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AIDS Related Stigma

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    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

    Religious Condemnation

    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).

    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,

    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

    Conclusion

    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.

    
    References
    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).

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