2.1 INTRODUCTION
2.2.3 HIV-related stigma as a social phenomenon
An Africa-study synthesis compiled by scholars from Ethiopia, Tanzania, Vietnam and Zambia has tried to understand HIV and AIDS-related stigma (Ogden & Nyblade, 2005). They consider HIV-related stigma a social phenomenon involving the interplay between social and economic factors in the environment and the psycho-social issues of affected individuals. In their findings it becomes apparent that ignorance about the means of transmission plays a vital role in causing stigma. Values, norms, and moral judgment are other factors associated with the stigma. Unlike other diseases like cancer or diabetes, HIV and AIDS are associated with immorality (Moletsane, 2003). All these have negative consequences on people living with HIV and AIDS, as well as their families, and hinder treatment and prevention efforts (Ogden & Nyblade, 2005). The authors also concur with the idea that the three aspects of stigma which Goffman (1963)
2 Internalisation consists of a wide range of emotions or feelings e.g. feeling threatened, inadequate, lonely, anxious, insecure, and guilty (Donald et al., 2002).
distinguishes are related to HIV and AIDS. These are described as “abominations of the body” which for example could be physical deformities and disfigurements; “blemishes of individual character” such as mental disorders, addictions, and dishonesty; and “tribal identities” which of course refer to the race, nation, religion, and sex. Dovidio et al.
(2000, p.2) further identify six dimensions of stigmatising conditions which are concealability, course of the mark, disruptiveness, aesthetics, origin, and peril. The extent to which the stigmatising characteristic is necessarily visible, for example facial disfigurement versus homosexuality, is referred to as concealability. In the event of HIV, Alonzo and Reynolds (1995) illustrate the HIV-related stigma trajectory by showing that people are stigmatised differently depending on the state of the stigmatised. They explain that before you divulge your HIV status you are stigmatised in a different way from when you have divulged your status. Similarly, once you show symptoms of being ill you will be more stigmatised than when it is just known that you are infected. This shows that if HIV symptoms did not show, this disease would be less stigmatised. The issue of concealment and disclosure is intertwined. This explains the reason for people concealing HIV under the umbrella of other diseases which have similar clinical symptoms, but which are less stigmatised, that is, diabetes, cancer, or tuberculosis. In the South African context, in KwaZulu-Natal, most people would say a person has „idliso‟ (Govender, 2006) implying that a person has been poisoned. Those whose illnesses are invisible will be spared social rejection (Dovidio et al., 2000). HIV infected people have even been shown to conceal their HIV status at the cost of foregoing social support and medical treatment (Rintamaki & Weaver, 2008; Steinberg, 2008).
Another element relates to whether the „mark‟ becomes more salient or progressively debilitating over time. This is related to HIV stigma in that HIV is still seen by many as a terminal illness leading to death (Rimantaki & Weaver, 2008). HIV infection has degenerative effects and passes through several stages before it turns into AIDS (Acquired Immune Deficiency Syndrome). It differs from one individual to another and the outward symptoms may be frightening and associated with death. Some people may have several bouts before they die and some may only be ill once and die, which makes the duration of the illness indefinite. Some people can lie in hospital beds for months, causing families and friends no longer wanting to be associated with the HIV patient, and even leaving the body unclaimed in morgues (Campbell et al., 2005).
HIV and AIDS-related stigma have been perpetuated by religion and moral issues. In areas where religious institutions have influence, for example rural communities, greater stigmatisation is reported (Kalichman & Simbayi, 2004; Paruk, Mohamed, Patel, &
Ramgoon, 2006). HIV is stigmatised because of the moral denouncement of behaviours through which the virus is mainly transmitted, that is, sex.
Since its outbreak, the HI virus has been associated with “disenfranchised” social groups including gay men, drug users, and to some extent African and Latino Americans (Rintamaki & Weaver, 2008, p.69). The perception that the disease is unique to deviant groups may be misinforming and expose other people to danger of contracting the disease.
The stigmatising mark (congenital, accidental, or intentional) can also involve the person‟s responsibility for creating the mark. People living with HIV are thought to be responsible for having contracted HIV (Francis & Hemson, 2006) and associated with behaviours performed of one‟s own free will, for example sex workers and drug users (Rintamaki & Weaver, 2008). In some societies the disease is associated with behaviours such as prostitution and homosexuality and as a result the people are more stigmatised because the condition is not accidental. It is also seen to be a result of personal irresponsibility and it is believed that it can be avoided (Avert, 2008).
However, Alonzo and Reynolds (1995) note that individuals with the illness do not experience the same degree of stigma; there are also some who are regarded by society as „innocent‟ victims of HIV and AIDS. This includes children who contract HIV from their mothers, transfusion recipients, and rape victims, and thus they may be stigmatised less harshly.
Another dimension involves the perceived danger of the stigmatising condition to others. People are afraid of contracting this life threatening disease. Misperceptions about how the disease is contracted have existed since the beginning of the epidemic and this perpetuates the stigmatisation of the illness (Alonzo & Reynold, 1995;
Moletsane et al., 2007; Parker & Aggleton, 2003). Although it is becoming known that HIV can only be spread through blood transfusion, mother-to-child transmission, and through unprotected sex, HIV remains scary for most people. From time to time caregivers of HIV positive patients contract the disease from assisting their patients
without protection (Govender, 2006). A study conducted by Francis and Francis (2006) illustrates that people are afraid of HIV, often irrationally, so that whenever an HIV positive learner goes to the toilet the other learners would use Jeyes Fluid to „clean‟ the AIDS. Stigmatisation therefore also results from the perceived danger of the disease.
Studies show that some families chase away their family members or do not allow them to use utensils, while some couples break up (Avert, 2008).
In addition of the dimensions of stigma discussed above, Dovidio et al. (2000) argue that visibility and controllability are the most important dimensions of stigma for the stigmatiser and the stigmatised person. Similarly, UNAIDS (2008) in the guidelines for addressing causes of stigma and discrimination, identified three key causes, that is, linking people with HIV to behaviour that is considered to be improper and immoral;
fear of acquiring HIV through the everyday contact with the infected people; and a lack of awareness and knowledge about stigma and discrimination and its effects. This refers back to the suggestion by Campbell et al. (2005) that the issues of HIV and stigma should be addressed simultaneously. Understanding the dynamics of HIV and its effects could perhaps show which dimensions of stigma have to be addressed.
Alonzo and Reynolds (1995) conclude that HIV and AIDS are a manifestation of an extraordinary illness in terms of its potential for multidimensional stigmatisation.
Regarding the concept of discrimination, most of the literature suggests that stigma emanates from stigmatisation (Dovidio et al., 2000). Deacon (2005) contends that discrimination is a result of stigmatisation. She suggests that internalised stigma can be the result of discrimination which emanates from the HIV positive person expecting to be stigmatised and in that case the stigma and discrimination takes place vice versa.
Francis and Francis (2006) explain that discrimination is something people do to disadvantage people living with HIV; one of the effects of internalised stigma is discrimination that originates internally with the HIV positive person, without other people having to do anything to disadvantage them.