HIV and AIDS

HIV was first diagnosed in 1983, after the revelation from research by Gallo and Montagnier (2003) that HIV is a leading cause of acquired immunodeficiency syndrome (AIDS). HIV is a retrovirus that attacks vital cells in the immune system, meaning that the body loses immune function, which leads to the development of AIDS (Meyer and Alder, 2013). The HIV transmission routes were revealed to be sexual intercourse, impure needles from drug use,  and HIV-positive mother-to-child transmission from childbirth or breast milk (WHO, 2003). Globally, 36.7 million people are currently living with HIV in 2016, however 76.1 million people have contracted HIV since its discovery (UNAIDS, 2017).

AIDs was defined in two medical frames which promoted the notion of ‘gay disease’; immune overload and a specific risk group (Conrad, 2007). The unknown disease, AIDs, emerged in 1982 through cases of homosexual males dying from it, which led to the construction of a name, ‘gay-related immune disorder’ (GRID) (Barnett and Whiteside, 2006). Epstein (1996) and Alder (2012) argue that, despite not knowing the causes or mode of transmission of AIDs, its construction as GRID was due to society’s perspective of the homosexual lifestyle as a deviance and forbidden, as they are “engaging in immoral behaviour” (Goode and Ben-Yehuda, 2009:111). Conrad (2007) explains that in the 1980s, scientists assumed that the cause of AIDs was immune deficiency stemming from the homosexual lifestyle, which was excessive “anal sex, multiple partners, and drug use” (Conrad, 2007:105). This led to a moral panic for the already deviant group: homosexual males (Goode and Ben-Yehuda, 2009), due to the mass media’s contribution to dehumanising homosexual males with the disease. This was shown in the New York Times headline, ‘rare cancer seen in 41 homosexuals’ (Altman, 1981). This kind of headline often accompanied GRID due to the supposed association with homosexual males, stigmatising them as a threat to ‘internal cohesion’ (Watney, 1997).

Nevertheless, the causes of AIDS were finally detected, which contradicts the notion of GRID as there were other risk groups that were diagnosed with AIDs: drug users, haemophiliacs, recipients of blood donations and children of infected mothers (Barnett and Whiteside, 2006; Conrad, 2007). Therefore, AIDS was no longer seen as GRID, and became more connected to a specific behaviour, rather than a specific group (Epstein, 1988), which triggered potential medical surveillance (Conrad, 2007).

Stigma is defined as a “negatively defined condition, attribute, trait or behaviour conferring ‘deviant’ status” (Gabe, Bury and Elston, 2004:68) and “a language of relationship…that stigmatises one type of possessor” (Goffman, 1986:3). Goffman (1986) divided stigma into three categories which can be applied to HIVs and AIDS: the ‘stigmatised’ who accept the stigma, meaning the person who has HIV, the ‘normals’ who do not accept the stigma, meaning people who do not have HIV, and the ‘wise’ who are within the normals but accept the stigmatised condition, for example HIV doctors, nurses and advocates. The stigma surrounding HIV and AIDS confirms labelling theory, due to the interactions between the normals and stigmatised people with HIV (Gabe, Bury and Elston, 2004). The interactions between the two opposing groups were volatile, due to society’s belief that it is a reckoning from God for committing a serious sin (Green, 2009), as “it is inherent in the very nature of the behaviour itself that homosexuals contract AIDS” (Goode and Ben-Yehuda, 2009:111). Due to the labelling of a person with HIV, they faced discrimination in employment, where gay men were fired, medical care as medical staff refused services to people with HIV, and death, as the bodies of people with HIVs were refused examinations and burials (Conrad, 2007; Weeks, 1993).

Stigma increases automatically when a person contracts HIV, as HIV’s transmission by bodily fluid, which is argued to be preventable (Green, 2009). The person with HIV would perform the ‘sick role’ which is defined as “ill individuals exempted or excluded from normal role responsibilities, will seek out and cooperate with medical help, be exempted from blame for their condition and, will wish to get better” (Crossley and Crossley, 1998:158). However, due to the stigma of the condition their sick role becomes either an illegitimate sick role or achieved deviance, as people with HIV are deemed to be responsible for their condition through sexual transmission, which challenges the notion of the sick role (Gabe, Bury and Elston, 2004; Dalton, 2017). Weiner (1985) argues that this deviance contributes to the negative stigma and emotions surrounding HIV and AIDs, as due to their responsibility they no longer have the additional privilege or rights as any other sick patients and become alienated from society (Parsons, 1951).

Beck (1992) explains that risk is associated with the crucial indications of a modern society, since risk is a universal issue, as a presence in wide variety of practices and experiences (Adam, Beck and van Loon, 2000). On a local scale, it emerged in existing procedures in areas of health, parenthood, crime, employment and transportation (Mythen, 2004). So, it can be argued that on a global scale, the epidemic of AIDs is highlighted by risk (Mythen, 2004). Nettleton (2013) argues that in order to prevent the development of HIV and AIDS, the risk must be identified and controlled, which revealed ‘unsafe’ sex as a risk factor. The lifestyle of unsafe sex then becomes politicised, as the notion of medical surveillance is brought into this as regulation and control of the body, since society tried to regulate lifestyle (Nettleton, 2013; Greco and Fraser, 2005).

Hart and Carter (2000) suggests that research into risk behaviour associated with HIV and AIDS is required and should be categorised into three main levels: micro, meso and micro. The macro level is to understand the HIV and AIDS risk by looking into the analysis of the political economy to understand the risks of HIV and AIDS (Nettleton, 2013). A macro example of HIV and AIDs would be the recognition of other risk groups such as drug users, haemophiliacs, recipients of blood donations and children of infected mothers, meaning that these risk groups were often a topic of social and economic forces that exceeded the individual, community or the country (Conrad, 2007; Nettleton, 2013).

The meso level is the notion of a ‘risk environment’, which is defined as environmental factors that increase the chance of HIV transmission (Nettleton, 2013), which is then supported by the social intervention of ‘community HIV prevention’ to reduce the chances of HIV transmission (Hart and Carter, 2000). A meso example would be that medical surveillance resulted in the closure of bathhouse, discussion about mandatory HIV tests and safe-sex guidelines for the gay communities (Conrad, 2007; Shilts, 1987). There were vast concerns about blood donations from homosexual men, which led to a lifetime ban from donating blood as a risk management (Conrad, 2007; Agerholm, 2017). This law was claimed to be justified as homosexual sexual activities, such as anal or oral sex, have a high risk of contracting a STD infection through unsafe sex (Give Blood, 2017). However, in 2011 the law was amended to allow homosexual men to donate blood under the condition that they have not engaged in sexual activities with another man for the last 12 months (Agerholm, 2017). Subsequently, in 2017 the law was amended again to change the duration of abstinence to 3 months (Give Blood, 2017).

The micro level studies social behaviour that is recognised as ‘risky’, focusing on the implications and explanations of the risk to confirm social and cultural norms that are acceptable (Nettleton, 2013). A micro example is that the homosexual lifestyle is identified as ‘risky’ and unacceptable, as their lifestyle is assumed to consist of “choice of sex partner, number of sexual acts, drug use, attendance of bathhouses” (Escoffier, 1998:13). Therefore, the historical association between AIDs and homosexuality and a homosexual lifestyle was shown to be medically problematic (Epstein, 1988).

There is no cure for HIVs or AIDs, since the misconception of AIDs as a disease resulted in medical neglect and medical surveillance of homosexual behaviour due to the lack of government funding and research for the first half of the 1980s (Conrad, 2007). However, a new treatment called anti-retroviral therapy (ART) for HIVs and AIDS surfaced in 1996 (Dalton, 2017). ART managed to contain HIV, while boosting the immune system to prevent potential infections (Green, 2006). ART led to a dramatic fall in AIDs cases and death related to AIDS since 1996, as the life expectancy for people with HIV taking this treatment increased between 1996 to 2005, which shows an improvement and overall success of ART (Alder, 2012; Hogg et al., 2008). This led to the notion of the ‘Lazarus effect’ which is the beneficial changes that ART gives to people with HIV, giving them a second chance in life (Scott and Constantine, 1999; Dalton, 2017). Due to this, HIV has been reclassified from a serious viral disease with no effective cure into a chronic and treatable illness that can be managed through strict regulation of complex medicines (WHO, 2003; Nettleton, 2013). Due to the reclassification, HIV is now medicalised as people with HIV have to be willing to enter into medical surveillance, for their bodies to be monitored and controlled constantly by doctors to ensure the efficiency and success of the treatment (Barnett and Whiteside, 2006; Rosengarten et al., 2004).

While ART improves life expectancy, it displays iatrogenesis side effects which are nausea, anaemia, pancreatitis, peripheral neuropathy (nerves in hands and feet are affected), diabetes, heart attacks, lipoatrophy (fat loss) and kidney stone (Green, 2006). The specific side effect, lipoatrophy, disfigures the body into a thin appearance, giving it an ill image (Huang et al., 2006). The side effect contradicts the notion of body project, as healthy bodies should be maintained and achieved, according to the biological and social occurrence in society to ensure the individuals’ self-identity (Shilling, 2003). Therefore, the body image of people with HIV carries a stigma that their disease reduces the quality of life, resulting in a potential barrier to future treatment and medical obedience (Reynolds et al., 2006). Ultimately, ART is a successful treatment, as it contains the disease and improves the immune system (Green, 2006). However, it can be argued that ART has allowed people with HIV’s bodies to be further controlled and observed by the medical system (Whiteside, 2006).

The other blog entries will explore the application of Illich’s theory to other case studies, such as men’s bodies and enhanced bodies. Subsequently, the conclusion will be evaluating whether if the medical imperialism is accurate, using the case studies as evidence to either support or reject Illich’s theory.

By Syeda T Fahin