AIDS Related Stigma Since the appearance of AIDS in the late seventies and early eighties, the disease has had attached to it a significant social stigma. This stigma has manifested itself in the form of discrimination, avoidance and fear of people living with AIDS (PLWAs). As a result, the social implications of the disease have been extended from those of other life threatening conditions to the point at which PLWAs are not only faced with a terminal illness but also social isolation and constant discrimination throughout society.
Various explanations have been suggested as to the underlying causes of this stigmatization. Many studies point to the relationship the disease has with deviant behavior. Others suggest that fear of contagion is the actual culprit. Examining the existing literature and putting it into societal context leads one to believe that there is no one cause. Instead, there would appear to be a collection of associated factors that influence society’s attitudes towards AIDS and PLWAs. As the number of people infected with HIV increases, social workers are and will be increasingly called upon to deal with and serve PLWAs.
Although not all social workers chose to work with PLWAs, the escalating incidence of HIV infection is creating a situation in which sera positive people are and will be showing up more often in almost all areas of social work practice. This paper aims to examine AIDS related stigma and the stigmatization process, hopefully providing insights into countering the effects of stigma and perhaps the possibility of destigmatization. This is of particular pertinence to the field of social work due to our growing involvement with the HIV positive population.
Association to Deviant/Marginal Behavior one of the most clearly and often identified causes of AIDS related stigma is its association to deviant behavior. The disease has had and still does have a strong association for many to homosexuality, IV drug use, sexual promiscuity and other sorts of sexual practice (O’Hare, et al. , 1996; Canadian Association of Social Workers, 1990; Quam, 1990 & Beauger, 1989). An especially strong association exists between homosexuality and AIDS. This is largely due to the fact that, in the early years of the disease, it was far more prevalent within the gay community and almost non-existent outside of it.
In fact, until 1982 the disease was referred to as GRID or Gay Related Immune Deficiency. Even today, AIDS is often referred to as “the gay plague” (Giblin, 1995). Even though AIDS is now far less prevalent in the homosexual community and increasingly more outside of it, this link still remains strong for many. Along with the historical context of AIDS, the media is partly to blame for this not so accurate association. The Canadian Association of Social Workers (1990) reports that, “often the media has not distinguished between ‘gay’ and ‘AIDS’, so that public understanding of homosexuality and AIDS has become enmeshed” (p. 10).
In recent years, the media has started to make more accurate distinctions between homosexuality and AIDS, but messages are still mixed and often ambiguous. The situation is quite similar in regard to IV drug use, prostitution, and other activities commonly associated with AIDS. This focus that the media has put on specific groups incorrectly places emphasis on high risk groups rather than high risk activities. As a result, the word AIDS alone conjures, for many, images of those who stray from what society deems normal behavior. Many of the groups to which AIDS is associated have long histories of stigmatization before the appearance of AIDS.
Homosexuals, in western culture, have almost always suffered the effects of being a stigmatized population. The same is true of prostitutes, IV drug users, and people of color (O’Hare, et al. , 1996; Giblin, 1995 & CASW, 1990). It is significant to mention colored populations, as the parts of the world that are most severely effected by AIDS, such as countries in Sub-Saharan Africa, South East Asia, and Haiti, are mostly populated by races other than Caucasian. As a result, a strong association has also been made between AIDS and people of color (Quam, 1990).
The fact that AIDS is associated with already stigmatized groups has two principal effects. First and most obvious, is that society’s negative attitudes towards the group in question are transferred to AIDS and PLWAs. Second, is an amplification of the existing negative feelings that society holds towards the groups associated with the disease (CASW, 1990). As a result, homosexuals, prostitutes, colored people and other groups associated to HIV infection are not only seen as deviant or undesirable, but also as potential carriers of the virus who are to be feared and avoided.
Some religious groups see AIDS as a punishment from God for sinful behaviour. As children, many people were told that of what could happen to them if they strayed from what their parents or religious doctrine considered appropriate behaviour. Quam (1990) writes, “Their parents and other parental authorities warned them that if they succumbed to pleasures of the flesh they would suffer dire consequences. Now AIDS would appear to fulfill such prophecies” (36). Such sentiment still exists publicly today.
When asked about his feelings about the AIDS epidemic, Jerry Falwell, a popular and quite influential televangelist said publicly, “When you violate moral, health, and hygiene laws, you reap the whirlwind. You can not shake your fist in God’s face and get away with it” (Giblin, 1995). Another factor influencing attitudes towards PLWAs is the fear of contagion. In fact, Bishop, Alva, Cantu, and Rittiman (1991) argue that this is a greater cause of stignatization than the association to deviant behaviour.
They found that many people expressed negative attitudes towards PLWAs regardless of how the virus was contracted or the person’s background. The fact that there is no known cure for AIDS and as of yet the disease always ends in death validates this fear for many. As people are becoming more aware of how the virus is transmitted, they seem to be become less fearful of PLWAs. However, people’s fear and avoidance of PLWAs is still greatly effected depending on the mode of transmission (Borchert & Rickabaugh, 1995).
In recent years, a distinction has been made in our society between what we consider to be innocent and deserving victims of AIDS. Society tends to classify people who contract AIDS through blood transfusions, their mother’s at birth, or other uncontrollable circumstances as innocent victims. On the other hand, homosexuals, IV drug users, the sexually promiscuous, and other ‘deviants’ are seen as deserving of the condition they are in when they contract AIDS. The common attitude held towards the ‘deserving victim’ is that of ‘you play, you pay’ (Quam, 1990).
This mentality leads to feelings of fear and hostility towards and a great lack of compassion for those who are incorrectly and irrationally deemed as being deserving of the disease. Borchert and Rickabugh (1995) found that greater levels of AIDS related stigma were expressed towards PLWAs who played an active role in the contraction of HIV. They noticed that people actually expressed quite sympathetic feelings towards people who played no active role in contraction, the innocent victims. It is only since the beginning of this decade that we have begun to notice this phenomenon.
In the past, no distinction was made regarding mode of transmission. In the 1980s, school children who had contracted HIV through blood transfusions were stigmatized almost as badly as homosexuals and often not even allowed to attend public schools. It was only after the highly publicized case of Ryan White that we saw the shift in attitudes and the formation of the innocent/deserving distinction (Giblin, 1995). Social Implications The effects of stigma for PLWAs are many. They suffer discrimination from the general public in a variety of settings, including work, school and within the health care environment.
In the early years of AIDS, many PLWAs were actually refused service in North American hospitals and some were fired from their jobs upon announcing that they had AIDS. The fact that the Canadian Human Rights Commission felt it necessary to specifically address HIV/AIDS discrimination is a good indicator as to what point it exists. Many PLWAs also experience extreme social isolation due to their illness; because of the negative reactions of friends and family members, the seropositive person is often rejected by many members of their social entourage (Giblin, 1995; Bishop, et al., 1991; CASW, 1990; l’Association des Medecines de Langue Francaise du Canada, 1990 & Quam, 1990).
The situation for PLWAs has changed somewhat in recent years. Legislation has been passed in both Canada and the United States making it illegal to discriminate against people for having AIDS. A major turning point occurred in the U. S. in 1990 after the highly publicized case of Ryan White. Ryan was a child with AIDS who was not permitted to attend public school due to his condition. Shortly after his death, a law was passed (the Ryan White Act) to try to prevent such discriminatory actions from happening again.
White’s story is not unique. At the same time that he was being excluded from public schools, a family with two seropositive children was forced to leave the Florida town they were living in after threats of violence and an arson fire in their home (Giblin, 1995 & Quam, 1990). At approximately the same time as U. S. legislation was passed, the Canadian government included AIDS under its human rights commission anti- discrimination laws. Although some things have changed and laws have been passed, the effects if stigma are still prevalent.
Many people still express feelings of fear and hostility towards PLWAs (O’Hare, et al. , 1996). Most of the negative attitudes felt and expressed are irrational but the effects can be devastating. One effect is people’s tendency to avoid all contact with PLWAs which contributes to social isolation. Also, even though legislation has been passed, discrimination still does exist.