Stigma: An Ethnography Of Mental Illness And Hiv/aids In China

An Ethnography of Mental Illness and HIV/AIDS in China

Jinhua Guo

• Publisher: WCPC
• Year: 2016
• ISBN:
  9781938134821
• Topic: Social Sciences
• Subtopic: Cultural & Social Anthropology
• Index: Social Sciences

Based on two and a half years of fieldwork in China, this book examines the cultural genesis and social mechanisms of stigma related to mental illness and HIV/AIDS in China. It also explores the bio-politics on stigma through detailed description of social exclusion experienced by people suffering from mental illness or HIV/AIDS and by systematic comparison on stigma between the two illnesses in the Chinese context. Through the comparison, this book describes the micro socio-dynamic process of stigmatization in the local Chinese context, highlights the identity transformation accompanying the illness trajectory the patients and their families have lived through, and ultimately connects Chinese society and its community-centered social value system and institutional arrangement to the stigma associated with mental illness and HIV/AIDS.

Based on two and a half years of fieldwork in China, this book examines the cultural genesis and social mechanisms of stigma related to mental illness and HIV/AIDS in China. It also explores the bio-politics on stigma through detailed description of social exclusion experienced by people suffering from mental illness or HIV/AIDS and by systematic comparison on stigma between the two illnesses in the Chinese context. Through the comparison, this book describes the micro socio-dynamic process of stigmatization in the local Chinese context, highlights the identity transformation accompanying the illness trajectory the patients and their families have lived through, and ultimately connects Chinese society and its community-centered social value system and institutional arrangement to the stigma associated with mental illness and HIV/AIDS.

Readership: Readers who are interested in learning more about the cultural genesis and social mechnism related to mental illness and HIV/AIDS in China, and how they connect with the Chinese society and the social values in general.
Key Features:

• One of the first stigma studies on mental illness and HIV/AIDS in China
• One of the first ethnographies on the living conditions of people suffering from mental illness and HIV/AIDS in China
• Combines social and cultural construction perspectives on stigma

Chapter One

Theoretical reviews and critiques

Psychological and Social Psychological Models

Psychology has played a prominent role in studies of stigma. Goffman has been widely referred to as the first to conceptualize stigma within social psychology and sociology. In his classic book — Stigma: Notes on the Management of Spoiled Identity (Goffman 1963) — Goffman defines stigma as “an attribute that is deeply discrediting” (1986:3), which causes a spoiled identity and results in the reduction of a person (or group) “from a whole and usual person to a tainted, discounted one” (1986:3). In his view, discrediting attributes, such as mental illness, physical deformity, and socially deviant behavior, spoil the identity of subjects and make them “not quite human” (1986:5). Goffman’s view has shaped the way later scholars understand stigma, “stigma comes to be seen as something in the person stigmatized, rather than as a designation that others attach to that individual” (Link and Phelan, 2001). In the same book, Goffman primarily focuses on how normal persons respond to the stigmatized and how the stigmatized manage self-presentation in daily life in order to cope with stigmatizing situations. Without considering broader social context, Goffman limits stigmatization in a generalized individual perspective of social interaction. The process from discrediting attribute to spoiled identity and onto subsequent consequence — how a discrediting attribute, as part of personal characteristics, spoils the whole identity — is far beyond his interpretation of the discrepancy between social expectation and reality, or normality and deviation. The questions left by Goffman are what makes a discrediting attribute in a society and how such a discrediting attribute lead to a spoiled identity.

Jones et al. (1984) reformulate a social psychological view of stigma. They substitute mark for Goffman’s concept of discrediting attribute. “Mark is our generic term for perceived or inferred conditions of deviation from a prototype or norm that might initiate the stigmatizing process” and a discrediting mark makes a person markable (1984:8). Jones et al. also identify six dimensions of stigma: concealability, course, disruptiveness, aesthetics, origin, and peril. Yet the real advance they make, in my view, lies in that they relocate stigma in the context of social interaction and relationship. “The marked person may or may not be stigmatized. To mark a person implies that the deviant condition has been noticed and recognized as a problem in the interaction or relationship. To stigmatize a person generally carries a further implication that the mark has been linked by an attribution process to dispositions that discredit the bearer, i.e., that spoil his identity” (1984:8). In their view, it is “impression engulfment” accumulated in social interaction that drives the marking process into “the more devastating realm of stigma” (1984:8). In this sense, Jones et al. bridge the gap between “discrediting attribute” and “spoiled identity” with a process of impression engulfment. But, in actual world, stigma does not always result from impression engulfment formed in face to face interaction. For example, public stigma exists and remains even without face-to-face interaction between normal person and deviant individual; instead, many people do not have any personal contact with mentally ill persons or HIV/AIDS patients. For these people, such deviant individuals exist as an imagined community living somewhere, but stigma exists and remains. In this sense, social interaction is not a necessary factor for the formation of stigma. In addition, Jones et al. try to generalize stigmatization. They write, “Such relationships [of stigmatization] are neither rare nor esoteric. We have all participated in them, either as the deviant or as the normal partner” (1984:1). It is insightful to point out that stigma is a common social phenomenon, in which everyone is possibly involved, because everyone has experience of being marked and marking others. However, as they say, mark does not always make stigma. Jones et al. seem to confuse mark with stigma. This confusion reduces stigma into mark, which apparently does not do justice to those who have the most painful experience of being stigmatized. In a sense, Jones et al. generalize the meaning of suffering. Being stigmatized is not just about being seen or treated differently but unfairly and even inhumanly in many cases. The way Jones et al. generalize stigma obscures the boundary between suffering caused by mark and suffering caused by stigma.

Alonzo and Reynolds (1995) suggest that stigma is a social constructive/interactive phenomenon, “not static but emergent and something that can be said to be undergone and experienced” (1995:313), and it “is expansive, pervading all corners of one’s life space and identity” (1995:313). Alonzo and Reynolds define the stigmatized as “a category of people who are pejoratively regarded by the broader society and who are devalued, shunned or otherwise lessened in their life chances and in access to the humanizing benefit of free and unfettered social intercourse” (1995:304). Based on Goffman’s definition of spoiled identity and Jones et al.’s multidimensional concept of stigma, Alonzo and Reynolds list the components of stigma related to HIV/AIDS: Deviant behavior, individual responsibility, immorality in terms of religious belief, contagious and threatening realities, undesirable and unaesthetic death, and misunderstanding by lay community and negative view from health care providers. They point out that stigma has usually not been considered as changing and emerging over the course of a single illness, even though it has been generally recognized that the nature of stigma varies across illnesses (1995:313). Hence, they raise a concept of stigma trajectory, describe how persons with HIV/AIDS experience a stigma trajectory over four phases of the disease course (at risk, diagnosis, latent and manifest state), and demonstrate how stigmatizing experiences are affected by changes in the biophysical dimensions of HIV/AIDS. Alonzo and Reynolds’ stigma dynamics is based on disease dynamics; however, they neglect the involvement of broader social context in the process of stigmatization.

Link and Phelan (2001) conceptualize stigma in the perspective of social cognition. They bring in the concept of power and point out that stigma is entirely dependent on social, economic and political power. They identify five interrelated components (labeling, stereotyping, separation, status loss and discrimination) and propose that stigma comes into being when the five components co-occur in a power situation. Link and Phelan define power (social, cultural, economic and political) as a crucial factor that determines whether or not labeling, stereotyping and cognitive separation result in serious discriminatory consequences. However, Link and Phelan seem to understand power as an existing structure and pay no attention to the fact that power can also be reproduced any time. It may be true that lower-power groups have no chance to stigmatize higher-power groups in some situations, but that does not mean that stigmatization will not happen in higher-power group. Link and Phelan’s understanding of the contribution of power difference to stigmatization is limited by their static view of power. Stigma is not just a result of power difference but also a source of power difference.

Stigma studies in social history

Besides social psychology oriented studies, social history is another important field where stigma theory has been written. Gussow (1989) explores the transformation of stigma related to leprosy in the historical context, which makes a fundamental difference to social psychology’s writings about stigma. Gussow writes the history of leprosy stigma in a changing context framed by colonial encounter, religious thoughts, popular beliefs, and national policies. In his book, the history of leprosy stigma is related to a human history of relating physical unsightliness and disgustingness to backwardness and moral uncleanness in the soul, and a history of stigmatizing particular race (Yellow peril) and territory (oriental leprosy). As leprosy changed from a hereditary disease to a germ based disease, its implication altered from a punishment on a morally unclean race to a serious threat perceived by normal population; at the same time, the role of people with leprosy transformed from the bearer of stigma to the carrier of stigma, and the meaning of space also transferred from the guarantee of safety to a container of danger.

Watts (1997) attributes stigmatization of epidemics to western construct and the expansion of imperialism. Taking leprosy for example, Watts points out that there is a big difference in the attitude toward leprosy between colonists and colonials. In his view, the discovery of other cultures does not constitute a reflection of colonists on their own culture and the knowledge they assumed; instead, cultural difference becomes evidence of the distinction between the civilized and the barbarous. “Central to the thinking of western workers in leprosy before 1980 was the idea that civilized people everywhere shunned lepers; any cultural group which didn’t behave in this way was barbarous or at least semi-civilized.” In this sense, stigma is the evidence of being the civilized while the barbarous do not stigmatize. Watts further notes that this also applies to rural medieval Europe, which even suggests that stigma is nothing but a product of power relationships. Yet Watts seems to believes that stigma related to leprosy is absent in some cultures simply because of no fear for the disease. It may be true in the case of leprosy, but he apparently turn to use culture rather than power relationships to define stigma. Moreover, not all power relationships are brought by the colonists into the colonies; power relationships have also existed in many colonized cultures before the colonists invaded.

Sociological perspectives

More recently, Parker and Aggleton (2003) argue that stigma studies are facing serious conceptual limitation and even no definition while dictionary definitions and common sense definitions are widely used without serious reflection. Most stigma studies, in their opinion, are simple reproductions featuring a social cognitive focus and individualistic emphasis started and encouraged by Goffman. These studies seek to understand stigma in highly emotional terms and focus on stigmatizing attitude that is, as generally assumed, caused by misunderstandings, misinformation, beliefs and attitudes of perceived stigmatizers. Parker and Aggleton believe that these problems have misled and reduced current intervention programs on stigma into giving correct information, increasing tolerance, empathy and altruism, reducing anxiety and fear, increasing contact and helping the stigmatized acquire coping skills. To move beyond these limitations, Parker and Aggleton bring in a sociological emphasis on the structural dimension of discrimination, which was raised by Marshall (1998), and reframe stigmatization and discrimination as “social process that can only be understood in relation to broader notions of power and domination” (2003:16). Parker and Aggleton try to relocate stigma in a context framed by culture, power, and difference. They recognize that “stigma plays a key role in producing and reproducing relations of power and control” (2003:16) and focus on “how stigma is used by individuals, communities and the state to produce and reproduce social inequality” (2003:17). In the end, they raise the concept of political economy of stigmatization and social exclusion. Parker and Aggleton improve Link and Phelan’s definition of power by acknowledging power/domination as a product of stigmatization. They primarily focus on the role played by stigmatization in producing and reproducing power relationships and social inequality. In other words, they are more interested in social, cultural and political appropriation of stigma than stigmatization itself. Parker and Aggleton ground stigma in broader social context, which is a promising direction. However, they may study stigma but divert to another and end up in academic appropriation of stigma: the real object of stigma studies is likely to melt away in the context of culture, power and difference and to be replaced by the discourses of power and domination. In that case, stigma turns out to be a newfound raw material for the reproduction of academic discourse on power. The new direction showed by Park and Aggleton is promising, but it will not help much if we jump onto the topic of power without hesitation and without reflection its limits.

Anthropological views on stigma

Anthropological efforts of exploring the meaning of stigma can be traced to Mary Douglas’s analysis (1994) of minority risks. Douglas defines stigma as the practices of “moralizing danger” (persecution of moral deviants in the name of dangers) — a strategy for exclusion and rejection. She focuses on the condition in which the stigmatized are living, intends to detach stigma from the stigmatized themselves and relocates it in broader social context. Taking witchcraft and leprosy for example, Douglas sorts out the mechanism of social rejection: libel, imputation of immorality, and accusation of causing damage.

Medical anthropologist Arthur Kleinman calls for attention to the cultural meaning behind stigma associated with mental illness and other diseases in his The Illness Narratives (1988). To quote his words, “a disfiguring deformity and the bizarre actions of florid mental illness stigmatize because they break cultural conventions about what is acceptable appearance and behavior, while invoking other cultural categories of what is ugly, feared, alien or inhuman” (1988:159). He points out that “stigma helps to define the social identity of the group” (1988:159) and acceptance of the stigmatized identity makes patients feel shame in their interactions with families and health professionals. For stigma associated with mental illness in China, he writes, “The stigma of mental illness is so powerful that it attaches not only to the seriously mentally ill but also to their families” (1988:160). Kleinman suggests that there is a difference in the social genesis of stigma between China and the United Sates. In his view, in Chinese context, the collapse of social network caused by mental illness is the main reason that people with mental illness are stigmatized; in the United Sates, the reason is the socially perceived individual incapacity caused by mental illness. In his What Really Matters (2006), he points out that, during the Cultural Revolution in China, people outside of the “red” sectors were stigmatized as class enemies because of their “black” family background, such as businessmen, homeowners, landowners, liberal intellectuals, and members of other political parties. Stigma caused “restriction of living conditions” and restriction on the opportunities to build one’s own life and career as one wants (2006:86).

Farmer (1992) analyzes the accusation and blame associated with AIDS epidemic in Haiti and proposes that sickness is the result of structural violence and behind the discrimination against people who have HIV/AIDS is a strong stigma against marginal groups. His research reminds us of the stigma against outsiders, immigrants, and inside members who have contact with outsiders in the face of infectious diseases, as Gussow mentions in his study of leprosy. Both Gussow and Farmer reveal that stigma has much to do with whom to blame and accuse in the face of threat and danger. By defining sickness as a result of structural violence, Farmer suggested that stigma related to the sickness is also caused by structural violence. Based on research in Brazil, Abadia-Barrero and Castro (2006) found that “structural violence in the forms of poverty, racism, and inequalities in social status, gender, and age fuels children’s experiences of stigma”, they proposed “structural violence as the framework to study stigma” (2005:1219). Castro and Farmer (2005) stated that the current definition of stigma has not been “grounded in a broader biosocial understanding” and is “often desocialized — decontextualized from larger social processes that are both historically rooted and linked to persons and processes that are not visible to the survey researcher” (2005: 53). They proposed “structural violence as a conceptual framework for understanding AIDS-related stigma” (2005:54). Fassin (2007) also depicted AIDS patients’ illness experience in the historical and political context featuring social inequality. Biehl (2005) described people with mental illness and HIV/AIDS in Brazil who were regarded as ex-humans living in a zone of social abandonment.

Based on the concepts of local world and illness experience developed in Kleinman’s research, Yang et al. (2007) identify stigma as a moral experience by which to understand both the stigmatized and stigmatizers. They state that “stigma exerts its core effects by threatening the loss or diminution of what is most at stake, or by actually diminishing or destroying that lived value.” They further bring in the Chinese concept of “face” to highlight the moral dimensions of stigma. Through their efforts, stigma has been relocated in the Chinese local life world and can be examined in the local context shaped by cultural meanings and local moral practices.

The Myths of Stigma in China

In China, stigma did not attract much public attention until the Chinese government defined HIV/AIDS epidemic as a life and death issue to the state. That is to say, it was HIV/AIDS epidemic that forces the country finally to start paying attention to and considering about the issue of stigma. Yet only stigma related to HIV/AIDS has been concerned so far. As HIV/AIDS stigma has been increasingly recognized, both mass media and academic discourses tend to attribute stigma to traditional cultural construction, lack of disease knowledge, and lack of sympathy due to the dramatic social transformation.

1. Cultural construction

It has been widely assumed that the Chinese culture features abstinence, family values, and hesitating about speaking of sex. Many scholars believe these factors are the main sources of stigma related to HIV/AIDS since the disease is still linked to sexual deviance among the general population in China (Shi 2004; Chen et al. 2004; Li et al. 2005; Cao et al. 2005; Liu 2005). In their opinion, the Chinese people generally assumed that only immoral behavior causes HIV/AIDS infection, even though a great number of people contracted HIV/AIDS through drug abuse and blood selling in China; hence, stigmatizing sexual deviance is the source of stigma associated with HIV/AIDS, which means stigma is a result of cultural construction. However, this point of view often stopped here as an explanation of stigma’s cultural genesis and could not go further to make a point about how to contribute to anti-stigma campaign. Although many scholars agreed that discrimination against sexual deviance is the source of stigma related to HIV/AIDS, none had questioned the pervasive negative attitude toward sexual deviance in the Chinese society. They either endorsed this attitude or would not take the risk to question it because they would be considered morally incorrect to do so. Therefore, this explanation often went nowhere but turned to seek help from other explanations.

Research conducted in Yi minority area was a typical example (Hou et al. 2004; Jiarimuji 2007). Researchers claimed that neither the idea of sexual deviance nor the negative attitude toward sexual deviance existed in Yi culture, which led to the absence of stigma associated with HIV/AIDS in Yi ethnic group. Considering the fact that drug abuse and lack of knowledge of HIV/AIDS were both common in that area, researchers sighed that, without stigma related to HIV/AIDS, this epidemic was going to make this group suffer more. Research of this ...