HIV & AIDS
Discrimination and Stigma
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 is there stigma related
to HIV and AIDS?
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.
which contribute to HIV/AIDS-related stigma:
HIV/AIDS is a life-threatening disease
are scared of contracting HIV
disease's is associated with behaviours (such as sex between
men and injecting drug-use) that are already stigmatised in
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.“
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
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)
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
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.
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.
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.
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
positive mother of three, abandoned by her husband because of
her infection status
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
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 -
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
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.
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
HIV-positive woman, aged 23, India -
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.
will come near me, eat with me in the canteen, nobody will want
to work with me, I am an outcast here. ”
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.
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 -
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 -
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.
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
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.
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
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.