[WCAR] HIV/AIDS, Stigma, Discrimination, and Racism

Exploring the Link: HIV/AIDS, Stigma, Discrimination, and Racism
A UNAIDS, WHO, HCHR panel
Sept. 5, 2001
Reported by Sarah Ford
Senior Director, Programs, Unitarian Universalist Service Committee (UUSC)
Member, Human Rights Education Steering Committee, Amnesty International USA

Panelists:
Mary Robinson, High Commissioner for Human Rights
Peter Piot, UNAIDS
Mercy Mahalemela, Community Development Training Center, South Africa
Barney Pityana, South Africa Human Rights Commission
Winnie Mpanju-Shumbusho, WHO
Peter Aggleton, UNAIDS
Nafis Sadik, Special Representative of the Sec. General

This session was a stark reminder of the terrible racial and gender
implications of the AIDS pandemic.  The panelists made clear that at the
UN, it is becoming increasingly clear that AIDS is a human rights
catastrophe.  The challenge is clear for human rights educators, at the
family, community, national, and international levels, to make the fight
against HIV a human rights struggle.

Mrs. Robinson began the session by saying that the greatest human rights
crisis facing the world today is HIV/AIDS.  She further stated that it is
known a respect for human rights reduces the spread of AIDS by addressing
the root causes of vulnerability to the disease: powerlessness, poverty,
racism, lack of education, homophobia, and gender disparities.  A human
rights approach to HIV must be grounded in all indivisible rights: civil,
political, economic, social, and cultural.  Knowing and exercising their
rights empowers families and communities to respond to the pandemic and
lessens the adverse impact those infected.  A multisectoral approach to
confronting and reducing stigma, the domination and exploitation of
women/girls, and poverty should be undertaken by civil society,
governments, business, people living with AIDS (PLWA) and youth.

UNAIDS and HCHR have worked closely together to address issues of stigma
and discrimination against PLWA.  At the special session in June, it was
agreed to address HIV/AIDS at the global, regional, national, and community
levels.  Mrs. Robinson ended by stating that HIV triggers widespread hate
and discrimination, often reinforcing existing prejudices, fears and
stereotypes based on gender, race, national origin, sexual orientation, and
economic status.

Dr. Peter Piot lamented the fact that, 20 years after the start of the
epidemic, there are still those who refuse to see HIV/AIDS as a human
rights crisis.  He believes that the global epidemic is evidence of
continued discrimination in the world, as the driving forces behind the
spread of HIV are stigma, discrimination, poverty, gender, and
racism.  Taboos against discussing sex, moral judgments, and stigma against
PLWA drives the disease underground, making HIV status a secret and
furthering the spread of the disease.  He urged that every HIV prevention
and treatment program tackle discrimination and stigma.

Dr. Piot expressed satisfaction and disappointment with the UN special
session on AIDS in June.  For the first time, AIDS as a human rights crisis
was discussed at the UN.  The disappointment came when the document was
finalized; the link between HIV and human rights was not made explicit, and
the references to sexual orientation were removed.  He feels, nonetheless,
that progress was made.

Dr. Piot outlined seven essential steps to addressing discrimination
against PLWA:
1.      Leadership is essential in the fight against HIV and against
discrimination.  No money can buy leadership, yet without it, AIDS rates
increase.  Political, religious, and civic leaders must speak out and end
the deadly silence, to put an end to shame and stigma.

2.      Supporting PLWA in their organizing to fight AIDS reduces
infections and improves living conditions for thousands of
people.  Advocacy for treatment and for equal treatment has and continues
to make a difference in the world.

3.      Document human rights violations by increasing the capacity of NGOs
and community based organizations to use a rights framework.  National
human rights commissions also fight against discrimination and human rights
abuses for PLWA, India, South Africa, and Ghana have used their human
rights commissions effectively to fight AIDS-related discrimination.

4.      A strong legislative environment is needed to enact and enforce
laws protecting the human rights of PLWA.  Civil society should reinforce
the laws, and parliamentarians, lawyers, and leaders of society need to
enforce the laws through judicial and legislative systems.

5.      Health and social services workers must be trained to reduce
discrimination and stigma based on age, gender, race, economic status, and
sexual orientation.  Services should be youth, especially girl,
friendly.  The focus must be on serving, not rejecting those living with
HIV/AIDS.

6.      Multisectoral approach at work, in health care settings, in
schools, in places of worship, etc., must be used to protect PLWA.  The
International Labor Organization has policies and guidelines to protect the
rights of HIV positive people in the workplace; many PLWA face increased
poverty when fired from their jobs due to their HIV status.

7.      Finally, responses to the AIDS epidemic must not inadvertently
promote stereotypes or stigma.  The World Food Program (WFP) learned that
their original efforts to provide food to AIDS orphans and families
affected by AIDS isolated these people from the community and left them
vulnerable to abuse.  Now, WFP assists entire communities.

Dr. Piot finished by reminding the group that the experience of the last 20
years shows the responses to the AIDS epidemic must be grounded in respect,
dignity, and human rights, as the only practical solution to eradicating
HIV.  AIDS is on the human rights agenda, and human rights are on the AIDS
agenda.

Speaking next, Dr. Sadik explored the intersection of gender and HIV.  She
noted that worldwide, AIDS death for women was outstripping that of men and
that the rate of death for adolescent girls is six times that of
boys.  Girls and women are more susceptible to HIV physically, and social
norms and harmful traditional practices contribute to their high rate of HIV.

Women/girls are vulnerable due to their low social status and unequal power
relations within the family or intimate partnerships, making it difficult
to negotiate sexual practices, including refusal or condom use.  Dr. Sakik
further stated that girls and women suffer the consequences of early
marriage, female genital mutilation, and exploitation for commercial sex
work, rape, and violence.  She pointed out that adolescent sexual health is
a topic that many parents, teachers, religious leaders, and politicians are
afraid of addressing.  The fact that young people and girls in particular,
are most vulnerable to HIV should override moral or religious concerns.

Dr. Sadik proposed that individual behavior change was paramount to
stopping human rights abuses.  She advocated that women must be empowered
to protect themselves and that there must be greater partnership between
men and women.  She urged stronger leadership at the national and
international levels and reminded the group that advocacy was key to
bringing attention to the needs of girls and women living with AIDS and in
AIDS prevention programs.

Dr. Sadik ended with a quote from a Catholic delegate to the June special
session on HIV, "I may disagree with my daughter about sexuality, but I
don't want her to die from our disagreement."  Dr. Sadik honored the man
for his moral convictions and his acceptance of the reality of HIV in the
world, a reality that has the ability to end the life of his daughter and
thousands of others.

Speaking next was Dr. Winnie Mpanju-Shumbusho from WHO.  She reminded the
audience that the achievement of good health is a human right and that many
health disparities are rooted in fundamental structural
inequalities.  Freedom from discrimination is rooted in human rights law;
people living with AIDS (PLWA) are explicitly protected under the right
against discrimination based on health status.  The lives of most PLWA is
very different, however, from the rights as described in the Universal
Declaration of Human Rights.  Discrimination against PLWA is a vicious
downward spiral, when combined with discrimination based on race, gender,
and poverty.

Governments must fulfill their responsibilities to guarantee a standard of
living and protection for all their citizens; many PLWA, particularly
women, have limited access to preventive or curative services.  Most of the
1.5 million children living with HIV are infected by mother-to-child
transmission, and most mothers are infected by unprotected sex.  Ensuring
greater access to prevention and cure could save thousands of lives and
reduce the suffering of thousands more.  She stressed as well the
importance of educating young people at school and in the community,
promoting caring and responsible sexual behavior.

The most vulnerable populations in a society, men who have sex with men,
commercial sex workers, migrants, internally displaced people, drug users,
indigenous people, minorities, and women, face multiple forms of
discrimination.  In many countries, complex natural or man-made emergencies
lead to greater poverty, social collapse, and a rise in HIV infection
rates.  Rape as a tool of war, and Peace Keepers, whose presence leads to
an increase in voluntary and involuntary commercial sex work, also
contribute to the spread of HIV in emergencies.

Access to essential drugs is, in Dr. Mpanju-Shumbusho's view, a human
rights concern, one that is shared by 50 countries.  At every point
throughout the care continuum there should be attention paid to human
rights ­ by caregivers, families, communities, and others.  Health policies
and programs must protect PLWA and must collect and disaggregate data to
demonstrate the true impact of the disease on vulnerable groups.  Finally,
she concluded by saying that human rights and AIDS work must transcend
taboos, stigma, and denial.  Protecting the human rights of PLWA takes
courage and determination.

Mrs. Mercy Mahalemela spoke to the audience as an AIDS activist and a
person living with AIDS.  Having lost her husband and daughter to the
epidemic, Mrs. Mahalemela has lived with AIDS since 1993.  She was abused
at home, fired from her job, and ostracized by her community when she
revealed her HIV status.  At the time, she regarded AIDS as a death
sentence, but now believes that her work fighting against discrimination
and stigma has kept her alive.

Mrs. Mahalemela found it amazing that, 20 years on, the UN is only now
truly addressing the epidemic and questions as well why it has taken 20
years to accept the human rights implications of the disease.  She stated
that the human rights abuses against PLWA take place on a daily basis, on
the playground, in the home, at work, in religious settings.  Helping PLWA
learn their rights allows them to exercise their rights, allows PLWA to use
their brains and hearts in the battle, and empowers the battle against HIV.

She stressed the role of education in preventing the spread of HIV and
decried the expulsion of HIV positive children from school.  She emphasized
articles 23 and 26 of the Universal Declaration of Human Rights, that
everyone has a right to work and to education, and that those rights may
not be denied due to HIV status.

Mrs. Mahalemela ended by saying that PLWA wish to be joined by others in
their fight against AIDS and against discrimination.  Practical solutions
are need; most of all, the poorest people of the world need economic
empowerment, without it, people are trapped in powerless situations, unable
to escape abuse, discrimination, and hate.  People must, she said, have to
tools to fight for themselves.

Concluding the presentations for the day was Dr. Peter Aggleston.  He
reported that the UNAIDS paper on HIV and human rights, "Fighting
HIV-Related Intolerance: Exposing the Links Between Racism, Stigma, and
Discrimination" is now available on their website:
(http://www.unaids.org/humanrights/BPracism.doc)

He reminded the group that, since the beginning of the epidemic, AIDS and
race have been closely linked.  Early statements concerning African
sexuality and the consumption of monkey meat played into racist stereotypes
and continues to inform perceptions of the disease.  AIDS, he said,
exploits the fault lines in an unequal world.  In the USA, as the epidemic
shifted from gay men, it moved to communities of color so that 61% of HIV
positive people in the US are/were black or hispanic.  The reasons behind
these phenomena are a complex mixture of poverty and discrimination.  In
many countries, poverty is closely linked with HIV, colonialism,
neocolonialism, apartheid, migration, and the presence of other diseases.

Racism, in its intersection with gender, leads to women of color being the
most vulnerable population in the world.  Race and age is another powerful
combination, leading to high HIV prevalence in young people of color.  Dr.
Aggleston decried the invisibility of these groups, the fact that their
existence is denied by powerful discriminatory attitudes and practices,
including the denial of information and health care.  Freedom from
discrimination is fundamental human rights, and all treaties prohibit it
based on race or poverty.  Recent UN documents confirm "or other status" to
include HIV status as a protection from discrimination.

Dr. Aggleston called the western world to task, stating that racism has
kept the west from learning from other nations; cultural differences should
not be used as a reason to ignore the successes and lessons from around the
world.

In conclusion, he reminded the audience that, as the AIDS epidemic
triggered widespread discrimination and inequalities based on race, gender,
and sexual orientation, people's fundamental human rights have been
denied.  Dr. Aggleston warned that AIDS is not someone else's problem, that
the promotion of a non- or anti-racist understanding of the disease is
necessary to combat the discrimination that exists in health, education,
employment, and migration.

This excellent and forthright session was followed by a lively question and
answer period.  It was encouraging to see influential people, in positions
of significance in the UN, take such a powerful stance in the fight against
HIV-related discrimination.