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 has 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 behaviour. 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 As the number of people infected with HIV increases, social workers are and will be increasingly called upon to deal with and serve PWAs.
Although not all social workers chose to work with PLWAs, the escalating incidence of HIV infection is creating a situation in which seropositive 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 behaviour. The disease has had and still does have a strong association for many to homosexuality, IV drug use, sexual promiscuity and other liberations of sexual practice (O’Hare, et al., 1996; Canadian Associacion 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 marginalized 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 deviate from what society.
Already Stigmatized Groups
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 been also been made between AIDS and 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.
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 Fear of Contagion 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).
Innocent V.S. Deserving Victims
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).
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, 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 publicised 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- 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. When asked about the treatment he received at Montreal General Hospital, an HIV positive patient explained that AIDS discrimination is far from being eradicated and that PLWAs are treated in a very negative fashion in many situations and environments (personal interview, 1997).
Implications for Social Work
Social workers are and will be called upon to serve clients with AIDS in almost all fields of practice. As the numbers of the HIV positive climb, PLWAs will be appearing in nearly every area that social workers practice and even if we do not desire or plan to work with this population we will be required to do so and unable to ignore the issues of PLWAs.
There are many ways in which social workers can address the issue of stigma, both in trying to alleviate its effects and actually working towards removing stigma in our society. What is disturbing, however, is that many social workers and social work students, when questioned, say that they do not want to have to come into contact with PLWAs and may even refuse to provide services to them (O’Hare, et al., 1996). Therefore a second issue that must be addressed is the attitudes of social workers.
Social Work Practice
One of the principal roles of the social worker is that of advocacy. This is of particular importance in relation to AIDS related stigma. As mentioned, PLWAs suffer from discrimination in a variety of settings. By exercising their role of client advocate, social workers can help to ensure that their clients receive the services they are entitled to and the proper, non-discriminatory treatment when possible. This includes advocating client rights within the health care system, whether it be in hospitals or CLSCs, within the legal system, and in community organizations. Along with advocacy, social workers can push for further changes in legislation and policy to protect the rights of PLWAs (CASW, 1990).
Social workers can help to alleviate the isolation experienced by PLWAs due to stigma through the establishing of support groups. There are two forms of support groups that can be very useful in countering feelings of isolation: groups for PLWAs and those for the PLWA along with members of their social entourage. In creating support groups of PLWAs, a social lieu can be created for those who otherwise have little social contact and it can give a chance for members to exchange coping strategies.
The drawback of this type of group is that, although it facilitates social interaction, it does not necessarily provide links to the non-seropositive population. Groups that include the person’s social entourage, such as family and friends, can be used to bridge gaps between the client and their social contacts that have been damaged due to AIDS related stigma. Skills that social workers already have in areas such as family counselling, combined with a knowledge of HIV/AIDS can help to facilitate this (CASW, 1990).
Social workers are in a position where they can educate and sensitize colleague, other members of the professional community and the general public about AIDS and AIDS related issues (O’Hare, et al., 1996). The social worker’s role of educator can serve to actually reduce AIDS related stigma. Much of the existing AIDS education material focuses on medical aspects of the disease and prevention. These are extremely important issues but education aimed at sensitizing the public to PLWAs themselves is hard to come by. Social workers can help in the developing of education programs aiming for sensitization and destigmatization.
Social Work Training and Education
Social work training and education is the key to ensuring that social workers adequately serve seropositive clients and successfully play a role in dealing with the issue of AIDS related stigma. The fact that many social workers express an unwillingness to work with PLWAs needs to be addressed. It should be noted, that according to the Social Work Code of Ethics, all social workers are obliged to serve all clients regardless their situation and have no right to refuse to serve a PLWA (CASW, 1990).
Considering that almost all social workers will at some point be asked to work with this population, it is important that they be sensitized to it and its related issues. Schools os social work and agencies that employ social workers can and should play a part in this process. University programs could make available specialized curriculum to address O’Hare, et al., 1996 feel that education for social workers is not enough and that experience is also essential. They write, “Although counselling and educational efforts that increase AIDS related knowledge can improve the general attitudes of social workers toward people with HIV and AIDS … the modest attitudinal or knowledge improvements wrought by these efforts do not ensure behavioural change … social experience may be a better teacher than educational efforts alone.” (57).
This is reinforced by the findings of Herek and Capitanio (1997) who determined that contact with PLWAs is the strongest variable in lowering AIDS related stigma. Currently, many schools of social work provide no opportunity for students to come into contact with PLWAs. Stages in the field of HIV/AIDS could be provided and perhaps even be made mandatory. This may not seem realistic to suggest mandatory practicum, but taking into account the high possibility that social workers will come into contact with PLWAs in their careers, it is.
With an understanding of the issue of AIDS related stigma, it is essential for the field of social work to address this issue. It is one of the many aspects of the HIV infection that PLWAs must face and also one of the many with which social workers can provide assistance. There are a variety of reasons for why this stigma exists and it is necessary to have some understanding of them in order to combat discrimination and the negative attitudes that surround AIDS.
With the knowledge of how the stigma has been formed, it is possible to try and counter its effects and to educate the public in order to possibly lower the levels of present stigma. Before social workers can be truly effective, however, it is necessary that education and training practices are modified to sensitise present and future social workers to the issues surrounding AIDS. With the proper tools, social workers can facilitate changes in society and fight AIDS related stigma.
- Herek, G., M. & Capitanio, J., P. (1997). AIDS stigma and contact with persons with AIDS: effects of direct and vicarious contact. Journal of Applied Social Psychology, 27 (1).
- O’Hare, T., Williams, C., L. & Ezoviski, A. (1996). Fears of AIDS and homophobia: implications for direct practice and advocacy. Social Work, 41 (1)
- Borchert, J. & Rickabaugh, C. A. (1995). When illness is perceived as controllable: effects of gender and mode of transmission on AIDS related stigma. Sex Roles, 33 (9/10).
- Giblin, J., C. (1995). When Plague Strikes: the Black Death, Smallpox, AIDS. (117-187) New York: Harper Collins.
- Bishop, G., D., Alva, A., L., Cantu, L. & Rittiman, T., K. (1991). Responses to persons with AIDS: fear of contagion or stigma?. Journal of Applied Social Psychology, 21 (23) 1877-1888.
- Quam, M., D. (1990). The Sick Role, Stigma and Pollution: the Case of AIDS. In Feldman, D., A. (Ed.), Culture and AIDS. (pp. 29-43). New York: Praeger.
- Canadian Association of Social Workers. (1990). Preparing For HIV and AIDS: Resource Kit for Social Workers. Ottowa: Health and Welfare Canada.
- L’Association des Medecines de Langue Francaise du Canada (Ed.). (1990). Le SIDA: un Nouveau Defi Medicale. (pp. 255-270). Ottowa/Quebec: Bibliotheque Nationale du Quebec & Bibliotheque Nationale du Canada.
- Beauger, M., Dupuy-Godin, M & Jumelle, Y. (1989). AIDS a clinical approach. The Social Worker. 57 (1).