Out of sight and out of mind

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Shutting your eyes won't make the problem go away, as Tracy Barnes explains.

One of this year's themes for World AIDS Day is Out of sight - Out of Mind - Stigma and Complacency. The year 2000 saw the highest number of new infections since recording began. Improvements in treatments has lead to people with HIV living longer, with much improved health. Evidence points to increased complacency.

Unprotected sex is indicated in increased infections of HIV and other STIs. The significant number of teenage pregnancies are a good indicator of the problem of unprotected teenage sex.
This article is predominantly based on the findings of the "HIV and AIDS-related stigmatisation, discrimination and denial: forms, contexts and determinants"; report published by UNAIDS in June 2000. The report was commissioned to explore the roots of HIV/AIDS-related stigma, discrimination and denial and to provide some insight into the experience of HIV-positive people.

Stigma is probably the biggest barrier to combating the HIV epidemic - creating and supporting an environment that fosters new infections, reluctance to testing and disclosing status and reluctance to access treatment, care and support, subsequently impacting at both an individual and societal level.

Worldwide, the HIV epidemic has brought out the best and the worst in people. The best has been seen in the solidarity, support and care for people living with HIV and AIDS. The worst has been seen in the way individuals and groups have been stigmatised and marginalised by individuals, communities and institutions, usually as a consequence of ignorance or fear of a perceived threat.

Stigma associated with HIV/AIDS has resulted in serious and often tragic consequences, denying people living with HIV/AIDS access to treatments, services and support as well as making it hard for prevention work to take place.

Erving Goffman (1963), a prominent sociologist, defined stigma as a "significantly discrediting" attribute possessed by a person with an "undesired difference".

Stigma does not exist naturally, it is created by individuals and by communities and underpins the process of devaluation and discrimination.

Historically, the real or supposed contagiousness of a disease has resulted in the isolation and exclusion of those infected. Sexually transmitted infections in particular are notorious for triggering negative responses and reactions.

HIV/AIDS-related stigma builds upon and reinforces existing prejudices. It also plays into, and strengthens, existing social inequalities - especially those of gender, sexuality and race.
While certain social groups such as homosexuals, injecting drug users, sex workers and migrants have experienced stigma for some time, the emergence of HIV/AIDS has reinforced the established stigma.

Factors which contribute to HIV/AIDS-related stigma include:

HIV/AIDS is a life-threatening disease;
People are afraid of contracting HIV;
The disease has been associated with already stigmatised behaviours (e.g. homosexuality and injecting drug use)
People living with HIV are often considered responsible for contracting the disease
The moral or religious belief that sees HIV/AIDS as a result of deviance that is deserving of punishment

Stigma can be distinguished between felt and enacted stigma. Feelings individuals hold about their condition and the anticipated reactions of others is far more prevalent than enacted stigma, which refers to the action of stigmatisation and discrimination.
Evidence has shown that stigma exists and operates at several levels, but is felt most harshly by individuals. Stigma creates environments whereby individuals feel devalued, ashamed and subsequently isolated. In extreme cases individuals may withdraw completely, with significant implications for mental health, sometimes resulting in suicide.

Stigmatising environments discourage individuals to present for testing, disclosure, treatment, care and support: this impacts both at an individual and societal level.

In addition, stigma creates environments that significantly hinder the effectiveness of health promotion and prevention activities. Individuals who identify themselves as not belonging to the 'stigmatised' group consequently may not consider themselves vulnerable and therefore ignore or reject information and actions designed to safeguard individual and public health. Those who belong to marginalized and/or minority groups may also worry about the reactions of others, regardless of their status.

Stigma assigned to women is particularly acute in some communities. All too often women are economically, culturally and socially disadvantaged with inequitable access to treatment, financial support and education. Historically women have often been perceived as the main vectors of sexually transmitted infections.

HIV-positive women in developing countries are likely to be treated very differently to HIV-positive men. In India HIV-positive women are often blamed and abandoned by their husbands and wider family members. Reports of African women being blamed for the deaths of their HIV-positive husbands, often resulting in eviction from their home, are not uncommon either. In December 1998 Gugu Dhlamini was stoned and beaten to death by neighbours in her township near Durban, South Africa, after speaking openly on World AIDS Day about her HIV status. Not surprisingly, some women prefer to remain ignorant or secretive of their HIV-status.

As a consequence, individual denial of risk and vulnerability is not an uncommon response to the epidemic.

At a societal level laws, rules, policies and procedures may result in the stigmatisation of individuals. Legislation in various countries which has sought to control the actions of HIV-positive individuals have included:

Compulsory screening and testing of 'risk groups' and individuals;
The prohibition of HIV-positive individuals from certain occupations;
The medical examination, isolation, detention and compulsory treatment of infected individuals;
Limitations on international travel and migration;
The restriction of certain behaviours such as injecting drug
use and prostitution.

While restrictive and coercive measures are frequently undertaken to protect society from infection and are often justified in the interest of public health, they discriminate against those already infected. Experience has shown that such measures increase stigma and marginalisation and may lead to the increased social exclusion of those infected and those most vulnerable to infection.

Addressing Stigma and Discrimination

The human rights framework provides mechanisms for enforcing the rights of people living with HIV and AIDS. Freedom from discrimination is a fundamental human right founded on the principles of natural justice and applies to people everywhere. Non-discrimination is central to human rights legislation and practice.

The London Declaration on AIDS Prevention back in 1988 recognised that:

"Discrimination against, and stigmatisation of, HIV-infected people and people with AIDS and population groups undermine public health and must be avoided."

Between 1988 and 1991 subsequent resolutions from the World Health Assembly, the United Nations Centre for Human Rights and the United Nations General Assembly have all underpinned the need to discourage discrimination and stigmatisation experienced at a personal level and thus protect the human rights of affected individuals and groups. In addition, there has been increased recognition of the barrier stigma and discrimination can present to public health messages and activities and subsequent reduction in transmission rates.

In 1996 the United Nations Programme on HIV/AIDS and Office of the High Commissioner for Human Rights convened a consultation on HIV and human rights.

From this consultation 12 international guidelines on HIV/AIDS and human rights were drafted, the majority of which reiterated the need to promote and protect the rights of people living with and affected by HIV/AIDS.

The United Nations Commission of Human Rights Resolution 49/1999 reaffirms that:

Discrimination on the basis of HIV or AIDS status, actual or perceived, is prohibited by existing international human rights standards, and that the term 'or other status' in
non-discrimination provisions in international human rights texts should be interpreted to cover health status, including HIV/AIDS."

The resolution encourages states, UN agencies and treaty bodies,
inter-governmental organisations and non-governmental organisations to combat HIV-related discrimination, prejudice and stigma and to monitor and enforce HIV/AIDS human rights.
Stigmatising thoughts often lead people to the denial of services or entitlements to others, thus resulting in discrimination.

Discrimination occurs when a distinction is made against an individual or group and results in unfair and unjust treatment on the basis of their belonging, or being perceived to belong, to a particular group.

Stigma and subsequent discrimination often leads to the rights of those people living with HIV/AIDS and their families being violated.
People living with HIV may be stigmatised, not just because they are
HIV-positive but also by the way their status may be perceived by others. For example, perceptions that being HIV-positive may indicate promiscuity, homosexuality or criminal behaviour can result in a double stigmatisation.

Experience has shown that two complementary strategies are necessary to address both stigma and discrimination.

Strategies that prevent stigma or prejudicial thoughts being formed
Strategies that address or redress the situation when stigma persists.