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Susser, Ida  (2007) Plus ca change …. Women and AIDS in the second millenium. Centre for Civil Society Seminar : -.

Since the 1980s, researchers and grassroots activists have called for a
woman-centered perspective on the AIDS crisis, but somehow women’s
concerns are still rarely addressed. At the 2006 XVI International AIDS
Society Meeting in Toronto speakers pointed starkly to the rapidly
rising rates of infection among young girls and married women, the
subordination of women in the family, employment and education and the
general assault on women that the epidemic has come to represent.
Tragically, however, most of what was said about women was outlined
forcefully six years earlier by Peter Piot (Director of UNAIDS) and
Geeta Rao Gupta (International Center for Research on Women) at the 2000
XIII IAS Meeting in Durban, South Africa. It was also echoed in clarion
calls to action by UNIFEM representatives and by no less than Kofi Anan,
the Secretary General of the U.N., at the 2001 UNGASS (United Nations
General Assembly Special Session on AIDS) meeting. But as Stephen Lewis,
UN Special Envoy for HIV/AIDS in Africa, said in Toronto, “the one thing
that hasn’t changed is the grotesque vulnerability of women.”
In AIDS prevention and treatment, women are often seen as objects but
seldom as subjects. As women’s advocacy groups have argued, we have
under-used an essential resource— women's own abilities to precipitate
social change and to develop strategies. Women’s diseases have now been
counted and their knowledge and perceptions of disease analyzed, but we
need to facilitate women’s control of their own sexuality, their ability
to actively make choices, and their capacity to determine strategies and
work to change their societies. In the face of global inequalities and
crucial issues of race and class, HIV positive women the world over have
had to struggle with neglect, isolation and discrimination. One of the
important aims of the current women’s coalitions is for positive women
and women from the global South to hold leadership positions. These
strategies have the best chance of informing scientific perspectives,
policy initiatives and community mobilization in helping to alter
women’s vulnerability to AIDS.

Several outstanding speeches, which represented women as whole people
with needs, desires and insights were delivered at the Women and Girls
Rally and March, organized by a coalition of organizations including
Blueprint for Action on Women and Girls (a Canadian Advocacy coalition)
and Athena (an international feminist AIDS advocacy network ) before the
2006 opening plenary. Speakers included Mary Robinson, High Commissioner
for Human Rights 1997-2002, Helene Gayle, CEO of Care, Stella Lamda,
representing sex workers of Quebec, Keesha Larkin, a young positive
woman from the Canadian First Nations in British Columbia, Marie Bopp,
23 years old, who introduced herself with clarity and fierce
determination as the face of positive women from the Pacific Islands,
and Ann Marie de Sanzo, a former prison inmate speaking for the need for
harm reduction and prevention programs for Canadian women in prison. In
front of the podium was an art work by Fiona Kirkwood marking out the
word SURVIVAL in male and female condoms.

Musimbi Kanyoro, an African Episcopal woman minister and Secretary
General of the Worldwide Young Women’s Christian Association, at that
time, called for “Holy Disobedience”. Kanyoro, a senior officer of a
mainstream religious organization, announced that she was convening a
forum on women’s leadership on AIDS and said explicitly “bring the
female condoms…. Bring the sex workers…. There are drug users in Africa
too….As an African woman, I can say, we can negotiate safe sex, we can
use female condoms, we will use vaccines if they come.” Later when
Kanyoro delivered her speech at the official Thursday plenary she
repeated, “we need leaders who can go where angels dare not go.”
These claims complement those of the Women’s Caucus at the 2002
Barcelona International AIDS Society, which generated what became known
as the Barcelona Bill of Rights. The Barcelona Bill of Rights reframed
the AIDS agenda to integrate claims for women’s right to income,
educational equality, and the inheritance of land with the controversial
rights to sexual knowledge and reproductive choice. It was to support
the aims of this document that the Athena network and other groups came

Such concerns were reflected in a 2006 panel, organized by Athena,
“Claiming Rights for Women in HIV/AIDS,” which self- consciously brought
together papers from international representatives on the combined
issues facing women today: women with AIDS and all those trying to
protect themselves live in a world where their lives are framed by much
more than the HIV virus but at the same time, assaulted by the epidemic.
Luisa Cabal, from the Center for Reproductive Rights called for
international legal standards on reproductive rights, including the
rights of positive women to have children. Joanne Csete from the
Canadian HIV/AIDS Legal Network talked about harm reduction in terms of
the need to address the loss of children by women substance users who
test positive for AIDS. Elizabeth Minde, a Tanzanian lawyer, outlined
the loss of land rights for women, especially widows with HIV, within
the context of new constitutional land leases imposed on an older system
of communal but patrilineal land rights. Meena Seshu, reporting on
research on sex worker activists in India, pointed out that sex workers
are very seldom even included in discussions about women in the AIDS
world, but are placed on panels labeled as a separate category. She
described the VAMP collective, from the word Veshya for prostitute in
Sanskrit: a peer focused women-centered group where condoms are
considered lifesaving and a right and women have lessons on inheritance

Women have clearly been the focus of much work on HIV/AIDS. Health
educators and community activists have concentrated on women for
education about prevention. However, early messages to them could not be
narrower: ‘ask the man to use a condom’ and ‘love faithfully’,
disregarding the long-known fact, that, unlike their men, many women who
contract AIDS only have one partner, usually their husband. Early on,
the conflict between the use of the male condom and the limited ability
of women to insist on its use in order to protect themselves from
sexually transmitted infections and from mortal infection by HIV in
particular was pointed out. In 1992, the Reality female condom was
approved by the U.S. F.D.A and since then, some female condoms have, in
fact, been distributed at subsidized prices by such institutions as the
New York City Department of Health and in some countries of the global
South. In experimental trials, the acceptability of the female condom to
both women and men has varied widely, but has been as high as 90
percent. However, in most parts of the world, it has rarely been seen or
heard of, never mind available or affordable.

From the late 1980s, another possible option for women’s protection was
envisioned and has received much more funding and attention than the
female condom: a microbicide in the form of an invisible gel or cream
that would kill the virus. In July 2000, the first major set of
microbicide studies resulted in failure and, seven years later, in
January 2007, promising microbicide research has again confronted
scientific obstacles. Possibly, some microbicides will also require the
use of a diaphragm or some other such device to keep them in place.
Thus, microbicides may be understood as a potential future preventive
measure for reducing the incidence of AIDS in a population. They are not
sufficient to guarantee safety from AIDS infection for each person.
Microbicides that are being planned hope for possibly 50 percent
effectiveness and availability in five to seven years. As a result,
female condoms, which like male condoms, can claim at least 90 percent
reliability, are still the only effective preventive strategy women can use.
In light of the lack as yet of any successful microbicides, the
widespread neglect of the female condom in the US media and even among
many researchers and health professionals, is a contemporary and
important example of the failure of the cosmopolitan imagination. As
long as the female condom was dismissed as a cumbersome and inelegant
device in the US and judged by different standards than the male condom,
its acceptance as a highly desirable alternative to the male condom in
southern Africa and elsewhere could be conveniently ignored, a tragic
loss to the urgently needed prevention agenda. At Toronto 2006, women’s
advocacy networks, led by the Center for Health and Gender Equity, launched a campaign to promote the female condom and since then, Brazil has ordered 14 million female condoms to be distributed free and the United Nations Family and Population Administration are launching programs with female condoms in twenty four countries.

Changing Gender Expectations
In the process of building global connections, AIDS activists have had
to insist on a fundamental but much ignored feminist issue. HIV positive
women must be seen as worthy of treatment and attention whether or not
they are mothers, and treatment and prevention messages must not focus
simply on the survival of children. Although this issue does not break
down by North and South or class and race, in most poor countries, the
majority of positive women are in fact mothers or would like to be
mothers and are very much concerned for the survival of their children,
fertility options and breastfeeding choices. Thus, a major new set of
negotiations in the women and AIDS coalitions has been to bring groups
concerned with such issues as child survival and breastfeeding together
with feminists rightfully demanding recognition and treatment for women
as deserving human beings aside from motherhood. Each group has come to
recognize the significance and crucial needs of the other and to
construct the bridges that make the cause of women and AIDS stronger.
A crucial area where contrasts between North and South are evident
concerns the options for breastfeeding among HIV positive women. At the
moment, HIV positive women in the U.S. and Canada are required to forego
the other known health advantages of breastfeeding and to formula feed
their infants to avoid transmitting the virus through breast milk. In
the global South, with less access to clean water or money for formula,
breastfeeding can actually save the lives of children in many
situations. World Alliance for Breastfeeding Action, a research and
advocacy group inspired by the grassroots La Leche feminists of the
1960s, has been fighting to emphasize the importance of breastfeeding to
the global South. For the children of HIV positive mothers in the global
South, exclusive breastfeeding in the first six months of life has been
shown to be as effective as exclusive formula feeding in the first six
months of life.

Although breastfeeding has been much ignored in AIDS research and the
scientific literature, in March 2007 in the New York Times, medical
reporter Lawrence Altman finally noted that scientists have demonstrated
that breastfeeding among HIV positive women in Africa and elsewhere is
actually saving the lives of babies. However, abruptly weaning the
infants of HIV positive mothers at six months of age, seems to
contribute to later infant deaths. There are two approaches to solving
this problem in negotiating for women’s needs. On the one hand, as
scientific data emerges that babies weaned at six months are dying for
lack of nutrition, activist networks can call for free or subsidized
formula for all. Or, if, as mounting evidence in the global South seems
to suggest, babies who are breastfed without such abrupt weaning,
especially by women who can access treatment, may be surviving as well
or better than formula fed infants, then support for such practices
needs to be collectively ensured. In fact, if mothers can get treatment
for AIDS then breastfeeding may save their babies.

An appropriate address to the HIV/AIDS epidemic requires understanding
evolving visions of gender and sexuality among women and men. These
conjure up a range of issues as cultural views and voices change: ideas
of boundaries of the body; moments when conversation is allowed and when
people may not speak out; when and at what ages among young girls
virginity can be insisted on and in what ways such insistence on
virginity may be used counterproductively and repressively against the
young girls themselves; and under what circumstances single or married
women can safely refuse sexual intercourse. One of the most significant
issues in the transmission of AIDS is violence against women. Although
there is no space to do this topic justice here, it should be noted that
women’s advocacy networks have just produced a major report documenting the neglect of this issue by international agencies

In different situations around the world, men have begun to change their
images of masculinity, helping with child care and limiting their sexual
partners, in response both to changing social conditions and,
specifically, to the demands of women. This evidence of men's
flexibility and the power of women’s demands also suggests hopeful
directions for HIV/AIDS prevention. Finally, but of considerable import,
are responses to the threat of HIV/AIDS in which communities adapt
collective strategies locally and social movements may grow in broader
scale and thus transform the available options for prevention and

No less important than understanding the changing views of men and women is comprehending the perceptions among the policy makers in the centers
of power in the modern world, in cities like New York, Washington and
Geneva. What options do such influential groups regard as culturally
appropriate for women confronting the epidemic? Both international
decision-makers and local health professionals, relying on earlier
ethnographic descriptions of tradition, culture and modesty, can too
easily fail to grasp the capacities of people to change and learn new
methods, or for communities to respond constructively as they face the
extreme circumstances of the epidemic. Only if global decision-makers
have a clear understanding of the potential of women and men to respond
to desperate circumstances in constructive ways can they direct the
finances and the intellectual resources in effective ways.

Gay men in the US have fought to have their sexuality viewed with
dignity and consideration and to take control of their own future,
nevertheless, still, poor gay men have fared least well. Since it has
been poor women, women of colour and women of Africa who have been the
most dramatically affected by HIV/ AIDS, and since such women may have
even less access to power than those stigmatized for sexual orientation,
their sexuality has not been afforded the same consideration and
dignity. Neither HIV international policy makers nor local public health
workers have yet been fully effective in providing the resources for
women to define and expand their own strategies and options for
protection, treatment and care with respect to HIV/AIDS.

Some enlightened NGOs have tried to provide strategies and options for
women. One outstanding example has been the longstanding support by the
British NGO, Action Aid, of one of the first and most effective women's
organizations in Africa, The AIDS Support Organization (TASO). TASO was
first organized in Uganda in the 1980s by a few committed professional
women, several of whom were AIDS widows, looking for a way to confront
the epidemic. TASO became an international model for women's
organizations in the struggle against AIDS and stigma and replicated in
many other countries throughout Africa, provided care, counseling and
support for people with AIDS and their families.

However, since 2003, Uganda’s AIDS policies have been regulated by the
President’s Emergency Plan for AIDS Relief (PEPFAR) funds from the U.S.
government, which emphasize abstinence and promote faith-based
organizations. There has been an increasingly strict imposition of US
government-advocated ABC policy: A for abstinence (without sex education
or access to condoms); B for Be Faithful; and if all else fails, for
adults only, C for Condom. As a result, even the male condom has gone
missing and some groups in Uganda felt compelled to organize a “Free the
Condom” campaign to release condoms trapped in warehouses for general
distribution. Lady Janet Museveni, the wife of President Moweri Museveni
of Uganda, recently announced a $39 million grant from US AID for Moon
Beads, a way to count the days to menstruation and ovulation with beads
similar to a rosary, certainly not much help in AIDS prevention.
A central goal for AIDS prevention and treatment based on scientific
research and supported widely by health professionals and activists has
been access for all women to comprehensive reproductive and sexual
health including fertility planning, barrier methods and sexual
knowledge. Young girls and married women would have a unified source of
information and resources throughout their reproductive lives. This goal
was included in 2000 in the United Nations Millennial Goals but has been
overshadowed and undermined by the Bush regime and the PEPFAR funds..
The PEPFAR requirements have created obstacles to the inclusion of
stigmatized groups such as sex workers and drug users in local
prevention and treatment programs. The current PEPFAR regulations also
prevent youth, even when choosing abstinence, from full sexual and
reproductive knowledge and access to female and male condoms. In terms
of the millennial goals, reproductive and sexual health including but
not exclusively male and female condoms should be freely available to
everyone including drug users, sex workers and women of all ages.
Initiatives to provide treatment in the global South represent a
monumental achievement attributable to the vision, energy and commitment
of health activists all over the world. As a result, PEPFAR, the Global
Fund to Fight AIDS, Tuberculosis and Malaria, and the Bill and Melinda
Gates Foundation are funding AIDS treatment for many people in poor
countries. Already, enlightened health professionals are developing
model family centered programs that provide treatment for women or men
as well as their partners and children. However, as we have seen, the
PEPFAR regulations impede AIDS prevention efforts and, sadly, the rates
of infection are multiplying faster than the distribution of
anti-retroviral treatment.

As the Center for Health and Gender Equity, ATHENA, and many other
groups at the 2006 Toronto IAS made clear, one of the most important
acts to protect all women must be to free the PEPFAR funds from their
sexist, anti-sex, and retrograde principles. Current restrictions on the
distribution of male and female condoms, reproductive rights and sexual
knowledge which accompany the millions of PEPFAR dollars are setting up
barriers to AIDS prevention and may be facilitating the spread of HIV
infection, particularly among young girls and married women. The most
significant act that could save the lives of women and girls in the
world today is to free up these funds from the many restrictions,
including those on syringe exchange and treatment for sex workers.

Rep. Barbara Lee, D-Calif. who spoke at the Women and Girls March in
Toronto, has joined the fight to unshackle PEPFAR by introducing the
Protection Against Transmission of HIV for Women and Youth (Pathway) Act
of 2006 to the U.S. House of Representatives. The Pathway Act would
remove the requirement that one third of U.S. prevention funding be
spent on abstinence-until-marriage programs and calls for a
comprehensive and integrated HIV prevention strategy. Only an
understanding that recognizes women and girls as people with all the
failings and creative accomplishments of men and the right to
comprehensive sex education (Wollstonecraft 1792) can lead to the
prevention of AIDS in the world today.
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