American Center Bulletin
December 2005
December 2005 - HIV & Aids - Stigma and Discrimination
From the moment scientists identified HIV and AIDS, social responses of fear, denial, stigma and discrimination have accompanied the epidemic. Discrimination has spread rapidly, fueling anxiety and prejudice against the groups most affected, as well as those living with HIV or AIDS. It goes without saying that HIV and AIDS are as much about social phenomena as they are about biological and medical concerns. Across the world, the global epidemic of HIV/AIDS has shown itself capable of triggering responses of compassion, solidarity and support, bringing out the best in people, their families and communities. But the disease is also associated with stigma, repression and discrimination, as individuals affected (or believed to be affected) by HIV have been rejected by their families, their loved ones and their communities. This rejection holds as true in the rich countries of the north as it does in the poorer countries of the south.
Stigma is a powerful tool of social control. It can be used to marginalize, exclude and exercise power over individuals who show certain characteristics. While the societal rejection of certain social groups, e.g. homosexuals, injecting drug users and sex workers, may predate HIV/AIDS, the disease has, in many cases, reinforced this stigma. By blaming certain individuals or groups, society can excuse itself from the responsibility of caring for and looking after such populations. This is seen not only in the manner in which outsider groups are often blamed for bringing HIV into a country, but also in how such groups are denied access to the services and treatment they need.
Why Is There Stigma Related to HIV and AIDS?
In many societies, people living with HIV and AIDS are often seen as shameful. In some societies the infection is associated with minority groups or behavior, such as homosexuality. In some cases, HIV/AIDS may be linked to perversion and those infected will be punished. Also, in some societies, HIV/AIDS is seen as the result of personal irresponsibility. Sometimes, HIV and AIDS are believed to bring shame upon the family or community. And whilst negative responses to HIV/AIDS unfortunately exist widely, they often feed upon and reinforce dominant ideas of good and bad with respect to sex and illness, and proper and improper behavior.
Factors which contribute to HIV/AIDS-related stigma:
• HIV/AIDS is a life-threatening disease
• People are scared of contracting HIV
• The disease’s association with behavior (such as sex between men and injecting drug-use) that is already stigmatized in many societies
• People living with HIV/AIDS are often thought of as being responsible for becoming infected
• Religious or moral beliefs that lead some people to believe that having HIV/AIDS is the result of moral fault (such as promiscuity or deviant sex) that deserves to be punished
Sexually-transmitted diseases (STDs) are well known for triggering strong responses and reactions. From early in the AIDS epidemic a series of powerful images were used that reinforced and legitimized stigmatization.
• HIV/AIDS as punishment (e.g. for immoral behavior)
• 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 needs to be fought)
• HIV/AIDS as horror (e.g. in which infected people are demonized and feared)
• HIV/AIDS as otherness (e.g. in which the disease is an affliction of those set apart)
Together with the widespread belief that HIV/AIDS is shameful, these images represent ready-made but inaccurate explanations that provide a powerful basis for both stigma and discrimination. These stereotypes also enable some people to deny that they may personally be infected or affected.
HIV/AIDS-Related Stigma and Discrimination
In some societies, laws, rules and policies can increase the stigmatization of people living with HIV/AIDS. Such legislation may include compulsory screening and testing, as well as limitations on international travel and migration. In most cases, discriminatory practices such as the compulsory screening of risk groups, both further the stigmatization of such groups as well as create a false sense of security among individuals who are not considered high risk. Laws that insist on the compulsory notification of HIV/AIDS cases, and the restriction of a person’s right to anonymity and confidentiality, as well as the right to movement of those infected, have been justified on the grounds that the disease forms a public health risk.
Perhaps as a response, numerous countries have now enacted legislation to protect the rights and freedom of people living with HIV and AIDS and to safeguard them from discrimination. Much of this legislation has sought to ensure their right to employment, education, privacy and confidentiality, as well as the right to access information, treatment and support.
Governments and national authorities sometimes cover up and hide cases, or fail to maintain reliable reporting systems. Ignoring the existence of HIV and AIDS, neglecting to respond to the needs of those living with HIV infection, and failing to recognize growing epidemics in the belief that HIV/AIDS "can never happen to us" are some of the most common forms of denial. This denial fuels AIDS stigma by making infected individuals appear abnormal.
Stigma and discrimination can arise from community-level responses to HIV and AIDS. The harassing of individuals suspected of being infected or of belonging to a particular group has been widely reported. It is often motivated by the need to blame and punish and in extreme circumstances, can extend to acts of violence and murder. Attacks on men who are assumed gay have increased in many parts of the world, and HIV and AIDS-related murders have been reported in countries as diverse as Brazil, Colombia, Ethiopia, India, South Africa and Thailand. In December 1998, Gugu Dhlamini was stoned and beaten to death by neighbors in her township near Durban, South Africa, after speaking out openly on World AIDS Day about her HIV status.
Women and Stigma
The impact of HIV/AIDS on women is particularly acute. In many developing countries, women are often economically, culturally and socially disadvantaged and lack equal access to treatment, financial support and education. In a number of societies, women are mistakenly perceived as the main transmitters of STDs. Together with traditional beliefs about sex, blood and the transmission of other diseases, these beliefs provide a basis for the further stigmatization of women within the context of HIV and AIDS.
HIV-positive women are treated very differently from men in many developing countries. Men are likely to be excused for their behavior that resulted in the infection, whereas women are not.
"My mother-in-law tells everybody, ‘Because of her, my son got this disease. My son is simple, as-good-as-gold – but she brought him this disease’."
– HIV-positive woman aged 26, India
In India, for example, the husbands who infected their wives may abandon them leaving them to live alone with HIV or AIDS. Rejection by wider family members is also common. In some African countries, women, whose husbands have died from AIDS-related infections, have been blamed for their deaths.
Families
In the majority of developing countries, families are the primary caregivers to sick members. There is clear evidence of the important role that family plays in providing support and care for people living with HIV/AIDS. However, not all family response is positive. Infected family members can find themselves stigmatized and discriminated against within the home. There is also mounting evidence that women and non-heterosexual family members are more likely to be badly treated than children and men.
"My mother-in-law has kept everything separate for me – my glass, my plate, they never discriminated like this with their son. They used to eat together with him. For me, it’s ‘don’t do this’, or ‘don’t touch that’ and even if I use a bucket to bathe, they yell‘wash it, wash it’. They really harass me. I wish nobody comes to be in my situation and I wish nobody does this to anybody. But what can I do? My parents and brother also do not want me back."
– HIV-positive woman aged 23, India
Employment
While HIV is not transmitted in the majority of workplace settings, the supposed risk of transmission has been used by numerous employers to terminate or refuse employment. There is also evidence that if people living with HIV/AIDS are open about their infection status at work, they may well experience stigmatization and discrimination by others.
"Nobody will come near me, eat with me in the canteen, nobody will want to work with me, I am an outcast here."
– HIV positive man aged 27, India
Pre-employment screening takes place in many industries, particularly in countries where the means for testing are available and affordable.
In poorer countries screening has also been reported to have taken place, especially in industries where health benefits are available to employees. Employer-sponsored insurance schemes providing medical care and pensions for their workers have come under increasing pressure in countries that have been seriously affected by HIV and AIDS. Some employers have used this pressure to deny employment to people with HIV or AIDS.
"Though we do not have a policy so far, I can say that if at the time of recruitment there is a person with HIV, I will not take him. I’ll certainly not buy a problem for the company. I see recruitment as a buying-selling relationship. If I don’t find the product attractive, I’ll not buy it."
– A Head of Human Resource Development, India
Health Care
Many reports reveal the extent to which people are stigmatized and discriminated against by health-care systems. Many studies reveal the reality of withheld treatment, non-attendance of hospital staff to patients, HIV testing without consent, lack of confidentiality and denial of hospital facilities and medicines. Also fueling such responses are ignorance and lack of knowledge about HIV transmission.
A survey conducted in 2002 among some 1000 physicians, nurses and midwives in four Nigerian states, returned disturbing findings. One in ten doctors and nurses admitted having refused to care for an HIV/AIDS patient or had denied HIV/AIDS patients admission to a hospital. Almost 40 percent thought a person’s appearance betrayed his or her HIV-positive status, and 20 percent felt that people living with HIV/AIDS had behaved immorally and deserved their fate. One factor fueling stigma among doctors and nurses is the fear of exposure to HIV due to a lack of protective equipment. Also at play it appears, was the frustration at not having medicines for treating HIV/AIDS patients, who therefore were seen as doomed to die.
Lack of confidentiality has been repeatedly mentioned as a particular problem in health-care settings. Many people living with HIV/AIDS do not get to choose how, when and to whom to disclose their HIV status. When surveyed recently, 29 percent of persons living with HIV/AIDS in India, 38 percent in Indonesia, and over 40 percent in Thailand said their HIV-positive status had been revealed to someone else without their consent. Huge differences in practice exist between countries and between health-care facilities within countries. In some hospitals, signs have been placed near people living with HIV/AIDS with words such as "HIV-positive" and "AIDS" written on them.
The Way Forward
HIV-related stigma and discrimination remains an enormous barrier to effectively fighting the HIV and AIDS epidemic. Fear of discrimination often prevents people from seeking treatment for AIDS or from admitting their HIV status publicly. People with AIDS or suspected of being HIV-positive may be turned away from health-care services or employment. In some cases, they may be evicted from home by their families and rejected by their friends and colleagues. The stigma attached to HIV/AIDS can extend into the next generation, placing an emotional burden on those left behind.
Denial goes hand-in-hand with discrimination, with many people continuing to deny that HIV exists in their communities. Today, HIV/AIDS threatens the welfare and well-being of people throughout the world. At the end of 2004, 39.4 million people were living with HIV or AIDS and during the year, 3.1 million died from AIDS-related illnesses. Combating stigma and discrimination against people who are affected by HIV/AIDS is as important as developing medical cures in the process of preventing and controlling the global epidemic.
So how can progress be made in overcoming this stigma and discrimination? How can we change people’s attitudes towards AIDS? A certain amount can be achieved through the legal process. In some countries, people who are living with HIV or AIDS lack knowledge of their rights in society. They need to be educated so they are able to challenge the discrimination, stigma and denial that they meet in society. Institutional and other monitoring mechanisms can enforce the rights of people living with HIV or AIDS and provide powerful means of mitigating the worst effects of discrimination and stigma.
However, no policy or law can alone combat HIV/AIDS-related discrimination. The fear and prejudice that lies at the core of the HIV/AIDS discrimination needs to be tackled at the community and national levels. A more enabling environment needs to be created to increase the visibility of people with HIV/AIDS as a normal part of any society. In the future, the task is to confront fear-based messages and biased social attitudes in order to reduce the discrimination and stigma of people who are living with HIV or AIDS.
The American Center acknowledges the following web sites in compiling the essay.
http://www.avert.org/aidsstigma.htm
http://www.un.org/esa/socdev/enable/disiddp.htm
December 3, 2005: International Day of Disabled Persons
How the Day May Be Observed
Involve: Observance of the day provides opportunities for participation by all interested communities – governmental, nongovernmental and the private sector – to focus upon catalytic and innovative measures to further implement international norms and standards related to persons with disabilities. Schools, universities and similar institutions can make particular contributions with regard to promoting greater interest and awareness among interested parties of the social, cultural, economic, civil and political rights of persons with disabilities.
Organize: Hold forums, public discussions and information campaigns in support of the day focusing on disability issues and trends and ways and means by which persons with disabilities and their families are pursuing independent lifestyles, sustainable livelihoods and financial security.
Celebrate: Plan and organize performances everywhere to showcase and celebrate the contributions by persons with disabilities to the societies in which they live, and convene exchanges and dialogues focusing on the rich and varied skills, interests and aspirations of persons with disabilities.
Take Action: A major focus of the day is practical action to further implement international norms and standards concerning persons with disabilities and to further their participation in social life and development on the basis of equality. The media has an especially important contribution to make by observance of the day. More importantly, the media can participate throughout the year by appropriately presenting progress and obstacles met in implementing disability-sensitive policies, programs and projects that promote public awareness of the contributions by persons with disabilities.
A Word from the Center
I watch a lot of news about avian flu. It’s a frightening disease, and I’m glad it’s getting adequate media attention. But then I think about the endemic we already have – over 25 million deaths from AIDS since 1981, versus avian flu’s total of 61 deaths – and I wonder how HIV/AIDS doesn’t lead all the headlines, every hour of every day, until this catastrophe is stopped.
Stigma thrives in the dark. When no one talks about an issue – whether out of social decorum, fear, or simply from feeling HIV is "over" or "already covered" – misinformation breeds. HIV victims are still twice-afflicted: with the disease, and with other people’s ignorance. The cure for the disease is still elusive. The cure for the second plague is bracingly simple: sunlight. We can fight stigma by dragging the issue into the open air, and insisting – forcefully, if need be; impolitely, if required – that people confront it. If you say you want to help victims of HIV/AIDS, keep talking. Loudly.
Ruth Bennett
Deputy Director
Notes from the AIRC
A Select Webliography on HIV/AIDS
http://www.aidsaction.org/
AIDS Action
http://www.aids-alliance.org/aids_alliance/index.html
AIDS Alliance for Children, Youth & Families
http://www.aidsetc.org/
AIDS Education and Training Centers – National Resource Center
ttp://www.thebody.com/
The Body – The Complete HIV/AIDS Resource
http://www.globalaidsalliance.org/
Global AIDS Alliance
http://www.hopkins-aids.edu/
John Hopkins AIDS Service
http://www.unaids.org/en/default.asp
Joint United Nations Programme on HIV/AIDS
http://www.nlm.nih.gov/medlineplus/aids.html
Medline Plus – A Service of the U.S. National Library of Medicine and the National Institutes of Health
http://www.napwa.org/
National Association of People with AIDS (U.S.)
http://www.nih.gov/od/oar/
National Institutes of Health – Office of AIDS Research
http://www.nmac.org/home/
National Minority AIDS Council
http://www.samhsa.gov/Matrix/matrix_HIV.aspx
Substance Abuse & Mental Health Services Administration – Services for HIV/AIDS and Hepatitis
http://www.cdc.gov/nchstp/od/gap/default.htm
Centers for Disease Control and Prevention – Global AIDS Program
http://www.aidsinfo.nih.gov/
U.S. Department of Health and Human Services – AIDS Info
http://hab.hrsa.gov/
U.S. Department of Health and Human Services – HIV/AIDS Bureau
http://usinfo.state.gov/gi/global_issues/hiv_aids.html
U.S. Department of State’s Bureau of International Information Programs – HIV/AIDS
http://www.fda.gov/oashi/aids/hiv.html
U.S. Food and Drug Administration – HIV and AIDS
http://hivinsite.ucsf.edu/InSite
University of California San Francisco School of Medicine – HIV InSite
http://www.whitehouse.gov/infocus/hivaids/
The White House – Office of National AIDS Policy
Note: The listing of non-U.S. Government Internet sites in this bulletin should not be construed as an endorsement of the views contained therein.
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