Stigma, Contagion, Defect: Issues in the Anthropology of Public Health
Veena Das, Ph.D.
Johns Hopkins University
The concept of stigma gained currency in social science research first through the work of Erving Goffman. Much of this research has, therefore, been framed by his interests in questions of micro social processes within which the self is created and maintained. Goffman applied the term (negative) stigma to any condition, attribute, trait, or behavior that symbolically marked off the bearer as “culturally unacceptable” or inferior with consequent feelings of shame, guilt and disgrace. He distinguished between three types of stigma – associated with abomination of the body, blemish of individual character, and with membership of a despised social group. The common element among these three types was, for him, the notion of a spoilt identity and its management in social situations through stances such as concealment, defiance or irony. In considering this concept and its relevance for issues in public health, I shall ask whether we need to place this concept within a family of concepts – e.g. that of contagion, defect, and disability, in order to give it greater cross-cultural relevance. Although stigma may manifest itself most clearly in what is at stake in local moral worlds we need to also ask how the processes of global programming and national policies are implicated in processes of production and amelioration of this condition. Let me first start with the way that notions of stigma come to be linked with other related concepts, such as that of contagion and defect within local moral worlds.
Production of stigmatized subjects: the connections between body-selves
Although Goffman was resistive to the differences between the three types of stigma that he identified, the unifying concept of a “spoilt identity” and its management, loaded his analysis towards a highly individualistic rendering of the subject – the individual appears in his analysis as the sole bearer of value. Since agency is conceived in the form of resistance to collective representations, the concept of culture comes to rest on the notion of shared set of values and representations with rather less attention to the nuances through which culture is in fact embodied or actualized in individual lives. This pays less attention to forms of collective action on the one hand, and the way in which the contests over values are shaped by concerns of everyday life. I shall suggest that social scripts produce a hyphenated relation between norm and its transgression and that the notion of domestic citizenship may be useful to see how families may mediate between the collective level of social response to conditions of stigmatized disability and the individual life trajectories. Recent ethnography offers interesting examples to show how the immediate community within which the domestic is embedded (be it kinship or neighborhood) becomes the world within which family has to confront ways of disciplining and containing contagion and stigma. This in turn, yields startling revelations about stigma associated with disease, disability and impairment as located not in (or only in) individual bodies but rather as “off” the body of the individual within a network of family and kin relationships. It is useful in this context to consider the different types of stigma in relation to the configuration of domesticity rather than only individual agency and the implications for policies on public health.
Stigma, Aesthetics, and the Importance of Face
An examination of the genealogies of the ideas of defect show how defective and stigmatized subjects were historically produced on the intersections of various kinds of norms – especially those of femininity and normalcy. For instance, Campbell has argued that that contingent discursive inscriptions of “defect” could imperil the life projects of female subjects even in the absence of any functional disability or impairment of the senses simply because of the way that diseases were seen to mark the individual female subject. She gives the example of Eighteenth century European women whose small pox scarred faces were rendered as “damaged” and who were then assimilated to other stigmatized and damaged subjects. A recent study by Weiss of newborn infants in Israel who were abandoned by parents because they were “appearance-impaired” though they did not suffer from any functional disabilities points to the conditional character of parental acceptance of stigmatized subjects. Her analysis shows that parents felt that their social lives would be thrown into peril because of their impaired infants – even when persuaded by social workers to bring such infants home for short periods of time, they ended up hiding them in dark corners of the house because they wanted to “protect” their other children from contact with an impaired sibling. What is remarkable in Weiss’ account is not that parents expressed despair or even hostility, but that all other emotions such as hope, sorrow, or regret were censored out of their narratives. Thus the tyranny of norms of appearance that stigmatized facial defects seems to have thrown these infants out of domestic citizenship into the domain of the state as the only sphere in which their rights including rights to life could be defended.
In order to understand this story, however, we would have to read it along with other stories in which parents and caregivers negotiate norms, form associational communities to learn and provide support and act in the public domain to influence state policy and science. In these cases the family appears to form a protective envelope around the child and caregivers repeatedly contest the collective representations that would assimilate such children to stigmatized subjects. The recent work of anthropologists and those engaged in science studies from a user perspective provide important examples of what Rabinow calls “biosociality” i.e. the forming of associational communities to influence state policy and science. However, this does require what some have called “bio-capital,” referring to the capacity of a group to use social capital for dealing with biological conditions. In some of my own work on this subject, I have shown that while the attention to associational communities calls upon the individual as the subject of a liberal political regime, there is another sphere of sociality relating to the politics of domesticity, which operates outside these domains. The presence of stigmatized conditions, in the latter domain is seen as a matter of connected body-selves in which family may be pitted against the kinship group or local community to try to contain the stigma to the individual body by separating the stigmatized individual and confining him or her to various practices of social exclusion. While in such cases families may not have the “biocapital” to engage with state and science in the way described by Ginsburg, Rapp and Rabinow, they do need to use other resources of the state to confront and defeat the social pressures generated by local communities. I have elsewhere given the example of a Hindu Punjabi families who risked their social capital in order to find a sexual and reproductive future for their daughter stigmatized by a facial disfigurement by aligning themselves to the state and claiming the rights promised in such legislative actions as the Civil Marriage Act. I am therefore wary of assuming a sharp separation between the local communities as repositories of the moral and the state as a source of rational policy, for it seems to me that it is not in individual institutions (e.g. family and community or the state and bureaucracy) but in their alignment that resources to address problems of social exclusion resulting from stigmatized conditions may be found. As we saw earlier we cannot treat the domain of family as that of unconditional parental acceptance but nor can we treat the state as uncontaminated by social norms regarding stigma. Rather it is in the way that new patterns of sociality around biological conditions emerges through an alignment of domesticity with the state that we can find salutary examples of the way in which the social exclusion resulting from stigmatized conditions has been contested.
Body Autonomy, notions of danger and shame
While illness narratives of persons with disability generally deal with the feelings of damage and low self-esteem as a result of the loss of the autonomy of the body, in the case of stigmatized conditions there is a far greater weight placed on the feelings of guilt and shame. Consequently a big question that looms in the narratives of stigmatized illnesses is the question of innocence. Writing on his experience of disability, Robert Murphy wrote, “Disability is not simply a physical affair for us; it is our ontology – a condition of our being.” Borrowing the metaphor of the primal scene from Freud, he argued that any confrontation of people in which there is some great flaw leads to feelings of guilt and shame. This, for him, was related not only to the social opprobrium of the others, but also to the subjective feelings that the body impairment is a punishment for repressed, elusive and forbidden desires. Thus stigma became for him, not a byproduct of disability but its very substance. On the level of social relationships the disabled person presents a counterpoint to normality – Murphy’s bitter lament was that the very humanity of the disabled person is made questionable.
It seems to me that Murphy’s acute analysis captures the important point that the changed body image in stigmatized conditions seems to trigger broader fears of violation of sexual norms and hence dangers to a moral universe. Some support for this can be found in Bruin’s analysis of the discursive formations around the condition of leprosy in Tamilnadu where she found that the major part of the stigma of leprosy arises because of a fear that the stricken person has violated sexual norms such as that of incest or the sexual and reproductive norms of caste hierarchy. It is important to note though that stigma seems to be associated not with the disease as such but with the bodily deformities that come after the patch stage if the disease remains untreated. The person afflicted with the leprosy, however, has to begin “reading” the disease right from the beginning -noticing symptoms and devising strategies of concealment. Patients have described their fears that if their disease were to become known they would be cast out of the moral community because of the presumption that the deformity of the body was a punishment for infringement of sexual taboos. The entire discourse of anxiety that surrounds the stigma of deformed bodies thus is about reduction of sociality, exclusion from moral community as well as subjective feelings of guilt and shame. Being cast out of the social community coupled with a diminished sense of worth reduces the capability of the afflicted person to seek help even when this is in objective terms easily available.
It is in this context that we can see the great anxiety reported in the case pf stigmatized diseases with questions of “innocence.” In a study of leprosy patients in Delhi and in Kanpur Dehat in Uttar Pradesh, Surabhi Tandon reports that patients worry enormously about what kind of moral taboo they could have violated. She found that the predominant claim on the part of patients was that the illness was not a result of any moral fault and that if the illness was indeed a punishment, then it could only have been because they had inadvertently broken a social norm. However, Tandon also shows that intricate patterns of domestic and village politics entered the decisions of patients on whether they could continue to live within the same moral community or whether it was necessary for them to move out and to form new communities. However, it was the visible changes of the body and the stereotypes about patients having no fingers and toes, open wounds, fallen nose bridges, etc. that were read as “evidence” of the moral transgressions rather than the disease itself. With greater awareness about the role of multidrug therapy in curing leprosy and reconstructive surgery, even in areas with endemic leprosy such as Kanpur Dehat, the aspect of stigma became much less pronounced in the discussions with patients and their caregivers. This should warn us not to reify “culture” to assume that there are a set of unchanging values that inform local worlds for medical technology can make a decisive difference in how a disease is culturally perceived.
Stigma, silence, and the geography of blame
If stigmatized conditions lead patients and their caretakers to conceal their disease then this has serious consequences for both the health of the individual and the containment of infectious diseases for the population. It was mentioned earlier that bearers of stigmatized diseases are seen as a great danger to the community because of the assumptions that they have somehow violated the moral taboos, especially those on sexuality. This leads to feelings of guilt and shame. Obviously then diseases that directly relate to sexually tabooed behavior bring questions of guilt and shame much more to the surface. However it is not only individuals who are targeted as the bearer of stigma and blame in the case of sexually transmitted diseases but there is also a political geography of blame that comes to arrange the world in terms of “guilt” and “innocence.” The case of sexually transmitted diseases as well as AIDS in recent years provides telling examples of the way in which stigma of various kinds comes to be configured together in informing the public discourse on stigmatized diseases.
The first decade of the twentieth century was a period of intense concern with sexually transmitted diseases and the appearance of the social hygiene movement in North America. It is interesting to observe that not only in popular discourse but also in the biomedical system, a distinction was made between “venereal insontium” and the venereal disease of the innocent versus the venereal disease of those who were held guilty because of sexual misconduct. Allen Brandt argues that this distinction had the effect of dividing victims into those who were deserving of medical support and sympathy and others who were not, because they were guilty of sexually promiscuous behavior. It is not surprising to see that the latter category slides into stereotypes, fuelling a fear of new immigrants, urban populations and blacks. The assumption of guilt led to the most pernicious violation of the civil rights of groups identified as guilty sources of this disease. There is an uncanny resemblance to the processes through which similar stigmatization occurred in the case of AIDS in the last two decades of the same century.
In the initial years of the North American epidemic AIDS was widely termed as the “gay plague” – the discourse on the disease was hooked into the cultural concerns with sexual morality and especially with homophobia. Because of the rich cultural response by the gay community, at least in important urban centers in North America, the taboo on silence was broken. Yet the very power of this cultural critique of homophobia may have served to draw attention away from other forms of discrimination that the anxiety on AIDS brought to the fore.
Susan Sontag claimed in 1988 that in North America AIDS evoked less pointed racist reactions than in Europe or Soviet Union where the African origin of the disease was much more stressed. In his influential work on AIDS and accusation Paul Farmer pointed out that as early as 1981, members of the Haitian community denounced the racism inherent in the stigmatization of Haitians qua Haitians as “AIDS-carriers”. Through a careful analysis of the popular media and scientific representations in this period, Farmer shows how the discourse on AIDS was tied up to questions of immigration with a strong denial of the evidence that many of the Haitians who were reported to have brought in HIV infection into the country were likely to have contracted it after their arrival here. Just as in the case of syphilis earlier, there was stigmatization of high risk, marginal groups so that in many public pronouncements there were powerful assumptions about culpability and guilt of these populations.
Questions of guilt and innocence seem to haunt other instances in which the question of HIV infection has been addressed. In a little appreciated corner of the epidemic there has been a controversy of those patients with hemophilia who were infected with contaminated blood. As early as 1983, an article in New York Times Magazine referred to the disease as if it were more “poignant” when it attacked nonhomosexuals then when it attacked homosexuals. In recent hearings on patients infected by contaminated blood products, the collective narrative tried to carve out a space of innocence from which patients could separate their own affliction from those whose AIDS was blamed in the popular culture on personal behavior such as unsafe sex, or IV drug use. The very process of fighting stigma in such cases reaffirms the way in which personal affliction is made to fold into the stigma of belonging to marginal groups.
There are other contexts in which ideas of innocence and their counterpoint – notions of blame – have been used to open up other kinds of suspect moral spaces. Thus, for instance, just as there is a discourse of the geographical origin of AIDS in North America and Europe that is hooked into discursive formations on race and racism, so there is a discourse in non-Western countries that reverses this geography of blame. For instance in the popular representations of AIDS in India and several other non-Western countries, the epidemic was attributed to the moral degeneration and the lax sexual morality of the West. This allowed even Government representatives and scientists to claim in the early nineties that AIDS would never be a problem in India because Indians were protected by a rigid and puritan sexual morality. Even when the problem was grudgingly acknowledged in the late nineties, popular conceptions of AIDS continued to link it with either marginal groups such as sex workers or with “Westernized” women from the feminist movement despite mounting evidence of the high rate of infections among monogamously married women whose plight till recently was completely ignored.
Scholars concerned with public health discourse and critical epidemiology have repeatedly pointed out that notions such as patient’s beliefs have often led policy makers and biomedical practitioners to “blame” the patient for failure to comply with medical regimes. I hope this analysis shows the intricate connections between the public and the private domains in addressing problems of stigma. While the importance of stigma and the consequent social exclusions in local moral worlds is very important to document, it is equally important to realize that threats of new diseases create anxieties that can be expressed through a political geography of blame in the popular and scientific discourse.
The fear of contagion
The notion of stigma and contagion are, of-course theoretically distinct concepts – the first refers to the experience of being marked by a condition that sets you apart and the second to the potential for a condition to be transmitted from one to the other – but in the everyday life of communities these two concepts tend to slide in each other. Even in the case of a disability such as quadriplegia resulting from a neurological disorder, Murphy noted that social encounters were fraught with danger because “people acted like it is catching.” Murphy experienced it as a contamination of identity. As I have stated earlier, though, the stigma of disability, impairment and body disfigurement is not treated as an individual affair in societies that place less importance on the individual as a locus of value – instead it is treated as a matter of connected body-selves. This does not mean that we can neatly divide societies into individual-centered societies and socio-centric societies as some have suggested. Rather it is a matter of seeing how stigmatized diseases lead to the drawing of boundaries within the domestic and its immediate environment of kinship and village or neighborhood community. The case of tuberculosis presents an important example of the way that notions of stigma and contagion slide into each other in the villages and urban neighborhoods in low-income countries. This, I argue, has implications for the way that the biological course of the illness comes to be related to its social course.
Susan Sontag’s analysis of illness as metaphor shows us the romantic notions regarding the character of TB patients in nineteenth century Europe and the ambivalence with which such patients were viewed. While elite discourses on tuberculosis in the South Asian subcontinent might have been influenced by such notions of the relation between tuberculosis, melancholia and artistic creativity, in the everyday life of communities the stigma of tuberculosis exposes the patient to dire risks from the way that the biomedical system(s) and the institutions of the state treat those who have suffered from the disease.
In an acute analysis of the biomedical discourse on tuberculosis, Paul Farmer has shown that there is predominant tendency to attribute failure of compliance to the “beliefs” of the patients and the stigma attaching to the disease. Farmer presents a survey of the literature to show that the agency of the patient is highly exaggerated in this discourse – patients often fail to comply because there are inadequate supplies of medicines in treatment centers, or because of severe constraints on their time and money. Yet the biomedical discourse creates geography of blame in which their failure to comply is attributed to their beliefs about tuberculosis. As in the case of sexually transmitted diseases, then, do the institutions of the state and science themselves contribute to this stigmatization of the disease?
In an ongoing study of health practices of families in low-income neighborhoods in Delhi, we found that while tuberculosis undoubtedly created new boundaries within kinship and community, there were other major deprivations patients faced from the institutions of the state. This was because of the way that notions of stigma and contagion were collapsed into each other in local administrative and social practices. Thus, for instance, children who had to drop out of government schools because of tuberculosis in one year were refused admission in the next year even after they were cured, on the grounds that they could spread the disease. The patients themselves experienced recurrent fears that the disease would never be fully cured and tended to attribute any subsequent symptoms of weakness, sadness, fevers, unspecified pains to the fact that they once had tuberculosis. In an overall environment of poor regulation of pharmacies, some of our respondents reported taking TB medication whenever they had cough or fever as a prophylactic because they were scared that the disease may recur and that they may be blamed for this. The collapsing of the categories of stigma and contagion points to the fact that the social course of the disease may extend beyond its biological course so that each notion reinforces the other. Stigma is seen as contagious and conversely a disease that is contagious may be seen as marking a person with stigma.
State and Science
As we saw in the case of AIDS activism, the homophobia in popular discourse as well as in the institutional practices of state and science was challenged in the responses by AIDS activists. Their challenge also brought out the way in which notions of stigma inform policy and programs of the state. It is salutary to realize that the community discourse on stigma is not isolated from the discourses of the sate. In the previously colonized countries such as India, the discourse on stigma bore the marks of colonial legislation. Thus the Vagrant Lepers Act, the Lunacy Act, the Contagious Diseases Act, and the Cantonment Act were all designed to protect public spaces from the presence of stigmatized bodies. It was only in 1986 that the Lunacy Act was changed to the Mental Health Act in India after considerable pressure from the mental health community. Yet various cases have come to light in recent year in which the state penal system treats the mentally ill on analogy with criminals – this is especially true for those patients who have been abandoned by their families and therefore fall into the category of indigent patients. The Vagrant Lepers Act forbids begging by “lepers” – the language used is not neutral and points to the way in which patients suffering from Hansen’s disease were often abandoned and had to fend for themselves by begging. The legislation in the case of diseases that were stigmatized has generally lagged behind scientific breakthroughs. For instance, though the prevalence rate of leprosy in India declined from 50.2 per 10000 in 1994 to 6.2 per thousand in 1996, changes in legislation were slow. This is true for many other countries. In the case of Japan, the Kumamoto District Court recently ordered the government to pay 1.82 billion yen in compensation to 127 Hansen’s disease patients for violating their personal rights by segregating them under the 1953 Leprosy Prevention Law. The court said the former Health and Welfare Ministry was negligent for failing to alter its isolation policy. This could have been done by 1960, when it had been confirmed that the disease was curable. The legislature was also held responsible for failing to amend relevant laws, including scrapping the Leprosy Prevention Law. The government policy of isolating Hansen’s disease patients in sanatoriums ended in 1996 when the Leprosy Prevention Law, which the Kumamoto court deemed unconstitutional, was abolished. (As reported in Mainichi Shimbun, 2001).
The above instances are important for devising strategies to deal with the stigma. While such stigmatized groups as patients with Hansen’s disease, prostitutes and other high-risk marginal groups, ethnic minorities, and new immigrants may not have the biocapital to fashion a cultural response to stigma in the manner of gay activists, the removal of pernicious laws and administrative practices would be an important step in low-income countries for dealing with such issues.
In conclusion I would like to draw attention to the following salient points with regard to notions of stigma and its relevance for public health interventions.
· While much of the literature in the West emphasizes the stigma as production of spoilt identity management, in other parts of the world stigma, along with its related concepts of contagion and defect, are seen as problems of connected body-selves.
· The moral anxiety around stigma arises from it connection with taboo – deformed body-selves are especially seen as marks of violation of sexual and reproductive taboos.
· Discourses on stigma are deeply implicated in the fault lines of racism, sexism, and other forms of discrimination, but it is important to treat culture not as a set of shared, unchanging beliefs but as framed by contests and adjustments. The notion of domestic citizenship provides an entry into thinking of the ways in which culture is mediated and recrafted by contested engagements in the sphere of domesticity.
· A major way of contesting stigma in recent years has been through formation of associational communities – not all forms of stigma, though, may be addressed in this manner since this depends crucially upon social capital and “bio-capital.”
· In many previously colonized countries, state legislations have lagged behind scientific knowledge in changing legislation that was enacted in colonial contexts and was designed to protect colonial interests rather than the interests of the patients. Since the institutions of the state are equally implicated in production of stigmatized subjects, judicial activism towards reform of pernicious laws in this regard would be an important resource for marginalized groups to deal with stigmatized conditions.