positions "I Am AIDS":Living with HIV/AIDS in China Xiaopei He and Lisa Rofel How and why do people in China create an identity out of their medical status of having HIV/AIDS?Is it liberating for them to"come out"as HIV- positive,or do they experience this coming out as a form of governmentality or pastoral care?This essay examines questions of identity,language,and power in relation to HIV/AIDS.Literature on the social and discursive con- struction of homosexual identities in the face of homophobia offers impor- tant insights into the construction of an HIV/AIDS identity in China,not because homosexuality and AIDS go together in this context,but because insights about lesbian and gay identity formation might illuminate this pro- cess of a stigmatized medical identity in China as well.This essay argues, however,that there is an unexpected twist.In certain consequential respects, the social processes of constructing these two different identities are not so much structurally parallel to each other as the obverse of one another. positions18:2Do110.1215/1o679847-2010-012 Copyright 201o by Duke University Press Published by Duke University Press
“I Am AIDS”: Living with HIV/AIDS in China Xiaopei He and Lisa Rofel How and why do people in China create an identity out of their medical status of having HIV/AIDS? Is it liberating for them to “come out” as HIVpositive, or do they experience this coming out as a form of governmentality or pastoral care? This essay examines questions of identity, language, and power in relation to HIV/AIDS. Literature on the social and discursive construction of homosexual identities in the face of homophobia offers important insights into the construction of an HIV/AIDS identity in China, not because homosexuality and AIDS go together in this context, but because insights about lesbian and gay identity formation might illuminate this process of a stigmatized medical identity in China as well.1 This essay argues, however, that there is an unexpected twist. In certain consequential respects, the social processes of constructing these two different identities are not so much structurally parallel to each other as the obverse of one another. positions 18:2 doi 10.1215/10679847-2010-012 Copyright 2010 by Duke University Press positions Published by Duke University Press
positions positions 18:2 Fall 2010 512 The literature on lesbian and gay identities tends to emphasize a process whereby marginalized subjects embrace a dominant negative language about themselves and rework its meaning into a positive valence."Coming out"becomes a positive means to challenge heteronormativity. In contrast,with the social and discursive construction of HIV/AIDS identities in China,public health officials and journalists-elites with the power to construct a dominant definition of the disease-tend to use lan- guage that has a positive valence to represent their awareness of the need to fight against AIDS stigma and to break the silence about AIDS.They encourage those with HIV/AIDS to"come out"to publicize the disease. While these doctors,officials,and journalists invoke the rubric of"care"to conduct their work,the effects are to use these individuals'public coming out stories to make them wear the sign of excess and thereby try to normal- ize non-HIV-positive citizens.Thus,the dominant discourse has already colonized the meanings of liberation that adhere in the ability to name one- self with a stigmatized identity. Those who feel oppressed by this exploitative pastoral care have devel- oped a reverse discourse.2 In this reverse discourse,those infected with the disease have not turned a pathologizing medical discourse around to refer in an affirmative manner to themselves,but rather have created a negative language that provides the basis for their critique of power in the speech- acts of disclosure.3 This essay highlights the need to pay close attention to the specific historical,political,and cultural contexts in which struggles over language,power,and identity take place.Not all coming out stories can be equated with liberation or with countering the power of the dominant. On the other hand,the research on which this essay is based clearly dem- onstrates that the language of the dominant is always subject to subversive reappropriation.To some extent,those who are HIV-positive turn language back on the power that constructs their identity for them. My interest in the issue of HIV/AIDS arose when I became active in the lesbian and gay movement in China.I began by facilitating safe-sex train- ing sessions in Beijing in the late rggos.To my surprise,I could hardly find any publications about AIDS in the bookstores.Slowly thereafter,AIDS information and activism in China began to emerge on Web sites,radio pro- grams,and publications.Turning my activism into research,I,too,began Published by Duke University Press
positions 18:2 Fall 2010 512 The literature on lesbian and gay identities tends to emphasize a process whereby marginalized subjects embrace a dominant negative language about themselves and rework its meaning into a positive valence. “Coming out” becomes a positive means to challenge heteronormativity. In contrast, with the social and discursive construction of HIV/AIDS identities in China, public health officials and journalists— elites with the power to construct a dominant definition of the disease— tend to use language that has a positive valence to represent their awareness of the need to fight against AIDS stigma and to break the silence about AIDS. They encourage those with HIV/AIDS to “come out” to publicize the disease. While these doctors, officials, and journalists invoke the rubric of “care” to conduct their work, the effects are to use these individuals’ public coming out stories to make them wear the sign of excess and thereby try to normalize non-HIV-positive citizens. Thus, the dominant discourse has already colonized the meanings of liberation that adhere in the ability to name oneself with a stigmatized identity. Those who feel oppressed by this exploitative pastoral care have developed a reverse discourse.2 In this reverse discourse, those infected with the disease have not turned a pathologizing medical discourse around to refer in an affirmative manner to themselves, but rather have created a negative language that provides the basis for their critique of power in the speechacts of disclosure.3 This essay highlights the need to pay close attention to the specific historical, political, and cultural contexts in which struggles over language, power, and identity take place. Not all coming out stories can be equated with liberation or with countering the power of the dominant. On the other hand, the research on which this essay is based clearly demonstrates that the language of the dominant is always subject to subversive reappropriation. To some extent, those who are HIV-positive turn language back on the power that constructs their identity for them. My interest in the issue of HIV/AIDS arose when I became active in the lesbian and gay movement in China.4 I began by facilitating safe-sex training sessions in Beijing in the late 1990s. To my surprise, I could hardly find any publications about AIDS in the bookstores. Slowly thereafter, AIDS information and activism in China began to emerge on Web sites, radio programs, and publications.5 Turning my activism into research, I, too, began positions Published by Duke University Press
positions He and Rofel I Living with HIV/AIDS in China 513 to change.Whereas I first thought of AIDS predominantly in relation to government policies,I came to see that an"AIDS discourse"regulates social practice.I came to realize that the AIDS epidemic is both a physical disease that damages the human immune system and a social virus that stigmatizes people who have the infection.This essay thus builds on the pathbreaking work of Paula Treichler who,early into the AIDS epidemic,argued that the very nature of AIDS is constructed through language.Treichler traced the epidemic of contradictory meanings in AIDS discourses that made it into a"gay disease"and shaped the scientific research and knowledge about the etiology of and cure for AIDS.In following Treichler's inspiring work,this essay focuses on how HIV/AIDS itself has been made into an identity in China that has been utilized to normalize citizens. This AIDS discourse derives primarily from medical professionals'and the media's representations.Doctors'medical training tends to lead them to examine the physical suffering but to overlook the social meaning of dis- eases.?Media representations often pursue graphic images and stories of dying patients,engendering fear of and discrimination against people liv- ing with the disease.However,we should not remain content with a mere deconstruction of expert discourses or media images.Rather,it is crucial to learn how the epidemic is lived and experienced.This kind of experien- tial understanding of the epidemic can provide better AIDS knowledge for those attempting to eradicate the disease.My study of AIDS is motivated by this activist purpose. Between August 2002 and October 2003,I was in China interviewing infected people.s Initially,I had assumed that my previous experience in gov- ernmental and activist work on LGBT and AIDS health in China would enable me to reach people willing to share their stories with me.It turned out,however,that access to infected people was extremely difficult.At the time,AIDS was still a politically sensitive issue,as the government was trying to cover up the news that thousands of farmers in Henan province had con- tracted HIV through selling blood to blood stations with inadequate safety precautions.AIDS activists Dr.Gao Yaojie,Wan Yanhai,and Chung To were either arrested or surveilled by state officials for exposing this situation. On the one hand,there was an official gaze to stop the AIDS issue becoming a political scandal;on the other,there was AIDS stigma,which Published by Duke University Press
He and Rofel ❘ Living with HIV/AIDS in China 513 to change. Whereas I first thought of AIDS predominantly in relation to government policies, I came to see that an “AIDS discourse” regulates social practice. I came to realize that the AIDS epidemic is both a physical disease that damages the human immune system and a social virus that stigmatizes people who have the infection. This essay thus builds on the pathbreaking work of Paula Treichler who, early into the AIDS epidemic, argued that the very nature of AIDS is constructed through language. Treichler traced the epidemic of contradictory meanings in AIDS discourses that made it into a “gay disease” and shaped the scientific research and knowledge about the etiology of and cure for AIDS.6 In following Treichler’s inspiring work, this essay focuses on how HIV/AIDS itself has been made into an identity in China that has been utilized to normalize citizens. This AIDS discourse derives primarily from medical professionals’ and the media’s representations. Doctors’ medical training tends to lead them to examine the physical suffering but to overlook the social meaning of diseases.7 Media representations often pursue graphic images and stories of dying patients, engendering fear of and discrimination against people living with the disease. However, we should not remain content with a mere deconstruction of expert discourses or media images. Rather, it is crucial to learn how the epidemic is lived and experienced. This kind of experiential understanding of the epidemic can provide better AIDS knowledge for those attempting to eradicate the disease. My study of AIDS is motivated by this activist purpose. Between August 2002 and October 2003, I was in China interviewing infected people.8 Initially, I had assumed that my previous experience in governmental and activist work on LGBT and AIDS health in China would enable me to reach people willing to share their stories with me. It turned out, however, that access to infected people was extremely difficult. At the time, AIDS was still a politically sensitive issue, as the government was trying to cover up the news that thousands of farmers in Henan province had contracted HIV through selling blood to blood stations with inadequate safety precautions.9 AIDS activists Dr. Gao Yaojie, Wan Yanhai, and Chung To were either arrested or surveilled by state officials for exposing this situation. On the one hand, there was an official gaze to stop the AIDS issue becoming a political scandal; on the other, there was AIDS stigma, which positions Published by Duke University Press
positions positions 18:2 Fall 2010 514 made infected people cautious about disclosing themselves.As a researcher and a student from a Western-based university,I was viewed with suspicion by both officials and people with HIV infection.For about two months I failed to find a single informant.A close friend who is both gay and an AIDS activist even suggested that I change my research topic. I finally learned that an organization for HIV-positive people existed.It is called Mangrove.Sponsored by the Ford Foundation,Mangrove started in 2002 as an informal self-support group run by HIV-positive people.I reached this organization by becoming a representative of the International HIV/AIDS Alliance,for whom I was doing consultation work at the time. Having access to this group gave me the rare opportunity to meet many AIDS activists,who are the main informants for my research.Through attending the meetings I met many infected people.I had the opportunity to explain my research.Most of the infected people at these meetings were supportive.Not only did many of them agree to be interviewed,but they also invited me into their homes.Through one year of fieldwork,I con- ducted eighteen interviews (one to three hours each),two group discussions, and three participant-observations at people's houses and detox centers,for which I stayed from two to four days.All quotes in this article come from those interviews and discussions. What is most striking in listening to infected people's stories is their emphasis on the importance of language use.Stuart Hall has argued that language is the privileged medium in which we make sense of things,that language is central because meanings have real,practical effects in the world.0 By exploring the different usages of language among infected peo- ple,doctors,and the media,this essay explores how differently positioned people represent the experiences of living with HIV in China. This essay argues first that different language use represents different interests and experiences.There are language differences between infected people and public health officials and media in describing and disclosing HIV status.Public health officials and journalists tend to use language that has positive valence to represent their eagerness to break the AIDS silence. Infected people,by contrast,use language with negative valence to high- light how the disclosure process encouraged by these officials and journal- ists comes at the price of sacrificing themselves.Their negative language Published by Duke University Press
positions 18:2 Fall 2010 514 made infected people cautious about disclosing themselves. As a researcher and a student from a Western-based university, I was viewed with suspicion by both officials and people with HIV infection. For about two months I failed to find a single informant. A close friend who is both gay and an AIDS activist even suggested that I change my research topic. I finally learned that an organization for HIV-positive people existed. It is called Mangrove. Sponsored by the Ford Foundation, Mangrove started in 2002 as an informal self-support group run by HIV-positive people. I reached this organization by becoming a representative of the International HIV/AIDS Alliance, for whom I was doing consultation work at the time. Having access to this group gave me the rare opportunity to meet many AIDS activists, who are the main informants for my research. Through attending the meetings I met many infected people. I had the opportunity to explain my research. Most of the infected people at these meetings were supportive. Not only did many of them agree to be interviewed, but they also invited me into their homes. Through one year of fieldwork, I conducted eighteen interviews (one to three hours each), two group discussions, and three participant-observations at people’s houses and detox centers, for which I stayed from two to four days. All quotes in this article come from those interviews and discussions. What is most striking in listening to infected people’s stories is their emphasis on the importance of language use. Stuart Hall has argued that language is the privileged medium in which we make sense of things, that language is central because meanings have real, practical effects in the world.10 By exploring the different usages of language among infected people, doctors, and the media, this essay explores how differently positioned people represent the experiences of living with HIV in China. This essay argues first that different language use represents different interests and experiences. There are language differences between infected people and public health officials and media in describing and disclosing HIV status. Public health officials and journalists tend to use language that has positive valence to represent their eagerness to break the AIDS silence. Infected people, by contrast, use language with negative valence to highlight how the disclosure process encouraged by these officials and journalists comes at the price of sacrificing themselves. Their negative language positions Published by Duke University Press
positions He and Rofel I Living with HIV/AIDS in China 515 not only represents experiences of depression resulting from disclosure,but also shows that infected people cannot be completely victimized.Instead, they are capable of developing the negative language tactically to challenge power. The second argument is that the tactics of language use in relation to HIV disclosure reveal the power struggles in the disclosure process.Even if infected people are not fully taken in by the ruse of power,as evidenced by their employment of negatively valenced terms in representing their own experiences,the very disclosure process forces infected people to wear a sign of the disease-or,more accurately,to become a sign of the disease in their very personhood.This effect has led them to turn the AIDS epidemic into an identity.This identity,however,is not one they construct for themselves out of their own views and feelings,but one that others construct for them. Finally,utilizing positively valenced language to encourage infected peo- ple to disclose their HIV-positive status shows how language is a cultural and social practice.This positively valenced promotion of disclosure sets up infected people as exemplars in order to discipline certain behaviors and to regulate the social order.In other words,the disclosure process is one key strategy to create a"normal"society.Following Foucault's arguments in Dis- cipline and Punish,one can see that in China,disciplinary techniques often operate through "the model,"a mode of normalizing honed under social- ism.There were model operas,model workers,model neighborhoods,and so on.In their positive rendition,models were lionized through ceremonies and media representations and model plaques were hung on their homes, buildings,and persons.In their negative rendition,they were also lionized through public criticism sessions,media representations,and plaques or hats they had to wear with their political crimes written on them. Language Power With regard to the disclosure of one's HIV status,there are significant varia- tions in the use of terms:to come out(shanchulai),to push out (tuichulai),to tell (gaosu),and to expose(baolou).These different idioms are used to describe the action that reveals one's HIV-positive status,either through the infected person's intentional disclosure or through a third party's exposure.Infected Published by Duke University Press
He and Rofel ❘ Living with HIV/AIDS in China 515 not only represents experiences of depression resulting from disclosure, but also shows that infected people cannot be completely victimized. Instead, they are capable of developing the negative language tactically to challenge power. The second argument is that the tactics of language use in relation to HIV disclosure reveal the power struggles in the disclosure process. Even if infected people are not fully taken in by the ruse of power, as evidenced by their employment of negatively valenced terms in representing their own experiences, the very disclosure process forces infected people to wear a sign of the disease— or, more accurately, to become a sign of the disease in their very personhood. This effect has led them to turn the AIDS epidemic into an identity. This identity, however, is not one they construct for themselves out of their own views and feelings, but one that others construct for them. Finally, utilizing positively valenced language to encourage infected people to disclose their HIV-positive status shows how language is a cultural and social practice. This positively valenced promotion of disclosure sets up infected people as exemplars in order to discipline certain behaviors and to regulate the social order. In other words, the disclosure process is one key strategy to create a “normal” society. Following Foucault’s arguments in Discipline and Punish, one can see that in China, disciplinary techniques often operate through “the model,” a mode of normalizing honed under socialism.11 There were model operas, model workers, model neighborhoods, and so on. In their positive rendition, models were lionized through ceremonies and media representations and model plaques were hung on their homes, buildings, and persons. In their negative rendition, they were also lionized through public criticism sessions, media representations, and plaques or hats they had to wear with their political crimes written on them. Language Power With regard to the disclosure of one’s HIV status, there are significant variations in the use of terms: to come out (zhanchulai), to push out (tuichulai), to tell (gaosu), and to expose (baolou). These different idioms are used to describe the action that reveals one’s HIV-positive status, either through the infected person’s intentional disclosure or through a third party’s exposure. Infected positions Published by Duke University Press