The burden of stigma
by Jean Milligan and Daleh Dabbakeh
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
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
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
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."
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
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."
Jean Milligan and Saleh Dabbakeh
Jean Milligan is Federation editor of Red Cross, Red Crescent
Saleh Dabbakeh is Federation regional information officer
in Amman, Jordan.
"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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