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The burden of
stigma
by Jean Milligan and Daleh Dabbakeh
http://www.redcross.int/EN/mag/magazine2003_1/12-13.html
Stigma
and discrimination deny people living with HIV/AIDS the
treatment, care and support they need. They also contribute to
rising infection rates. Red Cross, Red Crescent highlights the
toll such prejudice can have on individuals struggling to live
productively with HIV/AIDS.
Few people with HIV/AIDS escape the stigma and discrimination
that often comes with the disease. When those who are infected
live on the fringes of society, their misfortune is perceived by
many people as punishment for errant lifestyles. Drug addicts,
sex workers, men who have sex with men bring the virus on
themselves, say those who deny our shared humanity. HIV-positive
people are driven underground as a consequence, fearing the
prejudice and intolerance of communities which are not prepared
to accept them. The epidemic continues unabated and soon becomes
everyone's problem.
And while stigma and discrimination may be invisible their
effects can be devastating. In some instances, they can cause
severe depression and despair in people with HIV/AIDS while
preventing others from getting tested and treated. A recent
UNAIDS report added, "they cause those at risk of infection and
some of those affected to continue practising unsafe sex in the
belief that behaving differently would raise suspicion about
their HIV-positive status."
Forced in the shadows
Ernst Stadgnizs knows about stigma. He is a 26-year-old
Latvian known for his interest in children's rights. He is not
shy about tackling problems of drugs and sexual abuse among
youth. He is quick to help others, but when the conversation
focuses on him he is quiet and hesitant. For this public figure
has been forced into the shadows himself, by the stigma of being
HIV-positive.
In the past couple of years, Latvia, and its Baltic neighbour
Estonia, have seen an explosive growth of HIV, with the vast
majority of new cases found among injecting drug users.
"Me, I worry about my mother," says Ernst. "Will she have
problems at work if I go public on my HIV? My little brother
does not know. How will he react when he learns? It is a very
lonely existence."
But the stigma of infection goes beyond
family worries. "The fear affects every part of your daily
life," he says, and even getting the right balance of
psychological and medical care is no easy matter. "There is
little psychological support in Latvia for people with HIV/AIDS.
I have the feeling that my doctors are uncomfortable about
treating someone who has it. They concentrate only on the
medical problems and offer no help when I am depressed about my
health. You feel everyone wishes you would just go away."
Universal condemnation
The United Nations Declaration of Commitment on HIV/AIDS puts
stigma and discrimination at the top of the agenda by calling
for strategies that "address the epidemic in forthright terms;
confront stigma, silence and denial; address gender — and
age-based dimensions of the epidemic; [and] eliminate
discrimination and marginalization". UNAIDS took up the call for
action and is leading a global campaign, "Live and let live", to
combat stigma.
The problem is that while civil and political leaders agree
more needs to be done to fight stigma, many are reluctant to
address it directly and be positive role models. The
consequences of this inaction can be seen in the rising
infection rates worldwide.
Those working hardest to bring about change are people living
with HIV/AIDS themselves. By organizing support groups they are
able to end their isolation and tackle the problem head on.
Ernst is a member of the Global Network for People Living with
HIV/AIDS (GNP+), a partner of the Federation. He receives
e-mails daily from people explaining the impact prejudice and
ignorance have had on their lives. He works with them to
overcome internalized stigma and develop the skills and
confidence to pursue productive lives. Contacts made through
GNP+, which works to improve the quality of life for people
living with the disease, remind Ernst how much still needs to be
done.
Taking the good with the bad
"My family ignores me. My father and brothers see me as a
burden," explains Tamara, a 37-year-old HIV-infected woman
living in Lebanon. Her support group is a refuge for her and a
small number of HIV positive people, providing psychological
(and sometimes financial support) to each other. It helps them
cope with the marginalization and rejection that often comes
with the disease. In addition, it has also formed a nucleus for
a movement that is gathering steam in a country (and a region)
where HIV-positive people have been facing widespread prejudice
and discrimination.
The group recently expanded its activities. "We began
discussing the rights of HIV-positive people," said Nadia
Badran, who runs the group for Soins Infirmiers et Developpement
Communautaire, a local non-governmental organization. This came
about after two group members were not allowed to carry out
their military service because of their seropositive status.
The military provides a card listing the reason why an
individual is unable to serve in the armed forces. This card has
to be presented with any employment application. In Lebanon,
this means lost opportunities and discrimination. To prevent
this, discussions were held with the armed forces' chiefs of
staff. "The meetings were very difficult," says Badran, "but we
were able to change the listing to the less discriminatory term
'incurable disease'." This is a good first step and the group is
now working to stop HIV/AIDS-related stigma and discrimination
in other areas of their lives.
But people living with HIV/AIDS cannot do
it alone. There needs to be a more universal effort to overcome
the many taboos and barriers that allow stigma and
discrimination to fuel the AIDS pandemic. It is clear that
silence, exclusion and isolation are limiting the care and
services needed by people living with HIV. They are also
increasing the spread of the infection as leaders remain timid
about prevention efforts. To combat them, the UNAIDS report
explains the challenge ahead: "Some 20 years into the epidemic,
with prejudice, stigma and discrimination still evident, the
time to act is now...There can be no substitute for concrete
steps to defend the rights of people with HIV/AIDS and to
promote better understanding of their needs."
The
truth
about AIDS… Pass it on
"The truth about AIDS...Pass
it on" campaign was launched on 8 May 2002. Today, over
80 National Societies have joined, organizing local activities
to raise awareness of HIV/AIDS related stigma and
discrimination. The campaign aims to challenge the ignorance and
fear associated with HIV, and educate the public on the
transmission and appropriate care of people living with the
disease.
To mark the launch of the campaign, the Iranian Red Crescent
mobilized an estimated 1 million volunteers throughout its 28
branches to disseminate its HIV anti-stigma message. On World
AIDS Day (1 December) 2002, the Argentine Red Cross organized
several activities including bicycle rides, marches, display
stands, dancing groups, concerts and theatre performances. The
Armenian Red Cross organized a seminar on AIDS prevention and
injecting drug use. In Equatorial Guinea, the National Society
conducted a door-to-door programme aimed at raising awareness
among the public.
During the second year, the goal is to
expand existing activities and increase the number of
participating National Societies. The hope is to have all
components of the Movement speak out against stigma and for
humanitarian values such as inclusion. For silence is no longer
an option for anyone including the Red Cross and Red Crescent.
As former South African president, Nelson Mandela, made clear:
"AIDS is a war against humanity. We need to break the silence,
banish the stigma and discrimination and ensure total
inclusiveness within the struggle against AIDS. If we discard
the people living with HIV/AIDS, we can no longer call ourselves
human
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