Organizing Multiple HIV and AIDS Discourses for Engaging Crisis Communication in India
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.
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 (www.unaids.org; 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.
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 Manifestation
1. Inhibition of frank discussion about HIV and AIDS
2. Refusal to learn HIV transmission routes
4. Rumors about HIV and AIDS
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,
11. Confinement/restriction to house or a particular
12. Separation from children
13. Threats, mocking, insults
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
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: International Center 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).
In its most visible overt forms of lay stigmatization discourses are manifested in extreme violence towards HIV-infected. The most violent form of stigmatization could mean death for individuals living with HIV. For instance, a HIV positive woman in Dharsana village in the Dhandi district of Gujarat State in India was ostracized, beaten, and gruesomely murdered. Villagers stoned her because she carried the infection (Thomas, 2005). A common justification offered as part of lay stigmatization discourses is that the woman deserved her fate when she acquired this disease.
In contrast to lay discourses, the societal discourses differ in their meaning and naming of HIV. Using Parrott’s organizing framework, the following section explicates the present HIV and AIDS related societal discourses in India.
HIV and AIDS Societal Discourses in India
The existence of societal discourses can be examined when individuals in influential positions engage in meaning-making process of HIV/AIDS to frame policies, laws, and their implementation (Parrott, 2004). The meaning-making discourses set tone for deciding priorities for health research and policy for HIV and AIDS. Collective societal discourses help shape future scientific knowledge generated in a society. It also determines in what form the knowledge will be available and the kind of evidence that will be used to promote public health. Emergent knowledge generated from societal discourses is, in a critical way, important in shaping future crisis and risk communication and impact intervention strategies. As in the case of lay discourses, manifestation of societal discourses can be examined as cases of denial, fear, and discrimination of HIV and AIDS individuals. The various manifestations of societal discourses are outlined in Table 2.
Denial and Dismissal Discourses
A substantial segment of HIV and AIDS discourses among decision makers, particularly among the governmental officials in India relate to denial and dismissal of the existence of HIV/AIDS (Singhal & Rogers, 2003). During early 1990s, the federal health minister and health officials either extremely downplayed the presence of HIV and AIDS or denied it outright. In cases where the presence of infections was acknowledged, it was portrayed as having no impact on India and therefore a minimal cause of concern. Societal discourses primarily framed HIV as a Western or African problem that does not have a substantial effect on India (Singhal, 2004). India’s strong cultural values with regards to sexuality were cited as helpful and sufficient to protect it from the rapid spread of HIV and AIDS infections.
Global Fund to Fight AIDS Executive Director Richard Feachem (2003) noticed the denial and commented:
There is a fairly widespread view among educated people and opinion leaders in India that HIV and AIDS is primarily an African problem and that Hindu and Muslim culture will protect India from the most serious consequences of the virus....As in other countries, there has been a resort to the mythology of cultural immunity. It can't happen to us because we're different. . . . I found on my visit a persistent tendency to minimize the current scale of the epidemic and the potential future growth.
The denial discourse increases as there exists a lack of consensus within the political establishment and among non-governmental organizations (NGOs) about the extent of the HIV pandemic and the right strategy to combat it. The other bone of contention relates to the method of dealing frankly with sexuality (Chatterjee, 2003). For example, former Chief Minister of Andhra Pradesh Chandrababu Naidu favored a direct approach to deal with sexuality and spread of HIV. He wanted condoms to be displayed and promoted at official functions. He initiated a project to hand out free condoms at liquor shops, making them available through vending machines at cafes on highways and at railway stations. However, federal Health Minister, Sushma Swaraj, opposed the idea, fearing it would go against existing conservative sexual norms. She reasoned that promoting condom use would encourage immoral sexual behavior. These instances of lack of consensus hamper risk prevention efforts.
Societal discourses by individuals in positions of power are responsible for continued denial and inaction (Chatterjee, 2003).
The problems facing HIV and AIDS prevention efforts are compounded by the refusal of many Indians in positions of power to accept that their country faces a grave threat from the pandemic. On the surface, HIV and AIDS seem to have become a priority. As long ago as 1998, Prime Minister Atal Behari Vajpayee conceded, HIV and AIDS is the most serious public health problem facing India. And AIDS is now a fashionable cause among actors, fashion divas, rock stars, and socialites. But when the discussion of AIDS shifts from the vague to the explicit, from talk to action, problems crop up. (p. 1526)
The effect of dismissal and denial discourses are reflected in the meager allocation of resources to combat the spread of HIV. A total of $38.8 million of government’s own funds were allocated for a five-year period (1999-2004) to tackle HIV/AIDS, demonstrating a lack of serious commitment (Avert India, 2005). Despite the obvious increase in infection rates, denial discourse of people in positions of power has not changed and lessons have not been learnt. This is reflected in the so-called enhanced outlay of meager $11.08 million for the entire health department for the year 2004. Of the total outlay, only $2.34 million has been allocated for HIV and AIDS prevention and treatment for 2004-2005 (Ekstrand, Garbus, & Marseille, 2004). Thus, denial discourses continue to hamper prevention efforts.
Government, media, and research officials responsible for HIV federal and state prevention strategies and media campaigns unknowingly help create fear of certain sections of population. Risk prevention messages designed and developed by officials target the role of women engaging in commercial sex work. The association of HIV with commercial sex workers is interpreted by general population as a disease that is affecting only immoral people, or those associated with immoral behavior such as prostitution.
In the larger society, messages targeted towards commercial sex workers create a backlash. Several media reports describe violence against female sex workers, creating fear of HIV and AIDS and targeted interventions.
Discrimination and Stigmatization Discourses
While discrimination and stigmatization of HIV infected individuals is rampant, there is a lack of mainstream societal discourse on it. The discrimination cases are hushed up by officials, portrayed as only isolated incidents and not as a norm. Wishful thinking on part of officials exists. There is a belief that if HIV discrimination is not talked out loud it will disappear on its own. Cases of discrimination of daughter-in-laws, those in work place and medical settings are ignored. Human rights abuses are rampant, including discrimination perpetuated by government officials and employees directed at people living with HIV/AIDS, sex workers, and male having sex with males, as well as volunteers who work on HIV and AIDS projects (Pujari, 2004).
There is no explicit national policy on HIV and AIDS that addresses discrimination and no national legislation to serve as an implementing instrument. It is rare for those participating and perpetuating discrimination to face punishment. Cases of violence against HIV positive individuals in rural areas rarely result in punishment. However, a few lawyers in Mumbai and New Delhi have recently started providing voluntary legal services free of charge, thus incriminating some responsible for discrimination.
Table 2. Manifestation of HIV and AIDS Societal Discourses in India.
Layer of Societal Discourse
Forms of Manifestation
1. Lack of acceptance of the magnitude of
HIV and AIDS as public health problem
2. Meager allocation of resources
3. Not acknowledging number of real
deaths due to HIV
4. Turning a blind eye to transmission
1. Cultural repercussions
2. Political fallout
3. Loss of power
4. Religious fallout
1. Shunning certain populations – sex
workers, homosexuals, drug users
2. Branding deviant groups dangerous
3. Finger pointing other officials
4. Human rights abuses
Finally, sense-making associated with HIV and AIDS differ substantially in the realm of expert discourses from the societal discourses. The following section explicates meaning-making of discourses associated with HIV and AIDS in the expert arena.
Expert HIV and AIDS Discourses in India
Understanding expert discourses is fundamental to risk prevention. These discourses are developed by experts in the field and focus on use of expert bio-scientific information and knowledge about health and health-related care activities. Expert discourses primarily shape the methodologies and strategies used in informing the general public and are important in risk and crisis prevention. These discourses set the tone for formulating policies of motivating the direction of health research (Parrott, 2004). The method by which expert discourses are constructed, interpreted, and disseminated (particularly with regards to risk-construction about HIV and AIDS, its transmission, prevention and coping mechanisms) influences whether these messages will be accepted or rejected by lay people.
Medical doctors, scientists, and prevention experts engage, formulate and shape expert discourses of HIV and AIDS in India. In addition, communication experts and individuals trained in handling public relations also actively shape these expert discourses. These individuals are highly trained, competent, and set the agenda for designing the direction of future prevention research, allocation of monies to care centers, communication activities, and prevention strategies. The following paragraphs illustrate the presence of expert discourses in the realm of fear, denial and discrimination areas (Table 3).
A closer examination of present discourses in expert HIV and AIDS prevention in India reveal its organization into fear-based risk-construction messages (Singhal & Rogers, 2003). Primarily, HIV expert discourses in India classified HIV and AIDS risk as a demographic variable rather than a behavioral factor. Based on epidemiological and public health disease transmission data, experts identified risk groups as men having sex with men, hemophiliacs, heroine addicts, and commercial sex workers.
Prevention messages targeting these specific populations were disseminated on large scale throughout the country. After identifying certain practices (not using condoms, engaging in multiple partners, or risky sexual behavior), these messages asked the larger population to stay away from risky populations and their practices. Intense media campaigns further perpetuated fear of particular groups and created a notion that general population are not at risk.
Prevention efforts designed to prompt individuals into recognizing the heightened probability of HIV infection linked to these and other activities thus create a cycle of fear, leading to denial and discrimination. (Estrada & Quintero, 1999; Fisbein, 2001). Next, experts and their subordinates were in denial for a long time about the existence of HIV cases.
Similar to discourses engaged by lay people and those in positions of power, the knowledgeable experts too were in self denial of the real magnitude and extend of transmission of HIV and AIDS in the general population. Due to lack of accurate data collection methods, experts were in denial of the rampant existence of multiple partners. Acknowledging that infections jumped from risky population into the general population was another aspect of serious denial.
As a result experts failed to seriously take into account the rapid spread of HIV and AIDS. One of the negative consequences of denial discourses was the inadequate distribution and emphasis on use of condoms to the targeted risky population. The impact of denial discourses meant that research on the transmission patterns and identifying different strains of HIV virus in Indian population was carried out by the scientific community with remarkable sluggishness. Likewise, the communication campaigns launched by many governmental and private agencies were not targeted to the general population and not given enough air time.
The critical association of stigmatization and discrimination with HIV and AIDS in the general population was ignored by experts during the 1990s. The discrimination discourses engaged by experts were mostly during the early phases of HIV infections (late 1980s and early 1990s). Instances of presence of discrimination discourses found among experts are primarily cases of unconscious blame in the media campaigns. For example, communications strategies are based on don't do this because this will happen. Prevention messages designed were blame-oriented and advised the larger population not to hang around with those with alternative sexual lifestyles. As a result of these messages, the affected people were feared, shunned, and ostracized by society (Singhal, 2004). Cases of discrimination were thus unknowingly perpetuated. In some places, expert discourses continue to be blame-oriented, moralistic, preachy, and didactic.
Table 3. Manifestation of HIV and AIDS Expert Discourses in India.
Layer of Expert discourse
Forms of Manifestation
1. Beware of commercial sex workers
2. Beware of homosexuals
1. Not adequate use of condoms
2. Rampant existence of multiple partners
3. Acknowledgement that HIV has spread
to general population
1. Blaming certain groups as problematic
2. Blame oriented media campaigns
The final section of the present chapter advocates a strategy to coherently combine lay, societal, and expert discourses to draw a meaningful framework for tackling stigmatization associated with HIV and AIDS in India. The idea is to engage specific discourses with each other and create an atmosphere of openness that strengthens acceptance of HIV-positive people. The aim of engaging the three different discourses is to help influence and design more coherent HIV prevention messages. The coherent message design strategy will hopefully help contain the present crisis situation in India from reaching a full blown crisis like Africa.
Engaging Discourses: Coherence in Construction of HIV and AIDS Prevention Messages
The choice now is clear and stark: India can either be the home of the world’s largest and most devastating AIDS epidemic—or it can become the best example of how this virus can be defeated.
—Bill Gates, founder, chairman and chief software architect, Microsoft Corporation.
There are apparent differences in sense-making of HIV and AIDS risk-construction in India in the lay, societal, and expert discourses. Understanding the differences in these discourses is central to understanding the incongruence in meaning-making and confusion in risk message interpretation by general population. The present analysis clearly demonstrates presence of denial, fear, and stigmatization in lay, societal, and expert domains. The complex cultural and social meanings given to prevention messages by lay people resulted primarily in creating fear, denial and discrimination. Likewise, different meaning ascribed to HIV/AIDS by people in positions of power is problematic to developing effective strategies.
Analysis of successes and failures of prevention discourses hampered by stigmatization of those diagnosed with HIV and AIDS reveal problems at multiple levels. In the lay sphere, there is distinct presence of denial, fear, and discrimination discourses that are independently interpreted by the general population. These separate discourses result in complete failure of prevention messages. A direct result of not engaging lay discourses is continued increase in number of infections. The failure leads to misconceptions and increased stigmatization of HIV and AIDS.
In the expert sphere presence of unintentional denial discourse is evident while presence of denial discourses in the societal sphere is minimal. An area of concern is the presence of denial, fear, and discrimination discourses in substantial levels in the lay sphere. Fear discourses exist in substantial levels in societal and expert discourses leading to large scale incongruity in interpretation of prevention messages. Table 4 explains the levels of these discourses in the three spheres.
Table 4. Levels of presence of HIV and AIDS Communication Discourses in India in three spheres.
Recognition of existence of multiple layers of lay, societal, and expert discourses is a first step in understanding how HIV is understood in India. The present chapter advocates effective and efficient HIV and AIDS risk prevention in India is possible by acknowledging denial, discrimination, and stigmatization associated with HIV and AIDS. It is important to engage the different levels of present expert, societal, and lay discourses with each other to arrive at a coherent integrative framework. Coherence in discourses helps in developing appropriate risk prevention messages that are engaging, involving, and enlightening (Parrott, 2004). A strategy of coherent care-based discourses is proposed in the following paragraphs.
Care-based Coherent Discourses
The proposed coherent discourse is based on creating a model of comprehensive dialogue-based prevention programs that are backed by holistic care, treatment, and support services. Based on a continuum of care for people living with AIDS, the coherent discourse approach borrows aspects of the comprehensive Y. R. Gaitonde model presently implemented as on a trial basis in south India (YRG Care, 2005). The communication and care centered model involves transfer of core values concerning patient-centered care, client confidentiality, and the broader involvement of families and communities, keeping in mind different contexts, cultures, and resources.
HIV infections in India jumped from high risk populations to the general population recently. In order to stem the rate of infections, as a first step in implementation of the communication and care centered model, a change in expert discourse needs to take place. It is suggested that the expert discourse focus on improving clinical, laboratory, and technical capacities of healthcare staff. Next, the expert and societal discourses can focus on orienting the general population and the HIV and AIDS positive people to think themselves as normal and seek help in coping with the disease. A similar experiment in a patient-based care model is already being implemented in south India with encouraging success (YRG Care, 2005).
Societal discourses can focus on campaigns that provide and enhance support facilities such as counseling and social support services. Officials and policy makers should advocate high quality voluntary counseling and testing services and make sure that it is provided in many areas. Evidence suggests that introduction of testing and treatment in affected communities reduces fear, stigma, and discrimination that surround HIV and AIDS. It also increases demand of HIV testing and counseling and reinforces prevention efforts (WHO, 2004). Together, these efforts further reduce stigmatization.
Framing coherent messages in expert and societal discourses drives home messages that lax norms of male sexual behavior are dangerous for men, their wives, and their families. Further, encouragement provided to develop messages documenting the advantages of being aware of an individual’s HIV status helps reinforce beliefs that one can proactively protect one’s health and live longer and happier. Examples highlighting someone dear to any one of us could be HIV positive helps in personalizing the disease and wringing out associated stigma.
At core of an engaging expert discourses is recognition of the prevalence in lay discourses of a genuine fear of people living with HIV and AIDS. Expert and societal discourses can heed this genuine fear of the disease by acknowledging it is important and natural to fear HIV and AIDS. However, highlighting positive examples of individuals who have successfully lived with the virus as productive members of the society in a mass media campaign can help change lay fear and stigmatization discourses. The campaign results in reducing fear of people living with HIV and AIDS, creating an atmosphere of acceptance and understanding in the majority population.
Discourses in expert realm can focus on generating beliefs stressing the importance of continuing normal relationships with an HIV-positive person. This will convince individuals engaging in lay fear discourse that HIV can be managed effectively. It helps reduce stigmatization and discrimination. Emphasis of culturally appropriate examples of HIV-positive people living longer and productive lives with healthy life styles, extending and giving love and support would help. Messages designed to respect and support HIV-positive people willing to declare their status creates a social environment that allows them to do so and further neutralize stigmatization.
Steps to engage societal discourse among officials and politicians on HIV and AIDS to monitor education programs that help increase health awareness in the community needs to be a national priority. This increased health awareness results in diminished stigmatization of the disease members of society. Interactive and integrative health communication based education programs such as media campaigns should address issues of sex and sexuality that are traditionally are not discussed openly in India.
Action-based societal discourse can follow by preventing socially vulnerable groups from becoming infected with HIV. Strict guidelines to protect the rights of people living with HIV/AIDS to education, work, and privacy and to ensure care and support needs to be put in place and implemented strictly. Officials can combat discrimination of HIV-positive individuals by health workers by providing adequate training to health care workers in clinical management of HIV and AIDS.
Further, an official announcement of India’s National AIDS Prevention and Control policy at the federal level can reduce much confusion and provide clear direction to officials. A movement to start HIV and AIDS patient-friendly hospitals needs to be strengthened (WHO, 2004). All government hospitals should be instructed to admit HIV and AIDS cases without discrimination as a policy. Discharge certificates should only refer to their opportunistic infections, without mention of HIV seropositivity, although the case sheet at the hospital keeps those records.
Concerted effort at the political level forms a large part of coherence in discourses. A definite positive start in this area is already evident. For example, former prime minister A. B. Vajpayee addressed Indian parliament acknowledging HIV and AIDS as one of the most serious health challenges facing the country. The present prime minister, Man Mohan Singh, followed this line and expressed serious concern about the spread of HIV and AIDS arguing to intensify prevention activities. In addition, he met business and industrial community members interested in addressing HIV and AIDS epidemic. These efforts point to coherence is societal discourses. Such leadership initiatives need to be followed by officials down the line of action chain.
Media needs to be an integral part of the overall coherent discourse. Responsible media messages highlighting HIV and AIDS individuals who want to come out in the open and are living successful lives is essential. Prosocial entertainment education programs to change and challenge existing notions of fear, denial and discrimination discourses on HIV and AIDS in India needs to be priority (Singhal & Vasanti, 2005). For example, an engaging story of a likeable heroine who, with her son’s support, takes a courageous stand to acknowledge her positive status can start a new debate.
Social learning from these engaging societal discourse strategies should be encouraged. For example, in Thailand the minister for tourism, public information, and mass communication, Mechai Viravaidya appeared on national television and took a sip of Coca-Cola from the same glass as a HIV positive child. This strategy had a tremendously de-stigmatizing influence on the Thais. India needs to create its own Viravaidya, Rock Hudson, or Magic Johnson in order to neutralize and engage the lay stigmatization discourses (Singhal, 2003).
Finally, possible channels for communicating risk and overcoming stigma of HIV and AIDS include traditional media that constitute puppet shows, music, and drama. These channels need to be used in conjunction with printed educational support materials on HIV/AIDS, one to one interpersonal communication, peer-education and discourses engaged by NGOs.
Disengaging HIV and AIDS discourses in India related to fear, denial, and stigmatization act as powerful barriers to the process of crisis and risk message interpretations. Any mechanism to reduce or engage these negative discourses needs to be embraced. A shift in developing crisis and risk communication messages that harmoniously engages multiple HIV and AIDS discourses in India is central to avoiding a catastrophic avoidable human tragedy like sub-Saharan Africa, where 15 million deaths have occurred since the beginning of the epidemic (Avert India, 2005). Likewise, successful crisis and risk communication efforts have to implicitly reflect and address several components of the HIV and AIDS discourses in India. A substantial reduction in stigmatization of people living with HIV/AIDS is a key to any efficient and successful crisis and risk communication effort.
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