Abstract
This paper analyses the interaction of two models in the social process of global AIDS governance and explores the possibilities of innovation in the social response to risk. The two moral regimes by which to cope with problematized situations in the contemporary world are conceptualized as the “center” and the “border”. The center promotes a normative discourse in the name of defending society, reifying order and pursuing cost-effectiveness in operations. The border undertakes exploratory social action guided by a specific idea of “goodness”. While the two approaches engage in continuous battles, with integration and penetration between them, in the case of people living with HIV worldwide, they were first degraded into a separated biomedical pariah population, and then were brought under the strict medical regime of highly active anti-retroviral therapy (HAART). This shift between abject exclusion and exceptional inclusion indicates the meta-structure of life governance in the contemporary world. China's border cities are key outposts of global AIDS governance that reflect how the institutional deployment of exclusion and inclusion extends from global to local. The “zuo aizibing” (doing AIDS projects) in Biancheng, a Southwest China border town, embody typically as well as uniquely the complicated “center–border” entanglement. Border-organized “infected peer groups” are embedded in the local official governance system, manifesting as “front-line foot soldiers” serving the center by facilitating a smoother integration of the city's HIV-positive population into the public health monitoring system, where they are disciplined to become docile medical subjects. However, such groups, in adaptable symbiosis with this normative deployment, have also been able to independently open up entirely new fields of social action, allowing a humanitarian vision to be mediated, “translated”, and implemented. Through the transmission of knowledge, affection, and vitality, such groups have freed their HIV-positive peers, otherwise abandoned by the normative logic of AIDS governance, from stigmatization and from being limited by disease and treatment, to start pursuing new forms of life. As a global social experiment, the border, as revealed by AIDS, has far-reaching implications for exploring the inclusive and open potential of society itself.
In the present context of globalization, human health and social security are under threat from major infectious diseases, and hence infected people are often isolated and treated as dangerous sources of infection. Particularly, among all major infectious diseases, HIV/AIDS has aroused public fear and vigilance because of the serious stigma of the disease. Sontag (1990: 121–122) pointed out in the 1980s that biomedical testing and treatment would create the possibility for a new class of lifetime “pariahs” that would be excluded from mainstream society. This is a prediction that has obviously been confirmed in certain societies (Guo, 2015). However, my fieldwork in Biancheng, Yunnan province, suggests otherwise.
On an autumn morning in 2016, I made a “field visit” with Director Li of the Center for Disease Control (CDC) and Yingle from Cherish HIV Peer Group 1 to a farmyard where ten women living with HIV were gathered. The purpose of this field visit was to conclude a UNICEF (United Nations International Children's Emergency Fund) microloan project with questionnaires covering the topics of their health condition, family members, financial status, suggestions for improvement of the project, and so on. Director Li, as an experienced researcher, actively and skillfully raised questions and developed guidance. 2 I also participated in the interviews, noting by their natural replies that the interviewees showed no reluctance to communicate with me, although they preferred to surround Yingle to chat with her like old friends. These easygoing and cheerful women did not avoid discussing their infectious conditions and even showed a deep familiarity with AIDS prevention projects. They expressed the wish to live with the identity of “people living with HIV” and continue their lives with strong wills.
However, it was not always like this. Several years ago, Biancheng was still one of the “worst-hit areas” for AIDS in China, and the entirety of the local society was shadowed with the intense atmosphere of the disease. In the past, I have heard numerous stories of how the infected gave up on themselves due to the stigma. At present, Biancheng has transformed from a “worst-hit area” to a “demonstration area”, according to official reports. The realization of this transformation is the result of the constant effort in “zuo aizibing” (“doing AIDS”) projects conducted by various departments over the past decade. On the one hand, in the national and international discourses of AIDS governance, this transformation is reflected in the changes in infectious disease statistics (enrollment rate, compliance rate, new occurrence rate, etc.), which serve as an indication of the efficient control of the threat to social stability and economic development caused by AIDS. On the other hand, for the infected, this transformation has meant being able to step out of the darkness and to live their lives positively. AIDS, the disease that once left them in abjection (Fang, 2020), is the very key that has led them into this seemingly natural and positive moral mentality. This was the very mental transformation that I witnessed in my fieldwork. In brief, this moral mentality is an outcome of disease governance, that is, of the intensive AIDS governance measures adopted in Biancheng.
The present study investigates the implementation process of this high-level governance and undertakes a retrospective analysis of the experiences of the governors and the governed. With the in-depth participation of the nation, the international society, and cross-border non-governmental organizations (NGOs), the development of the AIDS governance system in Biancheng has become one node in the normalizing logic of international AIDS governance, albeit with its own local particularities. 3
This paper adopts the terms “center” and “border”, although it should be noted that these are not geographical terms, instead, they refer to two moral predispositions categorizing specific practical interventions. The first part of this paper contributes to the critical analysis of morality-related theories and emphasizes the fact that two moral regimes, namely the center and the border, are co-existing, confronting and interacting with each other in the processes of change and becoming the contemporary world. The second part looks back to the construction of the “life-environment” in Biancheng, which went through a process beginning with the neglect of AIDS in public medical care to the positioning of AIDS as an emergency moral situation, and Biancheng's incorporation into the international AIDS governance system. The third part provides a brief description of the process of the development of the international AIDS governance system, in which exceptionally effective border powers have been in constant conflict with those of the center, with the result that that the center's governance logic has changed and been reversed. This is not to say that cooperation between the border and center does not exist, rather, a complex relationship between the two is maintained due to their conscious or unconscious “collusion”. The fourth part carries out a retrospective description of the period in which Biancheng was undertaking “zuo aizibing” projects, including the participation of actors at different levels, from the international to the grassroots. Although the absorption of the border into the center has become key to the AIDS governance regime, the social innovation potential of the border and the joy of life itself have been maintained and manifested in this process. The fifth part points out that the fruits of governance tend to be reaped and “formatted” by the center. Finally, the study further reflects on the entanglement of the center and the border in the contemporary history of governance practices. Sontag predicted the generation of the biomedical pariah as an invention of modern society, but she failed to realize the agency of the governed, as well as the impacts and transformations manifested by their life forms. These may be the realization of another prediction, by Rabinow, who pointed out that AIDS is an unfolding ambiguous social experiment (Fang, 2020; Rabinow, 1994).
Center normativity and border innovation: Two moral regimes in the contemporary world
When the whole society is put at threat and in uncertainty by risk(s), how will society and its actors react? This is the question raised by the anthropologist Mary Douglas and the political scientist Aaron Wildavsky (1983) in their book Risk and Culture. To be understood in a broad sense, the term “risk” in this context refers to shocks caused by the various transitions and changes in the contemporary world and experienced by societies and individuals. Based on discussions of the history and the present conditions of the United States, these two authors suggest two risk-facing logics with their own respective purposes and organizations, categorized as the center and the border. In their analysis, while the center focuses on the maintenance of norms the border pursues a certain “goodness”.
In recent years, research on morality has become an essential new direction in anthropology, concentrating around the discussion of how people deal with precariousness and uncertainty (Li, 2017; Mattingly, 2012). The work of Douglas and Wildavsky is also devoted to this topic from a different perspective. However, popular moral anthropology is inclined to present a moralized position on “ordinary ethics”, which have in fact been moralized by researchers. On the contrary, some anthropologists, on the basis of theoretical and practical concerns, have made further investigations into the forces that shape the structures, concepts, history and politics of everyday moral situations (Das, 2007; Fassin, 2012). This train of thought coincides with Douglas and Wildavsky's consideration of the operations of institutions, in which the center and the border are “regimes” composed of certain material bases and ideological and operational forms of institutions. The following discussion, starting from a reflection on anthropological epistemes and bringing in studies of governmentality in the contemporary world, traces this line of thought to continue the critical interpretation of the center and the border.
First of all, the focus on the center's normativity by Douglas and other researchers is an inheritance from Durkheim's sociological tradition, which equates morality to society. It was proposed therein that the process by which any individual in society is identified as a “human” is in fact a process of moral personhood maintenance embedded in cultural integration and social reproduction (Mauss, 1985). However, under normal conditions morality will disguise itself as society or culture until the occurrence of an “anomie” or social transition, which will make morality an apparent problem. The society represented by classical ethnography is a static one with a nearly perfect operational system; in modern anthropological studies, however, dynamics, transitions, and changes are unavoidable topics. This might be the reason for the gradually increasing popularity of moral anthropology in recent years. The underlying cause of morality's transition from a “natural object” to a “problem” is the fact that “society” itself is a product of the modern episteme. 4 Be it the “anomic” modern society of the sociological field of study or the harmonious primitive society in anthropological studies, the purpose is to re-establish order and stability in the turbulence of modernity from the perspective of the modern episteme. Knowledge production is embedded in the production process of this modern episteme.
However, this modern episteme usually neglects the presence of the nation and governance. Existing theoretical discourses typically refer to nation and society as in binary opposition (e.g. Taylor, 1990), which turns out to be a demonstration of the companionship between society and nation in the developing process of modernity. Society is the product of the imagining and practicing of the unity of the modern “community” in the condition of the modern state. 5 It is proposed by Meng Li (1999: 6–7) that the emergence of modern “society” requires a state with daily administrative capability to shoulder the responsibility to protect the welfare, health, and safety of its people. The state “has to protect society” while governmentality constructs society (Foucault, 1997, 2009).
The fact that governmentality has become the most important force shaping society is not only true in Europe (Foucault, 2009) but also in every place where the “state” has become the universal organizational regime (Sharma and Gupta, 2006). Modernity has witnessed a shift in and expansion of governmentality, from corporal punishment and discipline to subjective knowledge (Foucault, 2009). In the contemporary era, the “state” is present in society in subtle ways. The “ideological state apparatus” is present in all kinds of everyday and fundamental conceptual tools, such as school, whereas normative morality has become a tool of basic education or pedagogy for society and its residents (Althusser, 1971). 6 People's “cynicism” toward politics as well as their disobedience are general phenomena in the contemporary world. This is not “a weapon of the weak” (Scott, 1985) so much as a “cultural intimacy” between society and the state (Herzfeld, 2013).
Douglas and Wildavsky (1983: 83–101) have highlighted the key function of two social institutions, namely, hierarchy and market, in the regime of the center. Both of them are closely related to the state and governmentality, as the purpose of the state's attention on its people in daily administration is to maintain the existing social order and to pursue economic development. Through this kind of governmentality, the regime of the center operates according to a normative logic when dealing with risk. Due to the potential threat to public safety and social development, epidemic risks are always vigilantly monitored and guarded against. In addition, the risks discussed by Douglas and Wildavsky are restricted to the United States, while global risks have gone beyond national boundaries (including Douglas and Wildavsky's most commonly discussed risks: environmental damage and epidemics). Therefore, the center regime at the international level must be constructed by center regimes from various countries, within which the hierarchical order and the corresponding economic order are naturally present. The center regime at the international level has shaped the specific deployment of center regimes in different countries and regions worldwide. But no matter what kind of center regime is functioning, there is no possibility to completely resolve risk; for this reason, the center's counterpart, the border, is required.
Border practices are born from risk and have become organizational forms and acting powers in specific border situations of change and turbulence. The border can be temporal, pointing to rapid changes in society, or spatial, pointing to marginal or liminal groups. Certainly, these two features are likely to co-exist. Multiple characteristics of the border are demonstrated by Douglas and Wildavsky (1983: 102–151) through their discussion of American sects in history. Being dissatisfied with the Church's (the occupier of the center) explanations for certain social orders, these border-positioned sects developed their own theodicy to do self-motivated goodness. Public welfare volunteers in modern American society are their secular successors, in that they are trying to take action by reconstructing certain moral principles external to the center regime of American society. Examples include the equal rights movements of the 1960s and the contemporary environmentalist movement. The generalization of these border actions in America enables them to influence the center to an extent that even led Douglas and Wildavsky to call America a “border country”.
It goes without saying that doing good is not restricted to the United States, nor is it limited to historical sects or modern public welfare organizations. Rather, similar moral practices of goodness happen worldwide, in the past and the present. In the contemporary global vision, these border practices have become acting powers that surpass national boundaries. As forementioned, problems caused by economic development, such as environmental pollution, epidemics, and so on, are global risks of value uncertainty that cannot be solved by singular national center regimes or the center regime of the international society consisting of every country. This has created the conditions for a remarkably large non-governmental action space in which border organizations that were born from modern social problems have become crucial border governance regimes (Douglas and Wildavsky, 1983: 152–185; Qin, 1999: 143–167). For example, environmental protection can become an international justice movement that goes beyond boundaries, and cross-border humanitarian organizations that concentrate on helping disease sufferers can also directly offer help to their target groups by bypassing the state (Redfield, 2005; Ticktin, 2014).
On the one hand, these border organizations have the awareness to keep their distance from the center so that they can focus on more specific and significant welfare activities without being absorbed by the normative regime. On the other hand, the results show that some of the achievements of border practices can be adopted by the center since the former has the open potential for innovation, compared to the latter, which is conservative and closed. If the center is a centripetal force that creates and maintains order, the border is a centrifugal force that opens new possibilities by doing good. Thus we can view these practices of goodness as a self-governed social experiment conducted by various groups and, thus, what is worth investigating is how these practices influence the center and then how they change our contemporary world. 7
In addition, Csordas (2013) points out that more attention should be paid to evil in mainstream moral anthropology. According to him, the issue of evil is actually the potential mainstay around which the center and the border as two moral regimes can co-exist. First, the establishment of a norm is realized by naming and excluding the “abnormal”. In Douglas's words, those that threaten the stability of the structure become a dangerous pollutant and the social order can be restored only when a “scapegoat” is labeled and rejected (Girard, 1986). This is indeed the social mechanism of stigma, which safeguards the normal by excluding “stains” that are imaginable but invisible through the application of nomenclature (Shao, 2009: 116). From the perspective of public welfare, border practitioners set up an evil target in their minds (be it either the evil in religious discourse, the evil of environmental damage in the ideas of contemporary public welfare organizations, the evil of “structural violence” which leads to suffering, or the evil of illness, etc.) to enable their social actions of goodness (such as environmental protection and suffering relief) to make sense.
As the discussion focus shifts from the center's normativity to the border's problematized situations, the research perspective of anthropology has also changed from functionalism and culturalism to the observation and consideration of problematized social practices in particular social conditions. This is also the background against which moral anthropology came into being in recent years. It has started to become an important perspective for researchers, as social transitions, turbulence, and suffering have become a general premise in contemporary people's lives while goodness-guided border practices have spread worldwide. Faced with diseases and suffering, modern medical anthropology is essentially a kind of moral anthropology. Kleinman (1980), undoubtedly a representative of the center perspective, proposed that cultural patterns normalize pain experience, in opposition to biomedical norms. When it comes to morality as a practice of goodness, more complexity arises in medical anthropology, in which a critical anthropology of global AIDS is exemplary. Paul Farmer and the other forerunners of this field penetrate with an attitude of moral combativeness into present global political and humanitarian issues, and they have even promoted social actions in Global South countries through theoretical criticism (Farmer, 2003). 8 Researchers in the twenty-first century who are involved in the front-line practices of global AIDS governance are directly facing the moral implications of social actions while maintaining an attitude of introspection. Thereby, analysis can be made to see how the world is made up of ongoing moral actions, within which an orientation of critical moral anthropology has come into being (Fassin, 2012). As far as disciplinary norms are concerned, this public-morality-engaged medical anthropology is also a “border sect” whose border actions have significantly changed the center of the discipline and influenced the episteme of anthropology as well as how it situates itself in the world. 9
Up to this point, we can summarize the center and border as guidelines for the following discussion. In the modern world that is full of turbulence, the center and border are two systematic moral driving forces for the social governance of problematized situations. The center regime that is driven by normative morality is usually directed by the state and international official organizations in order to apply governance in the name of the “society must be defended” with “safety, stability and development” as their normative pedagogical discourse on the ideological level. The practical operation of their governing methods is mainly carried out through mechanisms of exclusion intended to solidify hierarchies, following the economic principle of cost-effectiveness. In the meantime, the motivating regime of the border is made up of, but not limited to, non-governmental public welfare volunteer organizations that undertake problem-specific exploratory and devotional social actions according to the guiding principle of goodness. We can view such border regimes as social experiments in group self-governance.
The present paper records and reflects on the AIDS governance process in Biancheng on the basis of the theoretical framework of the center and border, borrowing the comparative perspective of the anthropology of global AIDS. In the problematized situations of 40 years of global AIDS governance, the constant interactions and confrontations between the border and center have shaped the governance regime. But we have also realized that center and border are not fixed counterparts of the governmental and the non-governmental, that is, two seemingly separate actors. Instead, the logics of the center and border are penetrating each other, creating a more complicated relationship of entanglement in practice.
Concealing and revealing: The course of the “life-environment” of AIDS
In 1989, there were 146 people diagnosed with AIDS in the drug rehabilitation center of Biancheng (Ma et al., 1990). 10 This was the first time in China that such a large-scale AIDS epidemic had been detected. In the 1990s, although constant reports of newly infected patients were sent out from the quarantine station of Biancheng, the actual condition of the epidemic's spread was even more severe, while the exact situation of the spread of infection remained unknown owing to virus tests only being carried out in some specific drug rehabilitation outposts with no mandatory tests being given to spouses of drug users. Moreover, AIDS did not receive enough attention in epidemic prevention policy and public awareness at the time.
The complete prohibition of the drug and sex trades in China rendered the appearance of the local transmission of AIDS through blood and sexual behavior to be viewed as impossible. AIDS, as a foreign disease, was referred to as the “fly from the West” by the media. As in other closed countries, this attitude was an obstacle to the modification of public health policies in response to the epidemic (Hamers and Downs, 2003). As Sontag states, “there is a link between imagining disease and imagining foreignness. It lies perhaps in the very concept of wrong, which is archaically identical with the non-us, the alien” (Sontag, 1990: 136). In antiquity, the symbolic association between disease and otherness was a mechanism of social integration via the method of exclusion when facing crisis (Girard, 1986). But modern societies consider the foreignness of disease more as a political statement (Schmitt, 1985). In fact, this is a reaction that is commonly encountered across many countries against the background of increasing population mobility under globalization, to the extent that it has even become a commonplace institution- and basic governance logic and moral structure (Farmer, 2003; Fassin, 2001).
Before the twenty-first century, Chinese AIDS policy went through a transition from situating the causes of the crisis overseas and bringing a punitive attitude to domestic management to a combination of punishment and palliative intervention (Xia, 2005: 68–71). Although the AIDS epidemic in Biancheng has become notorious in the field of public health, there was insufficient public awareness and actual intervention. The deficiency of attention on the AIDS epidemic in Biancheng might have been the result of an unwillingness to cause adverse impacts on and hindrance to local economic growth. 11 At that time, drug rehabilitation centers were set up by the public security system to solve the problem of drug addiction caused by the geographical closeness of Myanmar. Public health only played a supporting role to drug prohibition.
Director Li, who was assigned to the quarantine station in Biancheng in 1992, and another senior doctor were the only two staff members who were working on AIDS prevention and treatment. What they could do was very limited, including making regular outpost testing reports to the appointed drug rehabilitation centers and paying occasional visits to the homes of drug users and HIV-positive individuals for educational and management purposes. Director Li told me about his experiences with complicated emotions, saying that he made these visits to the homes of AIDS sufferers by tractor with self-prepared meals and the guidance of the senior doctor. According to Director Li, it was not hard to see that what they were doing resembled the “down to the countryside movement” of the past, which was carried out by ethnic work teams who were responsible for frontier ethnic affairs. Similarly, medical and healthcare work was one of the breakthroughs made by ethnic work teams. The governing pattern of the ethnic work teams in bringing medical care to the countryside did not conform to the order of the center, instead, it was an exceptional enlightening and liberatory border practice in the early years of New China that popularized the knowledge of civilization and modern medicine among suffering “backward” people in borderlands, enacted by specialized work teams in a form that differed from regular administration (Fang, 2018: 278–279). In the 1990s, this border practice recurred on a smaller scale in the field of drug use and disease management.
Not only were there were no macro-level AIDS governance measures being implemented in the 1990s, but the epidemic had already spread in rural areas of Biancheng. The epidemic can be a window into social unrest and crises. In the wave of social and economic changes, the middle and lower-class rural residents were the most harmed by drugs and AIDS. To make matters worse, the gradual spread of AIDS coincided with the reform of the medical and healthcare system in China, which decreased the opportunity for access for rural residents who were unfamiliar with the modern medical system. In terms of the social and cultural impetuses for disease contagion, the infected are always the bearers of social inequalities, which can further marginalize these individuals and result in their suffering deeper harm in social life (Shao, 2007). Around the year 2000, a group of drug users and their spouses was detected with numerous death cases that, it was deduced, were caused by AIDS rather than drug overdose (Office of the China–UK HIV/AIDS Prevention and Care Project in Yunnan, 2006: 113).
In 2000, with the influence of the international society, Yunnan and Sichuan provinces witnessed the launch of the China–UK HIV/AIDS Prevention and Care Project, which selected Biancheng as one of the project sites, with Director Li as the local project manager. This marked a new phase in AIDS governance in Biancheng, in which the public awareness of “AIDS prevention” was gradually raised through publicity and mobilizations. During my fieldwork I observed that AIDS-related slogans covered the urban streets and every main road in rural areas. However, such large-scale publicity campaigns led to unexpected outcomes in the form of the manifestation of the “international propagation of AIDS stigma”. 12 As the local residents recalled, the intensity of publicity in the early 2000s was even greater, with highly alarming content that represented stereotypical views on AIDS internationally. They gave people goosebumps by showing images of emaciated AIDS sufferers (often black) as well as pictures showing instances of suppurating herpes on patients who suffered from disease flare-ups. Scientific knowledge was obscured by such terrifying images and the public refused to face the topic of AIDS. This kind of publicity conforms to the governing logic of the center which positions the infected as “others” who are excluded from normality; such horrifying pictures are an explicit reflection of the exclusionary norms of AIDS governance. Such publicity performs the function of arousing the alarm of common people so that the purpose of education and discipline is achieved. As is stated by Sontag, “every feared epidemic disease … generates a preoccupying distinction between the disease's putative carriers and those defined—by health professionals and other bureaucrats who do the defining—as the ‘general population’” (Sontag, 1990: 115). As the relevant images and discourses circulate in people's daily lives, language, similar to the disease itself, can acquire the features of infection and circulation (Das, 2007: 119). AIDS rumors and the AIDS stigma arose and spread in parallel with international public health governance measures. The stigma of AIDS is closely related to the international governance of public healthcare. 13 Douglas (1992) holds the opinion that society is inclined to lay the blame of risk and misfortunes on marginalized individuals and groups. In the practice of AIDS governance, such a “high-risk group” emerged due to governance itself.
Before the revealing of the local infectors, an AIDS “life-environment” 14 had been constructed owing to the disease's governance and its impact on the emotions and epistemes of the local society (Massumi, 2010). The national and international public healthcare system had created in the local crisis a “state of exception” 15 that required immediate governance due to the potential negative impact caused by the AIDS epidemic (triggered by an exceptional group) on people's health and the development and stability of border societies. After AIDS had become a socio-political problem in need of an urgent solution, various kinds of extensive governing projects were given exceptional priority to be carried out locally as so-called AIDS exceptionalism started to take shape (Benton, 2015; Moyer and Hardon, 2014). In 2003, the AIDS governance of Biancheng was completely embedded in the global system with the proposal of the “Four Frees and One Care” policy, the launch of the “comprehensive screening”, and the arrival of international projects. Therefore, the ins and outs of every practice can only be assessed when they are placed in the international context. The state of exception and emergency of AIDS governance not only re-stimulated and reinforced the center regime at the local level, but also brought in specific border ideas and techniques from the global to the local. As such, AIDS governance had already become a global “battlefield” where the conflicts and entanglements of border and center constantly occurred.
From the West to the Global South, from the globe to China: The border in action
In the 1990s, the foundation of the Joint United Nations Programme on HIV/AIDS (UNAIDS) symbolized the appearance of global exceptional conditions that positioned AIDS governance as an urgent public affair worldwide. This kind of global governing system was still dominated by the West and international organizations (such as the World Health Organization, World Bank, etc.) that reflect the normative logic of the center, which is to take exclusive precautions against specific high-risk groups in order to prevent the spread of the epidemic that would lead to further damage to the local society (and to international society) by controlling the source of the disease (Seckinelgin, 2008). In this center regime, certain groups of people are further stigmatized, and governance methods evoke the mainstream social imagination—that some dangerous groups undermine social stability and prosperity. To take it further, the scale of at-risk groups spread to cover the whole region. Consequently, a kind of “geography of condemnation” was developed (Farmer, 2003).
But those who are governed are not always the passive bearers of the center regime. In the West, inheriting the spirit of the equal rights movements, infected peer groups not only took actions to restore their names in a moral sense, but also participated actively in the fields of legal rights, drug R&D, and accessibility. The center regime was forced to continuously modify due to the actions taken by the grassroots organizations, while the infected were gradually given legitimate rights. Some of them were even permitted a role in discussions of AIDS-related medical and social policies due to their special identities (Epstein, 1996). In 1994, the concept of “greater involvement of people living with HIV/AIDS” (GIPA) was established in the Paris Declaration that resulted from the 1994 Paris AIDS Summit, signaling the border's official penetration into the center regime. Since then, the participation of the governed has always represented a border force confronting the center in AIDS governance (Barbot and Dodier, 2002). However, as the participation of the border became conventional practice, some organizations representing AIDS sufferers started to be absorbed into the regime as a part of the center, while other neutral ones remained independent and ambiguously cooperative with the center simultaneously. There were also some organizations that persisted in their marginal position while maintaining a posture of warning and confrontation when facing the center's normalizing regime (Lune and Oberstein, 2001).
As the AIDS epidemic spread in developing countries, another moral discourse from the border had become a power that cannot be underestimated in global AIDS governance. This discourse pointed out the necessity of providing humanitarian care and help to the infected as a “vulnerable group” that endured hardship deriving from inequalities in political and economic structures (Farmer, 2003). In the logic of this discourse, responding to the AIDS epidemic in developing countries is the moral responsibility of international society, especially developed countries. This moral discourse of the border not only endeavors to reverse the stigma of the infected, but also to force the center regime to make modifications in order to incorporate more humanitarianism and care in the normatively precautionary and exclusionary mode of AIDS governance. Based on this, some non-governmental cross-border humanitarian groups have become active powers of growing importance with their prioritization of “life value” functioning as the moral driving force for their social actions (Ticktin, 2014).
The late 1990s witnessed the discovery and implementation of highly active anti-retroviral therapy (HAART), which significantly raised the survival rate of the infected in the West. Thus, according to the humanitarian appeal from the border, to provide the infected in developing countries with anti-retroviral drugs became a moral imperative. However, the center regime did not agree with this life-saving humanitarian discourse, believing (based on the opinions of pharmaceutical companies and international public health experts) that it would be difficult to adapt the complex biomedical mechanism of HAART for the infected in “underdeveloped” regions. As a result, there would be no benefit, while also increasing the risk of drug resistance and leading to drug waste (Hardon and Dilger, 2011: 141–146). To answer this, several NGOs set up pilot experiments in some developing countries, proving that “premodern/underdeveloped” regions also have the ability to ensure the patient compliance necessary to demonstrate the feasibility of popularizing anti-retroviral treatment locally. In the meantime, the actions taken by grassroots organizations in developing countries not only resisted the drug monopolization of the international society and pharmaceutical companies, but also opposed the inaction of their own governments. Their actions received an active response from cross-border humanitarian organizations and AIDS patient organizations in Western countries and valuable victories have been achieved (Robins, 2009). As the center regime gradually accepted the life-preserving logic of the border the price of anti-retroviral drugs started to decrease. Generic drugs were produced by countries such as Brazil and India, and drug supply channels serving countries in the Global South were constructed by developed countries, the international society, and cross-border humanitarian organizations (Dodier, 2005). However, this did not mean that the center regime had made a complete compromise to humanitarianism, since mainstream medical discourse had been slow to accept that the risk of infection could be significantly decreased by reducing viral load in the infected through HAART (Quinn et al., 2000; World Health Organization, 2014). 16 Based on the principle that “prevention is treatment”, enhancing the availability of anti-retroviral treatments may not be an efficient investment, as a greater benefit can be achieved in terms of political stability and socioeconomic development through the disciplining of “high-risk” groups (Nguyen et al., 2011; Nosyk et al., 2014). Rather than adopting preventative and exclusionary measures, it is better to turn infected people into exceptions within society and implement exceptional restrictions. In this way, restrictive and normative control of this group through the medical system has become the key to governance (Mattes, 2011). Global AIDS governance is moving forward in the complicated intertwining of the center and the border. The promotion of universal access to HARRT in the name of life-saving humanitarianism has surpassed the conflicts of international politics to become an emergency global AIDS governance network with priority and autonomy.
There are different actors and approaches in the real-life actions of global AIDS governance. This refers to the two regimes of global health proposed by medical anthropologist Andrew Lakoff (2010). First of all, aid and intervention from the international society that is dominated by developed countries still exerts influence through the existing “nation-state” system, although the results are not ideal. This international governance has an inner contradiction: on the one hand, developed countries are making international moral investments in places that are far from their metropolitan territory. 17 On the other hand, they are protecting themselves and the international society through intervention and surveillance. Thus, there is an ambiguity between their essential normalizing position and their explicitly humanitarian attitude. Comparatively, a kind of humanitarian biomedicine is developed by non-governmental cross-border organizations (such as Doctors Without Borders), which crosses the boundaries between nations, classes, and groups and directly targets the infected by promoting cooperation between non-governmental groups and offering care and help to the infected. There are clear disparities between these two regimes on the basic principles and technical measures of healthcare intervention: for the former, drug supply is a “prevention is treatment” method that is exceptionally included in normative medical surveillance; for the latter, it is a moral undertaking which puts humanitarian aspiration into practice in saving lives. 18 The difference between the two is rooted in the intrinsic motivating moral logics of the center and the border that provide the bases for their respective actions.
In the process of increasing drug accessibility, Western infected groups, as representatives of self-governance, were generalized at the local level by cross-border humanitarian organizations as examples of non-governmental governing patterns (Misra, 2006). These grassroots NGOs have brought HAART to more HIV-infected people (Robins, 2009). What is more complicated is that, due to the significant results achieved by peer groups as well as the influence of GIPA, the center regime of international society has brought peer groups into their subordination, considering them to be flexible and efficient governing techniques and governance tools (Mahajan, 2008). Seemingly, the border has gained its access to the center, but this center-logic-dependent formal border has lost its unique action potential accordingly.
In the global progress of AIDS governance, the border and the center are continuously changing. Although they are not fixed terms, the advance of the border into the center may ironically produce the greatest tension in global AIDS governance. Under the sway of the new biomedical discourse of “treatment is prevention”, a new normative regime of the center has developed, giving impetus to multiple border forces. In this regime, infected people around the world have been included in a normative life-governing regime through the popularization of HAART. Even as their lives are extended, the governed are put under a particular living pattern and under medical surveillance (Benton et al., 2017). Therefore, they are included in society in an exceptional and disciplinary way and without hampering the social order and economic development. In this process, not only is there a driving force from the center, various border forces are also taking active participation, and patient organizations are also “sacrificing themselves” to jointly promote this new global life governance system that implements standardized control in the name of saving lives. Consequently, Sontag's prediction of “AIDS pariahs” is overturned, and a new form of global AIDS life governance is constructed by this exceptional inclusion whereby exceptional life-control is applied to a population that is excluded interiorly and included exteriorly. 19
The global promotion of treatment accessibility has provoked various life images in different regions. For example, due to the retreat of state power in some Eastern European countries, the circuits of survival and discipline are constructed by NGOs (Owczarzak, 2009). In sub-Saharan Africa where the AIDS epidemic is most severe, the task of anti-retroviral treatment promotion is shouldered by border powers that occupy their position outside the vulnerable national healthcare system, while a complex governing network is produced in the entanglement of and interactions between actors from local societies, states, international organizations, and transnational agencies (Sullivan, 2011). The infected in South Africa experienced “rebirth” after they were recruited to treatment projects, while at the same time, the normative value regime that is guided by biomedicine and neoliberalism has taken root quietly at the local level (Comaroff, 2007; Robins, 2009). The confrontation, entanglement, and reversal between center and border have infiltrated every power circuit in global AIDS governance. 20
In China, the border is always taking action, too. In the 1990s, some AIDS activists appealed to governments and all sectors of society to pay attention to the AIDS epidemic, to show respect and understanding to the infected, and to carry out relevant public welfare activities. In 2004, China started to offer free anti-retroviral drugs to patients with financial difficulties and cooperated with Global Fund to Fight AIDS, Tuberculosis and Malaria on AIDS prevention. This marked China's official accession to the global AIDS governance system, which includes the cooperation between Western countries and the international society as well as the flexible activities carried out by various transnational agencies (Gåsemyr, 2015: 615–620; Kaufman, 2012; Wu, 2010: 164–193). From the point of view of the center, China's AIDS governance is related to economic growth, social stability, and national security, and even to benefiting international society and humankind as a whole. 21 The infected are still a “high-risk group” that requires urgent normalization and control, but they are also a “vulnerable group” that needs care and help. In this way, the moral discourse from the border has been accepted and has spread to a certain extent. A pragmatic logic was revealed when HIV groups were introduced into China as an efficient governing technique. This logic points out the fact that the government can harness NGOs to achieve the largest social benefits with the lowest management costs. Therefore, attempts made in the field of AIDS governance can offer references for social governance on a larger scale (Xia, 2005: 68; Yu, 2011: 46–60). Up until this point, AIDS-related organizations in China started to flourish, with the remarkable development of NGOs in big cities, such as Beijing and Shanghai, and provinces experiencing higher rates of infection, such as Henan, Yunnan, and so on (Gåsemyr, 2015: 620–621; Han, 2010). 22
As Chinese social governance is dominated by the center regime, the need to establish an AIDS governing network in a state of emergency opened a significant space for border forces. However, as one insider said, the border force that benefited the most was actually LGBT groups in some cities, who gained access to survival spaces and resources in the name of AIDS governance. 23 That insider stated that “compared to urban groups, the rural infected are less educated and in need of more help and mobilization”. This is the background of Biancheng’s story that is to be told in the following section, but the details are very different from the opinion of this insider.
This section has outlined the global process of AIDS governance according to two health regimes that refer respectively to the normative governing mode of states and international society, as well as the grassroots projects of transnational agencies. From the transnational alliance of humanitarianism to the centripetal/centrifugal activities of HIV groups, conflicts and entanglements between the center and the border diffuse into every level and approach of governance. Important border concepts, such as to recognize the subjectivity of the governed and to offer care and support to those who suffer, are gradually occupying positions in the official system and becoming part of the mainstream discourse. But the key turning point in global AIDS governance was that, under the joint force of the border and the center, the “bio-pariahs” that were once excluded for the purpose of protecting the security of society are now exceptionally included through HAART, albeit while being disciplined and “normalized” in the name of humanitarianism. Meanwhile, while the center has always been dominant in China, a space for border forces has emerged through the state of exception and emergency of AIDS governance. This is a contemporary social history that is worthy of thorough retrospective analysis. In this process, Biancheng has become an interface where global/national and center/border powers are assembled to achieve a delicate balance at a specific point in time.
Biancheng mobilization: “Zuo aizibing”, the centered border, or the bordered center?
After 2004, Biancheng became one of the key outpost cities in global AIDS governance. These outpost cities are liminal spaces that are in urgent need of governance to reduce their risk to national and international society (Prince, 2014; Shao, 2011a: 18). Hence, an emergency governance system was set up in Biancheng that enacted a transition from the original exclusion of the infected to exceptional inclusion, using epidemiological statistics as indicators. The purpose of this was to turn this “high-risk population” into controllable bodies through the discipline of the medical regime and to place the abnormal in a unharmful social position that was simultaneously included and exceptionally separated.
This was a situation that was impossible to imagine several years prior. While Director Li and the senior doctor were once solely responsible for AIDS-related work in Biancheng, by the time of my fieldwork the available resources to complete relevant tasks had greatly expanded; in addition to the CDC, various governmental departments and institutions were also participating under the coordination of the municipal HIV/AIDS prevention office. “Zuo aizibing” was not only linked to the administrative assessment of local governments, but was also a high-profile task in border region development. The CDC, ethnic hospital, maternal and child healthcare center, and village health centers were components in the official Biancheng AIDS governance system, in which the CDC played the most important role and took on the largest number of specific tasks. With many years of working experience in AIDS prevention and treatment, Director Li became the manager of “zuo aizibing” and he made full use of opportunities to take part in international training programs to update himself with “advanced concepts”. Director Li perceived “zuo aizibing” as a personal opportunity and a turning point by which he found his way in a pressing situation. In fact, Director Li was also an important node that not only contributed to the smooth operation of the official governance system, but also to the steady introduction of border forces into Biancheng.
As various components of “comprehensive screening” were carried out, 24 Biancheng experienced a sharp increase in the number of identified infected people, bringing into being a formal “infected population” for the first time (Jia et al., 2010). However, such screening was only possible after the AIDS epidemic had been declared a state of emergency and exception. Which public health governance methods are most appropriate and to what extent center or border governance forces should “intervene” in individuals in a state of emergency has long been a focus of the academic field. Critical medical anthropologist Scheper-Hughes (1993) compared the AIDS governance systems in Brazil and Cuba, finding that adherence to freedom and human rights in Brazil allowed the epidemic to cause greater damage, with the disadvantaged population suffering the most. On the contrary, Cuba has achieved better results by putting the infected under centralized observation in sanatoriums. In terms of the implementation of drug treatments, a comparison of AIDS governance in Brazil and China is worthwhile. Although Brazil was the earliest developing country to offer anti-retroviral drugs, the neoliberal government healthcare system and NGOs went so far as to exclude “worthless” marginalized groups from inclusion unless they voluntarily degraded themselves to the status of treatment-controlled bodies, despite their being the groups that were bearing the brunt of the suffering caused by the epidemic (Biehl, 2007). Compared to Brazil, there is no doubt that the administrative capacity of Chinese grassroots governance was stronger, and the official goal was to bring all infected people into the AIDS governance system, or, to put it in Director Li's words, “to identify every HIV[-positive person]”.
In the AIDS “life-environment” of Biancheng, the infected were in fact an afterthought. It seems that the people being detected as HIV positive were stigmatized automatically through medical reports. During my fieldwork, I met many members of staff and medical personnel in AIDS projects who would always show an attitude of distancing and defensiveness in front of HIV-positive people, consciously or unconsciously. Some of them deliberately performed a gesture of sympathy toward this “vulnerable group”, or “people living with HIV” (PLWH) in the global AIDS discourse. From this it can be seen that the real-life isolation is produced and maintained even though the popularization of anti-retroviral drugs has colored the center regime with humanitarianism.
Nowadays, Yingle devotes herself to her work with HIV/AIDS peer groups actively and enthusiastically. However, she also experienced the utmost darkness in her life ten years ago. At that time, the newlywed Yingle and her husband were diagnosed with HIV. Contradictorily, the more afraid one is of exposing one's secret, the more normally one deliberately performs in public. A “cheerful mask” is worn in order not to “reveal one's true identity in front of the family and society”. However, the atmosphere in private becomes so clouded with fear and hopelessness that one cannot even breathe. After Yingle's husband passed away due to opportunistic infections, upon returning to her natal home she finally exposed her “identity” to her family. Some relatives isolated her and were defensiveness, just like “people ordinarily do with ‘this disease’ in local society”. In the accounts given by Yingle and other HIV-positive people, “this disease” is a very commonly used term, especially when they discuss how their families and the society refer to them. “This disease” and “people with this disease” are tacit collective significations which push them into abjection. Yingle and other infectors said that they were once not only physically ill, but also mentally unwell. However, this was not as a result of their own defects, but the effects of the AIDS “life-environment” of the local society.
The process of being diagnosed with HIV is a tragedy for the infected, who experience “abandonment” due to the contemptuousness and rejection of the public discourse. They become the “biomedical pariahs” predicted by Sontag (1990) and live in fear of death. Douglas (2007) indicates that from a normative perspective “polluters” are always considered to be evil by common people. In an epidemic situation, the infected emerged as a concrete source of pollution. “It may be a general trait of human society that fear of danger tends to strengthen the lines of division in a community” (Douglas, 1992: 34). The infected in Biancheng were internally isolated or even ostracized by their families. They felt as if they were being driven into a “dead zone”.
The “zuo aizibing” work in Biancheng was intended to bring this exceptional group of HIV-positive people into a medical system of anti-retroviral treatment to ensure social stability and development. But AIDS was still an incurable, fatal disease in the public discourse at that time. This might have been the result of public propaganda that concentrated on prevention and warnings regardless of the fact that there were already accessible therapeutic drugs. The associated moral implications continuously suggested to the public that the infected belonged to a group that was “abnormal”, and thus which was threatening to the “normal”. This is an exact reflection of the normative logic of “exceptional inclusion” in global AIDS governance. The infected were placed in a status of fear and self-abandonment and as such they rejected contact with outsiders. Their rejection was especially categorical toward the government officials through whom their identities might be exposed to the public. Their defensive acts even included releasing their dogs to chase and attack officials who visited them. In this deadlock, NGOs functioned as icebreakers embedded in the AIDS governing system as a key hub.
The state of emergency and exception of AIDS governance allowed spaces for the foundation and development of NGOs in Biancheng. As an interface between the official system and NGOs, Director Li had always wished to promote the growth of NGOs in order to improve governance outcomes with the help of non-governmental powers. Transnational agencies, such as Save the Children, World Vision, and Oxfam, arrived in Biancheng to carry out projects and help set up local NGOs motivated by humanitarianism to alleviate the pain and isolation of the infected. The Chinese project office of Save the Children relocated from Hong Kong to Kunming, Yunnan province, in 1995 as it focused on AIDS governance in Biancheng and began supporting to local NGOs from 2000 ( China Social Welfare , 2006). The Center for the Development of Women and Children in Biancheng was the first local NGO and is still influential today. The first head of the center, Fang Qi, was a doctor in the Maternal and Child Healthcare Center in Biancheng who, touched by the mission and vison of Save the Children, voluntarily chose to depart from the center to the border by dedicating herself to the mission of NGO work. It is noteworthy that the first members of the local NGO community were not disadvantaged women or sufferers of AIDS but those whose socio-financial and educational status were above the median level. Perhaps it was their unique situation—having enough education to understand a foreign humanitarian philosophy, but also their disadvantaged social position as women which made them more sensitive to the harm suffered by specific groups of people in the midst of socioeconomic change—that led them to pioneer local NGOs and open up a field for the practice of goodness (Fang, 2019: 73–74).
HIV peer groups were developed in Biancheng under the supervision of local NGOs. In late 2004, Thomas, a celebrity in domestic AIDS circles, was giving a speech on knowledge about AIDS and anti-retroviral drugs in a hotel meeting room in Biancheng. The audience, apart from Director Li and Fang Qi, was made up of more than 10 AIDS patients who were summoned in various ways. Thomas is the founder of AIDS Care China and is a key figure of border power that has emerged in AIDS governance in China. He, together with Director Li and Fang Qi, was observing the audience as he delivered the speech. All the recipients were peasants who could only half understand what was explained by Thomas; they still showed a look of fear and shame due to “this disease”. But some of them seemed to have understood something as they raised questions for the expert on stage.
After the meeting, Director Li and Fang Qi asked two patients in the audience who were active compared to others in the meeting to stay for a little longer. After some small talk, Fang Qi asked: “Would you like to work with us, to come and help more infected people like you?” Those two individuals, named Linda and Henghan, later became the first two members of the first HIV peer group, Fernleaf. Although Director Li and Fang Qi represented the government and the NGO community respectively, they shared the same foresight: the AIDS projects in Biancheng were about to face a very large number of rural infected people and a peer group of infected people, also from rural areas, would be extremely helpful. But the essential intention of Director Li differed from that of Fang Qi, as the former aimed to look for a more efficient way to include infected groups into the medical surveillance system while the latter concentrated on helping more people who were suffering. Later, more peer groups were set up, and with the guidance of transnational agencies and local pioneer NGOs they were imbued with an ethos of public service and humanitarian goodwill from the outset. This is not to say that they directly catered to the universal humanitarian discourse, instead, they focused on the specific situations of infected people in Biancheng through the medium of local NGOs.
Every HIV-positive person in Biancheng is given a serial number based on the chronological order of their being diagnosed. When I arrived in Biancheng to do my fieldwork in 2015, some HIV sufferers still remembered the serial number of their companions in the “battle”. She remembers to this day how it was when she was told by the CDC to take the infection test. She felt uneasy and shameful, as if she was judged by peculiar looks around her. She almost got lost in the labyrinth-like CDC on her way out when a young lady named Caiyun showed up. At that time, Caiyun had her hair cut short in a smart style and the expression in her eyes was firm but gentle. She held Yingle's hands and smiled: “I am also an infected person”. 25 It was the first time that Yingle had heard someone voluntarily reveal their identity as HIV positive in such a peaceful but comforting tone. Yingle told me that she almost cried in Caiyun's arms. Caiyun shared her experience with Yingle, saying that she had also seen with her own eyes the disease outbreak and death of her husband and she had lived through the frightening days in which she was “interpellated” because of “this disease”. Caiyun had experienced the disease outbreak herself, walking side by side with death. Later, Caiyun joined Fernleaf HIV Peer Group, wishing to help more fellow HIV sufferers. Recounting her experiences over and over gave Yingle opportunities to get off her chest the emotions that she had suppressed for over a year. She started to participate in the peer group activities regularly and she later received anti-retroviral treatment. However, rumors were rife in local society at the time, and she often suspected she was being treated like a guinea pig in an experiment. In the peer group activities, Yingle started to acquire knowledge about AIDS and anti-retroviral treatment while she willingly took drugs under the therapeutic regime with Caiyun's encouragement. Gradually, her health improved, and Caiyun became her best friend. One year later, she agreed without hesitation when Caiyun called her to ask whether she would like to work in the peer group. Her wish is to accompany other HIV-positive people out of darkness to “live a good life”, just as Caiyun did for her.
This is a social process that involves many actors: from Fang Qi and her fellows being motivated by the transnational humanitarian discourse to open up a new space for NGO activities in Biancheng, to Fang Qi asking the initial group members “Would you like to work together?” Or Caiyun's smiling to Yingle, “I am also an infected person”, and then Yingle's commitment to helping more people. There may still be a top-down transfer of values here, but perhaps it can also be seen as a kind of relay “translation”. The abstract idea of goodness is translated and transformed through the relay: local infected people's power of autonomous action is aroused, opening up a considerable amount of energy for border action. These humanitarian discourses are a fresh perspective on the world in a life of fragility and uncertainty brought about by socioeconomic change. The infected people who join grassroots peer groups, because of what they have suffered in their bodies and lives, are particularly able to echo this moral discourse and engage in the work of intellectual, emotional, and vital relay transmission.
The infected at that time were scattered throughout the villages of Biancheng and they were almost always first approached by peer groups when they were diagnosed. Members of the Cherish peer group visited HIV-positive people in their homes by motorbike all year round, in rain or shine, covering all villages, including the hard-to-reach ones. They had heart-to-heart talks as companions with these newly diagnosed sufferers and helped them understand the disease. Furthermore, their introductions to the therapeutic effects of anti-retroviral treatment imbued their fellow sufferers with a new moral episteme: “this disease” is neither a death sentence nor a reflection of moral corruption, instead, it requires people's positive attitude to deal with it actively. This initial contact is key in AIDS governance. In the following “medication” process, it is inevitable for infected people from rural areas to feel confused in the face of numerous governmental departments and medical technologies all of a sudden. Many show great fear and unwillingness to undergo frequent blood testing. The antiviral regime is a complex matter, involving not only medical protocols that are complicated in themselves but also other practical aspects such as food and nutrition, intimacy, and so on. Such regimes can constitute a reshaping of the life orders of HIV-positive people in rural Biancheng. After systematic training, members of Fernleaf take their residence in the AIDS department in ethnic hospital of Biancheng to explain biomedical knowledge to local patients in language they can understand. In addition, they also aid the patients to rearrange their lifestyles so they can incorporate the pattern of daily treatment. Like the role played by HIV groups in other developing countries, the group members in Biancheng have become local experts in the translation of biomedical knowledge (Kyakuwa, 2009).
To this day, many infected people still come to the Fernleaf office after coming to the ethnic hospital to collect their antiviral medication, and they meet their peers and talk to them. Sister Na, whose home I visited with the peer groups, was a regular visitor to this office. She talked to me, a “volunteer” from the “big city”, while she was taking a short rest after she had finished the consultation, health tests, and drug collection in the hospital. Sister Na said that while she could finish the whole procedure in the hospital on her own smoothly, her relationship with the medical care staff who were assigned to “zuo aizibing” work was only “businesslike”. The only people who could “make her feel at home” as an infected person were those from the peer group. She nodded to Henghan who was working in front of the computer and said that she knew every group member I mentioned, such as Caiyun and Linda. She said: “They walked me through all this from the start!” Among these group members, the most influential one to her was Wangxi, who came to her bedside as a companion when she was helpless and upset because of an opportunistic infection and eased the atmosphere with a good sense of humor. Wangxi made her feel that the ward was not as scary as before, so she found the courage to continue life. Other groups provided financial aid to her in times of personal life pressure. Later, group activities offered relief when she was uneasy about the disease progression and drug regimen. Thus, Sister Na would stay for a while every time she came to collect her drugs to chat a little bit with Wangxi. This habit remained after Wangxi quit Fernleaf. Nowadays, Sister Na manages farming affairs on her own while she raises her daughter, who received educational funding from the Chi Heng Foundation, “I would say I am living at my own pace”. After the chat, she threw away all the packaging of the anti-retroviral drugs and wrapped the pills in a black plastic bag. 26 When I saw her out, she smiled and said: “You didn’t notice, did you? I took the drugs for the morning when you were talking to Henghan”. With those words she got on her motorbike and waved goodbye with aplomb.
Peer groups not only provided financial and medical aid to Sister Na, but also encouraged her and people like her to become positive and open-minded instead of becoming closed-off. Thanks to their involvement she was able to navigate the official system consisting of the hospital and CDC and feel at ease in her daily life. Her overall living status was even better than before she was infected, reflecting the transformation and vitality that AIDS had brought to her unexpectedly. Likewise, with the help of peer groups, many HIV-positive people in Biancheng's rural areas were able to enter the medical system smoothly and “survive”, and were finally not bound by “the disease” and not completely confined by medical control, but were even able to live their lives with more confidence and energy than before.
In Biancheng I saw that AIDS governance was working well, and that this was in fact the result of the “infiltration” of border practices. Grassroots peer groups have in fact done the most crucial “face-to-face” work in AIDS governance in Biancheng, helping to smooth the transition of the constantly growing infected population into the surveillance and governance systems of modern medicine. Meanwhile, grassroots peer groups ease the conflict between the sympathy that may arise from officials toward a “vulnerable group” and the normative ostracism of “polluters”. 27 As the most painstaking and morally intense on-site work was undertaken by peer groups, officials only needed to undertake more procedural affairs. No wonder that Director Li thought that NGOs had transformed the infected from “a heap of loose sand” to a condition of “organic solidarity”. Although he did not understand the academic framework behind these concepts, this metaphor vividly outlines the practical situation, in which numerous individuals gradually gathered to become a manageable group of the governed. By creating sufficient space for the independent actions of peer groups, Director Li succeeded in promoting the integration of global AIDS governance in Biancheng, not only answering the moral appeal to care for vulnerable groups and incorporating border power into the governance system, but also achieving the purpose of normative control most cost-effectively.
Looking back on this emergency period of “zuo aizibing”, it seems that both the government and the NGO community were dominated by a normative center moral logic that introduced an exceptional population into the medical system, both to prolong their lives and to ensure the security of society by monitoring and regulating these lives. China's strong administrative capacity indeed played an important role in this regard, with rapid local mobilizations to carry out major emergency screenings, bringing all those infected under surveillance as far as possible. This would be almost impossible for other countries and regions, especially those developing countries that are severely suffering from the AIDS epidemic.
What makes Biancheng distinctive from other areas in the country is that border power outside the center system is also closely involved in this normative governance, and may even be said to be embedded in the governance process playing a pivotal role. It is also from this perspective that these border practices are slightly ambiguous, ostensibly following a humanitarian vision, when in reality they may also be in the service of national and international health surveillance (Lakoff, 2010: 75). In fact, in China it is tacit knowledge that both transnational and grassroots civil society organizations first seek cooperation with government when carrying out projects. 28 In the context of Biancheng, seeing that NGOs could help the government to achieve various statistical targets and “tasks”, Director Li and other officials have deliberately liberalized the space for grassroots organizations to operate autonomously, and it is in this space that these organizations exercise their own unique moral practices.
The daily volunteering work of peer groups in Biancheng thus demonstrates a special local manifestation of center–border entanglement and penetration in global AIDS governance. For both the center and the border, the peer groups in Biancheng are the “front-line foot soldiers” in the mission of AIDS governance (Martin and Waring, 2018); on the one hand, they have participated in the implementation of a public healthcare surveillance network as unofficial volunteers; on the other hand, they have allowed the transnational humanitarian vision to take root in a more “authentic” way. Some scholars have argued that these grassroots volunteers are used and even “exploited” by global health governance (Maes et al., 2015). Maybe they are indeed in a position of inequality, but, just as in the great changes to Yingle's whole being after her meeting with Caiyun, and Sister Na's growing enthusiasm under the care of Wangxi, voluntary HIV peer group work is rather about dedication to one's peers and the transfer of knowledge, emotions, and affect, which also manifests the vitality and meaning of the volunteers’ own lives (Fang, 2019: 85–86).
Perhaps this is what makes Biancheng truly unique in global AIDS governance: although it is embedded in the center, the border still harbors considerable autonomous energy. In this regard, NGOs do more than making the process of entering the medical system and becoming monitored and tamed bodies smoother and less harmful to the infected person. Besides this, the dedication of the peer groups has saved the infected in Biancheng from falling into the situation of constantly being interpellated by the stigma of AIDS, and from being reduced to nothing more than “exceptionally included” biological life itself; instead, peers pull each other out of the darkness and live bravely as “people” again. While it seems that the border forces are “moving closer” to the center regime, in fact they are quietly changing the substantive connotation of governance in the process in a “depoliticized” manner. The border is not only a tool used by the center to fulfill the tasks of normative governance, but also, and more importantly, opens up a whole new field of social action, in which the life forces of those who were abandoned by the previous normative governance are stimulated. It is their pursuit for a new and better life that creates new forms of social action, which contributes to the transformation of society itself in a more tolerant and active direction.
Normalization in the post-therapeutic era
More than a decade of governance has brought about an era in which “AIDS has been brought out of the shadows” (that is, every HIV-positive person has been identified), as Director Li puts it. The AIDS epidemic in Biancheng has generally been brought under control, as most HIV-positive people are being monitored under a therapeutic regime. But, at the present stage, AIDS governance is still an important task that should be evaluated by epidemiological statistical data. 29 In recent years, as the various governance measures have gradually stabilized, “zuo aizibing”, a set of methods that was once mobilized in a state of exception and emergency, has become a routine arrangement. 30 With regular governing procedures still dominated by blood testing and medical discipline, the various attempts made by self-proclaimed border-rooted public welfare organizations are undoubtedly more targeted as a result. However, it seems that such public welfare organizations are facing the risk of being exhaustively extracted of their essence by the rigid framework of control that entails.
Although the external system environment is constantly changing, peer groups in Biancheng are still trying to encourage HIV-positive people to make a further attempt at “positive living” after they have “survived”. “Positive living” is the current slogan proposed by global AIDS governance after the popularization of anti-retroviral treatment. But, in practice, this slogan is restricted by a regime of medical discipline that aims to shape the infected, based on a template, into a life-form that is limited by disease and treatment (Benton et al., 2017). Nevertheless, my observations in Biancheng show that the first challenge faced by the infected is to survive, without which the matter of how to live cannot be considered. The emotional connection and recognition developed in the process of helping one another to survive provide a concrete possibility for the infected to hand-in-hand look for a way to live positively. Future anthropological research must engage further with the “global experiment” in which the world's first generation of AIDS survivors uses their survival and their lives as a vehicle to explore new forms of life from the border (Fang, 2020).
Closing and opening: The governed in the contemporary world
As medicine has become “embedded” in everyday life, how is the modern body subjected to the medical gaze? How does governmentality take on different shapes according to state–society demographic categories? And how will the “treated/governed” make compromises or act involuntarily? Medicine, that is, knowledge and technology for the disciplining and production of the body and life, is a key field in which the experience of modernity is shaped and modern social life unfolds. Three decades of AIDS governance in Biancheng have focused on the regulation of life for an exceptional population, but the moral practices of those who govern and those who are governed in this process are perhaps even more enlightening.
The 1980s AIDS epidemic in Biancheng, which was caused by the illegal drug trade from northern Myanmar, can be seen as an embodiment of the social suffering and moral uncertainty resulting from social change. Nevertheless, the epidemic in Biancheng was initially overlooked due to AIDS being represented as a foreign disease, as well as the major focus being on economic development. It was not until the 21st century, with the arrival of the China–UK HIV/AIDS Prevention and Care Project, that AIDS gradually entered the public consciousness, generating a life-environment of fear and rejection toward AIDS in the midst of mass propaganda, wherein the AIDS epidemic was seen as a social problem, destructive to social stability and prosperity and in urgent need of exceptional governance. In 2003, as the “Four Frees and One Care” policy was proposed and international AIDS projects were extensively developed, Biancheng was officially placed in a state of exception and emergency—“zuo aizibing”—and became an attention-attracting outpost city in the global AIDS governance network. In the face of the global AIDS epidemic, because economic development and social stability are regarded as more important matters, many countries have paid too little attention to public health and intervention has come too late. According to Douglas and Wildavsky (1983), social order and economic development are the two major logics of the center regime. In this context, health governance might be consciously neglected as a potential impediment to social order and economic development until the larger-scale damage caused by an epidemic becomes apparent. Only in this moment can the center regime realize the fundamental importance of health governance, since the well-being of the population provides the basis for more sustainable productivity.
From a global perspective, the gradual emergence of the AIDS governance regime is a complicated process in which the border and center constantly entwine with and penetrate each other. It includes the participation of governments from the West and the Global South, the international community and official international organizations, the medical field and pharmaceutical industries, transnational humanitarian organizations, grassroots AIDS organizations, and various other forces (such as the humanities and social sciences, including anthropology). The development of the border has forced the center to absorb many heterogeneous elements from the border, the most important of which is the idea of caring for the sufferers and recognition of the subjectivity of the governed. One of the key outcomes of this historical struggle is the flow of anti-retroviral drugs from the West to the Global South. But it is also an opportunity for the center regime to innovate and to further expand worldwide, albeit with a more humane veneer. Here the global AIDS governance system has undergone a fundamental reversal, with the condition of the biomedical pariah population as the governed moving from abject exclusion to exceptional inclusion through the rules and control of the medical system. It was at this point that the border and the center shared the same goal of universal access to anti-retroviral treatment, which led to the use of medical humanitarianism for international AIDS governance, with the border working together with the center to advance global AIDS governance, and ultimately to the extension of the medical discipline from health institutions to social space.
Perhaps most worthy of consideration here is the “human condition” of the modern world that has made this unprecedented global system of exceptional governance possible. It was predicted by Sontag (1990) that a precondition of AIDS governance would be the creation of a biomedical “pariah” group and the abject exclusion of this group from society. The exclusion of such pariahs becomes a prerequisite for their subsequent exceptional inclusion. But beyond the sequential time structure, is such a process of isolation, reversal, and inclusion not also the very structural logic of modern governance? Following Agamben's (2005) line of thought, we are all in a potential “state of exception” in which each of us is named, categorized, and gazed at in a particular way; in fact, this state of exception does not make us exceptional, and at any moment we can be reversed and ostracized, reduced to “bare life” (Fang, 2020), and can be reversed again and exceptionally included, internally excluded while externally included, subjected to particular body–life discipline and transformation. The complexity of AIDS lies in the fact that this modern “meta-structure” of life governance has surpassed the boundaries of sovereign states to create a global population of exception. And in addition to the national and international systems of governance, there are civil humanitarian forces acting transnationally that seek to rescue, intervene, and shape these bio-pariahs, a community that itself acts, either in confrontation or in complicity, which generates the politics of the governed. It can be said that a global experiment of life governing is happening with various powers intertwining, combining, and echoing one other.
Since the turn of the 21st century, the local deployment of Biancheng's AIDS governance system has effectively repeated this whole process of abject exclusion to exceptional inclusion of the infected in the global regime. Exceptional populations are created by governance, followed by more “humane” inclusion, and thus by admonition and discipline. This might be the exact point that deserves discussion: is such a meta-structure of governance inevitable for modern life? In the process of exceptional inclusion after the reversal, the border force outside the official system, especially grassroots HIV peer groups, have become the key to governance. They have been mobilized to volunteer as “front-line foot soldiers”, spreading the gaze and intervention of the medical system throughout Biancheng, from urban areas to remote hamlets, such that the target population is disciplined to become docile medical subjects. Public health and humanitarianism connect various governance technologies to jointly construct the biopolitics of exceptional populations and the body politics of individuals within them.
A trend in current anthropology is the critique of governance, including the governance regime of the center as well as the various kinds of “complicity” with the center of border organizations. But as Foucault (2015) reminds us, in modern society, governance, like the famous “iron cage” of reason, is also an inescapable everyday reality. James Ferguson (1990), the anthropologist who once strongly criticized the state and NGOs, has also stated in recent years that, in fact, these targets of criticism are not that monolithic and solidified, instead, there are many specific techniques, methods, and ideas that can be adopted to promote the advancement of society (cf. Ferguson, 2010; Yarrow, 2011). Following Ferguson's thought, it is more important for us to examine through fieldwork how governance is specifically deployed and what complicated relationships of entanglement are produced in the process of deployment and operation so that we can record and interpret this process in more detail.
A different landscape can indeed be seen in the process of AIDS governance in Biancheng. Director Li of the Biancheng CDC is not only an enforcer of a normative logic, but is also deeply influenced by the various border moral discourses of different eras. With him as the interface, the border force in Biancheng has full autonomy to operate. In the participation of the border force in the governance of AIDS in Biancheng, an otherwise abstract humanitarian vision is mediated and translated through the “middle” (Merry, 2006), using the lives of people as a medium, and manifesting in the transformation of the lives of local PLWH. We have observed many examples in which life translation and transformation happens in relay: for example, the humanitarian vision of Save the Children (a transnational discourse) touched Fang Qi (the forerunner of the NGO community in Biancheng) who asked Henghan and Linda (the first two infected peer group members in Biancheng) if they would “do something together”, while Caiyun (one of first peer group members) invited Yingle (a subsequent peer group member) to join, and Wangxi (peer group member) enjoys daily sisterhood with Sister Na (a peer who helped her to restart her life). In this relay of affect between people and people, emotions and objects, words and actions, creative transformation is stimulated from life to life, and the energy and vitality of life emerges. 31 Alongside the life forms that are excluded or disciplined, one can see the brilliance of the human being coming alive and living again.
There might be too many lucky and aleatory factors, but the process of its coming into being can still be traced, just as was pointed out by Alexis de Tocqueville: “Previous facts, the nature of institutions, the turn of minds, the state of morals, are the materials with which are composed the unforeseen events which astonish and frighten us” (Tocqueville, 1893). 32 It also echoes the prediction of Rabinow (1996) that AIDS has brought into being a new social experimental field, in which the powers of the center and the border reflect and associate with each other to constantly produce new social facts. From abject exclusion to exceptional inclusion, the dominant logic of global AIDS governance has always been the limitation and closure of life, while the border power is constantly acting to reshape the configuration of the center regime. In this process, the AIDS community, which was originally the object of governance, is using itself as a route to forging new possibilities of life and opening up new spaces for social action. To be Biancheng-specific, the urgent, local, social condition provides a stage for the center and the border to play their roles respectively while the experiences and changes of people like Director Li and Fang Qi sow the seeds of border practices. Thus, in the moral condition of emergency mobilization, a particular practice of goodness can institutionally co-exist with the normative deployment of AIDS governance. The excluded and exceptionally included groups of governed people are simultaneously disciplined and transformed, effecting a change of mentality and the emergence of their own life force. From the perspective of this ongoing contemporary social process, the unique form of interaction between the center and the border might be used for reference in other governing conditions. Even if they are embedded in the center regime of AIDS governance, border forces still have ample space for independent action, and border practices have multiple levels of “translation”, which in the process inspire and generate the autonomy of infected people. In this context, the actions of pursuing innovation and change at the border are meaningful.
Perhaps this is where we can make reflections on the world in which we are living: what kind of governance forms we are facing? What possibilities and limitations are created in the entanglement of the center and the border? What potentialities are contained in life itself? The “critique” proposed Foucault (2015) can be found in the courage of perception and action, in the unwillingness to be (over)governed in such a form, in such a name, by such a means, and instead wandering off and self-creating at strategic junctures. This is perhaps the resilience inherent in life itself, and an important source prompting the border to open up new possibilities for action, and thus also influences the renewal and transformation of the center. While normative governance in the contemporary world has long been an inevitable prerequisite, the inclusion of border forces and ample space for their autonomous activity can, on one level, help the center regime to better enact normative governance and safeguard social security, and on another, perhaps more important, level, open up the possibility of reshaping society itself, that is, transforming society into a more open and vibrant form by affecting and unleashing the life forces of exceptional people.
Footnotes
Declaration of conflicting interests
The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
This paper is sponsored by the Study on Life Reconstruction of PLWH, Youth Program of the National Social Science Foundation of China (grant no.:22CSH083) and First-class Discipline Construction and Characteristic Development Guidance Special Funds for the Central Universities of China (grant no.:SLE00212004).