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Organizing Multiple HIV and AIDS Discourses for Engaging Crisis Communication in India
Avinash Thombre
Abstract
India has overtaken South Africa recently as a country with the largest HIV positive population. The present analysis uses Parrott (2004) framework of identification of discourses in the HIV/AIDS context in India in order to help effectively design risk and crisis interventions. HIV/AIDS discourses in India are identified in the lay, societal, and expert arenas. The paper examines stigmatization of HIV and AIDS as a factor in India’s inability to heed warnings to avert crisis situation. Specifically, the present chapter explicates discourses that allow HIV and AIDS risk in India to incubate to erupt into a future public health crisis of a significant magnitude. Coherence of discourses based on continuum of communication and health care is suggested.
It [HIV AND AIDS] will slice through India like a hot knife through butter.
Bill Clinton, former President of the United States, at the Global Business Council on HIV/AIDS Awards Dinner, New York, June, 2002.
India is projected to play key role in future global affairs. There has been extensive media coverage and speculation related to its HIV and AIDS disease burden. HIV infections in the past five years have increased substantially nearly bringing the country closer to a health crisis. Current official estimate are that there are 5.134 million HIV-infected people in India constituting about 0.6 percent of the total population (NACO, 2005; You and AIDS, 2004). Although the percentage is small, the numbers are staggering, the highest of any country, overtaking South Africa (UNAIDS, 2004). Understanding HIV/AIDS in India as a public health problem is complex. The present analysis focuses on stigma as one of the primary contributing factor to the HIV and AIDS near crisis situation in India.
Crises itself typically are understood as a broad class of events that are disruptive, unanticipated, and threatening (Seeger, Sellnow, & Ulmer, 2003). In particular, public health crisis are problematic and challenging as most have negative outcomes associated with loss of human life. Traditionally, crisis communication begins after risks emerge or erupt into a crisis on a large scale.
The complex process of sense-making of a crisis event was examined by Barry Turner (1976) through a six-stage failure of foresight model. The first stage of Turner’s conceptualization is a period in which subtle changes in environment go unnoticed. For example, a few HIV infections in the early 80s in Africa were hardly considered abnormal or threatening. In the second incubation stage, an accumulation of events leading to towards a crisis occurs. In the case of Africa’s HIV and AIDS crisis, the incubation period was sudden, a matter of a few years, eventually leading to a full-fledged crisis.
The first signs of a crisis are manifested in the third precipitation stage, the period that signals the eruption of threat into a crisis. For example, at this stage there is an actual loss of life or damage to property, creating chaotic situations. It is at this stage that process becomes distinctly visible. However, the magnitude of the crisis has not yet reached the catastrophic phase. In the fourth stage, called the onset, the crisis is full blown, causing extensive damage and large-scale disruption to normalcy. This stage is characterized by long periods of loss of life. The last two stages involve rescue and salvage and a series of cultural adjustments that call for acceptance of changes in norms and circumstances.
The current situation in India of stigmatization of those diagnosed with HIV/ AIDS infections is leading to a failure to heed warning signals and corresponds to Turner’s second incubation stage. Stigmatization causes people and authorities to fail to see that a risk is real, leading them to ignore it and thereby allow it to attain crisis status. With continued failure to recognize warning signals, the situation has the potential to quickly develop into the precipitation and further into onset stage. It results in large scale deaths in vulnerable populations.
Recent conceptualizations of crisis communication by Seeger, Sellnow and Ulmer (2003) suggest risk communication as part of the pre-eruption or pre-crisis stages. Defined by a variety of groups, risk communication differentiates from crisis communication as any two-way exchange between stakeholders about the existence, nature, form, severity, or acceptability of risks. It addresses factors leading to likelihood of occurrence of a particular crisis and tries to predict its magnitude. Based on these factors, it advocates allocation of resources for research and control (Covello, 1992). Thus, risk and crisis communication go hand-in-hand and focus on the processes of information and opinion exchange with the public (National Research Council, 1989). Efforts to communicate in public health crisis situations, however, are hampered by stigma known as an interactional process within societies in which particular social identities are collectively devalued (Ogden & Nyblade, 2005).
To address stigmatization of those infected with HIV and AIDS to stop or slow the rate of infections in the context of public health crises, examination and understanding of variety of discourses are essential. The HIV and AIDS discourses have a remarkable ability to generate meanings which is apparent when one examines the multiplicity of its interpretations (Pittam & Gallois, 2000; Gilmore & Somerville, 1994; Sontag, 1991). HIV/AIDS is referred to as a punishment from God or as a gay plague. In Africa, traditional healers describe it as an “eating” away at the body, as a “greedy” activity of the virus—a thing that sucks life out (Garrett, 2000; Wolf, 2002). In India, HIV/AIDS is referred to as a disease of new untouchables (Singhal & Vasanti, 2005).
Parrott (2004) advocates a framework of identification of these main discourses under the larger domain of health communication and public risk communication in order to effectively understand risk interpretations and design interventions. Identification of lay discourse focuses on understanding how the general public frames a particular disease. Lay discourses constitute use of indigenous knowledge sources based on cultural, social, and individual practices to guide individual health behavior and healthcare outcomes. A next level discourse, societal discourse, concerns allocation of scarce resources, including money for scientific and behavioral research and health care delivery services. It focuses on time spent on analyzing, discussing a health problem, and setting an agenda in the political, religious, and organizational arenas to champion health delivery and services.
The final discourse, called expert discourse, concerns the understanding and use of expert scientific information and knowledge about health and health care in order to inform, motivate, and set rules for profit-making. Parrott (2004) emphasized that identifying these discursive practices will help develop a unified preventive communication strategy inclusive of the many discourses on the issue. It would mean not ascribing attention to select discourses at the expense of ignoring other discourses in an effort to design coherent risk prevention strategies.
Based on the above framework, the purpose of present chapter is to (1) understand and explicate HIV and AIDS risk discourses in the societal, expert, and lay spheres in India, and (2) examine stigmatization of HIV and AIDS as a factor in India’s inability to heed warnings to avert crisis situation. Specifically, the present chapter explicates discourses that allow HIV and AIDS risk in India to incubate to erupt into a future public health crisis of a significant magnitude. The analysis is based on random and informal open-ended discussions conducted in late 2004 with HIV and AIDS experts, HIV positive individuals, and healthcare workers in Pune, India. Data for the analysis is also based on archival materials, newspaper clippings and analysis of web-based discourses. Implications for risk and crisis communication are discussed.
Lay HIV and AIDS Discourses in India
As discussed in the introductory section, the foci of lay health and health care discourse centers on the use of indigenous culture-based knowledge sources. The discourse relies on experiential information derived from social, cultural, and individual arenas that guide individual behavior with health and health care outcomes (Dutta-Bergman, 2004). Specific HIV and AIDS related cultural beliefs further intersect practices, social networks, norms, and the role of perceptions about expectancies within one’s social groups. Understanding lay discourses is crucial as these may overshadow rational decision-making, hampering effective risk and crisis communication. The knowledge of these discourses helps in framing appropriate design of more ecologically sound message interventions (Parrott, 2004).
HIV and AIDS lay discourses among majority of low, middle, and upper class Indians is broadly associated with three components (1) denial of being HIV and AIDS positive, (2) fear of HIV and AIDS, and (3) discrimination and stigmatization as a result of HIV and AIDS. These lay discourses constitute multiple sub-layers. Identifying the many sub-layers is imperative to designing effective risk and crisis communication strategies. While denial is connected to fear of HIV and AIDS, stigmatization and discrimination can be manifested in overt or covert forms. Nelson Mandela (2000) asserted that many HIV and AIDS infected individuals are killed not by the disease itself but by the stigma surrounding the disease. This assertion holds true for most cases in India. Using Parrott’s framework, the following paragraphs illustrate the manifestation of HIV and AIDS denial, fear, and discrimination discourses in the lay sphere in India.
Denial Discourse
First Indian case of HIV infection was detected in 1986 in Chennai (Solmon, Chakraborty, & Yepthami, 2003). The progressive development of present lay HIV and AIDS stigmatization discourse has its roots in the initial denial phase of early HIV infections in India. In the first 10 years a distinct HIV or AIDS discourse in the public arena was absent due to scant knowledge and discussion ( Singhal & Rogers, 2003). The social taboo of discussion of sexual matters further prohibited frank discussion of causes and spread of HIV. This led to creation of a denial discourse among the lay population. Many did not know that they suffered from HIV and AIDS which led others to deny HIV or simply ignore it.
As the years progressed and statistics increased, the infected were vaguely referred to as suffering from tuberculosis (an opportunistic infection) and not HIV or AIDS. The social taboo increased in recent years, resulting in a distinct absence of naming HIV and AIDS infections in the lay discourse. Despite several government sponsored information campaigns, common people even today acknowledge their relatives infected with HIV and suffering from AIDS in a discreet manner. The infected are referred as simply “ill”.
If one persists to know the reason of being ill, most answers describe that the cause is unknown. In common parlance, HIV is referred to as some kind of bad disease. Any further discussion of the exact nature of suffering is discouraged and avoided. The silence and rumors in general associated with HIV and AIDS result in spread of fear and lack of knowledge of transmission routes (UNAIDS, 2002). Hence, early denial discourses resulted in the creation of an atmosphere ripe for the next level of fear and discrimination discourses.
Fear Discourses
Prominent HIV and AIDS lay discourses at the individual level consist of fear of ill-treatment. HIV-positive people are afraid of various illnesses, debilitating ill-health, painful conditions, and social rejection. The discourses center on cases of medical neglect such as individuals being denied admission to hospital or desertion during treatment. The discussions focus on loss of significant relationships, trust and confidence (UNAIDS, 2002). Lay discourses frame HIV and AIDS as associated with, or resulting in, loss of job or income and fear of damaging or losing family reputation.
Next, fear discourses center on social ostracizing and isolation, of being avoided or shunned by close family members. Death, dying early, dying uncared for, being denied last rites, and social ridicule form a central part of lay fear discourses. A sub-layer of fear discourses is the common fear of being identified with deviant, morally sinful behavior, mainly sexual promiscuity and visiting sex workers. Lay fear discourses in work settings are expressed in covert forms. Many employers terminate or refuse employment to HIV-positive people out of fear of transmitting infections to other employees.
In other contexts fear-related interpersonal discourses can be examined among healthcare staff. As a large section of the middle and lower level health care staff lacks knowledge about medically appropriate ways to treat positive people without themselves getting infected, incidents of medical staff being infected accidentally by coming in contact with positive people circulate. This lack of knowledge translates into fear of HIV and AIDS people leading to ill-treatment of positive people.
The ill-treatment is manifested in refusal to provide treatment for HIV and AIDS related illness and refusal to operate or assist in clinical procedures (Bharat, 2000). For example, HIV-positive people are provided restricted access to facilities such as toilets and common eating and drinking utensils. Many patients are confined or isolated in separate wards or given a separate bed outside the ward in a gallery or corridor. Cases of some being denied ongoing treatment are common.
Fear discourses increase in severity when health staff uses protective gear (gowns, masks, etc.) when treating positive people. Cases of health staff refusing to lift or touch a HIV-positive person’s dead body and using plastic sheeting to wrap the body are common. There are reported delays in treatment, including slow service, and a reluctance to provide transport for the body. Positive people are made wait in queues or asked to come again. These discourses form a central part of fear of HIV among lay people (Bharat, Aggeleton, & Tyrer, 2001). The fears circulate reinforcing misconceptions of HIV and AIDS resulting in continued fear.
Discrimination and Stigmatization Discourses
Discrimination is at the heart of lay discourses. It is especially directed against women identified as HIV-positive. A common occurrence of discrimination is rejection of positive women by family members. Women are accused of not controlling their partners' urges to have sex with other women. In some cases, women whose husbands have died from AIDS-related infections are blamed for their deaths. For example Kareena, an HIV-positive woman said, “My mother-in-law tells everybody, Because of her, my son got this disease. My son is simple as good as gold—but she brought him this disease”
In home settings, infected women are highly stigmatized and often find themselves discriminated by their family members. Sunita, an HIV-positive woman, for example narrated her experience, “My mother-in-law has kept everything separate for me—my glass, my plate, they never discriminated like this with their son. For me, it's don't do this or don't touch that and even if I use a bucket to bathe, they yell—‘wash it, wash it.’ They really harass me. I wish nobody comes to be in my situation and I wish no
body does this to anybody. But what can I do? My parents and brother also do not want me back.
Common instances of discrimination are refusal to share property or access to finance. Women are blocked access to spouse, children, or other relatives and even subjected to physical isolation at home. Blocked entry to common areas or facilities such as toilet or neighborhood areas are of common occurrence. Children of HIV-positive parents are often denied the right to attend school or are segregated from other children. The manifestation of discourses is outlined in Table 1.
People living with HIV/AIDS who choose to disclose their status at work experience extreme discrimination, including removal from job or forceful resignation. Many are punished by withdrawal of health/insurance benefits and provided restricted
Table 1. Manifestation of HIV and AIDS Lay Discourses in India
Layer of Lay Discourse / Forms of Manifestation1. Denial / 1. Inhibition of frank discussion about HIV and AIDS
2. Refusal to learn HIV transmission routes
3. Silence
4. Rumors about HIV and AIDS
2. Fear / 1. Suffering associated with having infection
2. Refusal to hospital treatment
3. Loss of relationships, social networks
4. Loss of reputation, power, standing in society
5. Isolation, public rejection
6. Being labeled deviant
7. Loss of customer/business
8. Blamed for bad luck of family
9. Loss of marriage, childbearing opportunities
10. Physical violence (beatings, throwing stones,
arrests)
11. Confinement/restriction to house or a particular
space
12. Separation from children
13. Threats, mocking, insults
3. Discrimination / 1. Harsh treatment by community
2. Losing income, property
3. Losing face
4. Fair treatment in employment opportunities
5. Differential treatment in public spaces, health
settings, schools
6. Denial of housing, eviction by landlord
7. Loss of employment
8. Denial of loans, scholarships
9. Provision of substandard health treatment
10. Refusal of services (food, facilities etc)
Adapted from Ogden J., & Nyblade, L. (2005). Common at its core: HIV-related stigma across contexts. Washington, D. C: InternationalCenter for Research on Women.
access to shared facilities. Labeling and name calling occur frequently (Bharat, 2000).
Mohan, a HIV positive man, aged 27 said, “Nobody will come near me, eat with me in the canteen, nobody will want to work with me, I am an outcast here”
In its overt forms, stigmatization discourses lead to ill-treatment of bodies of those who die of AIDS-related illnesses. In Mumbai, bodies of HIV/AIDS victims are placed purposely in black plastic bags, a practice which makes finding a good undertaker and funeral services difficult. In several cases, infected bodies are not administered traditional burial rites, a serious loss of social prestige in a traditional society. In Kerala, the highest literate state in India, bodies of HIV and AIDS victims were refused the most basic right of burial rites or space in the cemetery, a case of acute stigmatization (Raghavan, 2005).