Jean Dussault, member of the the Canadian HIV/Aids Legal Network
“Solidarity in Grief” is the title of this manual produced for teenagers in the Dominican Republic.
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I make love, I eat, I get dressed, I do the same things as everyone else. Is there a difference between me and them? Is there something on me which shows that I’m sick? I’m not a danger to anyone. Arsène
Tao, |
This young Zambian belongs to a nationwide network of anti-Aids clubs.
Discrimination
against people with Aids is a major obstacle to fighting the epidemic. The solution
lies in education
In her village
in Kwazulu-Natal, the South African province hardest hit by the Aids epidemic, Gugu
Dlamini died because of the disease. But it wasn’t the virus per se that killed her.
She was accused by fellow-villagers of having brought shame on the community by talking
publicly about being HIV-positive. When she was beaten by a neighbour who advised
her to keep quiet, she went to the police but they did nothing to protect her. The
next night, villagers attacked her house before stoning her and beating her to death.
While this story has gone round the world, there are other less bloody but just as
revealing tales that receive no attention. HIV-positive children are the targets
of other children’s angry parents who do their utmost to have them expelled from
the nursery or school or excluded from sports activities. Some doctors and dentists
refuse to treat people with Aids. Community help projects regularly come up against
the refusal of local inhabitants to have such “plague-stricken” people living in
their neighbourhood. Even dead, these people continue to instil fear, with some funeral
parlours refusing to accept their remains.
Victims of such discrimination are often poor and isolated.They do not dare complain
about how they are treated for fear of making things worse. The few statistics about
them hardly reflect the extent of the phenomenon.The number of known cases is just
the tip of the iceberg.
Marginalized
groups
As well as being frequently
ostracized by ordinary folk, HIV-positive people are sometimes also hit by discriminatory
laws. Using prevention as a pretext, governments adopt laws which violate the Universal
Declaration of Human Rights. Official public health programmes are sometimes the
source of violations. There are plenty of examples.
Blood tests have been made compulsory for certain “target populations” such as newborn
babies in New York state, prison inmates in at least 18 U.S. states and foreigners
wishing to stay more than 30 days in such countries as Egypt, Bulgaria and Georgia.
In some U.S. states, doctors are obliged to pass on to the authorities the names
of patients who have tested positive for HIV. As a rule, HIV-positive people are
refused entry to the United States.
In a collection of essays entitled “Ethics and Law in the Study of AIDS” (published
in 1992 by the Panamerican Health Organization), Katarina Tomasevski, an international
human rights expert, points out that “if one were to read the Universal Declaration
of Human Rights with the aim of finding out which human rights have been affected
by various responses to Aids, one would see that most, if not all, basic human rights
and freedoms, laid down as the common standard of achievement for humanity more than
40 years ago, have been challenged, violated, or denied in the context of HIV/Aids.”
Experts have pointed out in vain that no medical or public health reason justifies
measures restricting the rights of HIV-positive people. These measures are usually
ineffective and even counterproductive. And yet, discrimination continues.
Most ill people evoke compassion but Aids triggers the opposite reaction. The stigma
of HIV is tied to powerful social symbols, sources of prejudice and intolerance towards
groups which may vary from one country to the next but all share a common trait:
they are people who were marginalized even before the emergence of Aids. They include
immigrants, refugees, people in prison, male and female prostitutes, native peoples,
drug addicts and homosexuals. It is sometimes enough just to belong to one of these
so-called “risk” groups to be considered a “threat” and thus presumed guilty of spreading
the epidemic. People who help them are often regarded as their “accomplices”.
The world appears to be divided in two. On one side are people with Aids and those
who help them and on the other, those who imagine they are safe from the disease
and do not feel concerned. Some in the first group avoid health and social services
because of the stigma to which they are subjected and their fear of discrimination.
Those who most need help, information and education are thus forced underground which
makes them even more vulnerable. Some people refuse to be tested for Aids, preferring
not to know. Others keep their infection secret or else deny it.
People in the second group may be sticking their head in the sand like ostriches,
but they are not for that matter spared by the epidemic. Their self-defence mechanisms
feed their ignorance and create illusions that give them a false sense of security.
They think HIV only strikes at “risk” groups–sealed communities with which they have
no contact. Believing that HIV respects social frontiers makes them vulnerable in
turn. At an institutional level, such a belief slows down awareness programmes and
helps to reduce the funding they attract. So the stigma and discrimination that accompany
Aids are not only consequences of the epidemic but also contribute to its spread.
The late Jonathan Mann, who was head of the World Health Organization’s Special Programme
on Aids and of Harvard University’s François-Xavier Bagnoud Center, insisted
that human rights feature prominently in the campaign against HIV. Arguing that such
protection of ill or HIV-infected people was vital for ethical, judicial and practical
reasons, he stressed that a community could not deal effectively with the disease
if it failed to respect the basic right of people to have a say in decisions concerning
their own future.
Protecting
the victims
Although the stigma
of HIV/Aids is tied to ignorance, informing people about the virus and the risk of
catching it is not enough to eradicate it. Preventive education has to be accompanied
by serious education about discrimination, but this is still at an embryonic stage.
At the international level, health, legal and ethics experts, representatives of
communities affected by the disease and study groups have been insisting for several
years on the need to ensure that policies to reduce the spread of Aids and care for
its victims respect their rights and their dignity, whether they have the disease
or are just at risk. But the appeals of the experts will remain a dead letter without
broad public understanding and sufficient will, especially on the part of political
decision-makers.
The UN High Commission for Human Rights and UNAIDS in 1998 published 12 guidelines
for states on the rights of individuals concerning HIV/Aids. One of them recommended
laws to protect victims of discrimination in private and public sectors while guaranteeing
respect for privacy and confidentiality. Another focused on one of the sources of
discrimination and called on states to “promote the wide and ongoing distribution
of creative education, training and media programmes explicitly designed to change
attitudes of discrimination and stigmatization associated with HIV/Aids to understanding
and acceptance.”
The current gap between the quantity of recommendations and a sluggish bureaucracy
is glaring. In Aids prevention campaigns, the issue of discrimination often falls
by the wayside and is rarely discussed in schools. The odd educational film attacks
the stigma but no-one can boast of a broad awareness campaign that has an important
impact on society.
The main features of education against discrimination must be worked out in each
country according to the social context and the evolution of the disease. After the
targets and participants have been chosen, steps must be taken to create a friendlier
atmosphere for people who have Aids and who face rejection and indifference. This
must also be done for their families and friends as well as all those involved in
the fight against the epidemic. We must not forget that the disease is the enemy,
not the people who have it.
http://www.aidslaw.ca
