"Susie, age 9" <nomail@noway.com> wrote in message

Show me that part. That should be easy, you said I did it.
Let me see you shine.

Show me that part. That should be easy too.
Come on now, no excuses.

If that were true, I could care less.
But back to what is at hand...

AVERT.ORGAVERT

From the moment scientists identified HIV and AIDS, social responses of fear, denial, stigma
and discrimination have accompanied the epidemic. Discrimination has spread rapidly, fuelling
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. Stigma 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, 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 there is 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 behaviours, for example, 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 widely exist, they often feed upon and reinforce dominant ideas of good
and bad with respect to sex and illness, and proper and improper behaviours.

Factors which contribute to HIV/AIDS-related stigma:

HIV/AIDS is a life-threatening disease
People are scared of contracting HIV
The disease's is associated with behaviours (such as sex between men and injecting drug-use)
that are already stigmatised in many societies
People living with HIV/AIDS are often thought of as being responsible for becoming infected
Religious or moral beliefs 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.
"My foster son, Michael, aged 8, was born HIV-positive and diagnosed with AIDS at the age of 8
months. I took him into our family home, in a small village in the south-west of England. At
first relations with the local school were wonderful and Michael thrived there. Only the head
teacher and Michael's personal class assistant knew of his illness.

"Then someone broke the confidentiality and told a parent that Michael had AIDS. That parent,
of course, told all the others. This caused such panic and hostility that we were forced to
move out of the area. The risk is to Michael and us, his family. Mob rule is dangerous.
Ignorance about HIV means that people are frightened. And frightened people do not behave
rationally. We could well be driven out of our home yet again." - 'Debbie' speaking to the
National AIDS Trust, UK, 2002

Sexually transmitted diseases are well known for triggering strong responses and reactions. In
the past, in some epidemics, for example TB, the real or supposed contagiousness of the disease
has resulted in the isolation and exclusion of infected people. 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 need to be fought)
HIV/AIDS as horror (e.g. in which infected people are demonised and feared)
HIV/AIDS as otherness (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 personally are
likely to be infected or affected.

Forms of HIV/AIDS-related stigma and discrimination
In some societies, laws, rules and policies can increase the stigmatisation 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 practises such
as the compulsory screening of 'risk groups', both furthers the stigmatisation of such groups
as well as creating a false sense of security among individuals who are not considered at
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 freedoms 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 those individuals who are infected appear abnormal and
exceptional.

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 neighbours 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 sexually transmitted diseases (STDs). Together with traditional
beliefs about sex, blood and the transmission of other diseases, these beliefs provide a basis
for the further stigmatisation 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 behaviour that resulted in their infection, whereas women are
not.

"My mother-in-law tells everybody, 'Because of her, my son got this disease. My son is a 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 them may abandon women living 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 importance of the role that the family plays in providing
support and care for people living with HIV/AIDS. However, not all family response is positive.
Infected members of the family can find themselves stigmatised 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 stigmatisation 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 easily available and affordable.

In poorer countries screening has also been reported as taking 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 stigmatised 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 fuelling such responses are ignorance and lack of
knowledge about HIV transmission.

"There is an almost hysterical kind of fear.at all levels, starting from the humblest, the
sweeper or the ward boy, up to the heads of departments, which makes them pathologically scared
of having to deal with an HIV-positive patient. Wherever they have an HIV patient, the
responses are shameful" - A retired senior doctor from a public hospital, currently working in
a private hospital, India

A survey conducted in 2002, among some 1,000 physicians, nurses and midwives in four Nigerian
states, returned disturbing findings. One in 10 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% thought a person's appearance betrayed his or her HIV-positive status, and 20% felt that
people living with HIV/AIDS had behaved immorally and deserved their fate. One factor fuelling
stigma among doctors and nurses is the fear of exposure to HIV as a result of 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% of persons living with HIV/AIDS in
India, 38% in Indonesia, and over 40% in Thailand said their HIV-positive status had been
revealed to someone else without their consent. Huge differences in practise 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 or suspected of having HIV may be
turned away from healthcare services, employment, refused entry to foreign country. 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 the year 2005, 40.3 million people were living with HIV or
AIDS and during the year 3.1 million died from AIDS-related illness. Combating the stigma and
discrimination against people who are affected by HIV/AIDS is as important as developing the
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 attitudes to 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 the fear based messages and biased social attitudes, in order to reduce the
discrimination and stigma of people who are living with HIV or AIDS.

Sources:
UNAIDS, AIDS epidemic update, December 2004
UNAIDS, AIDS epidemic update, December 2003
UNAIDS, HIV and AIDS-related stigmatization, discrimination and denial: forms, contexts and
determinants, June 2000
UNAIDS, India : HIV and AIDS-related stigmatization, discrimination and denial, August 2001
Edited by Jenni Fredriksson and Annabel Kanabus

Last updated November 25, 2005