12. Uses of Public Shame/Social Responsibility and Private Guilt/Self-Interest In Order to Prevent HIV/AIDS among High-Risk Groups, the General Public, and Community Leaders

Salisu Abdullahi, Ismaila Z Mohammed, and Phil Manning

Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS) have become important issues of concern in Nigeria with about 5.8% of the adult population infected. Consequently it is imperative to assess the level of perceived threat of the epidemic, stigma and the awareness as well as the adoption of preventive measures against the spread of the epidemic that has no cure yet as indicated by 85% of women and 74% of men in Nigeria (Nigeria Demographic and Health Survey, 1999; NDHS, 2000). The rate of infection is likely to increase if no concerted efforts are made to sensitize the population to adopt preventive measures. In addition, the socio-economic condition in Nigeria is characterized by poverty and ineffective system of health information, health education, and health care.

Nigeria is in the early to mid-stage of the epidemic and there is no consolidated and sustained effort toward curving the epidemic as compared to developed and some developing countries. In addition, the disease has gathered significant momentum, inadequate health services and exorbitant cost of treatment, and a high level of stigma, thereby making a consistently high rate of infection in the country, which exposes large population at risk HIV/AIDS infection. The epidemic is advancing beyond the high-risk groups into the general population, with high level of institutional stigma. Who is at the risk of contracting HIV/AIDS in Nigeria? This chapter addresses the perceived threat of the disease as well as the level of stigma.

At Risk Individuals and Groups

Perhaps the most appropriate way to start this section is to determine who is most at risk of being infected by the HIV virus and, more specifically, what their characteristics are. According to National Population Commission’s (2004) report, Demographic and Health Survey for 2003, the majority of the respondents who engaged in high-risk sex in the past 12 months were from 15-24 years old. According to the Report of the 2003 national HIV sero–prevalence sentinel survey (Federal Ministry Health, 2004), all age groups in Nigeria are affected, but it is higher among 20-24-year-olds, with a national prevalence of 5.6%. This age group is followed by 25-29-year-olds with 5.4% national prevalence. The survey further showed HIV is higher among unmarried individuals in all the Nigerian geo-political zones—particularly in North Central and Southeast Zones. The prevalence of HIV is also higher among those with only a primary education (5.6%) and secondary education (5.4%). Women with no formal education or only Qur’anic education have the lowest prevalence of 3.8% and 3.9% respectively. The prevalence was higher among the women who donated blood in the three geo-political zones—Northwest, North Central, and Northeast. Generally, those with multiple sex partners and those engaging in unprotected sex were the highest risk groups as far as HIV infection is concerned. Thus, sexual practices involving multiple partners is relevant in the explanation of the spread and persistence of HIV/AIDS in Nigeria. At the initial stage, AIDS is thought to be a disease for homosexuals and substance abusers. Later, it became clear that HIV/AIDS was not confined to a particular group. According to Lamptey (2002, p. 5):

In the late 1980s as the epidemic surged and shifted from groups with high-risk behavior to the general population, especially to the marginalized and the poor…HIV transmission was linked to specific risky behaviors…these behaviors were influenced by societal factors that determine people’s vulnerability to infection.

According to the Report of the 2001 national HIV/Syphilis sentinel survey among pregnant women attending ante-natal clinics in Nigeria (Federal Ministry Health, DATE), 80% of the HIV/AIDS infections are contracted through sexual intercourse with infected persons. Moreover, young people are the majority of those who engaged in risky sexual behavior (having sex with multiple partners and/or without condom). Abdullahi (1996) reported people who operate as seasonal and/or migrant workers constituted a high-risk group. Equally included among the high-risk groups are long-distance commercial truck drivers and commercial sex workers. Abdullahi (1983) stated that from Kano to Lagos, towns that served as stopover points for long-distance commercial drivers tended to be popular with Hausa prostitutes. Consequently, places like Kwanar Dangora, Mararraba, Birnin Gwari, Pandogari, Mokwa, and Sabo Ibadan have high concentration of brothels, which housed prostitutes usually brought and or maintained by these drivers.

Shame, Stigma, and Guilt

Shame.

People who feel shame are responding to social circumstances in which they have been identified as deviant. Shame therefore occurs in the public domain. It is the product of a state of affairs in which people are aware that others know they have acted badly. The transgression is a generally accepted fact.

Importantly, shame is also an affirmation of shared community standards, since the feeling of shame can occur only in people who actively believe that they have—in absolute terms—broken rules. Shame is not something that can be experienced vicariously. In George Herbert Mead’s vocabulary, the person who feels shame has a well-developed “generalized other” (CITE). Although shame may seem to be rather intangible, the correct conceptual understanding of it has policy implications. This is because shame is a very useful emotion, connecting and reconnecting people to the communities whose rules they have violated. Shame is therefore positive in situations in which the shamed person can be accepted back into his or her community. For example, it is part of the Christian tradition, embodied in the rituals that precede the Eucharist, for Christians to declare their sins and failures publicly. Communal admissions of shame serve to reaffirm group membership, whereas the denial of the need for forgiveness effectively excludes people from the group. As Durkheim reminded us, even a Saint has sinned in “thought, word and deed” and in what he or she “has done or left undone” (CITE). For instance, in a study by Mohammed (2004a) it was found that more than 70% of the respondents said they would be ashamed of themselves and guilty if they were found to be HIV positive.

The data generated indicate that a significant proportion (77.2%) of the respondents are like or very like to feel ashamed of themselves if they are found to be HIV/AIDS positive. In addition, 75.5% said that they would be embarrassed if they were diagnosed as HIV/AIDS positive as opposed to only 5.5% who said that they would not be embarrassed for being HIV/AIDS positive. Beyond being embarrassed, 73.6% of the respondents said that they would feel guilty if they were found be HIV/AIDS positive and only 10% indicated that they would not be. Seventy percent of the respondents indicated they were likely to be full of fear if diagnosed to be HIV/AIDS positive, while 13.6% said that they would be somewhat fearful. This is largely because HIV/AIDS has no cure and the drugs used in reducing the opportunistic diseases and rapid metamorphosis from HIV to full blown AIDS are expensive and beyond the reach of the poor; as such, the reaction among people is characterized by fear. Feelings of disappointment with one’s self is common among the respondents as indicated by 82.7%. This clearly indicates that shame is very common largely because HIV infection is often associated with immoral behavior among the Hausa

Stigma.

The distinction between shame and stigma is that shame occurs because of publicly held knowledge of the transgressions of others, whereas a stigma indicates physical evidence of the transgression. A stigma is therefore usually understood as the physical proof confirming the existence of the reason for the shame someone feels. Famously, Goffman (1963) defined a stigma as something that is “deeply discrediting.” Stigmata occur in three forms: as “abominations of the body,” “blemishes of individual character,” and the “tribal stigma of race, nation, and religion” (Goffman, 1963, pp. 3-4). It is important to note that Goffman’s widely used classification is not as tidy as it appears, as it conflates the visible signs of stigma with imputations of stigma.

Goffman’s interest concerned the social psychology of the person possessing a stigma. He claimed that for some people their stigmata are “evident on the spot” with the result that they have a “discredited self” (1963, p. PAGE). For others whose stigmata are less obvious, they must live with a “discreditable self.” As stigma unfolds, it becomes clear that Goffman believes that everyone is at least discreditable, living in lesser or greater fear of public revelations of their transgressions.

People with discreditable selves are likely to be monitoring the reactions of their communities to others who are publicly “outed.” The more negative the perceived reaction to the transgression, the greater the desire for the person with the discreditable self to remain merely discreditable and not discredited. Evidence from Nigeria indicates that despite high rates of AIDS/HIV infection, respondents said that they did not know anyone with the disease. This may suggest that successful, if ultimately dangerous, methods of stigma control are being employed by AIDS/HIV positive individuals. However, it may also indicate that even knowing someone with AIDS/HIV is stigmatizing and hence informants are reluctant to disclose true information to researchers.

The high level of stigma is a consequence of associating HIV/AIDS with behaviors that are considered taboo (prostitution, drug use, homosexuality, etc.). In order to avoid being stigmatized, many of the persons living with HIV/AIDS (PLWHA) often do not seek testing and treatment due to the likelihood of being ostracized by their families, neighbors and friends and sometimes the fear of losing their jobs or access to public services (National Intelligence Council, 2002). In many societies, due to the high level of stigma attached to PLWHA, the social risk associated with HIV/AIDS infection is the denial of services and support needed by the victims due to stigma and fear. Abdullahi (2004b) revealed the following perception of PLWHA in the community:

• PLWHA are rough, indiscipline and immoral.
• PLWHA are people who cannot control their desire contrary to the injunction of the religious of Islam.

The minority opinion among the respondents felt that PLWHA are:

• Victims of their deeds but need to be supported and treated nicely and assisted so that they can exist as members of the society like everyone else.
• They have gotten the disease; unless they are integrated into the society through enlightenment they can spread the disease further.

The stigma associated with PLWHA has to do with the fact that these are people carrying disease with no cure and because of this they are seen as different from other people. Some people see HIV positive individuals as people who are paying the price of not following God rules. Thus, the whole status is reduced to guilt, shame, and stigma. The majority of the respondents in the GHAIN study indicated a willingness to freely interact with HIV/AIDS patients in terms of eating from the same plate, sleeping in the same room, shaking hand, and eating food cooked by PLWHA (Abdullahi, 2005). In his study of Risk Perception and Stigma in Jigawa State, Mohammed (2004) showed that 62% of the sample said PLWHA are either very likely or likely to be avoided and 67% of the respondents said PLWHA are likely to be unclean and 70% said people are likely to be uncomfortable with HIV/AIDS positive people.

Furthermore, the data indicated that 43.6% of HIV/AIDS positive people are very likely to be avoided by people and 18.2% said that HIV/AIDS positive are likely to be avoided by individuals in the society. Furthermore, a substantial proportion (24.5%) is undecided. In the area of the study, this shows the likelihood of stigmatizing PLWHA and that they are highly likely to be rejected. Furthermore, 67.3% of the respondents indicated that PLWHA are likely to be viewed as unclean and 61.8% indicated that they are very likely to think badly about people that are HIV/AIDS positive. Friendship with an individual who is HIV/AIDS positive is likely to be affected because 58.1% of the respondents indicated that, in fact, people are likely to be disgusted with anybody who is HIV/AIDS positive. Evidently from the data, a significant proportion (70%) of the respondents are of the view that people are very likely to be uncomfortable with the HIV/AIDS positive in the society.

The GHAIN data (Abdullahi, 2005) showed that the sampled PLWHA maintained they are victims of common belief about HIV/AIDS. “Whatever you said in the community people look at it either not right or uncomfortable because you are HIV positive. So the level of awareness is still poor” (Male IDI respondent, Abdullahi, 2005, p. 43).

Some of the PLWHA blamed media campaigns for some of their discrimination through the use of derogatory terms. A female FGD member argued:

From the initial stage journalist stigmatized the disease and those with it. Even from the name Kanjamau (thinner) is defamatory because there are deadly diseases like diabetes, but those suffering from them are never discriminated but AIDS patient are discriminated. The journalists need to clear this problem they created. (Abdullahi, 2005, p. 47)

Many of the victims usually exhibit fear, withdrawal, and silence.

Guilt.

Guilt precedes both shame and stigma. Guilt is rightly understood as a painful burden because the person must bear it alone. It is part of what Philip Rieff calls our “remissive culture” to seek the minimization of guilt by cathartic rituals, whether of religious or psychotherapeutic origin. Guilt is the personal knowledge of our transgressions before the public acquisition of this knowledge. Rieff is very critical of any contemporary effort to minimize guilt. Rather than viewing guilt as a damaging emotion, Rieff understands guilt as a positive, essential self-monitoring device. Unlike shame, which requires community involvement, guilt functions autonomously. Efforts to minimize the powerful, constraining effects of guilt have the unintended consequence of broadening the definition of acceptable behavior. For those sympathetic to liberalism, this may be attractive, as it defends individual autonomy, but it does so at the expense of the integrity and traditions of the community.

Conclusion and Policy Implication

The overall picture indicates that there is a high level of stigma, feelings of shame, and intense emotion associated with the disclosure of indulging in an unprotected sexual relationship outside the marital union and HIV/AIDS positive status. There is also a strong feeling associated with the disclosure of the stigmatizing condition. In addition, the perceived threat of HIV/AIDS and its negative consequences are clear identified. However, in spite of the prevalence of the perceived threats of the diseases, the tendency to use a condom as a means of controlling HIV/AIDS is perceived with mixed feelings, which exposes a significant proportion to the risk of infection. Furthermore, evidence from the data indicates diverse responses to the items in the Risk Behavior Diagnosis Scale. A large proportion of the respondents agree to the severity of the disease compared to smaller proportion who think they are susceptible to the infection. Similarly, items under the response efficacy have generally higher values when compared to items under self-efficacy, which have lower scores. This shows the skepticism associated with the use of condoms for the purpose of HIV/AIDS prevention.

The policy implications of this set of conceptual distinctions for AIDS/HIV treatment in Nigeria are the following:

• Shaming and stigmatizing rituals are helpful only for policy purposes in environments where norm violators can be readmitted into the community. Social policies should therefore address the question of how those identified with HIV/AIDS will be reconnected to their communities after the public disclosure of their disease. Prominent, public cases that indicate to broad populations that those with discredited selves have in fact been welcomed back into the embrace of their communities are critical. There is a model for this in Christian culture. I do not know whether a comparable set of rituals exist in Islamic culture.
• Guilt is a very valuable emotion that must be used in HIV/AIDS prevention. Shame is felt by those already infected and must be met by policies that reintegrate patients into communities. By contrast, guilt is felt by people with discreditable selves whose fear of public disclosure can be used to restrain their behavior. This suggests a much more focused set of public information campaigns that target the specific dangerous behaviors of high risk, hard to track groups. For example, research already conducted by sociologists in Nigeria (CITE) indicates that sexual norms among truck drivers have the unintended consequence of spreading sexually transmitted diseases to diverse populations. Given the impossibility or extreme difficulty of shaming and stigmatizing for this group, the self-monitoring power of guilt must be used to constrain their behavior.

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