HIV and AIDS are intricately associated with stigma and discrimination, in part because the virus has historically been surrounded by mystery and fear. Individuals affected (or believed to be affected) by HIV and AIDS often experience rejection by their loved ones, health care providers, families, and communities.
The stigma related to HIV and AIDS is a universal phenomenon that works as a powerful tool of social control and is often used to marginalize those who are suffering from the disease. The stigma and fear that surrounds HIV and AIDS is one of the main barriers to ensuring that people infected with the illness receive proper treatment and care. Therefore it is crucial that the stereotypes and prejudices that surround the disease be actively challenged and dispelled. The fear of discrimination also continues to be an obstacle, preventing people from seeking treatment and/or admitting their HIV status.
The stigma relating to HIV and AIDS has been a poorly understood aspect of the HIV epidemic. Stigmatization and the marginalization of those living with the disease continue to pose challenges that prevent decisive action at the community, national and global level against the spreading of the virus. Unfortunately, the denial and shame associated with the virus continues to prevent an adequate response to reducing the stigma that surrounds the HIV and AIDS epidemic.
What is stigma and discrimination?
Stigma is defined as negative feelings, beliefs, and behaviour directed towards and individual or group due to a particular label or characteristic.i Stigmatizing attitudes are expressed towards individuals in a society who are believed to be "different," and who, because of their perceived difference, are treated poorly. Stigmatized attitudes are not constant; rather they are mutable and tend to change over time.ii An example would be the fact that in the beginning HIV was primarily associated with gay men, while today it is known that anyone, regardless of their sexual orientation, age, gender, socio-economic status, or ethnicity, can contract the disease.
According to the UNAIDS definition, discrimination refers to any form of arbitrary distinction, exclusion, or restriction affecting people because of their confirmed or suspected HIV positive status.iii Since stigma and discrimination are often combined with poverty, these two factors become the main barriers to prevention, care, and support needed by people who are affected by HIV and AIDS.
Where does stigma and discrimination relating to HIV and AIDS come from?
At the time when the first cases of HIV were diagnosed, there was little or no information available on the causes of the illness, the transmissibility or any effective treatment. Since the public knew that this was a fatal condition, these factors only helped to spread fear in society as individuals who belonged to high risk groups were shunned and stigmatized. When the HIV virus first began to spread in the 1980s, early media reports helped to reinforce stigma and discrimination as they referred to it as a gay disease, since some of the first reported cases of HIV infection were among gay men in New York and Los Angeles areas.iv In the beginning doctors and healthcare providers also reinforced these stereotypes by referring to HIV as "gay related immune deficiency" (GRID).v These reactions all helped to create stigma around the illness and the people affected by it.
HIV and AIDS related stigma stems from pre-existing prejudice and bias found in our society directed at marginalized groups such as: homosexuals, racial/ethnic minorities, current or former drug users, immigrants, and the impoverished. Unfortunately, these already vulnerable groups of people continue to be marginalized and mistreated as a result of stigma and discrimination.vi Since individuals who are infected with HIV and AIDS are often perceived as "other," this reinforces the misconception that HIV only happens to people who have done something either amoral or shameful to have contracted the illness.
What are some of the consequences of the stigma that surrounds HIV and AIDS?
HIV related stigmatization is expressed in various forms. It can have both physical manifestations like violence against those that are HIV positive and social expressions including exclusion and isolation of people living with HIV and AIDS.vii Stigma related to HIV and AIDS perpetuates discrimination against specific groups of people living with the virus, including men who have sex with men, sex workers, injection drug users, and migrant populations. Therefore it becomes crucial that people work to address the stigma that is associated with the virus. Speaking out against HIV and AIDS helps to challenge the discriminatory attitudes, practices, programs, and laws that continue to alienate and undermine the fight against AIDS.viii A failure to address the stigma that is associated with HIV and AIDS may discourage people from taking advantage of voluntary counselling and testing or seeking proper medication. Furthermore, carrying condoms may also be stigmatized since it may be interpreted that the person has loose morals. Stigma and discrimination, much like myths about HIV and AIDS, are created to provide an explanation as well as protection against an illness that many people still don't understand.
How does stigma affect access to healthcare?
The stigma associated with HIV and AIDS is so pervasive that it often prevents people infected with the virus from receiving adequate treatment and care. Stigma surrounding HIV and AIDS creates unfounded prejudices, as it breeds fear and discrimination towards people who are HIV positive. A recent study in China showed that a quarter of students in Beijing would be unwilling to take a class with someone who was HIV positive, though they were all aware of the fact that it was impossible to contract HIV from simply being in the presence of someone who had the virus.ix Because HIV positive people often experience discrimination, studies show that stigma can create feelings of isolation and shame, as well as feelings of inferiority in relation to self and others in people who are HIV positive.x
There are several short and long term consequences for people, including depression and in some extreme cases even suicide. Most often, however, people internalize the discrimination and stigma they experience by self limiting their capacity to fulfill their aspirations and life goals because of feelings of inadequacy, shame, and isolation.xi In addition, HIV related stigma is often also institutionalized and can result in loss of housing, employment, education, and/or access to healthcare. This further exacerbates the already existent anxiety and isolation that people who are HIV positive often experience.
People who are HIV positive face various challenges to receiving adequate healthcare, as either real or perceived stigma towards them is still common in the health sector. This type of stigma is manifested by people being refused admissions into hospitals or clinics, often also being denied treatment or experiencing delays in getting appointments, mandatory treatment, or check-ups.xii Stigma has also proven to be a hindrance to people in adopting preventative behaviour. Fear of moral judgments, discrimination and stigma are associated with an increased delay in seeking treatment for HIV and sexually transmitted diseases. Many people also fail to get themselves tested, or refuse to disclose their test results even when they know that they have engaged in risky sexual behaviour or are aware of being infected with the virus. This comes as a result of the fear of being stigmatized and discriminated against within their communities, if people were to find out that they were HIV positive. When a person is found to be HIV positive, the stigma and moral blame associated with the virus is so strong that it is frequently extended to the entire family.xiii
How are stigma and discrimination manifested?
Stigma related to HIV and AIDS is manifested through discrimination, ostracism, rejection, and the avoidance of people that are infected with AIDS, perceived to be infected or likely to be infected. It is also manifested against individuals, groups, and communities with whom individuals that are HIV positive interact. People affected by the illness are also often subject to violence, compulsory testing without consent or protection of confidentiality, quarantine of persons with HIV, and outright hostility in some circumstances.xiv
What are some strategies for reducing the stigma and discrimination associated with HIV and AIDS?
There exist several strategies that aim to reduce the stigma and fear that people living with HIV and AIDS experience. These include:
(1) Working to dispel myths and information dissemination to encourage people to seek Voluntary Counselling and Testing (VCT), while also working to overcome the fear and ignorance that surrounds HIV and AIDS.xv
(2) Helping to reduce the "felt stigma" among people infected with HIV and AIDS by organizing training programs on providing care, management, and methods to help cope with infection for those infected as well as creating support networks for their families.xvi
(3) Providing training for personnel in hospitals to ensure that HIV positive patients' rights to confidentiality and care are respected, in an effort to create HIV-patient friendly hospitals that are not discriminatory.xvii
(4) Working to eliminate existing social stereotypes and inequalities. Especially gender inequalities that compound the stigma and discrimination experienced by women and other vulnerable social groups like homosexuals, ethnic minorities, and the poor.xviii
(5) Encouraging greater involvement of people living with HIV and AIDS in policy formulation, so that their experiences become valued and respected. Increasing their political representation would also ensure that people living with HIV and AIDS have the same rights and possibilities to access healthcare, education and work as those not affected by the virus.xix
(6) Providing provisions of visible care in communities, including healthcare clinics, facilities, and support programs to increase access to medical treatment as well as effectively reduce stigma and discrimination.xx
(7) Emphasising combining counselling and information based approaches in order to break the cultural silence that is associated with HIV and AIDS. Also working to promote openness and support with the aim of creating dialogue to reduce stigma and discrimination.xxi
Some arts-based methods for reducing stigma:
- Digital story 1 (South Africa)
- Digital story 2 (southern Africa)
- Digital story 3 (southern Africa)
- Poster art (Namibia)
- Film (Canada)
- Puppetry (Jamaica)
- Song, music videos, and video animation (Sierra Leone)
- Storytelling (India)
- Television series "Bai Xing" (China)
- Television series "Sesame Street" (South Africa)
- Theatre (Ethiopia)
- Theatre (Thailand) – Part 1
- Theatre (Thailand) – Part 2
- more to come!
Some first-hand accounts of stigma:xxii