knowledge, PLHIV are doing no less than asking for “the right to a non-projected future” It is imperative, as doctors in Vietnam advise PLHIV on ARTs who seek to bear children, that Albert O Hirschman’s words be remembered
Acknowledgments
This work was funded by The National Institutes of Health (R24 HD 056691-PI Hirsch) for which we are most grateful
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