HIV AIDS Stigma and education

AIDS Stigma and Discrimination

AIDS stigma and discrimination exist worldwide, although they manifest themselves differently across countries, communities, religious groups and individuals. They occur alongside other forms of stigma and discrimination, such as racism, stigma based on physical appearance, homophobia or misogyny and can be directed towards those involved in what are considered socially unacceptable activities such as prostitution or drug use.

HIV/AIDS is a virus that is found in the body. Stigma is found in the thoughts of people and communities, when people believe that a particular illness, or something a person has done or feels, is shameful and brings disgrace on themselves, their family or their community. They believe that the person is bad and should be despised and avoided by the community.

Stigma not only makes it more difficult for people trying to come to terms with HIV and manage their illness on a personal level, but it also interferes with attempts to fight the AIDS epidemic as a whole. On a national level, the stigma associated with HIV can deter governments from taking fast, effective action against the epidemic, whilst on a personal level it can make individuals reluctant to access HIV testing, treatment and care.

People who are most seriously affected by the HIV/AIDS stigma are often those who were socially disadvantaged before they contracted HIV/AIDS. Women, youth, older people and the poor are often in this category of socially disadvantaged people. They also have the least power to resist or challenge stigma.
Even where HIV/AIDS affects members of more powerful groupings – men, or members of social elites with greater access to political or economic power – these people may end up being denied dignity and respect.


Why is there stigma around HIV/AIDS?

Fear of contagion coupled with negative, value-based assumptions about people who are infected leads to high levels of stigma surrounding HIV and AIDS.2

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

  • HIV/AIDS is a life-threatening disease, and therefore people react to it in strong ways.
  • HIV infection is associated with behaviours (such as homosexuality, drug addiction, prostitution or promiscuity) that are already stigmatised in many societies.
  • Most people become infected with HIV through sex, which often carries moral baggage.
  • There is a lot of inaccurate information about how HIV is transmitted, creating irrational behaviour and misperceptions of personal risk.
  • HIV infection is often thought to be the result of personal irresponsibility.
  • Religious or moral beliefs lead some people to believe that being infected with HIV is the result of moral fault (such as promiscuity or ‘deviant sex’) that deserves to be punished.
  • The effects of antiretroviral therapy on people’s physical appearance can result in forced disclosure and discrimination based on appearance.

The fact that HIV/AIDS is a relatively new disease also contributes to the stigma attached to it. The fear surrounding the emerging epidemic in the 1980s is still fresh in many people’s minds. At that time very little was known about the risk of HIV transmission, which made people scared of those infected due to fear of contagion.

From early in the AIDS epidemic a series of powerful images were used that reinforced and legitimised stigmatisation.

  • HIV/AIDS as punishment (e.g. for immoral behaviour)
  • HIV/AIDS as a crime (e.g. in relation to innocent and guilty victims)
  • HIV/AIDS as war (e.g. in relation to a virus which must be fought)
  • HIV/AIDS as horror (e.g. in which HIG positive people are demonised and feared)
  • HIV/AIDS as otherness (in which the disease is an affliction of those set apart)

HIV/AIDS-related S&D are most closely related to sexual stigma. This is because HIV is mainly sexually transmitted and in most areas of the world, the epidemic initially affected populations whose sexual practices or identities are different from the “norm.” HIV/AIDS-related S&D has therefore appropriated and reinforced pre-existing sexual stigma associated with sexually transmitted diseases, homosexuality, promiscuity, prostitution, and sexual “deviance” (Gagnon and Simon 1973; Plummer 1975; Weeks 1981). The belief that homosexuals are to blame for the epidemic or that homosexuals are the only group at risk of HIV is still common. Promiscuous sexual behavior by women is also commonly believed to be responsible for the heterosexual epidemic, regardless of the epidemiological reality. In Brazil, for example, where surveillance data have shown high rates of HIV infection among monogamous married women, HIV-positive
women are still widely perceived to be sexually promiscuous (Parker and Galvão 1996).

HIV/AIDS-related S&D are also linked to gender-related stigma. The impact of HIV/AIDS-related S&D on women reinforces pre-existing economic, educational, cultural, and social disadvantages and unequal access to information and services (Aggleton and Warwick 1999). In settings where heterosexual transmission is significant, the spread of HIV infection has been associated with female sexual behavior that is not consistent with gender norms. For example, prostitution is widely perceived as non-normative female behavior, and female sex workers are often identified as “vectors” of infection who put at risk their clients and their clients’ sexual partners. Equally, in many settings, men are blamed for heterosexual transmission, because of assumptions about male
sexual behavior, such as men’s preference or need for multiple sexual partners.

Race and ethnicity
Racial and ethnic S&D also interact with HIV/AIDS-related S&D, and the epidemic has been characterized both by racist assumptions about “African sexuality” and by perceptions in the developing world of the West’s “immoral behavior.” Racial and ethnic S&D contribute to the marginalization of minority population groups, increasing their vulnerability to HIV/AIDS, which in turn exacerbates stigmatization and discrimination.

The HIV/AIDS epidemic has developed during a period of rapid globalization and growing polarization between rich and poor (Castells 1996, 1997, 1998). New forms of social exclusion associated with these global changes have reinforced pre-existing social inequalities and stigmatization of the poor, homeless, landless, and jobless. As a result, poverty increases vulnerability to HIV/AIDS, and HIV/AIDS exacerbates poverty (Parker, Easton, and Klein 2000). HIV/AIDS-related S&D interacts with pre-existing S&D associated with economic marginalization. In some contexts, the epidemic has been characterized by assumptions about the rich, and HIV/AIDS has been associated with affluent lifestyles.

Fear of contagion and disease
HIV/AIDS is a life-threatening illness that people are afraid of contracting. The various metaphors associated with AIDS have also contributed to the perception of HIV/AIDS as a disease that affects “others,” especially those who are already stigmatized because of their sexual behavior, gender, race, or socioeconomic status, and have enabled some people to deny that they personally could be at risk or affected (UNAIDS 2000; Malcolm et al. 1998; Daniel and Parker 1993).
HIV/AIDS-related S&D is, therefore, the result of interaction between diverse pre-existing sources of S&D and fear of contagion and disease. The pre-existing sources, such as those related to gender, sexuality, and class, often overlap and reinforce one another. This interaction has contributed to the deep-rooted nature of HIV/AIDS-related S&D, limiting our ability to develop effective responses. It has also created a vicious circle of S&D (see Figure 2), which works in two ways.

First, because HIV/AIDS is associated with marginalized behaviors and groups, all individuals with HIV/AIDS are assumed to be from marginalized groups and some may be stigmatized in a way that they were not before. For example, in some settings, men may fear revealing their HIV status because it will be assumed that they are homosexual. Similarly, women may fear revealing their serostatus because they may be labeled as “promiscuous” or sex workers and stigmatized  as such.

Second, HIV/AIDS exacerbates the stigmatization of individuals and groups who are already oppressed and marginalized, which increases their vulnerability to HIV/AIDS, and which in turn causes them to be further stigmatized and marginalized.

Taking action in spite of stigma
Sometimes stigma seems too big to fight. It takes a lot of courage to stand up against the views and attitudes of your community or your friends. But here are some stories showing that brave people are already doing this and succeeding. They have realised that they can make a positive difference to the suffering of others and to the prevention of HIV/AIDS.

  • People living with AIDS are linking up with others who also have HIV/AIDS. Talking to someone who has the same experience and difficulties is a great comfort.
  • Other people have found support by joining groups such as the Treatment Action Campaign (TAC), which raises awareness about how stigma increases the helplessness of people living with AIDS. TAC works hard to create a setting where no-onefeels isolated or acted against.
  • In the rural community that was studied, a group of mostly unpaid women have formed a group of community health volunteers. They work with tremendous dedication and selflessness to help the most desperate households. They often walk long distances from one homestead to another to give assistance and are prepared to help in any way, even with washing ill people and their bedding, and collecting wood and water for suffering families. These women always offer kindness and comfort even if they are not received in a friendly way from families who do not want to admit that they have an AIDS sufferer in their home.
  • A growing number of individuals are starting to try and understand the way in which they either intentionally or unintentionally contribute to the problem of stigma. They are starting to look at the role that they can play in fighting stigma, even in the smallest ways. This can be done through the smallest of changes in how they think, feel and act in their own homes and neighborhoods, schools and workplaces, on public transport and in all the many places where stigma exists and grows.

Everyone has a role to play in getting rid of stigma, but clearly no person or group or community will be able to tackle all these causes alone or at the same time. Each group and individual needs to decide where they can best make a contribution. Where possible they should form alliances with others fighting stigma at other levels. But even when alliance building is not possible, every single individual has a role to play in trying to eliminate stigma from their own thoughts and feelings.



Originally posted at Jeff Allen’s blog

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