AIDS Related Stigma Essay, Research Paper

Introduction

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

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 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

deems to be normal behaviour.

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

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.

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

get away with it? (Giblin, 1995).

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,

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 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-

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.

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

these issues.

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

perhaps not such a radical idea.

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.



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